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Understanding the experience of emotional and social engagement for people with advanced dementia living… Canning, Shelley Elisabeth 2020

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UNDERSTANDING THE EXPERIENCE OF EMOTIONAL AND SOCIAL ENGAGEMENT FOR PEOPLE WITH ADVANCED DEMENTIA LIVING IN LONG-TERM CARE     by    Shelley Elisabeth Canning       B.Sc., University of Victoria, 1980   B.S.N., University of British Columbia, 1988  M.S.N., University of British Columbia, 1996          A DISSERTATION SUBMITTED IN PARTIAL FULFILLMENT OF  THE REQUIREMENTS FOR THE DEGREE OF    DOCTOR OF PHILOSOPHY      in    The Faculty of Graduate and Postdoctoral Studies   (Nursing)        THE UNIVERSITY OF BRITISH COLUMBIA   (Vancouver)         September 2020    © Shelley Elisabeth Canning, 2020  ii  The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the dissertation entitled:  Understanding the experience of emotional and social engagement for people living with advanced dementia in long-term care  submitted by Shelley Elisabeth Canning  in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Nursing  Examining Committee: Alison Phinney, Nursing Supervisor  Sally Thorne, Nursing Supervisory Committee Member  Deborah O’Connor, Social Work Supervisory Committee Member John Oliffe, Nursing University Examiner Michael I MacEntee, Dentistry University Examiner       iii  Abstract Quality of life and well-being for people living with advanced dementia has been positively associated with engaging in meaningful activities and relationships; however, there is limited understanding of what constitutes meaningful engagement, and how it can best be supported for people living with advanced dementia in long-term care homes. Typically, studies have sought the perspectives of family and care providers in exploring experiences of meaningful engagement for these individuals, while few studies have included the perspectives of residents living with advanced dementia themselves. In my dissertation research I sought to address these gaps, gaining a richer and more nuanced understanding of the ways that older adults living with advanced dementia in long-term care homes experience meaningful engagement. I employed a qualitative applied research design, drawing on focused ethnography. Focused ethnography supports a shortened field time and the use of technology in data gathering. My methods included video-recording to capture the experiences of residents living with advanced dementia that are visible but difficult to capture through interview. Participant observation data was gathered across a range of settings in a long-care home while the residents engaged in both structured and unstructured activities and interactions. I also conducted interviews with family members and nursing and allied care staff. Thus, data reflected a range of sources and methods providing multiple perspectives for rich analysis.  I observed many examples of meaningful engagement through activities and social connections that occurred during arts-based programming and the quiet routines of everyday life. Drawing on embodied and relational lenses, I found that the residents continued to express creativity, humour, enjoyment, and agency. In contrast, family and staff members typically iv  described the residents in terms of their current losses, positioning their abilities and accomplishments in the past. They drew on these past perspectives in supporting meaningful engagement with the residents through building connections between the past and present. Ultimately, my findings point to the persistent personhood and enduring ability of residents living with advanced dementia to experience meaning. My hope is that these findings will promote long-term care programming better tailored to support their quality of life.                v  Lay Summary Engaging in meaningful activities and relationships is closely associated with quality of life for people living with advanced dementia. However, providing these opportunities for individuals living in long-term care homes is challenging and residents typically spend long hours only passively engaged. My research aim was to better understand how meaningful engagement is experienced by people living with advanced dementia in care, and how their engagement is understood by family and staff members. I observed residents as they engaged in activities and social interactions with others, interviewed family and staff members, and engaged in conversations with the residents. My findings highlighted the enduring abilities of residents as they continued to engage in meaningful activities and interactions despite their progressive symptoms of dementia. Ultimately, deeper understandings of how people living with advanced dementia experience and engage in meaningful activities and relationships will support programming designed to better support their quality of life.            vi  Preface This dissertation is an original intellectual product of the author S. E. Canning. I conducted the fieldwork (e.g. all interviews and participant observations) and wrote the initial drafts of all manuscripts. My supervisor and committee members provided guidance on research design, data analysis, and a critical review of the writing of the dissertation. The research was approved by the UBC Behavioral Research Ethics Board and Fraser Health Research Ethics Board: certificate number UBC H17-00476.   All images included in this dissertation are used with the consent of the study participants.         vii  Table of Contents Abstract ......................................................................................................................................... iii Lay Summary ................................................................................................................................ v Preface ........................................................................................................................................... vi Table of Contents ........................................................................................................................ vii List of Tables ............................................................................................................................... xv List of Figures ............................................................................................................................. xvi List of Abbreviations ................................................................................................................ xvii Acknowledgements .................................................................................................................. xviii Dedication .................................................................................................................................... xx Chapter One: An Introduction to the Study .............................................................................. 1 1.1 Background .......................................................................................................................... 1 1.2 Positioning the Study .......................................................................................................... 6 1.3 Research Questions and Purpose ....................................................................................... 9 1.4 A Preview of the Following Chapters .............................................................................. 11 Chapter Two: A Review of the Literature ................................................................................ 13 2.1 Introduction ....................................................................................................................... 13 2.2 Understandings of Dementia ............................................................................................ 14 2.2.1 Taking the psychosocial turn ........................................................................................ 14 2.2.2 Perceived difference ..................................................................................................... 19 2.2.3 Persistent personhood ................................................................................................... 21 2.2.4 Person-centred approaches to care ............................................................................... 22 2.3 Enduring Ability in Advanced Dementia ........................................................................ 25 2.3.1 Advanced dementia. ..................................................................................................... 25 2.3.2 Apathetic assumptions .................................................................................................. 26 viii  2.3.3 Enduring abilities .......................................................................................................... 27 2.4 Meaningful Engagement ................................................................................................... 30 2.4.1 Social connections ........................................................................................................ 33 2.4.2 Embodied connections .................................................................................................. 35 2.5 Art-Based Interventions ................................................................................................... 37 2.5.1 Music therapy ............................................................................................................... 40 2.5.2 Dance movement therapy ............................................................................................. 42 2.5.3 Intergenerational programming .................................................................................... 43 2.6 Summary ............................................................................................................................ 45 Chapter Three: Conceptual Framework .................................................................................. 47 3.1 Introduction ....................................................................................................................... 47 3.2 Taking a Broad View of the Person with Dementia ....................................................... 48 3.3 A Phenomenological Perspective ..................................................................................... 50 3.3.1 The person-in-the-world. .............................................................................................. 51 3.3.2 Meaning-making. .......................................................................................................... 52 3.4 The Subjective Perspective ............................................................................................... 53 3.4.1 The embodied person. ................................................................................................... 54 3.4.2 The dialogical person. ................................................................................................... 55 3.5 A Broad View: Situated, Embodied, and Dialogical ...................................................... 57 3.6 Summary ............................................................................................................................ 58 Chapter Four: Methodological Framework ............................................................................. 60 4.1 Introduction ....................................................................................................................... 60 4.2 Epistemological Grounding .............................................................................................. 61 4.3 Methodology: Focused Ethnography .............................................................................. 62 4.4 Study Setting ...................................................................................................................... 64 ix  4.4.1 Physical environment. .................................................................................................. 64 4.4.2 Philosophy of care. ....................................................................................................... 65 4.4.3 Staffing. ........................................................................................................................ 65 4.4.4 Activity programming. ................................................................................................. 66 4.4.5 Setting Rationale........................................................................................................... 66 4.5 Participants: Recruitment Criteria and Processes ......................................................... 68 4.5.1 Resident participants..................................................................................................... 68 4.5.1.1 Resident participant inclusion criteria. .................................................................. 68 4.5.1.2 Resident participant recruitment process. .............................................................. 70 4.5.2 Family member participants. ........................................................................................ 72 4.5.2.1 Family member inclusion criteria. ......................................................................... 72 4.5.2.2 Family member recruitment process. ..................................................................... 72 4.5.3 Staff member participants. ............................................................................................ 73 4.5.3.1 Staff member inclusion criteria. ............................................................................. 73 4.5.3.2 Staff member recruitment processes ...................................................................... 74 4.6 Data Gathering Methods .................................................................................................. 75 4.6.1 Participant observation ................................................................................................. 76 4.6.1.1 The observation process ......................................................................................... 76 4.6.1.2 Observer-as-participant .......................................................................................... 77 4.6.2 Go-along conversations ................................................................................................ 78 4.6.3 Video-recorded data ..................................................................................................... 79 4.6.4 Field notes..................................................................................................................... 80 4.6.5 Analytic memos ............................................................................................................ 81 4.6.6 Staff and family member participant interviews .......................................................... 81 4.7 Data Analysis Processes .................................................................................................... 82 x  4.7.1 Analytic approach. ........................................................................................................ 82 4.7.2 Data management ......................................................................................................... 83 4.7.3 Process of analyzing textual data.................................................................................. 83 4.7.4 Process of analyzing video data.................................................................................... 85 4.7.5 Study outcomes............................................................................................................. 86 4.8 Rigour ................................................................................................................................. 87 4.8.1 Reflexivity .................................................................................................................... 90 4.9 Ethical Considerations ...................................................................................................... 93 4.9.1 Consent, assent, and dissent ......................................................................................... 93 4.9.2 Video-recording ............................................................................................................ 96 4.10 Summary .......................................................................................................................... 97 Chapter Five: A Reflexive Accounting of Researcher Roles and Identities .......................... 99 5.1 Introduction ....................................................................................................................... 99 5.2 Explicating My Researcher Roles and Identities ......................................................... 100 5.2.1 My insider status ......................................................................................................... 100 5.2.2 Reflections on being a nurse. ...................................................................................... 102 5.2.2.1 Nursing identity ................................................................................................... 102 5.2.2.2 Nursing role ......................................................................................................... 103 5.3 Benefits as a Nurse-Researcher ...................................................................................... 106 5.3.1. Familiarity and acceptance ........................................................................................ 107 5.3.2. Confidence and expertise........................................................................................... 107 5.3.3. Trust and rapport ....................................................................................................... 109 5.4 Challenges as a Researcher-Nurse ................................................................................. 110 5.4.1 Assumptions based on prior experiences .................................................................... 110 5.4.2. Establishing my identity ............................................................................................ 113 xi  5.5 Developing My Researcher Skills .................................................................................. 114 5.5.1 Considerations related to participant observations ..................................................... 115 5.5.2 Considerations related to video-recording .................................................................. 115 5.5.2.1 Developing camera skills ..................................................................................... 116 5.5.2.2 Positioning the researcher and the lens ................................................................ 116 5.5.2.3 Developing comfort with ethical considerations. ................................................ 118 5.6 Navigating the Tensions Between Roles and Identities ............................................... 120 5.6.1 Case study one: a trip to the farm ............................................................................... 120 5.6.2 Case study two: together for lunch ............................................................................. 127 5.7 Complementary Pathways .............................................................................................. 130 Chapter 6: Living with Advanced Dementia: Experiences of Meaning .............................. 133 6.1 Introduction ..................................................................................................................... 133 6.2 A Brief Introduction to the Resident Participants ....................................................... 134 6.2.1 An Introduction to Ed ................................................................................................. 134 6.2.2 An Introduction to Alice ............................................................................................. 136 6.2.3 An Introduction to Mary ............................................................................................. 137 6.2.4 An Introduction to Edith ............................................................................................. 137 6.2.5 An Introduction to Anna ............................................................................................. 139 6.3 Understanding the Meaning in Engagement ................................................................ 140 6.4 Meaningful Engagement in the Mundane of Everyday ............................................... 143 6.4.1 Situated amidst the sameness. .................................................................................... 143 6.4.2 Waiting and watching ................................................................................................. 144 6.4.3 Small observations with bigger meanings .................................................................. 146 6.4.4 Seeing, hearing, and feeling the data .......................................................................... 148 6.5 Meaningful Engagement in Social Connections ........................................................... 150 xii  6.5.1 Embodied expressions ................................................................................................ 151 6.5.1.1 Emotional expressions ......................................................................................... 154 6.5.2 Humorous expressions ................................................................................................ 157 6.5.3. Musical expressions ................................................................................................... 160 6.6 Meaningful Engagement Drawing on Enduring Abilities and Sophisticated Behaviours.............................................................................................................................. 162 6.6.1 Still able to do it.......................................................................................................... 163 6.6.2 Still trying to do it (right). .......................................................................................... 170 6.6.3 Still improvising ......................................................................................................... 172 6.6.4 Still Critiquing and Evaluating ................................................................................... 173 6.7 Summary .......................................................................................................................... 177 Chapter Seven: Matters of perspective: Living in the Past and Present ............................. 179 7.1 Introduction ..................................................................................................................... 179 7.2 Perspectives on the Past: The Ways They Were .......................................................... 180 7.2.1 What they knew and what they did ............................................................................ 181 7.2.2 The underlying stories ................................................................................................ 183 7.3 Perspectives on the Present: The Ways They Are ........................................................ 186 7.3.1 What they know and what they do. ............................................................................ 186 7.3.1.1 The impact of physical losses on engagement ..................................................... 187 7.3.1.2 The impact of cognitive losses on engagement. .................................................. 189 7.3.2 Engaging in relationships. .......................................................................................... 190 7.3.3 Who was known becomes familiar. ............................................................................ 193 7.4 Navigating Past Perspectives: Supporting Engagement in the Present ..................... 197 7.4.1 Bridging the past and present with staff. .................................................................... 200 7.4.1.1 Creating connections through imagining the past. ............................................... 204 xiii  7.4.2 Bridging the past and present with family .................................................................. 205 7.4.2.1 Struggling to reimagine the present ..................................................................... 208 7.4.3 Building their own bridges ......................................................................................... 209 7.5 Summary .......................................................................................................................... 211 Chapter Eight: Discussion and Conclusions .......................................................................... 213 8.1 Introduction ..................................................................................................................... 213 8.2 Understandings Gained .................................................................................................. 214 8.2.1 Social connections and communication ..................................................................... 216 8.2.2 Enduring abilities and sophisticated behaviours. ....................................................... 219 8.2.3 Unstructured activities and informal interactions. ...................................................... 220 8.2.4 Integrating past and present perspectives. .................................................................. 223 8.3 Ways Forward: Study Implications .............................................................................. 227 8.3.1 Implications for practice. ............................................................................................ 227 8.3.1.1 Understanding enduring abilities and persistent personhood. ............................. 227 8.3.1.2 Supporting meaningful engagement in activities and social connections ........... 229 8.3.2 Implications for research. ........................................................................................... 231 8.3.2.1 Including residents as participants. ...................................................................... 231 8.3.2.2 A nurse researcher in applied health research ...................................................... 233 8.4 Limitations of the Study ................................................................................................. 234 8.5 Recommendations for Future Research Studies .......................................................... 236 8.6 Conclusions ...................................................................................................................... 238 References .................................................................................................................................. 241 Appendix A: Study Introduction and Information Sheet ..................................................... 269 Appendix B: Letter of Introduction and Information ........................................................... 271 Appendix C: Research Poster .................................................................................................. 273 xiv  Appendix D: Informed Consent – Designated Substitute Decision-maker ......................... 274 Appendix E: Resident Participant Assent .............................................................................. 281 Appendix F: Informed Consent – Staff Carer Participant ................................................... 284 Appendix G: Informed Consent – Family Member Participant .......................................... 289 Appendix H: Informed Consent – Indirect Participant ........................................................ 294 Appendix I: Observation Guide .............................................................................................. 300 Appendix J: Interview Guide Staff-Carer and Family Member Participants .................... 301 Appendix K: Go-Along Conversation Guide ......................................................................... 303 Appendix L: Indirect Participant -Child Assent.................................................................... 304       xv  List of Tables Table 4.1 Resident Participant Characteristics ............................................................................. 71 Table 4.2 Staff Member Participant Roles .................................................................................... 75             xvi  List of Figures Figure 5.1:  Ed Drawing His Map ............................................................................................... 125 Figure 5.2:  Ed’s Map to the Farm .............................................................................................. 126 Figure 6.1:  An Introduction to Ed .............................................................................................. 135 Figure 6.2:   An Introduction to Alice......................................................................................... 136 Figure 6.3:  An Introduction to Edith.......................................................................................... 138 Figure 6.4:  An Introduction to Anna.......................................................................................... 139 Figure 6.5:  Edith — Intergenerational Engagement .................................................................. 142 Figure 6.6: Alice — Beginning to Play ...................................................................................... 166 Figure 6.7: Alice — Remembering How .................................................................................... 167 Figure 6.8: Alice — Adding in the Pedals .................................................................................. 168 Figure 6.9: Alice — Finishing with a Flourish ........................................................................... 169 Figure 6.10: Alice — Identifying the Offending Note ............................................................... 171            xvii  List of Abbreviations CPS…………………………………………………………………Cognitive Performance Scale FAST………………………………………………………. Functional Assessment Staging Tool LPN………………………………………………………………………Licensed Practical Nurse MT………………………………………………………………………………...Music Therapist OT………………………………………………………………………… Occupational Therapist PT…………………………………………………………………………………. Physiotherapist RAI/MDS……………………………….…. Resident Assessment Instrument/Minimum Data Set RCA……………………………………………………………………………Resident Care Aide RCC…………………………………………………………………… Resident Care Coordinator RN………………………………………………………………………………. Registered Nurse RT…………………………………………………………………………... Recreation Therapist             xviii  Acknowledgements Completing this dissertation has been a great challenge and great personal accomplishment. Any success I have had is because of the unwavering support of a host of family and friends, and the very best possible dissertation committee. I can’t reflect on this experience without smiling my deep appreciation for my friends and colleagues; you offered me your unflagging advice, assistance, and genuinely cared about my successful completion. In particular I’m smiling at Tracy, Joanne, JoAnne, and my “UBC family”; you all recognized my latent doctoral dream and convinced me it was possible. My family have been my constant cheerleaders throughout the past years of writing through the evenings, weekends, and summers. You patiently listened to my fears while keeping me focused on my goals. This has been an amazing experience to share with you. All of you sat in my “office” for hours both distracting me and urging me to move ahead. Geneviève, Élise, and Isabelle I now look forward to supporting your academic and professional journeys. René, the next years will be full and fun.  I truly believe I have had the best possible dissertation committee. I know you were all so invested in my success. It has been really valuable to hear your insights and get to know you Deb. Your lens on citizenship has been critical in centering my understanding. Sally, you have been a part of my academic and professional journey from the very beginning. As always, I benefit from your perspective on nursing and scholarship. I could not have imagined doing this without your genuine investment in my success. And finally, I would never have found my footing within the world of dementia scholarship without you Alison. With equal measures of expectation and encouragement you ensured I kept moving forward. I have told you many times xix  that this has been the best part of my professional life. That is true, and that is because of you – you are an inspiring scholar and person and I really just can’t thank you enough.                   xx  Dedication  I dedicate this dissertation to my parents, Albert, and Doreen Canning. My father died long before I started my PhD, but he sowed the seeds early, establishing my love for scholarship as we wandered through the university bookstore the summer before my first year of undergraduate study. He was clever and inspiring, and provided a steady encouragement for me to reach my academic and professional goals over the years. My mum did walk alongside me for most of my dissertation journey. A proud nurse herself, she kept me grounded in what was important by asking those simple questions about the ultimate purpose of my scholarship, and towards the end, entreating me to finish my course. I believe that my scholarship reflects the very best ways that I am like both of these wonderful people. I know they would be, and were, so very proud of me.             1  Chapter One: An Introduction to the Study 1.1 Background In 2011, I was part of an interdisciplinary research team examining the impact of a unique arts-based programme implemented at a local long-term care home. Our research project involved exploring the development of attitudes and relationships between elementary school-aged children and residents living with dementia in a long-term care home. The children and residents participated together in a weekly structured ballet class over a six-month period. These dance classes were filmed, highlighting powerful images of the residents engaged in meaningful relationships with the children; this visual data became the focus of a documentary film (Centre for Education and Research on Ageing, Blakeborough, 2013).  While the children’s understanding of ageing and attitudes regarding older adults were the focus of the original study, the film footage clearly highlighted the potential for people living with advanced dementia to continue to engage in meaningful social activities and relationships despite their significant cognitive and physical deficits and challenges. My dissertation research builds off this earlier study, now with the focus on the experiences of older adults living with advanced dementia, interrogating, and systematically exploring their enduring abilities and potential for meaningful activity and relationships.   My dissertation research is positioned against a backdrop where dramatic demographic changes are predicted for Western societies over the next decades.  Significant increases in ageing populations are bringing complex issues and challenges to established political, economic, and healthcare structures.  Central to the challenge of an ageing population is the impact of an increasing prevalence of people diagnosed with dementia.  Specifically, Canadian 2  projections estimate that between 2016 and 2031, the number of people living with dementia will double to well over one million, accompanied by a significant increase in the demand for long-term care beds (Alzheimer’s Society Canada, 2016). Thus, with the population ageing at this dramatic pace, long-term care homes are increasingly taxed in meeting the care needs of growing numbers of residents living with dementia (Beerens, Zwakhalen, Verbeek, Ruwaard, & Hamers, 2013; Hunter, Hadjistavropoulos, Thorpe, Lix, & Malloy, 2016).   In recent decades there has been recognition of the limits of structuring policy and practices related to people living with dementia through a biomedical lens; in response, there has been a call for dementia scholarship that moves beyond pathology and pharmacology to understand the importance of social and caregiving relationships for people living with dementia (Beard, 2004; Downs, 2013b). A theoretical framework that conceptualizes people living with dementia within the context of their experiences, relationships, and broader social structures serves to shift the focus to the person with dementia as opposed to the person with dementia (Kitwood, 1997).  This broader understanding of people living with dementia was a significant move away from the long-standing dominance of the biomedical model. In particular, the work of Thomas Kitwood (1997) has been central to understanding people living with dementia as having a worth and value that is not dependent on cognition and function, instead recognizing and respecting their personhood. From this perspective each person is viewed as unique, and capable of meaning-making and action despite their dementia. Personhood is conceptualized through a relational lens, observing that despite advanced dementia symptoms, meaningful relationships remain possible (Kitwood, 1997).  Kitwood’s conceptualizations of person and personhood have been central drivers for the development for the person-centred care approaches that underlie current models of dementia-3  care (Dewing, 2008; Fazio, Pace, Flinner, & Kallmyer, 2018). In contrast to biomedical goals of control and cure, person-centred care approaches focus on issues of quality of life and well-being with goals related to improved care. Recent decades have seen person-centred care practice models being widely taken up, becoming broadly synonymous with good dementia-care in the western world (Brooker, 2004). As applications of person-centred care continue to evolve and inform dementia-care practices, central tenets remain focused on providing care that respects the uniqueness of each person living with dementia and recognizes the integral role of both the care environment and social relationships in determining the dementia experience (Edvardsson, Winblad, & Sandman, 2008; McCormack, Roberts, Meyer, Morgan, & Boscart, 2012; Nolan, Davies, Brown, Keady, & Nolan, 2004; Røsvik, Brooker, Mjorud, & Kirkevold, 2013).  Despite the wide-spread acceptance of these basic tenets of a person-centred care philosophy, successful implementation of this approach has remained challenging in practice (Brooker, 2004; Castillo, 2011; Colomer & de Vries, 2016; Dewing, 2008). Barriers to implementing person-centred approaches in dementia-care can be understood in terms of both structural and organizational constraints, and negative attitudes, values, and beliefs regarding people living with dementia. Care settings have traditionally been purpose-built, designed to enhance safety and the provision of care tasks (O’Sullivan, 2013). Both the long-term care home environment, and its routinized care practices have typically been designed to balance the care needs of large numbers of individuals against the economics of staffing levels and care costs. Subsequently, caring for large numbers of complex, vulnerable people with small staffing numbers challenges person-centred care approaches and encourages a default to more biomedical goals of care (Brooker, 2004; Edvardsson et al., 2008; Stein-Parbury et al., 2012).  4  Equally problematic are negative attitudes, where people living with dementia fall victim to societal values privileging youth and intellectual capacity. They experience dementia-ism based on their diminished cognitive capacity and diminished ability to demonstrate agency and autonomy (Adelman, Greene, & Ory, 2000).  Where there is a high value on youth and intellectual capacity, people living with dementia are stigmatized and face discrimination based on their age and cognitive challenges (Brooker, 2004; O’Connor, Mann, & Wiersma, 2018). Subsequently, pejorative attitudes towards people living with dementia negatively impact their care. When dementia is seen to be the primary marker of identity, nurses and other care providers have been observed to revert to a biomedical approach as seen through the practice of othering (Doyle & Rubinstein, 2013). When care providers believe that personhood is lost in people living with dementia, the level of care is reduced to primarily physical tasks with a reduction in efforts to form relationships (Edvardsson, et al., 2008). Attitudes and understandings that devalue and diminish people living with dementia have been shown to negatively influence education, staffing models, policies, and practice frameworks related to dementia-care (Brooker, 2004; Dewing, 2008).  Thus, social constructions of dementia that focus on deficit and disability create barriers to quality of life for residents living with dementia in long-term care homes. Further, care providers often struggle to provide opportunities for meaningful engagement for residents living with advanced dementia whose symptoms reflect complex communicative, cognitive, physical, and functional deficits (Harmer & Orrell, 2008).  Subsequently, these individuals frequently experience diminished engagement in meaningful activities and social interactions (Gold, 2014; Smit, de Lange, Willemse, Twisk, & Pot, 2016). Despite recognition that meaningful engagement is an important indicator of quality of life in long-term care homes, residents whose 5  disease is advanced often spend long periods alone in passive activity with limited engagement in meaningful activities and social interactions, (Milne, 2011; O’Rourke, Duggleby, Fraser, & Jerke, 2015; Tak, Kedia, Tongumpun, & Hong, 2015).  Subsequently, apathy has been explored as it relates to passivity in people living with advanced dementia living in long-term care homes (Starkstein, Petracca, Chemerinski, & Kremer, 2001; Treusch et al., 2011). It is estimated that 50-70% of people living with dementia experience apathy with both institutionalization in long-term care homes and lack of opportunity for engagement in meaningful activities identified as factors promoting apathy (Brodaty & Burns, 2012; Politis, et al., 2004). However, apathy has often been conceptualized in biomedical terms, being defined as a symptom related to cognitive impairment (Politis et al., 2004), offering little insight into the lived experiences of passivity and meaningful engagement for people living with advanced dementia.  With increasing numbers of people living with dementia in long-term care homes, the challenge remains to ensure that they have a life worth living (Brooker, 2008).  In response, over the past two decades there has been increasing interest in the potential benefits of non-pharmacological interventions that center on meaningful activities and social connections in addressing challenging care behaviours and promoting quality of life and well-being for people living with dementia in long-term care homes. To that end, interventions involving reminiscence; cognitive stimulation; one-on-one interactions; intergenerational programming; and a wide range of arts-based interventions, many involving music and movement have been described in the literature (Beard, 2012;  Zeilig, Killick, & Fox, 2014). Arts-based interventions typically incorporate elements of music, dance, visual arts, drama, and physical activities with goals of reducing problem behaviours, and increasing enrichment and well-being (Beard, 2012). 6  Increasingly arts-based dementia-care programming is implemented recognizing the potential to provide opportunities for meaningful engagement in activities and relationships. 1.2 Positioning the Study My dissertation research is positioned with a recognition of both the challenges and the enduring potential that exists for residents living in long-term care, including those with advanced symptoms of dementia, to continue to experience meaningful engagement. This position is in keeping with current scholarship acknowledging that both limited opportunities for meaningful engagement and limited understanding of what constitutes meaningful engagement have been identified as important factors related to the experiences of residents living with dementia in long-term care homes (Chung, 2004; Tak, et al., 2015). As I observed above, structural and organizational constraints can impede residents’ opportunities for activities and social engagement as schedules and resources are accommodated (Colomer & de Vries, 2016; O’Sullivan, 2013). This is especially problematic for residents living with advanced dementia as they have the least ability to initiate activity or social interactions and depend on others for those opportunities (Smit et al., 2016).  At the same time, nurses and other care providers often struggle to understand how best to support meaningful engagement (Colomer & de Vries, 2016); identifying a lack of knowledge regarding how to engage people living with advanced dementia, care providers struggle to recognize the benefits of engagement for quality of life (Hiller & Stokes, 2012; Smit, et al., 2016). It follows that in the face of the communication and memory losses that accompany advanced dementia, assumptions may be made that everyday interactions and relationships are no longer relevant or meaningful (Beard, 2004).  