Arts, Faculty of
Social Work, School of
DSpace
UBCV
Wong, Karen Lok Yi
Doctor of Philosophy - PhD
University of British Columbia
This thesis aims to examine the everyday experiences of Chinese people living with dementia using formal support services in Vancouver, Canada and uncover how broader institutional practices and embedded systemic oppression shape the experiences. Research to date documents that racialized individuals are less likely to use formal services but fails to examine how structural causes, such as racism, contribute to these disparities. Adopting critical theories on race and intersectionality, this study centres race and systemic racism while considering the intersection of dementia with other social locations in the analysis. Using institutional ethnography (IE) as its methodology, the study began by interviewing Chinese individuals living with dementia to obtain their standpoint and identify problematics, the tensions arising between their everyday lives and institutional operations. This was followed by analyzing relevant texts to reveal ruling relations and dominant discourses that mediate these experiences. A key analytical step involved linking interview and textual analysis to identify disjunctures where these ruling relations are visible. Key findings reveal that experiences are textually mediated by four interconnected themes: the dominance of the biomedical lens, which prioritizes physical aspects and professional knowledge over holistic care and lived experience; the impact of neoliberalism which frames independence as a personal responsibility and dependence as a societal burden; governmental policies expectation of families to provide care; and, the invisibility of the intersection of race with age and dementia in texts which contributes to structural racism. The significance of this study lies in its reframing of dementia care, situating Chinese lived experiences within broader structural forces. It reveals the dominance of the biomedical lens, acknowledges cultural importance while challenging cultural essentialism, and exposes structural racism. The findings underscore the need for more holistic and equitable care, with implications for practice, policy, theory, and future research.
EXPLORING THE USE OF FORMAL SUPPORT SERVICES BY CHINESE PEOPLE LIVING WITH DEMENTIA: AN INSTITUTIONAL ETHNOGRAPHY by KAREN LOK YI WONG A THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (Social Work) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) October 2025 © Karen Lok Yi Wong, 2025 ii The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the dissertation entitled: Exploring the use of formal support services by Chinese people living with dementia: an institutional ethnography submitted by Karen Lok Yi Wong in partial fulfilment of the requirements for the degree of Doctor of Philosophy In Social Work Examining Committee: Dr. Deborah O’Connor, Professor, Social Work, UBC Supervisor Dr. Lillian Hung, Associate Professor, Nursing, UBC Supervisory Committee Member Dr Hannah Kia, Associate Professor, Social Work, UBC Supervisory Committee Member Dr. Laura Hurd, Professor, Kinesiology, UBC University Examiner Dr. Amy Salmon, Clinical Associate Professor, Population and Public Health, UBC University Examiner Dr. Hai Luo, Associate Professor, Social Work, University of Manitoba External Examiner Additional Supervisory Committee Members: Dr. Miu Chung Yan, Professor, Social Work, UBC Supervisory Committee Member iii Abstract This thesis aims to examine the everyday experiences of Chinese people living with dementia using formal support services in Vancouver, Canada and uncover how broader institutional practices and embedded systemic oppression shape the experiences. Research to date documents that racialized individuals are less likely to use formal services but fails to examine how structural causes, such as racism, contribute to these disparities. Adopting critical theories on race and intersectionality, this study centres race and systemic racism while considering the intersection of dementia with other social locations in the analysis. Using institutional ethnography (IE) as its methodology, the study began by interviewing Chinese individuals living with dementia to obtain their standpoint and identify problematics, the tensions arising between their everyday lives and institutional operations. This was followed by analyzing relevant texts to reveal ruling relations and dominant discourses that mediate these experiences. A key analytical step involved linking interview and textual analysis to identify disjunctures where these ruling relations are visible. Key findings reveal that experiences are textually mediated by four interconnected themes: the dominance of the biomedical lens, which prioritizes physical aspects and professional knowledge over holistic care and lived experience; the impact of neoliberalism which frames independence as a personal responsibility and dependence as a societal burden; governmental policies expectation of families to provide care; and, the invisibility of the intersection of race with age and dementia in texts which contributes to structural racism. iv The significance of this study lies in its reframing of dementia care, situating Chinese lived experiences within broader structural forces. It reveals the dominance of the biomedical lens, acknowledges cultural importance while challenging cultural essentialism, and exposes structural racism. The findings underscore the need for more holistic and equitable care, with implications for practice, policy, theory, and future research. v Lay Summary This study examines the experiences of Chinese individuals living with dementia in Vancouver who use formal support services and identifies how broader systemic issues, including racism, influence their experiences, using institutional ethnography (IE). It addresses a gap in dementia research that often overlooks the experiences of racialized people, of whom Chinese are one of the largest groups in Canada. Key findings reveal several challenges: care often focuses too heavily on biomedical aspects and professional knowledge, neglecting a more holistic approach and people’s voices; how policy and practice documents frame independence as a personal duty and dependence as a societal burden, justifying cuts to public services; societal views sometimes place the expectation of care on families; and official texts often fail to acknowledge the unique experiences of racialized individuals with dementia, creating hidden barriers like implicit English proficiency requirements. This research highlights the need for changes in practice, policies, and research. vi Preface The author, Karen Lok Yi Wong, contributed to the identification of the research question, design of the research work, performance of the research, analysis of the research results, and writing of the dissertation. She is the sole author of the dissertation. Ethical approval for this research study was obtained from the University of British Columbia’s Behavioural Research Ethics Board. The certificate number for the study entitled ‘Formal support access of Chinese people with dementia’ is H23-03416. The use of Generative AI in this thesis was limited to the use of Grammarly and ChatGPT for suggestions on enhancing sentence and paragraph structures. vii Table of Contents Abstract ................................................................................................................................ iii Lay Summary ......................................................................................................................... v Preface .................................................................................................................................. vi Table of Contents .................................................................................................................. vii List of Tables ......................................................................................................................... xi List of Figures ....................................................................................................................... xii Land Acknowledgement ........................................................................................................ xiii Acknowledgements .............................................................................................................. xiv Chapter One: Introduction ........................................................................................................ 1 1.1 Understanding of Dementia ............................................................................................. 3 1.2 Understanding the Use of Formal Support Services by Racialized People Living with Dementia .......................................................................................................................................... 9 1.3 Chinese People Living with Dementia ............................................................................. 15 1.4 Theoretical Frameworks ................................................................................................ 18 1.4.1 Critical Theories on Race ........................................................................................ 18 1.4.2 Intersectionality ..................................................................................................... 23 1.5 Research Objective and Question.................................................................................... 25 Chapter Two: Methodology .................................................................................................... 27 2.1 Institutional Ethnography .............................................................................................. 27 2.2 Research Design ........................................................................................................... 32 2.2.1 Scope of Study ........................................................................................................ 33 2.2.2 Establishing the Problematics: Gaining the Standpoint Through Personal Interview ...... 34 2.2.3 Interview Analysis .................................................................................................. 42 2.2.4 Textual Analysis ..................................................................................................... 50 2.2.5 Linking Interviews and Textual Analysis .................................................................... 62 2.3 Working with an Advisor with Lived Experiences ............................................................ 63 2.4 Measures to Enhance Research Integrity .......................................................................... 65 2.5 Ethics .......................................................................................................................... 67 2.6 My Positionality ........................................................................................................... 69 2.7 Chapter Conclusion....................................................................................................... 72 Chapter Three: Story of June: Navigating Dementia amid Service Gaps ....................................... 74 viii Chapter Four: Broader Findings: Examining the Link Between Personal Experience and Textual Policies and Practices ............................................................................................................. 81 4.1 Chapter Overview ......................................................................................................... 81 4.2 “I Told Him I Had an Absent Mind, He Asked Me to Focus on My Diabetes First”: The Dominance of the Biomedical Lens ...................................................................................... 84 4.2.1 Visions of Holistic Health Approach Meet Services Grounded in a Biomedical Lens ....... 84 4.2.1.1 Problematic: Focus on Physical Health and Pharmacological Treatment and Preferences for Holistic Health. ...................................................................... 85 4.2.1.2 The Biomedical Discourse in Texts. ...................................................... 89 4.2.1.3 How the Biomedical Discourse Textually Organizes Practice and Shapes Experiences. ................................................................................................ 91 4.2.2 Tensions Between Lived Experience and Professional Knowledge ................................ 94 4.2.2.1 Problematic: Participants’ Perceptions that Their Lived Experiences are Devalued and Not Recognized by Medical Professionals. ................................... 94 4.2.2.2 Professional Knowledge as Evidence, While People’s Lived Experience as Not in Texts. ................................................................................................ 97 4.2.2.3 How Professional Knowledge as Evidence Textually Coordinates Practice and Shapes Experiences. .................................................................................... 103 4.2.2.4 The Lived Experiences of Cultural and Language Minorities and Women with Dementia Are Even Less Valued. .................................................................. 106 4.2.3 Summary ............................................................................................................. 108 4.3 “The Resources for These Services Are Limited. I Should Not Compete for These Resources with Others” – The Impact of Neoliberalism ....................................................................... 109 4.3.1 Understanding the Active Aging Discourse .............................................................. 111 4.3.2 Acknowledging and Accepting Changes Within the Context of an “Active Aging” Discourse .................................................................................................................... 111 4.3.2.1 Active Aging as A Personal Responsibility in Texts. ............................... 114 4.3.2.2 Active Aging Within a Context of Limited Opportunities: Dementia as Incapability in Texts. ................................................................................... 117 4.3.3 Feeling Undeserving of Services in the Context of Dependence on Services as a Burden to Society ........................................................................................................................ 120 4.3.3.1 Problematic: Experiences of Feeling Undeserving or Being Told to Be Grateful for Services. .................................................................................. 120 4.3.3.2 Dependence on Services as a Burden to Society as Textually Mediated. .... 122 ix 4.3.4 How Austerity Approaches to Aging and Dementia Services Textually Regulate Practices and Shape Experiences.................................................................................................. 125 4.3.4.1 Home Rehabilitation Under the Reactive Approach in Texts. ................... 125 4.3.4.2 Rationing the Provision of Social and Health Care Services Under Narrow and Fragmented Interpretation of Service Responsibilities in Texts. .................... 128 4.3.4.3 Brain Scan Services Under Restrictive Eligibility Criteria in Texts. .......... 133 4.3.5 Summary ............................................................................................................. 135 4.4 “My Daughter Has Her Own Problems Too.” – The Confluence of Participants’ Wish Not to Burden Families and Government’s Expectation of Families to Provide Care .......................... 136 4.4.1 The Disjuncture Between Participants’ Relational Decision-Making and Assumption of Individual Decision-Making in Texts ............................................................................... 137 4.4.2 Problematic: Participants’ Preference to Limit the Burden of Families in Care, but Dependence on Family Due to Gaps in Services ............................................................... 139 4.4.3 The Expectation of Families to Provide Care in Texts ............................................... 142 4.4.4 How the Expectation of Families to Provide Care Textually Mediates Services and Shapes Experiences ................................................................................................................. 147 4.4.5 Summary ............................................................................................................. 149 4.5 “Those Activities Were All in English. I Said If They Were in English, I Would Not Be Able to Understand.” – The Invisibility of Intersection of Race with Age and Dementia ...................... 150 4.5.1 Problematic: Experiences on Challenges Using Services due to Language .................. 151 4.5.2 The Inattention to Race in Dementia Service Texts and How It Textually Organizes Services and Shapes Experiences ................................................................................... 153 4.5.3 The Invisibility of Older Adults and People with Disabilities in Anti-Racist Strategy Texts .................................................................................................................................. 159 4.5.4 Summary ............................................................................................................. 160 4.6 Chapter Conclusion..................................................................................................... 161 Chapter Five: Discussion ...................................................................................................... 163 5.1 Recognizing the Dominance of the Biomedical Lens ....................................................... 164 5.2 Unpacking the Complexity of Culture: Acknowledging Importance, Challenging Essentialization ................................................................................................................ 170 5.3 Exposing Structural Racism ......................................................................................... 176 5.4 Moving Forward – Next Steps ...................................................................................... 180 5.4.1 Practice Implications ............................................................................................ 180 5.4.2 Policy Implications ............................................................................................... 182 5.4.3 Theoretical Contributions and Implications ............................................................. 184 5.4.4 Research Implications ........................................................................................... 185 x 5.5 Chapter Conclusion..................................................................................................... 188 References .......................................................................................................................... 