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Challenges of person-centred dementia care : a critical ethnography of culture change in long-term care Kelson, Elizabeth Ellen 2013

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CHALLENGES OF PERSON-CENTRED DEMENTIA CARE: A CRITICAL ETHNOGRAPHY OF CULTURE CHANGE IN LONG-TERM CARE by Elizabeth Ellen Kelson B.A, Trent University, 1989 M.A., Simon Fraser University, 2006 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE STUDIES (Interdisciplinary Studies) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) January 2013 © Elizabeth Ellen Kelson, 2013  !  ABSTRACT To address shortcomings in traditional long-term residential care (LTRC), facilities are increasingly adopting person-centred care (PCC) approaches. Despite the proliferation of PCC models and discourses, there is limited understanding in gerontology of how such approaches are experienced on the ground. This dissertation addresses this gap through an ethnographic study of Cedar Grove, a large facility located in an urban centre in Western Canada that is undergoing culture change. During 12 months of fieldwork, I explored the range of issues this organization encountered as it endeavours to maintain the “person” at the centre of care. The purpose of this study is to contribute empirical data on how this orientation shapes daily life for residents, families, staff and administrators. This study is informed by the literatures of PCC and personhood theory, and it draws on a conceptual framework integrating critical, feminist and Foucauldian gerontology. It analyzes care across personal, interpersonal, and organizational levels, and considers the broader social-political-economic context of LTRC. Data generation employs multiple methods: participant observation, Dementia Care Mapping (DCM), group meetings, individual interviews, researcher-produced photographs, and a review of relevant organizational and policy documents. Findings reveal organizational tensions between ideals of safety and PCC, multifaceted challenges to relational care, and the importance of everyday activity toward social inclusion. Data suggest five key implications: 1) Intersectionality highlights residents’ disparate access to social inclusion and ways to support more heterogeneous populations, 2) Increased access to unstructured, everyday activity might address boredom and foster meaning in residents’ lives, 3) Job descriptions might better prioritize social care and !!"  ! flexibility in work roles to better address issues of time constraints, workload, and resident acuity, all of which challenge PCC, 4) Organizational support for narrative-based biography is vital to overcoming systemic barriers to its use in practice. Finally, 5) A methodological implication of this study relates to how DCM facilitated insight into residents’ non-verbal expressions of personhood and bodily, affective communications. The mobilization of this research to practice during fieldwork highlights DCM’s ability to convey positive practice skills in a way that supports uptake, positively impacting residents’ quality of life.  !!!"  !  PREFACE  Certificate of Approval University of British Columbia, Office of Research Services Behavioural Research Ethics Board UBC BREB Number: H09-03091  !#"  !  TABLE OF CONTENTS  ABSTRACT.............................................................................................................................. ii" PREFACE ................................................................................................................................ iv" TABLE OF CONTENTS.......................................................................................................... v" ACKNOWLEDGEMENTS...................................................................................................... x" CHAPTER 1: INTRODUCTION: BACKGROUND AND SIGNIFICANCE ....................... 1" Research Problem ................................................................................................................. 6" Study Implications............................................................................................................. 9" Study Purpose and Objectives .......................................................................................... 9" Dissertation Overview .................................................................................................... 10" CHAPTER 2: REVIEW OF SELECTED LITERATURE.................................................... 12" Problematizing Traditional Care......................................................................................... 13" Transforming LTRC ........................................................................................................... 16" The Role of Personhood.................................................................................................. 16" The Role of Person-Centred Care................................................................................... 19" Culture Change Models .................................................................................................. 21" Applying Theory in Practice............................................................................................... 23" Communication Skills Training in Person-Centred Dementia Care .............................. 25" Resident Biography ......................................................................................................... 27" Challenges to Culture Change in LTRC ............................................................................. 31" Staffing Levels and Quality of Care................................................................................ 31" Defining Quality of Life .................................................................................................. 34" Expanding Concepts of Personhood and PCC—Conceptual Issues to Date ...................... 36" Embodiment .................................................................................................................... 36" The Physical Environment .............................................................................................. 37" Agency............................................................................................................................. 39" Relationship-Centred Care ............................................................................................. 40" Ethics in Person-Centred Care............................................................................................ 43" I/Thou and I/It Modes of Relating................................................................................... 44" Intentional and Non-Intentional Modes of Relating ....................................................... 45" #"  ! Activity, Social Inclusion, and Exclusion in LTRC ........................................................... 47" Factors in Social Exclusion ............................................................................................ 49" Successful Aging and Activity ......................................................................................... 51" Activity, Well-Being, and Dementia in LTRC ................................................................. 54" Chapter Summary ............................................................................................................... 59" CHAPTER 3: CONCEPTUAL FRAMEWORK................................................................... 61" Critical Gerontology ........................................................................................................... 61" Foucauldian Gerontology ................................................................................................... 63" Feminist Gerontology ......................................................................................................... 70" Changing Culture: The “Person” in Care ........................................................................... 75" CHAPTER 4: RESEARCH DESIGN..................................................................................... 78" Methodology: Critical Ethnography ................................................................................... 79" Research Process................................................................................................................. 82" Entering the Field ........................................................................................................... 82" Study Site Description..................................................................................................... 84" Philosophical Orientation at Cedar Grove..................................................................... 85" Study Sample and Sampling Approach ........................................................................... 86" Recruitment and Consent ................................................................................................ 91" Data Generation .................................................................................................................. 93" Participant Observation.................................................................................................. 95" Shadowing..................................................................................................................... 100" Summary of PO at Cedar Grove ................................................................................... 100" Visual Data: Researcher-Produced Photographs ........................................................ 101" Dementia Care Mapping............................................................................................... 103" Group Meetings ............................................................................................................ 107" Individual Interviews .................................................................................................... 109" Review of Relevant Documents ..................................................................................... 111" Data Analysis and Interpretation ...................................................................................... 111" Introduction................................................................................................................... 111" Data Analysis.................................................................................................................... 114" Coding and Thematic Analysis ..................................................................................... 115" Analytic Lens: Citizenship ............................................................................................ 116" Analytic Lens: Intersectionality .................................................................................... 117" DCM Interpretation ...................................................................................................... 119" Document Review and Discursive Practices ................................................................ 120" Establishing Trustworthiness............................................................................................ 122" Reflexivity...................................................................................................................... 122" Power and Reflexivity in the Interview Process ........................................................... 124" #!"  ! Positionality in the Field............................................................................................... 127" Reciprocity in the Field................................................................................................. 133" Representation and Voice ............................................................................................. 134" Ethical Concerns ............................................................................................................... 137" Study Limitations.............................................................................................................. 140" CHAPTER 5: THE SOCIAL WORLD OF CEDAR GROVE: RESIDENT VIGNETTES 143" Holly Street: Emilia, Fran, Hazel and Eva........................................................................ 145" Juniper Way: Hannah, Ruth, and Maria ........................................................................... 156" Chapter Summary ............................................................................................................. 163" CHAPTER 6: SAFETY FIRST: BALANCING RISK, PROTECTION, AND THE NEEDS OF THE PERSON ................................................................................................................ 165" Resident Safety: Exploring Policy and Practice at Cedar Grove...................................... 166" Introduction................................................................................................................... 166" Beyond Eden: The Impact of Care Philosophy............................................................. 167" The Structure of Safety: Stigma, Dementia, and Levels of Care .................................. 171" “Challenging Behaviours” ........................................................................................... 175" Preventing Falls: “Keep Mum Safe!” .......................................................................... 179" Surveillance and Space ..................................................................................................... 181" Mitigating Social Isolation: The Role of Private Companionship.................................... 183" Preventing Conflict ........................................................................................................... 187" Ethical Issues: Power, Advocacy, and the Role of the RCA ............................................ 189" Cedar Grove Staff: Physical Safety at Work .................................................................... 194" Lifts and Slings: A Bathing Care Encounter................................................................. 195" Evaluating Risk: Resident Im(mobility) ........................................................................... 199" Technological Supports and Policy Changes: Impact on the Ground ......................... 200" “There’s no time for kind, calm caring”: Time Constraints and Workload ................ 201" “Aggression” and “Violence”: A Vision for Prevention in Practice........................... 206" Collective Safety: Outbreaks, Quarantine and Infection Control ..................................... 211" Chapter Summary ............................................................................................................. 213" CHAPTER 7: CULTURAL PERSPECTIVES ON CARING: THE SIGNIFICANCE OF RELATIONSHIPS AT CEDAR GROVE ............................................................................ 215" Resident Perspectives on Relationship in Care................................................................. 219" Dementia Care Mapping Data on Relationships in the SCU ....................................... 224" Staff Perspectives on Relationships in Care ..................................................................... 232" #!!"  ! Dementia Care Mapping Data: Staff Perceptions of Implications for Practice .......... 233" Exploring the Digital Divide: Computer Access, Literacy, and the Role of the RCA... 238 Job Descriptions: The Duties and Responsibilities of the RCA.................................... 241" Administrative Perspectives on Culture Change: “It’s not the what, but the how”.......... 244" Achieving a Caring Culture: Promoting a Team Approach ......................................... 245" Organizational Documents and the Language of Care ................................................ 249" Family Perspectives of Relational Care............................................................................ 253" Chapter Summary ............................................................................................................. 260" CHAPTER 8: UNSTRUCTURED ACTIVITY AND SOCIAL ENGAGEMENT ............. 263" Resident Views on Activity and Social Engagement: Barriers to Participation .................................................................................................... 264" Everyday Activity and “Reality TV”: Watching Television Together............................. 267" Television, Dementia Care, and Power: Who’s in Control of the Remote?..................... 273" Food and the Dining Experience: Everyday Meals, Unstructured Activity, and Celebrations ...................................................................................................................... 275 Everyday Dining: Menu Options, Costs, and Subjective Taste .................................... 276" The Dining Experience and Socialization..................................................................... 278" Celebrating with Food .................................................................................................. 281" Food Safety ................................................................................................................... 282" “Leisure” Reconsidered .................................................................................................... 283" Residents-Resident Interactions in Unstructured Time: Relational Gestures on the SCU ................................................................................... 287" Chapter Summary ............................................................................................................. 291" CHAPTER 9: DISCUSSION................................................................................................ 293" Residents’ Social Worlds: An Intersectional Analysis ..................................................... 294" Safety First: Space, Power, and Organizational Practices at Cedar Grove....................... 303" Balancing Risk and Freedom: Space, Power and Acts of Resistance .......................... 304" Making Decisions: Establishing Best Interests and Gaps in Practice ......................... 311" Challenges to Relational Care Practice............................................................................. 315" 1) Workload, Resident Acuity, and Job Descriptions ................................................... 315" 2) Staff Hierarchy and Lateral Power .......................................................................... 318" 3) Finding the Right Message: “Serving Tea” as “Actual Work” ............................... 320" 4) The Use of Resident Biography in Practice.............................................................. 322" Fostering Relational Care Practices: Philosophical Considerations ................................. 324" Finding Meaning in the Everyday .................................................................................... 331" Television Use in Long-Term Care............................................................................... 334" #!!!"  ! Dining and Person-Centred Care ................................................................................. 340" Toward Social Inclusion ................................................................................................... 342" CHAPTER 10: CONCLUSION AND STUDY IMPLICATIONS ..................................... 348" Study Implications ............................................................................................................ 350" Overcoming Organizational Barriers—Employing an Intersectional Perspective ...... 351" Valuing Everyday Activities—Supporting Well-Being and Social Inclusion................ 352" Supporting Relational Practice..................................................................................... 354" Using Biography in Care Practice ............................................................................... 355" Mobilizing Knowledge—Toward Person-Centred Care Practice ................................ 357" Balancing Needs: Working to Keep “the Person” at the Centre of Care.......................... 359" REFERENCES ..................................................................................................................... 363" APPENDICES ...................................................................................................................... 415" Appendix A: Site Photographs ......................................................................................... 416" Appendix B: Research Poster ........................................................................................... 420" Appendix C: Presentation Evaluation Form ..................................................................... 421" Appendix D: Sample DCM Chart..................................................................................... 422" Appendix E: Sample Consent Form ................................................................................. 423"  !$"  !  ACKNOWLEDGEMENTS This research was made possible through the support of the Centre for Research on Personhood in Dementia (CRPD) at the University of British Columbia. I consider myself lucky to be part of this vibrant academic community. It has supported me intellectually, emotionally, and financially throughout this study. A special acknowledgement and thank-you to my supervisor, Dr. Deborah O’Connor, whose academic enthusiasm and guidance has been vital to this research. To my committee, Dr. Alison Phinney and Dr. Habib Chaudhury, I am deeply appreciative of your support and scholarly advice over these many years! I would also like to thank Dr. Sing Mei Chan. Sing Mei you have been a great support and made this long road a lot less arduous. To Maria Couto, whose leadership and friendship started me on this journey from an Adult Day Centre in East Vancouver many years ago, and who continues to provide a vibrant context for the meeting of practice and theory. Thank-you. Thanks to John and Patricia, for stuff. To my parents—for a lifetime of guidance, support, and for your commitment to political engagement—how to thank-you… I could not have finished this program without the love and support of Glen Lowry. Glen, your energy, humour, guidance, and love have helped me immeasurably; I am so grateful to have you in my life. Finally, I would like to extend my sincerest thank-you to the many participants of this research. I am deeply appreciative of your willingness to share your insights and wisdom with me, without which this study would not have been possible.  $"  !  In spite of this, her gestures, her smile, her voice remained unchanged. A blurred version of her charm survived, together with hints of a sense of humour. She was suffering a disturbance of her soul, not just a loss of memory, yet she was still intact. —M Ignatieff Scar Tissue (1993)  $!"  !  