7  In contrast, understanding the person more broadly, and recognizing the context of their relationships and experiences provides a lens for viewing people living with advanced dementia in terms of their enduring potential and capability (Castillo, 2011; Hughes, 2001; Sabat, 2014). Studies examining their experiences of meaningful social engagement support the enduring ability of people living with advanced dementia in long-term care homes to continue to demonstrate basic social skills, express creativity, initiate social contact, and express a range of emotions (Chappell, Kadlec, & Reid, 2014; Götell, Brown & Ekman, 2009; Sabat & Gladstone, 2010). Within the small but growing body of work specific to understanding experiences of meaningful engagement in advanced dementia, these residents are understood to maintain the potential to experience and express meaning in interactions and relationships (Milne, 2011). It is this enduring potential, despite advanced dementia, that underscores the importance for long-term care environments and care providers to better understand how to support meaningful activities and social relationships, and ultimately underscores the significance of my dissertation research. Thus, my research is underpinned by a broad view of people living with advanced dementia, recognizing their persistent personhood, enduring abilities, and continued potential to experience meaningful engagement (Hughes, 2014a). However, as their disease progresses residents living with advanced dementia are increasingly challenged to participate and communicate in the usual ways that support participation in activities and social relationships. As their cognition and language become diminished, their embodied expressions can be understood to communicate their experiences of meaningful engagement. For these residents, the concept of embodiment provides a bridge for the body to communicate subjective experience (Coaten & Newman-Bluestein, 2013; Hughes, 2001; Kontos, 2004; Phinney & Chesla, 2003). Thus, 8  embodiment provides a lens where the body becomes a vehicle for communicating in social relationships and activities and interactions and experiences are understood through bodily expressions of thoughts, feelings and intentions (Hughes, 2014a). An embodied understanding recognizes the persistence of personhood in dementia despite cognitive losses, understanding people living with advanced dementia to continue to engage with others in ways that have meaning, value, and significance (Downs, 2013a; Kontos & Martin, 2013). With this understanding, relational and embodied lenses were central to my exploration of experiences of meaningful engagement for people living with advanced dementia in this study.  Arts-based interventions have been seen to provide important opportunities for people living with advanced dementia to participate in meaningful activities and social relationships (Beard 2012; Zeilig, et al., 2014). Music therapy programmes are the most common form of arts-based programming in long-term care homes; music therapy has a range of resident goals including support for creative expression, communication, and social inclusion (Ahessy, 2017; Beard, 2012). Similarly, both dance movement therapy and intergenerational arts-based programming have been associated with supporting socializing and relationships through partnering with others (Coaten & Newman-Bluestein, 2013; Galbraith, Larkin, Moorhouse, & Oomen, 2015. Thus, in this study, arts-based programming provided an important context for exploring the residents’ meaningful engagement while relational and embodied lenses provided a vehicle to guide my understanding.  Evaluating the experiences of residents participating in arts-based programming has typically focused on proxy reports or clinical outcomes as opposed to understanding the subjective meaning of the dementia experience (Beard, 2012; Deudon, et al., 2009). However, recently there has been increased support for people living with dementia to share their 9  perspectives along with the recognition that their perspectives are important in meeting care needs and supporting their quality of life (De Boer, et al., 2007; Phinney, 2010). Eliciting the perspectives of residents with advanced dementia is particularly challenging in the face of their progressive cognitive and communicative deficits. However, in the absence of understanding the subjective experiences of dementia, providing dementia-care that successfully engages these individuals in meaningful activities and relationships is difficult to achieve.  In completing this research, I sought to make a significant contribution to the current knowledge base through addressing two critical gaps. While there is growing interest in the arts as a way to provide opportunities for meaningful engagement contributing to the quality of life for residents with advanced dementia, limited studies include the perspectives of the residents themselves (Murphy, Jordan, Hunter, Cooney & Casey, 2015; Nowell, Thornton & Simpson, 2011). Additionally, the majority of this work has been with people in the earlier stages of dementia and there remains a gap around understanding the experiences of residents with advanced dementia. My dissertation research is positioned to address these gaps through better understanding the experiences of older adults with advanced dementia living in long-term care, exploring their subjective experiences of meaningful engagement in a diversity of contexts. 1.3 Research Questions and Purpose In conducting this research study my goal was to explore the experiences of older adults living with advanced dementia in long-term care as they engaged in meaningful social interactions and activities, assuming an empirical approach to better understand what matters for people living with advanced dementia? To that end, I understood engagement as the act of being occupied or involved with an external stimulus (Cohen-Mansfield, Marx, Regier, & Dakheel-Ali, 10  2009). Additionally, social interactions and activities were conceptualized as meaningful when they were perceived as being significant to the individual (Phinney, Chaudhury, & O’Connor, 2007). Thus, when engagement was meaningful, individuals were motivated to participate in activities and relationships that are of personal significance or importance. My aim is that the findings from this research will contribute a rich and nuanced understanding of the experience of advanced dementia; articulate a careful and systematic examination of the experience and expression of meaningful engagement in advanced dementia; and consider methodological potential and possibilities related to research involving participants with advanced dementia. In contributing original knowledge to the existing scholarship regarding the lived experiences of people living with advanced dementia in long-term care, my hope is that nurses and other care providers will have increased sensitivity and awareness regarding the enduring potential and abilities of older adults with advanced dementia to continue to experience meaningful engagement. To that end, I sought to answer the following questions in my dissertation research: What can be learned from examining relational engagement in structured and unstructured activities that might inform our understanding of how to best support meaningful social interaction among long-term care residents living with advanced dementia? i. How do older adults living with advanced dementia in a long-term care setting experience and express meaningful social and emotional engagement? ii. How do family and staff carers understand and describe meaningful social and emotional engagement for older adults living with advanced dementia in a long-term care setting?  11  1.4 A Preview of the Following Chapters  In this dissertation I explore my experiences and the understandings I gained through conducting a study focused on meaningful engagement for older adults living with advanced dementia in a long-term care home. This study involved gathering data from residents, family members, and staff members at a long-term care home over a period of several months, utilizing a range of qualitative methods. A qualitative applied research design was chosen in light of the questions I asked in seeking the meaning-making in the participants’ experience within a social context (Maxwell, 2007). A brief description of each dissertation chapter follows.  Chapter two is a review of the relevant literature providing the foundation for understanding significant areas of scholarship underpinning my research. I include literature reflecting current perspectives on understanding dementia and people living with dementia; enduring abilities within advanced dementia symptoms; meaningful engagement through embodied and relational lenses; and, the implementation of arts-based programming in long-term care homes.  Chapter three provides an overview of the conceptual framework that underpins the methodology outlined in chapter four. My research is grounded philosophically in phenomenology, while I draw on ethnography for direction in my methodology. Chapter four describes the details of my research design, approach, and methods based on a focused ethnography methodology (Knoblauch, 2005).   Chapter five provides an in-depth interrogation of the tensions I grappled with as a nurse-researcher with insider status in my research setting. This reflexive accounting examines the 12  ways in which my roles and identities intersected and influenced both data gathering and data analysis.  Chapters six and seven explore the substantive findings from the data analysis. Chapter six focuses on the resident participant data gathered through a range of participant observation methods. This analysis highlights their enduring abilities in the face of substantive losses associated with advanced disease. In chapter seven I explore the data I gathered through family and staff member interviews, examining the ways that perspectives of both dementia and the person living with dementia mattered, as family and staff navigated ways of connecting the past and the present in engaging with the residents.     Finally, the discussion in chapter eight centers on the conclusions I drew from the findings, in relation to the research questions underpinning the study. This discussion is oriented around potential implications for practice and future research and concludes with an acknowledgment of some of the limitations of the study.      13  Chapter Two: A Review of the Literature 2.1 Introduction Ensuring quality of life for people living with dementia in long-term care homes poses  complex challenges for nurses and other carers (Beerens, et al., 2013). With increasing cognitive decline, people living with dementia struggle to communicate and behave in the usual ways. These differences are compounded when persons with dementia are marginalized by stigmas associated with increased age and decreased cognitive function (Brooker, 2004). Additionally, apathy is highly prevalent, especially for those with advanced disease, and typically, these individuals demonstrate diminished motivation and flattened affect, and spend long periods each day in passive activity (Brodaty & Burns, 2012; Cohen-Mansfield, et al., 2009). The extent that some of these changes are caused by the disease process itself and/or are responses to how people living with dementia are treated is not known. Residents living in long-terms care homes with advanced dementia symptoms face significant barriers to experience meaningful engagement (Gold, 2014; Hill, Kolanowski, & Kürüm, 2010). When viewed through a narrow reductionist lens, people living with advanced dementia are seen primarily in terms of loss and inability. In contrast, understanding the person more broadly, and recognizing the context of their relationships and experiences provides a lens for viewing persons with advanced dementia in terms of enduring potential and capability (Castillo, 2011; Hughes, 2001; Sabat, 2014).  It is this enduring potential, despite advanced dementia that underscores the importance for long-term care environments and care staff to better understand how to support meaningful activities and social relationships. To that end, there is growing interest in interventions such as arts-based and intergenerational programming, designed to 14  provide opportunities for engagement and social interaction in long-term care settings (Beard, 2012; Galbraith, et al., 2015).   The following literature review provides a foundation for understanding these areas of scholarship as they underpin my research study. My literature review begins with examining psychosocial approaches to understanding dementia, recognizing that the ways in which nurses and other carers frame dementia, and view people living with dementia is central to the nature of their caregiving relationships. I explore the ways that people living with dementia are understood in terms of perceived differences, as well as persistent personhood. Their ability to continue to engage in meaningful activities and relationships is discussed in terms of enduring abilities. In particular, participating in meaningful engagement is discussed in terms of embodied expressions and social connections. Finally, I review some of the current scholarship related to the implementation of arts-based programming in long-term care designed to promote meaningful social and emotional engagement opportunities for people living with dementia.  2.2 Understandings of Dementia  2.2.1 Taking the psychosocial turn. Current understandings of dementia have been influenced by both the biomedical model, which conceptualizes the person with dementia as a problem to be fixed, and a broader conceptual approach which seeks to understand persons with dementia within the context of their experiences, relationships, and broader social structures (Innes, 2009; O’Connor, et al., 2007).  A dominant early theme within the dementia literature focused on the clinical features of dementia and related care practices, for example, studies providing guidelines for the management of physiological symptoms and complications related to dementia such as pain and dysphagia (Chang, et al., 2009; Gallagher & Long, 2011). 15  However, there is also a growing recognition that the care relationship must be prioritized as much as the care tasks within the dementia scholarship (Edvardsson, et al., 2008; O’Sullivan, 2013).  These distinct approaches to understanding dementia are underpinned by dramatically differing ontological perspectives of the person with dementia, which subsequently directs dementia-care practice toward distinctly different outcomes.  The dominant biomedical model is strongly influenced by Cartesian dualism supporting separation of mind and body, and the reductionist approach of biological science to understanding the body, disease, and illness (Capra, 1982). This model is grounded in biological and medical sciences, viewing the person with dementia through a neuropathology lens. Through this lens, capability is linked with cognitive ability and subsequently progressive losses of memory and function are understood in terms of pathology where dementia is understood as a disease to be cured (Fox, 1989; Lyman, 1989). The quest for a cure played a central role in the prominence of the pharmaceutical industry in supporting and conducting research related to dementia treatment (Edvardsson & Nay, 2010; Gilleard & Higgs, 2000). In response to the medicalization of dementia at the end of the last century, anticholinesterase inhibitor medications emerged to address symptoms of dementia. These medications were marketed to address the cognitive decline in early to mid-stages of dementia and improve daily functioning. While they remain accepted and routinely prescribed, they have shown questionable and modest benefits in clinical trials (Smith, Kobayashi, Chappell, & Hoxsey, 2011; Yuill & Hollis, 2011). At present, the search for a cure and a pharmaceutical fix remains elusive.  While the biomedical approach to treating dementia has been the dominant force influencing dementia-care policy and practice throughout the latter part of the 20th century, in the absence of a cure, the gazes of nurses and other caregivers have increasingly turned to the 16  potential for non-pharmacological interventions to support well-being for persons with dementia (Deudon et al., 2009; O’Sullivan, 2013). Further, better understanding an individual’s lived experiences of dementia, through seeking and including the views and voices of persons with dementia has increasingly been recognized as central to ensuring quality of life (Beard, 2004; Harmer & Orrell, 2008; O’Rourke, et al., 2015). Thus, my research is underpinned by a psychosocial approach and privileges the subjective experiences of the participants living with dementia in seeking to better understand their dementia experiences.  In contrast to the limited and tenuous fit offered by the biomedical model, a psychosocial approach shifts the focus to a constructionist conceptualization where people living with dementia are viewed within the context of their experiences, relationships, and broader social structures (Beard, 2004; Lyman, 1989). This perspective emerged from the social sciences at the end of the 20th century and theorizes the person with dementia at the centre of related dementia practice and scholarship (Innes, 2009). Thus, the focus is shifted from the person with dementia, to the person with dementia. Both Thomas Kitwood (UK) and Steven Sabat (US) are recognized for their prominent roles in theorizing understandings of the self, the person, and personhood in dementia, supporting a philosophical and theoretical framework that underpins a contextual approach to understanding dementia within an environment of recognition and respect (Innes, 2009). In contrast to biomedical goals of order and control, this conceptualization of dementia focuses on issues of quality of life and well-being.  The psychosocial perspective emerged within social gerontology disciplines, in parallel with biomedical advances in identifying, diagnosing, and treating people with dementia. Social scientists looked beyond quantifying cognitive declines, recognizing the importance of understanding the personal and social aspects of persons living with dementia. The individual’s 17  personal history of roles and relationships was acknowledged to be central to understanding their experience of dementia (Kitwood, 1997; Sabat, 2001). Subsequently, people living with dementia were understood to be much more than just their cognitive functioning. Thus, the psychosocial perspective recognized the heterogeneity among people living with dementia, and the limitations of standardized scoring and staging to effectively characterize their needs (Baars & Phillipson, 2014). Scholarship emerging from the psychosocial perspective has also taken a humanistic stance, asking questions regarding the meaningful experience of ageing (Baars & Phillipson, 2014; Minkler, 1996). This humanistic focus is reflected in Kitwood’s call to value and respect persons with dementia (Dewing, 2008; Kitwood, 1997). Social barriers that marginalize people living with dementia and impede opportunities for meaningful engagement reflect a lack of understanding related to their subjective experiences (Thomas & Milligan, 2015).  Thus, recognition of the need to better understand the lived experience, the day to day personal experience of living with dementia, has gained momentum in the dementia literature (Beard, 2004; O’Connor et al., 2007; Phinney, 2010; Wolverson, Clarke, & Moniz-Cook, 2016). This literature underscores the need to understand persons with dementia contextually and recognizes the importance of seeking their perspectives in understanding their experiences of dementia.  Social gerontology has continued to evolve influencing both our understanding of ageing processes and issues, as well as directions for dementia scholarship and practice. Within this literature a critical lens has increasingly been used to move beyond understanding the social constructions of ageing to facilitating change (Minkler, 1996). This scholarship seeks to explore and address the constraints of political economy, recognizing that the issues and problems that accompany ageing are constructed by social institutions driven by political and economic forces 18  (Baars & Phillipson, 2014; Minkler, 1996). Within a neoliberal political landscape where individual autonomy and choice is valued, ageing adults and particularly those people living with cognitive deficits are marginalized (Brooker, 2004). Critical gerontology has focused attention on concepts of power, inequality, and action related to ageing; these critiques resonate powerfully for people living with dementia (Dannefor, Stein, Siders, & Patterson, 2008). For individuals with advanced disease living in long-term care, issues of power and choice are foundational drivers for daily care practices, influencing both the actions of the carers and the experiences of the residents. The influence of critical gerontology can be seen in emerging dementia scholarship, particularly as it relates to policy and practice development. Innes and Manthorpe (2013) point to the roles of broad social and structural factors in the experience of dementia, and the concomitant link between conceptualizations of dementia, and policy and practice directions. For example, the social disability model, which arose in the 1980s, has recently been applied to dementia-care. This model evolved from a physical disability perspective in embracing a broader psychosocial consideration of disability with resultant applicability for people living with dementia; it has been championed in the UK, supporting goals of inclusion, and empowering persons with dementia (Gilliard, Means, Beattie, & Dakin-White, 2005; Thomas & Milligan, 2015). Inclusion values the subjective lived experience of dementia, considering the views and perspectives of individuals as they experience the dementia trajectory.  While the personhood lens shifts the focus to the person living with dementia and recognizes the importance of hearing their perspectives, the apolitical nature of personhood has been viewed as limiting. In response, Bartlett and O’Connor (2007) called for a wider lens on the experiences of people living with dementia that recognizes both their personhood and 19  citizenship. They point to the limitations of personhood in terms of understanding the broader social structures, promoting agency, and examining issues of power differential related to the dementia experience. Drawing on the social disability model, they conceptualized people living with dementia as social citizens calling for their inclusion and empowerment (Bartlett & O’Connor, 2010). The concept of social citizenship has been taken up in the development of Dementia Friendly Communities aimed at eliminating stigma and empowering people living with dementia (Alzheimer’s Disease International, 2016).  People living with dementia have become actively engage in these initiatives, demonstrating their social citizenship through their advocacy work. Seetharaman and Chaudhury (2020) highlighted the benefits of their active involvement both personally and in achieving broader objectives related to societal dementia strategies. Kontos, Miller, and Kontos (2017) also advocated for a citizenship lens. Focusing on people living with severe cognitive impairment in long-term care homes, they proposed a relational citizenship model premised on interdependence and reciprocity supporting people living with dementia as active partners in their own care. This model builds on a conceptualization of embodied selfhood, providing a lens for understanding the creative and sexual expressions of people living with dementia in long-term care homes.  The psychosocial turn has continued to evolve. Consequently, conceptualizations of people living with dementia as being people worthy of respect and value, with the rights and responsibilities afforded to citizens have had powerful implications for dementia research and practice. Increasingly there is recognition of the importance of including their voices and supporting their actions.          2.2.2 Perceived difference. Humanistic and inclusive approaches to understanding the dementia experience are challenged by representations of dementia in contemporary and popular 20  culture that are value laden and typically evoke negative emotional responses (Zeilig, 2014). Negative and fear inciting metaphors position persons with dementia within an impending disaster, with the rest of society on the outside fearfully looking in.  From this perspective, dementia is variously referred to as a crisis, a plague, and an epidemic. Zeilig (2014) points to the links between these negative metaphors and stereotypes, and the creation of distance distinguishing us from them. Behuniak (2011) explores the extent to which these metaphors create, and are created by fear, in her comparison of zombies with persons living with dementia. Images of persons with dementia as the living dead or walking corpses serve to dehumanise persons with dementia in direct contrast to Kitwood’s humanistic approach (Dewing, 2008; Herskovits, 1995).  The consequences of policy and practice guided by fear rather than sympathy or empathy, have significant negative impacts on people living with dementia, privileging control over care. The scholarship examining dementia-care for individuals with advanced dementia symptoms frequently use terms describing frightening and negative aspects of the disease – aggressive behaviours; fits of anger; hostile attitudes; severely limiting; incurable; unprecedented and overwhelming. These descriptors emphasize the biomedical model with its focus on cure and control, associating persons with dementia with dysfunction and deviance (Innes, 2009). This view takes a narrow focus, understanding the dementia-care relationship in terms of clinical needs and outcomes as opposed to considering the broader needs of meaningful engagement and social interactions that support well-being. Further, studies examining behavioural and psychological symptoms of dementia (BPSD) typically focus on the caregiver role, and access the caregiver perspective (Chang et al., 2009; Gallagher & Long, 2011; Karger, 2015). Consequently, within this body of literature, it is typically the benefits to the caregiver, in 21  terms of decreasing the burden and cost of caring for people living with dementia, that are emphasized (Cerejeira, Lagarto, & Mukaetova-Ladinska, 2012).  Within this lens, the reactions and behaviours of the residents are pathologized and viewed as symptoms of a biomedical disorder. Dupuis, Wiersma, and Loiselle (2012) cautioned that the pathologizing and problematizing of behaviours limits the ability of staff members to understand the underlying meanings, leading to characterizing behaviours as challenging and implementing a crisis management approach. Naue and Kroll (2008) also discuss the prevailing images of dementia, primarily Alzheimer’s dementia, within a frame of difference and otherness. Fear and anxiety related to understanding persons living with dementia as different from other persons, is particularly problematic for individuals with moderate to advanced dementia where the differences appear to be greatest. Othering has been found to negatively impact care relationships within the practice setting when nurses and other carers perceive persons with dementia as dehumanised, unable to make meaning and no longer one of us (Edvardsson, et al., 2008). Staff struggle to engage in relationships when they believe the person is lost (Doyle & Rubinstein, 2013). Understanding persons living with dementia through a lens of difference and loss is particularly problematic for the older adults with advanced dementia at the heart of this proposal, creating a barrier to addressing their enduring need and potential for meaningful engagement.           2.2.3 Persistent personhood. As discussed above, a dominant theme within the dementia scholarship builds on perceptions of difference and loss, recognizing the person with dementia as lost when their cognitive abilities decline - the person is lost while their body lives on. This view of the person privileges the ability to reason and reflect, and the ability to maintain personal identity through psychological continuity and connectedness (Hughes, 2001). This 22  conception has significant and negative implications for persons living with dementia who progressively experience losses of memory, cognitive ability and communication. When nurses and carers believe that the person living with dementia is lost, there is a risk of the accompanying assumption that their life is meaningless (Edvardsson, et al., 2008). Communication and memory losses engender assumptions that everyday interactions and social engagement are no longer relevant or meaningful (Beard, 2004). In contrast, views of the person with dementia that continue to recognize their personhood serve to acknowledge and support their enduring potential for engaging in meaningful social interactions and activities. Dementia studies suggest that persons living with dementia, with symptoms ranging from mild to severe, continue to construct identities through social and embodied interactions, where they continue to interact with meaning and purpose (Caddell & Clare, 2010). Thus, viewing persons with dementia as maintaining their personhood has important positive consequences for nurses and other carers. When not fully understood as persons, they risk being objectified in terms of care tasks, discounting their potential to be included in relationships and the larger social structures (Beard, 2004; Edvardsson, et al., 2008). In contrast, understanding persistent personhood supports meaningful social and emotional engagement, and inclusion where meaningful interactions are associated with positive implications for supporting well-being and quality of life (Zeilig, 2014).  2.2.4 Person-centred approaches to care. As discussed in the preceding sections the shift to a psychosocial approach has had a significant impact on the ways in which both dementia, and persons with dementia are understood. Subsequently, this shift has had a profound impact on current directions for dementia scholarship and practice. The person-centred care approach to providing dementia-care has been an important outcome of these conceptualizations. 23  Since Kitwood’s first references in 1988, person-centred care has come to be broadly synonymous with good dementia-care in the western world (Brooker, 2004).  Despite a lack of consensus regarding its definition and implementation, person-centred care has been embraced and continues to play a pivotal role in the evolution of dementia practice and the development of related nursing care models (Fazio, et al., 2018; McCormack, et al., 2012; Røsvik, et al., 2013). The person-centred approach to dementia-care emerged largely through the early work of Kitwood in the 1980s and 1990s. At the heart of this model of care is the person. Kitwood (1997) conceptualized each person as unique; he viewed each person in terms of their unique history influenced by multiple aspects such as culture, temperament, social class, lifestyle, values, and beliefs. Additionally, he viewed each person as capable of meaning-making and action (1997). The concept of personhood is also central to Kitwood’s conceptualization of person-centred care. Kitwood acknowledged personhood’s roots in religious, ethical, and social psychology discourses joined with a thread of shared meaning; he defined personhood as a status bestowed on one human being from another (Kitwood, 1997).  This conceptualization of personhood draws on the work of German philosopher Martin Buber from the 1920s, emphasizing the important relational nature of interactions between persons with dementia and others (Kitwood, 1997). The nature of the care relationship is central to the dementia experience and is foundational within the person-centred care models developed to meet the needs of persons living with dementia. Within the practice setting, the philosophy of person-centred care has led to the development of nursing models that, while distinct, all share values which: respect persons with dementia and their caregivers; treat people as individuals; look from the perspective of the person with dementia; and create positive social environments (Brooker, 2004; McCormack, 2004).   24  Despite its wide-spread uptake, person-centred care remains difficult to enact in acute and long-term care settings (Colomer & de Vries, 2016; Du Toit, Shen, & McGrath, 2019; Rockwell, 2012).  Barriers to person-centred approaches centre on issues of structure and economy, and negative views of persons with dementia in terms of loss, dependence, and difference. Healthcare structures and policies are typically grounded in the biomedical model where the environment and organizational strategies challenge a person-centred approach (Rockwell, 2012). A focus on the burden of escalating financial costs in response to increasing numbers of persons with increasing dependence, forms an economic equation that supports practice settings where staffing levels and composition, and models of care create barriers for nurses to implement a person-centred approach (O’Sullivan, 2013).   Person-centred care is further challenged by negative attitudes held by both the public and professionals (Brooker, 2004; Doyle & Rubinstein, 2013). Dehumanizing images support perceptions of persons with dementia in terms of difference and otherness and become barriers for nurses in providing dementia-care (Doyle and Rubenstein, 2013; Naue & Kroll, 2008). The extent to which persons with dementia have been othered and stigmatised has been recognized with the term dementia-ism; this term was coined in response to stereotyping based on cognitive impairment, and perceived incompetence and disability related to the diagnosis (Adelman, et al., 2000).  In contrast to dementia-ism, person-centred care approaches draw on understandings of persons with dementia as full human beings worthy of respect with the capacity to communicate and experience meaning in the face of progressive disease (Kitwood, 1997; Sabat, 2001). Conceptualizing person-centred care has influenced theorizing and development of nursing practice and care models promoting a progressive, positive approach to meeting the needs and supporting well-being for individuals with advanced dementia living in long-term care.  25  With the predominance of long-term care residents having a diagnosis of dementia, implementation of person-centred care approaches has been an important focus within long-term care homes over the past two decades (Colomer & de Vries, 2016; Doyle & Rubinstein, 2013; Fazio, et al., 2018). While I recognize the significance of economic and structural barriers in the struggle to implement person-centred care (Rockwell, 2012), it is the attitudinal barriers that are most germane to my research (O’Sullivan, 2013; Stein-Parbury, et al., 2012). Negative attitudes and understandings of persons living with dementia living in care, are barriers to person-centred care and barriers to supporting environments where persons with advanced dementia can experience meaningful social and emotional engagement. The following section examines the potential this philosophical and practice approach affords to people living with advanced dementia in long-term care through recognizing their enduring abilities to experience meaningful engagement. 2.3 Enduring Ability in Advanced Dementia     2.3.1 Advanced dementia. My study focuses on the experiences of people living with advanced dementia in a long-term residential care home, where these individuals present complex communication and care challenges. Advanced dementia has largely been taken up in the literature in terms of difference and loss where at the extreme, the person with dementia is dehumanized, perceived to be lost, leaving only the shell of a body (Herskovits, 1995; Hughes 2001). Their progressive declines and losses support categorization in terms of stages, where persons living with dementia are designated as having mild, moderate, or severe disease symptoms. Both the terms advanced dementia and severe dementia are commonly used to describe individuals with significant functional losses such that they require assistance with personal care needs including care tasks such as toileting and bathing, as well as significant 26  cognitive losses as evidenced in loss of memory and communication skills. My research seeks to better understand their experiences of dementia, particularly their experiences of meaningful engagement. People living with dementia typically undergo standardized testing as a way of staging their disease severity. Quantitative measures record only a snapshot in time to the exclusion of a broader, more holistic understanding of the person (Sabat, 2014). People living with advanced symptoms of dementia, where cognitive and verbal skills are most severely challenged, achieve low scores in cognitive testing; these scores provide only limited information and insight into their needs or abilities. For these individuals, direct observations that understand their historical, psychological, and embodied interactions with the world become increasingly important (Hughes, 2001; Kontos, 2004; Sabat, 2014). Thus, in the absence of a broad contextual understanding of the person at advanced stages of dementia, there is a risk of not recognizing the intact and enduring psychological, emotional, and cognitive abilities of these individuals (Sabat, 2014).   2.3.2 Apathetic assumptions. In addition to the concepts of loss and difference, apathy has also been examined in the dementia scholarship, particularly as it relates to passivity in people living with advanced dementia in long-term care homes (Starkstein, et al., 2001; Treusch, et al., 2011). Apathy has generally been understood from a biomedical perspective as a major clinical feature of dementia, with an estimated 50-70% of persons living with dementia experiencing apathy (Brodaty & Burns, 2012; Politis, et al., 2004). It has been defined as a lack of motivation as evidenced by decreased interest and flattened emotions that can arise from a variety of medical, psychiatric, and neurological conditions (Marin, 1990). For individuals with dementia it is thought to be important to distinguish apathy from depression and symptoms of 27  cognitive impairment and delirium (Marin, 1990). Apathy is understood as a complex syndrome with emotional, cognitive, and behavioural features associated with neurological, psychological, pharmacological, and environmental factors (Brodaty & Burns, 2012).  It is also negatively associated with quality of life and promotes feelings of helplessness on the part of family and carers (Politis, et al., 2004; Treusch, et al., 2011). Although apathy is common in dementia it is often overlooked, subsequently there is limited research in the literature specific to its causes, consequences, and treatment (Brodaty & Burns, 2012).  Institutionalization in long-term care homes has been found to promote apathy related to a lack of opportunity for engagement in meaningful activities. The effects of apathy are seen to be compounded in residents living with advanced dementia who experience loss of function, increased dependency, and decreased self-initiative (Harmer & Orrell, 2008). Increasingly, there has been a move away from a biomedical approach to understanding and addressing apathy, as non-pharmacological interventions have been explored to address lack of motivation and disengagement (Politis, et al., 2004; Treusch, et al., 2011). To that end, interventions promoting social inclusion through a range of activities involving reminiscence, music, art, dance, and exercise are being implemented to address symptoms of apathy in long-term care homes (Beard, 2012; Zeilig, et al., 2014). This programming is built on evidence that the potential for meaningful engagement in activities and relationships persists in people living with dementia, including those with advanced symptoms (Ericsson, Kjellström, & Hellström, 2011; Hiller & Stokes, 2012; Cohen-Mansfield, et al., 2012; Materne, Luszcz, & Goodwin-Smith, 2014).   2.3.3 Enduring abilities. Meaningful engagement has been associated with quality of life for people living with dementia in studies exploring the experiences of people living with dementia as they engage in a range of activities across community and institutional settings 28  (O’Rourke, et al., 2015; Smit, et al., 2016. Dementia programming is designed to engage the participation of people living with dementia; programming goals are typically either therapeutic related to addressing behaviours seen as challenging and improving care or aimed at supporting quality of life and well-being (Beard, 2012). For people living in long-term care homes, significant functional and cognitive losses precede their admission and the culture of care typically reinforces dependency (Harmer & Orrell, 2008; Slettebo, 2015).  These losses are greatest for people living with advanced dementia and subsequently, they are noted to be the least able to initiate social interactions and activities (Hiller & Stokes, 2012; Raber, Teitelman, Watts, & Kielhofner, 2010; Sullivan & Asseline, 2013).  Thus, participating in dementia programming is increasingly challenging as people experience more advanced symptoms of dementia.   For residents living with advanced dementia, decreased functional, communication, and cognitive abilities negatively impacts their engagement in activities and relationships. They have been observed to demonstrate the least ability to initiate activity or social interactions and significant dependence on others for those opportunities (Kuosa, Elstad, & Normann, 2015; Smit, et al., 2016). This is compounded when staff carers have limited understandings of what constitutes meaningful activity for residents in long-term care (Colomer & de Vries, 2016; Harmer & Orrell, 2008). For example, in a study exploring staff initiated meaningful moments with residents with advanced dementia, staff reported feeling time pressured and ambivalent regarding the significance of interacting with residents in activities focused on well-being as opposed to activities focused on care (Hiller & Stokes, 2012). Similarly, Colomer and de Vries (2016) reported that while staff espoused a person-centred approach, their practice was driven by availability of time and resources. A recent review by Broome, Dening, Schneider, and Brooker 29  (2017) highlighted the need for care staff training to improve their abilities to communicate and engage with residents in arts-based programming. Thus, the inability of people living with advanced dementia to initiate interactions and activities, and the lack of time and insight among staff carers regarding ways to support meaningful engagement are critical factors in addressing passivity and disengagement.  Subsequently, in supporting the inclusion of people living with advanced dementia in programming activities and interactions, it is critical that staff understand their enduring abilities that support experiences of meaningful engagement. While there is limited research focused specifically on the experiences of people living with advanced dementia, the literature points to their abilities to connect and participate with others, to communicate their emotions, and to express interest and pleasure in activities. For example, Sabat and Collins (1999) observed the abilities of people living with advanced dementia to express a range of emotions, demonstrate socially sensitive behaviours, initiate social contact, and express creativity. Similarly, in a study examining the impact of staff carers singing during personal care, Götell and colleagues (2009) found that residents living with advanced dementia maintained the ability to express and perceive a range of emotions. Person and Hanssen (2015) also found that despite advanced disease, residents responded positively to music and remained able to express their experiences of pleasure related to social connections. Similarly, Cohen-Mansfield and colleagues (2012) found that engaging in social interactions and activities built around music elicited the strongest indicators of pleasure among residents. Post (2013) described a comprehensive and complex range of enduring abilities demonstrated by people living with advanced dementia reflecting creativity, relationality, emotional expression, rhythm, and tactile sensations – abilities that would support engagement in a range of activities and social interactions.   30  Viewing people living with advanced dementia through a lens of personhood with the enduring potential to engage in meaningful interactions and activities has significant positive implications for supporting their well-being and quality of life while living in long-term care homes (O’Rourke, et al., 2015). 2.4 Meaningful Engagement My research questions are broadly constructed to understand how people living with advanced dementia experience meaningful engagement. While there is no single definition of meaningful engagement, in this dissertation research I understand engagement to involve the act of being occupied or involved with an external stimulus (Cohen-Mansfield et al., 2009). However, I am seeking a rich understanding of engagement, extending beyond simply being busy or occupied (Chung, 2004). Thus, I understand that when engagement is meaningful, individuals are motivated to participate in activities and relationships that are of personal significance or importance (Phinney, et al., 2007).  Within the dementia literature there has been a strong association between experiences of meaningful engagement and quality of life (Beard 2004; O’Rourke, et al., 2015; Roland & Chappell, 2015). Consequently, there has been significant interest in better understanding what constitutes meaningful relationships and activities (Han, Radel, McDown, & Sabata, 2016; Kuosa, et al., 2015; Milne, 2011; Nowell, et al., 2011). In particular, for people living in long-term care settings and their carers, the question what makes live worth living? becomes increasingly difficult to answer as dementia progresses (Brooker, 2008). This question has been examined from a variety of angles.  31  Studies have examined experiences of meaningful engagement for people living with dementia drawing on the perspectives of family members. Kuosa and colleagues (2015) found that family members described meaningful activities in terms of what has been meaningful in the past. Family members have also described benefits related to engaging in activities in terms of social connectedness, physical health, cognitive stimulation, and caregiver respite (Roland & Chappell, 2015; Tsunaka & Chung, 2012). Quantitative approaches to examining the dementia experience related to meaningful engagement have utilized a variety of measures to evaluate resident behaviours and responses during a range of activities and dementia programming. For example, results from Tak and colleagues (2016) found engaging in activities was related to positive affect and care relationships. Materne and colleagues (2012) found increased engagement in a sensory stimulation programme was associated with increased positive mood for residents with advanced dementia.  