190 Appendix............................................................................................................................ 227 Appendix 1. Interview Guide ............................................................................................. 227 Appendix 2. Consent Form................................................................................................ 228 Appendix 3. Recruitment Poster ........................................................................................ 232 xi List of Tables Table 1: Summary of Research Design ....................................................................... 32 Table 2: Summary of Study Participants ..................................................................... 37 Table 3: An Application of Gilligan’s Listening Guide Approach .................................... 44 Table 4: Exploring the Underlying Meaning of Metaphors............................................. 45 Table 5: Drafting a Story .......................................................................................... 47 Table 6: Thematic Analysis of the Interview Data ........................................................ 49 Table 7: Texts Referenced in the Study ....................................................................... 52 Table 8: Critical Discourse Analysis Strategies ............................................................ 59 Table 9: Thematic Analysis of the Texts ...................................................................... 61 Table 10: An Example of Linking the Themes of Interviews and Texts ............................ 63 xii List of Figures Figure 1: Summary of Findings ................................................................................. 83 xiii Land Acknowledgement I would like to begin by acknowledging that Vancouver, the land on which I conducted my research, is situated on the traditional, ancestral, and unceded territories of the Coast Salish Peoples, including the territories of the xwməθkwəy̓əm (Musqueam), Skwxwú7mesh (Squamish), and Stó:lō and Səl̓ílwətaʔ/Selilwitulh (Tsleil- Waututh) Nations. xiv Acknowledgements First, I would like to thank my supervisor, Dr. Deborah O’Connor, and my committee members, Dr. Miu Chung Yan, Dr. Lillian Hung, and Dr. Hannah Kia, for all their support and guidance. I would also like to thank my lived experience advisor, Granville Johnson B.Ed., for sharing insights that enhanced the quality of the thesis. Moreover, I would like to thank my family and friends, especially my parents, Man Hung and So Kam, and my sister, Lok To, for all their encouragement. Furthermore, I would like to thank the Canada Graduate Scholarships — Doctoral (CGS D) Program, funded by the Social Sciences and Humanities Research Council (SSHRC), for supporting this research. I would also like to thank the UBC Public Scholar Initiative for funding the knowledge mobilization work of this project. Finally, I would like to thank all research participants for sharing their experiences, from which I learned so much. 1 Chapter One: Introduction There is a persistent gap in dementia literature: The experiences of racialized people are often overlooked, along with the structural causes and forms of oppression—particularly racism—that shape their access to and use of services. This omission is troubling, as it obscures systemic barriers and limits equitable care. My research addresses this gap by examining how the experiences of Chinese people—one of the largest racialized groups in Canada—living with dementia are shaped by structural forces and embedded oppressions in their access to and use of services. This chapter situates the study within the existing literature, outlines the theoretical frameworks guiding the research, and presents the research question. This chapter will first trace the development of the understanding of dementia in the literature. Traditionally, dementia has been understood primarily through a biomedical discourse, focusing on the disease itself. Over the past three decades, however, there has been a growing recognition of individuals living with dementia as persons beyond the diagnosis and as citizens with rights. Despite this recognition, much of the literature continues to treat people living with dementia as a homogeneous group, overlooking the diversity of their experiences shaped by intersecting social locations, particularly race, and lacking critical analysis of the power dynamics embedded in these experiences. Subsequently, this chapter will review studies on the experiences of racialized individuals living with dementia in their use of formal support services. This is a particular concern, given that they 2 are less likely to use these services compared to their White counterparts. Existing literature tends to focus on the individual but not the structural causes of this disparity and overlooks the role of embedded systemic oppression, particularly racism, from the perspectives of people with lived experiences. As one of the largest racialized groups in Canada, the experiences of Chinese individuals may warrant further exploration. Their experiences may be shaped in distinct ways by a range of influences, including a more relationally-oriented culture. This chapter will highlight some key cultural influences that may shape the experiences of Chinese people living with dementia. Given the above existing literature, my research will examine how the experiences of Chinese people living with dementia using services are shaped by structural forces and the oppression, including racism, embedded. This chapter will articulate two theoretical frameworks that I will draw on to guide my research: critical theories on race and intersectionality. These frameworks guide my attentiveness to the structural forces and the embedded oppression, particularly racism, within these experiences, as well as to the diverse lived experiences of dementia shaped by intersecting social locations. This understanding of the literature and theoretical frameworks will inform the development of the research questions guiding this study. The main research question guiding this study is: How are the experiences of Chinese people with dementia using formal support services textually mediated and shaped through ruling relations? The sub-questions are: What are the experiences 3 of Chinese people using support services? How are their experiences shaped by textual policies and practices? How are oppressions, including racism, textually embedded? 1.1 Understanding of Dementia Over the last forty years, there has been considerable attention given to understanding dementia. Bartlett & O’Connor (2010) outline four “moments”. The first moment did not recognize dementia; instead, this moment positioned dementia as a normal part of aging or a sign of senility (Bartlett & O’Connor, 2010). The second moment occurred when dementia came to be understood not as a normal part of aging, but as a biomedical condition. This reflects the influence of a biomedical discourse, which has long dominated Western health research and services to this day. Scholars such as Engel (1977), Conrad (2007), Kleinman (1988), Scheper-Huges and Lock (1987) summarized the features of the biomedical discourse. The biomedical discourse is premised on the notion that health is the absence of disease. Hence, it focuses on treating or avoiding the disease. By focusing on the disease or the biological or physical aspects of health, this discourse tends to exclude other influences on health, such as psychological, social, environmental, and cultural factors, resulting in a fragmented understanding of health with limited attention to a person's overall well-being. This discourse also rests on the assumption that there are universally applicable biomedical solutions to health problems. Consequently, it relies heavily on empirical evidence derived from objective, measurable criteria and positions biomedical professionals as the gatekeepers of the evidence. In doing so, it marginalizes the subjective inputs of laypeople. In 4 the case of dementia, dominant understandings in the literature and services have similarly been shaped by biomedical discourse and continue to be influenced by it today, at least in the Western world. Since the late 1970s and early 1980s, dementia has been framed and focused as a brain disease marked by progressive cognitive decline (Bartlett & O’Connor, 2010). This framing has driven extensive research into diagnostic and pharmacological interventions. The third moment marked a growing concern that the biomedical approach to dementia reduced individuals to their diagnosis, neglecting that they are a person, not a diagnosis. In response, a new understanding emerged in the late 1980s and 1990s: the personhood, or humanistic, approach (Kitwood, 1997). The conventional notion held that personhood was necessarily linked to cognitive abilities, leading to the perception that people living with dementia no longer had personhood. This view was challenged by the work of Kitwood (1984, 1993, 1995, 1997) and others such as Sabat and Harre (1992), who introduced a more relational and social understanding of personhood. Kitwood described personhood as “a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being” (1997, p. 8). This new conceptualization of dementia emphasizes that personhood is not solely determined by cognitive functions but is shaped by other factors, such as life histories, relationships, interactions with others, and the surrounding environment. Kitwood’s (1997) well-known equation, dementia = personality + biography + physical health status + neurological impairment + social psychology, captures the multifaceted nature of the experience of dementia. Proponents of this approach argued that at least some, if not a vast amount, of the deterioration experienced by people living 5 with dementia is not caused by the dementia per se, but rather a result of how they are perceived and treated. Building on the personhood approach, Kitwood (1997, 1998) and other dementia scholars (Calkins, 1997; Harrison, 1993; Jenkins & Price, 1996) introduced the concept of person-centred care. This care concept emphasizes centring on the people rather than the disease, fostering meaningful relationships and interactions, and creating supportive environments to meet the diverse needs of individuals. As a result, person-centred care spurred significant interest in developing psychosocial interventions and improving the physical and social environments in which people with dementia live. This reorientation of understanding of dementia aligns with a broader advocacy for a holistic approach in health research and services in light of the limitations of the biomedical approach by both early scholars, such as Engel (1977) and Mead and Bower (2000), and more recent scholars, such as Olshansky (2000) and Yuan (2024). The holistic health approach views health as involving a complex interplay of physical as well as other dimensions of health, such as psychological, social, and cultural dimensions. It therefore emphasizes integrated care, viewing health as overall well-being and emphasizing quality of life rather than only treating the disease (Ventegodt et al., 2016). As part of this movement to recognize the whole person rather than simply the disease, the importance of hearing the voices of those with dementia, and not just their family, began to make its way into research and services. After earlier research on dementia primarily focused on the 6 perspectives of families, Kitwood (1992) began talking directly with people living with dementia. This shift revealed a disjuncture between how families and people living with dementia described their experiences (Bartlett & O’Connor, 2010). While families often focused on their care experiences, the voices of people with lived experiences revealed dementia as a site of stigma and discrimination, often exacerbated by the diagnosis itself. By the 2000s, the personhood approach was recognized as inadequate for understanding the experience of this stigma, discrimination, and related power dynamics. This highlights the need to extend the personhood approach and adopt a new framework. Such awareness paved the way for the fourth moment in understanding dementia: the social citizenship approach. The social citizenship approach, influenced by the human rights discourse, has built upon and critiqued the personhood approach (O’Connor et al., 2022). While the personhood approach emphasizes the immediate relationships and environments of people living with dementia, the social citizenship approach calls for a broader sociopolitical perspective to address the stigma and discrimination they face. Compared with the personhood approach, which suggests that people living with dementia are still people whose well-being was dependent on how others treated them to meet their diverse needs, the social citizenship approach goes further, arguing that they are not only people but also active citizens with the right to be free from stigma and discrimination as well as the right to participate in society, which includes expressing their voices, being heard, and influencing policies and services that affect their lives. Therefore, this approach places strong emphasis on directly engaging with people living with dementia to 7 understand their lived experiences and perspectives (Behuniak, 2010; Gilmour & Brannelly, 2010). While the literature on lived experience in dementia studies has expanded, it has yet to meaningfully account for diversity. The body of work that engages with diverse perspectives remains limited in scope. Some scholars raise that the experience of people living with dementia has been treated as homogenous (Hulko, 2009; O’Connor et al., 2007; Wiersma et al., 2023), with much of the research focused on White, middle-class men. This narrow focus has led to a limited understanding of how living with dementia intersects with other social locations, shaping diverse and complex lived experiences. In response, a growing body of research has begun to explore the lived experiences of people from diverse social locations, such as gender and age. For example, Frazer et al. (2012) examined the experiences of older women with dementia living alone, highlighting their conflicted feelings of eagerness to search for meaningful relationships and feeling vulnerable to opening themselves up. Broders and Wiersma (2022) studied the experiences of middle-aged women with early-onset dementia, showing how their symptoms were often misattributed to age-related bodily changes like menopause and their hopes to advocate for not only themselves but also others living with dementia. Despite these developments, there remains a lack of research on the lived experiences of racialized and cultural minorities with dementia. Some examples of studies looking into this population include the one by Cheung et al. (2022), who explored the experiences of Chinese 8 immigrants with dementia in New Zealand, particularly the challenges of stigma within the Chinese community, and Mazaheri et al. (2014), who examined the experiences of Iranian immigrants in Sweden, captured the feelings of incompetence due to dementia and the love of being cared for by family members, emphasized in their cultural community. Moreover, even when diversity is acknowledged, many of these studies lack a critical analysis of power. For example, drawing on the examples discussed in the previous paragraph by Cheung et al. (2022) and Mazaheri et al. (2014), while these studies highlight culture, they do not address how racism or discrimination as immigrants shapes the experiences. Recognizing this gap, recent scholarship has increasingly called for a more critical, intersectional lens to examine the power dynamics involved in living with dementia (Bartlett & O’Connor, 2010; O’Connor et al., 2022). These studies demonstrate how intersecting forms of oppression shape dementia experiences. O’Connor et al. (2009) illustrate how one Indigenous woman’s experience was shaped by the intersection of Indigeneity, gender, age, and cognitive disability; while a cultural-spiritual understanding of dementia empowered her, it conflicted with dominant biomedical narratives that discounted her symptoms. Similarly, Hulko (2009) found that the intersection of dementia with social locations, particularly socio-economic status, shaped individuals’ emotional adjustment to the condition. Those from privileged backgrounds reported greater emotional difficulty, whereas individuals from marginalized backgrounds reported fewer emotional challenges, as their attention was primarily focused on meeting basic needs. Westwood (2016) highlights how the intersection of dementia, gender, and sexuality complicates access to services for lesbian and bisexual women, who often distrust heteronormative and 9 heterosexist service systems to meet their needs. Baril and Silverman (2024) examine how trans older adults with dementia and their family caregivers face intersecting oppressions tied to cognitive disability and trans identity. For instance, gender-affirming surgeries are often denied based on physicians’ assumptions about age or dementia-related risks. While some studies have examined how social locations intersect with the experience of living with dementia, further inquiry is needed to deepen the understanding of the complex power dynamics within (O’Connor et al., 2022). 1.2 Understanding the Use of Formal Support Services by Racialized People Living with Dementia One aspect of the experiences of racialized people living with dementia which lacks understanding is their access to, and use of, formal support services. Research demonstrates that there tends to be underuse of services by people with dementia and their families (Bieber et al., 2019). However, it also supports that it is a particular issue for racialized people. Research frequently shows that racialized people are less likely than their non-racialized counterparts to use medical-related services, including seeking a dementia diagnosis (Nielsen et al., 2021), specialist care (Drabo et al., 2019), dementia medication (Pham et al., 2018), and community support and residential care (Stevnsborg et al., 2016). Due to this limited or delayed use, some research has found that racialized people living with dementia are more likely to present at emergency and acute care (Saadi et al., 2017). 