CHAPTER 1: INTRODUCTION: BACKGROUND AND SIGNIFICANCE Ageism is prevalent in the media, in our health care and in our social systems whereby growing older is constructed as a social problem based on inevitable decline and loss. The inclusivity of aging sets it apart from other prejudices based on differences of gender, race, or ability. Paradoxically, ageism is predicated on an unacknowledged fact that the majority of people from the “inಣgroup,” that is young people, are growing old and will eventually (if they are lucky) enter the “outಣgroup” (Nelson, 2004, p. x). Old age is held as a marker of difference, yet it cuts across almost all socially ascribed categories of difference, compounding disparities based on race, class, sexuality and ability. Discrimination based on age has been called one of the most socially condoned and institutionalized forms of prejudice in the world (Nelson, 2004). The idea of old people functions to remind the young of their own mortality. Many people seem to feel that old age is something that happens to someone else; however, as Tinney (2008) so eloquently puts it, “The only difference between them [old people] and us is they got there first. And that’s it” (p. 223). Indeed it is because an increasing number of us are, baring illness or accident, reaching “the fourth age” (Baltes & Smith, 2003) that the pursuit of optimal care and living situations toward the end of life is in the interest of all Canadians. Not only will we grow older, but so too will our family and friends, making it in our collective best interests to attain long-term care that is able to meet our social, emotional, and physical needs – and rights. In Canada and throughout the world, the health and social welfare of older adults has emerged as a significant challenge in the face of global economic fiscal restraint. Debates %"  ! ensue over the ability of societies to pay for the increased costs typically associated with older age. This widespread fear of a demographic shift toward an aging population in Western nations is marked by pejorative references to ‘the gray wave” or “silver tsunami” and dire predictions about the social, economic, and political consequences of an aging postWar generation (i.e. baby boomers). These predictions signal to some “alarmist demography” (Katz, 1992) or “apocalyptic demography” (Robertson, 1990, 1997) that serve particular political agendas allowing for further marginalization and ultimately the abuse of older adults. At a macro level, response to aging populations tends to centre on negative questions such as: How will society cope with an aging workforce? What will we do with growing numbers of healthcare consumers? How can the economy cope with the increased strain on resources? Older adults are seldom seen in terms of their contributions to society. On the level of the individual, the effects of dire demographic predictions might be described as twofold: 1) older adults are stigmatized and marginalized in social interactions, which often exacerbates other problems, and 2) older adults internalize negative characterizations of their own productivity or independence and often begin to see their own lives in terms of increased fragility, frailty, and loss (Burgener & Berger, 2008; Dobbs, Eckert, Rubinstein, Keimig, Clark, Frankowski, & Zimmerman, 2008; Goffman, 1963/1986; Moss & Moss, 2007; Twigg, 2004). Ageism is often associated with what appears to be a fear of dementia. This fear is not entirely unfounded. In Canada, as in most of the industrialized world, the likelihood of developing dementia increases with age: after the age of 85, the disease affects one in three seniors (Statistics Canada, 1996). Thus, statistically speaking, advanced age represents a key risk factor for dementia; the longer one lives the more likely one is to develop it. It is worth  &"  ! noting, however, that this statistic also reveals that twoಣthirds, the majority, of our oldestಣold citizens does not have dementia. Yet, despite this demographic fact, it is the negative ideas and attitudes about advanced age that remain prevalent in the public sphere (Levy & Banaji, 2004; Whitbourne & Sneed, 2004). Inasmuch as growing older does not equal dementia, the dominant social construction of Alzheimer disease (AD), in particular, rests on a correlation of age with increasing forgetfulness, dependency, and loss of selfhood, which has contributed to widespread anxiety and fear. As Milne (2010) succinctly states, “the ‘D’ word” is “a profoundly stigmatizing condition” (p. 231). Herskovits (1995) asserts, “With the popularization of Alzheimer's, the subjective experience of aging and of ‘senility’ have become increasingly horrific and monstrous; we are all afraid of losing our minds as we grow old” (p. 148). Now approximately 30 years beyond the beginnings of the “Alzheimer’s disease social movement” (Fox, 1989; Lyman, 1989; McLean, 2007b), perhaps nowhere are ageism and the stigmatization of older people more evident than in relation to the characterization of people with dementia. The largely (Western) negative conceptualization of aging itself and its impact on dementia care significantly influences societal responses to the care needs of older adults, and this realty serves as the jumping off point for this critical ethnography. It has been over a decade since Katz (1996) called for a critical gerontology that expands its focus from the individual to the social and political context in which we age. Katz (1996) critiques these types of cultural representations and calls on mainstream gerontologists to examine their own practices and biases in knowledge production: “The aim is to go beyond an understanding of what gerontology says and grasp what gerontology does in the world of aging” (p.7).  '"  ! Our demographic shift has profound implications for “what gerontology does” and our need to do more, particularly in relation to long-term residential care (LTRC). Upon entering a Canadian facility, one is likely to notice that people are older and generally sicker than was once the case. Specifically, people who move to residential settings are increasingly more likely to have dementia, to be functionally dependent, and to be closer to the end of their lives (McGregor & Ronald, 2011). These demographic changes place greater demands on direct carers (Banerjee, Daly, Armstrong, Armstrong, Lafrance & Szebehely, 2008). Resident populations are also more heterogeneous than they have been historically. The shift in the resident profile has occurred in a context in which traditional, biomedically-driven models of care have been criticized for their inability to extend care beyond the provision of medical care and adequately address the psychosocial context of care (Chenoweth, King, Jeon, Brodaty, Stein-Parbury, Norman, Haas & Luscombe, 2009; McLean, 2007b; Woods, 2001). This deficit-focused traditional care has been accused of failing to recognize residents’ individual needs and preferences, offering instead a cookie-cutter or one-size-fitsall approach that serves no-one well (Lyman, 1989; Kitwood & Bredin, 1992; Parker, 2001). Since the 1990s, in response to increasing criticism of traditional care, residential care has begun to shift away from the biomedical model toward care that is philosophically grounded in person-centred care (PCC) approaches (Brooker, 2004; Innes, 2009; Martin & Younger, 2001). Influenced significantly by the scholarship of Tom Kitwood on personhood and dementia, there has been a proliferation of PCC models that emphasize a more positive conceptualization of dementia, the subjective experiences of dementia, and the importance of social processes on well-being and quality of life in LTRC. The Eden Alternative, the Pioneer Network, and Gentlecare are a few examples of models that have adopted person-  ("  ! focused philosophies in North America. This focus does not negate the serious implications of dementia on the person or his or her social network. Rather, it advances the importance of considerations of the “totality of the person” (Sabat, 2011, p. 96) through recognition of the interplay of bio-psycho-social forces on a person’s experience of dementia. Proponents of the new “culture of care” (Kitwood, 1997; Ronch, 2004) associated with PCC advocate for a departure from task-based, custodial care that prioritizes “bed-and-body work” (Gubrium, 1975/1997) to relational care (Nolan, Davies, Brown, Keady, & Nolan, 2004) that endeavours to foreground the personhood and interconnectedness of residents, their families, and care staff. Proponents of personalized modes of caring counter notions of hopelessness and despair with the proposition that given positive relationships and a supportive social milieu persons with dementia can in fact achieve relative levels of well-being (Kitwood, 1990/2007, 1995/2007; Kitwood & Bredin, 1992). This study grapples with the fact that, despite the so-called “nursing home cultureಣchange” (Rahman & Schnelle, 2008), LTRC continues to be considered as a site of social and physical segregation for residents and care staff where women in low-paid, lowstatus positions tend to bear the burden of caring for the complex needs of very frail, vulnerable residents, the large majority of whom are women (Diamond, 1992; Eckenwiler, 2011; Gubrium, 1975/1997; McLean, 2007a; Reed-Danahay, 2001; Vesperi & Henderson, 1995). Notwithstanding the popularity of person-centred models, evidence of high staff turnover rates, low job satisfaction, and stigma associated with LTRC continues. Moreover, residents continue to report personal experiences of social isolation, inactivity and boredom, all key detractors from quality of life (Ice, 2002; Schreiner, Yamamoto, & Shiotani, 2005). Residents still spend their days under-stimulated and without any activity (Cohen-Mansfield,  )"  ! Thein, Dakheel-Ali, Marx, 2010). The overwhelming quantity of research on PCC indicates that such approaches are seen to offer a vital potential for appropriate and humane dementia care. Certainly the volume of research in this area suggests that any investigation of dementia care in institutional settings should include an exploration of the extent to which LTRC facilities implement personಣcentredness. It seems that in spite of the widespread adoption of a language that reflects person-centred rhetoric in LTRC (Brooker, 2004), the social, economic, and political context continues to perpetuate a disease-focus of care in which quality of life issues are ancillary to medical care. With respect to Canadian legislation around LTRC, Coughlan and Ward (2007) point out that in general, despite Canadian’s general agreement about the importance of universal health care, the Canada Health Act does not cover nursing homes. Rather, as these researchers demonstrate, LTRC in Canada is not federally regulated and as such it is currently determined by “differing legislation and funding criteria reflecting ideological commitments in each province or territory” (Coughlan & Ward, 2007, p. 44).  Research Problem Long-term care facilities have been described as businesses—with residents depicted as health-care consumers, customers, or clients—within a health-care industry led by market forces and a profit motive (Baars, 2006; Diamond, 1992; Gubrium, 1975/1997; Vesperi, 1995). Coinciding with broader socio-political contexts, the pervasive influence of ageism, societal fears, and stereotyping associated with age and dementia, are factors in inadequate funding of LTRC (McLean, 2007b). These forces impact residents, staff, administrators and *"  ! the overall “culture of care” in complex and interrelated ways. For residents, the need to improve quality of life is a pressing concern (Reid, Chappell, & Gish, 2007), yet we lack understandings of what constitutes quality of life in residential settings (Kane, 2001), especially for persons with dementia (Moyle, McAllister, Venturato, Adams, 2007). Moreover, although theory supports the value of person-centred approaches, how this focus makes a difference at the level of practice in the day-to-day life of residents is not clear. Research points to a lack of appropriate training and low status for formal carers who work with older adults with dementia (Brooker & Surr, 2005; Nolan et al., 2004). Both residents and care workers share struggles with respect to disempowerment, disenfranchisement, and disconnection from a wider society. Administrators face pressures in relation to the business of LTRC, regulatory structures, and providing for the increasingly complex care needs of residents alongside managing front line workers. Long-term residential care exists within sociopolitical contexts where organizational policies and institutional practices are accused of being at odds with PCC outcomes. Personcentred care has been proposed as a holistic alternative to conventional care that strives to address the innumerable challenges of LTRC (Brooker & Surr, 1995; Hughes, Louw, & Sabat, 2006; Kitwood, 1997; Woods, 2001). Nevertheless, there is the suggestion in the literature that a dichotomy exists between the real work of LTRC and social care. Disparities seem to exist between the various regulatory practices that are seen to prioritize the needs of the industry and the institution over for example, quality of life domains, such as comfort, meaningful activity, autonomy, and relationships (Boyle, 2008; Kane, 2001). Hence, critics of policy decisions that have resulted in the widespread adoption of person-centred models claim they are misguided because they focus to a large extent on the individual experience of  +"  ! dementia while failing to consider wider socio-political forces that influence LTRC environment (Nolan et al., 2004; McCormack, 2004). These models are also charged with placing “huge demands on family carers and paid care workers” (Innes, 2009, p. 49). Ultimately, the question is whether the widespread influence of person-centred philosophies have created positive change in LTRC living and working conditions. Moving beyond considerations of culture change through the binaries of evaluation —good vs. bad care, personal or impersonal care—this study explores over time the range of issues that a LTRC facility encounters over time as it endeavours to integrate the tenets of person-centredness, to move theory into practice. My research seeks to describe and interpret the impact of PCC principles on frontline care. The basis of this study relates to the assertion that in spite of a lack of conceptual clarity and critiques of PCC that relate to practice, an increasing number of care facilities define themselves as person-centred and yet little is known about how this orientation is experienced on the ground (Lopez, 2006a). Using a critical, ethnographic approach, this study sheds light on this vital area of LTRC and dementia care research by describing and interpreting day-to-day life in a residential setting that espouses a person-centred philosophy of care. It presents data from the perspectives of the various constituent groups that comprise the culture of care in relation to the personal, interpersonal and structural components of care, exploring how these spheres overlay, interact and conflict to shape experiences of LTRC. The declaration that “Personcentredness is now clearly on the agenda as a result of his [Kitwood’s] work (although, not necessarily interpreted as Kitwood intended)” (Baldwin & Capstick, 2007a, p. xix) warrants exploration. Although there is considerable theoretical research on the value of PCC, there is paucity of empirical research that indicates its potential to improve LTRC. This study  ,"  ! proposes to fill this research gap by providing an in-depth analysis of a LTRC facility that endeavours to put the “person” at the centre of care. Study Implications The implications of this study are wide-ranging. Firstly, this study offers critical insights into the experiences and perspectives of long-term care residents, in particular, persons with dementia. Views of residents on aspects of care that so profoundly impact their everyday are too seldom acknowledged and therefore are not adequately represented in policy and practice (Cahill, Begley, Topo, Saarikalle, Macijauskiene, Budraitiene, Hagen, Holthe, Jones, 2004; Dewing, 2002; O’Connor, Phinney, Smith, Small, Purves, Drance, Donnelly, Chaudhury, & Beattie, 2007; Train, Nurock, Kitchen, Manela, & Livingston, 2005). This study also presents the challenges and rewards to staff that provide direct care to residents. Findings from this study will result in the development of clinically-relevant dementia care research to contribute to enhanced knowledge translation in care practice and inform policy to positively affect long-term health care services available to a marginalized population of older adults and direct carers. Finally, this study has important implications more broadly to contribute to theoretical knowledge in relation to personhood, personcentred care and the transformation of a culture of care.  Study Purpose and Objectives This critical ethnography used multiple qualitative research methods to explore the contention that despite the pervasiveness of person-centred approaches to care, which suggests widespread support of its tenets, research indicates an enduring disconnect between the philosophy underpinning such approaches and the day-to-day realities of LTRC. I wanted -"  ! to investigate how a long-term residential care facility that foregrounds the “person” influences culture members’ experiences of daily life and the social world in which they live or work. This study was led by the following research objectives: 1) To describe the culture of care within a LTRC facility that is organizationally committed to a person-centred philosophy of care. 2) To explore how staff, residents, and family members experience the philosophy of care. 3) To understand how resident biography is understood and functions in this facility. 4) To identify marco-level, socio-political influences on organizational practices and policies that facilitate and/or impede a person-centred philosophy of care. 5) To contribute to understandings of the ability of PCC to mitigate impediments in LTRC and address suboptimal dementia care. 6) To positively affect the living and working situation within LTRC through the production and dissemination of knowledge in relation to PCC.  Dissertation Overview In this chapter I have introduced the study detailed in the next nine chapters by presenting its background and significance. This chapter has also set out the research problem, study implications, its purpose and objectives. In Chapter 2, I present a review of the relevant literature to provide context for this investigation. Chapter 3 presents the conceptual framework and the overall research design and methodology are detailed in Chapter 4. Study findings are detailed in four chapters. Chapter 5 presents five vignettes %."  ! based on the residents I encountered during fieldwork. In Chapter 6 I describe the vital role that safety plays in the culture of care, shaping the lives of the people who live and work at Cedar Grove. Chapter 7 focuses on the significance of relationships for members of the care culture. The final findings chapter presents data on unstructured activity and social engagement, providing insights into how people at Cedar Grove found meaning in their dayto-day life. Chapter 9 presents a discussion of this investigation’s findings. The final chapter in this dissertation provides its concluding remarks and study implications.  %%"  !  CHAPTER 2: REVIEW OF SELECTED LITERATURE " As this literature review demonstrates, there is considerable theoretical research on the need for and potential value of a person-centred approach toward improved longterm residential care. My review of this literature began formally with the initial research proposal, was expanded during data generation, and finalized in the data analysis and writing stage of this dissertation. As an inductive investigation, emergent findings compelled me to broaden the scope of this literature review into research areas that I had not anticipated at the outset of this study. The purpose of this review is to present a comprehensive summary and critical analysis of the gerontological literatures which broadly pertain to aging, dementia, longterm residential care, and person-centred care. I examine a body of literature that provides the theoretical foundation of this study, while attempting to identify gaps in the research and underscoring the need for this and future studies in the field. The main body of work considered spans the years 1995-2012. However, I also consider influential texts and seminal works from earlier periods. Keywords for this review include dementia, dementia care, Dementia Care Mapping, personhood, long-term care, person-centred care, relationship-centred care, biography, culture change, self, social care, special care units, meaningful activity, ethnography, critical ethnography and critical gerontology. This chapter opens with discussion of the social construction of dementia and its relationship to traditional long-term care. Next, I review research devoted to the transformation of LTRC, focusing on discussions of the role of personhood, person%&"  ! centred care (PCC) theory, and culture change models that seek to implement personcentred philosophies of care. This is followed by an examination of the research on the challenges of applying person-centred theory in care practice. Key facets of PCC practice developed here pertain to communication skills training for carers and the use of biography to facilitate staff-resident communications in LTRC. I then review research on staffing levels, quality of care and quality of life, which lays the groundwork for a review of the conceptual strengths and limitations of the concepts of personhood and PCC as they are addressed in the research to date. Specifically, I look at research on embodiment, the physical environment, agency, and relationship and how each is considered in relation to a person-centred philosophy of care. This is followed by a review of the literature on ethics and ethical relationships in formal care settings. The final section addresses the gerontological literature on issues of social inclusion and social exclusion in LTRC and looks at notions of successful aging, activity, and meaningful activity in the context of dementia. This chapter concludes with a summary of the selected literature reviewed here.  Problematizing Traditional Care The literature contains many ways to conceptually approach long-term residential care. A traditional approach, often described as biomedical, has dominated the field and more recently social constructionist approaches, such as through the concept of personhood, have been influential. In the Foucauldian sense of problematization (Foucault, 1998), the next few paragraphs are devoted to how and why traditional approaches to long-term care are critiqued in gerontological research. I look at how %'"  ! “’things’ came to be” (Bacchi, 2012, p. 7) in dementia studies. This exploration sets the stage for a critical review of the concepts of personhood, person-centred and relational care, and certain approaches that have become influential in the field. That traditional approaches to LTRC are failing to meet standards of care and quality of life, particularly for persons with dementia, is at this point in history well established (Moyle, Venturto, Griffiths, Grimbeek, McAllister, Oxlade & Murfield, 2011; Popham & Orrell, 2012). Expectations of the demographic shift toward an aging population in industrialized nations, the social, economic and political consequences of a burgeoning “third age” and “fourth age” (Gilbert, 2006) have raised fundamental concerns around how best to meet the needs of a growing portion of the population in relation to LTRC. Contrary to popular fear mongering that typically surrounds this shift in demographics, especially around dementia, research points to both the need and opportunity to participate in a more positive trajectory for LTRC. Gilbert (2006) comments on a new dimension of today’s aging population, namely, a general resistance to complacency: “It holds higher aspirations for standards of living and life opportunities in later life than any prior generation and possibly any generation to come” (p. 75). This social force and concomitant political power possessed by future cohorts that Gilbert (2006) alludes to maps the multifaceted terrain of LTRC. Optimistically, research on aging in general and LTRC in particular, suggests potential for significant change. The literature shows that current conceptions of dementia have extensive sociocultural roots. The etymology of the term “dementia” actually dates back to the 1st century A.D. and stems from the Latin word demens, which means to be out of or to have lost one’s mens or mind (Aquilina & Hughes, 2006). The ramifications of the word  %("  ! “dementia” on the subjective experience of the disease are varied. Since this disease was first described, it has become increasingly prevalent in thinking about individuals who reach old age. In our consumer driven, youth oriented societies, older adults face discrimination not only because of negative conceptions of old age—assumptions about older adults’ lack of productivity and corresponding burden on society (Twigg, 2004)— but also because of a growing and pervasive fear of Alzheimer disease (AD). Foucault’s (1963/2003) work on the historical origins of biomedicine and dominant social constructions around disease is important to this discussion. Foucault (1963/2003) outlines how, with the development of modern medicine, the scientific or “empirical gaze” (p. xv) functioned to construct a language of supreme power or authority over individual bodies. The contention that “one could at last hold a scientifically structured discourse about an individual” (Foucault, 1963/2003, p. xv) has important ramifications for individuals who are deemed sick or incompetent, and helps explain the objectification of people with dementia. In Western cultures, the medical gaze has helped produce a relatively unproblematized linking of age and dementia, what might be considered in terms of the normalization of the disease that is perhaps one of the most noteworthy features impacting the ways in which dementia is socially constructed. Often, media attention and public concerns about dementia and dementia care centre on issues of safety. Dewing (2006) suggests that we live in a world that is increasingly “more risk-averse and more litigious and yet one where human rights are supposedly of increasing importance in social and legal decision-making systems” (p. 245). Discussions of safety and risk figure prominently in dementia care research and present particular challenges in relation to freedom, personal choice and autonomy  %)"  ! (Torrington, 2007). Parker (2001) warns that efforts to support social practices that affirm personhood are in danger in the context of an increasingly risk-averse culture led by a growing bureaucracy. Dementia has been called the “disease of the century” (Leibing, 2006, p. 250). Of the various forms of dementia, AD has received by far the most media and public attention, and its notoriety has been shaped by overwhelmingly pessimistic depictions of older adults and the impact of dementia on the individual and their families. It is this reality that has led people with the disease, their families, as well as researchers and practitioners, to critically assess the current conception of AD and to bring attention to its foundation in the prevalent ageism of post/industrial societies. This work helps researchers to understand the powerful negative impact of the biomedical model on the illness experience of AD and dementia more generally.  