Other studies have compared the perspectives of caregivers with the subjective perspectives of people living with dementia. A comparison of staff and resident ratings of a small group activities programme related to a picture book, found staff ratings of meaning were higher than the residents (Mansbach, Mace, Clark, & Firth, 2017). Similarly, a large mixed-methods study examining benefits of a creative arts programme found higher positive ratings among staff compared with residents (Windle, et al., 2018). Further, Harmer and Orrell (2008) found that while family and staff carers viewed activities that maintained physical abilities as meaningful, residents rated activities addressing their psychological and social needs higher. These differences have resulted in a growing interest in eliciting the perspectives of people living with dementia regarding their experiences of meaningful activities and interactions (Milne, 2011; Phinney, et al., 2007; Tak, et al., 2015).  32  Positive experiences and the benefits associated with a range of different activity programming have been linked with quality of life. In contrast, the lack of occupation and active participation has been associated with decreased functional status, difficult behaviours, and social isolation (Conti, Voekle, & McGuire, 2008; Cruz, Marques, Barbosa, Figueredo, & Sousa, 2013). Further, when residents are not participating in structured activities they are typically described as unoccupied or passively engaged (Conti, et al., 2008; Tak, et al., 2015). Problematizing occupation and engagement in this way poses a unique challenge for people living with advanced dementia. Being occupied or participating in activity is particularly challenging for people living with advanced dementia. As dementia progresses, increased cognitive and functional losses make communicating and independently negotiating and initiating meaningful experiences increasingly difficult (Kuosa, et al., 2015; Smit, et al., 2016). Thus, their engagement in meaningful activities is reliant on availability of opportunities and the support of others. The literature related to residents’ experiences of meaningful engagement in long-term care homes typically examines stand-alone activities and the activities within larger programming initiatives.  A wide range of activities have been studied regarding promotion of meaningful engagement, including activities associated with structured recreation programming; everyday activities of daily living; social involvement; intergenerational programming; and arts-based initiatives (Chung, 2004; Galbraith, et al., 2015; Han, et al., 2016; Jarrott, Gozali, & Gigliotti, 2008). Awareness of resident preferences and past hobbies and interests were found to be important factors in designing activities found to be beneficial, eliciting positive responses from residents (Han, et al., 2016; Kuosa, et al., 2015; Tak, et al., 2015). Programming built around music was also highlighted in many studies, identifying benefits such as  increased 33  communication, positive affect and social interactions (Broome, et al., 2017; Han, et al., 2016; Zeilig, et al., 2014). Overall, the most frequently identified factor associated with resident experiences of meaningful engagement in the dementia literature relates to benefits associated with opportunities for social connections and inclusion.   2.4.1 Social connections. The importance of being socially connected in meaningful relationships with others has been well documented in the dementia scholarship. Sabat and Gladstone (2010) argued that people living with dementia remain able to interact effectively with others and make sense of their social worlds through experiencing and expressing a range of emotions including affectional warmth, humor, creativity and self-expression. While the losses associated with dementia challenge their relationships with family and caregivers, people living with dementia have been understood to continue to maintain the ability to engage relationally long into the progression of disease symptoms (Post, 2013; Woods, 2012). Similarly, Boyle and Warren (2017) observed social interactions as intersections where emotions, feelings, and perspectives could be expressed despite advanced dementia.  For people living with advanced symptoms of dementia, meaningful engagement has typically been understood in terms of increased positive behaviours and emotions where affect and engagement are often compared in response to different programming interventions (Cruz, et al., 2013; Götell, et al., 2009; Materne, et al., 2014). In studies exploring their experiences of meaningful engagement, opportunities for social connections are highly ranked. For example, in a study comparing the responses of residents living with advanced dementia to different stimuli, the residents ranked live human social stimuli highest based on indicators of pleasure and enjoyment (Cohen-Mansfield, et al., 2012). Similarly, Smit and colleagues (2016) evaluated the experiences of residents with moderate to very severe symptoms of dementia participating in a 34  variety of activities typically offered in long-term care homes (e.g. card games, art, music, conversation groups). They found residents demonstrated significantly increased positive involvement in activities that were associated with social connections. Further, Kuosa and colleagues (2015) interviewed the family members of residents living with advanced dementia; these family members pointed to the reciprocal nature of activities that the residents found meaningful, highlighting the importance of having opportunities to do things with others.   Milne (2011) identifies meaningful relationships as key to experiencing quality of life for individuals living in long-term care homes. This underscores the importance of understanding the nature of meaningful activities and interactions for residents living with dementia (Milne, 2011). In their review of the literature related to quality of life, Sullivan and Asselin (2013) observed that while this construct has typically been intuitively understood and poorly defined, experiencing social support and social interaction was a common theme throughout all of the studies. It follows that in the absence of opportunities for meaningful social connections, quality of life is threatened for people living with dementia. Slettebo (2015) cautioned that residents living in long-term care homes expressed feelings of loneliness and identified a lack of opportunity for social interactions. Further, in a study comparing quality of life for residents living with differing levels of cognitive impairment, those residents living with advanced dementia identified having the least amount of social connections and expressed the greatest sense of loneliness and desire for human contact (Cahill & Diaz-Ponce, 2011). Thus, the importance of having opportunities for meaningful social connections throughout the dementia experience supports the quality of life for people living with advanced dementia through their increased involvement in activity programming, increased experiences of pleasure, and decreased experiences of loneliness and social isolation. 35  2.4.2 Embodied connections. Within dementia scholarship, the concept of embodiment has provided a lens through which people living with dementia are understood to engage in meaningful ways with the world around them (Downs 2013a; Kontos & Martin, 2013). Increasingly, embodiment has been recognized as a way to understanding the experiences of people living with dementia, understanding their thoughts, feelings, and intentions through their gestures, movements and expressions (Coaten & Newman-Bluestein, 2013, Hughes, 2014a; Phinney, 2002). Thus, embodiment has been understood to communicate insights into the everyday experiences, interactions, and understandings of people living with dementia (Hydén, 2013; Kontos, 2004). Embodiment has been explored as a vehicle for understanding communication and underlying social interactions despite the linguistic and communicative difficulties that define advanced dementia. Hydén (2013) argues that people living with dementia are more competent and agentic than they appear based on their linguistic competency. He analysed joint story telling between couples where one partner had moderate to advanced dementia, and their gestures were understood as embodied memories of past events. Viewed through an embodiment lens, their story telling was less about text in dementia, and more about sustaining relationships.  Ellis and Astell (2010) also explored embodiment as a communication vehicle with people living with dementia. They conducted a study involving Intensive Interaction as a method to communicate with people living with advanced dementia demonstrating very limited verbal communication ability. This intervention involved responding to participants living with dementia in ways that were familiar and meaningful to them, utilizing turn-taking, facial expressions, eye gaze, and sounds. Their findings pointed to the continued desire and ability of these individuals to communicate and supported their potential for co-creating personhood 36  through social interactions. These findings highlight the potential for staff carers to utilize embodied forms of communication in forming meaningful social connections with people living with advanced disease. A lens of embodiment has been used to recognize and understand the enduring ability for creative self-expression in people living with dementia. For example, Phinney (2014) explored how people living with dementia engaged in meaningful activities, where those activities were experienced and expressed in embodied ways. She described how people living with dementia, despite their increasing dependence on others to provide opportunities, continue to feel the urge to engage in familiar creative and musical activities from their pasts (Phinney, 2014).  Embodied creative expression in people living with dementia has also been explored related to music and dance. Acknowledging that musical perception has largely been understood in terms of cognitive ability, Kontos (2014) explored how spontaneous musicality is expressed in bodily way. She analysed a case study highlighting the enduring ability of a person living with dementia to improvise musically after no longer being able to read music, pointing to the body’s primordial potential in knowing with reflecting. More recently, Kontos and Grigorovich (2018) explored dance therapy as an intervention supporting embodied and creative self-expression for people living with dementia. Dance has been found to provide important opportunities for relationality where people living with dementia engage in bodily and meaningful ways with others (Coaten & Newman-Bluestein, 2013; Kontos & Grigorovich, 2018). Understanding dementia through a lens of embodiment has had important implications for both the ways dementia has been conceptualised, and the ways dementia care is practised (Martin, Kontos, & Ward, 2013). Hydén (2018) conceptualized selfhood in dementia through the 37  embodied or performative ways that people living with dementia communicate their stories. He argued that the memories that constitute selfhood are procedural memories that are communicated through the bodily habits and gestures that reside in the body. This understanding helps to mitigate the impact of memory loss on selfhood where those who share the social network of people living with dementia, also become bearers and tellers of these stories and in this way share in constituting their selfhood (Hydén, 2018).  Kontos (2004) also conceptualized selfhood as embodied, understanding the basic bodily movements and communicative gestures of people living with dementia as pre-reflective behaviours reflecting a continuation of their selfhood. Understanding the meaning in the embodied ways that people living with dementia express themselves supports carers in building relationships and meeting their needs, ultimately improving quality of care (Downs, 2013a; Kontos & Martin, 2013).  2.5 Art-Based Interventions.  As outlined in the preceding sections, the relationship between meaningful opportunities in supporting quality of life has been well documented within the dementia literature. This has spurred increased interest in a wide range of arts-based interventions over the past two decades (Beard, 2012; Rylatt, 2012; Zeilig, et al., 2014). Increasingly, arts-based interventions are being utilized with people living with dementia across the trajectory of their disease, both in the community and in long-term care homes with goals of facilitating creative expression, and meeting physical, emotional, intellectual, and social needs (Bellas, et al., 2019; Swann, 2012; Windle et al., 2018). For people living with advanced dementia perceived to be experiencing apathy or difficult behavioural symptoms, arts-based interventions have been explored to provide alternatives to pharmacological interventions (Chappell, Kadlec, & Reid, 2014; Holmes, Knights, Dean, Hodkinson, & Hopkins, 2006; Treusch et al., 2011). 38  Beard (2012) conducted a review of the literature related to arts-based therapies. She identified two streams of arts-based research: studies focused on reducing behavioural and psychological symptoms of dementia, and studies with outcomes related to enrichment and subjective well-being. She reviewed a wide range of interventions including music therapy, visual arts therapies, drama therapy, dance movement therapy, mixed or miscellaneous art therapy, and activity therapy. Drama and dance movement therapies were most likely to focus on process variables such as pleasure, enrichment, and meaning, while music and visual arts therapies focused on outcomes such as addressing problem behaviours (Beard, 2012). Zeilig and colleagues (2014) also reviewed the literature related to the use of arts-based approaches for people living with dementia in the United Kingdom. Their review focused on the use of participatory arts (i.e. creative or performing arts) as opposed to arts-based interventions; the studies reviewed were underpinned by an understanding that persons living with dementia maintain residual creative ability (Phinney, 2014; Zeilig, et al., 2014). Participatory arts have been seen to provide meaningful engagement, improve mood, support social interactions, and provide sensory stimulation through participation in activities such as singing and dancing, as well as engaging in activities associated with cultural museums and art galleries (Zielig, et al., 2014).  Both the reviews by Beard (2012) and Zeilig and colleagues (2014) called for more rigor in studies exploring benefits of arts-based interventions, as well as longitudinal studies with more efficacious evaluative methods. Recently, Windle and colleagues (2018) conducted a longitudinal study of a mixed-methods visual arts programme across a variety of settings (i.e. long-term care, acute care, community) with the aim to address the identified gaps in research-based evaluation of arts-based programming. Their results pointed to significant improvement in 39  domains such as interest, pleasure, and self-esteem, with overall findings supporting the integration of arts-based activities in care settings for people living with dementia.  Increasingly, arts-based activities and interventions have provided the backdrop for studies stepping outside of more traditional explorations of the benefits to the quality of life and well-being for people living with dementia. For example, Dupuis, Kontos, Mitchell, Jonas-Simpson, and Gray (2016) explored the power of the arts as a transformative space to challenge dementia stigma and support citizenship. Bringing together people living with dementia with visual and performative artists, and researchers in a workshop to co-create narratives and artistic reflections of their dementia experiences, the researchers argued that the collective art-making experience provided a transformative and positive space (Dupuis, et al., 2016). Bellas and colleagues (2019) also took an innovative approach in understanding the role of arts in dementia, arguing that creativity needs to be understood not only in terms of structured arts-based programming but also in terms of everyday life. They proposed a critical conceptualization of creativity in dementia that includes a focus on everyday creativity; power relations; ways to operationalize creativity; sensory and affective experiences; difference; and reciprocity. Additionally, Jeong (2019) also moves beyond an evaluation of the benefits of arts-based activities in exploring how a couple relationship impacts and influences their creativity. Through an arts-based collaborative ethnographic study she explored the experience of creativity for residents living with dementia in long-term care. Focusing on the experiences of a couple, she describes the affective dimension of creativity observing how the embodied and affective practises of couples impact the experience of creativity. The literature identifies a wide range of potential benefits for people living with dementia in long-term care through the integration of arts-based interventions. However, the success of 40  this programming is largely dependent on the knowledge and resources available to care staff. In particular, staff carers often find it difficult to engage residents living with advanced dementia in meaningful interactions and activities (Hiller & Stokes, 2012; Smit, et al., 2016). In settings that do not employ creative arts therapists, implementing arts-based interventions is challenging for care staff. A study exploring care staff attitudes towards music therapy showed that while staff had broad positive understandings of the benefits of music therapy, they needed specific knowledge and training to support and encourage their engagement in implementing music programming (Sung, Lee, Change, & Smith, 2011). Similarly, a recent review regarding the role of care staff and the creative arts in long-term care homes, highlighted both the potential for staff and residents engaging in creative arts programming to facilitate care relationships and practices, as well as the need for care staff training and education related to arts-based programming (Broome, et al., 2017).  Importantly, increased knowledge and understanding of the potential that arts-based interventions hold for building relationships, interconnectedness, and communication supports successful person-centred care approaches in dementia care (Ahessy, 2017; Vernooij-Dassen & Moniz-Cook, 2016). 2.5.1 Music therapy. Music therapy is the most common form of arts-based intervention for people living with dementia described in the literature (Ahessy, 2017; Beard, 2012). This was evident in my research setting where music therapy was a central part of daily activity programming for the residents, directed by a full-time music therapist. A wide range of activities and goals are associated with music therapy in the dementia literature. Most typically, music therapy interventions are built around engagement in movement, rhythm, and singing (Beard, 2012). Programme goals range from decreasing behavioural and psychological symptoms of 41  dementia to increasing conversation, experiences of pleasure, and social inclusion (Beard, 2012; Zeilig, et al., 2014). Positive outcomes associated with music therapy related to positive affect and engagement are well documented (Ahessy, 2017). A study by Holmes and colleagues (2006) compared the experience of listening to recorded versus live music for people living with moderate to advanced dementia in long-term care. Their results demonstrated live music to have greater positive effects on resident affect. Live music in the form of caregiver singing was also found to have positive effects on residents. Similarly, Götell and colleagues (2009) found that caregiver singing during morning care produced more positive outcomes when compared to background music. Their results found that when caregivers sang with residents living with advanced dementia, there was improved communication and increased expressions of positive mood and emotions. Hammar, Emami, Götell, and Engström (2011) drew on this work; their findings also supported music therapy caregiving, caregivers singing for or together with residents during morning care routines, as an effective nursing intervention in creating a more positive experience of morning care for residents. There is a relational aspect to music therapy, in addition to the individual response. For example, the residents’ positive responses to music therapy caregiving included singing along with the caregivers (Hammar et al., 2011). Camic, Williams, and Meeten (2013) explored the benefits of a community singing group where people living with dementia and their caregivers participated together. Findings demonstrated benefits to both the individuals living with dementia and their family caregivers. Benefits for the participants living with dementia highlighted their positive feelings of enjoyment and self-esteem, while their caregivers 42  emphasized the benefits of meeting with other caregivers and their pleasure in seeing their family members engaged in meaningful activity.  2.5.2 Dance movement therapy. Arts-based interventions built around dance and movement have been incorporated widely in long-term care settings. Similar to music therapy programming, dance movement therapy with people living with dementia has been implemented with goals of addressing the challenging behaviours associated with dementia (Beard 2012; Duignan, Hedley, & Milverton, 2009; Guzmán, Freeston, Rochester, Hughes, & James, 2016). However, in their reviews of arts-based interventions both Beard (2012) and Zelig and colleagues (2014) note that dance movement therapy in dementia care has been implemented primarily for person-focused benefits and support for person-centred care approaches. Similarly, Guzmán-García, Hughes, James and Rochester (2013) reviewed the literature specific to dance programming in long-term care homes finding that challenging behaviours decreased, while social interaction and enjoyment on the part of both residents and care staff increased. Guzmán and colleagues (2016) engaged people living with mild-moderate dementia in a dance programme built around Latin Ballroom dancing. The programme was adapted to include residents with sensory and mobility, and those with no previous dance experience. Findings supported overall improvement in mood through decreased irritability and increased self-esteem, as well as a reduction in social isolation in residents described as withdrawn. Similarly, a dance programme developed with Canada’s National Ballet School and Baycrest Health Sciences highlighted positive psychosocial benefits in terms of enjoyment and engagement (Lapum & Bar, 2016). Underlying the design of this dance programme is an understanding that movement and music are associated with memory and often associated with joyful past experiences. Thus, 43  the creative expression of dance movement draws on past memories supporting enduring selfhood in dementia.  Within its psychosocial benefits, dance has unique opportunities for socializing and building relationships. Coaten and Newman-Bluestein (2013) describe dance therapy as an inter-subjective process where relationships between dancers are key. The embodied and relational nature of dance movement therapy supports people living with advanced dementia to continue to engage in communication and social connections despite their cognitive and communicative deficits. Recently, Kontos and Grigorovich (2018) theorized regarding the potential that dance movement therapy holds as a model for relational citizenship, through supporting embodied creative expression and inter-corporeal engagement. 2.5.3 Intergenerational programming. Persons with advanced dementia have limited ability to initiate activities, communication, and social interactions (Chappell, et al., 2014). Subsequently, arts-based approaches in long-term care are typically led and facilitated by the care staff or other trained professionals. For example, in studies related to dance programmes, persons with dementia typically engage and socialize with dance movement psychotherapists or nursing and care staff (Coaten & Newman-Bluestein, 2013; Duignan, et al., 2009). However, in the past decade there has been growing interest in intergenerational programming where children partner and engage with older adults, including those with dementia. The intergenerational literature includes studies with children partnering with older adults across age groups, and in a range of settings including community, assisted living, and long-term care (Galbraith, et al., 2015). However, there has been relatively limited examination of intergenerational programming involving people living with dementia, especially those living with more advanced disease symptoms (Galbraith et al., 2015).  44  Participation in intergenerational programmes has been examined both in terms of the benefits for the children, and the older adult participants (Galbraith, et al., 2015). Goals for the children participants typically are focused on developing positive understandings of ageing and older adults to mitigate perceptions of stigma (Babcock, MaloneBeach, & Woodworth-Hou, 2016; Di Bona, Kennday, & Mountain, 2019). For older adult participants living with dementia, participation in intergenerational programmes has been seen to promote positive mood, and social engagement (Galbraith, et al., 2015). Many intergenerational programmes are built around promoting the benefits for both groups of participants (Cook & Bailey, 2013; Jarrott & Bruno, 2007; Whitehouse, 2013).  While there have been limited studies involving persons with advanced dementia,  intergenerational programmes do demonstrate significant potential for engagement in meaningful activities and interactions (George, 2011; Jarrott & Bruno, 2003; McNair & Moore, 2010; Xaverius & Mathews, 2004). Xaverius and Mathews (2004) observed increased engagement and expressiveness in residents living with advanced dementia living in a special care unit through engaging in structured discussions, crafts, and recreational activities with children in grade two. Jarrott and Bruno (2003) also observed higher levels of positive affect and behavioural engagement in people living with dementia who participated in activities with children attending a shared site daycare, compared to activities without children involved. Further, George (2011) reported findings of increased pleasure and fun, along with feelings of acceptance and self-worth among the people living with mild to moderate dementia in participating in an intergenerational programme. An intergenerational programme partnering residents living with moderate to advanced dementia in long-term care with two different groups of children (i.e. pre-school and grade eight), successfully demonstrated significant benefits for the residents (McNair & Moore, 45  2016). Residents demonstrated increased active participation, conversation, and memory, as well as positive affect and socialization in structured programmes when participating with the children. The findings pointed to benefits for the children participants as well (McNair & Moore, 2016). 2.6 Summary Demographic projections frame the next 20-30 years as a watershed in terms of the societal impacts of ageing and dementia. As outlined in this review of the literature, when viewed through a biomedical lens, people living with dementia are described in terms of burden, suffering, loss, and fear (Chaufan, Hollister, Nazareno, & Fox, 2012). Dominant perceptions of persons with dementia in terms of cognitive losses, functional declines, and difference engender assumptions that everyday interactions are no longer meaningful to them (Beard, 2004). In contrast, a psychosocial approach supports an understanding of dementia and persons living with dementia in terms of persistent personhood, and enduring abilities (Caddell & Clare, 2010; Chappell, et al., 2014).  A person-centred care approach has significant implications for promoting well-being and quality of life for people living with dementia, through supporting continued engagement in meaningful activities and social interactions (Kitwood, 1997; Sabat, 2001). In recent decades there has been increased recognition of the role of arts-based interventions in successfully engaging these individuals in meaningful ways (Beard, 2012; Zelig, et al., 2014). However, there have been few studies focused specifically on the unique experiences of people living with the most advanced symptoms of dementia in long-term care homes. Additionally, there have been few studies that privilege the subjective experiences of these individuals. My dissertation 46  research addresses these gaps, exploring the experiences of people living with advanced dementia as they engaged in meaningful activities and social interactions with the goal of gaining a rich and nuanced understanding of their experiences of dementia. The following chapter outlines the conceptual foundation underpinning my study.      47  Chapter Three: Conceptual Framework 3.1 Introduction Chapter three outlines the conceptual framework that underpins my dissertation research. The following discussion lays out the important theories, ideas, assumptions, and beliefs that support and inform my research questions and research design. I approached this study conceptualizing people living with dementia holistically within the context of their experiences, relationships, and broader social structures. It follows that my research draws on concepts of personhood, meaning, dialogism, and embodiment in understanding how people living with advanced dementia participate and engage in meaningful activities and interactions.  In laying out my conceptual framework I acknowledge the ways that beliefs and values foundational to my discipline and practice in nursing have shaped my thinking, particularly with respect to my conceptualizations of personhood and embodiment. As a nurse I am positioned within a discipline where the person and the body are core disciplinary concepts. The patient’s body serves as the site of the nurse’s daily work, and the nurse’s body serves as a tool for that work (Draper, 2014; Sandelowski, 2002). While the immediacy and acuity of illness frequently directs nurses towards the corporeal or object body, it is through knowledge of the lived experience, through the subject body that nurses come to know the patient as person (Sakalys, 2006). Increasingly in dementia-care and scholarship, the object body has been a source of understanding for the subject body, where using an embodied lens communicates the experiences of people living with dementia through their bodily gestures, movements and expressions (Edvardsson, et al., 2008; McCormack, et al., 2012).  48  Nursing’s theoretical and philosophical foundations also align well with a person-centred approach to dementia-care. The concept of holism is central in nursing, having emerged in opposition to biomedical understandings of the person that recognize only one aspect of their being, typically their diagnosis or symptoms. In contrast, nursing’s holistic understanding of the person views each patient as a unique and complex individual (Thorne, 2001). Similarly, within a person-centred approach the person living with dementia is understood to exist holistically within a historical, relational, and social context (Innes, 2009).  The research questions and conceptual framework that underpin my dissertation research have been shaped by my nursing practice, and my prior research and scholarship related to dementia. My conceptual framework supports a broad understanding of people living with advanced dementia which recognizes their persistent personhood and their enduring potential to engage in meaningful relationships. The assumptions that underpin this study are framed within a phenomenological philosophy, where lenses of relationality and embodiment offer insight into the lived experiences of people living with advanced dementia. 3.2 Taking a Broad View of the Person with Dementia  As discussed in the literature review in chapter two, a primarily biomedical perspective supports a narrow reductionist understanding where people living with advanced dementia are viewed primarily in relation to loss and difference (Naue & Kroll, 2008) with little consideration of their greater humanity (Chaufan, et al., 2012). In contrast, a psychosocial perspective supports a broader understanding of people living with advanced dementia within the context of their experiences and relationships, both past and current (Beard, 2004; Innes, 2009). As such, the 49  ways in which dementia is understood and people living with dementia are viewed, significantly impacts their opportunities for meaningful engagement and subsequently, their quality of life.  Underlying these differing views are ontological questions regarding what it is to be a person with dementia. This question is especially powerful and poignant when addressing people living with advanced dementia who present with substantive changes to their cognition, communication, personality, and behaviours such that they appear different and at the extreme, unrecognizable as compared to their pre-dementia selves (Hughes, Louw, & Sabat, 2006). When personal identity is defined in terms of cognition and the ability to demonstrate psychological continuity, people living with advanced dementia are severely compromised and disadvantaged. Further, when personal identity is dependent on memory, and memory is seen as exclusively neurological, people living with advanced dementia run the risk of losing their personhood, of being viewed as a mindless body and no longer as a person (Hughes, 2014a). In opposition to this reductionist perspective, British philosopher and psychiatrist Julian Hughes called for taking a much broader view to understanding personhood in advanced dementia (2014a). Thus, it is a broad view of people living with dementia that informs the conceptual framework and underlies the assumptions underpinning my dissertation research.  Kitwood (1997) called for continued recognition of the personhood of people living with dementia, in an effort to avoid the malignant social psychology he associated with viewing these individuals as lesser members of humanity. A broad view of people living with dementia understands the persistence of personhood throughout the trajectory of losses that accompanies the progression of dementia. A broad view of people living with dementia understands the persistence of the person, where despite decline and dysfunction their narrative is understood through their being situated and embedded in historical, relational, and social contexts (Hughes, 50  2014a).  This view also understands their continued potential to experience meaningful engagement in activities and relationships where, as cognition and language fail, their ability to engage and interact can be understood through embodiment (Hughes, 2014a).  3.3 A Phenomenological Perspective  The philosophy of phenomenology arose in Germany in the early 20th century through a desire to study and understand phenomena; German philosophers Edmund Husserl and Martin Heidegger are widely recognized for their foundational work in the development of phenomenology as both a philosophical and methodological approach. While Husserl assumed an epistemological position seeking to understand the pre-reflective, natural experience of the phenomenon, Heidegger sought to answer ontological questions related to understanding the meaning of being a person in the world (Dowling, 2007; Laverty, 2003).  Central to Heideggerian philosophy is a view of the person as being-in-the-world of everyday.  From this ontological perspective the world is seen as made of meaningful relationships and practices, and meaning is constructed by and with the world as it is constructed through our history and culture (Laverty, 2003). Persons are understood to be inherently interpretive, and encounters are interpreted through a hermeneutic circle moving between the parts and the whole – the pre-understandings and the experience (Laverty, 2003). Hughes (2001) drew on the work of early phenomenological philosophers in theorizing the person as being-in-the-world in an embodied way, where we establish meaning in the world through our meaningful relationships and the body is conceptualized as an expressive space where understanding and meaning are experienced. 51  My conceptual framework draws on phenomenological concepts of the person, meaning, and embodiment to provide a lens for understanding the lived experiences of people living with advanced dementia. Through a phenomenological lens, their experiences of being-in-the-world can be understood as significant or meaningful within their situated context. Further, in advanced dementia, embodiment provides a lens for understanding meaning-making where movements, gestures, and expressions are significant and meaningful. Thus, conceptualizing the person, meaning, relationality and embodiment offers potential for understanding the experience of meaningful interactions and relationships in advanced dementia. 3.3.1 The person-in-the-world. Phenomenology seeks to understand the human experience as it is lived in the world. In contrast to the Cartesian mind-body dualism, experience of phenomena is understood as co-constituted between the mind and the world (Laverty, 2003). Conceptualizing the mind in this way sets the stage for broadening understandings of people living with dementia where meaning-making is understood as taking place through social and embodied engagement with the lived world.  The Heideggerian phenomenological view of the person is concerned with understanding dasein or everyday practices and activities, where dasein describes the lived experience of being-in-the-world (Leonard, 1989). Within this perspective, understanding the relationship of the person to the world is central to understanding the person. The world is the meaningful relationships, activities, and language that the person exists in, within cultural, historical, and linguistic contexts (Leonard, 1989). Cartesianism views the self as a possession, an autonomous, disembodied person making rationale choices based on cognitively held understandings; in contrast, from a phenomenological view the self is understood as co-constituted with the world (Leonard, 1989). Accordingly, we become persons through the taking up of meanings, language, 52  cultural and family practices. From this perspective the person is thrown into the world where choices are determined by our situatedness. With each person constituting their world in a personal way, our common cultural and linguistic meanings create aspects of the world in common with others (Leonard, 1989).   3.3.2 Meaning-making. Within a phenomenological philosophy, the person is viewed as a being for whom things have significance and value. Being-in-the-world involves understanding that things matter; for example, our activities demonstrate seeking goals and caring about things. Thus, to understand a person’s behaviour, you must view them in context, where what is significant or meaningful is visible (Leonard 1989). Meaning emerges from our engagement with the world where we are at the same time being constructed by the world and constructing the world through our cultural and historical experiences (Laverty, 2003). Thus, understanding meanings is iterative and involves the process of interpretation.   Canadian philosopher Charles Taylor (1980) theorized meaning in terms of language where words have meaning through expressing reflective awareness. He theorized that language was not confined to talking about things, but included expressing them, and proposed the role of language existing in a public space where meaning is shared. Hughes and colleagues (2006) observed that for people living with dementia there can be a breakdown in the shared public space, which then challenges meaning-making.  Thus, a conceptual framework for understanding meaning in a shared world has important potential for people living with advanced dementia in long-term care homes. As dementia progresses and communication is challenged, people living with dementia react differently to the everyday; however, when they are understood as being fully persons within a shared humanity, there remains the potential for meaning-making in a shared world (Hughes, 2014a).  53  Meaning-making is an important concept for understanding the lived experience of people living with advanced dementia in long-term care. For carers, the challenge is to create shared community and communication despite the changing understanding and perspectives of these individuals; this speaks to the importance of ensuring that there are opportunities for meaningful engagement in dementia-care. Meaningful activity for people living with dementia in care  has typically been understood by staff carers in terms of its impact on resident behaviours and emotional responses, however it is less understood in terms of the meaning of the activities and interactions for the individuals participating (Beard, 2004; Milne, 2011; Phinney et al., 2007).  3.4 The Subjective Perspective The phenomenological person is viewed as self-interpreting where we are engaged in and constituted by our interpretive understanding of the world. This interpretive process moves between the parts and the whole of the experience in seeking understanding through the process of a hermeneutic circle (Laverty, 2003). In rejecting a subject-object binary, being-in-the-world makes sense against a background of significance which influences interpretation of future encounters (Leonard, 1989). The self is both subjective and in-the-world. Subjectivity is not solely inward, it is also expressed through outward gestures and behaviours which are meaningful in social community; the inner reality is manifest outwardly and subjectivity includes the shared intersubjectivity of social space (Burke, 2014). Thus, we share our subjective experience with others in our shared world.   Within current dementia scholarship there has been growing interest in understanding the subjective experience of people living with dementia. The challenge of seeking the subjective 54  perspective, of understanding what it means to have dementia, lies in taking up the point of view of the person living with dementia where our ability to take up another’s point of view lies in our similarities and our shared experiences. The uniquely personal meanings of the subjective experience become more difficult to apprehend as dementia progresses and self-awareness falters. However, as outlined in the following sections, an understanding of the person as embodied and constituted in relationships with others provides an avenue for understanding this experience and supporting personhood despite advanced dementia (Hughes, 2001).  3.4.1 The embodied person. Within a biomedical grounding, when people experience dementia, they are seen to lose their personal identity and personhood, becoming understood from within a constellation of losses as their dementia advances. In effect, using a biomedical lens, as cognitive and communicative facilities falter and fail, the person is seen to disappear leaving only the body. In contrast, a phenomenological conceptualization views the person as embodied, understanding that the body is engaged in the world intentionally and expressively (Leonard, 1989). This understanding of the person supports meaningful social interactions with others where those interactions are understood through bodily expressions of thoughts, feelings and intentions (Hughes, 2014b).  As discussed in the preceding chapter literature review, there has been growing interest in applying a lens of embodiment in dementia scholarship to explore bodily expressions of creativity and communication. Here, embodiment is more specifically positioned as a lens for conceptualizing the person living with dementia and recognizing their personhood – looking beyond their losses. Within current theorizing, embodiment is understood as a process reflecting the experience of living through the body (Coaten & Newman-Bluestein, 2013; Kontos & Martin, 2013; Phinney & Chesla, 2003). Employing an embodied approach recognizes the 55  persistence of personhood with dementia despite diminished cognition (Downs, 2013a; Kontos & Martin, 2013). Indeed, despite the cognitive losses that challenge memory, verbal communication and social relationships, people living with dementia continue to interact with others in ways that have meaning, value, and significance. When dementia is advanced, meaningful engagement can be seen to be expressed in bodily ways through gestures, movements, and expressions where the body becomes a vehicle for communicating. In this way the lived experience of dementia is understood through the lived body (Phinney, 2002). Thus, embodiment has much to offer current understandings of dementia and directions for dementia-care.  3.4.2 The dialogical person. Conceptualizing intersubjectivity and relational identity offers another lens through which to view personhood in dementia (Burke, 2014). Opportunities for meaningful social engagement are critical for ensuring quality of life for people living with advanced dementia. It is through social relationships and interactions that we share common meaning, create community, and ensure that they remain understood as full members of our common humanity.  The importance of the social world has been theorized in the work of Russian philosopher and literary critic Mikhail Bakhtin. Bakhtin explored dialogism related to the distribution and interactions of voices (Cresswell & Baerveldt, 2011).  Drawing on Bahktin’s discussion of the polyphonic novel, where heroes are written as independent voices, the self is seen as a narrative construction emerging from inter-subjective dialogue (Cresswell & Baerveldt, 2011). Thus, language is seen as central to meaning-making and lived experience, and dialogue is viewed as a social activity. From a Bahktinian approach, the person is dialogically in-the-world and engaged 56  relationally through words or utterances both coming from and directed to others (Salgado & Clegg, 2011).   