10 Researchers have proposed various explanations for the lack of use of formal support services among racialized people living with dementia and their families. Much of this work has focused on individual beliefs and behaviours. For instance, studies by Casado et al. (2018) and Mukadam et al. (2011) examine help-seeking attitudes, contributing to the development of tools such as the Attitudes of People from Ethnic Minorities to Help-Seeking for Dementia Questionnaire (APEND) by Hailstone et al. (2017). This individual approach has resulted in explanations that have argued that racialized people living with dementia and their families are likely to perceive dementia as a part of normal aging (Sagbakken et al., 2018) or attribute it to non-medical causes (Czapka & Sagbakken, 2020b). Others point to a cultural emphasis on family caregiving, which can lead to a preference for managing care within the family rather than seeking external support (Boughtwood et al., 2013; Nielsen et al., 2020). While most of the literature has focused on understanding service underutilization as an individual issue, a small body of research has begun to highlight the systemic reasons behind it. This small body of research identifies four structural issues that may promote underutilization. One such cause is the restrictive eligibility requirements for services. This may disproportionality affect racialized people. For instance, many services require a formal diagnosis of dementia (Koehn, 2009) but Pham et al. (2018) suggest that racialized people are less likely than non-racialized people to receive one. Other research has found that immigration status may impact eligibility for services (Nwabuobi et al., 2021), a finding that is particularly relevant in a Canadian context, where most people without citizenship and permanent resident status are racialized (Government of Canada, 2022). This issue becomes more complex in the context of transnational family care, where older adults may stay in Canada on visitor visas to receive 11 support from family members who are immigrants. Despite their extended stays and care needs, they are not formally considered immigrants and are uninsured, limiting their access to healthcare services (Luo & Proch, 2018). A second systemic barrier draws attention to the affordability of services given the lack of public financial support (Biswas et al., 2022). While basic healthcare is considered universally accessible, many needed supports are not covered or are only partially covered by public healthcare systems. This, for example, includes many community support programs, extended home care, and adult day care. This may be particularly relevant to racialized older adults, who are more likely to be of lower socio-economic status, compared with non-racialized older adults. According to Statistics Canada (2023c), in 2020, racialized individuals aged 65 and over generally had lower median incomes and were less likely to receive public and private retirement income compared to non-racialized individuals.1 Importantly, while there may be ways of getting around these barriers, for example, through special subsidies, Koehn et al. (2016) found that professionals often do not provide support for the application due to time constraints. A third contributing cause is the limited availability of services that align with the cultural and language needs of racialized people, many of whom are also immigrants and cultural and language minorities. For example, Næss and Moon (2015) found that racialized people expressed concern that using services that do not reflect their cultural and language backgrounds would 1 According to Statistics Canada (2023c), in 2020, racialized people aged 65 and over generally had less retirement income than their non-racialized counterparts, except for the Japanese population. Only 38% of racialized individuals had private retirement income (median $11,000), compared to 66% of non-racialized individuals (median $17,400). For Canada/Quebec Pension Plan benefits, 72% of racialized individuals received them (median $5,280), compared to 94% of non-racialized individuals (median $8,600). 12 cause harm to them. Similarly, Angel et al. (2022) countered the notion that a culture of family care prevents the use of formal support, instead pointing out that in their research, there was a widespread lack of comfort and distrust in services that did not respond to their cultural and language needs. Vissenberg et al. (2018) demonstrated that the healthcare system is not attuned to diverse cultural and language needs, drawing attention, for example, to how the system assigns equal consultation time to all patients living with dementia, overlooking the extra time needed for those who may struggle with cultural and language barriers, in addition to cognitive impairment. A fourth related issue recognizes the lack of culturally competent professionals as unsettling. According to Danso (2018), a culturally competent professional has adequate cultural self-awareness and understanding of others' cultures. Perceived lack of cultural competency has emerged as an issue in some studies. For example, Vissenberg et al. (2018) found that many professionals do not feel culturally competent to work with cultural and language minorities living with dementia and their families, and Saadi (2017) found that people from cultural and language minorities believed that professionals lack sufficient understanding of their backgrounds in these respects to provide effective support. A closer examination of the shortage of culturally and linguistically appropriate services and professionals reveals that this discussion needs to be grounded in the context of racism. In Canada, 86% of immigrants in Canada, many of whom are cultural and language minorities, are racialized, coming from Asia, Africa, and South America (Government of Canada, 2022), while 60% of racialized people are immigrants (Statistics Canada, 2022). And yet, researchers often 13 approach culture in a neutral sense, without considering or connecting it with race. They tend to conflate race with “culture” and “ethnicity” – Ethnicity refers to a group of people who share cultural characteristics (Satzewich & Liodakis, 2021). Even when race is examined, it does not translate into an analysis of how systemic racism affects the use of services of racialized people living with dementia and their families. (Indeed, Torres (2019, 2020, 2022) notes that research examining racism on older adults remains limited. In other words, the lack of examination is not only in relation to dementia, but across aging studies more broadly.) However, rectifying systemic challenges, such as persistent shortages of services that are culturally and linguistically appropriate, requires more than knowing someone’s culture; it also involves recognizing and addressing systemic racism. While recognizing culture is crucial, it is equally important to acknowledge and tackle the underlying issue of racism. Ahlberg et al. (2019) explicitly note that the formal support service system is not culturally neutral: The Eurocentric culture is deeply embedded in it.. Yet very few studies have explicitly considered systemic racism. Of those that have, for example, studies by Berdai Chaouni et al. (2020) and Jutlla (2015) which interviewed racialized caregivers caring for family members living with dementia, found that their mistrust of professionals is rooted in systemic racism in services. Still, the studies are from the perspectives of families, but not the people living with dementia. A particular gap in the body of literature about service access and use emerges related to understanding from the perspective of those with lived experience of dementia. Of the studies that have examined race, most have focused on the person’s family and professionals (Goodyear 14 et al., 2023; Nielsen et al., 2021). There are a number of reasons that may account for this exclusion. The reluctance of researchers to include people living with dementia in research is recognized as a general issue (Grenier et al., 2024). For example, some researchers have raised concerns about providing informed consent. However, excluding their voices perpetuates that services and policies informed by the research continue to miss the perspectives of people living with dementia. Another reason for excluding the people’s voices is that researchers assume families and professionals can speak for them. This is despite evidence that suggests that the perspectives of family and those living with dementia are often markedly different (Bartlett & O’Connor, 2010; Koehn et al., 2012). A third issue may be that researchers often recruit participants through formal support service organizations, but as suggested previously, racialized people living with dementia are less likely to use services than their non-racialized counterparts (Haralambous et al., 2014). Hence, research documents that the voices of those living with dementia are routinely excluded (Grenier et al., 2024), and racialized people living with dementia have been even more profoundly excluded. A review of the literature, therefore, highlights the need to examine the structural causes and embedded oppression, particularly racism, that shape the experiences of access and use of formal support services by racialized people living with dementia. These structural causes are sustained by broader discourses. While the specific discourses can only be further clarified through the findings of this thesis study, the structural barriers of limited access to affordable and appropriate services identified in the literature have prompted me to consider that neoliberalism may be one possible underpinning discourse. 15 Neoliberalism prioritizes economic efficiency through free markets, deregulation, privatization, individualization, and minimal state intervention (Davies, 2017; Harvey, 2005; Springer et al., 2016; Steger & Roy, 2021). It frames the welfare state as an economic burden (MacLeavy, 2016), promoting rationed support only for those deemed "deserving" (Davies, 2017). Austerity, a consequence of neoliberalism, refers to a reduction in public spending. This includes transferring care responsibilities from the state to individuals and families — a process known as “responsibilization” (Ågotnes et al., 2024; Joy, 2021). This shift disproportionately impacts women, who are more likely to provide informal care (Bookman & Kimbrel, 2011; Statistics Canada, 2023b), reflecting entrenched gender norms that have positioned women as primary caregivers (Oakley, 2018; Walby, 1990; Williams, 1989). Racialized women are even more affected because, for example, systemic racism limits their financial resources to access privately paid services (Hooyman, 2025). 1.3 Chinese People Living with Dementia Among racialized groups in Canada, Chinese individuals may warrant particular attention, as they represent one of the largest racialized populations in Canada, especially in major urban centres such as Vancouver (Statistics Canada, 2021, 2023a). It is also timely to focus on Chinese living with dementia because racism and other oppression against Chinese are within the Anti-Asian racism that has surged in recent years due to the COVID-19 pandemic (Chang & Jim, 2021; Ho, 2021). In addition, the experiences of Chinese people living with and managing dementia may differ from those of their White counterparts, many of whom come from mainstream Eurocentric cultural backgrounds. Race and culture are closely linked and are at 16 times even conflated (Carson Byrd, 2011; Park, 2005). While culture is fluid rather than fixed, with no clear-cut boundaries between cultures and considerable variation within any given culture, culture remains an important aspect that may shape experiences. One aspect of Chinese culture that is commonly discussed in the literature as distinct from Western culture is the concept of relationality (Tsai, 2009). In many Western societies, individualism represents the bedrock of many ideas about social policy and practice (Mackenzie, 2021). One of its key features is emphasizing the primacy of the self over relationships and context when exercising autonomy (O’Connor, 2010). However, scholars, particularly feminist legal scholars, argue that individual autonomy is a Eurocentric patriarchal concept that does not fit with the values of many other groups, such as women (Gilligan, 1993) and many non-Eurocentric cultures, including Chinese culture (Tsai, 2009). Rather than prioritizing individual autonomy, these scholars emphasize the need for understanding autonomy as relational, acknowledging the significance of relationships and social contexts in shaping decision-making. Within this relational lens, some researchers challenge the binary opposition between independence and dependence found in the individual lens, arguing that complete independence is unrealistic and proposing the importance of an understanding that recognizes interdependence, as humans inherently care about and rely on one another (Mackenzie, 2021; Pritchard-Jones, 2017). Filial piety is widely acknowledged in the literature as one – if not the - most important moral virtues in Chinese culture, influenced by the concept of relationality (Phillips & Cheng, 2012). Rooted in Confucianism, filial piety refers to the responsibility of adult children to provide care 17 for their older parents as a way to reciprocate the care they received from their parents when they were young (Chan et al., 2023; Chang & Schneider, 2010). It reflects the influence of relationality because adult children’s care obligations to older parents are constructed in a familial relational context. Research consistently suggests that filial piety influences how Chinese families care for older adults and use formal support services (Wang et al., 2023). It has been suggested that a common societal assumption, reflected in both the literature and formal support systems, attributes the underuse of services of Chinese communities to filial piety, whereby adult children feel a personal obligation to care for their aging parents rather than rely on support (Lai, 2008; Shanley et al., 2012; Wu et al., 2010). However, some researchers challenge this assumption, arguing that filial piety may no longer operate in traditional ways due to societal changes (Lai, 2008; Wu et al., 2010). This growing body of research highlights the impact of increased labour force participation among adult children, particularly women, and a decline in multigenerational co-residence (Chan et al., 2023; Tam et al., 2024). As a result, many adult children struggle to provide direct, hands-on care for their aging parents, and more are beginning to be open to services (Chang & Schneider, 2010; Choi et al., 2024). In addition to adult children, some studies highlight shifting expectations among older spouse caregivers regarding filial piety (Chan et al., 2023). Choi et al. (2024) found that some Chinese older spouses refrain from asking their children for help in caring for their partners, believing their children are more accustomed to Eurocentric culture, where caring for parents is not an expectation. Sun et al. (2014) found that with smaller family sizes, Chinese older spouses prefer using services rather than placing the burden of care on one or two children. 18 1.4 Theoretical Frameworks The previous sections of this chapter reviewed two bodies of literature. The first body of literature examining the evolving understandings of dementia underscores the importance of recognizing the experiences of those living with the condition, from diverse, intersecting social locations, particularly race. It also highlights the need to critically analyze the power relations that shape these experiences. Another body of literature on the use of formal support services by racialized people living with dementia points to the importance of examining the structural forces and embedded oppression, particularly racism, that influence their experiences of service use. It also underscores the need to do so through the perspectives of those with lived experience. Building on these insights, this study aims to explore how the experiences of racialized individuals living with dementia, using Chinese as an example, on service use are shaped by structural forces and embedded oppression, especially racism. To guide this inquiry, I draw on critical theories on race and intersectionality as key theoretical frameworks to guide my understanding of structural forces and embedded oppression, particularly racism, and to centre the diverse lived experiences of racialized populations with dementia from intersecting social locations. 