Transforming LTRC The Role of Personhood Questions of the “essential ingredients of a person” (McLean, 2007b. p. 40) have long been debated by bioethicists and philosophers and are prevalent in the gerontological literature on dementia. In the realm of dementia studies, responses to this question have serious implications for understanding how dementia is constructed and managed in society. The prevalent narrative of dementia prioritizes cognitive function/ability and suggests that once diagnosed, the individual ceases to exist as a person. Given that as of 2010, more than 35.6 million people worldwide live with a  %*"  ! dementia with projections of 115.4 million by 2050, there is an urgent need to positively impact the master narrative of dementia (Alzheimer’s Disease International, 2010). In these discussions, the scholarly work of the late Tom Kitwood continues to be highly influential. Kitwood brought the concept of personhood to the field of dementia studies and it is with his work that thinking about personhood in dementia is most closely associated (Brooker, 2004). Kitwood’s (1994/2007; 1997) social-psychological theory of personhood, which is central to person-centred care (PCC), was formulated to address what he perceived as the deficiencies that exist in conventional approaches to dementia care. Much of the impetus for a research on personhood comes from his recognition that, in the literature and in practice, there was little recognition of the subjectivity of the person with dementia. Kitwood’s work helped spark the “personhood movement” that emerged in the 1980s and took root in the 1990s in reaction to the extraordinarily pessimistic view of dementia that dominated the field of dementia care studies at the time (Leibing, 2006, p. 254). Since the 1990s, there has been a large body of research that grapples with Kitwood’s philosophical and practical approach to supporting the wellbeing of people with dementia, particularly those living in institutional settings. Leibing (2006) suggests that personhood is raised as an issue for forms of human life or particular human beings, such as fetuses or for some people with a disability because they are unable to speak on their own behalf. Definitions of personhood can generally be divided into two categories: 1) the belief that personhood relates to an individual’s possession of specific capacities, or 2) that personhood is socially based and relates to a human being’s position within a moral community (Baldwin, Capstick, Phinney, Purves, O’Connor & Chaudhury, 2007). When Kitwood was developing his  %+"  ! theory, the former understanding of personhood was dominant. However, to the extent that Kitwood’s work confronted a biomedical equation of individual capacity (cognitive ability) and with the person (Baldwin et al., 2007), it set out to counter the dominant capacity-based view with a more socially grounded understanding of personhood. The “turn to personhood” (Leibing, 2006) and interest in therapeutic and relational importance of the care context went against the legacy of the Enlightenment and challenged the influence of philosophers Descartes and Locke, among others, who set the foundations for modern individualism in a prevalent mind and body split, i.e., the separation of cognitive and biological functions in which the former (thinking or the mind) are granted superiority (Hughes et al., 2006; Kontos, 2004; Matthews, 2006; McLean, 2007b; O’Connor et al., 2007). The dominance of a capacity-based view might be seen as the source of much of the bleakness that surrounds diagnosis and care practice as it is rooted in neuropathology and Western medicine, with its preoccupation with treatment and cure (Herskovits, 1995). A diagnosis of dementia is considered to be synonymous with a reduction in the capacity to make decisions that sets the individuals apart from society: through diagnosis, “the brain and mind act as a source of difference” (Naue & Kroll, 2008, p. 26). When one loses the ability to reason, one loses the self—or so this dominant outlook has conditioned us to believe. The assumed loss of self is perpetuated through the workings of a medical model that locates “symptoms” in, for example, changes in an individual’s personality, behaviours, along with subjective complaints, and low scores on cognitive tests. It is a product of the “neuropathology of the disease” (Sabat, 2006, p. 287). In our society, individual memory might be considered the greatest requirement or evidence of  %,"  ! the self. An assumed loss of self has been noted as the most horrifying understanding of dementia (Aquilina & Hughes, 2006; Bastings, 2003; Crisp, 1999; de Medeiros, 2005; Herskovits, 1995). The Role of Person-Centred Care Since the late 1980s or early 1990s, the literature reveals that researchers and practitioners alike have increasingly sought alternatives to traditional biomedical care models in the form of person-centred care. This imperative has contributed to the spread of PCC models that emphasize both a more positive conceptualization of dementia and the importance of social processes, such as the impact of the creation of a positive social milieu on health, well being and quality of life in the LTRC context. Although Kitwood’s (1997) emphasis was chiefly based on the psychological domain of care, the promotion of personhood as the principal aim of his conception of PCC extended to interpersonal, social aspects of care (Baldwin & Capstick, 2007b). “We are social beings, and the greater part of most people’s lives takes place in relation to collectives of some kind” (Kitwood, 1990/2007, p. 275). Persons with dementia exist in a network of relationships that are created and maintained through interactions with others. In his words, personhood is “bestowed upon one human being, by others, in the context of relationship and social being” (Kitwood, 1997, p. 8). Challenging a prevalent “neuropsychiatric model of dementia,” Kitwood offers a “dialectical explanatory model of dementia” that shifts the focus solely from disease process to the interplay of brain disease with psychosocial factors (Kitwood, 1997; Downs, Clare, & Mackenzie, 2006, p. 245). Dementia is a neurological impairment, the experience of which is greatly influenced by one’s psychosocial environment. The view that dementia is manifested through a %-"  ! dialectical process, that it is socially constructed, broadens the focus to include not only persons with dementia but also to carers (as well as all others with whom the person interacts). As Gilmour and Brannelly (2010) suggest, attending to personhood also involves a change in status for the carer away from “an anonymous, interchangeable manager of behaviour” to consideration of a carer “as a reflexive developed individual” (p. 242). This emphasis on interpersonal relations rather than disease processes obliges carers to reconsider their role. Traditional care that tends to focus on rationality serves to undermine personhood by ignoring the fundamental human need for social connection and desire to be treated as a unique, complex individual. Traditional care often produces a state of what Kitwood (1997) refers to as ill-being in the person with dementia. The diagnosis and subsequent medicalization of individuals too often places those with dementia in a process/system that undermines their social being or personhood (Kitwood, 1997; Lyman, 1989; Sabat & Harré, 1992). Kitwood (1997, 1998/2007) is careful to point out that, although elements of care practice can serve to undermine personhood and even accelerate dementia, personhood-detracting care is not necessarily done with malicious intent by carers. Rather, poor care practice is often embedded in and perpetuated by a given organization or care culture, through particular beliefs, values and behaviour patterns. In this schema, a carer becomes acculturated to ways of caring with the result that what once might have seemed inappropriate or misguided to a person, over time becomes the natural, assumed way of doing things. In this light, a care culture operates as a system of taken-for-granted components of care practice. Kitwood (1997) referred to personhood detracting elements of practice, commonly found in formal settings, as evidence of an organization’s  &."  ! “malignant social psychology” (MSP) (Kitwood & Bredin, 1992), which he operationalized through Dementia Care Mapping (to be developed in Chapter 4). Kitwood’s thinking about PCC encourages a departure from task-oriented, custodial care that prioritizes “bed-and-body work” (Gubrium, 1975/1997) and movement toward a set of practices referred to as “positive person work” (Kitwood, 1997, p. 89). Linking the personhood of residents, their families, and care staff, these practices can be understood as opposite to MSP practices. It is through the recognition of the network of social relations experienced by the person with dementia, in addition to personal histories and preferences that carers might better understand how in their work they might either add to, or forestall, the progression of dementia. The value of this perspective for carers is that despite the absence of a cure for dementia, there is still much that can be done to improve the quality of life for people with dementia and the overall culture of care. Research on PCC suggests that carers can work to forestall or eliminate a premature social death for persons with dementia (Brannelly, 2011; Leibing, 2006). Culture Change Models Although PCC is recognized to be difficult to achieve in practice (Brooker, 2004; Dewing, 2008), the influence of person-centred orientation over the last 20 years has been considerable and has been used to support what has been called a “nursing home culture-change movement” (Rahman & Schnelle, 2008). Dawn Brooker’s (2004) statement that in the United Kingdom, PCC has become synonymous with or a “shorthand phrase” (Brooker, 2007, p. 15) for a good quality of care illustrates the growing popularity of PCC to address public and professional concern for more appropriate, humane care for LTRC populations. In 2012, this perhaps now not-so-new direction has &%"  ! produced a wealth of scholarship and opened up previously unrecognized possibilities for understandings of the subjective experience of dementia and for care practice. Efforts to promote person-centred practice have taken several forms; although there is no agreed upon definition of PCC, nor consensus in the literature regarding specific components of PCC, many of these approaches that claim to be culture change models share the same tenets and guidelines. With its basis in PCC, culture change is complex and dynamic in nature, and has been described as: The process of moving away from a traditional nursing home model, a system that is unintentionally designed to foster dependence, [toward] a regenerative or resident-focused model that increases the residents’ autonomy and sense of control. It is seen as a continual process of growth and development and requires systematic change at the individual and organizational levels. (Brawley, as cited in Fazio, 2008, p. 158) Examples of these models in Canada and the U.S. include the Eden Alternative (Thomas, 1996), and later The Green House Project (Thomas, 2003), The Pioneer Network (Fazio, 2008; Lechner, 2003) and Gentlecare (Jones, 2009). The Eden approach—one of the best known and a key influence on my research site—maintains that boredom, loneliness, and helplessness are at the core of the suffering experienced by “Elders” in LTRC (Eden Alternative, 2007). William Thomas (1996), creator of this model, describe these “three plagues” of institutional life as the outcome of a focus on medical treatment rather than on “care,” or life. The Green House Project—also founded by William Thomas (2003) is fundamentally different from other models that function within existing institutions through its aim to transform institutional care from the ground up by abolishing “the  &&"  ! institution,” offering in addition to a focus on the human habitat of Eden, smaller living situations with greater resident contact, technological advances for charting and economic benefits through better management than current nursing home care. Gentlecare is designed to offer “a prosthetic life care system” designed to meet the needs of “clients” with dementia (Jones, 2009, www.Gentlecare.com/whatis.html) and The Pioneer Network (http://www.pioneernetwork.net) stresses interpersonal relationships and community (Fazio, 2008).  Applying Theory in Practice The literature identifies key challenges for the application of PCC theory in care practice. In this section, I review the research that identifies the practical and conceptual limitations of PCC. Within these discussions, the need for specialized skills staff training and questions of adequate staffing levels to accommodate PCC principles and to support residents’ quality of life emerge as significant issues that impede implementation. Although personhood and PCC as conceived by Kitwood has been at the vanguard of dementia research and transformations of dementia care, his work and that of his followers has been critiqued. More recent considerations of PCC acknowledge the transformational role this emphasis has in the field, but suggest that conceptually it has important limitations. In a comprehensive analysis, O’Connor and her colleagues (2007) stress the “intuitive appeal” of personhood, highlighting a lack of research into key dimensions (subjective experiences, immediate interactional environment and broader socio-cultural context) that would help link personhood theory with practice. Dewing (2004) also connects the challenge of applying theory in practice and contends that nurses &'"  ! have yet to fully comprehend “personhood” as a concept. Dewing argues that this confusion is a hurdle in PCC practice. For similar reasons, McLean (2007b) warns against the “uncritical acceptance of person-oriented approaches” (p. 36). Part of McLean’s concern relates to questions of process and a failure of research to examine how and under what conditions PCC is most likely to benefit resident populations. Nolan, Davies and Brown (2006) assert that it is current interpretations of PCC that are problematic, rather than its initial intent (by Kitwood, Brooker and others), now “lost in common usage” (p. 48). The quest to facilitate turning person-focused philosophies of care into personcentred practice is the focus of a significant amount of research in the field. Several studies identify the complexity of PCC itself as a primary hurdle to implementation and see this as a tremendous challenge faced by an organization (and thus, staff) to effectively carry out PCC (Aberdeen, Leggat, Barraclough, 2010). Innes (2009) points out that Kitwood’s vision for PCC practice “places huge demands” on carers: “Carers paid and unpaid, are often expected to perform physically strenuous, often ‘dirty’ work, while engaging in a positive manner with the emotional needs and demands of the individual they are caring for” (p. 49). The suggestion here is that PCC requires carers to be highly skilled in areas that extend beyond those of traditional front line care, which in turn requires organizations to attend to the unique needs of carers to deliver PCC and to facilitate appropriate responses to meet the unique needs of residents with dementia (Hughes, Bagley, Reilly, Burns, Challis, 2008). To further explore the challenges of applying PCC theory in practice, I consider research on communication and dementia care that has emerged as instrumental in the  &("  ! quest to humanize care. Specifically, I examine research on communication skills training and the use of biography to facilitate meaningful social interactions between staff and residents and more generally to support PCC practice. Communication Skills Training in Person-Centred Dementia Care The need for specialized staff training and ways to foster effective communication during care, more specifically, have received considerable attention. Kitwood’s vision for the transformation of a care culture promotes the need for staff education focused on specialized communication skills toward relational care (1993/2007), yet this aspect of his work was not fully articulated by the time of his death (Baldwin & Capstick, 2007b). It is through our communication with others that we often convey respect, dignity and connection. Research is developing in this area. A recent study by Savundranayagam, Ryan, Anas and Orange (2007) is an example of research that draws on the concept of personhood to examine communications (verbal and non-verbal) between staff and residents as a key aspect of foregrounding personhood within institutional care. These researchers found that “personhood-based” language that entails simplified and repeated language (instead of complex language) has a positive impact on staff interactions with residents, changing perceptions of both: they suggest the benefits of targeted communication training for carers (p. 58). Adams and Gardiner’s (2005) study focuses on the issue of communication techniques and social practices within care triads. This study examines communication processes (verbal and bodily expressions) that supports the involvement of the person with dementia and which contributes to his or her ill/wellbeing, aiming to lessen “disabling dementia communication” (Adams & Gardiner, 2005, &)"  ! p. 200). These researchers, and others, stress the need for innovative educational approaches that stress critical thinking around dementia care practice to empower carers to have a voice in the day-to-day care of residents (Ingersoll-Dayton, Schroepfe, Pryce & Waarala, 2003). Aberdeen and colleagues (2010) suggest the value and need for this type of training in relation to staff understandings of, for example, challenging behaviours associated with dementia (to be developed below). However, these researchers also recognize that the expectation that staff have specialized dementia knowledge “does not reflect the reality of the workplace” whereby staff are already burdened with documentation (to insure funding) requirements that do not necessarily reflect the demands of the job (Aberdeen et al., 2010, p. 144). Burgio and colleagues (2001) also explore communication skills training to improve care. These researchers employed a communication-memory book training intervention and found that nursing assistants who had received communication skills training talked more and used more positive statements during care routines than those staff that had not receive this specialized training. Another key finding in this study was that these positive social interactions did not necessitate the investment of more staff time; rather, they used the time they had during their normal routine in a way that was personhood supporting. This study’s focus on the use of the memory book to aid communication between staff and residents is part of a large body of research that is focused on the use of resident’s biographical information to contribute to more personalized care and ultimately to achieve more balanced dementia care.  &*"  ! Resident Biography The potential of biography to contribute to good dementia care has been identified in a significant number of gerontological studies. A focus on biography in dementia care literatures might be seen as a response, in part, to the neurodegenerative effects of dementia which results in a person with the disease experiencing increasing difficulty composing and sharing life stories (Baldwin, 2005; Gillett 2002). Biography is key to achieving PCC: Kitwood (1997) advises that, “having a sense of continuity with the past, and hence a ‘narrative,’ a story to present to others” (p. 83) is a collaborative effort: “to some extent identity is conferred by others, as they convey to the person subtle messages…” (p. 84). Similarly, Baldwin (2005) advocates that others must help in the coconstruction of a meaningful and positive narrative for persons with dementia. When we begin to have difficulties with recall and word finding or with organizing and relating our experiences in intelligible ways, we require the participation of others (i.e., staff) to help tell our stories. According to Ryan and Schindel Martin (2011), the story of the person with dementia is an important means to sustain the self, while also sharing important aspects of his or her personal identity with others. The social nature of biography is a key aspect of biographical approaches to dementia care. Despite the organizational and institutional difficulties raised by it, research has found a variety of positive outcomes associated with the use of a biographical approach—particularly around increasing the participation of family in residents’ care. Because these approaches draw on the personal expertise that families and/or significant others share with residents, they provide a means to involve friends and relatives in the care process (Gibson, 2005). The involvement of family in LTRC has been identified as a  &+"  ! missing ingredient in traditional models and is seen as vital to achieving optimal, individualized, dementia care (Reid et al., 2007). Research has also shown how agitation and the display of other so-called dementia behaviours have decreased in settings that use biography. This is important because the dominance of the medical model in consideration of dementia-related behaviours means that alternative considerations have typically been sidelined or dismissed altogether. Graneheim and Jansson (2006) point out that it is critical to incorporate residents’ personal histories into understanding challenging behaviours within institutional settings. With personal histories in mind, carers might then interpret residents’ “disturbing behaviour” as a “way persons with dementia express their story and maintain their self” (Graneheim & Jansson, 2006, p. 1397). This capability is connected with other demonstrated abilities of biography to help mediate the negative impact of institutionalization by; personalizing care, promoting relationships, and by helping staff to re-interpret challenging behaviours and thereby offer non-pharmacological alternatives in dementia care (Beach & Kramer, 1999; Kolanowski & Rule, 2001; Paterniti, 2003; Thompson, 2011). Biography has also been shown to facilitate staff-resident communications, inform care plans, and create opportunities for staff to support the identity of persons with dementia (Chaudhury, 2002a, 2002b, 2008; Dobbs, Eckert, Rubinstein, Keimig, Clark, Frankowski, & Zimmerman, 2008; Gibson, 1994, 2005; Hagens, Beaman, & Ryan, 2003; McKeown, Clarke, Ingleton, Ryan, Pepper, 2010; Ryan, Clark & Spadafora, 2005). Other related practice implications identified in the literature include a more hopeful outlook on living with dementia, increased involvement of the resident in his or her care, and the potential  &,"  ! for staff empowerment through creative engagement and interaction with persons with dementia, and an overall decrease in residents’ social isolation (Allen-Burge, Stevens, & Burgio, 1999; Brodaty, Draper, & Low, 2003; Clarke, Hanson, & Ross, 2003; CohenMansfield, 2000; Heliker, 1999). The goal of biographical approaches is to enable carers to translate residents’ life stories into care interactions (Moos & Björn, 2006). Biographical approaches include the use of personal narratives, memory boxes, autobiography, life story, and life history. The majority of these approaches is reminiscence-based and focuses on the use of tangible, concrete records of residents’ life histories. Research on biography reveals that biographical approaches to dementia care show great promise in their ability to facilitate a fundamental shift in how care is given, received, and shared in the context of LTRC. However, this research also shows that to be successful, staff should be given the time and space to support residents’ identities and need to be trained to work with residents to make biographical materials meaningful. Barnes and Brannelly (2008) suggest the value of narrative to enable personalized, equitable care, and Baldwin’s (2008) concept of “narrative space” describes how care settings might foreground residents’ identities as “narrative beings” through the use of their personal stories in everyday practice. Baldwin (2008) suggests that this “narrative space”— a nexus of “personal, interpersonal and the institutional/structural” (Baldwin, 2008, p. 224) aspects of care—is important to empowering persons with dementia. Carers help move the marginalized person with dementia forward, supporting her/his identity and social inclusion through “citizenship as practice” (Baldwin, 2008, p. 224). Yet, although meaningful communication has been identified as vital to an optimal  &-"  ! quality of residential care (Beach & Kramer, 1999), the literature on specialized training and the innovative education needed to enhance person-centred approaches, for example in the use of biography, illustrates the severe challenges that exist in LTRC to achieve this end. Innes (2009) makes an important point when she states that the growing use of migrant (international) workers to care for older people in Western countries creates challenges in practice. Innes, and others, have pointed to language (and literacy) barriers that may exist between residents and direct carers, which negatively impact the ability for meaningful (verbal) interactions in care. With respect to biography, this issue presents opportunities in research to develop means to share vital biographical information in diverse ways, beyond solely text-based accounts and verbal interactions, of particular relevance in dementia care. Findings from my Master’s thesis (Kelson, 2006) identified the value of using personal photographs in a visual presentation of residents’ life stories to impart residents’ biographical details to care staff. Increasingly, technological, multimedia approaches are used as tools for life story work; video terminals, iPads and mobile phones for example, lend themselves well as alternate formats for the collection and sharing of biography (Cohene, Baecker & Marziali, 2005; Thompson, 2011). To promote person-centred practice, ways to support staff to engage with residents through meaningful communication and relationship is fundamental. These applications have the potential to provide carers from diverse socio-cultural backgrounds, who might have a range of comfort levels with the dominant language, an important means to foster their inclusivity in the lives of residents.  '."  ! Challenges to Culture Change in LTRC Research on staffing levels, quality of care, and the quest to achieve the best possible quality of life (QOL) for people living in long-term care represent key areas of practice that challenge an organization to transform practice. As this section will illustrate, what actually constitutes a good quality of life in LTRC has been hard to define and for persons with dementia in particular, is not well understood (Moyle et al., 2007). Staffing Levels and Quality of Care A considerable amount of research in LTRC focuses on the relationship between staff time and quality of care and the issues that surround these concerns. Understaffing in Canada, like in many other Western nations, is epidemic (Banerjee et al., 2008). This is a significant challenge to improving dementia care, because, as McGregor and colleagues (2006) found, there is a strong relationship between adequate staffing levels and better care in British Columbia LTRC facilities. Staffing levels represent a critical challenge, as the quality of residential care is dependent on front-line workers, such as healthcare assistants or care aides, the people who provide the majority of care (Smith, Kerse & Parsons, 2005). Kitwood’s (1997) research addressed the necessity of a supportive organization to set the tone and provide the material resources necessary to enable a culture of care to deliver PCC. Kitwood (1997) speculated on the quality of care that exists in settings where the staffing levels are good and its relationship to good care. Far from current ratios, Kitwood envisioned the equivalent of one carer per three or four residents. Interestingly, he suggests practice situations where although the working conditions might reflect this optimal ratio, there was still evidence of less than optimal care, such as '%"  ! superficial social interactions. This observation lends support to Kane’s (2004) assertion, that “levels of staffing, expressed as bodies per residents, may not tell the whole story” (p. 253). However, in general, research points to a link between optimal care and higher staffing levels (Canadian Union of Public Employees, 2009; McGregor, Tate, Ronald, McGrail, Cox, Berta & Broemeling, 2010; Schnelle, Simmons, Harrington, Cadogan, Garcia, Bates-Jensen, 2004). For example, in a widely cited U. S. study by Schnelle and colleagues (2004), they recommend that 4.5 hours of direct care, per resident, per day is required in order to improve the quality of LTRC. This goal differs greatly from the most recent Ombudsperson Report (British Columbia. Office of the Ombudsperson, 2012) that states that care facilities in the province are working toward 3.36 hours of direct care hours for residents. There is also another component to this equation that relates to which care roles are best able to improve care and the life of residents. Specifically, is care improved through an increase in nursing staff, leisure staff, social workers, or medical staff? There is also debate in the literature about whether an optimal number of direct care hours exists that all facilities should work toward to ensure quality care for the increasingly complex care needs of resident populations. In short, fundamental questions in this area query which staff roles have the greatest potential to improve care and whether or not an optimal ratio of staff to residents exists. Murphy’s (2006) research sheds light on these questions. Whereas many studies advocate increased direct nursing care, Murphy (2006) found that all members of the care team (e.g. RN, LPN, RCA) contributed, in unique and shared ways, to the quality of residential care. Murphy also asserts that minimum levels of staffing are needed to avoid  '&"  ! a number of adverse care outcomes (e.g. physical restraints, pressure ulcers). Zhang and Grabowski (2004) study of U. S. reforms in over 5, 000-nursing homes add further insight to this discussion. These researchers identified a significant increase in staffing levels from 1987 to 1993. However, they also found that this increase was associated with better outcomes in only those facilities that were the most undersupplied and had the least favourable ratios. This study then reveals that the relationship between increased nursing staff and improved quality of care is not necessarily clear-cut. Despite agreeing with the general rule that “more is better,” Kane (2004) maintains that many studies are challenged to identify a significant correlation between more staff and improved care (p. 252), given the inconsistencies in, for example, staffing data and units of analyses used across studies. Moreover, Kane (2004) supports the broadening of measures of staffing beyond nursing to include other carers, like activity staff. Reid and Chappell (2003) offer a rare study that explores staff-resident ratios in relation not to nursing staff, but rather, to activity staff in special care units. They found that even a modest increase in the ratio resulted in appreciable benefits to SCU residents in terms of decreased agitation and improved quality of life. When considering the notion of person-centred care, an additional problem emerges: staffing levels are often determined in relation to custodial aspects of LTRC. McLean’s (2007b) and others’ research on PCC suggest the need to consider staffing levels not just in relation to instrumental tasks, but also with respect to care philosophies. McLean’s (2007b) study compares care in a traditional and non-traditional setting and she details the internal and external barriers to quality dementia care. Namely, she identified internal caring practices that suggested the “superiority of person-preserving  ''"  ! care” over instrumental approaches to support residents’ personhood (McLean, 2007b, p. 221). She notes that care of the person requires that carers possess the attributes of patience, flexibility, and other skills needed to engage in relationship-based care. McLean (2007b), Banerjee and colleagues (2008), and others describe this type of care as labourintensive. Citing the potential resource limitations that impede transformations in practice, Lopez (2006a) contends that at present we don’t “really know how, or whether, culture change allows nursing homes to transform nursing home care with existing levels of staffing” (p. 59). This literature suggests that the ability for staff to care for the “person” depends not only on the skills of the individual carer, but on organizational support and factors beyond the level of the organization—to external forces—historical, political cultural, economic (McLean, 2007b). Defining Quality of Life What the studies of quality of care and staffing issues discussed above do not capture is the vital yet nebulous dimension of LTRC known as quality of life. Research on QOL in LTRC reveals the challenge of definition. This absence of an agreed upon definition, or broad definition of quality of life, is considered to have a detrimental impact on assessment (Kane, Kling, Bershadsky, Kane, Giles, Degenholtz, Liu, & Cutler, 2003). It seems that although QOL is increasingly considered as an outcome in dementia research and practice, and has been used to guide economic decisions in residential care (Moyle et al., 2007), it remains an intangible and elusive concept (Crespo, de Quirós, Gómez, & Hornillos, 2011). Evaluations of quality of life began with the work of Lawton (1994, 1997) who used a combination of subjective and objective measures in the following interrelated '("  ! areas: psychological well-being, behavioural competence, the physical environment and care provision, and perceived quality of life (cited in Torrington, 2007). Although there is a general consensus that LTRC must promote a good QOL for residents (Kane et al., 2003), there is comparatively little literature focused on QOL in LTRC (Moyle et al., 2011). There is also a dearth of research focused on how residents’ diversity and social locations impact his or her experiences of life in LTRC. Reasons for these gaps in knowledge include the challenges that exist in defining, measuring, and studying QOL in residential care (Kane, 2003). One evaluation tool that has been altered in the quest to better assess QOL in LTRC is the RAI/MDS. First iterated in 1988 (Rahman & Applebaum, 2009), the Minimum Data Set (MDS) is a standardized resident assessment instrument (RAI) that has become ubiquitous in the industry; it is used in nearly every U. S. nursing home (Rahman & Applebaum, 2009) and many Canadian LTRC facilities (Kontos, Miller, & Mitchell, 2009), including the research site of this study. The intention of the RAI/MDS is to facilitate improved, individualized care and is designed to operationalize residents’ care plans. However, this standardized assessment tool has been critiqued for its inability to capture residents’ personal preferences (Kane et al., 2003; Kontos et al., 2009). The latest version (3.0, in 2010) inserts a number of changes designed to address such critiques. For example, in an attempt to better include residents in their own care the latest version requires that staff conduct resident interviews (with scripted questions) (Rahman & Applebaum, 2009). Still, while there are many strengths of the RAI/MDS tool around physical care and the implementation of best-practices across sites, major criticism of this tool’s most recent version has been its failure to include important QOL  ')"  ! psychosocial domains (such as dignity, enjoyment, or comfort) and the limited attention it pays to residents’ sense of security and the importance of personal relationships (Rahman & Applebaum, 2009), or whether staff honour residents’ rights (Koren, 2010). In PCC, these domains are considered vital in order to evaluate a resident’s social needs and tap into ways to ensure an optimal quality of life.  Expanding Concepts of Personhood and PCC—Conceptual Issues to Date In recent years, research on the conceptual limitations of personhood and PCC theory that may impede culture change has increased because of the observed difficulties in application of PCC principles on the ground. In this section, I look at these conceptual limitations in relation to embodiment, the physical environment, agency, and the contributions of relationship-centred approaches. Embodiment There is increasing interest in individuals’ bodily engagement in the world—or embodiment—as a vital aspect of personhood (Kontos, 2004; Kontos & Naglie, 2007; Phinney & Chesla, 2003). This perspective might be seen as a response to the Western (Cartesian) separation of mind and body whereby the experience of dementia is “explicitly not a bodily one” (Phinney & Chesla, 2003, p. 285). Twigg (2004) makes the point that feminists (characterized by a variety of debates and positions) have begun to take issue with recent accounts of the body, age and identity that fail to capture the whole person (i.e., mind and body). Specifically, Twigg (2004) observes a “revival of Cartesian dualism” (p. 62) in representations of dementia in some postmodern research that emphasizes discourse and culture and effectively rejects physiology. She sites Kontos '*"  ! (1999), Gibson (2000), and others as challenging these old dualisms and instead advancing the notion that the body is produced and reproduced through the dialectical relationship with the self. Therefore, the quest to support personhood in dementia care and humanize practice requires acknowledgement of the body as inextricably linked to the self. An appreciation in practice for a greater recognition of the ways that residents are embodied and engage in the world through a range of bodily acts and modes of communication is vital to person-centred practice. Kontos & Naglie (2007) suggest that “shared bodily experiences,” such as a resident and carer walking arm-in-arm or sharing a hug, opens the door to personal connections between residents and staff and contributes to more compassionate care. In terms of practice, a failure to appreciate embodiment as a component of personhood perpetuates cognitive understandings of personhood and unfairly disadvantages persons with dementia by failing to recognize the many ways of communication that are not language-based. The Physical Environment Another conceptual limitation addressed in the literature relates to the omission in PCC to include considerations of the impact of the built or physical environment on the well-being of the person with dementia. This is an area that is under-researched in dementia studies (Barnes, McKee, Parker, Morgan, Torrington, & Tregenza, 2002; Cutler & Kane, 2003). However, consideration of the built environment in the interests of culture change is vital, because “the person experiences living with dementia” within a particular context or experience “they do not experience themselves and the physical and social environments as separate, rather each is in relationship with the other” (Davis, '+"  ! Byers, Nay, Koch, 2009, p. 198). Research that has focused on physical environment has tended to focus on the use of design to reduce or eliminate “problem behaviours” rather than as a resource to support personhood (O’Connor et al., 2007). There are some exceptions to this: Thomas’s (1996) Eden Alternative touches on the reciprocal relationship between the physical environment and the psychosocial health of residents, and staff, when it suggests that, in addition to changes in care philosophy, organizational policies and practice, changes in physical design are important to support the development and maintenance of intimate relationships; changes in the built environment are conceived of as an “antidote to loneliness.” Examples of these changes that already contribute to quality of life in Eden include small kitchens that are accessible day and night to residents (versus an institutional kitchen) as well as the addition of “spa” rooms (versus shower room). Unfortunately, the evidence-based data supporting the value of physical environment on personhood is sparse. An exciting contribution to PCC research in the area of built environment is the recent addition of a physical environmental component to the Dementia Care Mapping (DCM) observational tool (Chaudhury, Cooke & Frazee, in press). Although recognized internationally for its ability to assess residents’ quality of life and the extent to which a person-centred approach has been implemented in a care setting, the most recent (8th) edition of DCM (Brooker & Surr, 2005) was still unable to assess residents’ behaviour, mood and engagement in relation to the physical and environmental features. Currently in the pilot stage, the addition of the physical component to the DCM tool incorporates Lawton's work on quality of life as it relates to environmental situations (Cooke & Chaudhury, 2012). This work underscores the interplay between social and physical  ',"  ! environments on the well/ill-being of persons with dementia and adds to the few empirical studies that demonstrate how and in what ways a PCC approach actually improves residents’ well-being. Importantly, it also adds to the small number of research tools that exist, as Edvardsson & Innes (2010) point out, to allow research to move beyond evaluations based on proxies to direct measures of person-centred practice. Agency A small number of researchers have explored subjectivity, the preservation of self (Sabat & Harré, 1992; Sabat, 2002a, 2002b) or “the subjective experience of personhood” (Nowell, Thornton, Simpson, 2011). This research begins to draw attention to the notion of agency. This research is vital to this study because its focus on agency challenges normative assumptions of disease, age and cognitive impairment. It relates to the proposition that the person with dementia is an active agent who continues to engage in the preservation of his or her selfhood (Downs, et al., 2006; Beard, 2004; O’Connor et al., 2007; Bartlett & O’Connor, 2007). Research indicates that persons with dementia employ a variety of strategies in an effort, for example, to sustain a connection with their self/identities (O’Connor et al., 2007): faced with dementia “People are resilient and tailor techniques when necessary” (Beard, 2004, p. 426). Phinney (2008) points out that persons with dementia might embrace health promoting behaviours, such as changing their diet or level of physical activity, working harder at tasks, or perhaps asking for assistance from others to help them remain involved in activities they find meaningful. Other research in this area looks at how persons with dementia employ narrative techniques and communication strategies to remain engaged in the preservation of self (Adams & Gardiner, 2005; Baldwin, 2005; Chaudhury, 2008; Paterniti, 2003; Sabat, '-"  ! 2006; Saunders, 1998a, 1998b). While most of the research on subjective experience and agency has focused on early stage dementia, McColgan’s (2005) research highlights the retention of agency even in the context of long-term care. Specifically, this researcher found that residents engaged in various acts of resistance (i.e. self-preservation) as they made an effort to exercise autonomy and choice. These included arranging furniture in common areas in particular ways (against the desires of staff) in order to accommodate their need for quiet reflection and to escape the gaze, and feigning sleep in order to detach from the routinized environment of the nursing home. While not focused explicitly within a long-term care setting, a recent study by Sabat and Lee (2011) on social cognition and the possibility of friendship in persons with dementia pointed to the ways in which people in a moderate “stage” of dementia independently initiated social interactions that defied what their neuropsychological test scores would suggest were possible. These researchers found that people diagnosed with dementia were able to “recognize and honor one another’s needs, supported one another in caring, tender ways, sought to be helpful to one another and found ways of expressing acceptance of one another” (p. 323). In an enlightening twist, they concluded that these individuals with dementia demonstrated supportive behaviours that could be described as in keeping with Kitwood’s notion of Positive Person Work— his objective for personhood-supporting staff-resident interactions. Relationship-Centred Care While early research and literature focused on personhood and PCC, more recently, recognizing the importance of relationship, specifically, the understanding that quality care must occur in the context of a relationship (Brooker, 2008; Kitwood, (."  ! 1990/2007, 1997; Parker, 2001; Vittoria, 1998), the use of language has shifted and models based on ‘relationship-centred care’ (RCC) are now emerging. Critics of policy decisions that have resulted in the widespread adoption of person-centred models claim that they are misguided because they focus to a large extent on the individual, subjective experience of dementia (McCormack, 2004; Nolan et al., 2006; Nolan et al., 2004; Nolan, Ryan, Enderby, Reid, 2002). In part, this criticism is leveled at Kitwood’s contention that personhood is the basis for PCC. McCormack (2004) points out that while the importance of relationship to PCC is undisputable, that it represents but one component of personhood (with context, place, and self being others) and concludes therefore that “relationship-centred care” is a more inclusive term (p. 33). Nolan and his colleagues (2002, 2004, 2006; Ryan, Nolan, Reid, Enderby, 2008) are perhaps most influential in the realm of relationship-centred approaches and suggest that the conceptual shortcomings of PCC is rooted in its inability to fully account for the “interdependencies and reciprocities that underpin caring relationships” (2002, p. 203). These researchers acknowledge the centrality of a respect for personhood to transform care, but call for a less individualistic understanding in dementia care that values interdependencies in the care context (Brown Wilson, Davies, & Nolan, 2009). They further assert that PCC not only fails to improve institutional care, but suggest it “perpetuates” poor standards of care by failing to consider the impact of both interpersonal processes and “intrapersonal experiences of giving and receiving care” (Nolan et al., 2004, p. 49). They propose the Senses Framework (Ryan et al., 2008) as a “more exciting and appropriate vision” (Nolan et al., 2006, p. 48). In addition to the person with dementia/formal carer dynamic, a key aspect of broadening the vision of care (beyond  (%"  ! PCC) as they describe it in this model, is the recognition of the network of relationships in which family plays a vital role in residents’ quality of life (Nolan et al., 2002; Nolan et al., 2004). A hurdle to the implementation of RCC, as with PCC, surrounds the challenge of reaching theoretical consensus in order to facilitate implementation in practice. In particular, it is difficult to pinpoint the conditions that actually produce and maintain positive relationships in care (Nolan et al., 2004). Some research suggests that instead of focusing on the differences between PCC and RCC, the two models can work in tandem with one another (O’Connor, 2008). For example, Dewing (2008) counters some of these critiques with claims that popular analyses of Kitwood’s work have oversimplified it and devalued the philosophical roots of PCC. Dewing (2008) contends that the philosophical underpinnings of personhood as relationship-focused, his promotion of Buber’s “I-Thou” mode of relating, and of PCC practice as “moral concern for others” has been marginalized (p. 11). This focus on intersubjectivity between carer and person dependent on the care, in this case the resident, marks a key site of interest and research on how best to transform formal dementia care. It also raises important philosophical concerns around the limits of humanist conceptions of subjectivity and individual agency. Adams (2008) takes the comparison a step further and not only warns against a polarization of approaches, he draws attention to continued limitations of both, suggesting that while both PCC and relationship-centred approaches have contributed valuable ideas to dementia care, both approaches suffer from a lack of focus on socio-economic and political factors that shape the experience of care for persons with dementia, their families, and carers.  (&"  ! Ethics in Person-Centred Care Of all the troubles that come to human beings, dementia is one of the most difficult to face, and one that presents some of the most intractable ethical problems. (Kitwood, 1998/2007, p. 155) As discussed, ethically-based relationships figure prominently in considerations of the transformation of organizational culture in LTRC. Foundational to personhood and PCC is the contention that persons with dementia, like those without, possess intrinsic worth and value as human beings (Kitwood, 1997; Post, 1995). While this may seem selfevident, older people are often objectified, even within the field of gerontology, which risks turning older adults and persons with dementia into objects of study in what has become a largely problem-based approach to aging (Herkovits, 1996; Katz, 1996; Twigg, 2004). Gerontological research informs societal discourses, theory, and practice and when we are not careful there is a danger of contributing to the dehumanization of persons with dementia through the way we understand the complex concerns that impact aging and the elderly. Leedham & Hendricks (2006) point out that gerontology has contributed to a normalization of aging as a period of physical decline and social withdrawal. Recent research argues for the need to counter a tendency to exclude individuals from the “’personhood club’” (Kitwood, 1997, p. 9) through consideration of the multifaceted nature of agency and ethical relations at play in research and practice. Ethics in dementia care is key to person-centred approaches because, as Hughes and Baldwin (2006) point out, “much ordinary care involves an ethical component, even if it is not recognized as such” (p. 9). A focus on ethics in dementia care challenges the dominant medical model and its continued influence on how dementia is perceived and  ('"  ! “managed” in the day-to-day lives of residents. The next few paragraphs discuss research on ethical relations and their ability to support good dementia care. They also look at challenges to the implementation of ethical ideals in practice. I/Thou and I/It Modes of Relating Kitwood (1997), Post (1995, 2006), Hughes and Baldwin (2006), and others draw on philosophical discussions of interpersonal, ethical relations to help theorize approaches to transforming dementia care practice. For example, Martin Buber’s (18781965) notion of the I-Thou/I-It relationship has influenced gerontological research by providing a vital theoretical perspective for considerations of personhood, relationship, and ethics of care. Kitwood (1997) suggests that Buber’s work is important to seeing personhood in relational terms and offering important connections through discourses based on “transcendental, ethical and social-psychological” accounts of personhood (Kitwood, 1997, p. 11). Kitwood’s conception of personhood is rooted in Buber’s notion of the “I-Thou” relationship: “a symbiotic relationship between caregivers and people living with dementia” (Baldwin et al., 2007, p. 177). Kitwood (1997) suggests that conventional practice is based on and perpetuates I-It encounters, which entails negative outcomes for both residents and staff. Without a true meeting, one based on openness, tenderness and acceptance, which is how Kitwood (1997) characterizes an I-Thou encounter, there is no true intimacy or relationship created between two active subjects (Buber, 1970/1996). Instead, these I-It ways of interacting negate the personhood of both parties and focus primarily on the tasks of care and the goal of getting the job done, and the receiving of care.  (("  ! Intentional and Non-Intentional Modes of Relating Research on ethical care practice has also looked to the philosophical writings of Emmanuel Levinas (1906-1995) to help understand the relationships that exist, or not, in care encounters (Greenwood, 2007; Greenwood, Loewenthal, & Rose, 2001; Lavoie, De Koninck, & Blondeau, 2006). Levinas’ thinking about intersubjective relationships offers an important contribution to our understanding of socially responsible care practice. It is significant to note that Levinas (1958/2009) critiques Buber’s work on modes of relating. For instance, Levinas challenges Buber’s emphasis on a level of reciprocity that is contained in an I-Thou mode of relating: “The position of the I … is not interchangeable with that of the Thou” (1958/2009, p. 72). Levinas recognizes the asymmetrical obligations that exist in relations between oneself and the “Other” (Hand, 1989/2009). This distinction has great relevance to understandings of dementia care practice. Rather than considering a relationship (between resident and carer) as being based on mutual acceptance, which is what Buber does (Greenwood et al., 2001), Levinas (1984/2009) stresses that our sense of responsibility toward the other arises from a responsibility for the Other. It entails a moral obligation. Lavoie and colleagues (2006) develop the philosophy of Levinas vis-à-vis an ontology of care, specifically, nursing care. These researchers assert that Levinas’ emphasis on the face of the Other, and the responsibility for others that occurs in practice when “face to face with another person, especially one in need…compels one to do something for the other” (Lavoie et al., 2006, p. 228). With reference to dementia care, McLean (2007a) argues that relational care is essential in the prevention of or resistance to more conventional instrumental care practices. To McLean,  ()"  ! dementia care is a “moral enterprise because it addresses fundamental human vulnerabilities, both of care receivers and their caregivers” (2007a, p. 369). Adding further complexity to Buber’s modes of relating, Levinas discusses the concept of the “non-intentional” (Levinas, 1984/2009). Whereas Buber’s I-Thou necessitates conscious consideration of the other, Levinas interprets this awareness as an obstacle to a true meeting (Levinas, 1958/2009). He offers instead the concept of the nonintentional, which Levinas describes as generated in a caring relationship in the moments prior to a conscious, or intentional, understanding of the other person, or the person as “other.” In dementia care, this view might help staff counter the dominance of biomedical evaluations of the person in care. A carer’s ability to be open to the value of nonintentional “pre-understandings” (Greenwood, 2007, p. 223), Levinas suggests, allows carers to overcome the powerful influence of labeling or social stigmatization. As Greenwood (2007) writes, “a person’s internalized view of another person can inhibit the possibility of allowing real individuality to emerge in a relationship” (p. 224). Goslinga and Frank (2007) note the relevance of the non-intentional to ethnographic research and suggest that Levinas’ basis for ethical (face-to-face) engagement with Others is applicable to the creation of new, ethically-based epistemologies. Specifically, they discuss how anthropology might be advanced through fieldwork that engages with “subjects,” relinquishes the power of the researcher, and thereby, as Levinas suggests, produces research encounters and ultimately knowledge that is “dynamic, tentative, relational” (Goslinga & Frank, 2007, p. xvii). Emphasis on the individual carer’s responsibility to ethically interact with residents, while important, has been criticized for failing to acknowledge the broader  (*"  ! collective responsibility within the care environment in which the care interaction takes place (Baldwin & Capstick, 2007b). In other words, while individual responsibility to engage with a resident, and others, as persons (“Thou”) is important, it does not acknowledge a larger social context and the organizational-level imperative to create spaces (personal and relational) as an intrinsic part of the philosophy of care. More specifically, while training is important, on its own, it is insufficient (Banerjee et al., 2008). There is evidence that the practice of ethical care becomes an undue burden for individual carers when it fails to take into account structural hurdles to PCC (O’Connor et al., 2007). As an extension of this point, the omission of a complex understanding of the institutional contexts in which ethical care takes place might also be seen as a major hurdle in the translation of PCC theory to practice. Activity, Social Inclusion, and Exclusion in LTRC The ability of a LTRC facility to transform from a traditional, medically-based mode of care to one that also attends to the everyday needs and preferences of the “person” is often discussed in the literature through exploration of the social environment. These discussions centre on issues of social inclusion or social exclusion and their respective influence on residents’ well-being. Activity figures prominently in these discussions. The literature on care facilities shows that high levels of boredom and social monotony endured by residents define life in “the nursing home” (Ice, 2002). Goffman’s (1961/1991) description of institutional life and its soul-destroying impact on the individual remain influential in research devoted to improving daily life in LTRC which continue to evoke images of confinement and a loss of control and privacy. Foucault’s (+"  ! (1977/1995) historical analysis of disciplinary mechanisms and power relations highlights the impact of social isolation on the person experiencing it, likening it to modern-day punishment. Whereas, historically, punishment was enacted through corporeal means (namely torture), more recently societies engage in non-corporeal forms of punishment through imprisonment and the associated deprivation of one’s rights and liberty: “it is no longer the body” [that suffers], it must be the soul” (Foucault 1977/1995, p. 16). Foucault develops a model of exclusion that is based on his analysis of how society in the Middle Ages dealt with individuals and the social practices of deciding who might be labeled abnormal. Individuals who were deemed abnormal, as in the case of lepers, were cast out “into a vague, external world beyond the town walls, beyond the limits of the community” (Foucault, 1999/2004, p. 43). The result of this marginalization, this “spatial partitioning” of groups of individuals, was that “two masses were constituted, each foreign to the other” (Foucault, 1999/2004, p. 43). This Othering is echoed in Davies’ (2003) depiction of the nursing home in BC in the late 19th century. Davies (2003) contends that the early nursing home in British Columbia should be understood as part of “a larger project whereby the state used formal, public institutions to separate the needy and deviant from the rest of society” (p. 55). In this way, residents were physically and culturally removed, “shut out of public discourse and community perceptions of where and how the aged lived” (Davies, 2003, p. 57). Of course this outcome was not overtly stated in the official literature; rather it was socially practiced. For example, it was determined that nursing homes should reside on the  (,"  ! outskirts of the city so that residents would be removed from the noise and activity of the city into more peaceful and pastoral surroundings (Davies, 2003). Factors in Social Exclusion Within the institution itself, research indicates that there is a further social partitioning. This social division is expressed both materially and ideologically. LTRC research shows that internal divisions are connected to the institutional use of space; in particular, special care units (SCUs). Foucault’s (1967/1984) concept of non-places or “heterotopias” highlights a material practice of separation relevant to the SCU. Heterotopias are described as forgotten or marginalized places that are reserved for particular individuals who are either in crisis or whose behaviour is labeled deviant. Within LTRC, the SCU might be seen as a perfect example of a heterotopia. Constructed during the 1970’s, SCUs are a response to the perceived problem of an increase in residents with severe cognitive impairment and the desire to isolate residents who were deemed “behaviourally difficult” from the “normal” resident population (McLean, 2007b, p. 61). Examples of so-called challenging behaviours include aggression, agitation, wandering, hitting and yelling (McLean, 2007b; Morgan & Stewart, 1997; Rosen, T., Lachs, M. S., Bharucha, A. J., Stevens, S. M., Teresi, J. A., Nebres, F., & Pillemer, K., 2008). Although SCUs were developed to provide a prosthetic environment (both socially and physically) to prevent these identified challenging behaviours when a resident is deemed likely to benefit from supportive physical and social setting, research on the effectiveness of the SCU is inconclusive (Kovach & Henschel, 1996; Reimer, Slaughter, Donaldson, Currie, & Eliasziw, 2004). It seems that despite the greater (-"  ! financial investment in SCUs, research identifies few if any benefits (for example, in functional abilities or cognition) to residents of an SCU (Grunier, Lapane, Miller & Mor, 2008; Reimer et al., 2004). In addition, the spatial partitioning of residents with dementia in the SCU context has been questioned in light of statistics that indicate that up to 70 percent of the resident profile in long-term care setting have some cognitive impairment, yet do not receive specialized care (Calkins, 2001). How social inclusion/exclusion in LTRC operates at an ideological level is evident in Kitwood’s (1997) description of a care culture that exhibits a malignant social psychology (MSP). Kitwood (1997) highlights the divisions that exist within organizations marked by a MSP where differences between “us” (care staff) and “them” (residents) come to be taken-for-granted ways of being, with negative implications for both. The care staff has been shown to be highly significant in residents’ social inclusion or exclusion. Bruce’s (2004) research on social exclusion (and inclusion) develops this point through what is described as an “inverse care law,” which stipulates that, “as dementia becomes more severe, the likelihood of appropriate care for emotional, physical, occupational, spiritual and social needs decrease” (p. 126). Bruce attributes this “law” to a disparity between the demands of the job and the skills of the staff. Namely, a lack of specialized skills or the staff’s inability to communicate with residents with cognitive impairment creates a pessimistic outlook for the residents and impacts the staff’s perceived ability to make a difference in residents’ lives. Bruce (2004) found that of all the possible contributors to social inclusion, staff views were the most influential. To ameliorate this, this researcher maintains it is imperative to counteract (common  )."  ! sense-based) negative opinions or stereotypical ideas within organizations with more positive resident-focused understandings. Person-centred approaches seek to address the negative outcomes of spatial partitioning, which are material and ideological and which are linked to the social exclusion of residents of long-term care from the wider community and from the social life within a care setting. Studies indicate that a growing number of residents have some degree of dementia and that this segment of the population is at increased risk for social isolation. Nevertheless, dementia does not diminish a person’s need for social inclusion (Kitwood, 1997); it might even produce a greater need for human connections (Brooker, Woolley, & Lee, 2007). Kitwood’s (1997) vision for culture change includes recognition of (social) inclusion as one of the main psychological needs of persons with dementia. Similarly, Thomas’s (1996) Eden Alternative describes boredom, loneliness and isolation as endemic to traditional care and sets to eradicate these problems through his Edenization of a care setting. This model however is not specific to dementia and research evidence on its usefulness is inconclusive (Coleman, Looney, O’Brien, Ziegler, Pastorino, 2002). Despite increased attention to dignity and quality of life, and the trend toward improved décor to create more “home-like” settings, social isolation and impoverished lives for residents are still evident (Bruce, 2004; Calkins, 2001). Successful Aging and Activity The association between well-being and activity has deep roots in social gerontology (Litwin & Shiovitz-Ezra, 2006). Early on, Erikson’s (1950) psychosocial developmental stages, canonical in aging studies, established that as individuals reach the last stage of life they encounter increased tension or conflict between the dichotomous )%"  ! categories of ego integrity versus despair. According to this model, when a person reaches old age (the 8th stage), a natural withdrawal from productivity occurs and the person enters either a reflective state where one is either proud of the life they have led (ego integrity) or is dissatisfied (despair) (Brown, Lowis, 2003). In contrast, activity theory connects sustained engagement in life to well-being and, ultimately, to “successful aging” (Litwin & Shiovitz-Ezra, 2006). The promotion of the concept of successful aging in gerontology served to counter earlier theories that focus on the disengagement of the older adult whereby individuals inevitably relinquishes his or her roles and responsibilities, an idea that was presumed to be a natural part of growing older (Minkler & Fadem, 2002). While there are many arguments for and against Erikson’s model and other considerations of activity in old age, these tend to produce a false binary, as Katz (2000) points out, around activity and inactivity (reflection). Activity in old age is a complex issue. The notion of activity in old age as a “universal ‘good’” (Katz, 2000, p. 136) and that inactivity is generally “bad” remains pervasive in gerontology. Katz (2000) links the social construction of activity in the field to a political economy where “most gerontological and policy discourses pose activity as the ‘positive’ against which the ‘negative’ forces of dependency, illness, and loneliness are arrayed” (p. 147). In the 1980s, Rowe and Kahn popularized understanding of the dichotomy between positive aging and negative aging through the concept of successful aging, which was described as an absence of disease (Minkler & Fadem, 2002). In contrast to the loss and decline paradigm that had dominated gerontology, the notion of successful aging provided an important alternative perspective in the field; it highlighted the  )&"  ! importance of lifestyle and allowed researchers and carers to identify the complex factors that put some people at risk for disease and disability (Minkler & Fadem, 2002). Although this perspective has served to challenge negative conceptualizations of old age, it too is problematic (Minkler & Fadem, 2002). As Leedham and Henricks (2006) point out, discussions of successful aging with its emphasis on the importance of individual responsibility for a healthy lifestyle fails to account for the social, structural influences that impact how a person ages. These researchers suggest that the concept of successful aging is problematic because it represents the Eurocentric values of a predominantly white, male middle class, and therefore excludes diverse voices of those disenfranchised across divisions of gender, class, race, age or ability. With respect to dementia and LTRC, the tendency to position people in relation to successful aging has created particular conceptualizations of “success” and its usual corollary, unsuccessful aging. Minkler and Fadem (2002) address the limitations of this concept through their application of the successful-aging paradigm to people with disabilities, a group that by definition are excluded from considerations of successful aging. Katz attributes this binary to “neoliberal antiwelfarist agendas” which are interested in the “uncritical promotion of positive activity,” while also problematizing “older bodies and lives as dependency prone and ‘at risk’” (2000, p. 14). In his equation, dementia by its nature is appraised as unsuccessful aging. In relation to dementia, views on successful aging are particularly contentious, largely because of the normalization of definitions of the concept, which serve to obscure “the possibility of aging creatively in the face of disease and disability” (Leedham & Henricks, 2006, p. 37). Von Faber and van der Geest’s (2010) research in this area led  )'"  ! them to conclude that “success” in aging should be reconfigured, largely because it is understood differently, or defined differently, by the people experiencing it than by those evaluating from the outside—family members or health professionals. Activity, Well-Being, and Dementia in LTRC Katz (2009) explains how despite the pervasive use of activity in gerontology, there is no agreed upon definition of activity. He also contends that the construction of activity in terms of success and the valuing of an active body in old age allows for a host of professionals (nurses, occupational therapists, activity staff) to exist: “activity expands the social terrain upon which gerontologists and related professionals who work with the elderly can intervene” (Katz, 2009, p. 126). Important to my study is Katz’s contention that within institutional settings, a particular type of “busy” body is sought after, namely, one that can be managed. In LTRC, this process is evident in the management of residents’ bodies by a host of staff who oversee and assess residents engagement both in relation to daily self-care activities like bathing and getting dressed (known as Activities of Daily Living) as well as in structured, leisure-type activities. In many residential settings, this engagement is monitored through the Resident Assessment Instrument (RAI) (Mor, Bronco, Fleishman, Hawes, Phillips, Morris & Fries, 1995). However, challenges in assessment occur when markers of engagement and activity differ from the behaviours and preferences of individuals in care, for example, in cases where a resident prefers to engage in a solitary or contemplative activity (like prayer or meditation) or a more passive, less structured everyday activity (like making tea or sweeping the floor). These less valued activities challenge conceptions of “activity” and correspondingly the way we evaluate individuals’ engagement in the social life of a care setting. )("  ! Research on activity in LTRC and the well-being of persons with dementia can be broadly divided into two interrelated areas: 1) the therapeutic use of activity, namely, to prevent dementia-related behaviours, and 2) the role of (meaningful) activity to support personhood and the overall well-being of persons with dementia. 