The dialogical self supports a broad view where people, even those with advanced dementia might be understood to maintain personhood across the continuum of changes they experience. Epistemological questions aimed at self-knowledge and establishing self-representation support the Lockean argument which understands the person exclusively in terms of consciousness or psychological states and effectively de-personalizes individuals with advanced dementia (Hughes, 2001). In contrast, Salgado and Clegg (2011) offer a dialogical view of the person as maintaining personal agency through thought, action and experience within relationality. The person is understood through their dynamic relationships with others that are constituted through communication. Within these relationships, meaning is negotiated through communication that is constituted through personal and social history, and shared social norms (Salgado & Clegg, 2011). Thus, the dialogical self is viewed as embedded within a social, historical, and cultural context, in concrete relationships between self and others.  The centrality of relationships is also foundational to Kitwood’s (1997) conceptualization of a person-centred approach to caring for people living with dementia. In articulating the primacy of relationships in the human experience, Kitwood drew on the work of German philosopher Martin Buber. Buber theorized dialogical living where meaning is found in the encounter between I and Thou, and the use of I and Thou denotes a subject-subject dialogue as opposed to a subject-object dialogue (Allen & Coleman, 2006). Through Buber’s theorizing dialogism, Kitwood positioned the I-Thou relationship as the foundation for understanding and recognizing the personhood of people living with dementia, ensuring the human being is viewed as a person not an object.  57  Theorizing the person living with dementia relationally is central to my dissertation research. As outlined throughout this chapter and particularly in this discussion of dialogism, personal identity and personhood is understood to be constituted through mutual recognition in relationships with other human beings. For the person living with advanced dementia, loss of language and memory may result in a breakdown or fragmentation of their relational perceptions, however, the gaps in this knowledge are preserved through those sharing the relationship (Oppenheimer, 2006). Thus, close family and friends can hold the identities of these persons through perceptual and bodily memories and understandings constituted through dynamic, dialogical relationships. For carers without the same historical perspective, where the care-relationship is constituted in the present, an understanding of the dialogical self serves to support a person-centred approach to care. As Kitwood (1997) observed, despite advanced dementia an I-Thou form of dialogism remains possible.   3.5 A Broad View: Situated, Embodied, and Dialogical Hughes (2001) drew on the phenomenological tradition in theorizing the person living with dementia as a situated-embodied-agent. He viewed the person as situated and embedded within a familial, cultural and historical context where psychological phenomena are understood contextually as opposed to a narrow understanding of the mind as solely internal. Within this perspective the person is seen to be situated in-the-world in both mental and bodily ways, through activities that connote agency and meaning-making through expressing desires, drives, emotions, needs and attachments (Hughes et al., 2006). Hughes (2014a) extended his initial conceptualizing to recognize being-in-the-world bodily as central to his situated-embodied-agent understanding of the person living with advanced dementia.  Thus, personal identity is manifest 58  in both the body and the subject, held and constituted through relational dialogue where meaning-making is manifest through relational engagement with others. The broad view of people living with advanced dementia conceptualized in this chapter supports an understanding that even those individuals with the most advanced disease remain understood as persons - as full human beings. Using the example of an individual requiring total physical care, Hughes (2014a) pointed to their persistent ability to continue to interact with the world through bodily work: through awareness; through engagement and responses in verbal and non-verbal communication, and through acquired habits. He observed that the characteristics of habits created over a lifetime survive. Thus, these habits are sedimented, such that gestures, behaviours and responses, ways of doing and talking are signposts of personal identity and continuing manifestations of agency. Hughes (2001) theorized agency in advanced dementia, understanding that individuals continue to be situated in-the-world where others can interpret their being-in-the-world humanly, in bodily and dialogical ways. 3.6 Summary   In chapter three I have outlined the concepts and perspectives that underpin my dissertation research.  My conceptual framework is oriented within a phenomenological philosophy supporting an ontological understanding of the person living with dementia as being situated, embodied, and dialogical. This conceptualization affords me a broad perspective to view and understand the lived experiences of the participants living with advanced dementia in this study. This conceptual framework also supports understanding their persistent personhood within a progression of losses and recognizes their continued potential for meaning-making 59  through relationships, thus laying the foundation for my research questions and the methodology outlined in chapter four following.     60  Chapter Four: Methodological Framework What can be learned from examining relational engagement in structured and unstructured activities that might inform our understanding of how to best support meaningful social interaction among long term care residents with advanced dementia? i. How do older adults with advanced dementia who are living in a long-term care setting, experience and express meaningful social and emotional engagement? ii. How do family and staff members understand and describe meaningful social and emotional engagement for older adults with advanced dementia living in a long-term care setting? 4.1 Introduction My goal in conducting this study was to explore the experiences of older adults living with advanced dementia in a long-term care home as they engaged in meaningful activities and social interactions. As described in chapter one, I understood engagement to be meaningful when the individuals were motivated to participate in activities and relationships that had personal importance or significance (Phinney, et al., 2007). My aim is that the findings from this study will contribute a rich and nuanced understanding of the experience of advanced dementia, such that nurses and other caregivers will have increased sensitivity and awareness regarding the enduring potential for people living with advanced dementia to experience meaningful engagement. I hope that this understanding will support dementia-care policies and programming that are better tailored to ensure quality of life for residents living in long-term care. 61  Chapter four outlines the methodology and describes the methods employed in addressing the research questions central to my dissertation research. My research questions are positioned to begin this chapter, recognizing the strong links between these questions and all components of my research design and process; thus, these questions served as signposts to ensure that my research plan aligned well with my goals of study (Maxwell, 2013).  Where the conceptual framework outlined in chapter three addresses the ontological questions foundational to my understanding of the research problem and the construction of my research questions, the methodological framework discussed in chapter four, lays out the strategy that I employed in addressing these questions.  Chapter four begins with acknowledging the epistemological grounding that underpins this study. The research methodology and design are outlined next, providing the plan of inquiry guiding the study.  The setting and the sample are described in detail, discussing participant inclusion criteria and the recruitment process. Next, the data gathering methods employed are detailed along with the process of data management and analysis.  This chapter concludes with addressing issues of rigour, reflexivity, and ethical considerations.  4.2 Epistemological Grounding My research questions are qualitative in nature, supporting an exploration of the meaning-making in experience within a social context (Maxwell, 2007). My research aim was to understand issues and experiences related to living with dementia through closely examining the ways in which people living with advanced dementia engage in meaningful activities and relationships.  62  It follows that the methodology for this research is underpinned by a constructivist epistemology which supports my understanding of truth or knowledge to exist through our engagement with the world (Crotty, 1998). This aligns with my ontologic understanding of the person as being-in-the-world, a world where meaning is constituted through and by our situatedness and embeddedness with the world. Central to this constructivist view is the understanding that meaning is constructed, co-constructed, and re-constructed in the space between the inquirer and the inquired into (Lincoln, Lynham, & Guba, 2011). This view was central to the methods employed, framing my assumptions with respect to the interactional nature of the researcher and participant roles and relationships. In keeping with this standpoint, my analysis was guided by assuming an interpretive approach in seeking to understand meaning in experience. Inherent in constructivism is the understanding that the researcher is not detached from the world they are seeking to understand (Weinberg, 2014). This underscored the importance of engaging in on-going reflexivity to locate my own cultural and historic situatedness in the world and the experiences that I was researching. Grounded by a constructivist epistemology in contrast to a more positivist biomedical approach, my knowledge claims revolve around credibility, trustworthiness, and quality of outcomes rather than objective truths, validity and generalisability (Crotty, 1998).  4.3 Methodology: Focused Ethnography I chose a focused ethnographic approach to guide my dissertation research, recognizing its potential for addressing my research questions exploring the experience of meaningful engagement in advanced dementia. Recently, ethnographic methods have been adapted to meet the purposes of qualitative researchers from increasingly diverse disciplinary backgrounds, and 63  focused ethnography (Knoblauch, 2005) has been identified as a good fit for applied qualitative research inquiries within healthcare contexts (Bikker, et al., 2017; Cruz & Higginbottom, 2013; Wall, 2015).   Focused ethnography differs from traditional ethnography in several ways. With focused ethnography the field time is decreased from years to months or weeks and spending prolonged sessions of several hours with individual participants produces intense research encounters generating understanding and empathy (Pink & Morgan, 2013). While participant observation remains as a central data gathering method in focused ethnography, there is an emphasis on the role of technology and the eliciting of audio and visual data (Knoblauch, 2005). The richness of visual data becomes apparent in the analytic process where there is opportunity for engagement and reengagement with highly contextual data (Pink & Morgan, 2013). This study was undertaken in a long-term care home where I gathered data exploring the experiences of residents living with advanced dementia over several months. Participants included five residents and twenty family and staff members. Focused ethnography allowed me to use methods that created an intense focus on a small sample of individual participants over a relatively short field time (Wall, 2015).  I used a variety of methods, including gathering visual data through naturalistic and videoed participant observation that allowed me to create contextual and embodied understandings of the experiences of residents living with advanced dementia (Knoblauch, 2005; Pink & Morgan, 2013). This was particularly important as the resident participants all had complex cognitive and communication deficits which challenged me to consider both verbal and non-verbal understandings. I also gathered interview data from the family and staff members to provide another layer of context and perspective related to the resident participants’ experiences. 64  While ethnographic researchers are traditionally neutral reflective observers outside of the cultural group, focused ethnographers typically have insider status or a strong background knowledge of the culture group (Wall, 2015). Thus, while my background working with people living with advanced dementia in long-term care homes required on-going reflexivity, it was not a methodological obstacle. Finally, where traditional ethnographers enter the field without formalized, specific research questions in an effort to avoid bringing prior conceptions to their study, I drew on my nursing knowledge and prior clinical and research experiences in articulating specific questions to guide my study (Knoblauch, 2005; Wall, 2015).   4.4 Study Setting 4.4.1 Physical environment. My dissertation study was set in a 118-bed long-term residential care home where all of the residents had complex cognitive and physiological care needs. This government owned and operated long-term care home was situated in a major city in the Fraser Valley of British Columbia, Canada. It was built in the mid 20th century and physically projected a now out-dated and institutional image. Residents live in shared four-bed or semi-private rooms with shared bathroom facilities. It is a ground floor building with long hallways connected to central nursing stations before extending into common dining/recreation rooms. Security is highlighted by windows that do not open, and locked and alarmed entrances. The physical environment is very limited in terms of space. Hallways and storage areas are crowded and there is only one stand-alone meeting room.  65  4.4.2 Philosophy of care. While the physical environment appeared antiquated with respect to current thinking regarding long-term care homes (e.g. as compared to the Hogeweyk1 or current dementia village models), the administration and staff were committed to implementing a person-centred care approach. A statement outlining their philosophy of care was displayed at the entrance to the care home and described a heart-centred and skilled approach to care where all staff commit to creating a caring environment focused on meeting the needs of both residents and their families. Despite the institutional nature of the physical environment, I observed there to be a progressive culture that clearly valued initiatives and programming designed to support well-being and quality of life for the residents. To that end, there were a variety of opportunities for residents to engage in activities and relationships. 4.4.3 Staffing. The staffing complement included Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and Resident Care Aides (RCAs) who were primarily responsible for meeting resident needs related to their complex clinical needs and functional deficits associated with activities of daily living. There were two Resident Care Coordinators (RCCs) who managed new admissions, liaised with families, supervised all aspects of resident care, and provided a range of administrative roles. The RCCs were both RNs; they played integral roles in the day to day functioning of the facility, and were highly visible to staff, residents, and families. The daily nursing care of the residents was managed by teams of LPNs and RCAs, with each team overseen by an RN. The residents’ rehabilitation and recreation needs were largely met through programming led by a team of allied health professionals. The rehabilitation programming was  1 The Hogeweyk dementia village is located in the Netherlands and has generated significant positive interest as an innovative model for dementia-care. The physical environment includes small “homes” set within familiar community elements such as gardens and a specially designed grocery store. The goal is to provide a care environment that supports resident agency and individualized opportunities as the residents are free to move through the village as they wish (Vinick, 2019). 66  led by an occupational therapist (OT), physiotherapist (PT), and two rehabilitation aides. The recreation programming was led by a recreation therapist (RT) and two recreation aides. The care home also had a vibrant music programme led by a music therapist (MT), and an expressive arts therapist who lead a weekly intergenerational dance programme. 4.4.4 Activity programming. The rehabilitation and recreation programming usually took place in the dining room following and between meals. The rehabilitation team provided programming aimed at mobility issues through exercise classes and one on one interventions. The recreation team and music therapist provided a wide variety of programming across the stages of dementia including large and small group activities that incorporated cognitive, tactile, and emotional stimulation. The recreation team also supported a unique intergenerational dance programme, partnering children and residents in a weekly dance class. This programme was the subject of a previous research project where I was the principle investigator exploring the benefits of participating in the dance programme for both the residents and children2.  In this care home, highly structured and interactive activities (e.g. exercise classes, drumming group, bingo) were available throughout the day for all residents. These activities were scheduled around clinical care activities where residents engaged with nursing care staff in having their personal and nutritional care needs met. In addition, there were also periods of low or passive activity (e.g. unstructured times when residents were awake in bed or sitting in chairs in their rooms or common areas).  4.4.5 Setting Rationale. I chose this setting recognizing that it offered a diversity of contexts and opportunities for residents to engage in activities and relationships, and as such  2 See chapter one introduction. 67  could address my research questions. This setting was also chosen in consideration of the participant inclusion criteria outlined in section 4.5.1.1 below. The care home was a complex-care facility where the majority of residents had significant cognitive and functional deficits. Almost all of the residents had a diagnosis of dementia with many residents experiencing advanced stages of dementia. I also recognized that the size of the facility and the multicultural diversity of the surrounding local communities would allow successful recruitment of participants in terms of anticipated numbers, and the potential to reflect some diversity in terms of gender and ethnicity. I was cognizant that my prior involvement in this care home as a clinical nursing instructor had allowed me to develop well-established and positive relationships with staff and administrators, which in turn would positively support the feasibility of my study. My experience in this setting supervising university nursing students provided me with an intimate knowledge of the process and flow of clinical care, as well as the opportunity to establish strong relationships with all levels of staff and many of the residents over an extended period of time. As noted previously, I also had prior experience as a researcher in this setting. Thus, in selecting this setting I recognized that the support of administrators and staff would be beneficial in obtaining ethical approval from the health authority and university ethics boards, in securing the setting, and facilitating participant recruitment and data gathering. Additionally, my experiences as a nursing instructor and researcher provided me with a level of familiarity and an awareness of the experiences of residents living with advanced dementia in long-term care settings.  In selecting this setting, I understood that my previous experiences would require that I recognize, reflect, and interrogate the impact of both my roles and prior knowledge related to the setting. A discussion of my process of reflexivity follows in section 4.8, while in chapter five I 68  reflect in more detail on the impact and influence of my nursing identity as I shifted roles from nurse to researcher. 4.5 Participants: Recruitment Criteria and Processes I recruited three groups of participants to address my dissertation study research questions: resident participants (n=5); family member participants (n=5); staff member participants (n=15). The total sample size was 25 participants. Inclusion criteria and recruitment strategies for each participant group are outlined in the following sections. 4.5.1 Resident participants.  4.5.1.1 Resident participant inclusion criteria. I recruited five resident participants living in the long-term care home described in section 4.4 above. My inclusion criteria for these participants included: i. being 65 years or older; ii. participating weekly in at least one structured activity or programme with approximately half of the residents participating in the intergenerational dance programme; iii. having a medical diagnosis of dementia as recorded in the resident’s chart; iv. demonstrating advanced dementia through scoring between 6a – 7d on the Functional Assessment Staging (FAST) scale (Sclan & Reisberg, 1992) and scoring between 4 - 6 on the Cognitive Performance Scale (CPS) (Morris et al., 1994).  The FAST (Sclan & Reisberg, 1992) is a widely used, brief system for the assessment of advanced dementia where progressive functional decline is ranked along a continuum of seven stages and sub-stages that range from normal to very severe. Rankings between stages six and seven reflect significant functional deficits in terms of grooming, bathing, and toileting, mobility, and speech and communication. All five resident participants scored between 6d – 7a (see Table 69  4.1). Functional status was assessed by both nursing care staff and rehabilitation staff. I used their assessment data in determining the participant FAST scores. Additionally, the advanced dementia inclusion criterion required a score of between 4 - 6 reflecting moderate severe to very severe on the CPS (Morris, et al., 1994). Where the FAST (Sclan & Reisberg, 1992) score required careful and critical observations of each resident’s functional abilities, the CPS is a measure of cognitive performance generated by the Resident Assessment Instrument/Minimum Data Set (RAI/MDS) (Morris, et al., 1990). The RAI/MDS is a comprehensive assessment tool that was completed by the RNs in the study setting at regular intervals following admission. The five resident participants scored either 4 or 5 on the CPS (see Table 4.1) on their most recent CPS scores. These scores were obtained from the residents’ charts by the RCC and communicated to me. Resident engagement in meaningful activities and social interactions has been associated with well-being and quality of life (Milne, 2011; O’Rourke, et al., 2015). Outside of the routinized daily nursing care, the residents’ everyday activities and relationships were structured around recreation and rehabilitation programming, music therapy and intergenerational dance programming, and mealtimes, with the remainder of their time spent in passive or unstructured activities. Thus, in exploring the residents’ experiences of meaningful engagement, my recruitment criteria included participant involvement in both structured and unstructured activities and social interactions through their everyday living. All of the resident participants were involved in at least one structured programme within the range of programming options, with two of the residents participating in the intergenerational dance programme (see table 4.1 following).  70  4.5.1.2 Resident participant recruitment process. Residents were identified utilizing purposeful sampling. Purposive sampling is widely used in qualitative research for recognizing individuals with a depth of knowledge or experience of the phenomenon of interest (Palinkas, et al., 2015). In anticipation of participant recruitment, I met with one of the RCCs to outline and discuss the research purpose, design, and methods. We reviewed the inclusion criteria for resident participants and created an initial list of 15 potential participants. I prepared letters of introduction for the designated substitute decision-makers for each of the potential participants; the care home unit clerk either mailed the letters or simply gave the letters to the family members when they can to visit the potential participants. Four family members responded within two months of receiving the study information letter. I then sent out six more letters to families of potential participants and recruited my fifth participant four months after beginning the study. I halted recruitment of residents after five months in the field. At this point in the study, I was fully engaged in an iterative data gathering and analytic process where I was gaining an increasingly in-depth and rich exploration of the residents’ experiences and was beginning to formulate initial understandings. As successive participant observation sessions, go-along conversations, and interviews were being conducted, I continued to see, hear, and reflect on new aspects, or characteristics of each resident participants’ experiences of meaningful engagement. Thus, I elected to seek an in-depth understanding of the five recruited residents rather than a breadth of understanding across a larger sample of resident participants and halted resident recruitment. In total, I gathered 77 hours of resident data. The recruitment process involved meeting with each resident participant along with a family member having authority as a substitute decision-maker to provide informed consent for participation in the study. During this meeting, the study purpose, design, and methods were 71  discussed. I also discussed potential ethical concerns related to informed consent, confidentiality, and anonymity highlighting issues specific to data gathering and management related to video-recording the residents. Both the family member as designated substitute decision-maker and the residents themselves provided consent; family members signed the informed consent documents for each of the resident participants, and resident participants provided evidence of assent. The process of consent undertaken in this study is detailed in section 4.9 following (Dewing, 2007). Table 4.1 Resident Participant Characteristics Resident Age in Years Gender FAST Score CPS Score Participation in Structured Activities Ed 84 M 6d 4 ➢ Recreation programme ➢ Rehabilitation programme ➢ Music programme Alice 95 F 6d 4 ➢ Recreation programme ➢ Rehabilitation programme ➢ Music programme Mary 96 F 6d 4 ➢ Recreation programme ➢ Rehabilitation programme ➢ Music programme Edith 91 F 7a 4 ➢ Recreation programme ➢ Rehabilitation programme ➢ Music programme ➢ Intergenerational dance programme Anna 87 F 7a 5 ➢ Intergenerational dance programme   72  4.5.2 Family member participants.  4.5.2.1 Family member inclusion criteria. Family member participants (n=5) were recruited in conjunction with recruitment of the resident participants. Inclusion criteria for family member participants included family who: i. visited the resident participants on a regular basis (e.g. weekly or more frequently); and, ii. were highly engaged with the resident participants, for example, during activities of daily living such as mealtimes and recreation activities.  Each of the family member participants was the designated substitute decision-maker for one of the resident participants. The family member participant group included one nephew, two daughters, and two sons. All of the family members described having close relationships with the resident who was their family member. Thus, the family member participants all possessed significant knowledge and understanding of the resident participants, enabling them to provide meaningful data in addressing the study’s research questions. 4.5.2.2 Family member recruitment process. The family member participants all contacted me in response to receiving the initial letter of introduction, and all indicated their willingness to participate in the study at that time. Each of the family members also indicated during our initial conversation how thankful they were that a study was being conducted with goals of acknowledging and understanding the experiences of their family member. The recruitment process for the family member participants occurred during initial meetings to recruit resident participants as described above. During this meeting the family members provided informed consent for the residents to participate in the study; following this, each family member also signed an informed consent indicating their own willingness to also be study participants.   73  4.5.3 Staff member participants.  4.5.3.1 Staff member inclusion criteria. Fifteen staff member participants were recruited across a range of nursing and allied health professions (see table 4.2). Nursing and allied care staff members work closely with residents, often over very long periods of time and subsequently can develop close and knowledgeable relationships with the residents. Staff members typically know a lot about what the residents enjoy, what they dislike, and how they typically engage in daily relationships and activities. Staff are aware of resident abilities and limitations and can interpret non-verbal indicators for residents with significant communication deficits. Thus, I sought staff members as a rich source of information and insights related to how the residents experienced and expressed meaningful engagement.  Initially I sought staff member participants only from within the nursing care staff (i.e. RCAs, LPNs, and RNs), acknowledging the close and prolonged contact that nursing care staff have with long-term care residents. I was particularly interested in recruiting the RCAs who knew the residents’ day to day experiences through providing daily care over months, and at times, years. I sought to include nursing care staff who self-identified as having an in-depth knowledge related to at least one of the resident participants. However, during this recruitment process, I was approached by several members of the allied health team. Specifically, the recreation therapist, the music therapist, and members of the rehabilitation team all contacted me and indicated their strong interest in participating in the study. Not all members of the allied health team had in-depth knowledge specific to the five resident participants, however these participants provided a broader perspective with respect to the overall resident population living in the care home. Their insights were gained through participating in activities and relationships outside of the nursing care dyad which provided an additional lens of understanding. 74  Subsequently, I amended my study proposal to include both nursing care and allied health care staff members.   4.5.3.2 Staff member recruitment processes. Recruitment of staff member participants was initiated during an information meeting prior to the start of the study where I introduced the study purpose and methods. This meeting was held at the end of a nursing care staff meeting; the staff members in attendance were RCAs, LPNs, RNs, and one of the RCCs. Following this meeting, information posters were posted on staff communication boards and information letters were left with the unit clerk. Interested staff members contacted me for more information regarding participating in the study. Interestingly, while the RCAs were interested in the overall study, they were hesitant to participate. In an effort to ensure their participation, I directly approached RCAs I knew were working with the resident participants to discuss the study and their potential participation in more depth. From these informal discussions, five RCA participants were recruited with each RCA identifying that they had a depth of experience and understanding specific to at least one of the resident participants. I met individually with each staff member participant to review the study purpose and methods, answer any questions, and obtain informed consent. I was aware during these meetings that my unique position in being well-known in that setting would influence staff member recruitment and participation. My insider status in relation to staff recruitment, particularly RCA recruitment is explored in my discussion of reflexivity in section 4.8.1.     75  Table 4.2 Staff Member Participant Roles Staff Member Roles Number of Participants Resident Care Aide 5 Resident Care Coordinator 2 Occupational Therapist 1 Physiotherapist 1 Rehabilitation Assistant 2 Recreation Therapist 1 Recreation Assistant 1 Music Therapist 1 Expressive Arts Therapist 1  4.6 Data Gathering Methods I was immersed in the field, engaged in data gathering over a seven-month period. Data gathering involved several methods including naturalistic participant observations where I simply observed the residents; I also engaged in video-recorded participant observations. I gathered data during go-along conversations, through conducting interviews, and with the creation of field notes, memos, and a research journal. As a result, data were constructed in a variety of forms including audio-video recordings and text. The individual data gathering methods are described in the following sections with a more detailed discussion of ethical considerations related to visual data gathering and management following in section 4.9.  76  4.6.1 Participant observation. Participant observation is a central tenet of ethnographic inquiry and as such forms one of the main data gathering methods in this study. It allows the researcher to observe and reflect on behaviours as they unfold within a natural context (Thorne, 2016). Thus, participant observation offers significant potential for understanding the lived experience of dementia by opening a window on non-verbal communication, gestures, and bodily movements, allowing people living with advanced dementia to be understood in context. In keeping with a focused ethnography, my participant groups were relatively small and time spent in the field relatively limited (Knoblauch, 2005). Observations were conducted only with the five resident participants and occurred over a seven-month period of field study. Participant observations included both naturalistic and video-recorded observations of the resident participants where I paid particular attention to their experiences of meaningful engagement through their participation in social interactions and activities.  4.6.1.1 The observation process. In conducting naturalistic observations, I assumed as unobtrusive a position as possible; typically, I sat at the edge of an activity area or group and recorded hand-written field notes. During these sessions I observed the participants during both passive activity while seated in their chairs or lying in their beds with no apparent social or active engagement, as well as during active engagement where they were participating in activities and interactions. Prior to observation sessions I spoke to each of the resident participants in seeking to establish assent. I explained that I was there to understand how they spent their days. I did not attempt to observe the participants anonymously in a secretive manner. In fact, over time several of the participants began to recognize me and would smile and greet me as they assembled for an activity. I engaged directly with the participants prior to, and following their activities, however, during the observation sessions I remained on the periphery. In this way 77  I attempted to observe their typical day to day experiences while minimizing the impact of my presence. Despite initially being aware of my presence, as the participants became engaged in interactions and activities, they became less focused on me thus reducing the incidence of reactivity or behaviours inspired by my presence. I was methodical in my approach to participant observations. My observations began with the first resident participant recruited and continued in an additive fashion as successive participants were added to my sample. Each observation session was initiated by first conducting a broad environmental scan where I made note of both the physical environment (e.g. dining-room, hallway) and the social environment (e.g. presence of staff, family members, residents). This was followed by a focus on the resident participant beginning with a physical assessment (e.g. what they were wearing, how they were physically positioned), a social assessment (e.g. level of engagement with others), and an emotional assessment (e.g. indicators of affect and mood). Having created field notes reflecting these initial assessments I settled into the observation session to look and listen. During some sessions, one single resident participant was observed, while at other times up to three participants were included in the observation sessions. When more than one participant was engaged in the same activity, I systematically shifted my observation from resident to resident, making notes reflecting each individual participant before shifting to the next.  4.6.1.2 Observer-as-participant. Participant observation traverses a continuum along which the researcher can assume close or more distant roles with participants in the field (Watts, 2011). My insider status and knowledge of the setting and participants, as well as the need to ensure on-going assent meant that I could maintain only a limited distance between the researcher and the researched. Thus, at times I conducted observations as an observer-as-78  participant where I moved in from the periphery to engage directly with the participants during observation sessions that involved both recreational (e.g. playing Bingo) and rehabilitation programming (e.g. playing Bocce). By participating in the social groups that the residents were participating in, I got a feel for the subjective experiences of the participants, learning about their day to day interactions and activities through first-hand involvement. I was conscious of the need for on-going reflexivity regarding my roles as observer and participant; a detailed discussion of this process follows in section 4.8.1. 4.6.2 Go-along conversations. Traditional interviews are challenging for people living with advanced dementia, thus, go-along or open naturalistic conversations were conducted with resident participants (Carpiano, 2009; Hung, Phinney, Chaudhury, Rodney, Tabamo, & Bohl, 2017). The go-along nature of these conversations allowed for both engagement and conversation to unfold naturally as I took my cues from the participants. For example, go-along conversations occurred as I sat with residents in their rooms, participated with them during activities, or chatted over a cup of coffee. I took my cue from the participants such that going-along entailed engaging with the resident in any activity or manner that they seemed inclined to do. I conducted go-along conversations to reflect a range of engagement experiences, including during periods of high engagement (e.g. during a meal or recreation activity) and passivity (e.g. sitting quietly). Some go-along conversations lasted just a few minutes while others lasted up to half an hour; again, I took my cue from the participants in determining the length of engagement. The successful engagement of participants in a go-along conversations requires establishing a trusting relationship and ensuring a safe and supportive context (i.e. unrushed and in a familiar setting) (Hellström, Nolan, Nordenfelt, & Lundh., 2007; Personen, Remes, & Isola, 2011); this understanding guided my approach.  79  4.6.3 Video-recorded data.  I gathered video-recorded data during both participant observations and go-along conversations. Focused ethnographies are concerned with actions, interactions and social situations and thus utilize audiovisual data gathering methods (Knoblauch, 2005; Pink & Morgan, 2013). Increasingly within the literature, participant observation involving people living with advanced dementia is video recorded (see for example, Götell, et al., 2009; Hydén, 2013; Örluv & Nikku, 2007). Video-recording adds another dimension to participant observation where the camera becomes a tool to explore the participants’ experiences. In effect, this positions the researcher a step away from the gathered data and offers another layer to the observations during analysis. I chose not to ask one of the residents to participate in being video-recorded or having her photo taken. I had found Mary to frequently be suspicious of interactions and people and felt that I would be most successful in building rapport with her if I did not attempt to use visual methods in my data gathering with her. However, I did record 52 videos, gathering video data reflecting the experiences of the other four resident participants. Most video recordings during participant observations lasted two-three minutes, while recordings made during go-along conversations ranged from 5-10 minutes. I also video-recorded observation sessions where I was directly engaged with the resident participants during activities such as the music programming and during some of the go-along conversations. I ensured assent from the resident participant before all filming and took care to avoid capturing images of other individuals. I was selective in proposing video-recording only during interactions when the participants were relaxed and appeared to be highly engaged and enjoying our interaction. For example, I video-recorded one of the participants as she gave me a tour of her room. She appeared to be proud and pleased during the video-recording and when I played the video back for her to view. There were no 80  occasions where participants refused to have our interactions video-recorded. I used a small hand-held camera with a screen that allowed me to show the resident participants our images during filming and allowed me to play back recordings for participant viewing.  The creation of video data allowed me to record participant observations and go-along conversations in detail and in context, making it possible to examine the nuances of their activities and verbal and non-verbal interactions. Further, analysis of the video data analysis allowed for a process of viewing and reviewing the data revealing what was not revealed in the moment (Örluv & Nikku, 2007).Video data has the potential for capturing a rich and contextualized view of the participants’ experiences while filming them in their natural environments (Harrison, 2002; Hydén, 2013). Thus, video data provided an additional and important lens for exploring their experiences of meaningful engagement.  4.6.4 Field notes. In keeping with a constructivist grounding, I understand ethnographic data as constructed rather than merely gathered (Condell, 2008). Thus, as a field researcher I was actively engaged in data generation. Writing field notes provided an opportunity for co-constructing data and articulating my observations and impressions related to the data gathering experiences (Montgomery & Bailey, 2007). Field notes were written to capture participant observations and to record the experience of go-along conversations. I also created notes to represent, in text form, what I was viewing as I watched the video-recordings.  Participant observations and go-along conversations were captured in detailed hand-written notes initiated during and completed following observation sessions. In an effort to limit the effect of memory and to maintain richness, I attempted to complete field notes on the day of each observation session. Highlights, ideas, and other thoughts generated during field sessions 81  were fleshed out at this time. Recognizing the advanced stages of dementia of the resident participants and their associated cognitive and communication challenges, my observations and field notes assumed a lens of embodiment often focusing on body movements, vocalization, facial expressions, and gaze tracking (see for example, Hydén, 2013; Örulv & Nikku, 2007).  4.6.5 Analytic memos. Data gathering and analysis were concurrent in keeping with ethnographic inquiry, thus both field notes and memos were constructed throughout the study. In keeping with direction from Emerson, Fretz and Shaw (2011), field notes recorded a detailed description of participant observations, where memos were analytic and interpretive reflections on the observation experience and field notes creating insights, direction and guidance for the on-going fieldwork. I created memos as I engaged with all of the data forms (i.e. textual and visual data) as it was initially gathered, stored, and organized; through the creation of these memos I sought to identify both a sense of the whole and the particular, including the stand out exemplars for further analysis. Thus, throughout the data gathering process I created analytic memos to outline my preliminary ideas and explore my emerging lines of inquiry. These memos recorded the development of my ideas through an iterative analytic process that helped me to order the complexity within the data. During the final stages of analysis these memos were integrated into the broad complement of data, in effect serving as both a source of data and analysis.  4.6.6 Staff and family member participant interviews. In total, 20 individual semi-structured interviews were conducted with staff (n=15) and family member (n=5) participants. The interviews were audio-recorded and ranged from 20 to 60 minutes in length. The same interview guide was used for both staff and family member participants however, each interview evolved uniquely reflecting the individual insights and experiences of the participants. Interview 82  questions were asked to explore the staff and family member participants’ understandings and perspectives regarding the resident participants’ past and present engagement in social relationships and activities, and to highlight aspects of engagement that the participants felt were meaningful for the residents.  