1.4.1 Critical Theories on Race 19 There is a cluster of theories with a critical focus on race. For this thesis, I will refer to them as “critical theories on race.” They include critical race theory (CRT), postcolonial, and decolonial theories. CRT emerged in the 1980s within critical legal studies in the United States, pioneered by scholars such as Bell (1979, 1989, 1992, 1995) and Crenshaw (1995, 2019). These scholars critiqued feminist legal studies for overemphasizing class and gender while neglecting race in the analysis of legal inequalities (Einbinder, 2020; Kolivoski et al., 2014; Maisuria, 2011; Parrish, 2021). In response, they examined racial disparities between Black and White people in the legal system. Over time, CRT has expanded beyond law to various fields, for example, social work (Einbinder, 2020), education (Dozono, 2021), and health (Delman & Adams, 2022). It has also evolved to address racial inequalities beyond the Black/White inequalities, such as Latino/White disparities (Gutiérrez & Lechuga-Peña, 2022; Irizarry & Raible, 2014), and has been applied outside the U.S., including the United Kingdom (Hylton, 2012) and Canada (Bailey, 2021). Critical theories on race have also been extended to include postcolonial and decolonial perspectives by scholars such as Said (1978), Spivak (1988), and Fanon (1952, 1961), to examine the historical legacies of colonization and their ongoing impact on the understanding of race and the development of racism. Critical theories on race highlight the significance of understanding racism in its individual, systemic, external, and internalized forms (Einbinder, 2020; Kolivoski et al., 2014). These theories draw attention to how race and racism shape everyday lived experiences. They have been applied to analyze various fields of services, including primary care (Cunningham et al., 2021), HIV care (Freeman et al., 2017), and maternal care (Adebayo et al., 2022). This small body of literature highlights the importance of understanding race and racism and their impact 20 within different contexts. For example, Marcewicz et al. (2022) conducted a scoping review on palliative care, analyzing findings through the lens of critical theories on race. They found that while most literature can identify differences in the use of palliative care among various racial groups, it only attributes the differences to individual causes, but not systemic racism, and does not include the perspectives of racialized people. Parker et al. (2022) applied critical theories on race to guide the recruitment of a study on how caregiver support and adult daycare programs enhanced the well-being of Black/African American family caregivers of people living with dementia. They raised the importance of acknowledging the mistrust of research among that population due to historical racism. While this research provides important general understanding, to date, the critical theories on the race lens have not yet been applied to understand the experiences of those living with dementia and their use of aging and dementia services. Critical theories on race can encompass diverse perspectives, for example, the emphasis on historical legacies of colonization by decolonial theories, but they generally address the following four key tenets: White supremacy; othering and essentializing racialized people; racialization across systems, Whiteness as property, and colorblindness; and centring the voices of racialized people. White supremacy, the first tenet, is defined by scholars such as Crenshaw (1995) and Harris (1993) as the assumption of the inherent superiority of White people’s worldview over that of racialized people. This belief, they argue, serves to justify the systemic and pervasive mistreatment of racialized people across various domains of life. Scholars such as Bhambra and 21 Holmwood (2021), Mills (2008), and Anghie (2006) traced the history of knowledge production since colonization, shedding light on how the worldview of White people came to be seen as superior. Specifically, these scholars suggest that White colonizers used race to create a hierarchy where they viewed themselves as superior and racialized colonized people as inferior. These colonizers argued that race was a biological, rather than a socio-cultural, construct and excluded racialized people from knowledge production, claiming these groups lacked the qualities necessary to participate and define what constituted knowledge (Burawoy, 2019). While no longer as explicitly stated, Confavreux (2022) argues that colonization, race, and White supremacy continue to profoundly influence contemporary dominant ideologies. Ideologies such as modernity (Bhambra, 2021; Bhambra & Holmwood, 2021), liberalism (Mills, 2008), and sovereignty (Anghie, 2006; Bhambra, 2021) have entrenched norms, standards, and even perceived truths in shaping our understanding of the world and the organization of different systems that all implicitly assume Whiteness as superior. The second tenet recognizes the othering and essentialization of racialized people. Critical theories on race suggest that race and racial categories are socially constructed (Delgado & Stefancic, 2017; Gutiérrez & Lechuga-Peña, 2022). The theories argue that racialized people are constructed as “other” in relation to White people, essentialized to have certain qualities, and excluded from social participation (Kolivoski et al., 2014). One consequence of essentialization is the tendency to frame these attributed qualities as "culture" and treat them as fixed knowledge that can be learned (Danso, 2018; Fisher-Borne et al., 2015). Postcolonial scholar Said (1978) and decolonial scholar Fanon (1952) traced the roots of the othering and essentialization of racialized people back to colonization. Said (1978) argues that White colonizers imagined the 22 "Orient" as a homogeneous group, attributing negative qualities such as backwardness and laziness, and portraying them as static and unchanging. This construction of the Orient, in contrast to the superiority of White colonizers, was perpetuated through Western literature and art, which reinforced these stereotypes and solidified the dominant discourse of what the Orient was supposed to be. Similarly, Fanon (1952; Hook, 2012) suggests that White colonizers stereotyped racialized people, exaggerating negative qualities and justifying racist policies with these imagined traits. The third tenet reflects the presence of systemic racism. Critical theories on race argue that racism is deeply embedded, maintained, and reinforced within societal systems (Einbinder, 2020; Parrish, 2021). Because it is so ingrained, it often goes unrecognized. Harris (1993) contends that privileges are attached to being White in resource allocation, making Whiteness an invisible form of property embedded in the system. While some White people may experience disadvantages due to factors like gender or class, they still retain racial privileges. Harris argues that White people often possess unconscious expectations of these privileges and an anticipation that they will be protected. Critical theories on race also challenge the notion of colour blindness within systems (Kolivoski et al., 2014). Colour blindness assumes that systems are fair by treating everyone equally. However, critical theories on race argue that this perspective fails to acknowledge the unequal playing field of racialized and White people. Treating everyone the same, they suggest, only perpetuates the disadvantage faced by racialized people. One way in which colour blindness is manifested is through the substitution of the words “race” and “racism” with words such as “culture” and “cultural competency,” which sound neutral and colourless, conflating culture with race (Park, 2005). 23 The final tenet is the importance of centring the voices of racialized people. Critical theories on race emphasize that both experiential and systemic racism exist (Einbinder, 2020). As suggested, systemic racism refers to racism that is built into the systems. Experiential racism describes how racialized people encounter and feel the effects of this systemic racism in their everyday lives. These theories recognize the importance of hearing the voices of those who have lived experience with racism as sources of situated knowledge, reflecting their lived expertise on racism (Gutiérrez & Lechuga-Peña, 2022; Harding, 2000; Irizarry & Raible, 2014). It is argued that these voices can be used as counter-narratives – narratives that reveal, challenge, and deconstruct the dominant racist discourses embedded in societal systems (Bell, 1979; Bonilla-Silva, 1997; E. Campbell, 2017; Kolivoski et al., 2014). These theories suggest that while racialized people may experience systemic racism, they may not always be fully aware of it due to its deep embedding within systems. Therefore, voicing their experiences and hearing the experiences of others helps raise awareness and consciousness of systemic racism (E. Campbell, 2017; Delgado & Stefancic, 2017). 1.4.2 Intersectionality While attention to race and racism is pivotal to this study, to ensure a more complex and nuanced understanding of oppression, I drew on the theory of intersectionality. Initially, intersectionality was part of CRT, but it has gradually become a stand-alone lens. Coined by CRT scholar Crenshaw (1989), intersectionality was drawn on to consider how the intersection of racism and 24 sexism attached to Black women’s racial and gender social locations disadvantaged their experiences navigating the legal system in the United States. Since then, the lens has been applied to consider other social locations, such as socio-economic status, ability and sexuality (Mattsson, 2014), and beyond the legal system to examine other systems, such as healthcare (Hankivsky, 2012). Intersectionality recognizes that people have multiple, intersecting social locations, and these social locations are tied to the systems of privilege and oppression (Brah & Phoenix, 2013; Collins et al., 2021; Dhamoon, 2011; Mehrotra, 2010). These social locations, privilege, and oppression shape people’s lived experiences. Most people have both privileged and disadvantaged social locations. However, some people are particularly disadvantaged as they have multiple, intersecting marginalized social locations and are often excluded from society (Collins, 1998a, 1998b). Intersectionality extends analysis of power beyond one social location, such as focusing solely on race, to account for the multiple, intersecting social locations, such as gender and age (Carastathis, 2014; Crenshaw, 1989). Such analysis recognizes the complexities of the experiences. It draws attention to how systemic forces, such as racism, sexism, and ageism, can work in concert in important and unique ways that construct people’s lived experiences. Similar to critical theories on race, intersectionality places people’s voices and experiences at the centre, particularly those with multiple intersecting marginalized social locations (Esposito & Evans-Winters, 2022). As illustrated in the literature on the development of understanding of dementia, dementia has been recognized as a site of stigma and discrimination (O’Connor et al., 2018). However, few 25 studies have applied intersectionality to understand the diverse experiences of dementia and the embedded oppression. Examples mentioned earlier in this chapter have highlighted how intersectionality reveals the complexity of the experiences. 1.5 Research Objective and Question In this chapter, I discussed two key bodies of literature: one focused on the development of understanding of dementia and the other on the use of formal support services of racialized people living with dementia. The review of literature highlighted the importance of examining the following: an understanding of the diverse experiences of people living with dementia from intersecting social locations and a focus on structural causes of challenges of using services for this population and the embedded oppression, particularly racism. In response to the above issues in the literature, the objective of this study is to examine how the experiences of using services of racialized people living with dementia are shaped by structural forces and oppression, through understanding the experience of one racialized group, Chinese people living with dementia. I refer to critical theories on race and intersectionality as theoretical lenses to draw my attention to structural forces, racism and other intersecting forms of oppression, as well as lived experiences. Guided by the research objective, the primary research question is: How are the experiences of Chinese people with dementia using formal support services textually mediated and shaped through ruling relations? The sub-questions are: • What are the experiences of Chinese people using support services? 26 • How are their experiences shaped by textual policies and practices? • How are oppressions, including racism, textually embedded? The research questions above are framed using the language of institutional ethnography (IE), the thesis methodology. I selected IE because it aligns with my research objective, as IE has the strength to uncover the structural forces and oppression. Additionally, it aligns with critical theories on race and intersectionality, as these frameworks and IE share a critical orientation that focuses on power and centers people’s perspectives (Smith & Griffith, 2022). How the theoretical frameworks informed my actual research process will be further discussed. In the next chapter, I will provide a detailed discussion of my thesis methodology. 27 Chapter Two: Methodology In this chapter, I will introduce the methodology of institutional ethnography (IE) and outline the research design, including measures taken to ensure the study's integrity and address ethical considerations, as well as reflections on my positionality as a researcher. I will also describe my collaboration with my lived experience advisor, a Black-American man who has dementia, particularly during data analysis. My theoretical frameworks—critical theories on race and intersectionality—informed every stage of the research process, and I will explain how these lenses directly shaped that process throughout this chapter. 2.1 Institutional Ethnography Given the purpose of my study and research question(s), I required a methodology that enabled me to uncover how personal experience is shaped by broader institutional practices and embedded systemic racism and other forms of oppression. Institutional Ethnography (IE) met this challenge. Developed by Canadian scholar Dorothy Smith—a critical feminist scholar—Institutional ethnography (IE) is centred on exposing the textually mediated ruling relations within institutions and the oppressions embedded in them that shape people's everyday experiences (Campbell & Gregor, 2002; Smith, 1987, 2006; Smith & Griffith, 2022). Consistent with critical theories on race and intersectionality, it facilitates an analysis that addresses power, discrimination, and systemic oppression. The key concepts of IE are outlined below. These include institutions, ruling relations, texts, discourses, problematics, and standpoint. Since Smith's work was influenced by Foucault, Marx, 28 and feminist thought, I will reference these traditions of scholarship when explaining these concepts. Institutions: An “institution” in IE does not refer to a physical building or a specific organization, as the word is usually applied in conventional speech. Instead, IE scholars use the language of “institution” to talk about the systems of complex, intersecting textually mediated ruling relations that coordinate people’s everyday experiences (Smith, 2005). Some examples of an “institution” in IE include the education, legal, and healthcare systems. Smith used the language of “institution” in IE instead of “systems” because she wanted to talk about not just the systems, but also the ruling relations within the systems, where power is embedded, that shape people’s everyday experiences through texts. In this study, I applied the language of institutions to describe healthcare and social service institutions. My research question focuses on accessing and using formal support services. Initially, I was uncertain about the specific composition of the formal support service institutions. However, through interviews with my participants, I discovered that it consists of healthcare and social service institutions, as my participants referred to various services within them when describing their experiences. Ruling relations: Another concept that is central to IE is that of “ruling relations.” The Marxist concept of relations refers to people’s complex connections with each other through their practices that form society (Smith, 2005). Influenced by this understanding, 29 ruling relations in IE are textually mediated interdependent actions that coordinate people’s everyday experiences (Smith, 2005). As Smith (2005, p. 10) describes: ruling relations refer to the “extraordinary yet ordinary complex of relations that are textually mediated, that connects us across space and time, and organizes everyday lives”. They coordinate people’s everyday lives, and people act under the influence of these ruling relations without being directly aware of them; these actions then unintentionally sustain and reinforce the ruling relations. In other words, ruling relations are experienced by people in their everyday lives, but they are not always visible to them and are, in many cases, beyond their control; nonetheless, they are powerful. Texts: A great deal of attention is directed toward understanding “texts” in IE. Texts are understood differently in IE. Specifically, texts in IE refer to not just words, but also images, or sounds, in material forms replicable across times and sites (Smith & Turner, 2014). Examples of texts include law, legislation, policy documents, assessment forms, paintings, podcasts, and TV programs. They mediate, that is, organize, the ruling relations. Texts are “activated,” that is, put into practice, when they coordinate people’s experiences (Turner, 2006). In IE, it is recognized that there are different levels of texts, and the exploration of texts pays attention to the various types of relations between these levels. This is referenced as intertextuality (Smith, 2006). When explaining the concept of intertextuality, Smith suggested that “higher-level texts establish the frames and concepts that control and shape lower-level texts” (p. p226). For example, a policy document is a high-level text 30 that provides the framework for services. The framework shapes the development of practice guidelines, a lower-level text. The practice guidelines inform the service delivery of professionals. There is an assumption that texts should work together. However, intertextuality does not always occur. Sometimes, different levels of texts may contradict one another, and an important objective of IE is to reveal these contradictions and tensions through textual analysis. Discourses: Another common term used in IE is that of discourses. Foucault (1976, 1978) describes discourses as systems of language and practices that shape knowledge and power production and circulation in all societal relations. Smith’s (2005) use of discourses in IE builds on Foucault’s ideas to examine how discourses are experienced in people’s everyday lives. Discourses in IE are part of ruling relations that textually coordinate people’s everyday experiences. They carry a set of assumptions, values and beliefs that are not always immediately visible. They circulate among people and institutions through texts. The difference between discourse and text is that discourse belongs to the broader ruling relation, while text is the medium through which it circulates. Some discourses may be more powerful than others in coordinating people’s everyday experiences. Problematics: IE begins with a search for the “problematics”. This term refers to the tension between people’s everyday experiences and the ruling relations of institutions (Smith, 1987). Put more simply, they are the gaps between what happens in people’s everyday lives and how the institutions operate. A problematic is not the same as a 31 problem. According to Rankin (2017), the key differences between them are as follows: First, a problem can be raised from the top (e.g., by the government), but a problematic must be raised from the bottom, originating from the everyday experiences of people, especially those who are marginalized in society. Second, a problem can be a concept or idea, but a problematic must be a tension between people’s everyday lives and ruling relations. Third, a problematic examines the institution behind an issue, which is greater than a problem. This means that the first step in an IE is to establish the problematic: Researchers cannot know the problematics until they have talked to people with experience of the issue in order to understand their “standpoint” (which will be explained in the next paragraph). IE also suggests that the disjuncture between problematics and texts is where ruling relations operate. Standpoint: IE researchers understand problematics from the “standpoint” of the people their study examines. Standpoint is a concept that comes out of feminist scholarship. It refers to the stance of a group of people at a particular location of the ruling relations. Usually, IE studies people in an oppressed or marginalized position, and standpoint participants in IE refer to this group of people. (In addition, translocal participants refer to the group of people located differently from the standpoint participants in the ruling relations. They are involved in shaping the experiences of standpoint participants via texts through their work.) IE acknowledges that standpoint participants are experts in the knowledge of their everyday experiences, namely, situated knowledge. IE starts from the standpoint of people at a local level and looks up to understand the textually mediated ruling relations of institutions and the oppressions embedded at a macro level. 