1) Therapeutic Activity: Meeting the Needs of the Person. As suggested, activity in the LTRC context is usually discussed in terms of structured, recreational activities that possess therapeutic value. The objective of therapeutic recreation has been described as maximizing “functional capabilities of clients and to help in the rehabilitation of the ‘total person’ by alleviating humanistic problems related to psychological and physical disability (Greenblatt, 1988 as cited in Ice, 2002, p. 347). Examples of activities common in LTRC include arts and crafts, music, bingo, baking, and current events. Research suggests that activity is an important part of residents’ quality of life including ameliorating many of the challenges of institutional life. For example, Schreiner, Yamamoto and Shiotani’s (2005) found that for half the residents in their study, the only time they demonstrated happiness was during recreation time. This study and others identified residents’ access to and engagement in activity as integral to the prevention of negative or problem behaviours commonly experienced in LTRC, especially in persons with dementia (Cohen-Mansfield, Marx, Thein & Dakheel-Ali, 2010; Kovach & Henschel, 1996; Schreiner et al., 2005). Literature on activity in LTRC has traditionally considered activity in relation to the prevention and management of challenging behaviours. More recently, however, research is beginning to highlight the importance of understanding individual actions as attempts to communicate a range of personal needs or desires (Cohen/Mansfield, 2000;  ))"  ! Granheim & Jansson, 2006; McLean, 2007b); these understandings counteract the biomedical pathologization of the individual (Dupuis, Wiersma, Loiselle, 2012) and a narrow focus on treating symptoms (i.e. the behaviours) through chemical and/or physical restraints. This research suggests a need to consider a range of factors in residents’ social, psychological and physical environment. The ability of LTRC to support residents’ continued involvement in daily life by meeting their social (psychological) needs is a key aspect of the discourse on culture change. It is reasoned that LTRC prioritizes residents’ physical and medical needs, while failing to meet residents’ social needs (Hancock, Woods, Challis, & Orrell, 2006). Participation in structured activities and group events has been shown to help residents meet their social needs, and in so doing, to improve their quality of life. This in turn reduces negative behaviour and might be seen to improve an individual’s health and wellbeing. Dewing’s (2006) research on the behaviour of wandering illustrates the impact of biomedical understandings of walking as well as the potential of the social context of care to support residents engagement and overall mind/body well-being through activity. Dewing (2006) suggests the importance of reconceptualizing wandering, changing it from a problem to an activity. This endeavour requires, in part, taking steps to enable people to walk, rather than striving to prevent it. It might be that walking was a part of the person’s life and an expression of self, or perhaps, walking is a way of coping with stress or even an adaptive response to a person’s “premorbid” state (Song & Algase, 2008). Increasingly, with the proliferation of person-centred theory, negative behaviours are represented less in terms of a natural outcome of a disease process, and more as an  )*"  ! expressions of unmet needs—or in the case of wandering, possibly “a natural activity” (Dewing, 2006, p. 247). Kitwood’s work is fundamental to such a shift in understanding activity and wellbeing. Kitwood (1997) includes “occupation” as one of the five psychological needs of persons with dementia. To him, occupation “means to be involved in the process of life in a way that is personally significant, and which draws on the person’s abilities and powers” (p. 83). For some residents, those who are more capable and able to express themselves vocally, their agency to participate in their own care is clearer. But, this type of agency is harder to identify in people with more advanced dementia and, as Kitwood (1997) suggests, it becomes the responsibility of the institution to support residents’ through respect for “occupation” of both the individual but also to support carers’ creativity and knowledge development so that they can fulfill the needs of the person with dementia. For example, Harmer and Orrell (2008) point out the importance of staff sensitivity and skills training to produce the necessary physical and social environment adaptations to support the involvement of persons with dementia. These skills might also be considered in relation to Kitwood’s description of empowering residents through enabling, facilitating, and collaborating care practices (Brooker & Surr, 2005). 2) Personhood Support: Finding the Meaning in Activity. A small body of research looks at the need to recognize the importance of personally meaningful activity as a potential resource for fostering or eroding personhood (Phinney, Chaudhury, & O’Connor, 2007). Commonly, research on PCC considers carers’ ability to support occupation and contribute to the well-being of residents is grounded in an understanding of a person’s past and their personal preferences. It is through the identification of what is  )+"  ! meaningful to the individual that carers might maximize the likelihood of residents’ participation in life’s processes and their overall well-being and quality of life. The literature suggests a general consensus on the importance of meaningful activity to support personhood and the well-being of individuals across the dementia journey. Until now, research on activity for persons with dementia has largely focused on activity that takes place in formal care settings (Phinney et al., 2007). In this body of literature there is scant attention paid to what makes activities meaningful to persons with dementia and what their activity preferences are (Harmer & Orrell, 2008; Leone, Piano, Deudon, Alain, Wargnier, Balard, Soriano, Malléa, Robert, Dechamps, 2012; Menne, Johnson, Whitlach, & Schwartz, 2012; Phinney et al., 2007). There is also little known about how best to translate this knowledge toward the social inclusion of the most marginalized residents (Knight & Mellor, 2007). One study that makes an important contribution to this field is by Harmer and Orrell (2008). They found that the quality of the experience of activity was pivotal, rather than the type of activity. This research also established that what made activities meaningful to residents was related to values and beliefs that were affiliated with past roles, as well as past interests and routines. Enjoyment was also a vital ingredient to engage residents. Those activities that reinforced a sense of identity and belonging were also meaningful. In short, activities in which residents found meaning were those that fulfilled their psychological and social needs. Other researchers have also identified personally meaningful stimuli, such as past work roles, to engage residents with dementia (Cohen-Mansfield, Marx, et al., 2010, 2010b; Kovach & Henschel, 1996; Popham & Orrell, 2012). In a study on meaning and activity in community dwelling persons with  ),"  ! dementia, Phinney and her colleagues (2007) point out that participants’ engagement in a range of activities (household chores, leisure and recreation, and work-related activities) facilitated a sense of connectivity and belonging, while also helping individuals to retain their autonomy and sense of self, despite their dementia diagnosis. If the involvement of people with dementia in activity hinges on a sense of continuity, and activities that are based on a person’s past preferences are particularly effective to the engagement of persons with dementia, the importance of being able to access and use this information to inform care plans and practices emerges. Hence, the link between the use of biography in care and occupation, discussed earlier in this chapter, seem clearly inter-related. However, the research suggests that despite the identified, multi-faceted benefits of activity, only rarely is activity considered an essential part of a resident’s care plan rather than something that is supplementary, diversional or recreational (Palmer, 2010). This is a vital area of research for development, because as Brooker (2008) states, the provision of activities and opportunities grounded in the needs of residents rather than the needs of the institution is essential to making a life worth living in a care facility. Chapter Summary Much of the research addressed here illustrates a central impasse that exists between theory and practice, and between research and day-to-day life in LTRC. It highlights the difficulties that emerge in the process of translating largely humanistic, ethics-based theories of personhood, person-centredness, and relational care into practice. Despite the relatively abundant research on the conceptual strengths of PCC, there remains a scarcity of empirical research on the benefits of such an approach to care )-"  ! practice, and there are few research tools in use that elucidate the association between PCC and a better quality of life (Edvardsson, Winbalk, & Sandman, 2008; McCormack, 2004; Nolan et al., 2004; Packer, 2000). Noted for its complex and multidimensional nature (McCormack, Dewing, Breslin, Coyne-Nevin, Kennedy, Manning, Peelo-Kilroe & Slater, 2010), PCC still requires understandings of what organizational factors facilitate or hinder implementation and practice (Epp, 2003; Innes, 2009). This chapter outlines the complex landscape of dementia care and LTRC more generally, in which the needs of the institution and the broader socio-political context of care intersect and often conflict with the needs of the “person” in care, i.e., those needs apart from, but not mutually exclusive of, biomedical needs. Accordingly, this study endeavours to add critical empirical research to this evolving field. Although a considerable amount of research has explored the importance of relationships in care, and biography shows great potential in this area, only recently have social structural issues in LTRC that challenge the resources of staff skills, time, money, and organizational support been considered. This tension is also evident in the literature on activity in dementia. There is general consensus in the research on the importance of social inclusion to the well-being of residents and staff, but what is less clear from the research is how to support this end in light of projected profiles of residents who are generally frailer, sicker and living with more advanced dementia. There needs to be more research on meaningful activity for residents, especially those with dementia, in order to design care plans to represent the desires and preferences of the person and, in so doing, to better meet residents’ social needs for pleasure, occupation, and overall well-being.  *."  !  CHAPTER 3: CONCEPTUAL FRAMEWORK In this chapter, I describe the conceptual framework guiding this study. This ethnography was conducted under the epistemological influence of critical social theory. No single approach provides a sufficient conceptual foundation for this ethnography. Instead, I draw on a range of perspectives that link social theory with social aspects of aging in order to respond to my research objectives: critical, Foucauldian and feminist gerontology. In combination, these critical perspectives inform this study. Each provides an important lens for considering the interface between personal and interpersonal, organizational, and structural levels, under the assumption that understanding a culture of care requires recognizing the importance of how all three levels work to shape daily life for the people who live and work in the care setting. In this chapter, I outline the overarching framework for this study, beginning with critical gerontology and then going back to the foundational works of Foucault and feminist gerontology. My use of these different critical approaches strives to build on Tom Kitwood’s seminal work in the area of dementia, personhood, and person-centred care that provides structure to my consideration of the relational aspects of care and the process of culture change underway at Cedar Grove. Critical Gerontology Critical gerontology is an area of scholarship that has gained momentum over the last 20 years, challenging many of the tenets and theories of mainstream social gerontology. To Ray (2008), “critical gerontology serves the necessary role of casting a *%"  ! critical eye on society and the field of gerontology itself” (p. 97). Minkler (1996) articulates two paths that have emerged simultaneously in critical gerontology: a political economy path and a humanistic path. In general, the political economy path considers issues of aging in social structural terms and focuses on issues of power, social location, and inequality as fundamental to consideration of the aging process. The humanistic path, as Minkler describes it, explores broad questions of meaning in the lives of older people. Although these paths are distinct, Minkler contends that there are also times when they intersect. Similarly, Katz (1996, 2009) critiques gerontology for a narrow focus, and he suggests that there is a need for a blurring of disciplinary boundaries to create stronger ties with the humanities and to make greater use of reflexive methodologies and a radical political engagement. The absence of critical analyses in mainstream social gerontology, Baars and colleagues (2006) suggest, has limited understanding of social processes that shape the life course and old age as well as alternative perspectives on conceptions on old age. Katz (2009) describes critical gerontology as “a vibrant subfield blending humanities and social science ideas to challenge the instrumentalism of mainstream gerontology and broaden aging studies beyond biomedical models” (p. 85). Critical gerontology foregrounds concern for social justice and equality in order to effect positive change, for example, in how aging is socially constructed, studied, and experienced. The desire to transform research and practice hinges on knowledge production and mobilization that strives to challenge taken-for-granted assumptions of positivism. The ontological and epistemological challenges that come to light in critical, feminist and Foucauldian gerontology focus on “truth” claims and the separation of subject-object relations. All critique the possibility of value-free, objective analyses by  *&"  ! demonstrating how power relations that are socially and historically grounded mediate academic research (Guba & Lincoln, 2005; Kincheloe & McLaren, 2005; Strega, 2005). Thus, the integration of a critical perspective within gerontology problematizes foundational theories in studies of aging. Powell & Longino (2002) argue that postmodern ideas have helped move theories of social gerontology to include more productive or optimistic images of old age. The value of critical gerontology to this exploration of LTRC is that it helps to expose experiences of care and daily life (for residents and staff) as more than features of individual experience. This perspective compels us to question why things are done particular ways and how they became accepted as the norm (Bartlett & O’Connor, 2010). A critical perspective also helps to foreground a contextualized, multi-dimensional understanding of life in LTRC by examining how individuals are constructed within particular structures and contexts. It endeavours to recognize and promote understandings of the socio-political interconnections, synergies, and tensions that influence the provision of residential care. Foucauldian Gerontology Within critical gerontology, the work of philosopher Michel Foucault has been highly influential. In this study, his scholarly writings on power and knowledge, particularly as they converge around institutions, have been instrumental in my quest to contextualize and expose the social functions and organizational culture shaping the social space of LTRC and describing the roles and experiences of residents, their families, care staff and administrators. Foucault provides a wealth of scholarship that critical sociologists and gerontologists have taken up to theorize aging and the institutional lives of older adults (Brijnath, Manderson, 2008; Grenier & Leonard, 2006; *'"  ! Katz, 1996; Powell & Biggs, 2000; Powell & Longino, 2002; Powell, Biggs, & Wahidin, 2006; Twigg, 2004; Wahidin & Powell, 2001). Mostly, widespread use of his theories and concepts, even as they relate to aging, has come out of social and cultural studies: Powell and Wahidin (2006) suggest that these theories and concepts have been undertheorized in aging studies. This represents a potentially important gap in knowledge. Culpitt (2006) suggests that Foucault’s analytic tools are valuable to the radical exploration of established politics and social policies relevant to aging. In this vein, Manias and Street (2000) employ what they call a “toolbox approach” in their research of nursing practice. This is consistent with Foucault’s own thinking on the potential utility of his scholarship for social inquiry: All my books…are little toolboxes…if people want to open them, to use this sentence or that idea as a screwdriver or spanner to short-circuit, discredit or smash systems of power, including eventually those from which my books have emerged…so much the better. (Cited in Manias & Street, 2000, p. 50) In the paragraphs below, I discuss the Foucauldian concepts that I have used as tools for understanding institutional care and how they helped build interpretation and shape analyses in this critical ethnography. Space and Power in LTRC. Foucault’s representation of the Panopticon and the associated “gaze” has been widely applied to critical studies of biomedicine and the institutional care of older people. In Discipline and Punish—The Birth of the Prison, Foucault (1977/1995) refers to an architectural feature created in the late 18th century by Jeremy Bentham. An economist by trade, Bentham created the Panopticon as a means of enabling the social control of many prisoners by few guards. He accomplished this  *("  ! through the physical design of prison. A “central tower” from which the guards might maintain constant surveillance of inmates’ cells that were organized in a circle around it functioned as an extremely powerful disciplinary mechanism. Not only did it serve the practical needs of the institution—allowing the guards to see prisoners—it also functioned “to induce in the inmate a state of conscious and permanent visibility that assures the automatic functioning of power” (Foucault, 1977/1995, p. 201). As Foucault (1977/1995) famously describes it, the Panopticon shows how “power has its principle not so much in a person as in a certain concerted distribution of bodies, surfaces, lights, gazes; in an arrangement whose internal mechanisms produce the relation in which individuals are caught up” (p. 202). In the field of aging and dementia, the “gaze,” as Foucault identifies it, has come to take many forms. In gerontological literature, there are prevalent references to the “medical gaze,” “the clinical gaze,” the “gaze of youth,” a “cultural gaze,” and a “professional gaze.” Feminists add to this the notion of the “phallic gaze” (Heaton, 1999; Malacrida, 2005; Powell & Biggs, 2000, 2003; Twigg, 2004). In various ways, this work speaks to Foucault’s argument that the power of the gaze is dependent both on its “interiorization by, and devolution to, the objects of surveillance” (Heaton, 1999, p. 770). This means that counter to the belief that power is possessed by few and subjected on many, Foucault’s concept of the gaze illustrates the democratic nature of power. This notion has provided an important lens in my research for understanding the ways in which residents not only feel the effects of the gaze from staff, but also internalize the gaze and project it onto others. The functioning of the gaze in this way helps to understand power in LTRC in diverse ways. For example, power is not seen to  *)"  ! be strictly top-down, or “uni-directional,” enforced by those at the top of the hierarchy (management) down to those at the bottom (residents). Rather, as Foucault and others have demonstrated, the effects of power flow and circulate in all directions, from top to bottom and side to side (Heaton, 1999). Bringing a Foucauldian lens to my analysis helped facilitate interpretations of the multidirectional flow of power and drew attention to the complexity and tensions surrounding individual behaviour. When applied to LTRC at the organizational and structural level, this understanding illustrates how staff are subject to the gaze of residents, other staff, as well as management who, in turn, are subject to surveillance and power through licensing agents, policy makers, family members and the visiting public. Foucault’s treatment on the exercise of power reveals the ways in which people are not merely the victims of a powerful other, but rather active subjects who are capable of action and choice (Culpitt, 2006) and who in the process produce and reproduce various power dynamics. Discourse and Power in LTRC. In The Birth of the Clinic (1963/2003), Foucault explores the origins and operation of the gaze and what he refers as discourse in relation to biomedicine. One of Foucault’s most important contributions to academic research is his notion of “discourse.” In general, discourse might be defined as a “set of possible statements about a given area,” and discourse “organizes and gives structure to the manner in which a particular topic, object, process is talked about” (Kress, 1985, p. 7, as cited in Cheek, 1999, p. 387). The gaze of modern medicine functions as a disciplinary mechanism within the nursing home, and as Foucault (1963/2003) describes it, is essential to the development of a medical discourse that began in the late 19th century when the doctor’s gaze made visible what until then had been invisible; it enabled one “to  **"  ! see and to say” (p. xiii). For Foucault (1963/2003), what is said, i.e. the discourses at play in a particular context, allowed for the creation of the clinic or the hospital; it opened up a type of intense surveillance, which “establishes the individual in his irreducible quality” making it possible “to organize a rational language”(p. xv) around care of the body. This medical gaze then creates the possibility of a person being an object or a “case,” allowing medical discourse to produce diagnoses (to expose the “truth”) that in turn legitimizes a certain course of action (Chatterji, 1998; Malacrida, 2005). For Foucault, knowledge produced through discourse is characterized by regulation and established parameters; “discursive practices maintain discourses that subsequently constitute power relations and knowledge” (Manias & Street, 2000, p. 52). The gaze and dominant discourses it produces function as instruments of government enacted through the work of the caring professions, such as nurses, “a powerful group” that “helps the state to govern at a distance” (Holmes & Gastaldo, 2002, p. 563). In LTRC, dominant discourses governing care that determine delivery have traditionally been biomedical. Biomedical models construct aging as a problem that is characterized by decline, dependency and decay (Powell & Biggs, 2003). Because a biomedical lens underpins commonsense approaches in practice, alternative approaches compete to gain importance. In other words, recognizing that disease processes alone do not determine a person’s well-being in LTRC (Kitwood, 1997; Lyman, 1989), for people with dementia in particular, the continued dominance of a biomedical perspective is a source of potential exclusion (Brannelly, 2011; Innes, 2009; O’Connor et al., 2007; Bartlett & O’Connor, 2007, 2010).  *+"  ! In my study, I drew on this understanding to recognize the importance of shifting attention to discursive practices, culture members’ everyday talk, as well as official statements contained in organizational documents as a vital step for understandings of what helped and hindered culture change in the research site. Bio-power in LTRC. Bio-power was used by Foucault to identify a form of authority that emerged in the 18th century whereby sovereign rule over subjects was replaced by the “administration of bodies”, specifically, the “subjugation of bodies and control of populations” (1978/1990, p. 140). This period of history saw the advent of state run clinics, schools, and universities, each exerting certain types of power over and through various members of society. Foucault highlights how whereas at one time in history, power over life and death emanated from the sovereign, with the advent of capitalism, the law operated to propagate power over life and preserve social order, in part, through the production of a “normalizing society” (1978/1990, p. 144). In Discipline and Punish—The Birth of The Prison, Foucault (1977/1995) writes that, The judges of normality are present everywhere. We are in a society of the teacher-judge, the doctor-judge, the educator-judge, the ‘social worker’-judge; it is on them that the universal reign of the normative is based; and each individual, wherever he may find himself, subjects to his body, his gestures, his behaviour, his aptitudes, his achievements. (p. 304) To Foucault (1978/1990), the production of a “normalizing society,” which ultimately ensured the smooth functioning of the economy, describes how the lives of residents, no longer a part of the workforce or productive economy, are shaped through a kind of  *,"  ! process of normalization. Foucault referred to the combination of professional experts and the objects of power—in the case of my study, residents—as a kind of “carceral network” or “panoptic web.” In this network of power and knowledge, residents are subjected to surveillance and monitoring, which in turn allows them to be judged according to various measure of normality. It is important to recognize that, within the research process, the researcher adds to the disciplinary network with the additional power dynamic created by the social sciences and knowledge production. In the field, I considered myself part of this network whereby I produced knowledge via my position as a qualitative researcher-judge, an ethnographer-judge, and a Dementia Care Mapperjudge. I saw myself very much functioning within Foucault’s carceral network or panoptic web. The Foucauldian conception of bio-power, power over bodies and the standards or norms created by way of disciplinary knowledge is foundational to this investigation; it helps to foreground the “rational administration” of LTRC institutions (McLean, 2007b, p. 111). Conceptually, attention to bio-power elucidates the normalizing forces in institutional-based dementia care and the study of aging in general, helping to locate the local administration of care and inquiry in wider social, economic and historical processes. It helps shed light on the legacy of the nursing home Davies (2003) identifies in her history of residential care in British Columbia, specifically, the extent to which “Old age homes have always been physical manifestations of social and culture attitudes toward the last phase of life” (p. 54).  *-"  ! Feminist Gerontology Finally, I discuss how feminist perspectives provide an important critical lens for this study. Specifically, feminist insights and scholarship in the areas of knowledge production, ethics, carework and intersectionality have all contributed to my ability to shape the research questions posed in this ethnography and interpret emergent findings from my fieldwork. By virtue of demographics, at least in the wealthiest countries, aging has been constructed in research and policy as predominantly a women’s issue (Graham & Stephenson, 2010; Ray, 1996). Carework is also primarily a women’s issue (MartinMatthews, 2007; Twigg, 2004). Despite this situation, there is scant feminist research in the field of gerontology. Calasanti (2004a) notes that few gerontologists identify themselves and their work as feminist, which is perhaps surprising in light of the obvious overlaps between research devoted to aging, ageism, citizenship, social policy, and carework. In feminist discussions of dementia and social justice, the work of Barnes and Brannelly (2008) and Bartlett and O’Connor (2010) offer important insights of great relevance to this study. These researchers stress both practical and political applications of a relational ethic of care in the context of dementia. Ethic of care principles, serve to challenge normative assumptions of dementia as an individual experience, putting forward the need to address the “interdependencies, connections and relational vulnerabilities” (Bartlett & O’Connor, 2010, p. 61) entailed in the dementia experience. Barnes and Brannelly (2008) also advance the value of an ethic of care as a shared value base from which to promote interdisciplinary communications vis-à-vis ethical decision-  +."  ! making. Another important example of the implicit influence of feminist thinking on dementia research is Dewing’s (2007) work on informed consent involving persons with dementia in research. She too draws on a feminist ethic of care to broaden discussions beyond cognition to include a focus on relationship, communication and affect as important to the research consent process. Dewing’s work is instrumental in demonstrating how feminist methodology might be used to look at the convergence of power and knowledge in care research. Although theorists argue that some strains of feminism and postmodernism1 are incompatible, such as in more positivistic feminist approaches, the research that I draw on in this study suggests that the similarities and differences in the philosophical and epistemological underpinnings of both have provided fruitful discussions in critical theory (Ramazanoglu & Holland, 2002). For example, Twigg’s (2004) research provides a useful example of feminist gerontology that borrows from Foucault to explore the issue of bathing in institutional settings. Theoretical discussion of the overlaps between postmodernism and feminism have pushed feminist gerontologists to think creatively about power and the production of knowledge through the taking apart of the foundations of positivism: postmodernism deconstructs “knowledge, power and reality in order to examine how various connections between them have been produced, and with what effects” (Ramazanoglu & Holland, 2002, p. 86). In the area of social construction, postmodern thought that is consistent with feminist thinking which challenges the """""""""""""""""""""""""""""""""""""""""""""""""""""""" %"The literature on critical research offers many and sometimes conflicting definitions of postmodernism. To compound matters, it is often used interchangeably with poststructuralism. In this paper I deal with the work of Foucault, a key thinker for both postmodernists and poststructuralists. While, technically speaking, Foucault’s philosophical writings might be properly described as poststructuralist (Hammersley & Atkinson, 1995; Strega, 2005), his writing have become foundational to much postmodern cultural criticism."  +%"  ! assumed neutrality inherent in positivist knowledge production, foregrounding issues of representation through a focus on the questions of research rather than answers (Ray, 1996). Because of important intersections between postmodern/post-structuralist and feminist thought there are a number of researchers whose work might be identified under the title postmodern feminist. These researchers draw on a critical lens, which includes recognizing gender as a social construct. For example, Twigg’s (2004) study highlights the gendered nature of carework, where caring and nurturing are assumed to come naturally to women, and correspondingly, how women are considered the natural choice to provide care for the bodies of residents (who are also predominantly women). Here, the concept of intersectionality helps to disrupt normalized assumptions around carework (both as “skilled” and “unskilled” labour) and to shed light on the power relations that circulate within care situations. In another example, O’Connor, Phinney and Hulko (2009) recognize how different social locations, including gender, inform the dementia experience in complex and contradictory ways. In keeping with critical social theory, feminist gerontology “can be seen as part of a wider emancipatory project of developing epistemologies in the social sciences that challenge dominant perceptions by starting from the perspective of the lives of the marginalized and oppressed: in this case the old (Laws, 1995, as cited in Twigg, 2004). The acknowledgement in feminist gerontology that gender intersects with age, race, class, sexual orientation, and other markers of difference in ways that privileges some and oppresses others sheds light on the often gender-based, invisible relations that occur in  +&"  ! day-to-day life (Calasanti, 2004b). This understanding is also relevant to thinking about daily life in LTRC. Intersectionality. The consideration of “the other” in postmodern thinking is closely linked to the concept of intersectionality. Within feminist research, intersectionality is seen to have the ability to address issues that conventional feminism is accused of obscuring—that is, the influence of multiple identities on women’s lives (Ramazanoglu & Holland, 2006; Davis, 2008). Interest in intersectionality has been attributed to attempts to come to terms with issues of race and racialization, and to address the failure of feminist researchers to acknowledge lived experience in a way that reflects “multiple subordinate locations as opposed to dominant or mixed locations” (McCall, 2005, p. 1780). Intersectionality has been called one of the most important theoretical contributions to women’s studies and other related fields of study (McCall, 2005). It fits well with critical ethnographic methodologies that are comfortable with the notion of multi-vocality and interpretive practices that strive to achieve thick description (McCall, 2005). The popularity of intersectionality rests in its attempts to address a central concern of feminist methodology: the recognition of differences and multiple positionings of women across, for example, age, class, ethnicity, sexuality, and ability (Davis, 2008). Moreover, intersectionality is valuable in that it provides a means of “challenging the singularity, separateness, and wholeness of a wide range of social categories” (McCall, 2005, p. 1778). That is, it begins from the idea that an individual might occupy several social categories at the same time, with certain aspects of her position or identity emerging as relevant in relation to different contexts. More than an abstract concept,  +'"  ! intersectionality is valuable for understanding “the dialectical relationship between the personal and the political” (Hulko, 2009, p. 44). Intersectionality responds to the accusation that not all women can or should speak for all others, and it has gained attention and use in critical research. There is considerable variability as to whether “intersectionality” is a concept, a paradigm, a theory, an approach, a lens, or something else (Davis, 2008; Hulko, 2009). In the literature, intersectionality is referred to as a concept, at other times, as a theory or a heuristic device. Sometimes, it is a research paradigm and sometimes a strategy for feminist analyses (Davis, 2008; McCall, 2005). Although she is resistant to demands for an agreed upon definition or for the need to set methodological guidelines around its use, Davis (2008) offers the following definition: “Intersectionality refers to the interaction between gender, race, and other categories of difference in individual lives, social practices, institutional arrangements, and cultural ideologies and the outcomes of these interactions in terms of power” (p. 68). Hulko (2009) points out the importance of moving beyond the typical focus on race, class, and gender to include age and disability, which are of particular significance to older women. Other’s highlight that positions cannot be understood as cumulative advantage or disadvantage, but rather positions can operate in tandem or tension with one another in complex and conflicting ways (O’Connor et al., 2009). Rather than perceiving this conceptual uncertainty as a weakness or methodological obstacle in social research, McCall (2005), Dressel, Minkler, & Yan (1997), and others, assert that intersectionality might be seen as a concept that helps us understand how the social and cultural constructions of age shape and determine the  +("  ! experience of growing old. This perspective has been instrumental in allowing me to frame understandings of individuals’ varied experiences of daily life, and the ways in which particular locations privileged some, and oppressed others. Changing Culture: The “Person” in Care My ability to grasp micro-level, personal and interpersonal relations in the culture under study was informed by personhood and person-centred care theory articulated primarily by Tom Kitwood and those researchers who followed in his footsteps. Kitwood (1997) considers as reductionist the belief that one’s experience of dementia is a product of neurological disease alone. His research led him to formulate strategies for the transformation of LTRC, where the “whole context needs radical improvement – through a change in the culture of care” (Kitwood, 1997, p. 42). Kitwood considered a positive social environment to be vital to the well-being of both residents and staff and considered exposing taken-for-granted aspects of care as vital to culture change. To Kitwood, dementia care is skilled work that has the potential to empower staff and residents, especially in contexts where there is proper attention to personhood. It seems to me that there are strong parallels between research conducted from a feminist standpoint, where there is an assumption of the “inseparability of politics and epistemology” (Ramazanoglu & Holland, 2002, p. 67), and person-centred research; both strive to incorporate the voices and experiences of systemically marginalized individuals in society. As discussed above, Foucault’s (1999/2004) work on the power of language to construct experience sheds light on the production of social divisions between normal and abnormal, or between sane and mad. Kitwood’s (1997) descriptions point to similar divisions that define LTRC, where he saw a culture of care marked by a malignant social +)"  ! psychology characterized by disparities between “us” (care staff) and “them” (residents). Goffman (1961/1991) details analogous divisions in his description of the “staff-inmate line” (p. 89). Developing these divisions in aging studies and practice, Graham (2010) cleverly considers that “‘them’ are ‘us’ in not so many years” (p. 186). Post (2006) advocates for the social inclusion of everyone in a moral community, irrespective of cognitive ability. He maintains, ‘the differences between ‘them’ with dementia, and ‘us’ without it are a matter of degree more than of kind” (p. 225). My awareness of an everpresent potential to other residents and of the power of social divisions was important to how I considered the culture of care I was studying. Just as vital was my attentiveness to care interactions that broke down these barriers by creating opportunities for personhood support, positive interpersonal relations, and better relational care. To broaden the social context for Kitwood’s work, my research looked to recent gerontological discussions of Levinas, whose writings on intersubjective relationships might be applied to long-term care practice. Levinas (1958/2009) conceives of social interactions that occur between oneself and the Other as being (optimally) grounded in “asymmetrical obligations” (Hand, 1989/2009). Levinas (1963/2009) also describes the “non-intentional” as meetings between two people that are not based on “preunderstandings,” but rather, involve meeting a person where they are at in the moment, without preconceptions (Greenwood, 2007), thus radically reversing or challenging Buber’s I-Thou. Levinas’ critical approach to intersubjective relations and their grounding in a power differential are vital to this study and have helped to illuminate supportive care interactions as well as the overall care culture.  +*"  ! Summing up, this chapter outlines the various critical perspectives and personcentred theory that form the conceptual frame of this ethnographic study. In combination, these perspectives help to bring into relief multilevel issues in the care culture that produced and reproduced culture members’ experience of life in LTRC. This framework also reveals how each lens adds to a more holistic understanding of cultural practices as well as the influences of broader socio-political factors on the LTRC context. Finally, this framework helps to illuminate person-centred practices and the various challenges at all levels to the transformation of a culture of care.  ++"  !  CHAPTER 4: RESEARCH DESIGN  The purpose of this investigation was to critically explore the impact of a personcentred care (PCC) philosophy on the daily life of residents and staff in an urban-based long-term residential care setting located in Western Canada (Cedar Grove). Through a qualitative ethnographic methodology, I present data generated through multiple methods and representing the perspectives of the various constituent groups that comprise the culture of care. Guided by critical social and gerontological theory, I examine how care is experienced at the personal, interpersonal, and organizational levels as well as the influence of wider socio-political-economic factors that shape culture members’ experiences of life and work in a Canadian LTRC setting. Given the identified gap between theory and practice in relation to person-centred care, this study seeks to add empirical data to understandings of the implementation of a person-focused philosophy at the level of practice in Canadian LTRC. My ultimate goal in this study is to positively impact the living conditions of residents, especially persons with dementia, as well as the working conditions of the people who care for them. This chapter is divided into three main parts. I begin with a description of the study’s overall methodological approach: critical ethnography. This is followed by a section focused on data generation, which presents an account of negotiating entry to the research site through to the various strategies utilized for generating data. In the next section, I discuss how data generation methods are employed in relation to data analysis and interpretation, the ethical considerations raised by this study, and key limitations. +,"  ! Methodology: Critical Ethnography Ethnography is actively situated between powerful systems of meaning. It poses its questions at the boundaries of civilizations, cultures, races, and genders. Ethnography decodes and recodes, telling the grounds of collective order and diversity, inclusion and exclusion. It describes processes of innovation and structuration, and is itself part of these processes. (Clifford, 1986, p. 3) The methodology of critical ethnography was used in this study in order to obtain a richly textured description and in-depth understanding of a long-term residential care facility undergoing organizational culture change. A prolonged period of fieldwork including the primary method of participant observation, both consistent with traditional ethnography, enabled me to examine social and cultural practices “where the group works” (Creswell, 2007). Critical ethnography, like traditional ethnography in which it is embedded (Thomas, 1993), seeks to describe and interpret patterns of behaviour, beliefs, interactions, and language of a culture-sharing group (Creswell, 2007). Creswell (2007) describes ethnography as both a process and an outcome that involves an extended period of (usually participant) observation and immersion of the researcher in the daily lives of the culture members. Although critical ethnography shares many of the same tenets as traditional ethnography, it adds an explicit political purpose (Thomas, 1993). Specifically, critical ethnography endeavours to expose how various social, political, and cultural forces construct reality (Strega, 2005). It questions inequalities of power associated with privilege, access, and wealth, and advocates the use of research for change (Patton, 2002). Like other critical methodologies, critical ethnography is interested in developing interpretative approaches that might help us to better understand  +-"  ! social life—how people find meaning in a particular setting—in order to create significant change. Consistent with a critical approach, this study aims to challenge the status quo (Cook, 2005; Creswell, 2007) and to disrupt “taken-for-granted assumptions by bringing to light underlying operations of power and control” (Madison, 2005, p. 5). In so doing, this methodology allows the researcher (me) to gain insights into the various forms of domination and exploitation that have become “naturalized in everyday social life” (Kincheloe & McLaren, 2005). Thus, my investigation of LTRC had a transformative agenda (Hardcastle, Usher, & Holmes, 2006; Kincheloe & McLaren, 2005; Madison, 2005; Simon & Dippo, 1986; Thomas, 1993). As Cook (2005) argues, conventional ethnography endeavours to speak for participants by describing, while critical ethnography “studies culture in order to change it” (p. 132). This understanding aligns this methodology with the expressed goals of personhood theory and person-centred dementia care, which as Kitwood (1997) contends, strive to disrupt taken-for granted care practices and calls for a paradigmatic shift in care practice. In keeping with a person-centred approach, critical ethnography facilitates access to the emic (insider) perspective of study participants and their cultural reality (Foley, 2002). It attempts to bring to light key insights into previously unknown aspects of the culture—in this study, the culture of care within a Canadian long-term residential care (LTRC) facility. Building on Carspecken’s five stage approach to “doing” critical ethnography (Hardcastle et al., 2006) or “performing” critical ethnography (Madison, 2005), Kincheloe and McLaren (2005) contend that critical ethnography has advanced our understanding of culture as a “complex circuit of production” that involves numerous  ,."  ! relational sets of activities, routines, systems of understanding and meaning-making, and conventions of interpretation, relations and conditions that are both internal and external to the social actor (p. 329). Thus, my study is grounded in a critical ethnographic expectation that the researcher enters the world of the “informants” not simply to discover, describe, or explain it, but rather, to participate in the “co-creation” of culture and culture change (Kincheloe & McLaren, 2005, p. 329). For the purposes of this study, the broader context of “culture of care” is used to describe the social world of the study site where residents, families, direct and managerial care staff members co-exist under a philosophy of care. Critical ethnographers understand culture, in this sense, to be fluid, multilayered, discursively produced, and grounded in material social relations (Kincheloe & McLaren, 2005). Moreover, the critical ethnographer is a “reflexive investigator, who has experienced this unfamiliar cultural space and has dialogued with its practitioners, [and who] can portray this cultural space and its people” (Foley, 2002, p. 473). In the context of LTRC and from within gerontology more specifically, I drew on Kitwood’s (1997) conception of culture as a “settled, patterned way for providing meaning to human existence, and for giving structure to the action within it” (p. 134). Within a dominant culture there are organizations characterized by particular power relationships that produce knowledge, set norms and patterns of (acceptable) behaviour as well as beliefs about truth and what should be within it. This critical lens influenced both data generation and analysis. For example, during the data generation phase of this study, I focused not only on exposing societal disparities that are reproduced in the LTRC culture, but also on ideologies that assisted participants to gain both self-understanding and self-direction.  ,%"  ! Guided by critical and feminist theoretical insights and working in the spirit of critical ethnography, I tried to find opportunities to empower participants by drawing on their expertise, or what well-known feminist Donna Haraway (1991) refers to as “situated knowledge,” to find language and knowledge instrumental to the transformation of their work situations and lives in care. Principles of critical and feminist research practice similarly helped me to identify and recognize power relations within the culture of care under investigation and to foreground power relations and the exercise of power within the research process (Ramazanoglu & Holland, 2002). Research Process In keeping with the critical ethnographic goal of understanding the current conditions and working toward change, multiple ethnographic research methods were used to guide my work. I began by immersing myself in the field, that is, by focusing on the culture of care for an extended period and systematically compiling detailed descriptions over time. The following section describes this process. Entering the Field Gaining entry or access to the field is a significant challenge to ethnographic research, particularly in the case of critical ethnography. When I proposed this study, I envisioned focusing on one care facility to maximize my ability to achieve a rich, contextualized account of a culture of care. Based on my research focus, I considered only those facilities that were guided by an explicitly person-centred philosophy of care. In my considerations of potential sites, I decided to begin close to home and branch outward. This meant focusing on a facility located in the Lower Mainland of British Columbia. I first approached a facility, which I will refer to hereafter in the interest of ,&"  ! confidentiality using the pseudonym, Cedar Grove, in June 2009. Though I had previously worked for over 15 years in various community and hospital settings in the same regional health authority (predominantly in a therapeutic recreation capacity) and was familiar with the larger context of health care and services for seniors in the region, I had no prior knowledge of this facility. I did not know anyone directly connected with Cedar Grove, nor was I conscious of the facility’s “reputation” in elder care. In addition, I was not known to anyone at the site. My awareness of Cedar Grove began somewhat coincidentally prior to commencing this study. Because the facility was located close to where I lived, I would occasionally pass by the building and I might casually take note of comings and goings. I recall one sunny day when I chatted with a woman resident who was riding a scooter; she was out in front of the facility with the resident dog, and she spoke to me of her love of the animal and his companionship. This interaction spurred me to do a quick Internet search, which told me that this facility ascribed to a person-centred philosophy. This discovery was exciting; pragmatically, Cedar Grove’s proximity would facilitate easier and more flexible access to the site promoting deeper and varied participant observation of the culture. My decision to approach the organization was then grounded in both theoretical and practical considerations. Cedar Grove fit my research interests because of its person-centred philosophy and because it was in my neighbourhood. I initially approached the Executive Director (ED) via email. She expressed some interest so I followed up with a lay summary and a description of who I am and the purpose of the study. As per Madison’s (2005) suggestion, I also outlined participants’ roles in the process of inquiry. This document included a list of potential risks and  ,'"  ! benefits of participation as well as details related to confidentiality, a possible interview schedule, and a description of the data generation processes (e.g. my use of audiorecording, transcripts, and field notes). From this interaction, the ED agreed to draft a Letter of Support in support of my research ethics application to Behavioural Research Ethics Board (BREB) at the University of British Columbia. This study received ethical approval January 22, 2010. Study Site Description Cedar Grove is a not-for-profit residential facility described as a “Campus of Care” that offers a range of housing for elders. The idea of a Campus of Care is unique in LTRC because it offers an array of housing options that range from independent and supportive housing, to complex care, all on the same site or in close proximity. Theoretically, a person could utilize the range of housing offered at Cedar Grove as their situation changes; this creates the prospect for individuals to age in place. Built in the early 1980’s, the physical design of the facility reflects standards of that period—in other words, its design resembles an acute care hospital. For example, the floor plans on the care floors are “T” shaped, with double-loaded corridors (See Appendix A) and a nursing station, enclosed by a half door, at one end, and two small social spaces, one with a television. There are a total of 44 rooms on each of the four (complex) care floors and 34 rooms on the Special Care Unit (SCU). Although there were minor renovations to the physical design of the facility in recent years, for the most part, the structure and layout of the facility remain a legacy of the period in which it was built. In general, the walls in the common areas and hallways of the facility are painted neutral or pastel colours such as beige, peach and off-white. Evidence of older colour schemes ,("  ! was also found in some residents’ rooms—hospital blue and greens—but these had been almost entirely phased out. The floors were predominantly white linoleum with black flecks. All of the rooms are private with a sink and vanity, but some rooms share a toilet and shower. Standard furniture provided by the facility includes; one chair, a nightstand, a single bed, and a three-drawer dresser (See Appendix A). Although space is limited, new residents are encouraged to bring personal belongings and furnishings with them when they move in, and, as a result, the décor in residents’ rooms displayed varying levels of furnishings and personalization. Each complex care floor included a “spa” bathing room that contained a tub and shower, outside this area was another toilet. These bathing rooms were windowless, but efforts have been made to make them a bit less institutional in appearance through artwork. In general, rooms on the complex care floors have residential city views and some residents’ rooms have views of the mountains in the distance. Philosophical Orientation at Cedar Grove When I began fieldwork, Cedar Grove was in the final months of its affiliate status with the Eden Alternative, a person-centred care model/franchise. This model had been in place for approximately ten years and many members of the leadership team and several direct carers had attended the Eden Alternative (Thomas, 1996) orientation/training sessions required for registered affiliation. I was initially drawn to Cedar Grove because I knew it had this philosophical orientation. For the majority of my fieldwork, however, Cedar Grove had ceased to operate as a registered Eden facility. Despite their official departure though, the organization continued to promote a person,)"  ! centred philosophy that challenges the traditional, exclusively medical model of care, and it continued to strive to advance culture change as a means to improving life for the people that lived and worked there. Since its withdrawal, the organization has retained many of the philosophies espoused by Eden; some remnants of language, such as “Elders” and “Neighbourhood,” and some structures, such as “Neighbourhood Meetings” and “Resident Council.” Study Sample and Sampling Approach This study’s sampling process was designed to obtain rich data on the culture of care. It employed a purposeful sampling strategy (Creswell, 2007), meaning (as suggested above) that I selected the research site (and the potential participants associated with it) because it could purposefully inform the research objectives and questions posed by this study. Within the wider Campus of Care community, my study focused on two floors of the complex care residence: 1) a so-called “usual” or “typical” floor, Juniper Way, and 2) the Special Care Unit (SCU), known as Holly Street. I believed that these two different floors and the care alternatives they represent would allow me to develop an understanding of LTRC from the perspective of residents with different care needs. 1) Residents of Juniper Way lived on a non-secure care floor with elevator access to the main floor for dining, leisure activities, and to go outdoors. The common area on the main floor is furnished with loveseats and upholstered high-back chairs, a grandfather clock, and small, café style tables. Residents could routinely be seen sitting there. A tuck shop was open for several hours three-days per week. Staffed by a volunteer, the shop allowed residents to purchase sweets, personal care items, jewelry, and other small items. A large mantel occupied one wall of this common space and was decorated with ,*"  ! knickknacks and keepsakes. The dining area that adjoined the common lounge area was composed of small square tables that accommodated up to four residents, a large birdcage, and beyond it, there was a small secure patio area with greenery visible to diners. The large kitchen was attached to the dining area where dietary staff members prepared residents’ meals, which were offered with table service. In addition to the dining room, main lounge, and kitchen, the main floor of the facility also contained administrative offices, a non-denominational chapel, a hair salon, an art room and several bathrooms for residents’ use. Also located on the ground level was the foyer, which was decorated with a few chairs, plants, and a bench that gave the space a welcoming atmosphere. The front desk and Executive Director’s (ED) office were located off the main entrance—the latter of which was visible from the outdoor entranceway. Correspondingly, from the ED office, the outdoor entrance and people’s comings and goings were observable. The main door was secure and required a code to prevent the alarm from sounding. 2) Holly Street, the second site of focus in this study, is a specialized care unit (SCU) for people living with dementia. For the most part, residents of this floor received care, socialized, and participated in leisure programs on the same floor; they infrequently interacted with the main floor physical environment (described above). To make this feasible, there have been structural modifications to Holly Street to add a dining area with a small kitchen and shared social space to the unit. While I was doing fieldwork, this area underwent décor renovations in order to project a more home-like, if sparse, ambience. During this refurnishing, the television was removed from the dining room/common area. Meals for residents of Holly Street were prepared in the main dining area on another floor  ,+"  ! and brought to the SCU on carts. The SCU featured a large garden/terrace that allowed residents’ access to an outdoor area with flowers and plants in raised beds as well as seating areas (See Appendix A). As on Juniper Way, a communal seating area and largescreen television was located in a nook next to the nursing station (See Appendix A). Doors to the stairs on the SCU were locked, and the elevators required a code to operate. Once the site was selected, and I began initial participant-observation sessions, I proceeded with “within-culture sampling” (Creswell, 2007, p. 129) to generate data through the ethnographic methods of participant-observation (PO) and interviews (described below). I used this sampling strategy to gain insight into the larger cultural group. I used the time of initial engagement in the field to talk with people and make observations of the care culture in order to identify potential participants (cognizant of obtaining diverse perspectives), in light of my research focus (Creswell, 2007; Miles & Huberman, 1994). In ethnographic research, this process is often referred to in terms of the identification of “key informants” (Maxwell, 2005), for example, care staff who are wellinformed and accessible and who might provide feedback that would allow me to critically examine my own and other lines of thinking about the culture. Keeping in mind the problematic nature of relying on “key” informants and the power relations implicit in ethnographic practice, it was crucial for me to respect the importance of developing a set of trusting relationships with knowledgeable members of the culture under investigation (Foley & Valenzuela, 2005). Inclusion criteria for interviews and PO then, required involving staff, residents and family members from each of the two units of the care facility as well as administrative staff who oversaw the entire facility. Individuals were  ,,"  ! excluded from participation for the following reasons: 1) their inability to consent and/or assent (in situations where a substitute decision-maker was unavailable to provide consent; and, 2) limited ability to communicate in English. In total, I conducted approximately 300 hours of PO and 23 individual in-depth interviews with people whose daily lives are connected to the culture under study.  There were four groups of participants: 1) Administration: This leadership team is composed of an Executive Director and eight directors from the following service areas: residents, food/nutrition, leisure, and volunteers, as well as professional practice, information systems, and building maintenance. All but one of the leadership team is a woman and all are trained professionals and English-speaking of European ethnicity. The age range was mid-thirties to mid-sixties. Interviews with these individuals generally took place in the director’s office, and of the four categories of interviews undertaken, these were logistically the easiest to arrange and conduct. 2) Staff: This category is comprised primarily of Resident Care Aides (RCAs) because they provide the majority of the direct care work at Cedar Grove. They implement residents’ care plans, under the supervision of the RN or LPN. A large part of their role includes assisting residents with personal care (such as, bathing, dressing), but they also play a crucial role in observing and reporting residents’ behavioural or medical changes. Also included in this participant category were nursing staff, Registered Nurses and Licensed Practical Nurses and leisure staff because of the primary role these members of the team perform in care planning and front-line care. These three groups have been  ,-"  ! combined under the “Staff” category to assist with the goal of anonymity, but at points in the writing of this ethnography, I have had to differentiate their roles. Unlike RNs and LPNs, the licensing and training of RCAs is less stringent2. The direct care population at Cedar Grove was an ethno-culturally diverse group composed predominantly, but not exclusively, of women of colour. At the time of data generation, the average length of employment of direct carers at Cedar Grove was 10 years. Many of these staff are employed on a part-time basis and their hours are shared for facility-wide coverage. The exception here is on the SCU where one leisure staff works 6 hours per day, Monday to Friday. Interview locations for these participants varied, from lounges in the facility, to cafes and restaurants in the adjoining neighbourhood. 3) Residents: The study site’s resident population reflects LTRC trends generally. That is, it includes increasingly older people, the majority of whom are women, and who possess complex care needs (McGregor et al., 2010). During fieldwork, approximately 75% of the residents at Cedar Grove were woman with an average age of 81 years. Also characteristic of current LTRC, approximately 80% of Cedar Grove residents lived with challenges associated with dementia. 4) Family Members: This portion of the care culture proved the most difficult of the four groups to meet at Cedar Grove, let alone to invite to participate in an interview. This methodological challenge reflects the demographic realities associated with residents’ """""""""""""""""""""""""""""""""""""""""""""""""""""""" &"Some of the RCAs on staff completed a recognized RCA program. Although there is provincial variation in education and training for RCAs, in BC, a typical certificate program involves an approximately 4-6 month course that includes classroom, home study and practicum experience Also specific to BC is the presence of a registry that seeks to improve standards of care in the RCA community (http://www.cachwr.bc.ca). In 2010, British Columbia established the British Columbia Care Aide and Community Health Worker Registry that requires RCAs and community health workers in BC who have graduated from a training program to register. At Cedar Grove, RCAs are registered on this list.  -."  ! social situations: only 33% of the resident population had a family member actively involved in their care during the period of my fieldwork. Reasons for this varied, but one might say that this situation reflects broader socio-political trends whereby current economic pressures contributes to the geographical dispersion of nuclear families, people living longer, and generally less connected/supportive social networks (Gilbert, 2006; Sibley, 2006)3. Recruitment and Consent To achieve multiple points of view on the research questions, from a range of perspectives or “subject positions” (Agger, 1991), I sought to cultivate relationships in the field with representatives from the above four groups. Recruitment and involvement of participants reflected feminist, critical approaches that are clearly linked in their conceptual focus and ideological commitment to addressing and rectifying disparities of social power and position. To this end, I worked toward making participants feel comfortable by drawing on my skills as a researcher and my experiences working with people with dementia and other care staff in facilities across a variety of community and hospital settings. This expertise helped me to gain and maintain participants’ trust. While this study generated data from a variety of sources and methods, I began with a prolonged period of engagement, during which I worked predominantly as an observer or a participant-observer in the field. To ensure that all parties were clear about the function and expectations of this fieldwork, I consulted with the leadership team to strategize how best to make my presence and purpose known to the community. It was """""""""""""""""""""""""""""""""""""""""""""""""""""""" '"The lack of familial support or connection among the resident population has important ramifications for understanding person-centred approaches to care that tend to prioritize and assume greater levels of family involvement than those observed at Cedar Grove, which research points to as representative of current trends in LTRC."  -%"  ! decided, in the interests of efficiency and scope, that during my initial time at Cedar Grove, I should attend various staff meetings to present my study to all levels of the care team. These group presentations were supplemented by my attendance at brief daily staff meetings and one-to-one conversations with staff, residents and others regarding the study. Research posters containing my photograph were also placed in prominent locations throughout the facility (See Appendix B). During fieldwork, I always wore a nametag, identifying me by name and position (student researcher). My comfort working with older adults, and persons with dementia specifically helped me to engage resident participants without coercion. This was critical to developing an ethical approach to this qualitative study. The idea of gaining “informed consent” in ethnographic research, particularly in health care settings, is fraught—not only because of the power relationships between researcher and participant, but also because of the complexities and practicalities of observation in public settings (Murphy & Dingwall, 2007). As Kitwood (1998) tells us, “a person who has dementia is, ipso facto, relatively powerless” (p. 155). Tinney’s (2008) research on negotiating boundaries and roles in nursing home ethnographic research cautions researchers when determining the extent to which consent is given voluntarily, to be alert for participation that may stem from loneliness or a desire to please. To address this possibility, at least in part, recruitment was guided by the participatory research model set out by Dewing (2007). Built on feminist ethics of care, this method stresses the importance of relationship in the research process and of employing an “inclusionary approach to consent” (p. 13). Guided by this “process consent method” (Dewing, 2007), the initial stages of recruitment of resident participants might be better understood as “permission for access” (p. 15), as  -&"  ! opposed to proxy consent: I spent time with the residents to ascertain his or her interest and ability to participate. Once interest was established, consent was revisited and reestablished at each meeting with the participants, ascertaining that the person was comfortable with participation. In order to achieve subjective insights into a variety of residents’ experiences, I spent time with residents of different degrees of cognitive ability: those not diagnosed with a dementia, as well as those diagnosed with mild-moderate to severe dementia. Depending on the presence/degree of impairment, I engaged in PO sessions, informal conversations, formal interviews, or Dementia Care Mapping (DCM – described below). Finally, because care can be understood to occur within the context of a triad composed of the person with dementia, the family member (s) and the staff carer (Adams & Gardiner, 2005), the involvement of residents’ family members was also sought (See Appendix E). The residents who participated in the individual interviews were all able to provide consent at the time of participation. This was demonstrated through their ability to relay an understanding of the reason for my presence at Cedar Grove, purpose of my study, and their involvement in it. Each of the resident participants was female, reflecting the gender composition of Cedar Grove and LTRC in general. Data Generation Fieldwork took place over a 12-month period, with intermittent contact over subsequent months (February, 2010 – April, 2012). As an inductive, qualitative investigation, the research design had a relatively high level of flexibility built in, which allowed me to respond and adapt to situations in the field regarding the use and appropriateness of the various methods. During this time, I endeavoured to blur some of -'"  ! the lines between the researcher and the “researched” described by Madison (2005), in part, by developing rapport, a feeling of trust and comfort, with participants. This study was conducted with the postmodern understanding that all knowledge is “partial, in the sense of ‘not-total’ and ‘not-impartial’” (Ramazanoglu & Holland, 2006, p. 66). As Ray (1996) asserts, a postmodern orientation cautions, “every theory provides both a way of seeing and a way of not seeing” (p. 674). Establishing and maintaining a “position of passivity” was not the goal of this study. Not only did I seek to involve myself in everyday life of Cedar Grove, when and wherever appropriate, but individuals from the care community were encouraged to actively participate in numerous aspects of the research project. To respond to the research questions posed in this study and to build interpretation that is rooted in a critical epistemology, this study relied on a multifaceted process of data generation, guided by the directive to “make the work visible in a different way” (Denzin & Lincoln, 2005, p. 4). The ethnographic methods I used to generate data include: participant observation (PO), in-depth individual (conversational) interviews, group meetings, Dementia Care Mapping (DCM), and archival review of organizational documents, policies, staff communications, and health authority documents. Verbatim transcripts were made of all interview sessions and field notes were recorded for all observation sessions, including factual information and reflexive memoing to build in critical reflexivity. Observational data sources also included researcher-produced photographs. When possible, I engaged in member checking by making transcripts available to participants in order for them to see how their views are  -("  ! represented and, in keeping with an iterative approach, to permit clarification and editing (Foley & Valenzuela, 2005; Hardcastle et al., 2006). These multiple methods allowed for the triangulation of findings, that is, for the same phenomenon to be understood from various angles (Morse & Field, 1995). This adds to the credibility of the findings, and ultimately, contributes to my goal of “constructing a multilayered” (Atkinson & Delamont, 2005, p. 828) contextualized account of the social world of a person-centred LTRC facility. Each of these methods will be discussed below. Participant Observation The primary method of data generation in this study was participant observation, with fluctuating levels of participation depending on the stage of the research and what was going on in the research site. Following Creswell (2007), observing in this study involved a series of steps that allowed me to transition over time from observation conducted by an etic or “outsider” to more of a participant-observer or an emic perspective of an “insider.” In critical ethnography, the participant-observation designation indicates that researchers are not neutral, passive observers, but rather, active participants in various degrees in the research site. Nursing home ethnographers have taken up participant observation (PO) in a variety of ways—from training and working as a nurses’ or care aide (Diamond, 1992; Henderson, 1995; Kessler, 2007; Lopez, 2006a, 2006b), to volunteering (Tinney, 2008), to a more traditional (“hands off”) observer position in the field (McLean, 2007b). My role was more consistent with the ethnographic approach taken by McLean (2007b).  -)"  ! In total, I conducted approximately 300 hours of participant observation: these sessions took place at different times of the day, on various shifts, day and evening, and on both weekdays and weekends (when staff coverage varied and fewer care staff in general was present). My experience during these earlier PO sessions revealed that residents retired to their rooms early, generally by 7:00 pm; so in the interest of observing “activity,” I tended to restrict my sessions to the daytime. I did conduct some early morning PO sessions however, having learned from staff that there were several early risers (5 am or 6 am) on the SCU. In general, my initial PO sessions lasted for periods of three to seven hours, and then tapered overtime to one to three hours per floor. The core activity of PO involves not only immersion in the field, but also the production of written accounts of the social