For each resident participant an interview was conducted with their family member and at least one staff member who identified as working closely with them. These staff members were RCAs and rehabilitation assistants with extensive direct care experiences with the specific resident participant that they focused on during their interviews. The remaining staff member participant interviews provided a broader view exploring more general understandings of the experiences of residents living in the care home.  4.7 Data Analysis Processes 4.7.1 Analytic approach. An inductive, interpretive approach to analysis was undertaken, with dedicated periods of intense data analysis occurring throughout the entirety of the study to address the diversity and volume of data as it was compiled. For example, as participant observation sessions were conducted, I created field notes and then began analysis through a careful reading of notes and viewing of any related video data; this was followed by the construction of analytic memos.  Focused ethnography calls for an iterative, cyclic process where preliminary analysis and understandings generate insights that guide further data gathering, thus the process of analysis is coincident with the process of data gathering (Higginbottom, Pillay, & Boadu., 2013). At the conclusion of the study, analysis of the complete complement of data gathered generated a thematically organized analytic narrative – what Ellingson (2011) describe as a thematic narrative. 83  4.7.2 Data management. The volume and diversity of data required a systematic approach to data management. All participants were assigned an identification code to facilitate anonymity. Subsequently, in keeping with a person-centred approach, pseudonyms were created for each of the resident participants. As noted previously, field notes were written during participant observation sessions and completed or fleshed out at the end of the observation day. Video-recordings were created during participant observations and go-along conversations. Staff and family member participant interviews were transcribed verbatim following the interviews. Analytic memos were created as I gathered and reflected on data gathered through each of these methods. I also maintained a research journal and log throughout the fieldwork to capture and record the process and details related to participant recruitment and data gathering.  Throughout the study, I saved, sorted, and organized the text and video data into digital folders as it was created. The video data was also converted into text through viewing and reviewing the video, then creating a narrative text to reflect what I was observing. Similar to the creation of field notes reflecting on participant observation sessions in the field, this text was primarily descriptive. Then analytic memos were created reflecting on both the video data and video texts. Ultimately, text versions of all data gathered were saved as digital files and sorted into folders. Analytic memos were created as I read through the text data using digital highlighting and comments features. Finally, as analysis progressed, paper copies, stickies, and highlighters were used to help identify, track, compare, contrast, and consider my emerging understandings of the data. 4.7.3 Process of analyzing textual data. As noted above, analysis was coincident with the initiation of the data gathering process and continued throughout the study as more data was gathered and generated. Drawing on direction from Ellingson (2011), initial analysis began with 84  my entry into the field, my initial participant observations, interviews, field notes and memos. The first stage of my analysis began with a careful line by line reading of each text where I was immersed in the whole of each piece of text data. This stage involved sorting and organizing the data into units coded with descriptive labels and beginning to tease out themes in the form of patterns and commonalities.  Coding involved identifying words or phrases capturing something that stood out in the text as salient or evocative (Saldaña, 2016). For example, in reading through the participant observation texts there were many instances where I had made note of the residents waiting and watching; this then became a code. Thus, the codes reflected phrases I had written or phrases that came to mind as I immersed myself in reading the text data and creating memos. Patterns were reflected in the codes suggesting similarities, frequencies, and relationships. For example, almost all staff member interviewees used the terms relationship, rapport, and connection in sharing their understanding of meaningful engagement for the residents thus eliciting the code relational connections. Data analysis was an iterative, interpretive process involving constant comparison where my initial interpretations were revisited and challenged as additional data was gathered.  The first level of analysis was reflected in the form of emerging ideas, insights and questions generated through the data gathering process and captured in analytic memos and codes. Following this, a second level of analysis was initiated exploring relationships and patterns between the initial codes identified. At this stage I explored relationships between specific data sets (e.g. resident participants, family members, and staff members). For example, I moved in an iterative way between all the data associated with each individual resident participant considering participant observation, go-along conversation, video data, and family and staff member data comparing, confirming, and revising initial codes and ideas based on this 85  secondary analysis. Thus, data was analysed within each data set and then between all the data sets generating and clarifying insights and themes. Ultimately, a corpus or full complement of data was gathered and at this point the analytic process became more focused on the study outcomes. As suggested by Thorne (2016), I considered what the data was telling me and revisited my research questions and aims considering the relationship between the data and what I wanted to know. Within an ethnographic perspective the analyses of data and themes were eventually woven together with the goal of telling an analytically thematized story (Ellingson, 2011). This story reflected my understandings as drawn from the data gathering and analysis in addressing the questions central to this study.  Thus, my findings as outlined in the following chapters intend to construct a rich thematic narrative that both adds to and creates new understanding of how people living with advanced dementia in long-term care homes experience meaningful engagement.  4.7.4 Process of analyzing video data. Video analysis has increasingly emerged as a powerful tool in qualitative research. It provides unique access to the minute details of social interactions in the moment (Knoblauch & Schnettler, 2012). Further, the ability to engage and re-engage with the video data supports a highly contextual and interpretive analytic process with the opportunity to observe what was not revealed in the moment through subsequent viewings (Knoblauch & Schnettler, 2012; Pink & Morgan, 2013). This analytic process provides a unique opportunity to explore and analyse the subjective experiences of emotion and mood where nuances of participants’ behaviours and interactions that may have been lost in naturalistic participant observation are captured in film (Milne, 2011).   86  I initiated preliminary analysis of video data guided by the initial thoughts and insights I had during filming, then continued to engage and re-engage with the data through subsequent viewings of the videos. My goals were interpretive, to move beyond describing actions and interactions to understanding the underlying meanings (Knoblauch & Schnettler, 2012). Similar to the analytic process involving the text data, the video data was reviewed carefully resulting in the creation of descriptive video field notes and analytic memos. Through engaging with the video data and identifying and examining video text patterns, descriptive codes were created to reflect commonalities as well as outliers. This iterative process of viewing and reviewing the video data and video text continued as additional data was gathered. Preliminary insights and first level coding was challenged with re-immersion in the data generating new understandings, questions, and directions, which in turn lead to the creation of new codes and themes. The analytic process involved constant comparison identifying linkages both within and between all the data sets in recognizing patterns within the activities and interactions observed. Drawing on direction from Maggs-Rapport (2001), as the analytic process continued, the video data was considered and compared across all the data sources (i.e. both text and video) with all data sets contributing to the developing codes, themes, and the eventual construction of a narrative reflecting the phenomenon of study.  4.7.5 Study outcomes. The findings and discussion generated from my dissertation research are articulated in the following chapters and will be shared through peer reviewed manuscripts, and academic presentations. In addition to these traditional forms of academic knowledge translation, I am very aware that the video data gathered will be a powerful tool for sharing my research outcomes with clinicians and more broadly within the larger community. Thus, future knowledge translation activities will include utilizing the video data as still images 87  in academic posters, as film clips in presentations to lay and academic audiences, and potentially in the creation of documentary film. I believe utilizing video data from this study to support discussion and additional educational opportunities aimed at those providing care for persons with advanced dementia has significant potential to promote person-centred approaches and increase carer empathy, sensitivity, and awareness of the potential that exists regardless of severity of dementia. 4.8 Rigour  Qualitative researchers have been challenged to conceptualize and demonstrate criteria that evaluate the quality or rigour of their research, particularly in translating traditional positivist notions of validity and reliability (Cresswell & Miller, 2000; Seale, 1999).  Consequently, the qualitative literature houses multiple and varied conceptualizations of models aimed at establishing criteria for rigour commensurate with a qualitative approach (Altheide & Johnson, 2011; Tracy, 2010). The diversity of methodologies and methods make it difficult to articulate one set of criteria for all qualitative research (Higginbottom, et al., 2013; Whittemore, Chase, & Mandle, 2001). Over recent decades, these discussions regarding qualitative research have underscored a variety of concepts to reflect rigour including credibility, trustworthiness, adequacy, coherence, and adequacy (Whitmore, et al., 2001). In ensuring and evaluating the quality of my dissertation research I carefully considered the credibility of my study and findings. As a nurse-researcher exploring the experience of advanced dementia, I questioned whether the claims I made would be credible within this context; would others have confidence in my interpretation of meaning in the data (Thorne, 2016; Whitmore, et al., 2001)?  Ensuring the credibility of my study began with the study design, 88  ensuring that there was alignment between my research questions, epistemological underpinnings, and methods and methodology. I recognized that strategies for establishing credibility typically include prolonged engagement and persistent observation (Polit & Beck, 2012). Consequently, in keeping with a focused ethnography, I sought credibility through the intensity of my data gathering across a diversity of data sources and the use of video technology in the absence of the traditional years-long researcher engagement in the field.  Utilizing a variety of data sources was important in demonstrating representative credibility where my interpreted findings could be substantiated from multiple points of view, facilitated through a triangulation of sources (Thorne, 2016). Both data and method triangulation are seen as strategies to support qualitative rigour (Polit & Beck, 2012). Through triangulation, multiple data sources and methods of data gathering provide a range of perspectives for analysis (Hegelund, 2005; Maggs-Rapport, 2001). My study involved triangulating data from a diverse set of sources including residents, family members, and staff members, and utilized a variety of methods including participant observation, go-along conversations, interviews, and video-recording. I also engaged in on-going discussions with my dissertation supervisor and committee members to provide another lens to evaluate the logic of my design, analysis, and clarity of my argument.    I implemented strategies intended to promote and support quality and rigour in my research methods and outcomes through considering the dependability of my data, where dependability was seen to describe consistency or stability in the data (Long & Johnson, 2000). To that end I established and maintained systematic methods of data gathering (e.g. ensuring consistency in the way I carried out participation observation and interviews). Dependability of data was also enhanced by the triangulation of diverse data sets which facilitated illumination of 89  common observations across these data sets. For example, conceptualizations of temporality were expressed across all three participant sample groups where the experiences and identities of the participants with advanced dementia were linked to their perceived temporal shifts between the past and the present.  A record or audit of decisions related to data gathering was recorded in my research journal, log and memos. Maintaining an audit trail effectively reflects the researcher’s analytic logic making their reasoning and decision-making explicit in supporting the overall credibility of the research (Thorne, 2016). For example, my decision-making and process related to participant recruitment was detailed in journal entries outlining my discussions with the RCC related to identifying potential participants and contacting their designated substitute decision-makers.  The authenticity or trustworthiness of qualitative research is closely linked with credibility (Whitmore, et al., 2001). Attention to the authenticity of the interpretive findings and outcomes questions to what extent the researcher’s interpretations are trustworthy (Thorne, 2016). Thus, the measure of the interpretive authority of my research considers to what extent my interpretive findings are uniquely subjective or reflect broader shared understandings. Interrogating the interpretive authority of my claims required applying a reflexive lens to my insider identity in exploring the impact and influence this had on the construction and analysis of data; detailed reflections on my reflexive process are outlined in the following section 4.8.1.  I did not seek the objectivity and uncontested certainty of facts in conducting this study; instead, my goal was to add depth, richness, and nuance to current interpreted understandings of what it means to be a person living with advanced dementia. Ultimately, I understand my dissertation research will be judged by how persuasive my argument is; how meaningful the 90  answers to my research questions are; and how the knowledge arising from this study is taken up by the community of practitioners and scholars (Angen, 2000).  4.8.1 Reflexivity. Reflexivity acknowledges the central role and influence of the researcher on the research process and resultant knowledge construction (Long & Johnson, 2000; Polit & Beck, 2012; Tracy, 2010). While reflexive examination is required of all interpretive inquiry, applying a reflexive lens is particularly germane in ethnographic inquiry where the participant-observer roles of the researcher requires their immersion in the cultural group and field of study (Holloway & Wheeler, 2010). Although immersion in the field is reduced in focused ethnography, it remains that the researcher is an instrument in the researcher process necessitating a conscious self-reflection of the researcher’s role in shaping the research methods and findings (Higginbottom, et al., 2013).   Guided by focused ethnography, I was situated and embedded in both the research process and environment; subsequently, my unique insider positioning required a commitment to an on-going process of reflexivity throughout the study (Angen, 2000). As described earlier, I had prior experiences in the study setting as both a nursing instructor and researcher, prior involvement with the intergenerational dance programme, and had developed significant expertise in working with older adults with dementia through my clinical nursing experiences. These experiences provided me with knowledge and relationships formed outside of, and prior to initiating this study. Thus, I engaged in a careful and deliberate reflection of the ways in which my prior understandings and experiences might have influenced and impacted the research design, process, and outcomes.  91  An early benefit of my insider status lay in having the support of the setting managers with respect to securing the setting and facilitating the participant recruitment process. However, while my insider relationships and knowledge enabled overall participant recruitment, I believe it created some challenges in recruiting the RCAs. I engaged in purposive sampling to recruit RCAs with in-depth knowledge and experience of the resident participants. While the RCAs I approached regarding participating in the study readily acknowledged that they possessed the required knowledge and experience, they were hesitant to volunteer; they agreed to participate only after I provided additional assurance as to the nature of the interview experience. Additionally, while interviews with both family members and allied staff members flowed easily over approximately an hour, the RCA interviews were shorter and had less ease and flow of discussion. The RCA participants sought more explanation and interpretation of the intent behind my interview questions before answering.  Reflexivity reveals the power relations at play related to researcher identity and roles (Manias & Street, 2001). Within the hierarchy of healthcare professions there are similarities between nursing and the allied staff roles. In contrast, the RCAs are perceived to be positioned well down the hierarchical ladder. I entered the field having established friendly relationships across all staff member groups regardless of discipline, however I also recognized that the RCAs viewed me in my professional identity as an RN. Although I had never been employed in a supervisory capacity with these RCAs, they had seen me in action as a nursing instructor from the local university tasked with supervising and teaching nursing students. Subsequently, I believe the hesitancy of the RCAs to both volunteer and to share their insights during the interviews reflected a perceived power imbalance. In response, I attempted to address this imbalance by providing the RCAs with more information and more time as they considered 92  participating in the study, as well as more information and more time to help facilitate their confidence during the interviews. Issues of power were also apparent in ensuring resident participant assent. While informed consent was provided by the residents’ designated substitute decision-makers, I was committed to ensuring resident participant assent or willingness to participate in the study through go-along conversations, and naturalistic and video-recorded observations. A reflexive understanding of the power relations between myself as the researcher and the resident as participant raised an ethical dilemma regarding ensuring assent. This ethical dilemma is discussed in section 4.9 following. Reflexivity was also important in conducting data analysis. In constructing an analytic narrative to share the stories of the people I was studying, I recognized that I had worked and reworked the data in its interpretation. I also recognized that my identity and roles had impacted my relationships with both the setting and the participants and consequently, influenced the analytic narrative. Thus, my perceptions and understanding of the data were shaped and changed over time as my experiences and my developing relationships with the people in my study evolved.  Reflexivity was integral to the overall research process and I engaged in self-reflection both in the moment during data gathering, later during the completion of field notes and memos, and in discussions with my supervisor. In particular, the extent to which I was an insider created tension between my roles and identities as a researcher and a nurse. In the moment, during data gathering I frequently felt pulled between these two identities; self-reflection was critical in 93  understanding and negotiating this tension. In chapter five I unpack the tensions and issues related to my dual roles and identities as researcher and clinician in more detail and depth.  4.9 Ethical Considerations  4.9.1 Consent, assent, and dissent. People living with dementia have been largely excluded from research with the consequence that their voices have been virtually silent, and their stories typically told by proxies (Hellström, et al., 2007). Obtaining consent from people living with dementia raises important ethical issues which are compounded when video data is generated and or disseminated. My research draws on recent inclusionary practices in dementia scholarship where consent is understood as process consent (Dewing, 2007). In this study, obtaining process consent began with obtaining written informed consent and approval from the resident participants’ designated substitute decision-makers. This step ensured transparency through including the designated substitute decision-makers in the process from the beginning.  All of the resident participants had advanced stages of dementia and their representatives were identified by the RCC as their designated substitute decision-makers. While the residents lacked the capacity to provide informed consent, I respected their ability to provide assent and assert dissent. I understood assent as an indication of affirmation or willingness to participate in the study (Black, et al., 2010). I recognized assent as the residents’ willingness to engage with me in go-along conversations, in participant observations, and to be video-recorded. In turn, I understood dissent as a refusal of the above, and I privileged dissent as over-riding informed consent. Ensuring an on-going process of consent allowed me to acknowledge the residents’ enduring rights to have their expressions of autonomy and choice respected. This process was described in detail during my initial meeting with the family members and the residents. 94  Throughout the entirety of the data gathering period I sought assent prior to each engagement with resident participants; I considered both verbal and non-verbal indicators in determining assent and dissent. In initiating contact with the residents, I introduced myself and explained my purpose in a manner that I believed to be true to the study aims and understandable for the resident participants. People living with advanced dementia can be unsure and suspicious, and my goal was to have the resident participants feel comfortable and safe in engaging with me. During one participant observation session I sensed that the resident participant was becoming distressed by seeing me writing field notes. Ed appeared to be agitated and I believed seeing me taking notes was escalating his agitation. I took this to be a sign of dissent and put my notebook away, ending that participant observation session. Over the seven-month data gathering period I recognized and respected two expressions of dissent from resident participants.  As part of my ethics proposal I was directed to create an assent document that paralleled the informed consent albeit in a much briefer and simpler version. In meeting with the first resident recruited (i.e. Ed), I explained who I was and described my data gathering methods including the use of video-recording. Ed listened attentively, smiling and nodding as I described how I would watch him participate in some of his daily activities and visit with him to talk about his day. He verbally indicated that he would look forward to spending time with me. As our interaction progressed, I felt confident that, in the moment he was indeed expressing initial assent regarding the study. However, when I showed Ed the assent document and read through it with him, his brow was furrowed, and he looked very serious. While he verbally indicated he understood the document and willingly signed it, I sensed that he was uncomfortable. I was very uncomfortable as well. This was clearly an ethical dilemma; in reflecting on this interaction, I did not believe he understood what he was signing or why he was signing it. In fact, I doubt that 95  Ed had signed a document in the past months and perhaps years, thus asking for his signature on an official-looking paper was stressful for him. Further, I knew that Ed had significant short-term memory loss and would not remember signing the assent document or having the discussion regarding the study with me. In our next meeting, I confirmed that this was the case. Consequently, I disregarded his signed assent; instead, and in keeping with the model of process consent, I sought his assent with each interaction and within the same interaction as necessary (Dewing, 2007).  Reflecting on my experience with Ed, I did not ask any of the other resident participants to sign the assent document. Again, I believe it would have been unethical to ask the resident participants to sign a document that they would neither understand nor remember signing. That Ed had signed the assent was a measure of my power in the researcher-participant relationship. Likely I could have convinced the other residents to sign the assent forms too, but to what end? Instead, I stayed true to establishing and ensuring process consent through seeking indicators of assent with each resident participant during each interaction.  The indicators of both assent and dissent varied with each resident participant and varied in different situational contexts for the same individuals. Three of the residents could express themselves verbally quite easily. In confirming their assent, I looked for verbal affirmatives as well as any contradicting non-verbal indicators. Throughout the course of the field work I interpreted only two indications of dissent. Dissent was acknowledged when Mary who was verbally expressive, simply replied “no, it would be boring” when I asked if we could sit together and visit for a while. The second incident of dissent involved non-verbal indications of agitation that I interpreted when Ed observed me writing field notes. Non-verbal expressions were an important vehicle for enabling the residents to communicate both assent and dissent, especially 96  for Edith and Anna who had very minimal verbal language ability. Staff and family members provided insights regarding how to interpret the residents’ expressions of well-being and ill-being. Careful observation and assessment of both verbal and non-verbal expressions helped me to ensure that assent was obtained, and dissent was respected on an on-going basis throughout the research process (Black, et al., 2010).  4.9.2 Video-recording. Video recording and the creation of video data add a layer of complexity to research related ethical considerations. An on-going process of consent is important for building trust in participants when visual images are generated (Pink & Morgan, 2013). Additionally, questions of anonymity and confidentiality are heightened when these images will be used for knowledge translation (Harrison, 2002). I anonymized all text data generated through interviews, field notes, and memos, however this was not possible for the video data. The video data generated in this study focused on the resident participants, and their designated substitute decision-makers were aware that visual images would be utilized in future knowledge translation activities. Consequently, the informed consent documents clearly outlined the processes related to video data gathering, the on-going management of the video data, and its future usage in knowledge translation; the informed consent documents included a signed video release.  Video-recordings were focused on the resident participants. However, because my research questions considered social engagement, there were opportunities for filming where individuals other than the resident participants (e.g. staff, other residents) were included by default. This necessitated obtaining signed informed consent from these indirect participants. I took care to avoid inadvertent filming of individuals who had not provided consent. The intergenerational dance programme (in which two resident participants took part) presented 97  particular challenges in this regard. The children who participated in this programme attended the neighbouring elementary school. In seeking permission to video-record during this activity, I met with the school principal and the teacher responsible for coordinating the children involved. With the support of the school administrator, I obtained indirect participant informed consents for the children from their parents or guardians. These consents included a video-release. The children were considered indirect participants recognizing that their involvement in the study was only as a result of inadvertently being part of a video-recording that focused on the resident participant. While the children were not the focus of the video-recording, they were included in the filming of the resident participants as they partnered during dance. Ten of the twelve children participating in the dance programme provided consent. I did not capture any images of the two students whose parents had not provided consent. Staff members also signed an indirect participant informed consent when their image was included in video-recording.  4.10 Summary   In chapter four I described and discussed the research design and methodology that guided and structured my dissertation research study. Decision-making around the setting, sample, and data gathering and analysis methods were outlined along with discussion regarding rationale and some of the issues encountered related to the research process. Chapters five, six, and seven will explore and examine how the data was interpreted and analysed in the creation of thematic narratives that reflect the understandings and claims that emerged in addressing my research questions. Chapter five explores what might be learned by unpacking the tensions that emerged related to my dual roles and identities as a nurse-researcher. Chapter six explores the residents’ experiences of meaningful engagement, focusing on their enduring abilities. Finally, 98  how these experiences were understood by both family and staff members underpins the discussions in chapter seven.    99  Chapter Five: A Reflexive Accounting of Researcher Roles and Identities  “All I can do is be me, whoever that is.” -Bob Dylan (May 1965, Dylan Interview) 5.1 Introduction Throughout the course of conducting my dissertation research, it became clear that I had roles and identities that were intertwined in ways that significantly impacted and influenced the research process and outcomes. Through my past experiences in the study setting, I was viewed as an insider; I had also gained a privileged view of the inside. While it is common in qualitative research for the researcher to be part of the social group being studied (Bonner & Tolhurst, 2002), the extent to which I had knowledge and experiences related to the residents living with dementia in my dissertation study setting, prompted and required that a careful reflexive process be undertaken. This reflexive analysis occurred both in the moment and in retrospect, in considering the study design, the construction and analysis of data, and ultimately the study outcomes.  Chapter five unpacks the tensions that arose as I negotiated my role as researcher under the shadow of my well-established clinical identity. I begin by explicating some of the beliefs, values, and qualities that ground my identities and roles as both a researcher and as a nurse. These roles and identities are interrogated in terms of my purpose, goals, and positioning with respect to the study participants. Next, my experience of navigating within and between my roles and identities is explored through a careful analysis of my researcher-participant interactions in two case studies. This chapter concludes with considering the implications of navigating these 100  tensions through a reflexive accounting of the potentially complementary ways that my researcher and nursing roles and identities have affected the study.   5.2 Explicating My Researcher Roles and Identities  My well-established relationships with both the research setting and staff required early and on-going reflection and analysis of my associated identities and roles in this environment. Thus, it has been important to interrogate my identities as both nurse and researcher throughout the research process. In reflecting on these identities and roles, I have considered both how I identify myself, and how I am identified by staff and participants. For example, what were the values and beliefs that I carried into the field as a nurse? How did these values and beliefs influence how I enacted my role as a researcher? How did my conceptual framework, and epistemological and ontological underpinnings reflect my nursing identity? Subsequently, how did these assumptions shape the approach I took in entering the field as a nurse-researcher? 5.2.1 My insider status. The term insider status is used to describe researchers who conduct studies with populations in which they are members and share identities and experiences with the participants (Asselin, 2003). My nursing identity and practice experience afforded me information and insights regarding the setting and participants that I would not otherwise have had. Thus, in order to reflect on how my insider status and inside information influenced the research process and outcomes, it is important to position myself in relation to the study (Pelias, 2011).  I have worked in a variety of nursing roles for over 25 years. For much of my nursing career, my practice has centred on the care of older adults in both community and long-term care home settings. Thus, I have considerable experience and expertise in working with the 101  population that includes my study participants (i.e. residents living with advanced dementia, family members, long-term care staff). It is also important to acknowledge my familiarity with my specific study setting. For over 10 years, I have supervised nursing students in providing care for residents in the long-term care home where I conducted my dissertation research. This supervision has involved approximately 300 hours each year, during which time I closely supervise, role model, and assist nursing students in meeting the physical, emotional, and social care needs of the residents. In this role, I also work closely with the care staff, particularly the nurses and the Resident Care Aides. As an instructor from the university, I am viewed as a highly skilled care expert and the RCAs frequently approach me to share their concerns and seek information regarding dementia and dementia care. Additionally, the nursing staff often include me in discussions and decision-making, particularly when it involves the residents assigned to the care of my nursing students.  Thus, my positioning in relation to my dissertation research has been defined by inside information, insights, and familiarity. I have a strong clinical knowledge base related to meeting the holistic care needs of residents living with dementia, including those with advanced disease symptoms. I have also had significant experience interacting with both family and staff members in long-term care homes. Further, in terms of the specific study setting, I was already familiar with the physical environment, staff roles, and the daily routines; and, I was well-known to most of the nursing and allied care staff working there. Consequently, on entering the field, I was both knowledgeable and well-known.   102  5.2.2 Reflections on being a nurse.  5.2.2.1 Nursing identity. My identity as a nurse was integral to both the study design and the dissertation research process. I have practised as a nurse for over 25 years, guided by the values and beliefs that underpin this professional identity. In particular, my nursing identity has shaped my understanding of both the person and therapeutic relationships subsequently influencing the assumptions and beliefs that underpin my research. While concepts of the person and relationality are discussed as part of chapter three’s explication of my conceptual framework, my aim here is to explore more specifically how the foundational beliefs and values underpinning my nursing identity and practice have, by extension, influenced this study.  Central to nursing’s theoretical foundation is an understanding of the person as being more than their disease or diagnosis (Thorne, et al., 1998). Thus, as a nurse, I have a holistic and contextual view of the person that recognizes their physical, psycho-social, and spiritual dimensions. I understand each person to be unique and complex. Thus, while my work as a nurse is intimately associated with the care of the corporeal body, my understanding of the individuals I care for extends beyond the physical body. It is through knowledge of the patient’s lived experience that nurses come to know the patient as a person (Sakalys, 2006). Nursing’s holistic view of the person supports my embodied understanding of the person, recognizing non-verbal communication, behaviours, and bodily movements as expressions of their lived experience. Nursing’s understanding of the person through holistic and embodied lenses aligns with current progressive and inclusive understandings of persons living with dementia (Bartlett & O’Connor, 2010; Hughes, 2014a), and supports my understanding of the persistent personhood of the resident participants in my study despite their cognitive, communicative, and functional deficits. 103  Early nursing theorists also recognized the powerful influence of the nurse-patient relationship. Carper (1978) observed the therapeutic nature of this relationship, noting the importance of the way nurses viewed themselves in relation to their patients. Carper drew on German philosopher Martin Buber’s theorizing of I-Thou relationships, in constructing her conceptualization of the nurse’s personal way of knowing. She theorized the therapeutic nursing relationship through a leveling of individual standings within the nurse-patient dyad. This understanding of the therapeutic relationship was later echoed in Kitwood’s (1997) exhortation to understand personhood in dementia in relational terms, positing that even with advanced dementia, a person-person way of meeting and relating was possible.  The values and beliefs that I hold as a nurse influence the ways in which I understand and interact with my patients, and by extension, my study participants. Thus, this identity has laid the foundation for my understanding of people living with dementia through embodied and relational lenses. Drawing on these underpinnings, my study utilized methods designed to include the voices of the resident participants through exploring their expressions of being in the world in embodied and relational ways. Additionally, my clinical experiences related to the therapeutic nurse-patient relationship have also influenced my understanding of the person, particularly in relation to myself. Thus, in interacting with the research setting staff and study participants involved in the study, I sought to build reciprocal, respectful relationships while recognizing the challenge that perceived and real power differences might present by my identity as nurse-expert. 5.2.2.2 Nursing role. Nursing practice is centred on developing trusting nurse-patient relationships and highlights the expertise of nurses in engaging individuals through building rapport and fostering trust (Robinson & Thorne, 1988). Thus, my nursing practice has guided the way I approach and engage with patients; it is central to how I enact my nursing role. As a nurse, 104  I am typically viewed as a trusted care-provider, and subsequently afforded intimate physical and emotional access and engagement with the patient. In reflecting on the impact of my nursing role in this study, I believe my ability to foster trust and build rapport was critical in facilitating participant recruitment and developing researcher-participant relationships that enabled rich data gathering.  Within therapeutic relationships, nurses are skilled in conducting holistic and detailed patient assessments. Typically, my clinical patient assessment data includes identifying evidence or indicators of both physiological and psychological symptoms and norms. In turn, my research participant observations were both broad and inclusive, focused on the participant as part of the larger observation environment, as well as on detailed observations of each individual participant. My field notes and analytic memos clearly illuminate my nursing perspective as evident in my reflections constructed during detailed participant observations. For example, as I conducted participant observations with Anna, who was very frail, I made note of her pallor and respiratory rate; both are important clinical nursing assessments. Reflecting on the impact of my nursing identity in the moment, I wrote: “With Anna I recognize that my perspective is very much that of a nurse – her colour, her resps [sic] etc” (Anna, field notes, December 13). Living with advanced dementia, all of the resident participants were physically frail, consequently my detailed participant observations often included similar data that were reflective of my nursing clinical assessment skills.  The role of the nurse is centred not only on conducting patient assessments, but also requires acting on assessment data; nurses both identify problems and intervene to resolve or ameliorate them. In conducting participant observations, my nursing eye would often assess something that could require my intervention. These interventions would involve seemingly 105  small or insignificant actions that I would typically consider as part of routine care, such as re-positioning a resident participant. While I was content that the larger care interventions (e.g. administering medications or providing personal care) were being managed by the nursing care staff, I was frequently drawn to intervene when assessing the basic comfort and care of the resident participants. My field notes and analytic memos point to the tension I felt with respect to recognizing these indications for nursing interventions. For example, in conducting an observation session with Mary I noted:  This morning she is quite dishevelled. She has unmatched slipper socks. These socks are typically loose and ill-fitting. Her socks are slipping off her feet. Her feet are on the floor, not on the foot-rests of her wheelchair. With her socks half-on and half-off, I am tempted to go and fix things (Mary, field notes, November 21).  While Mary’s ill-fitting and un-matched slipper socks did not constitute a clinical risk, my observations were still drawn there, and I was drawn to intervene. The analytic memo associated with this field note reflects the tension I felt in debating whether or not to intervene. Ultimately, I decided “it was more an issue for me as a nurse than a researcher and that really Mary wasn’t in any distress related to her feet or socks” (Mary, analytic memo, November 21).  This seemingly insignificant observation of ill-fitting and un-matched slipper socks clearly reveals my foundational nursing values, and how present my nursing identity was in positioning me during the study: For me, seeing a patient looking dishevelled makes me question whether they have been cared for. It is a value I hold as a nurse that patients who I care for are clean and comfortable. I often ask my students to look at the residents after they have provided care 106  and decide whether it looks like someone has cared for them or not (Mary, analytic memo, November 21).  I experienced tension related to my assessment of issues around care and comfort and potential intervention, both with the residents in the study and other residents living in the care home, throughout the entirety of my fieldwork. My nursing identity and role fostered and supported my ability to build rapport, conduct assessments, and identify interventions, all of which were important factors in the way my study unfolded. In reflecting over the course of the study, there is a strong thread reflecting my nursing-essence3, that can be seen running through my field notes and analytic memos. My nursing-essence created tensions, that both benefited and challenged the research process; as a result, I believe my research data, findings, and experience was enriched. 5.3 Benefits as a Nurse-Researcher Initially, as I engaged in designing and conducting this study, I had more experience and expertise as a nurse than as a researcher. In reflecting on my positioning, there were clear benefits related to my insider nurse identity as the research process began. These benefits related primarily to my familiarity and knowledge of the setting and participants, and extended throughout the research process, beginning with the generation of my research questions. Specifically, it was my experiences caring for people living with advanced dementia in long-term care nursing homes, and subsequently my knowledge of the issues facing this population, that generated my research questions.   3 I use and italicize the term nursing-essence to reflect and highlight the nursing values, beliefs, and qualities that have become integral to my professional and personal identity, and subsequently influence my assumptions, understandings, responses, and actions. 107  Conducting my dissertation research in a healthcare setting where I had inside knowledge and experience and was a well-known and well-respected nurse had benefits. The following sections explore these benefits in terms of my familiarity and acceptance in the setting; my confidence in engaging with the participants; and my ability to build trust and rapport. 