32 In summary, IE is a methodology that examines how broader institutional practices and systemic oppression shape people’s everyday experiences. IE investigates "institutions", complex systems of "ruling relations" coordinated through "texts," in order to understand how they organize people’s lives. It begins with the search for "problematics," tensions that arise between individual experiences and institutional operations, primarily by understanding the "standpoint" of those being studied, especially marginalized groups. These ideas associated with IE guided the design of this study. The following section will discuss how they are applied in my research design. 2.2 Research Design IE principles underpin this study. Recognizing the importance of identifying the problematics, the first step of this research was to recruit and interview participants – Chinese people living with dementia – in order to understand their everyday experiences. Armed with this insight, the next step of the research was to search for and select relevant texts. The research then analyzed the ruling relations in texts and how they mediated people’s experiences. I chose to include interviews and textual analysis in my research design because IE prioritizes them as the best sources to achieve the aim of IE, that is, uncovering the problematics and ruling relations of the institutions (Smith, 2005). Table 1 shows a summary research design. Table 1: Summary of Research Design Sources Data generation Data analysis Aim Participant interview (n=19, including 8 Semi-structured Interviews Gilligan’s Listening Guide To obtain the standpoint of 33 Sources Data generation Data analysis Aim from stage 1 and 11 from stage 2) In person, phone, Facetime, or Zoom Metaphor analysis Narrative inquiry Thematic analysis participants and identify problematics Texts (e.g., policy documents, practice guidelines) (n = 14) Search and selection for texts guided by the standpoint of participants obtained from interviews Critical discourse analysis Thematic analysis To identify ruling relations, including discourses n/a Linking themes from interviews and textual analysis To identify disjuncture and how ruling relations operate 2.2.1 Scope of Study A main benefit of this study is that it draws on the standpoint of those living with dementia. As noted, the voices of racialized people with dementia are underrepresented in the literature, which tends to prioritize the views of families and professionals (Haralambous et al., 2018; Nielsen et al., 2021). Recognizing this as a major gap in existing knowledge, I deliberately chose not to interview them in this research. As a social worker with extensive experience in aging and dementia care and as the main care support person of my aging parents, I am familiar with the service systems and professional and family perspectives. I was concerned that including professionals and families might inadvertently shift my focus away from those living with dementia. However, I am aware that not including their perspectives may have limited some insights that might have been gained from this study otherwise, which I will further discuss in Chapter Five for consideration of future research. 34 Also, this study intentionally chose to focus on Chinese but did not include other racialized groups. As mentioned, Chinese is one of the largest racialized groups in Canada. In addition, uncovering structural practices and oppression is a complex and variable process. I believed I could gain deeper insights by anchoring in the experiences of one racial group, especially a group with which I already have close affiliation and connections. Specifically, as a Chinese, I am situated to be able to access this hard-to-reach population, which may not speak English. The language barrier may contribute to the limited literature on Chinese people living with dementia, as it makes this population more difficult to reach in research (Wong et al., 2024). I can explore the topic in the language of the participants, facilitating richer and more nuanced data collection. Moreover, I was concerned about the pragmatics of involving a wider racial and cultural diversity, recognizing that the more diverse the sample, the larger the sample I would need. This study was being carried out under both time and resource constraints as a Ph.D. project. 2.2.2 Establishing the Problematics: Gaining the Standpoint Through Personal Interview Consistent with IE, the purpose of personal interviews was to get the standpoint of those who have experienced the issue I am exploring – in this case, the use of formal support services by racialized people living with dementia – and establish the problematics. In my research, this meant identifying and interviewing Chinese people living with dementia. There were two stages in this process. First, as part of a larger Canadian Institutes of Health Research (CIHR)-funded study focused on stigma and discrimination in dementia,2 I interviewed eight Chinese people 2 The larger study is titled “Flipping the Stigma,” funded by the Canadian Institutes of Health Research (CIHR), co-led by Professor Alison Phinney, Dr. Jim Mann, and Professor Deborah O’Connor. 35 with a diagnosis of dementia about their experiences living with dementia (Wong et al., 2024). An important theme that emerged during these interviews was the interface between their personal experiences and the use of formal support services. As the first official step in my Ph.D. research, I reanalyzed these interviews, focusing on a better understanding of this interface (Wong et al., 2024). These interviews provided the foundation for a second stage of interviews focused explicitly on the experiences of using formal support services. In particular, the insights from re-analyzing these eight interviews helped refine the questions of the next round of interviews. For example, I added a question about what formal support services did not work, as I learned from the previous interviews that some participants articulated this issue better when asked directly. In this second stage of interviewing, I used purposive sampling to recruit an additional 11 participants. To qualify, participants had to: 1) Self-identify as Chinese; 2) Self-identify as living with dementia, cognitive or memory decline – this more inclusive description related to memory functioning was used because literature suggested that some Chinese people living with dementia-related changes might not identify themselves as living with dementia, but would use the latter terms (Zhang et al., 2020b, 2020a); 3) Be capable of consenting to participation, or be capable of asking consent from somebody else, 4) Be able to speak English, Cantonese, or Mandarin3; and 5) Have had some involvement with formal support services. Guided by intersectionality and critical theories on race, to capture the complexity of experiences from 3 Cantonese and Mandarin are the Chinese languages I can speak. I did not interview people who spoke other Chinese languages because I would need to use an interpreter and ensure the interpretation quality, which would be too complicated for a thesis project. Additionally, the participant might feel distant from me, as we would need to communicate through the interpreter, and hence, it would be hard for us to build rapport. 36 intersecting social positions, I sought a diverse sample of Chinese people living with dementia in terms of gender and age. Chinese people living with dementia are considered a hard-to-reach population, as research suggests they often experience social isolation due to factors such as language barriers and negative encounters with formal support service systems (Boughtwood et al., 2011). To reach socially isolated individuals and ensure a diverse sample, I employed multiple recruitment strategies, including: 1) Creating two advertisements for Chinese television media. This venue was used because it was recommended as a primary information source for Vancouver’s older Chinese community by a service provider at the BC Alzheimer’s Society, who works with Chinese people living with dementia. Five people were recruited through this venue. 2) Distributing recruitment posters (See Appendix 3) to various formal support service institutions that were known to have Chinese clients. I included service institutions that were both ethnoculturally specific and more generic or mainstream. These included the Alzheimer’s Society BC and the older adult service department of the community mental health and settlement service institutions. IE does not require a specific sample size but stipulates the principle that interviewing should occur until the researcher feels that they understand the standpoint of the people (Campbell & Gregor, 2002; Dalmer et al., 2018; Smith, 2006). In this study, I collected and analyzed data simultaneously, constantly meeting with my supervisor to discuss my preliminary analysis. 37 Recruitment stopped when we felt I understood the participants' standpoint. In total, I interviewed 11 participants in the second stage, which, combined with the eight participants from the previous study, totalled 19 participants. There are no significant differences in characteristics between the first-stage and the second-stage participants. Table 2 gives a brief description of each participant with whom I spoke. The names are pseudonyms. If participants did not express a preference for pseudonyms, I assigned one for them. There were six men and 13 women. The age range was from mid-50s to 90. Table 2: Summary of Study Participants Name Age and gender Description Anthony 71, male Anthony lives with his wife in a self-owned house. He has been diagnosed with mild cognitive impairment. He speaks good English. He has recently connected with the Alzheimer’s Society and is exploring services. Becky 71, female Becky lives with her husband in a self-owned apartment. She has had repeated admissions to the hospital due to falls and was diagnosed with Parkinson’s after one of the falls. She used to speak good English, but she gradually lost it due to cognitive decline. She has an extended family who live abroad and are physicians, and they provided remote support. She is using adult daycare, home support, and home rehabilitation services. Catherine 68, female Catherine lives alone in a subsidized housing unit for seniors. She has a supportive but busy daughter who lives locally and is a nurse. She has been experiencing cognitive impairment but has not yet been diagnosed. She is negotiating a diagnosis with her family physician. She also has severe back pain. She speaks limited English. Chelsea 79, female Chelsea lives alone. She has a son who lives locally. She used to look after her mother with dementia before she passed away. She is aware of memory problems and is seeking a diagnosis. She can speak English, but she is not confident. Grace Late 50s, female Grace lives alone in a rented apartment. She has been negotiating with her family physician for a diagnosis of dementia and has recently received a diagnosis. She used to 38 Name Age and gender Description speak good English, but she gradually lost it due to cognitive decline. She has recently lost her job, and she perceives that it is related to her dementia. She is looking for opportunities to volunteer. June 77, female June lives with her husband in a self-owned house. They have two busy daughters who live locally. She is a Christian and is involved with a Bible Study group. She has been diagnosed with dementia. She speaks limited English and is gradually losing it due to cognitive decline. She wants to join a self-support group. She is followed by the older adult mental health team. Her experience will be presented as a story in the next chapter. Ling 73, female Ling lives alone in her self-owned apartment. She has two children who live locally. She speaks limited English. She is experiencing cognitive decline and is seeking a diagnosis. Maria 83, female Maria shares her self-owned house with her sister-in-law. She has been widowed for about half a year. She is noticing memory loss and is seeking a diagnosis. She also has physical challenges with mobility. She is exploring admission into a long-term care facility due to physical and cognitive decline. Mr. Zhang Late 80s, male Mr. Zhang has been diagnosed with dementia for about four years. He lives with his wife in a subsidized apartment for seniors. Due to his dementia and his wife’s physical decline, they are seeking in-home support services in the building. Also, he is followed by the older adult mental health team. Neither he nor his wife speaks English. They have a son who lives locally, who is very busy with work, and a daughter-in-law who is Caucasian, with whom they cannot communicate. Mrs. Fong 90, female Mrs. Fong used to live alone in another province but has moved to live with her son and daughter-in-law recently after a fall. She has been diagnosed with dementia. She does not speak English. She is exploring home support services but is more interested in moving into long-term care. Mr. Li Late 80s, male Mr. Li has been diagnosed with dementia and is awaiting assessment for home support services. He lives with his wife in a self-owned apartment. Neither he nor his wife speaks English. Both are Christians. Most of their social network comes from the church, and their pastor and church friends regularly visit them. They have a daughter who lives locally and a son who lives abroad. Nora 81, female Nora lives with her husband in a self-owned house. They have three supportive adult children who live locally. She can speak English, but she is not confident. She is experiencing 39 Name Age and gender Description cognitive decline and is negotiating with her family physician for a brain scan. Paul Mid-80s, male Paul lives with his daughter and her family in a self-owned house. He can speak English, although he does not feel confident in it. He was diagnosed with dementia at the hospital after a fall. He is a Christian and used to be active in volunteering in his church. He is now looking for other opportunities to volunteer. Rose Mid-50s, female Rose lives with her daughter, who is a young adult with special needs. Rose speaks good English but prefers services to be in Chinese as she can express herself better. She works in healthcare. She is experiencing cognitive decline and negotiating with her family physician for diagnosis services (e.g., a brain scan and referral to a neurologist). Sam 63, male Sam lives with his wife in a rented one-bedroom basement apartment. They are both Christians. They regularly attend church services and activities organized by the church. They have two daughters living out of province, one of whom is a nurse. He has been diagnosed with Alzheimer’s. He is followed by a neurologist referred by his family physician. He goes to a social group for people living with dementia and joins activities in the senior community centre and church. He has a home health case manager. He used to speak good English, but is now experiencing a decline in both English and Chinese due to cognitive changes. Simon 75, male Simon and Beth are a couple. They live in an apartment. Both are experiencing cognitive decline and are negotiating diagnosis services with their family physician. Simon used to look after her mother living with dementia. Beth 74, female Susan 78, female Susan lives alone in a subsidized apartment for seniors. She has a daughter and a son who live locally. Due to mental health issues of herself and her family, she has been using mental health services, especially self-support groups, for a long time. She has been experiencing cognitive impairment but has not yet been diagnosed despite two MRIs. She wants to go to a dementia self-support group. She is a Christian and regularly attends church services. She can speak English, but she is not confident. Teresa Mid-50s, female Teresa lives with her husband and daughter in a self-owned house. She has been a full-time housewife and mother for many years. She can speak English, but she is not confident. She is experiencing cognitive decline and is seeking a diagnosis. 40 Adhering to critical theories which emphasize the importance of shared power of decision-making with participants (O’Connor, 2001), each participant chose the interview venue and location they preferred. Most opted for phone, FaceTime, or Zoom (n =14), while two selected their own homes, two requested that I meet them at a community centre, and one person found a quiet area in a shopping center. Those who chose remote options gave the following reasons for this choice: 1) Many had gained familiarity with FaceTime and Zoom since COVID-19 and found this a convenient venue; 2) Three wanted the anonymity of remaining unseen, which was possible using a phone or turning off their camera. 3) Two felt uncomfortable showing the untidy condition of their homes, which they could not tidy due to cognitive impairment and could not meet outside without assistance due to mobility issues; and 4) Two felt their location was too far for me to travel, despite my reassurance. Aligned with the recommended data collection methods of IE, I had conversation-style interviews with participants. I began by inviting them to share what they felt was important about their experiences living with dementia and using formal support services. To provide some structure, I developed an interview guide (see Appendix 1) with open-ended questions to prompt further discussion on topics that participants might not address spontaneously. For instance, if participants did not bring up issues related to their cultural background, I asked directly how their experiences might differ because of being Chinese. The interview process was iterative, and I continually updated the guide based on what I learned from prior interviews. Critical theories on race shaped how I conducted the interviews. They prompted me to ask participants explicitly about their experiences with race and racism in relation to accessing and using formal support 41 services. This theoretical framework also guided me in attending closely to how race informed what I heard throughout the conversations. Each interview lasted between one and one and a half hours. Most participants were interviewed once, but three requested follow-ups to share updates on their service use: One was interviewed three times, and two were interviewed twice. With consent, all interviews were audio-recorded. Participants were given the opportunity to review the transcripts if they wanted. With the exception of one interview, which was conducted in English, all interviews were conducted in Chinese. I transcribed recordings verbatim and analyzed the data in the original language to capture participants' words as closely as possible. Selected quotes in Chinese were translated for the analysis, following translation guidelines which included, for example, back translations: Back translation (Brislin, 1970) means that I first translated the quote from Chinese into English, then translated back into Chinese, and then compared the original Chinese version with the Chinese version translated from the English version to see if there were any differences. If so, I refined the English version accordingly. I am an associate member of the Society of Translators and Interpreters of British Columbia with a private practice in translation, so I felt confident that I could ensure high-quality translations. The focus of this study was on hearing from those living with dementia. However, at the same time, I wanted to respect each participant’s relational context. To address this, I gave participants the choice to be interviewed individually or relationally, namely, with a family member who might be there for moral support but also speak on their behalf when needed. This approach 42 reflects relational autonomy, where decisions are made not just for oneself, but with consideration for those who matter to the individual (Sinclair et al., 2019). Four participants chose to be interviewed with their families (three with wives, one with husband). Two participants, a couple – both with cognitive impairment – were interviewed together. Four others had family members (two with husbands, one with a daughter, and one with a daughter-in-law) present for standby support, such as providing technical help with Zoom, but they did not participate in the interviews. At the start of these interviews, I clarified with participants and families that the focus was on the participants' experiences. I also regularly checked in with participants to ensure the families' input aligned with their perspectives and that they had the space to speak. Participants interviewed with their families appeared more relaxed, with family members only speaking when needed. For instance, one participant struggled to recall a service institution’s name, and his wife provided it, easing his frustration. In contrast, some participants interviewed alone seemed anxious when unable to articulate their thoughts. To ease their anxiety, I reassured them that they could take their time and that it was okay if they could not express everything fully. 2.2.3 Interview Analysis Critical theories on race and intersectionality guided my analysis of the interview transcripts of participants’ experiences (and later, institutional texts). When I identified any instances that I thought reflected race, racism, and/or other social locations, I noted them and discussed them 43 with my Ph.D. supervisor, committee members, and advisor with lived experience for deeper insights. Critical theories on race guided me to identify any references to race, racism, and key tenets of the theoretical framework. I continually asked myself, “What is this snippet of data saying about race or racism?” as an analytical sub-question that guided my reading and interpretation. Intersectionality guided me to pay attention to how other social locations and systems of oppression were represented and intersected with one another. McCall (2005) outlines three approaches to applying intersectionality in analysis, each engaging with social categories, namely, social locations, differently. The anti-categorical approach, rooted in post-structuralism and postmodernism, deconstructs social categories but risks leaving researchers without a clear starting point for understanding lived experiences. The inter-categorical approach, influenced by positivism and post-positivism, uses existing categories to analyze structural inequalities among groups, though it may overlook individual nuances within those groups. The intra-categorical approach bridges these limitations, allowing researchers to engage with categories while maintaining flexibility in their application. My analysis followed the intra-categorical approach, temporarily engaging with race, dementia, and other social locations like gender, age, and immigration status. For example, I explored the variability within one of these categories of people with shared lived experience. This helped me see the similarities and differences within the category. In IE, a problematic refers to the tension between individuals' daily experiences and institutional ruling relations (Smith, 1987). Guided by this definition, I observed tensions between 44 participants' voices and those of others, particularly service providers, as described by the participants. However, these differing voices and tensions were often subtle, making them difficult to discern. To uncover these nuances, I applied Gilligan’s (2015) Listening Guide, which deepened my understanding of participants' standpoints and the problematics. According to Gilligan (2015, p. 72), the Listening Guide is grounded in two key principles: “(a) attending to the first-person voice of the ‘I’ and its associative stream, and (b) listening for different voices that respond to the research question, tracking their interplay and counterpoint.” Table 3 outlines the steps involved in this approach, with examples of how I applied these steps to this study. Table 3: An Application of Gilligan’s Listening Guide Approach Steps of the Listening Guide Approach4 An example of how I applied the steps in my thesis project 1) “Listening for the Plot: Directs the researcher’s attention to the landscape of the interview.” Nora shared that she had once been actively involved in volunteering, but as her cognitive abilities declined, she could no longer continue. However, the staff at the community center persistently encouraged her to keep volunteering. 2) “Listening for the I: Tunes the ear of the researcher to the voice of the other and specifically to the “I,” the first-person voice as it speaks of acting and being in the world … Choose every I statement (pronoun and verb with or without the object) in a given passage or text and list them in order of appearance.” I then “listened for the I.” On one hand, she expressed, “The staff was good to me,” [note objectified positioning], suggesting that she thought their encouragement to volunteer was rooted in care and concern for her well-being. On the other hand, she stated, “I don’t want to volunteer,” highlighting her personal resistance despite their good intentions. 3) “Listening for Contrapuntal Voices: Picks up the tensions, the harmonies and dissonances between different voices.” Finally, I “listened for contrapuntal voices.” I identified a tension between Nora’s voice, in which she expressed not wanting to volunteer, and the staff’s voice, which conveyed the expectation that she should continue volunteering. 4 The steps of the Listening Guide Approach were developed by Gilligan (2015, p. 71). 45 Steps of the Listening Guide Approach4 An example of how I applied the steps in my thesis project I concluded that this tension was problematic: Nora was being pressured to volunteer. Some participants used Chinese metaphors when talking about their experiences. Understanding the underlying meaning of the metaphors could bring me closer to understanding their standpoint. To better understand these metaphors, I turned to the literature on metaphor analysis and followed the steps outlined in the literature (Nguyen & McCallum, 2015; Yanow, 2000). Table 4 provides an example of how I applied these steps in my thesis project. Table 4: Exploring the Underlying Meaning of Metaphors Steps to understand the underlying meaning of metaphors5 An example of how I referenced the steps in my thesis project 1) Listen to the participant’s use of metaphors during the interview, from the recording, or read it from the transcript. Sam said he could not be “年年十八歲”6 during the interview. I took note of this metaphor. 2) Translate and put down the literal meaning of the metaphor. I first translated and put down the metaphor's literal meaning, which was “18 years old every year.” 3) Listen and re-listen to the recording and read and re-read the transcript to understand the metaphor’s context. I looked into the context of this metaphor. He was talking about the changes that dementia brought him. 4) Infer the underlying meanings of the metaphor and outline the rationale for the interpretation. Considering the context of talking about changes from dementia, I inferred that the underlying meaning of this metaphor he wanted to tell was that he could not “stay unchanged forever.” 5 This approach of metaphor analysis was developed from the work of Nguyen and McCallum (2015) and Yanow (2000). 6 The literal meaning of this phrase in English is “18 years old every year.” 46 In the example above, Sam said that it was impossible for him to never change, which suggests his acceptance of the changes that dementia brought him. I later mapped the texts and found a disjuncture between Sam’s standpoint and some of the texts’ hidden message that a person should never change if they actively age. As part of my reflexive process, I recognized that my cultural background as a Chinese person, coupled with the ability to communicate in the participants’ language, enabled me to grasp the contextual meanings of certain metaphors, meanings that might have been lost if the interviews had been conducted in English, like the above example. A principle of rigour in IE is the detailed depiction of participants' experiences, enabling researchers to engage with their standpoint closely (Dalmer et al., 2018). However, IE lacks explicit guidance on how to do so. To address this lack of direction, I turned to the literature on narrative inquiry as a research method, which offers a framework for crafting rich accounts (Clandinin, 2006; Solórzano & Yosso, 2002), making it a valuable complement to IE. This integration has been applied in past IE studies (Dhali, 2024). Narrative inquiry is a research method that studies people's experiences through telling a story (Clandinin, 2006). A narrative consists of three components: a story (a sequence of events and characters), text (the mode of storytelling), and narration (the act of telling the story) (Shenhav, 2015). A story is both the participant's experience and the researcher's interpretation (Clandinin, 2006). The researcher cannot fully bracket themselves but instead acknowledges their role in co-constructing the story. In this thesis, before presenting the key themes of findings, I wrote a story of a participant, June. I weaved her narrative into a story about her experience. By doing this, I illuminated and 47 contextualized the problematics I wanted to highlight in this thesis. I selected June because her story describes the problematics shared by other participants. I drew on Clandinin (2006) and Solórzano and Yosso (2002) for steps on story creation, as both provide clear, widely cited frameworks. Clandinin (2006) offers a foundational structure, while Solórzano and Yosso (2002) integrate critical race theory and intersectionality, the same theoretical frameworks I referred to for my study. Table 5 illustrates how I applied these steps in crafting the story. Table 5: Drafting a Story Steps in drafting a story7 An example of how I referred to the steps to create the story for a participant 1) Conduct an in-depth interview with the participant, actively listening to their experiences and perspectives. I interviewed June twice about her experience. Each interview lasted an hour and a half and was conducted in a conversational style. 2) Draw on theoretical sensitivity informed by critical theories, existing literature, and cultural intuition, shaped by both personal and professional experiences, to uncover the subtle meanings embedded in the data to identify key themes. Specifically, focus on competing narratives, examining tensions between the participant’s personal narrative and broader socio-cultural and institutional narratives.8 I drew on my theoretical sensitivity, shaped by critical theories on race and intersectionality and my cultural intuition, grounded in my lived experience as a racialized, Chinese woman and my professional background as a social worker supporting people with dementia, to identify key themes. One such theme, or competing narratives or problematic, was June’s need for language-appropriate services, which remained scarce within the dementia care context. 3) Search for examples in the data related to the identified themes. I searched for examples that illustrated the identified themes. For the theme example discussed in step 2, I drew on June’s 7 The process for drafting a story was developed by integrating the work of Clandinin (2006) and Solórzano and Yosso (2002). 8 I consider these competing narratives akin to, if not synonymous with, problematics in IE. 48 Steps in drafting a story7 An example of how I referred to the steps to create the story for a participant experience of being unable to join a self-support group due to language barriers. 4) Organize, refine, and clarify the main themes to ensure coherence and depth in the analysis. I discussed the identified themes with my supervisor, Ph.D. committee members, and advisor with lived experience, each providing insights on different aspects. Regarding the theme example mentioned in step 2, my advisor with lived experience highlighted its potential connection to a broader theme on the intersection of racism and dementia. 5) Contextualize the participant's experience, taking into account the temporal, personal, social, and spatial dimensions of their story. I contextualized June’s experience by considering elements such as the onset of her cognitive changes and immigrant background. This helped me better understand the themes, particularly why she faced challenges accessing services in English. 6) Conduct a follow-up interview with the participant to confirm and clarify their understanding of their story. I followed up with June to ensure I had accurately understood her story, including the challenges she faced in accessing dementia services in English. In addition to a narrative analysis of interviews with one participant, thematic analysis was done across the interviews of all participants. Thematic analysis is commonly used in IE studies across diverse topics.9 Recent examples include Stajduhar et al. (2024), exploring barriers to dying-in-place in British Columbia’s palliative care system; Cudjoe et al. (2022), examining challenges in accessing support for foster care leavers in Denmark, and Bailey (2021), revealing colour blindness in restorative justice systems from the perspective of racialized immigrant youth in Calgary. 9 One thing to note is that, unlike the IE researchers mentioned above, some, such as Rankin (2017), emphasize the use of “indexing” rather than “thematic analysis.” Rankin explains that the key difference is that thematic analysis does not necessarily connect to people's standpoints, whereas indexing does. I used the term "thematic analysis" in my study, as it is more familiar to most readers, but my thematic analysis was grounded in the participants’ standpoint. 49 I conducted a thematic analysis of participants' interviews following the approach by Braun and Clarke (2019; 2006) The following outlines the steps I took in conducting the thematic analysis. 1) I listened, re-listened to the recording, and read, re-read the transcripts. 2) I coded participants’ interviews starting from their words. 3) I looked for patterns among the codes. If the codes referred to a similar issue or idea, I grouped them into categories. 4) I looked for patterns among the categories, grouped similar categories into themes. Guided by IE, I also looked for competing but connected categories, namely, the problematics, and turned them into themes. 5) I compared the themes with those from the participant's story mentioned above. I identified alignments and discrepancies to see if they could provide further insights into my analysis. 