5.3.1. Familiarity and acceptance. Familiarity and acceptance in the research setting have been seen to provide an important level of trust in support of research studies (Bonner & Tolhurst, 2002; Dwyer & Buckle, 2009). My familiarity through supervising nursing students in the study setting was key; I chose this place because I knew I would have access to the participant population I wanted to study. Additionally, I had long-term and respected relationships with the long-term care home administration and staff; this underpinned both the manager’s support for my study, and the Resident Care Coordinator’s (RCC) willingness to be a co-investigator on behalf of the institution4. Once in the field, the trust and support of the staff was evidenced by their assistance in participant recruitment (see section 4.5), and their support for my data gathering methods.  My inside knowledge and familiarity in the setting was valuable in data gathering, as I was able to schedule opportunities and strategize around the best ways to conduct my various data gathering methods, based on my prior knowledge of the daily routines of the unit and the resident participants. 5.3.2. Confidence and expertise. The level of confidence and expertise I had in my ability to engage and interact with the resident participants was another advantage of being a nurse-researcher, particularly in light of the potential for individuals living with advanced dementia to respond and interact in unpredictable and challenging ways. As an experienced  4 In studies conducted in health authority settings where the principle investigator is not a health authority employee, the health authority ethics review board requires that a health authority employee be named as a co-investigator.  108  nurse, I was confident in my skills to successfully engage with the resident participants, despite the challenges that can be associated with living with dementia. Through my nursing practice I have developed expertise in providing bodily care for dependent older adults, as well as skills in interacting and communicating in embodied ways when individuals no longer possess the ability to engage verbally. Consequently, I was confident in my ability to navigate interactions with the resident participants even during times when they were struggling with symptoms and behaviours related to delirium, confusion or anxiety.  While all of the resident participants were at an advanced stage of dementia, their lived experiences of dementia were highly varied. For example, Mary was generally appeared to be suspicious while Edith appeared to be trusting; Anna communicated in mostly embodied ways while Alice was easy to engage in verbal conversations. Thus, the diversity among the resident participants necessitated different approaches to communication and engagement. Four of the five participants were identified as having a purple dot5, however, only Ed demonstrated aggressive and agitated responses during my field time. During my participant observations, I found Ed to be significantly confused and distressed on several occasions. At those times I relied on my nursing assessment skills and my prior experiences in working with people living with dementia: I feel safe but am very alert to the fact that he is a big person and has struck people before, so I know that if I’m in his space I have to be wary and need to be purposeful in what I’m trying to accomplish. I use my skills at walking alongside his distress, making  5 The purple dot is a communication tool used within the Health Authority to indicate that there is a risk for violence when providing care for a particular resident. In the long-term residential care home where my study was set, a small purple dot sticker is affixed to a resident’s chart and also beside their name plate at the entrance to their room if they have been assessed as being at risk to become violent. The purple dot serves to alert care-providers that the resident has a history of violent behaviour. With this knowledge, it is hoped that care-providers are better able to anticipate and prevent situations where violent or aggressive behaviour occurs. 109  things normal and removing challenges. I reassure him that we know each other, and as I inquire about what he is doing I validate it, offer help, and normalize with a bit of small talk that respects him without challenging him. I can feel that it is working . . .  and his face begins to relax. (Ed, analytic memo, January 17) This example is not intended to suggest that following our interactions, Ed became fully oriented, calm and settled. Instead, I include it as an example of that thread of nursing-essence that is part of the fabric that weaves together the narrative of lived experiences that are my dissertation. It is an example of the confidence and expertise that I drew from when engaging with the resident participants. It was my ability to interact and engage with the residents that allowed me to confidently assess their assent and recognize their dissent, thus ensuring on-going consent and gathering a comprehensive corpus of data reflecting the range of the resident participants’ lived experiences.  5.3.3. Trust and rapport. My assessment and communication skills, acquired through years of nursing practice, were central to my ability to build rapport and foster trust with the resident participants. For example, as I was preparing to leave the research setting one afternoon, I observed that Ed appeared anxious and distressed as he tried to communicate to the staff that he needed to catch the bus to go home. At this time, I had been in my role as a researcher gathering data, however I quickly felt myself shift into a nursing role focused on engaging with him, in an attempt to address and reduce his distress. In reflecting on my field notes and analytic memos regarding this experience, I recognize how central my nursing expertise was in my actions and approach: I walk alongside him in his current reality, I share where he is and what is important to him. How would a non-nurse do this? My ability to assess in an on-going way while I’m 110  talking to him, settling us both in the dining room with some coffee is really important. I assess his expression and other non-verbal indicators of agitation – coffee is a really good equalizer or normalizer. (Ed, analytic memo, October 24) I qualify that successfully intervening in situations similar to the one described above is not the sole purview of nursing; however, my intervention with this resident participant exemplifies the advantage that my nursing-essence provided. While initially in my researcher role I had instinctively shifted to engage with the participant in a nurse-patient interaction where I focused on building trust and rapport. Subsequently, as time passed and the situation unfolded, my identity shifted back to that of researcher in a researcher-participant relationship. Ultimately, I believe my ability to move between these roles facilitated rich data gathering both in this example, and throughout the study.  5.4 Challenges as a Researcher-Nurse  As outlined in the preceding section, there were clear advantages related to my nursing expertise and practice experiences that supported conducting this study. However, there were also challenges associated with having inside knowledge and being familiar in the study setting that needed to be considered.  5.4.1 Assumptions based on prior experiences. Prior to entering the field, in discussions with my dissertation supervisor, the question was posed regarding my insider status: “what might be missed, by virtue of my nursing perspective” (journal notes, February 26)? Studies interrogating the insider status in qualitative research point to the potential for researchers to miss probing for deeper meanings when they have prior knowledge and assumptions of the population being studied (Asselin, 2003; Dwyer & Buckle, 2009). 111  Understandings based on past experiences can limit the ability to look beyond what is already known (Dwyer & Buckle, 2009). Utilizing a range of data gathering methods helped to challenge assumptions I might have brought to the field. In particular, using video-recording offered a way to see the participants in a new light; as Silverman (2016) observed, visual images make the familiar strange. Reflections on my experiences in video-recording the resident participants are explored in depth in section 5.5.2 following.  Jacoby (2017) points to the importance of incorporating a reflexive process early in the research process to decrease the risk for prior experiences and assumptions to cloud or limit understandings. In bringing both a nursing lens and extensive practice experience to my research, I recognized that I might not see what I wasn’t looking for. Thus, I consciously incorporated reflexive analysis early, and throughout the entirety of the research process. Reflexivity was particularly critical during data gathering. During participant observations, I reflected on how my dual lenses (i.e. nurse and researcher) influenced my observations and the subsequent construction of field notes and analytic memos; these reflections were captured within the analytic code nurse researcher role. These codes highlight and explore the tensions I experienced and the questions I formulated related to data gathering and analysis, and my evolving understanding of the impact of my dual identities in the setting.  One of my early field note and analytic memo codes was nurse researcher role; this code was largely focused on the benefits of my insider status, while questioning how the process and outcomes would be different if this were not the case: The staff greet me, I always feel welcome. My comfort and familiarity open doors and make my process easier. How would it be different if I was a stranger? Would I be more objective in my analysis of observations? I start with a relationship with Ed and Edith, I 112  know Alice a bit. I do not know Mary and Anna. I do feel a little less sure in the interactions with residents I don’t have a relationship with. Will I get more and better data when I know the residents or more [and better data] without? (Ed, analytic memo, September 24) As a nurse, I was confident and well-known; as a researcher, I was tentative and unsure. On reflection, I feel that my lack of confidence as a researcher actually served as a safeguard, preventing me from relying on assumptions or taking things for granted, allowing me to remain open to the potential for the unknown and unexpected despite my familiarity in the setting. Any concerns that I would miss or overlook something during observation sessions because I was expecting what I already knew, quickly faded. I quickly realized that there was much that I did not know. For example, while I knew a lot about Ed’s care needs, I knew little of the sophistication and depth of his abilities. Through my researcher lens I learned how well he responds to music, how well he sings, and how carefully he follows social rules, be it during games or around the dining-room table. Despite his significant cognitive losses, Ed remained able to play structured games. He not only took his own turn, but keenly followed the play of all the other players, interjecting with the kind of banter that often accompanies experienced players. Before the player beside him threw his blue ball, Ed would call out “true blue, true blue”, cheering for a good shot to be made.  Over time, my reflections coded as nurse researcher role became more nuanced, examining the ways in which I shifted between roles and why, and exploring how aspects of both identities influenced my role in the moment. This navigation of roles is highlighted through unpacking the two case studies in section 5.6.  113  5.4.2. Establishing my identity. Establishing my identity and credibility as a researcher was also challenging. It was challenging to ensure that I was viewed as a researcher in a setting where I was so well-known as a nurse. It was also challenging to view myself as a researcher when I was so comfortable and experienced in my nursing role. I recognized, upon entering the field, that in order to be seen as a researcher, I had to look and act like a researcher. Wearing street-clothes as opposed to a uniform and carrying a notebook and video camera rather than a stethoscope helped to position me as a researcher. Without the tools of my trade, I felt less likely to intervene as a care provider. Reflecting in the moment was also critical in addressing my role tensions; if I determined that staff would address the care issue, “while tempted, I [didn’t] intervene” (Alice, analytic memo, January16). Thus, consistent with the advice of others (see for example, Bonner & Tolhurst, 2002; Jacoby, 2017) I was intentional in both the ways that I dressed, and the ways that I acted in an effort to be visually removed from having clinical responsibilities.  Increasingly, although my nursing-essence was always present, I was able to establish my identity as a researcher: The feeling that I am one of them is palpable...however, at the same time folks are beginning to identify that I’m there to do research, not to work with students. So, there is also an attempt to let me sit quietly in a corner and make my observations and notes (journal notes, August 16). Watts (2011) points to the observer as participant role; thus, not only did I have to establish a researcher identity, I also had to create a participatory identity. During data gathering sessions where I participated directly in activities with the resident participants, I assumed a participatory identity within the context of the particular field encounter. For example, when participating in music therapy groups with resident participants, I became a member of the 114  group. In this role, I took turns and took direction. I was neither directive nor in charge. In fact, I was admonished by the Music Therapist (MT) for intervening to help a group member to hold her instrument. The MT pointed out that my desire to help, so central to my nursing-essence, was inhibiting the resident’s opportunity to express her autonomy and agency. Similarly, when participating in a Bingo game, I had to learn, and play by the rules. In both of these examples, my positioning as a researcher-participant was in contrast to the role I would have had as a nurse. While I struggled initially to shift away from my nursing identity and see myself as a researcher in that setting, it was also challenging for the staff who knew me so well as a nurse to view me as a researcher. This had implications in both recruiting staff member participants and conducting their interviews. Asselin (2003) noted that prior relationships between the researcher and participant, have been associated with participants providing the answers they believe the researcher is seeking, rather than responding more openly. While I was able to recruit participants relatively easily, there were staff members who expressed concerns regarding participating. These individuals were all RCAs; they also expressed concerns regarding their ability to provide good answers. I sensed that they were intimidated by the interview process and did not want to let me down or compromise the study. During the interviews they were hesitant in answering and responding and required more prompts than the other participants. Despite my efforts to put them at ease during their interviews, I felt that it was difficult at times for them to view me as a researcher and view themselves as having important knowledge to share.  5.5 Developing My Researcher Skills  In addition to establishing my identity as a researcher, developing confidence in my research skills and my ability to enact the researcher role was another hurdle to overcome. Where 115  I was confident in conducting clinical assessments and interventions, I was less confident in initiating and implementing my data gathering methods.  5.5.1 Considerations related to participant observations. I was initially unsure how best to structure my participant observation sessions, especially when multiple participant residents were engaged in the same activity. Following my first observation session with multiple participants, I reflected on my challenges; I needed to implement a systematic approach where I could maintain a focus on answering my research questions within the complexity of a multi-participant context and environment. This approach involved starting with taking a broad inventory of the environment before making more detailed observations, moving between individual participants throughout the session. As I spent more time in the field, residents and staff became used to seeing me as a researcher, sitting at the edge of the room writing notes. I became familiar to the staff and participants in new ways and in a new role, and as I became more confident in my researcher role, my participant observations became more detailed and richer. 5.5.2 Considerations related to video-recording. I included video-recording in my study design, recognizing its power to communicate the visual voice. While all of my resident participants had some ability to communicate verbally, their verbal skills were compromised by significant hearing and cognitive deficits. Thus, I needed a data gathering method that could provide opportunities for people living with advanced dementia to speak for themselves, albeit in embodied ways, as opposed to having their experiences translated by others. However, using this method of data gathering required consideration of complex ethical issues as well as the development of new skills related to video-recording (Moser, 2010; Puurveen, Phinney, Cox, & Purves, 2015).  116  5.5.2.1 Developing camera skills. Video-recording participants required me to develop a new set of skills related to filming. Initially, I experimented between using a small tripod versus simply holding the camera. Additionally, during my first video sessions I attempted to include myself, as a way of including the relational aspect of the go-along conversations. This proved to be distracting for both myself and the residents. I was also very conscious to not include anyone in the filming other than the participants; thus, I frequently changed the direction of filming, at times simply pointing the camera to the floor for a few seconds or turning the camera off in order to avoid filming individuals without their consent. Using a tripod and trying to include myself in the filming also proved problematic. Ultimately, my goal was to film the participants in the least obtrusive manner possible, while ensuring their assent throughout, and avoid filming non-participants. Consequently, I simply held the camera while filming, often steadying it with my other hand. In this way I could avoid filming non-participants and keep my attention on the participants.  5.5.2.2 Positioning the researcher and the lens. As a nurse, I am typically viewed in a position of power relative to, and by my patients. My care usually involves interventions and explanations that are accepted by trusting patients rather than negotiated. In this study, I wanted to mitigate my power position, to level the power as much as I could in order to raise the voices and thus privilege the experiences of the participants. Taking direction from Carroll (2009), I video-recorded participants in an open and overt manner hoping to diminish any perceptions that I was filming with intent to surveil or objectify the participants. My intention was neither to hide nor disguise my data gathering. Instead, by holding the camera myself and focusing closely on the participants, rather than taking in the wider environment from a distance, my presence and the fact that I was filming was made obvious. I became part of the data gathering process in a 117  very embodied way where my choices of movement, perspective, and position were embedded in the resultant video data (Silverman, 2016). As I held the camera and moved along with the resident participants as they engaged directly with me and others in activities and interactions, I was intimately engaged in the construction of the data. Ultimately the research data gathered and analysed, and the resultant knowledge outcomes, are a co-construction between me, the participants, and the research environment. I took responsibility for deciding which activities and which resident participants I would video-record and when, however these decisions were not made in isolation. My decisions regarding filming were all made based on my knowledge and understanding of each resident. In anticipation of using video-recording as a data gathering method, it was necessary for me to know each of the resident participants; I spent time engaged in participant observations and had conducted interviews with all of the family member participants prior to initiating video-recording. It was my knowledge of each resident that guided my understanding of their expressions of assent; relying on proxy informed consent alone was not enough (Puurveen, et al., 2015). For example, I chose not to film Mary, recognizing that she frequently responded with suspicion in social interactions. In observing her responses in a group setting, I noted that “she [didn’t] interact with the others, this [was] likely too much for her. She can be abrasive and easily frustrated with other residents who might not understand what she is saying or wants them to do” (Mary, analytic memo, October 10). In consideration of her potential level of discomfort, I decided not to approach Mary regarding video-recording. Similarly, while I did film Ed during some go-along conversations and activities, I chose not to film him during periods of duress. While I acknowledged my power as the researcher, I took my lead from the participants, respecting their agency in directing my decisions regarding data gathering.  118  5.5.2.3 Developing comfort with ethical considerations. I was excited by the potential for gathering visual data through filming, however I had a level of discomfort regarding both my camera skills, and the intrusive nature of filming. I noted: “[in] thinking about how I would film during a group event, I’m not feeling confident re the filming piece. I’m so conscious of how intrusive it seems” (journal notes, September 29). Somehow filming the residents seemed much more intrusive than observing them and recording notes; consequently, I felt tentative in seeking their assent and asking to film them. I felt that their visual images were more personal and permanent than my written field notes, which heightened the ethical stakes in gathering this type of data. While I had obtained informed consents for all the resident participants which allowed me to utilize the video images in future knowledge translation, the ways in which these images would be viewed and interpreted were unknown.  I sought assent from the resident participants prior to each filming session, but at times it was hard to assess their level of understanding or whether they had any memory of previous filming sessions. However, what became clear to me, was that the residents were interested in the camera and were quite willing to be filmed. When I turned on the camera and engaged with the resident participants, they frequently smiled and posed, indicating an understanding that they were being filmed. Alice was particularly concerned about her hair and clothes during filming. In fact, “instead of asking more questions regarding the purpose of the video, she ask[ed] me whether she should wear her scarf.  She wonder[ed] whether she should comb her hair” (Alice, field notes, January 16). She understood she would be filmed and wanted to prepare herself. With Anna, ensuring assent was less obvious but still sufficiently clear to me. I filmed her exclusively during the intergenerational dance sessions. Each time I filmed her, I showed her the camera and explained what I was doing. I interpreted her non-verbal responses of smiling and 119  looking at me as I focused the camera on her as indications of assent. By recognizing the agency of the resident participants with respect to participating in being filmed, I was seeking to both assure assent and level the power positions. As noted, I filmed the participants in an open and overt manner. This resulted in opportunities to provide video feedback for the resident participants, which in turn provided another opportunity to assess their expressions of assent and provided another layer of data. For example, I filmed Alice playing the piano one morning, and as she finished, she turned to me looking for affirmation. I praised her ability and played back the video clip for her to see. She watched intently, frowned, and commented “I didn’t sing”. I filmed her again; this time she played and sang. She critically evaluated this second video clip and gave me a smile and a nod; clearly, she felt the video clip was better the second time with the singing. This interaction with Alice provided me with a level of understanding that went well beyond considering her ability to play a long-remembered piano piece; her ability to evaluate, to try, to do well, and to take pride were also apparent. These were new and important understandings of Alice and her sophisticated experiences of meaning.  Again, as time passed and I became more adept in using the video camera, more familiar with the resident participants, and more confident in my researcher role, my concerns faded. Using video-recording as a data gathering method required me to develop new skills and address potential and actual ethical issues related to power and consent. Capturing these images on film allowed me to construct and re-construct my understanding in a richer way than field notes alone.   120  5.6 Navigating the Tensions Between Roles and Identities  While conducting this study, I moved along a role-continuum where I was never only a nurse and never only a researcher, thus shaping the research process as I shifted between roles. I did not attempt to bracket and exclude my nursing identity and practice experiences while conducting my data gathering as recommended in some approaches to qualitative research (Asselin, 2003; Dwyer & Buckle, 2015). Instead, I acknowledged and reflected on both my nursing and researcher roles, understanding the potential for my research to be strengthened by my nursing identity and practice experiences. The following case studies demonstrate ways in which I shifted between my identities as nurse and researcher, and the impact that these shifts had on my interactions with the resident participants and ultimately with how my identity shifts influenced my data gathering and understandings of the data. 5.6.1 Case study one: a trip to the farm. It was late afternoon and I had been gathering data with some of the other participants. I was preparing to leave the setting when I heard a chair alarm6 go off. In hearing the alarm, I immediately looked around to see whether any residents were at risk, and heard the staff call out that it was Ed. He was standing in front of his wheelchair and was speaking with two of the recreation staff members. I could see that he was upset and assuming my nurse identity I went over to see if I could help: I approach Ed, he is standing and flushed in the face. He is clearly anxious and asking the two staff members with him about the bus. I begin to figure out what is going on. It appears he wants to catch the bus and go home to the farm. It is getting to be evening and  6 Residents living in long-term residential care homes who are deemed at risk to fall, typically have their beds and chairs alarmed. Sensor pads are placed on surfaces of these resident’s beds and chairs designed to alarm when there has been a significant shift in weight such as when the resident stands. The alarms are intended to alert the staff to the potential risks in having the resident rise from their bed or chair unassisted. 121  he is needed. He asks the staff which bus they are waiting for. They tell him the bus isn’t coming yet and he will need to wait. They are anxious to settle him as they are leaving at the end of their shifts. (Ed, field notes, October 24) As the above field notes indicate, my first intervention was to assess the situation. My clinical assessments skills guided me in conducting a quick but holistic assessment where I focused on Ed’s physiological indicators of distress, in addition to considering the involvement of the other staff members and the impact of the broader environment. I also drew on my prior knowledge regarding Ed experiencing anxiety and distress, and my knowledge of a recent fight he had with another resident where he had punched that man. At this point, I was fully in a nursing role, where my actions and understandings were guided by my nursing identity.  Confident in my assessment of the resident and the situation, and confident in my nursing skills, I assured the staff members that I would stay with Ed and ensure that he was safe. I was focused on intervention. Informing Ed that I too, was waiting for the bus, I was able to re-position him in his wheelchair and move us both away from the exit doors into the dining-room, all the while continuing to assess his level of distress. In reading through my field notes, it is clear that I was functioning in a nursing role at this point; I was focused on the iterative nursing process of assessment and intervention. While we sat and talked in the dining-room, I listened and acknowledged his distress about needing to get home to the farm and the work that needed to be done there. I brought us both coffees, an intervention that I have found to be very useful in helping to define and diffuse stressful talk into a more conversational mode. At this point, Ed remained upset: He repeats the fact that he needs to go and is anxious to explain where the farm is. He begins drawing on the tabletop with his fingers making large movements to show the 122  highway and small circles to show where the farmhouse and the barn are. His movements are very determined and almost angry. They seem to mirror his emotions. He is clearly frustrated. (Ed, field notes, October 24) As Ed created this virtual map with his finger on the table, it struck me that his map was, in fact, surprisingly accurate. It was with this realization that I became curious and started to shift into my researcher role. While Ed remained upset, my assessment indicated that he was not escalating and, in fact, was slowly becoming calmer and more settled. With this understanding my thoughts began to shift, and I started to think about my interaction with Ed in terms of data gathering. It was clear to me as his finger moved across the table and he called out the names of local landmarks that he could remember, with accuracy, the way back to the farm and its surroundings. In an effort to support his ability to express himself and communicate, I gave him a piece of paper and asked him to draw a map so that I could understand better:  He took the paper and pen and began to draw. He started with drawing the highway across the page, then the river, then positioned the farm and the house. He quickly put in N, S, E, and W and showed me (Ed, field notes, October 24).   As Ed worked on drawing his map, I became increasingly focused on gathering research data. I had moved away from gathering the kind of data that forms a clinical assessment. Instead, I was engaged in a go-along conversation where I was open to following his lead in discovering unfolding data. As he worked on drawing the barn and house, he told me he needed to get home to do the milking: I ask who lives there. He tells me he is living there with his parents. Then he stops drawing and tells me his brother doesn’t live there. “He goes back and forth, you know, he needs his privacy.” It’s as if he has just shared something private within the family 123  without spelling it out clearly. I nod. “But he always comes to do the milking.” He looks at me. I get the feeling that there is some family secret that has just been shared between us. (Ed, field notes, October 24) This impromptu opportunity for data gathering with Ed yielded rich data. At this point in the study, my concurrent data analysis had raised questions regarding the ways in which these residents living with advanced dementia experience temporal shifts. It was from within this analytic framing that I began to recognize and question my need to assess the truth and reality within these time shifts: Again, I catch myself wondering about the truth of his current reality. I want to corroborate it. Why is that? The map he draws does have some correct landmarks. Some I don’t know too. Do I want to be sure of the truth of his truth? Would it be alright for him to just have the reality that he has even if it wasn’t rooted in a greater historical truth? (Ed, analytic memo, October 24)    I sat with Ed for about an hour, drinking coffee and talking about his early life using his creation of the map as a vehicle. For much of this time I was actively gathering research data, reflecting on his ability to shift between times and places, thinking about how his past was expressed in his present. Ed had forgotten about his need to catch the bus as our go-along conversation moved to focus on fishing and the fish that was on the menu for dinner that night. I was no longer in my nursing role; I was fully engaged as a researcher.  In analysing our interaction, I understood myself to have shifted back and forth between nurse and researcher at multiple points. Our interaction ended when I took his photo and he gave 124  me his signed map. At this point, I felt the pull of my nurse role when I asked if I could take a picture of him with his map. He looked embarrassed at first, then asked me to put the date on it: I put the month and day. I ask him if he knows the year. He watches closely as I write 2017 and says “the 17th”.  I tell him he should sign it. Ed asks if he should print or write. I ask him to write his name. Again, I see the concentration as he carefully writes his name above the date. (Ed, field notes, October 24) My field notes are reminiscent of the many times I have assessed the orientation of people living with dementia through asking questions regarding person, place and time. I had slid into an assessment of Ed’s cognition as I assessed his ability to retrieve the date and write his name. At the same time, I was really excited by the data I had gathered over the past hour, in particular his drawing of the map to the farm. I was delighted when he offered me the map, anticipating how the map and photos would add to my understanding of his narrative of his life on the farm, and I had shifted back into my researcher role as I took a photo of the map followed by a photo of him posing with the map (see Figure 1 and Figure 2 following). While our interaction ended with my sense of excitement with respect to the data I had gathered, analysis of that data clearly reflected my engagement as both clinician and researcher at different points during our interaction. During most of this interaction I was in my researcher role, however my nursing-essence was never far below the surface as the final lines of my field notes indicate: “I thank him and he smiles again. He is calm, regular skin colouring. He smiles, no longer a furrowed brow” (Ed, field notes, October 24). The field notes and analytic memos that outline and explore my interaction with Ed in this case study, highlight the ways in which I responded in the moment to his needs and responses by shifting between my roles as nurse and researcher. Initially, assuming a clinical role I assessed and intervened with goals of addressing Ed’s distress and anxiety. As he 125  became more settled, I shifted to my researcher’s role as I began to identify and analyse the data that was being constructed within our interaction. I include this case study to highlight the complementary ways that these roles supported the study.   Figure 5.1:  Ed Drawing His Map              126  Figure 5.2:  Ed’s Map to the Farm         127  5.6.2 Case study two: together for lunch. Case study two also involves Ed and examines my shifting roles. Unlike case study one, during this interaction the shifts were not smooth. Instead, I experienced tension and resultant indecision regarding my actions and was left with a lingering sense of disquiet.  Several weeks following the events explored in case study one, I found myself pulled between my researcher and nurse roles as I once again engaged with Ed during a time when he was experiencing anxiety and distress. I began the interaction in my role as researcher when I entered the dining-room, intending to conduct a participant observation session with three resident participants while they ate lunch. I began by making a broad environmental scan of the room and its occupants before focusing on the individual resident participants. Ed was sitting at the end of a long table, and Edith was sitting at the other end of the same table where an RCA was beginning to help her eat her meal. In my initial assessment of Ed, I saw that he was visibly upset: His hair is tousled. It looks like he is due for a haircut soon. His glasses are low on his nose so that he looks at me over the glasses top. The glasses are crooked too. I wonder whether he has fallen and twisted the glasses as a result. I speak to him and as his eyes meet mine, I realize quickly that he is agitated. (Ed, field notes, January 16) His distress was exacerbated by the arrival of his lunch tray as he struggled to make sense  of what he has just been given: He lifts the lid and puts it down a couple of times as if he needs to remind himself of what is there. He pushes the tray away and brings it back in towards himself. I speak to him carefully. I want him to find me familiar but instead he is concerned that he doesn’t know me. He doesn’t know why I am there and why I’m talking to him. All the while he 128  is moving things around on his tray, taking the lids off his soup cup and teacup. (Ed, field notes, January 16) I decided to move down the table to sit across from Edith. I wanted to give Ed more physical space and be able to assess his responses before engaging with him. I decided to focus my observations on Edith and Mary who were also both in the dining-room; I didn’t want to further trigger Ed by focusing my observations on him. Despite my intent to continue conducting a participant observation session, I began to shift from my researcher role to my clinician role. I stopped recording, and put my notebook and pen away, and began assessing Ed’s escalating agitation as he began eating quickly and noisily between grunting noises and loud sighs. As I prepared to intervene with the goal of helping him to feel more comfortable and reassured, the daughter of another resident approached Ed. She spoke to him by name and laughingly refused to tell him her name. Clearly, she did not recognize how distressed he was:  He throws the tray lid on the table and swears saying he is confused. She tries to back- track telling him her name, but he isn’t interested. He looks away and tries to move his chair away from the table. He is trying to get away. She sees he is upset and moves away looking a bit apologetic. I debate whether to intervene. (Ed, field notes, January 16) Throughout this interaction I felt conflicted as I debated whether to intervene or return to my participant observation session. Although I had engaged in a clinical assessment of his behaviours, responses, and possible triggers, I did not intervene. Perhaps it was the introduction of the visitor, but I was less sure of how, and whether to intervene. My field notes and memoing point to my focus on assessing and interpreting Ed’s behaviours: Ed is agitated, frustrated with an element of anger and unpredictability. He is moving a lot as a way to express his agitation. His arms and hands are pushing things around on the 129  table. It is his way of telling the world that something is distressing him. Familiar, everyday things are not clear to him now. (Ed, analytic memo, 16 January) My focus on assessing and interpreting his behaviours was guided by both my nursing and research goals. Understanding his experience in that moment guided my decisions regarding intervention, and at the same time provided a window into a deeper level of understanding of his lived experience of dementia.  As I debated whether or not to intervene, Ed continued to engage angrily with the visitor and soon after left the dining-room. I watched him leave and noted that he was, in fact, heading down the correct hallway:  The interaction was clearly too much for him to deal with and he had to leave. He headed down the hall towards the room that he doesn’t remember he lives in and doesn’t remember how to get to, but in that very familiar instinctual way he heads to his place. (Ed, analytic memo, 16 January) I watched closely because it was important for me to know that he was headed in the correct direction to find his room.  I continued to debate whether or not to intervene as I watched Ed leave the dining-room; this debate reflecting the role tension I was experiencing. In the end, I decided to carry on conducting a participant observation session with the other two participants. I felt guilty for not attempting to intervene, and somewhat reluctant as I shifted back to my researcher role. I was unsettled as I watched Ed wheel out of the dining-room and head down the hall. The RCA who was helping Edith attempted to reassure me by telling me that he was deteriorating, and his dementia was getting worse. I didn’t feel reassured. Instead, I had a sense of having missed an opportunity to help; I had missed an opportunity to provide care. Ed’s behaviours had been a cry 130  for help that had gone unheeded. I found it hard to focus on gathering data on the other participants and soon ended my participant observation session.  5.7 Complementary Pathways My experiences during these two case studies were very different. During my interactions with Ed in case study one, I shifted relatively smoothly between my roles of nurse and researcher. These shifts occurred without significant inner debate or questioning of my positioning. In contrast, during the events described in case study two, I felt a strong pull to shift from my researcher to nurse role but resisted. Instead, I maintained my position as a researcher, and experienced a palpable sense of guilt and disquiet in watching Ed leave the dining-room; I had observed his anxiety and stress increase but had not intervened. I had heard his call but did not respond. My discomfort speaks to the integral nature of my nursing identity, and my inability to bracket off my nursing-essence. In this chapter, I have explored aspects of both my nursing and researcher roles. Upon reflection, I understand how these roles are complementary and integrated, rather than competing and mutually exclusive. As demonstrated in the above two case studies, while I identified more strongly with one role at certain points, this was not experienced to the exclusion of the other role. I was always aware of both my nursing and researcher lenses. In taking a reflexive stance during data gathering and analysis, I queried what could be learned from unpacking my nurse-researcher role. I argue that both these roles exist on a single continuum that I moved along throughout the study. Thus, rather than be wary or apologetic for the nursing-essence that I brought to my dissertation research, I look to the ways in which being a nurse-researcher supported my ability to engage with participants, particularly the resident participants, ultimately 131  supporting my ability to gather a rich corpus of data. I believe that being a nurse-researcher situated me in a place of understanding and way of being that both positioned and facilitated my data gathering and analysis.  My nursing experiences were central to building a foundation for rapport even during difficult situations such as described in the above case studies. As a nurse-researcher I had both comfort and access in the setting, could interpret the environment, and acquire information from the staff (Jacoby, 2017). Recognizing the prominent impact my nursing role would bring, I was apprehensive during my initial field experiences. I did not want to rely too heavily on my nursing lens, and consequently compromise my role as a researcher. However, I soon realized that my nursing and research lenses provided complementary reflections, and ultimately both lenses and skill sets guided my study. My researcher lens highlighted the overall direction and focus of the study through aligning my research questions, methods, and assumptions; my nursing lens facilitated my interpretation of participant assent and dissent and supported my relational rapport with participants. As a result, I recognized and experienced a blending and integration of my roles during the study. As a health care professional conducting applied research in a health care setting where some of the participants were also residents, it was impossible for me to conduct research that bracketed my nursing background. Ultimately, I made my way forward in the study through negotiating both roles, navigating between my related knowledge, expertise, and experiences. 5.8 Summary In chapter five I interrogated the underpinnings of both my nursing and researcher roles and explored the advantages and challenges associated with each role. The two case studies 132  examined how these roles influenced and impacted my decisions in the moment in the field. My nursing knowledge and expertise, and my familiarity and acceptance in the setting played pivotal roles in supporting my research. The thread of my nursing-essence was apparent throughout the study and prompted reflection related to my roles and identities as both researcher and nurse. This reflection was both spontaneous and intentional, undertaken in the moment in the field and then later developed during data analysis. Ultimately, I understood both roles as complementary and integrated. I believe it was through this integrated nurse-researcher role that I was able to gather a rich and diverse data corpus that inspired the analysis discussed in the following two findings chapters. Chapter six examines the data associated with the resident participants, interrogating participation observation and go-along conversation data in understanding their experiences of engagement in meaningful activities and relationships. Chapter seven expands on these findings through examining the understandings of the staff and family member participants.  