5) I refined the themes by discussing them with my supervisor, Ph.D. committee, and advisor with lived experience. I also used critical theories on race and intersectional frameworks to refine my conceptualization of the themes. Table X provides an example of how I conducted the thematic analysis. Table 6: Thematic Analysis of the Interview Data 50 Example of a quote Code Category Theme “I told him [physician] about my [cognitive] condition. He said that my blood sugar had risen and that he needed to increase my medication.” (Grace) Professionals’ focus on the physical or pharmacological aspect Professionals’ focus on the biomedical aspect I grouped the competing categories to form the theme “professionals focus on the biomedical aspect, although participants prefer holistic health.” “My objective in joining [the social group for people living with dementia] is to have regular social activity, approaching and interacting with others.” (Sam) Participants’ need for the psychosocial aspect Participants’ need for holistic health I think medication is not 100% good for you. There are pros and cons [of taking medication]. Regardless, there must be some side effects. So, I do not take medication. Instead, I pay attention to nutrition. (Susan) Participants’ concerns about medication and/or need for non-pharmacological treatment 2.2.4 Textual Analysis In the previous section, I established the problematics through interviews and analysis of what I heard from participants with lived experience of the issue, in order to identify tensions and contradictions. I will now turn to identifying the texts being used to shape them. According to IE, 51 the search for texts should start from people’s standpoints (Smith, 2006; Turner, 2006). Based on this principle, the following was my process for selecting texts. • My first step in searching for relevant texts was to seek out those related to participants’ experiences. Although participants did not necessarily mention a particular text, they mentioned services they accessed or used, or they tried to access or use (e.g., home and community care, primary care, support group), as well as organizations that provided these services (e.g., Alzheimer’s Society). Also, there were emerging notions from their interviews (e.g., active aging). Therefore, I searched for texts related to these services, organizations, and notions. • My search for texts did not end here, however. IE’s concept of intertextuality highlights how texts at different institutional levels operate. Applying this to my study, I searched for texts across these levels. In other words, I moved from the texts suggested by participants to begin to look at the texts that helped organize these and/or that reflected the ones they mentioned. For example, as a higher-level text, I considered the BC Dementia Action Plan (BC Ministry of Health, 2012), which outlines province-wide principles of dementia services that inform the development of lower-level texts about practices of services. This text is explicit that its purpose is to “outline province-wide priorities [emphasis added] for improved dementia care over the next two years through the health system and service redesign work [emphasis added] currently underway” (p. 7). Here, “priorities” represent principles of services, while "work" refers to the implementation of services. An example of a lower-level text I reviewed is the BC Practice Guidelines for Primary Care Doctors on Dementia and Cognitive Impairment 52 (Doctors of BC & Ministry of Health, 2023), which directs medical professionals’ service delivery. • I searched explicitly for texts about principles of dementia and aging services, as these were seen as highly relevant for organizing participants’ experiences. The texts on practices of services were selected based on the specific services participants navigated, accessed, or used. • I tried to select texts published within the last ten years, namely, 2014 or later, to reflect the latest development of policies and services. However, I included two earlier documents, the BC Dementia Action Plan (BC Ministry of Health, 2012) and the BC Seniors Healthy Living Framework (BC Ministry of Healthy Living and Sport, 2013). This is because these texts set the foundation for follow-up texts, the BC Dementia Care Guide (BC Ministry of Health, 2016) and the BC Active Aging Strategy (BC Ministry of Health, 2017a). In total, 14 texts were reviewed. For a complete list of the texts reviewed, see Table 7. Table 7: Texts Referenced in the Study 53 Text Reason for selection based on the participants’ standpoint Text about principles or practices of services; national (Canada) or provincial (BC) How it informs participants’ experiences and professionals’ practices How it conceptually connects with the ruling relations, which this study wants to point out Notes Dementia Services BC Dementia Action Plan (BC Ministry of Health, 2012) Participants mentioned the use of or access to dementia services Principles; provincial The major text for dementia services in BC Prioritizing the physical aspect of health Professional knowledge as evidence, while people’s lived experience as not Expectation on families to provide care BC Dementia Care Guide (BC Ministry of Health, 2016) Participants mentioned the use of or access to dementia services Principles, provincial The major text for dementia services in BC Prioritizing the physical aspect of health Professional knowledge as evidence, while people’s lived experience as not Dependence on services is a burden to society, so services are only provided The updated version of the BC Dementia Action Plan is supposed to improve on the previous one, even though gaps still exist, which will be elaborated on in the findings. 54 Text Reason for selection based on the participants’ standpoint Text about principles or practices of services; national (Canada) or provincial (BC) How it informs participants’ experiences and professionals’ practices How it conceptually connects with the ruling relations, which this study wants to point out Notes to those who have needs Expectation on families to provide care Canada Dementia Strategy Act (Minister of Justice, 2017) Participants mentioned the use of or access to dementia services Principles, national The major act on dementia services in Canada Dementia as a burden to society Canada Dementia Strategy Report (Government of Canada, 2021) Participants mentioned the use of or access to dementia services Principles, national The major text on dementia services in Canada Professional knowledge as evidence, while people’s lived experience as not Dependence on services as a burden to society The invisibility of the intersection of race and age/ dementia The follow-up report of the Canada Dementia Strategy Act BC Practice Guidelines for Primary Care Doctors on Participants mentioned that they visited their family Practices, provincial The primary guidelines for primary care physicians on Prioritizing the physical aspect of health, 55 Text Reason for selection based on the participants’ standpoint Text about principles or practices of services; national (Canada) or provincial (BC) How it informs participants’ experiences and professionals’ practices How it conceptually connects with the ruling relations, which this study wants to point out Notes Dementia and Cognitive Impairment (Doctors of BC & Ministry of Health, 2023) physicians when they felt something was not right with their cognition dementia care in BC reliance on the physician Professional knowledge as evidence, while people’s lived experience as not BC Practice Guides for Family Doctors on Referrals (BC Family Doctors, 2022) Participants mentioned that they asked or were referred by their family physicians for a referral to a specialist or other services Practices, provincial The primary guidelines for primary care physicians on referrals in BC Professional knowledge as evidence, while people’s lived experience as not Austerity policy approach – A narrow and fragmented interpretation of services Alzheimer’s Society BC newsletter and webpage on self-support groups for people with early stages of dementia (Alzheimer’s Participants mentioned that they wanted to participate in self-support groups for people with early stages of dementia Practices, provincial The Alzheimer’s Society is the primary provider of self-support groups for people with the early stages of dementia The invisibility of the intersection of race and age/ dementia 56 Text Reason for selection based on the participants’ standpoint Text about principles or practices of services; national (Canada) or provincial (BC) How it informs participants’ experiences and professionals’ practices How it conceptually connects with the ruling relations, which this study wants to point out Notes Society of BC, 2024b) Aging Services BC Senior Home and Community Care Action Plan (BC Ministry of Health, 2017b) Participants mentioned the use of or access to aging services at home and in the community Principles, provincial The major action plan on aging services in BC Prioritizing the physical aspect of health Illness is avoidable Maintaining independence as a personal responsibility Dependence on services is a burden to society, so services are only provided to those who have needs Austerity policy approach - A narrow and fragmented interpretation of services 57 Text Reason for selection based on the participants’ standpoint Text about principles or practices of services; national (Canada) or provincial (BC) How it informs participants’ experiences and professionals’ practices How it conceptually connects with the ruling relations, which this study wants to point out Notes Expectation on families to provide care BC Home and Community Care Policy Manual (BC Ministry of Health, 2023) Participants mentioned the use of or access to home and community care, e.g., home care or home rehabilitation Practices, provincial The primary manual on home and community care in BC Austerity policy approach - Reactive approach to services Expectation on families to provide care Active Aging BC Seniors Healthy Living Framework (BC Ministry of Healthy Living and Sport, 2013) Participants mentioned they were asked to join activities, or they wanted to join activities Principles, provincial The major text on active aging in BC Maintaining independence as a personal responsibility The invisibility of the intersection of race with age/ disability BC Active Aging Strategy (BC Ministry of Health, 2017a) Participants mentioned they were asked to join activities, or they wanted to join activities Principles, provincial The major text on active aging in BC Maintaining independence is a personal responsibility, as illness is avoidable Illness as incapability The follow-up text of the BC Seniors Healthy Living Framework 58 Text Reason for selection based on the participants’ standpoint Text about principles or practices of services; national (Canada) or provincial (BC) How it informs participants’ experiences and professionals’ practices How it conceptually connects with the ruling relations, which this study wants to point out Notes Anti-Racism Strategies BC Anti-Racism Strategy (Government of British Columbia, 2024) Interviews show that there is a lack of language-appropriate services, and my advisor, with lived experience, suggests this is a form of racism Principles, provincial The major anti-racist text in BC The invisibility of the intersection of race and age/ disability Canada Anti-Racism Strategy (Government of Canada, 2019) Interviews show there is a lack of language-appropriate services, and my advisor, with lived experience, suggests this is a form of racism Principles, national The major anti-racism text in Canada The invisibility of the intersection of race and age/ disability Once I had selected the texts, my next step was to determine a strategy for critically reading and analyzing them. Part of the goal is to reveal both the explicit and hidden or implicit messages in the texts. The following will discuss the iterative process of reading and analyzing the texts. 59 IE offers limited guidance on textual analysis, so I turned to the literature on critical discourse analysis (CDA) (Fairclough, 1992; van Dijk, 1993; Waugh et al., 2016). CDA analyzes power in discourses (Waugh et al., 2016). It explores how language is used in a discourse, its relationship with its users, and the social and structural contexts in which it is embedded. Like IE, CDA suggests that: Oppression is perpetuated in dominant discourses via texts, which can be subtle, hidden, and challenging to recognize; and people are entangled in them unconsciously (Fairclough, 1992; Gee, 2011; van Dijk, 1993; Waugh et al., 2016). CDA offers more guidance on strategies for analyzing discourses, which IE does not, making CDA a useful complement to IE (Peacock, 2017). Some IE researchers draw on CDA for these strategies, as seen in Peacock et al.'s (2017) study on equity discourses in Australian education policies and McGibbon et al.'s (2024) study on health equity discourses in Canadian public policies. Table 8 shows the strategies informed by the literature on CDA (Fairclough, 1992; Gee, 2011; van Dijk, 1993; Waugh et al., 2016), with an example of what the process looked like in my study. One thing to note is that these strategies were not applied consistently or implemented in a specific order across all the texts reviewed; their use varied depending on the individual text. Table 8: Critical Discourse Analysis Strategies 60 Critical discourse analysis strategies10 An example of how I applied the strategies in the thesis project 1) Understand the context of the text, e.g., where and when the text is published, and the content of the text I referred to the text about the principles of home and community services for older adults in BC, published in the Senior Home and Community Care Action Plan by the BC Government (2017b, p. 2). It states, “While it is not government’s role [emphasis added] to provide for all quality of life considerations, there are many existing community supports [emphasis added] that can and should be engaged to support the care of seniors from a holistic perspective along with health-care services”. 2) Ask critical questions about the text, e.g., What is included and excluded? What is explicit and implicit, or hidden? Who is seen and not seen? I asked myself who is seen and not seen in the text. “Government” is seen, while people who provide “community supports” are not specified. Thinking in a community context, I realized that these people, who are not specified, are likely to be family members, who are the main providers of care at home. 3) Reflect on how insights identified in 2) may privilege and marginalize certain groups of people, which helps understand the embedded power I reflected that the text privileges the government by explicitly limiting its role in providing services, while implicitly marginalizing families by imposing responsibilities on them to fill these gaps, regardless of their preferences. 4) Think about what strategies are used in the text that reinforce power I noticed that two strategies are used. A hidden strategy is employed to marginalize families by secretly imposing responsibilities on them to provide care without direct reference to them. In addition, a comparative strategy is at play: The text reinforces the imbalance of care responsibilities between the government and the family by juxtaposing their responsibilities within the same sentence. Together, these arguably reinforce the “expectation of the family to provide care”, 10 The CDA strategies were developed by referring to CDA literature (Fairclough, 1992; P. J. Gee, 2011; van Dijk, 1993; Waugh et al., 2016). 61 Critical discourse analysis strategies10 An example of how I applied the strategies in the thesis project which will be further explained in Chapter Four alongside an analysis of other texts. I applied CDA strategies only to the texts, not the interview analysis. This is because the interviews were conducted in Chinese and translated into English, leading to inevitable translation losses. This limited my ability to focus closely on the wording. Additionally, CDA is mostly applied to English sources, with limited guidance on its use for other languages. Nonetheless, I did attempt to apply some CDA strategies, such as analyzing metaphors, when examining the interview transcripts. Similar to participants’ interviews, I conducted a thematic analysis per the approach by Braun and Clarke (2019; 2006) of the texts. The following explains the steps. 1) I read and re-read the texts. 2) I coded the texts. 3) I organized the codes into categories by grouping together those that reflected similar ideas or issues. 3) I identified patterns across the categories and clustered similar ones together to form themes. 5) I refined the themes by discussing them with my supervisor, committee members, and advisor with lived experience. Table 9 provides an example of how I conducted the thematic analysis. Table 9: Thematic Analysis of the Texts 62 Code Category Theme Evidence-based services and policies Professional knowledge as evidence to inform services and policies I grouped the categories into a theme and named it “prioritizing professional knowledge.” Research findings as evidence Surveillance data as evidence Involvement of professionals in service and policy development Service and policy development primarily rely on professionals, but not people with lived experiences Missing or unclear involvement of people with lived experience in service and policy development Physicians make dementia diagnoses primarily based on professional knowledge Physicians provide dementia care primarily based on professional knowledge Physicians make or accept referrals primarily based on professional knowledge 2.2.5 Linking Interviews and Textual Analysis According to IE, interview data and texts are interrelated (Smith, 2006). I linked the themes from both in the following way: 1) Related themes from the interview data and texts were grouped together. 2) I then compared the themes from the interview data and texts to identify disjuncture between them. I drew on my theoretical frameworks and the methodological framework of IE to help me consider the data. For example, a common disjuncture highlighted in IE literature is the discrepancy between expectations and experiences of services (Smith, 2006); I also found this in my data. 3) According to IE, the disjuncture represents where the ruling relation operates (Smith, 2006). Therefore, the process of identifying the disjuncture guided me to identify the ruling relations. 63 4) Through an iterative reading and discussions with my supervisor, Ph.D. committee, and advisor with lived experience, the disjuncture and ruling relations were refined further. Table 10 provides an example of this process. Table 10: An Example of Linking the Themes of Interviews and Texts Themes / Problematics from interviews Themes from texts Disjuncture and how ruling relations operate Participants preferred formal support services over family care because they did not want to burden their families, but they needed to depend on their families due to the service gaps. Expectations of family care, both implicitly and explicitly Informed by IE literature that one type of disjuncture is a discrepancy between what people expected and what they experienced, I put, “participants voiced a preference for formal support services over reliance on family members, but institutional texts stated explicitly an expectation on families to provide care” for the disjuncture and “the expectation of families to provide care textually mediate families to fill the service gaps” for the operation of ruling relation. 2.3 Working with an Advisor with Lived Experiences Early in the research process, I invited the collaboration of Granville Johnson, B.Ed.11, to assist in my research process. Granville self-identifies as a person living with dementia from the Black community. He has been a dementia advocate and has been raising awareness about the 11 I am naming my advisor and his credentials as is his stated preference. 