133  Chapter 6: Living with Advanced Dementia: Experiences of Meaning Does anybody really know what time it is? Does anybody really care? - Robert Lamm (1969, Chicago Song Lyrics) 6.1 Introduction  My broad aim with this study is to illuminate and better understand the ways that residents living with advanced dementia in a long-term care home experience meaningful engagement. To that end, family and staff member participants provided important insights through interviews; however, in chapter six, my analysis is centred primarily on the data provided by the resident participants themselves. This data was gathered through participant observations and go-along conversations that were designed to privilege the residents’ voices, accessing their subjective perspectives of the experience of living with dementia. Thus, as I gathered their data I both looked and listened closely, to understand their experiences of meaningful engagement as they participated in activities and interactions with others.  In an effort to provide a layer of context, I begin chapter six with a brief introduction to each of the five resident participants who are at the heart of this study, as it is their experiences that underpin the research questions driving this study. For the remainder of the chapter I examine the data associated with my observations of the ways that the five resident participants expressed and experienced meaningful engagement. Three aspects of understanding meaningful engagement emerged from this analysis highlighting the importance of the quiet mundane everyday times, social connections, and activities that draw on enduring abilities.  I begin this discussion considering the experiences of meaningful engagement, often subtle, that emerged 134  during the unstructured activities and informal social interactions of everyday. Next, I examine the participants’ experiences of meaningful engagement through social connections paying close attention to their associated embodied, emotional, musical, and humorous expressions. Finally, I explore the ways in which the participants drew on their enduring abilities and exhibited sophisticated behaviours as they engaged in meaningful activities and interactions. These findings are explored and grouped in terms of three broad themes: Meaningful engagement in the mundane of everyday; Meaningful engagement in social connections; and Meaningful engagement through enduring abilities and sophisticated behaviours.  6.2 A Brief Introduction to the Resident Participants The following is a brief introduction to each of the five resident participants in the study. All of the resident participants were assessed as having complex care needs and required significant care assistance from the staff. Each of these individuals demonstrated evidence of advanced dementia through their cognitive and functional losses; all of the residents, with the exception of Anna, had a purple dot status, alerting care providers that the resident had a history of violent behaviour. The following descriptions highlight brief details of both their past, and present lived experiences during the time that the data gathering for this study took place.  6.2.1 An Introduction to Ed. Ed was an 84-year-old man. Born locally and adopted by his grandparents, Ed grew up on a dairy farm just a few kilometres from the long-term care home at the centre of this study. During his adult years he lived in the United States, where his two daughters and a grandson live. He has lived at the long-term care home for the past four years and his nephew is his designated substitute decision-maker. His nephew typically visited him 135  several times a week and their conversations usually centred on the past when Ed was living on the farm. Figure 6.1:  An Introduction to Ed  Ed required assistance for all of his personal care7 needs, however he was able to self-propel his wheelchair to mobilize within the setting and had minimal sensory deficits. His nephew described Ed as having been a “social animal”, observing that he continued to engage socially in the activities provided in the care home. Staff members described Ed as “charming”; stating that “if there is a party night here, he is the party man”. Unfortunately, staff members also noted that Ed was becoming increasingly confused, and that he was experiencing episodes of anxiety and distress more frequently. Increasingly, in the late afternoon Ed would attempt to  7 Personal care needs refer to washing, dressing, grooming, transferring, nutritional and elimination needs. 136  leave the building to return to the farm, at times becoming verbally and physically aggressive when staff attempted to redirect him.       6.2.2 An Introduction to Alice. Alice was a 95-year-old woman. She had moved from the prairies with her husband several years ago to be closer to her daughter. Alice cared for her husband along with her daughter until his death not long before she moved into the long-term care home five years ago. Alice had four children and worked as a bank teller after her children were grown. Her daughter described her as a very “organized and particular” person, stating that “she is very germ cautious [and] conscientious about cleanliness”. Her daughter described growing up in a musical family where they sang and harmonized together while they were growing up. Alice still played the piano by ear and participated in many of the music therapy programmes. Her daughter, who is her designated substitute decision-maker, had a very close and caring relationship with Alice. She visited each day at noon, tucking her mother into bed for a nap after lunch. Figure 6.2:   An Introduction to Alice  137  Alice required assistance for all of her personal care needs but could self-propel in her wheelchair within the care setting. She had significant hearing loss which made conversations challenging for her. Her daughter described a decline in her memory in recent months, and at times, Alice struggled to recognize her. Despite her memory loss, the rehabilitation staff noted that recently Alice had been more willingly to participate in some of the activity programming.  6.2.3 An Introduction to Mary8. Mary was a 96-year-old woman. She emigrated to Canada from England after the war to marry a Canadian soldier she had met in a bomb shelter in London. She raised three sons and has been widowed for 25 years. Although she didn’t work outside of her home, Mary was an active volunteer at the local Public Health baby clinic and her church. She was an avid gardener and loved reading as a younger woman; she continued to be interested in both activities while living in long-term care. She has one son and grandchildren who live locally and who visited regularly.  Mary had been living the long-term care home for two years and required assistance with all of her personal care needs. She was unable to self-propel in her wheelchair and thus dependent on others in order to mobilize within the setting. She had a significant hearing deficit which frustrated her and impaired her ability to hold conversations. Mary required significant encouragement to participate in activities; often she chose to eat in her room rather than the dining-room. Staff described how important it was to consider their approach to care with Mary, observing it was important not to rush her, or seem impatient.  6.2.4 An Introduction to Edith. Edith was a 95-year-old woman who emigrated from the Netherlands in the early 1950s with her husband and first child. She did not work outside of  8 I did not take photos or video-recordings of Mary. At times, during data gathering she appeared suspicious; she was the only participant who expressed dissent when I approached her for a go-along conversation. This occurred on only one occasion. 138  her home; however, she did a lot of volunteering within her community visiting seniors in nursing homes and psychiatric patients in an in-patient unit. She was also very involved with her church and enjoyed discussing scripture and theology.  Her daughter was her designated substitute decision-maker and visited Edith most weekends. Figure 6.3:  An Introduction to Edith  Edith had been living in the long-term care home for over 10 years. She required assistance with all of her personal care needs and was dependent on others to help her to eat and to push her wheelchair. Throughout her life Edith had enjoyed being physically active. In her early years living in the care home she would tell the staff stories about when she would go walking and cycling in the Netherlands. When this study was undertaken, she had very limited vision and was severely hearing impaired. Despite her significant communication and physical challenges, she participated in multiple programmes within the care home, including the intergenerational dance programme. She appeared to enjoy most activities and social interactions 139  but recently had been experiencing agitation late in the afternoon becoming difficult to comfort and settle.  6.2.5 An Introduction to Anna. Anna was an 87-year-old woman who moved to Canada from Germany. She had one son and divorced when her son was 14. She worked as an accountant in Germany before emigrating to Canada with her son, after he had married. Once in Canada she worked in a garden nursery; her son described how talented she was at making flower baskets. She lived in her son and daughter-in-law’s home and was very close to her grand daughter, looking after her when she was little, and her parents were at work.   Figure 6.4:  An Introduction to Anna  140  Anna moved into the care home eight months ago. She had had several strokes and her family had managed her care needs at home until her recent admission to the care home. Anna required significant assistance with all of her personal care needs including eating her meals. Her first language was German, and communication was difficult because of the language barrier and the residual effects of the stroke. Anna had a specialized reclining wheelchair and could tolerate sitting up for only a few hours at a time due to back pain. However, recently her pain medications had been titrated and staff noted that she was more alert and engaged. Following this, she began to participate in the intergenerational dance programme; this was the only activity programme that she participated in. 6.3 Understanding the Meaning in Engagement I approached my data gathering and analysis with the underlying assumption that meaningful engagement plays a central role in supporting the well-being and quality of life of people living with dementia in long-term care. However, I also understood and anticipated that each resident’s experiences of meaningful engagement would be unique and individual. This central and on-going role of meaning in the human experience was central to Viktor Frankl’s (1959/2006) poignant essays following his experiences of surviving the Nazi concentration camps of the last century. His writing points to our enduring quest for meaning despite the desperation of living in extreme dire and diminished circumstances. I note Frankl’s writings here, not in comparison with the experiences of living with dementia, but to underline the innate and enduring human search for meaning despite substantive and systemic losses.  I entered the field with this understanding, while also acknowledging that it would be challenging to recognize and interpret meaning-making for my residents living with the losses 141  associated with advanced dementia. Drawing on my conceptual framework, I anticipated that their, meaning-making would best be understood in embodied ways through their movements, gestures, and expressions. I also anticipated their meaning-making would be communicated in relational ways, understanding their personal identity and personhood to be constituted through mutual recognition in relationships with other human beings. Subsequently, I applied embodied and relational lens as I actively looked for times when the residents, despite the extent of their dementia-related losses, appeared to be meaningfully engaged in activities and interactions with others.  During my participant observations I was conscientious in my attempts to observe evidence of the residents’ engagement unhindered by presumptions; I attempted to neither assume nor presume what each resident would understand as meaningful. Further, during go-along conversations I was cognizant that in my direct interactions with the residents I was involved in co-creating their experiences. While I attempted to neither assume nor presume their experiences of meaning, I supported positive social and emotional engagement through our interactions. Recognizing the subjective nature of meaning, I understood meaningful engagement as the residents’ engagement or occupation with an external stimulus (Cohen-Mansfield, et al., 2009) of personal importance or significance (Phinney, et al., 2007). Thus, my participant observations and interactions were overlaid by my internal questions intended to bring the residents’ experiences of meaningful engagement into the foreground. When were they engaged in meaningful activities? What made their social interactions meaningful? What did meaningful engagement look like for these individuals? How did they express this? These questions also guided and underpinned my analysis as I viewed and re-viewed video data and read and re-read fieldnotes and memos.  142  I engaged in participant observation during both structured and unstructured activities, in the dining-room/activity room, residents’ bedrooms and the hallways. At times there were obvious and overt examples of meaningful engagement during these participant observation sessions. For example, Edith connected easily and positively with the children during the intergenerational dance programme. Although she rarely initiated social interactions, when she saw the girls coming close to her, she would “spontaneously open her arms and reach her hands out to hold their hands” (Edith, fieldnotes, 31 January). I came to expect this response each time she was with the children. Despite her visual and hearing losses, when the children were near, Edith would turn towards them, focus intently, then reach out to touch, hug, and most often kiss them. Figure 6.5:  Edith — Intergenerational Engagement 143   Similarly, I perceived when Ed was meaningfully engaged during music therapy activities by his smiles and laughter as he carefully watched the MTfor direction. When classical musicians came to the care home to perform, his level of engagement was heightened and more overt:  I recognize his movements that are motivated by music. He lifts his arms in unison with palms upturned . . ..  He is communicating with the music anticipating and/or responding to its tempo, beat, and loudness. He is truly oblivious to others in the room. At the end of the performance he claps once again with enthusiasm. (Ed, fieldnotes, 8 November). Thus, I gathered data with an understanding that the resident participants both could and would be variously engaged in activities and interactions that I perceived was meaningful to them. My challenge was to recognize the residents’ enduring abilities despite their losses, and to interpret when something or someone was of personal significance or importance to them and thus meaningful. Within an environment of sameness, the most obvious examples stood out while, as described following, the smaller and more subtle examples required more detailed and acute observations. 6.4 Meaningful Engagement in the Mundane of Everyday  6.4.1 Situated amidst the sameness. I observed the days in the long-term care home to be highly routinized and defined by the sameness of both physical places and social spaces. As I became more comfortable with my data gathering methods and more accustomed to the field, I was struck by the elements of sameness that constructed the lived experiences of the resident participants. They lived each day primarily within two rooms: their bedrooms and the dining-144  room which also doubled as an activity room. Their routinized care and recreation schedules saw the residents positioned in the same places and same spaces at the same times each day. Thus, in looking for their expressions related to, and experiences of meaningful engagement, I waited and watched for evidence of subtle or seemingly small events and occurrences that could punctuate the mundane of everyday.  While there were obvious and overt experiences of meaningful engagement that occurred, the quiet routine moments that defined the majority of the resident participants’ everyday lived experiences were also a rich source of data illuminating their subjective experiences of meaning.  6.4.2 Waiting and watching. During unstructured times, the residents appeared to be passively engaged (e.g. watching but not interacting) or not appearing to be engaged in any activity or occupation (e.g. sitting quietly with eyes closed or staring into space). This was particularly evident when they were in the dining-room between meals and activities. Sitting quietly in their wheelchairs, at a glance they appeared to be simply sitting and staring. I questioned whether there were opportunities for the residents to experience meaning during these times of perceived passive engagement. People living with advanced dementia have diminished abilities to self-initiate opportunities for meaningful engagement, be it participating in an activity or social interaction, and consequently they rely on others to meet these needs. This was the reality for the residents in my study. This meant that during the times between structured activities (i.e. care, meals, recreation and rehabilitation programming) the residents typically appeared to be unoccupied or passive. Subsequently, I interrogated these periods of passivity, looking for expressions of agency and experiences of meaningful engagement. And, as I waited and watched, I began to see 145  patterns in the small and seemingly inconsequential actions and expressions within the sameness of those waiting times.  I began to understand underlying narratives within the waiting. Ed was not simply sitting and staring; instead, he was agentic in his watching. I understood him to be taking stock and assessing his environment. I observed Ed as he scanned the room, pausing to look at each person seated at the tables, carefully moving his gaze from face to face, looking longer at unfamiliar faces: Ed spends a lot of time watching the others in the environment. He notes the other residents sitting at the tables for meals and often notes the family members that might be there. This is something Alice does as well. (Ed, analytic memo, 16 August).  Upon entering the dining-room, Ed typically moved around the room before eventually coming to what he was his place. He paid attention to others, noting or recognizing when they were sharing his space with a smile or a small motion of his head. He routinely picked up a newspaper as he settled into his place at the table, and carefully turned the pages as he waited. When he was finished going through the paper, he spent considerable care in slowly refolding the paper attempting to match the original fold patterns. Similarly, he would carefully smooth his clothing protector9, smooth his hair, and adjust his glasses as he waited. These small actions were repeated daily as he waited for each meal; they seemed to set his stage. I perceived these small actions to be significant expressions of the meaning that his appearance and his everyday routines continued to hold for him. He was effectively creating and maintaining his own personal routines within the larger established institutional routines.  9 Staff placed a blue terry-cloth clothing protector on or beside each resident prior to each meal. 146  Most of the residents spent long periods of time in the dining-room after engaging in mid-morning activities while they waited for lunch to be served. I observed this quiet time to be punctuated by many small preparatory actions. As residents entered the dining-room to wait, those already seated at the tables gave subtle glances and slight turns of their heads as they took note of who was joining them. Over the course of my participant observations, I recognized that tablemates largely remained the same; this was true for participants Ed and Alice. While neither of these individuals could articulate for me where they lived or where their bedrooms were, both residents were clearly familiar with their table places in the dining-room, and who typically sat with them at their tables. Ed had the same tablemates during my field work, and he routinely looked to confirm that they were there when he arrived at the table. In contrast, Alice always sat alone at her table, and she went to great lengths to ensure that her table remained private: She approaches the man in her way and pushes the back wheels of his chair to try to move him out of the way.  He tries to put his feet on the floor to remain where he is. Alice is determined. She grasps the handle at the back of his chair and pushes him forward. Then she uses her foot again to push him until she is able to turn her wheelchair into her usual seating spot. (Alice, fieldnotes, 19 September) Thus, while some residents were sleeping or sitting quietly with eyes shut while waiting for meals, others were clearly preparing and setting themselves up for their meals in what at first seemed to be insignificant ways. However, over time I perceived their small looks, gestures, and movements to be significant. These were meaningful self-initiated actions demonstrating their purpose and agency as they prepared themselves and their spaces.   6.4.3 Small observations with bigger meanings. An embodied lens was central to gathering data, through the small movements, gestures, and gazes that illuminated meaningful 147  engagement. For example, Anna had very minimal verbal language; subsequently, I relied heavily on embodied understandings in order to interpret her experience of meaning during the intergenerational dance programme: There is a lot of movement and music. Anna looks across it all and it is hard to say whether she is looking at anything particular. She is breathing easily.  She looks, in effect, quite neutral. The children try to interact with her but tend to go to the residents who they know they will get the biggest response from. Anna doesn’t give much in the way of a response. She doesn’t reach out for their hands; she doesn’t say anything to them as they skip around in a circle past her. Over time I see that she is shifting her gaze and head a bit to follow some action. (Anna, fieldnotes, 13 December) Over the course of several weeks of observing Anna as she participated in the intergenerational dance programme, I noticed a significant difference. She gradually began to appear more comfortable, and I saw indications that she was actively engaging with the girls:  Anna is able to hold her gaze on the activities much longer. I can tell that she is able to track the girls as they move around the circle. She moves her head and follows the movements of the girls. (Anna, analytic memo, 28 February) Anna was increasingly aware of and paying more attention to what the children were doing during the dance programme. I began to recognize when she was enjoying experiences and when she was feeling overwhelmed, by her small gestures and the slight changes in her facial expressions. For example, when the children crowded around to greet her, Anna would move her hands away as they reached for her and her facial expression would become stressed: Anna likes to have the girls close but not too close. Her expression is a good monitor for her level of comfort with the physical closeness of the girls. She relaxes when they are 148  close but not too close. One child is OK but she seems stressed when several of the girls gather around her in a group. (Anna, analytic memo, 28 February) Experiences of meaningful engagement were often fleeting and could easily be missed if  my observations were focused on another resident or another part of the room. Consequently, with several of the participants in the weekly hymn sing sessions, I would shift my attention sequentially between the participants, trying not to focus too long on any one resident. During one of these sessions, the husband of another resident had joined in the singing. Unsure of the words he looked over at the hymn book on Alice’s lap and began speaking to her of the lyrics of hope and glory. They began to sing together: He sings as if he is singing to Alice. This appears to be a very special shared evangelical moment. The lyrics speak of going to heaven and Alice is absolutely engaged looking up at his face smiling. Two of the residents sitting near her clap for him and Alice looks delighted. (Alice, fieldnotes, 3 October) For a brief moment I could see that Alice was very deeply engaged. I sensed a convergence of her faith, her love of music, and the complimentary attentions of both the visitor and the other residents all coming together to create a highly meaningful experience. However, as soon as the hymn ended, the visitor left, and Alice moved back to her table. My sense of her meaningful engagement vanished; there was no indication that Alice had just a moment earlier been highly engaged as she now sat quietly, running her hands over her table and repositioning her cup. Had I been focused on observing one of the other residents or seated on the other side of the room I would have missed this experience.   6.4.4 Seeing, hearing, and feeling the data. It is important for me to highlight the extent to which I influenced and co-constructed the data and findings. During participant observation 149  sessions I also waited and watched, sharing the perspective of the residents as they waited and watched. As noted, opportunities for engaging in meaningful experiences could occur unpredictably and last only briefly, necessitating me to remain actively engaged in my participant observations and patient during long quiet periods. In contrast, go-along conversations provided very different data gathering experiences. At these times I was actively engaged in co-constructing the data along with the resident participants. Where participant observations privileged my ability to see experiences of meaningful engagement, go-along conversations privileged my ability to hear them. The go-along conversations were centred around participating in conversations and activities where I concentrated on following the lead of the resident participants. I took my cues from their words, expressions, and gestures in co-creating the flow and content of our interactions aware that neither of us knew where going along would lead.  I had a sense that Mary was particularly delighted by these unanticipated one-on-one encounters. Thus, I understood that these interactions had a level of meaning for the participants. These were one-on-one opportunities for social connection where the residents took the lead in determining the content, context, and pace; their meaningful engagement was evidenced by their smiles, laughter, and touches.  In seeking subjective understanding that could not be gleaned through traditional interviews with the residents, I relied heavily on sensory and visual data gathering methods. This allowed for gathering rich data within and despite the sameness of the environment and slowness of actions and events where my sensory perceptions were central in co-constructing the data and findings outlined in the following sections. Underpinned by Pink’s (2015) sensory approach to ethnography and Hughes’ (2014b) call for assuming an aesthetic approach to people living with 150  dementia, as I observed and connected with the participants, I was conscious of what I sensed and felt.  6.5 Meaningful Engagement in Social Connections As described in the following sections, I observed rich examples of meaningful engagement during data gathering that highlighted the central role of social connections. Much of my data gathering took place when the residents were positioned among others, with opportunities for engaging in social interactions during meals, structured activities, and during go-along conversations with me. Thus, I was well positioned to examine the nature of their everyday activities and interactions within social connections as I gathered data.  In seeking to understand these experiences, I neither measured nor monitored the number of times, nor length of times that the participants demonstrated particular behaviours or expressed particular emotions. I gathered data reflective of multiple instances and examples of the participants participating in a range of activities where social interactions were an integral factor. Embodied ways of communicating, particularly emotional expressions were observed to facilitate both initiating and maintaining social connections. Interestingly, I was surprised at how frequently participants drew on humour in forming social connections; I observed many examples of humour and playfulness during meaningful social engagement. Music was also found to underpin meaningful social connections. The long-term care home had a strong music therapy programme where residents interacted with each other and the MT as they sang and kept the rhythm together. Thus, the following discussion explores the ways that I understood embodiment, humour, and music to underpin the participants’ engagement in social connections. 151  6.5.1 Embodied expressions. All of the resident participants had sensory deficits that compounded their cognitive losses making communication, and by extension, social connections difficult. When words fail as dementia progresses, the movements, gestures, and expressions of the body provide a vehicle for communication. I understood embodied expressions as more than non-verbal ways of communicating the ideas and thoughts typically shared through spoken language; I also understood embodiment to communicate deeper underlying meanings, feelings and emotions. Thus, exploring the residents’ embodied ways of communicating was critical to my understanding of their social connections.  Consequently, I utilized embodiment as a central lens for observing the resident participants. Some examples of embodiment were subtle and found in the seemingly mundane experiences of everyday. As discussed above, during unstructured periods of waiting for meals or activities, the participants were often engaged in active observations of others where their gazes and facial expressions facilitated their ability to communicate and connect socially. For example, I came to understand Alice’s gaze as an antecedent to social connections: “she often looks at me across the dining room. When I’m observed, she virtually wills me to come over because she wants to talk to me” (Alice, analytic memo, 29 September). Similarly, Anna used her gaze and facial expressions to communicate and form social connections: The girls have moved around to say good morning to her. She is looking at them. Her nose a bit wrinkled but she is smiling. One of the girls touches her hand. Two of the girls stand close to her. They repeat gut morgen, trying to say good morning in German. Anna is smiling and watching. She doesn’t move her hands or arms but is following with her gaze and smiling. (Anna, video 1iii memo). 152  In contrast, Ed demonstrated embodied communication more overtly; he often became very physically active when there were opportunities to interact with others. For example, when he became aware of others entering his immediate space, he typically smiled and waved. This was repeated daily regardless of the responses returned: “he does initiate some connection with others, but the other residents don’t always respond – it doesn’t seem to matter” (Ed, analytic memo, 19 September).  Ed’s embodied communication frequently included touch, as he established social connections through patting the arms of people seated beside him. His physical pats were accompanied by a smiling expression, communicating a warm invitation for friendly social connection. During our go-along conversations, I was the recipient of many pats on the arm that would frequently progress to holding hands. Seated in his wheelchair, Ed’s arms and hands were often busy during social interactions. He engaged in a range of movements and gestures that included clapping, waving, touching, patting, and holding hands. Holding hands created a physical connection that communicated a strong social connection and level of comfort. Typically, Ed would hold my hand if we were seated beside each other during a recreation activity. At these times, his touch was light and holding hands brief as he was also engaged in the activity where his hands might be needed for playing an instrument or throwing a ball. He would reach over to touch or hold my hand briefly as if to remind both of us that we were still connected, then let go to focus on participating in the activity.  However, holding hands was a different experience when Ed was distressed; in these instances, his touch communicated his anxiety and stress. For example, while experiencing a period of acute confusion during a delirium I observed Ed to be searching in vain for a wallet that no longer existed: 153  I go over to him. I’m aware that he is agitated and begin to talk to him with the goal of de-escalating his stress. I remind him that we know each other and let him hold my hand. His grip is tight, and he is looking at me trying desperately to know me. (Ed, fieldnotes, 17 January) I knew that Ed did not have a wallet, and as I observed and then interacted with him, I sensed his struggle to feel settled and safe. He believed that something was missing or not right in his world, and although I was familiar to him, he did not appear to recognize me. My initial response was to acknowledge his concern and then help him search; I tried to reassure him that we did, in fact, know each other. These actions helped to diffuse the moment; subsequently, Ed’s grip loosened as we both began to look for a wallet that had never been there. In the absence of words, Ed had successfully communicated his needs in embodied ways. I observed each of the resident participants to communicate and connect in unique embodied ways. Eye contact communicated a greeting and invitation to connect, touch was used to confirm social connections, and facial expressions underpinned and demonstrated affect. Where Ed’s broad smile and waving hands signaled his positive desire to interact, Anna’s frowns communicated her need for less interaction: “The girls are all standing around Anna’s wheelchair. She is frowning; her nose is wrinkled, and her eyes and eyebrows are frowning. It seems to be too much stimulation and confusion for her" (Anna, video 2ii memo). In both the above instances, what was communicated was clear; Ed’s waving hands and smiles typically drew like responses, and Anna’s frowns resulted in the children taking a step back. Social connections and understandings of people living with dementia are inherently and inevitably embodied. Thus, it follows that my understandings of the resident participants were both embodied and co-created. When Alice communicated her non-verbal invitations through 154  gaze and facial expressions, my return gaze communicated my willingness and interest back to her. Similarly, when Ed grasped my hand, he understood my embodied response as I turned to him and smiled, curling my fingers around his hand. My communication and resultant social connections with the residents were both facilitated and understood through our bodily interactions.  6.5.1.1 Emotional expressions. Hughes (2014b) called for an aesthetic perspective in supporting a broader, more humanistic way of viewing and engaging people living with dementia, where aesthetic and emotional responses reflect shared engagement. As described in the preceding section, the ability to communicate in embodied ways was critical to supporting the residents’ enduring abilities to engage socially. In this section I look more closely at examples of the residents’ emotional expressions as central to the embodied communication underpinning their social connections.  The ability to express emotions and feelings continues long into the progression of dementia symptoms and runs along a continuum that includes both positive expressions (e.g. happiness, joy) and negative expressions (e.g. anger, hostility) (Jones, Sung, & Moyle, 2015). And, while I did observe a full range of emotions to be expressed during data gathering, I focus here on those positive emotional expressions that have been associated with engaging in meaningful activities and social connections. In the examples below, I sensed that the emotional expressions demonstrated by the residents communicated more than positive affect and pleasure. Taking an aesthetic perspective, I understood their expressions of emotion to communicate a deeper communication of caring and sharing within their relationships. 155   Social interactions were particularly challenging for Anna. Her ability to communicate and connect was limited by both language and mobility deficits. She faced a language barrier with English as her second language and was fully dependent on others to ensure she was brought into spaces where there were opportunities to interact with others. Initially she demonstrated little involvement or engagement with others during the intergenerational dance classes: “Throughout the rest of the dance class Anna remains quiet and relatively motionless. Neutral is the descriptor that comes to mind” (Anna, fieldnotes, 6 December).  However, over time I recognized that she became increasingly observant of the children as they danced around her; and, these observations evidenced positive emotions: “She is more active in following the movements of the girls throughout the dance programme. This is the first time I see her smile. There is no doubt she looks happy this morning” (Anna, analytic memo, 17 January).  All the children were drawn to Anna as she became more interactive, however one of the girls appeared to be especially attached and attentive to her. Their relationship appeared to move beyond the broad enjoyment expressed by the other participants of the intergenerational dance programme. As I observed their embodied and emotional expressions it was apparent that they shared a deeper level of interest in and caring about each other. When partners were chosen, this girl always chose Anna. When the girls would gather to greet each resident at the beginning of class, this girl would wait and give Anna an extra hug before moving on to greet the next resident. After several weeks, I observed that not only did Anna recognized this one girl from within the group, but she responded to her with in a very caring and affectionate way: Today she kissed the girl on her cheek. There have been a lot of instances where the girls hug and are cheek to cheek. Today Anna responded in a very positive, loving way. It 156  seemed like a natural response. There appeared to be recognition between Anna and the one little girl who has partnered with her the most. (Anna, analytic memo, 28 February) While I observed the resident participants to express themselves emotionally in their social relationships with others, I also was aware of my own emotional responses during interactions with them. Towards the end of my fieldwork, I sensed that Alice was familiar with me, but she had remained aloof and I didn’t sense any strong emotional connection. Thus, I was surprised, and pleased when one afternoon she asked me to go with her to play Bingo. Clearly the players and caller were regulars, and I soon realized that I was an outsider. The players all had favourite cards and they all shared inside Bingo jokes, where they anticipated the punch lines and the caller’s comedy routine. I assumed that Alice needed me to help her play; I was wrong. This was a highly organized event where Alice’s hearing loss was accommodated, and she was quite clearly familiar with the routines. As I listened to the caller and carefully scanned her cards to ensure that she didn’t miss any numbers, I realized that not only were her cards correct, but she was also checking my cards. I could tell that she was really pleased that I was sitting with her. I sensed a strong connection between us as she sat with her hand on my arm throughout the entire game. Thus, we were both physically and emotionally connected as we checked each other’s cards: I felt her place her hand on my arm and she left it there for most of the game. I didn’t dare move because I didn’t want to disrupt the connection and I didn’t know where it would go. It was a symbol of our partnering. I felt emotional when the game was over. I realized that I had connected with her in a way that I never had before. I wasn’t directing or observing or trying to figure her out – I was just being with her. (Alice, analytic memo, 16 January) 157   I sensed that Alice had communicated more than pleasure as we played; I sensed something a little deeper than that. In that moment, I felt that we each had experienced a heightened sense of knowing and caring about each other. And for that moment, as I sensed the rich unique nature of this experience, I realized that I was co-creating the very social connection and embodied communication that I had been seeking to observe and understand in my participants for the past months. 6.5.2 Humorous expressions.  It was not lost on me that the Bingo players, all living with dementia, connected with each other through their shared understanding and enjoyment of Bingo jokes and banter. Over the course of my fieldwork, I observed a range of expressions of humour, and examples of playfulness among the residents. The literature points to the enduring ability to share humour and engage in playful experiences despite symptoms of advanced dementia (Hubbard, Downs, & Tester, 2003; Person & Hanssen, 2015; Post, 2013). For example, Götell and colleagues (2009) observed there to be a prevailing mood of fun during personal care sessions where care providers sang to, and with residents living with advanced dementia. During these care sessions the singing was punctuated with jokes and banter demonstrating the residents’ abilities to make and interpret humour, and to have fun well into their disease progression.  Humour is inherently social. It is a shared experience where play and jokes are communicated and interpreted through social connections. I observed expressions of humour to be communicated in embodied ways and underpinned by positive emotions. Jokes were told and pranks were played through exaggerated movements, comic facial expressions, and mock protestations of innocence. The result was a co-creation of shared understanding and fun expressed through smiles, laughter, and positive emotions. 158   Both Ed and Edith engaged in humour as a strategy for initiating and maintaining social connections. Ed participated in several structured activities which saw him seated beside other residents or staff. As the residents would assemble in the group, Ed would typically look to the person next to him and greet them with a loud “woot”; this would be followed by a round of laughter leaving a very pleased Ed smiling broadly. He was very physically and socially engaged when participating in group games. He laughed easily and often and responded positively to direction from the staff. Ed’s jokes demonstrated a level of complexity in their construction. For example, when raising his arms as part of an exercise, he looked to the staff member and volunteer, then laughingly said: “I give up”!  This was repeated each time he raised his arms until the staff member asked him whether he was making trouble, at which point he smiled widely. “He [was] pleased to be singled out in this way. He gives [another] woot” (Ed, fieldnotes, August 24). Ed sought attention through humour, where joking provided a positive way to connect socially. He usually aimed his jokes at the staff rather than the other residents; I think he sensed that the staff would interpret and respond to his humour where other residents might be less aware and responsive.  Edith expressed humour and a sense of playfulness. Similarly, her humour typically targeted the staff, the children in the intergenerational dance programme, and me. In fact, she surprised me with how interactive she was through play: I turn to see Edith looking at me and laughing. Her ribbon-stick is swirling and twirling on my arm and shoulder. I have to move my head back a bit as I laugh too. I twirl my ribbon-stick at Edith, and she laughs harder. The RT calls out “Edith! You are too funny”! This game continues between Edith and I as we both laugh and tickle each other with our ribbons whenever the other turns away. Edith doesn’t say anything, but she is 159  clearly intentional and really enjoying teasing me. I’m enjoying it too. I really can’t stop laughing and that of course, seems to egg her on. This encounter is unique to us, none of the other residents are playing with their ribbon-sticks in this way. (Edith, fieldnotes, October 12) In both the above examples, I sensed the significance that Ed and Edith placed on engaging in a shared understanding of humour and fun with others; these were meaningful social connections that they valued and enjoyed.    The power of humour to engage residents living with advanced dementia in long-term care underpins a recent arts-based intervention involving elder clowning10. Here elder clowns initiate interactions and improvise in response to the residents’ reactions. This intervention involves a significant element of performance as the clowns engage in slapstick with each other as the residents watch and respond (Kontos, et al., 2016). In contrast, the examples I explore here highlight the residents’ agency as they initiated and created interactions defined by fun and play. They were creating humour and play, not responding to a humorous performance.   Ed and Edith both used humour to communicate and connect with other residents through physical gestures, movements, and facial expressions. During a game of keep the balloon in the air, which included Ed and Edith, all of the participating residents performed exaggerated and comic movements in their wheelchairs in their efforts to keep the balloon, despite its unpredictable movements, aloft. There was a palpable mood of fun and feeling of happiness  10 Elder clowning programming involves individuals professionally trained in clowning, with additional education regarding dementia and dementia-care. They wear a “red-nose” as part of their costume, and aim to engage residents living in long-term care through improvisation, humour, empathy using expressive tools such as song, musical instruments, and dance (Kontos, et al., 2016). 160  communicated and shared as the residents laughed and cheered each other on, connecting in both physical and positive emotional ways.  I observed examples of other residents drawing on embodied ways of supporting social connections through humour and play. While other abilities were diminished, the ability persisted for some residents to both make others smile and laugh, and to enjoy a social experience as fun or funny. In examining the meaning within social connections, expressions of humour stood out for their spontaneity within a routine environment. The sights and sounds of laughter and play warmed up the environment as residents and staff shared in these experiences. Engaging in humorous social connections required the participants to demonstrate an openness and ability to respond in the moment, and then to play along drawing on creative interpretation in co-creating the trajectory of the experience of fun and play. The co-creation of shared understandings was essential as something was perceived as funny only because both parties understood it to be funny.  6.5.3. Musical expressions. Expressions of the residents’ moods, feelings and emotions were strong indicators of meaningful engagement during activities, and this was particularly evident during activities involving music. The care home employed a full-time Music Therapist and each of the resident participants participated in individually designed music therapy sessions. Consequently, music was often in the foreground or background of my observations and go-along conversations. During music therapy sessions I felt that both the residents and me had a heightened awareness of our moods and feeling. For example, Ed attended multiple music therapy sessions each week where he appeared to be highly engaged in meaningful ways. For example, during 161  hymn sing, I observed how carefully he followed the lead of the MT, singing quietly through the less familiar verses and then with much more confidence and volume during the chorus. Similarly, during the drumming group I observed Ed to be highly engaged as he concentrated to follow the rhythm, anticipate what was to come, and personalize the endings with improvised drum solos. Video data captured his focus as he coordinated his attention between the drums he was playing, and the directions provided by the MT. His smiles and nods at the others in attendance communicated his pleasure as he drummed, and his pride in his improvised solos.  Occasionally professional musicians came to the care home, and it was during one of these performances that I witnessed the strength and richness of Ed’s emotional connections both to and through music. I sat beside Ed as he listened to the classical pianist. His physical responses were very overt: His legs are moving, his hands are folded in his lap but moving too. He is tapping his fingers on the opposite hand in time to the music. At one point the music rises in a crescendo – he lifts his arms as the music rises and his hands hang in the air waiting for a climax . . . the music slides into the next stage and he lowers his hands and relaxes. “Beautiful” he says quietly. (Ed, fieldnotes, 4 October) I could sense that this was different from other musical experiences I had observed with Ed. I could feel how deeply he was engaged and how meaningful this experience was to him. My fieldnotes described him as listening with rapt attention. As I reflected on and analyzed this experience, I understood Ed to be interpreting the music as a conductor might, so engrossed that he seemed unaware of me beside him or anyone else.   At the completion of the performance, I had the sense that Ed was fully alive. He was especially bright and animated as he turned to me: “That was wonderful don’t you think?” (Ed, 162  fieldnotes, 4 October). This interaction was unusual both for the fact that Ed had initiated our conversation, and because he was asking questions of me. Both initiating conversation and formulating questions were examples of higher-level communication skills when compared with Ed’s more typically short responses to my comments and questions. I sensed that I had just been witness to something very special having observed and sensed his genuine and very deep sense of pleasure and joy. It was rich evidence of the depth of his enduring ability to feel and appreciate beauty, and I carried this experience with me for the duration of my fieldwork with him.  Shared understandings reflected the residents’ meaningful engagement within social connections. In assuming an aesthetic approach, at times the meaning in social connections was virtually palpable, and I could sense the significance in the residents’ embodied, emotional, humorous, and musical ways of being in a social world. Meaningful engagement was seen, heard, and felt in shared glances, touches, laughter, and music; these expressions and experiences demonstrated agency and intentionality as the participants actively sought connection and participation drawing on their enduring social skills and abilities.  6.6 Meaningful Engagement Drawing on Enduring Abilities and Sophisticated Behaviours  The literature identifies a range of enduring abilities and skills that people living with advanced dementia draw on as they engage in social activities and relationships (Mayhew, Acton, Yauk, & Hopkins, 2001; Sabat & Gladstone, 2010; Ward, Vass, Aggarwal, Garfield, & Cybyk, 2008). As outlined in the following sections, the resident participants also demonstrated abilities, skills, and behaviours that reflected their unique personalities and characters, along with 163  referencing their past ways of being. These enduring abilities and behaviours evidenced a significant level of sophistication as the residents navigated situational challenges and complexity, while engaging in meaningful activities and social connections. Throughout data gathering I observed examples of the residents’ sophisticated and complex skills during activities that reflected their abilities to anticipate, improvise, sequence, and evaluate. My data also highlighted their enduring social skills as they expressed awareness of the feelings of others; motivation to help others; avoidance of embarrassment; creativity and self-expression; and intentionality.  Their enduring abilities, skills, and behaviours stood in stark contrast to their communicative, cognitive and functional deficits. At times easily passed over amidst the mundane of everyday, these enduring abilities underpinned the residents’ experiences and expressions of meaningful engagement.        6.6.1 Still able to do it. Typically, a lens focused on functional and cognitive loss has been assumed in evaluating the abilities and resultant needs of people living with advanced dementia in long-term care homes. Consequently, the focus has often fallen on what the care providers need to do to meet the residents’ needs i.e. what the care-providers do for them. In contrast, in considering the residents’ experiences of meaningful engagement, I focused on what the residents were still able to do.  Residents demonstrated enduring social skills reflective of the etiquette and norms typically inherent in social interactions and activities. These social skills were often part of a larger repertoire of enduring skills and behaviours that the participants drew on in navigating group recreation and rehabilitation activities. For example, Ed often relied on humour and playfulness to support his social connections; however, during Bocce he also demonstrated a set of complex skills related to “playing the game”.  164  Ed played Bocce regularly and was highly engaged as he interacted with the staff and other residents while concentrating on the actual plays of the game. He kept up a running commentary throughout the game as he commented on the shots of other players, calling out “beautiful shot, beautiful shot,” and showed his knowledge of Bocce jargon calling out “true blue” when a good shot was taken with a blue ball. Ed had fun playing the game, but he was also very focused on the play of the game itself. Although he couldn’t keep track of the score, he was very aware of when points were scored, and whether it was the blue or red team that had scored. When one of the balls was missing, it was Ed who noticed that another resident was holding two balls. Thus, while I observed him to be engaged socially, I also perceived that he was strategizing and engaged in the game itself: He leans forward and watches keenly. It reminds me of how he might have watched sports teams play. He watches all the throws. He watches the staff too. He watches how they distribute the balls between games and listens as they engage in casual conversation with the other residents too. He is strategizing. (Ed, fieldnotes, 29 September) As I observed Ed playing Bocce, I was impressed by his skills and abilities. He understood the flow of the game, anticipated his turn, and cued others when it was their turn. He knew that either the blue or red team would win and looked to the staff member who was keeping score after each shot for confirmation of which team was in the lead. He studied the position of the balls in play; I felt that he was strategizing where to place his shot based on where the other balls lay. It was clear from his comments and his play that he understood that in order to win he needed to place his ball closest to the center. His social skills were also evident as he gently reminded, encouraged, and playfully commiserated over errant shots with the other residents. Despite his advanced dementia, Ed was still able to follow the rules of the game and 165  play with others. “He seemed to have a natural ability and interest in the games and activities. The language, the movements and postures, were all reminiscent of earlier participation” (Ed, analytic memo, 29 September). Ed’s nephew had described Ed as a “social animal” noting that he had enjoyed participating in group activities where he could make others laugh, and that he had enjoyed watching sports on TV (Ed-FM, interview). In watching him play Bocce, I sensed that he was drawing on his skills and abilities from times past. Similarly, Alice demonstrated a range of abilities that evidenced expertise; this was particularly evident in observing her participation in the music therapy programming.  I knew from interviews with the staff and her daughter that she had engaged in musical experiences throughout her life, both singing and playing musical instruments. One morning I video-recorded Alice playing the piano. At first, she shook her head telling me she hadn’t played for a long time and that she didn’t think she could still play. But when I pushed her wheelchair up to the piano, she immediately laid her hands on the keyboard, and her fingers quietly felt the keys for a few minutes. I could tell her hands recognized the keyboard, and after a few minutes she began to play an old hymn. The photos which follow are stills created from the video-recording of this session. The photos and accompanying narrative interpretation highlight key moments during Alice’s performance which exemplified her enduring musical skills.       166  Figure 6.6: Alice — Beginning to Play   As Alice first sat at the piano with her hands resting on the keys, I could see that she was preparing herself for a performance. She shifted herself both towards and away from the piano until she found the right position. She then played a few notes, running her fingers up the keys to position her hands correctly as well. When her movements stopped, she signalled that she was ready by turning to look at me with a very purposeful expression as she waited. She had agreed to be video-recorded and now she was waiting for the audience to be ready; now she was anticipating beginning her performance.      167  Figure 6.7: Alice — Remembering How   As she began to play, Alice’s fingers found the keys only tentatively at first, and at times incorrectly. She remained very focused as she looked at her hands intently. She played slowly and it was difficult to hear a melody at first. I couldn’t tell whether she was playing something familiar to me or not. She was concentrating, recognizing and correcting her mistakes. As she continued, the tempo sped up and the melody emerged. Despite her shaky start Alice was remembering how to play the hymn.    168  Figure 6.8: Alice — Adding in the Pedals   As she continued to play, she remained very focused on piano. The number of mistakes and corrections began to decrease, and her hands moved with more confidence up and down the keyboard. About mid-way through playing the hymn she found and recognized the foot pedals. Now she moved back in her chair, reorganizing herself, looking down as her feet found the pedals. Quietly at first, she began to add the pedals. The music swelled along with her confidence as she continued, coordinating both her hands and feet. She remained focussed on the piano, disregarding me and the camera, although I sensed she remained aware of her audience as she frowned at hearing mistakes but continued to play, maintaining the integrity of the melody and tempo.  169  Figure 6.9: Alice — Finishing with a Flourish   While the hymn was unfamiliar to me, I began to recognize the chorus when she repeated it, and after a couple of minutes I could sense the ending was coming with the change in the tempo. This was confirmed as she brought both hands down on the keys in one last, loud chord before running her right hand up the keyboard, playing a little run of notes, and finishing with a flourish. Her right pinky finger struck the final note with emphasis before she swung her hand up high off the keys, signalling the end. She didn’t simply end with the final note of chorus; she embellished the ending with what looked like her signature flourish. This flourish was very familiar to me, my mother had a very similar way of ending her pieces. At that point Alice turned to me, expectant, seeking my response. 170   Alice had retained her musical abilities long into her diagnosis of dementia. At first uncertain of her ability, she was tentative. However, drawing on her past experiences she showcased multiple sophisticated skills and behaviours as she ever more confidently found her form. Her anticipation and preparation prior to playing would have been long practiced in past performances where she played and sang with her family. These actions reflected Alice’s awareness and understanding of what a performance entailed.  Throughout the piece, she drew on enduring and complex skills as she evaluated her playing making the necessary corrections and adjustments; she added an extra element in playing the foot pedals, highlighting her ability to coordinate and multi-task. Ultimately, her understanding of what constituted a performance was most evident in her stylized finale and patient expectation of the audience’s response. At this point Alice’s performances were rare and her repertoire was small, but she was still able to play the piano. 6.6.2 Still trying to do it (right). In analyzing my data, I realized that not only were the residents still able to do, but they were often still trying to do it right. In trying to do it right, residents demonstrated their ability to self-reflect and evaluate their successful participation in activities and social interactions. They maintained a sense of how well they were doing things and demonstrated agency and purpose in their continued efforts to try. These efforts provided a measure of importance, reflecting the meaning that activities or interactions may have held in the past. This was exemplified in Alice’s piano performance as described above.  She tried very hard to play well and do it right. Despite her best efforts, there was one note that was out of tune, and would never provide the right sound. When she played that note, her reaction was clear. Initially, she tried to correct her playing, before concluding that there was one note that was out of tune. Having determined this, she played the note several times quickly with her pinky finger while 171  telling me that it wasn’t right. Then shaking her head with a look of disgust on her face she continued with her performance. She had recognized the problem, but couldn’t fix it so she simply continued, but not before ensuring that I was aware that the problem was the offending note, not her playing. Figure 6.10: Alice — Identifying the Offending Note   Ed also exerted significant effort in trying to do things correctly. He participated in several music therapy activities that highlighted his determined efforts as he tried to follow directions and demonstrations successfully. The drumming classes always began with a series of fun warm-up exercises involving spinning ribbon sticks. Ed tried hard to imitate the MT’s example, even switching hands in an attempt to improve his ability: 172  He is spinning a stick with ribbons on it. Working hard to get the ribbons to spin the way the MT has gotten hers to spin. He sighs and sits back in the chair then leans forward to try again, this time with his left hand. (Ed, video 2ii) Sighing with frustration at his failed attempts, he stopped and carefully straightened out the ribbons, then concentrating on the ribbon stick raised it in the air to begin again. I was impressed, not by his hand-eye coordination as he struggled to spin the ribbons, but by his determination to keep trying despite the struggle.  Edith demonstrated a similar determination as she participated in the intergenerational dance programme: The girls raise their arms and then do a version of pat-a-cake clapping alternate hands with the residents. This is a complex movement, but Edith is clearly trying hard to do what the girls want her to do and what the girls are doing. She isn’t able to keep up but keeps trying. (Edith, fieldnotes, 31 January) While Alice’s efforts to do things right drew on her past musical abilities, both Ed and Edith were trying to do something less familiar. In reflecting on the level of motivation and effort expended by the participants as they tried to do, I sensed that past practice experiences were less important than their inner determination and drive. In unique and individual ways, all of the resident participants kept trying.   6.6.3 Still improvising. During the drumming group, Ed went beyond just trying to follow the MT’s lead correctly. As he played the piece and became comfortable with the rhythm and tempo, he began to engage in a deeply personal way through improvising and creating new patterns and endings to familiar songs. The following fieldnotes highlight his creativity through improvisation as he drummed and sang Swing Low Sweet Chariot along with the MT: 173  He shuts his eyes for a few seconds and begins to sing softly too. He is trying really hard to follow her. If he loses the beat, he has to focus very intently on the MT as she drums purposefully and leads him back to the beat. His feet have started tapping to the same rhythm as he is beating. The MT moves close to him and he can reach out to her bigger drum and begins drumming quickly there before moving back to his bongos. He improvises again at the end of the verse. He does a little drum roll before resuming the beat again. (Ed, video 2v) As in the previous discussion of Alice playing the piano, this example highlights the participant’s ability to coordinate multiple high-level, complex skills despite deficits associated with advanced dementia. Unlike Alice, Ed did not have a musical background to draw on. As he engaged in the drumming sessions, he coordinated his hands and feet in synchronized beat patterns; he anticipated and tried to follow both the drumming and singing of the MT; he created new beat patterns as he improvised; and finally, was able to reconnect with the established tempo.  6.6.4 Still Critiquing and Evaluating. The preceding sections examine the participants’ enduring abilities to do things and highlight the complex skills they demonstrated as they tried to do things right, through coordinating their skillsets and incorporating improvisation and creativity. Often these enduring abilities were manifest during activities that required a level of physical skill or ability, for example during recreation and rehabilitation programming. However, the participants also demonstrated enduring abilities that were less easily observed, abilities that were more cerebral in nature; more about thinking and less about doing. Notwithstanding their significant and obvious cognitive deficits, the participants also demonstrated their enduring abilities to engage in complex cognitive skills reflecting their opinions, critique, and evaluations.  174  This was demonstrated by Mary. Mary rarely participated in the structured activity programming.  She was reticent when invited, and most often declined choosing to remain on the periphery of activities and interactions. However, as she waited and watched, Mary was actively formulating opinions that generated critique, frequently moving beyond criticism to communicate sarcasm: One of her room-mates transfers into her wheelchair and wheels past the end of Mary’s bed on her way to the bathroom. The [other] resident is wearing a multi-coloured afghan over her knees and another one around her shoulders. Mary looks scornfully as she passes: “Who would wear all those colours together? They clash! Oh well, I guess . . .”  Mary raises her eyebrows and smirks. (Mary, fieldnotes, 26 October) Mary shared these critiques of her roommate during one of our go-along conversations. She was watching TV in her bed as I attempted to initiate a go-along conversation with her. Her answers to that point had been short as she conveyed disinterest in my questions and comments. However, as Mary observed her very colourful roommate with obvious disdain, she also invited me to share in her critique as she looked at me with a raise of her eyebrows and knowing smirk. I knew immediately what she was communicating in her embodied expression and smiled back to show that I understood while refraining from adding further criticism of the other resident.  Mary was difficult to engage but as I became more familiar with her ways of communicating and interacting, I began to gain some understanding of both her current and past experiences through her freely expressed and critical opinions of others. I sensed that her critique and judgement of the staff and other residents was a way to maintain some control in a world that was difficult for her to navigate. Mary’s verbal skills had remained strong in comparison with her physical abilities; subsequently, she was confident and clear in her speech, but she was 175  physically vulnerable. Through her critical comments and observations, Mary distinguished herself by distancing herself from the other residents while demonstrating none-the-less that she remained attuned.  Mary’s opinions and critiques were accompanied by a tacit sense that she could and would do things better than others could. Having declined to participate in decorating for Christmas, she engaged in a critical evaluation of the results: In line with the streamers there are brightly coloured Christmas balls placed carefully in the middle of each swag in the streamer. The balls are varying sizes and colours. They are spaced evenly but there is no apparent pattern . . .. This catches Mary’s eye. . .. “Why would they do that?” . . .. I look up following her gaze and I see the random pattern that she has seen. I ask for more details. “What don’t you like about the decorations?” She points to a very small ball amongst larger balls. She asks again, “Why would anyone do that? Why would they put that ball there? Don’t they know it doesn’t fit?” . . .. “Would you do it differently?” I ask. “Yes.” (Mary, fieldnotes, 13 December) I perceived that Mary had maintained a strong sense of pride and need for control despite her functional losses and dependence on others. She was clear and confident in her communication, readily formulating and expressing her ideas and opinions. She initiated our conversation about the decorations and set the tone with her critique; I followed her lead. I sensed our go-along conversations were meaningful for her in creating opportunities to share her critiques and judgments. Typically, these conversations were negative to start as Mary took control of the narrative, but as she became more comfortable, I sensed that she was less negative and created openings for me to share my opinions as well.   176  I observed expressions of pride and self-reflection from other participants. When video-recording a go-along conversation with Alice I mistakenly assumed her hesitation in being filmed lay in feelings of uncertainty, and perhaps a sense of insecurity regarding my purpose. It quickly became apparent that she was concerned with her appearance: She asks whether she should wear her scarf. I tell her the scarf looks really nice and we both agree she should continue to wear it. She wonders whether she should comb her hair. We stop and find her comb so she can fix her hair. (Alice, fieldnotes, 16 January) Alice maintained an enduring sense of pride in her appearance. I sensed that she had remained socially aware, and knowing she was about to be filmed was motivation to ensure that she looked her best.  Alice also took pride in her status. She recognized me in the dining-room shortly after engaging in a go-along conversation. As she was passing me on her way to Bingo, she invited me to join her. Smiling, she patted my arm as I pushed her wheelchair into room. She directed me to what I assumed to be her regular spot at the table. I sensed that the room was full of regulars and felt very much that I was a guest. As Alice looked around at the others, I sensed that she was pleased and proud to have someone to play Bingo with her. While others were seated alone, several residents were with a family member during the Bingo game. I felt that Alice was really pleased that she was sitting with me, close and right beside her. I had the distinct feeling that in that moment, I was her person. While she typically sat by herself to play, that afternoon, she established and maintained a physical connection with me throughout the Bingo game:  She sat with her left hand on my right arm for most of the game and I think after a while  she forgot she was holding me. We both started to watch each other’s cards ensuring 177   neither of us missed a call. . .. We seemed to be partners in Bingo, checking each other’s  cards, smiling and touching each other. I think I felt a connection as much as she did.   (Alice, analytic memo, 16 January)  Both Alice and Mary engaged with me in ways that highlighted the importance they still placed on being recognized and respected. It was important to Alice that she appeared attractive and well-groomed in my video-recording and she exercised agency in evaluating her appearance and preparing for the filming. For Mary it was important that I listened and respected her critiques and opinions. Thus, our go-along conversations became a platform for the participants to exercise their agency through making choices and sharing opinions, creating opportunities for meaningful engagement. 6.7 Summary Chapter six examines the data obtained through participant observations and go-along conversations with the resident participants. The findings explore understandings of their experiences of engagement in meaningful activities and relationships as reflected in three broad themes: Meaningful engagement in the mundane of everyday; Meaningful engagement in social connections; and Meaningful engagement in enduring abilities and sophisticated behaviours. Some of the data appeared in subtle ways and emerged slowly. With careful and close observation, this data evidenced the residents’ agency and purpose as they established their own meaningful quiet routines within the highly routinized long-term care environment. Meaningful engagement was also evident in the residents’ social connections that reflected their abilities to engage in embodied, musical, and humorous ways. Finally, they drew on a range of enduring abilities and sophisticated behaviours as they participated in meaningful activities and 178  relationships, demonstrating their abilities to coordinate and multi-task, create and improvise, and evaluate and critique. These findings highlight ways that the residents continued to experience and express meaningful engagement, Chapter seven expands on these findings through analysing the understandings of the staff and family member participants.      179  Chapter Seven: Matters of perspective: Living in the Past and Present If you can’t be with the one you love honey, love the one you’re with. - Stephen Stills, 1970 song lyrics  7.1 Introduction In this chapter my analysis and findings regarding the resident participants’ experiences of meaningful engagement are informed by the perspectives held and expressed by family and staff members. The narratives that emerged from family and staff member interviews had a strong historical focus highlighting what the residents knew and could do in the past. These stories were juxtaposed against observations of the residents’ current cognitive and functional losses, and highlighted the tensions experienced as staff and family with perspectives of the residents that shifted between the past and the present. Over time, the cognitive and functional losses that occur as dementia progresses typically become increasingly defining and  negatively impact the ways that people living with dementia are understood in terms of the persistence of their personhood, enduring abilities, and their ability to engage in meaningful ways (Hughes, 2014a). Thus, as I interviewed family and staff members, I explored how their present understandings of the residents were influenced by their perspectives of the past and the ways that they bridged these two perspectives.  I begin this chapter by exploring the memories of family and staff members, highlighting their understandings of the residents’ meaningful past relationships and accomplishments. Next, I explore family and staff understandings of the ways residents currently engaged in meaningful activities and social interactions in the long-term care home. Finally, the ways that their past 180  experiences were interwoven into their present lives is examined. At times the residents were effectively in liminal spaces created by perceptions of temporal and spatial shifts. These perceptual reality shifts provided insights into how the past continued to impact and influence the present. Family and staff drew on these insights to reconcile reality disjunctions and support residents to bridge their perceptions of past and present  The findings discussed in this chapter are reflected within the following three broad themes: Perspectives on the past: the ways they were; Perspectives on the present: the ways they are; and Navigating past perspectives: supporting present engagement.  7.2 Perspectives on the Past: The Ways They Were I conducted individual interviews with both family and staff member participants. Each of the family members was a designated substitute decision-maker for one of the resident participants. Four of the five family participants were children of the resident participants, while the fifth family member was a nephew.  All of the family members had long and continued close relationships with the residents. All of the fifteen staff member participants had significant direct interactions with the residents; the majority of the staff member participants were engaged in providing daily personal care or providing support for the residents’ participation in recreation and rehabilitation activities. Consequently, the resident participants were well known to all of the family and staff member participants.  Many of the stories that emerged within these interviews were historically based, focused on what the residents knew and could do in the past. These stories were typically juxtaposed against observations of the residents’ cognitive and functional losses in the present. The family members’ stories highlighted understandings of the residents’ abilities and passions prior to their 181  diagnosis of dementia and admission to the long-term care home. In contrast, the staff positioned the dementia diagnosis as the central lens for their observations of loss as they recalled how the residents were at admission as compared to their present ways of being. Thus, memories of both the residents’ distant and more recent pasts created a rich historical layer that shaped the data and informed my analysis of how family and staff understood the residents’ experiences of meaningful engagement in the present. 7.2.1 What they knew and what they did. My interviews with the family members ranged from one to two hours in length reflecting stories that they had gathered over many decades. In comparison, interviews with the staff were typically less than an hour and were built around stories of interactions that had taken place within time frames of only months to years. Regardless of the differences in time frames, the stories told by both family and staff members reflected numerous, detailed memories of resident experiences.  Family members highlighted and celebrated past experiences; I sensed these were efforts to ensure that I knew that the residents were once very different. Thus, their stories carried a particular resonance, juxtaposing what the residents knew and did, with what they currently know and do, shaping my understandings of the residents in the present through links to their pasts. In particular, many of the memories shared by family members centred around the residents’ central roles and meaningful relationships within their families. Family members emphasized their close relationships with the residents. In the face of the residents’ current challenges to recognise and interact with others, these stories carried emotional currency. These were stories that confirmed close and caring family relationships that were not always easily discernible in the present. For example, as Mary’s son emphasized her roles as a mother and grandmother, he recalled how involved she had been with her grandchildren. Living nearby as 182  his children grew up, Mary had provided daycare, hosted many family dinners, and joined in summer camping trips with her son and grandchildren. When I asked about the things that his mother had enjoyed the most in the past, Mary’s son stated, “children, children, and more children” (Mary-FM, 2 September). These important past relationships are now understood primarily through stories as family visits have become much less frequent and Mary’s oldest son is her primary visitor. Family members also emphasized the residents’ generosity in volunteering with their churches and community groups. They highlighted how the residents’ commitment to providing service was important and appreciated within those organizations. Edith’s daughter spoke at length of the significant relationships that Edith developed through extensive volunteering with her church, with seniors, and individuals living with special needs. She emphasized that Edith valued volunteering as a way to help those individuals living in her community who were vulnerable. Fully bilingual in Dutch and English, she visited care homes to read the Dutch Bible to the Dutch residents. Her daughter described how Edith could support others because she was “just a non-threatening kind of person. She would sit and listen. Somebody had a tale to tell [and] she’d just sit and listen” (Edith-FM, interview, 9 October).  The stories about the residents’ lives in the past also celebrated a wide range of expertise and abilities as their accomplishments were recalled. Family members told these stories with pride that elevated the residents well above their dementia diagnosis. For example, Ed’s nephew was very proud of his uncle’s education; Ed had earned a university education despite having grown up on a farm in a small rural town in the 1940s. He emphasized his uncle’s academic accomplishments in the face of his current cognitive losses, bemoaning that “one of the sad things about [Ed’s] condition [now is] that he used to read . . . [and] with his memory now he 183  can’t remember for five minutes what he reads” (Ed-FM, interview, 5 August). Similarly, Anna’s son was clearly proud of his mother’s skills and expertise describing how she was valued for her creativity in designing moss baskets and flower arrangements; a seasonal employee “she was laid off every winter but she was one of the first to be called back because she was phenomenal in making moss baskets” (Anna-FM, interview, 6 December). Music and musical ability were identified by both family and staff members as having been significant for several of the residents in their pasts. In particular, both family and staff members told me about the central role that music had played in Alice’s life. Having been audience to Alice playing the piano myself, I was not surprised when her daughter described the important place that music had held in her family while growing up. Alice had taught her children how to harmonize together, and her daughter observed that even now, harmonizing with Alice during hymn sing at the care home brought back positive memories for both of them. She recalled that her mother was “quite proud of the way she had us kids singing” (Alice-FM, interview, 23 August).  7.2.2 The underlying stories. The stories told during these interviews were largely those of the everyday events and accomplishments that might easily have been told about other individuals who had lived through similar times in similar places. The family members’ proud descriptions of the residents’ past experiences of meaningful family relationships and accomplishments all recalled the everyday experiences of life. However, I also sensed an added layer of significance and importance in their descriptions of the residents, recognizing that these were stories describing the experiences of people living with advanced dementia before their diagnoses. These stories allowed the families to honour and evidence the abilities, skills, and knowledge that had existed before the losses associated with dementia became apparent. I heard 184  stories that reflected how the residents found meaning through relationships, the arts, and activities. While elements of these threads were shared among the residents, it was the details in the stories of individual residents that added depth to my understanding of who the residents were and by extension who they are. These underlying stories revealed strengths and abilities that remained apparent in important and nuanced ways in the stories of the residents in the present.   With the exception of my interview with Ed’s nephew, I heard the stories of a generation of women who typically did not work outside their homes. The four women residents had all shared similar experiences of working within their homes, taking care of their children and grandchildren, and managing the daily routines of running a home; however, they were also involved in activities through their work, churches and community agencies. Their family members described their commitment to volunteering, emphasizing skills and abilities related to organization, decision-making, and networking. These descriptions were of a different flavour to stories of expertise in running the home; these were descriptions that captured different elements of the residents’ roles and contributions, pointing to personality traits and personal strengths that began to emerge as I came to know the residents in the present. For example, after raising her children, Edith was increasingly involved with volunteering through her church and local community groups; however, she was dependent on her husband for transportation. Her daughter smiled as she proudly recalled how at the age of 63, “one day at the breakfast table she got up. ‘I think I want to learn how to drive’” (Edith-FM, interview, 9 October). Her husband was discouraging and refused to teach her, so Edith simply found a driving school and signed up for lessons: 185  And she got in a classroom with a bunch of teenagers. They had to say which high school they were from. And when they went through everybody, my mom said “well, as you can tell it’s been a while since I was in high school”. ... And she took the lessons and she had her learner’s [license]. (Edith-FM, interview, 9 October) Subsequently, Edith got her driver’s license and drove for the next 18 years which allowed her to continue with her volunteer and church commitments long after her husband had died. Her daughter summed up Edith’s philosophy of life: She’s very brave. She’s just like, you know she wants something done [and] she’d always say “well, you look at the end of your own two hands and say well you get it done. You can make it happen. You want something done you and you go and make it happen. Don’t sit around and wait for someone else to do it.” (Edith-FM, interview, 9 October) Alice and Anna were both employed outside their homes. Alice moved outside of the role of homemaker after her children had grown, getting a job in a bank. As her daughter noted, it was a job where her strong organizational skills were an asset. Anna’s son told me stories about her work experiences that reflected his pride in her creativity, work ethic, and independence. Ed’s nephew also highlighted his uncle’s personal strengths as he told stories of the past. He emphasized how Ed had taken the road less travelled in leaving the farm and seeking post-secondary education. Through his nephew’s stories, I understood how the motivation behind Ed’s decision would have required significant confidence in his scholarly abilities, as well as a level of bravery and sense of adventure in leaving the familiarity and comfort of the farm to attend university.  Baldwin (2006) observed that we tell stories to construct and represent ourselves. For the residents in my study, communication and cognitive challenges made recalling and sharing their 186  own narratives difficult. Therefore, the stories told by others took on particular importance. In sharing their memories of the residents, family and staff brought the past into the present. Their stories of past successes and accomplishments allowed them to create a more complete picture of the residents, making room for celebration within the broader narrative of loss.  7.3 Perspectives on the Present: The Ways They Are As discussed above, the interviews began with sharing stories of the residents from their pasts. However, as each interview progressed, I shifted the focus of my questions and comments to the present, intentionally moving away from past perspectives. The stories then took on a new tone, replacing celebratory descriptions with acknowledgements of loss. As I listened to stories of what the residents no longer knew and could no longer do, I recognised the value of having heard the stories of the past first.  These stories of the residents’ strengths and abilities had provided me with a sense of what had been important or significant in their lives, and by extension provided me with direction for understanding the data I gathered through resident participant observations and go-along conversations.   7.3.1 What they know and what they do. As I interviewed family and staff participants regarding their understandings of the residents’ experiences in the present, I was conscious to not ask leading questions. While both family and staff emphasized what the residents no longer knew and could not do, I wanted to remain open to the potential for hearing positive responses regarding the residents’ current abilities and relationships. Thus, I took a general approach in exploring the residents’ current experiences related to engaging in activities and social connections. How do they spend their days? Tell me about the ways that they socialize with others. What do they really enjoy doing? What do you think they might want to do? Despite 187  providing these openings, overwhelmingly family and staff responses highlighted the residents’ increased dependence and increased social isolation since moving to the care home.  Family and staff participants described the residents’ current everyday experiences with a strong focus on the residents’ mobility and mood, highlighting their physical and cognitive losses. 7.3.1.1 The impact of physical losses on engagement. Mobility is intrinsically linked with independence and function; thus, mobility losses negatively impacted what the residents were able to do physically and increased the amount of help they required for meeting their needs. Staff emphasized the impact of the residents’ mobility losses linking their mobility impairments with their declining levels of independence and participation in activities.  For example, when I asked questions about what Ed typically did each day, the RCA’s initial response was: “Physically he’s not as good as he was when he first came here . . .. He can still transfer himself . . . but he doesn’t walk anymore” (Ed-RCA, interview, 19 September). Similarly, when I asked general questions about Edith’s current participation in activities, the RCA began by describing Edith’s deteriorating mobility since her admission: “She walked down the hallway from there to the [end] every day, a few times back and forth. [She was] quite independent, yah so and then over time she deteriorated and now she doesn’t walk anymore” (Edith-RCA, interview, 21 November). The rehabilitation assistant also pointed to Mary’s declining ability to walk stating that Mary had been her “one walker that used to go the furthest . . . [but] . . . now things are very different. She is now in a tilt wheelchair” (Mary-Rehab Assist, interview, 6 December).  188  Family and staff drew links between the residents’ decline in both physical ability and energy levels, and their subsequent decline in motivation and participation in structured programming. For example, the rehabilitation assistant observed how Mary’s loss of mobility had negatively impacted her participation in activities: “Now she’s in bed all the time and doesn’t participate in anything. If you look at her attendance record over the last few months it says, ‘not up, not up, not up’” (Mary-Rehab Assist, interview, 6 December). Staff were cognizant of how the residents’ energy levels translated in