64 intersection of stigma against dementia and oppression related to other social locations, especially racism. I discussed with him how he would like to be referred to in my thesis project. We considered both “advisor” and “mentor.” He pointed out that an advisor’s role is narrower, typically focused on providing guidance for a specific project, whereas a mentor supports a mentee’s broader personal and professional growth. However, he expressed that he was comfortable with either term. While I saw him as both an advisor and a mentor, "advisor" seemed more fitting in the context of this thesis. Ultimately, we concluded that "advisor" was the better term. We held regular one-hour Zoom meetings every six weeks, during which I updated him on my progress, presented my data analysis, asked questions, and invited his feedback. His unique position as both an insider (a racialized person living with dementia) and an outsider (not Chinese) brought valuable perspectives that enriched my analysis. One example of his impact was when I noticed that some participants seemed to experience systemic racism due to the lack of language-appropriate dementia resources, yet they did not explicitly mention race. I wondered aloud whether I was being “too sensitive” to racism. It was his opinion that I was on the right track, emphasizing that the absence of language-appropriate resources for a specific racial and cultural group is, in itself, a form of racism. Another instance was when I struggled to find texts on dementia services that addressed race or anti-racism literature that acknowledged dementia, disability, or aging. Again, I turned to Granville for his insights. Drawing from his advocacy work, he validated that it was also his impression that there was a gap, suggesting that this gap existed because both the dementia and anti-racism communities often failed to recognize their intersection and the complexities of living with dementia as a racialized person. He affirmed that 65 from his perspective, not only was I on the right track, but my research was also addressing a critical and overlooked issue. As an advisor, he provided guidance, but the decisions on how to incorporate his advice remained mine. For instance, he suggested interviewing service providers to understand their experiences working with Chinese individuals living with dementia. While I recognized the value of this approach, I was concerned that it might shift the focus away from the standpoint of Chinese people living with dementia, which was central to IE. I was also aware of limited resources and time to do this properly. I discussed this concern with my supervisor and ultimately chose not to pursue this suggestion for my current study. However, I recognized its potential value and incorporated it into my future research plans. 2.4 Measures to Enhance Research Integrity The following section outlines the measures taken to enhance the research integrity of my thesis project. These measures are informed by, aligned with, and firmly grounded in my critical theoretical lens and methodology. Notably, conceptions of rigour within a critical lens and IE may differ from those in post-positivist paradigms and conventional research methodologies due to their distinct epistemological foundations (Lather, 1993). One thing to note is that, as suggested earlier, IE as a methodology is founded on a critical lens. Therefore, it is not surprising that IE shares fundamentally congruent premises with other critical approaches. For example, both approaches to rigour emphasize promoting the perspectives of marginalized people. Even though the measures to ensure this rigour, as shown below, might be 66 slightly different, this did not cause any challenge related to accommodating both approaches in this study. From a critical lens, rigour is grounded in principles of power-sharing, amplifying marginalized voices, driving social change, and challenging traditional understandings (Levitt, 2021). In alignment with this perspective, I amplified marginalized voices by interviewing people with lived experience and maintaining these voices as central throughout the study. I adopted a conversational approach rather than a structured interview format to make it easier for them to share their experiences and perspectives more comfortably and naturally. Also, I engaged an advisor with lived experience in data analysis for critical insights. Furthermore, I practiced ongoing reflexivity by critically examining my positionality as a Chinese social worker supporting individuals living with dementia, yet not experiencing dementia myself. This reflection enabled me to consider how my social locations influenced the research, ensuring awareness of my perspectives, potential biases, and power. [For more details, please see the section “My Positionality.”] IE upholds two main principles of rigour. The first principle is “the researchers’ faithfulness and closeness to the concrete descriptions and tellings of participants’ accounts” (Dalmer et al., 2018, p. 55). In accordance with this principle, when interviewing participants about their everyday experiences, I encouraged participants to tell me more and checked in with them if there was anything they wanted to say but did not. Furthermore, consistent with recommendations by Dalmer et al. (2018) and Rankin (2017) in writing about participants’ everyday experiences, I described them, providing contextual details and avoiding conceptualizing them using abstract 67 theories. The second principle of rigour in IE is alignment with IE’s aim: uncovering the institutional practice through ruling relations (Rankin, 2017). To maintain this focus, as recommended by Rankin (2017), I formulated tentative problematics soon after starting data collection and analysis, using them to remind me to stick to IE’s aim, because, as suggested, ruling relations operate in the disjuncture between problematics and texts. 2.5 Ethics This study received ethics approval from the UBC Ethics Board and adheres to the following ethical principles: 1) As noted, studies on racialized people living with dementia often exclude them by raising concerns about their capacity to consent to participation. In response to this concern, I adhered to the principle of presumed capability. According to BC law (BC Government, 1993), presumed capability asserts that “until the contrary is demonstrated, every adult is presumed to be capable of making decisions.” As a social worker with specialized training in capability assessment, I used my clinical judgment to evaluate whether participants were able to provide informed consent for this study. 2) However, I acknowledge that people living with dementia can be a vulnerable population, and their capabilities may vary. To address this, I drew on Dewing’s (2007) concept of process consent, which recognizes that the capacity to consent is situational and can be supported through an enabling and caring relationship. For example, I asked participants to choose the location and venue of the interview to ensure they felt comfortable and at ease. Also, the concept of process consent suggests that consent should be a continuous process throughout the study. 68 Therefore, I reminded participants about the study's objective and re-explored their consent to participation before, during, and after the interview. 3) To uphold ethical standards in this study, I followed the six principles for involving people living with dementia in research, as outlined by the Dementia Engagement and Empowerment Project (DEEP) (2023)—a collaborative group of people living with dementia and their allies. These principles and examples responding to them in the study are as follows: a) Working in real partnership: I minimized power imbalances by using clear, simple language and avoiding jargon during interviews with people living with dementia. b) Respect and acknowledgment: I adapted the interview process to respect and acknowledge participants' diverse abilities, checking in regularly to ensure comfort and offering breaks based on their physical and cognitive abilities. c) Safety and well-being: I ensured participants' safety and well-being by striking a balance between protection and respect for their autonomy. For example, when a participant became emotional describing her negative experience using services, I offered a supportive space, reassured her, and respected her choice to continue. d) Informed consent and capacity: I ensured ongoing informed consent by regularly checking in with participants about their understanding of participating in the study and their comfort and willingness to continue. e) Confidentiality and anonymity: I removed identifying details in the study to protect participants' confidentiality and anonymity unless they requested otherwise. f) Information that is simple, accessible, and open: I provided clear, simple information about the study to participants and regularly checked their understanding of it, encouraging questions to ensure informed decision-making on participation. 69 2.6 My Positionality Practicing ongoing reflexivity is a critical piece of my methodology, IE, to ensure rigour (Ono, 2023; Smith, 2005). Reflexivity means that the researcher understands their positionality and reflects ongoingly on how it influences different aspects of their research, such as topic formation, data collection, and data analysis (Berger, 2015). For example, the researcher may reflect on how their social positions influence what they can or cannot see or hear, or their biases and assumptions, influencing how they construct knowledge. The researcher may also reflect on what power is involved in their social locations in their relationship with their participants and, ethically, how they may influence them. My positionality has influenced various aspects of this study. It is essential to make my positionality explicit so that readers can understand how it has shaped my research process, especially my interpretations of data. I position myself as both an insider and an outsider in relation to Chinese people living with dementia. As a Chinese woman, I share commonalities with my participants, such as culture, language and the experience of racism. Additionally, I am an immigrant. While immigration status was not a recruitment criterion, all participants in this study are immigrants. I share the experience of challenges as an immigrant, such as a language barrier. However, I am also an outsider, as I do not live with dementia. Also, many participants are older adults, which I am not. However, my professional and family background is related to these areas. I have worked as a social worker specializing in elder care for a decade, supporting older adults, many of whom have dementia and/or identify as Chinese. My experience spans various care settings, including 70 community services, long-term care, acute care, and rehabilitation. Also, I am the main care support person for my aging parents, who are using aging services. The motivation for this research stems from my practice as a social worker with Chinese people living with dementia, during which I saw that they encountered significant service gaps and systemic oppression, including racism. This study emerges from a desire to critically examine these forms of oppression and advocate for meaningful practice and policy changes. I practiced reflexivity throughout this study by continuously interrogating my positionality and its influence on my research. For example, I constantly discussed with my supervisor, Ph.D. committee, and advisor with lived experience, ensuring a more critical and balanced perspective. I also asked myself critical questions, such as: How does my own experience as a Chinese relate to this study? How has my background as a social worker influenced this study? How did my social location as a person not living with dementia privilege me in ways that I might not be aware? My own social locations as a Chinese and a social worker have particularly shaped my research. For example, they limit my ability to recognize some aspects of the research. My social location as a social worker initially prevented me from understanding the participants from their perspective. With ten years of experience working with people living with dementia and collaborating with professionals working with this population in Vancouver, I was accustomed to related institutional texts and how other professionals typically engaged with them. As a result, when participants shared that they had requested several services from professionals but were declined, I immediately thought, “The professionals wouldn’t provide these services, as that’s not 71 how things typically operate.” Through practicing reflexivity and being reminded by my advisor with lived experience, I recognized that I viewed participants’ experiences from a professional’s standpoint. I had become entrenched in the ruling relations and failed to understand the participants’ experiences fully. Acknowledging this allowed me to shift my perspective and engage more deeply with participants’ realities, critically examining the problematics that might have otherwise gone unnoticed. My social location as a Chinese individual also hindered my ability to recognize certain subtle but important findings. For instance, during data analysis, when I came across the detail that a participant and her husband had reached out to their families in Hong Kong for support, I first overlooked its significance. As a Chinese immigrant, I was deeply familiar with the practice of Chinese immigrants to reach out to transnational kin networks for support, particularly in times of need. This practice was so common within my own cultural community that I did not initially consider it noteworthy. It was not until I discussed this data with my supervisor, who comes from a different cultural background, that I realized its importance. My supervisor’s outsider perspective prompted me to reconsider what I had taken for granted. The action of this participant and her husband reaching out to their families abroad indeed highlighted a gap in the Canadian service system’s ability to meet the participant’s needs. This realization helped me recognize how seemingly everyday actions could reveal broader systemic failures. Notwithstanding, my social locations as a Chinese and a social worker provided certain advantages during the interview process. As a Chinese, being able to communicate in the same language as the participants allowed me to build rapport and gain their trust quickly. Language 72 became more than just a tool for communication—it was a bridge that fostered familiarity, connection, and an understanding of cultural nuances, such as metaphors, that might have been lost had the interviews been conducted in English. Moreover, being a social worker, the communication skills I developed through my training and practice, such as active listening, validating participants' experiences, and creating a supportive environment, helped participants feel heard and respected, as some of them told me, encouraging them to be more open in sharing their stories. Nonetheless, my positionality as a social worker and as a person not living with dementia gave me power in my relationships with participants. One key privilege I have is that my voice is more likely to be heard and validated in society than the voices of those living with dementia. Recognizing this, I made a deliberate effort during interviews to refrain from interrupting the conversation and allow participants to guide the dialogue, ensuring that I did not unintentionally dominate the conversation. I also used a conversational style and loosely structured interview guide to facilitate their sharing of experiences. 2.7 Chapter Conclusion This chapter detailed the study's methodology. The primary methodology is institutional ethnography (IE), which aims to uncover how personal experiences, particularly for marginalized groups, are shaped by broader institutional practices and embedded systemic oppression. 73 IE principles underpinned the research design. The study began with interviewing Chinese individuals living with dementia to obtain their standpoint and establish the problematics. This was followed by searching for and analyzing relevant texts to identify the ruling relations. Interview analysis involved methods such as Gilligan’s Listening Guide, metaphor analysis, drawing on narrative inquiry principles to craft a participant’s story, and thematic analysis. Textual analysis focused on texts related to services and notions mentioned by participants, moving across different institutional levels. Strategies from Critical Discourse Analysis (CDA) and thematic analysis were used to analyze texts. A key step was linking the interview and textual analysis to identify the disjuncture between people's experiences and the institutional texts in which ruling relations operate. The chapter also highlighted the collaboration with an advisor with lived experiences, who provided critical insights into the analysis. Measures to enhance research integrity were implemented, grounded in the critical lens and IE, emphasizing power-sharing and amplifying marginalized voices. Ethical considerations discussed included adhering to the principle of presumed capability, using process consent, and following principles for involving people living with dementia in research. Finally, as the researcher, I reflected on my positionality as both an insider and an outsider and the practice of ongoing reflexivity throughout the study. The following chapter will present the story of a participant, June. 74 Chapter Three: Story of June: Navigating Dementia amid Service Gaps In Chapter Two, I provided a brief description of each participant. Here, I flesh out the story of one of the participants, June, to illustrate key problematics. I selected June’s story because it includes problematics that resonate with those experienced by other participants that are central to this study. A story approach allows for a more detailed provision of one’s background, which helps contextualize and illuminate these problematics. Additionally, I will begin to tease out how June’s intersecting social locations shaped her experiences, making her more affected by certain problematics. This analysis highlights the complexity and variability within the data. June’s story serves as a foundation for understanding the problematics as well as the ruling relations that textually mediate them and the embedded oppression, which I will elaborate on in Chapter Four. June is 77 years old. She was born in mainland China and later moved to Hong Kong. From there, she immigrated to Canada about 30 years ago. She lives with her husband in a house they own in a neighbourhood in a large city with a high Chinese population. Her husband is identified as her primary support person, meaning, in this case, he assumes responsibility for household chores, driving, and accompanying June to medical appointments. She and her husband are both “retired for a long time.” They have two daughters from whom they are reluctant to seek support because they see them as very busy with work and their families, so they do not want to be a burden. June first saw the recruitment poster for my study in the messaging group chat of a service organization she attends for a singing group—something I will mention later. The organization often shares updates about its activities through this chat. She responded to the poster by giving 75 me a call. During this phone call, she shared her experiences, from getting a diagnosis to using different services. She agreed to meeting in person, so we met at her home, and she shared her experience using the services further. June indicated that she began to feel “something was not right” during COVID-19. She noticed she could not remember things that had just happened. For example, she would quickly forget the content of a conversation she had just finished. Also, when she lay on the bed and closed her eyes, she felt like she had travelled back to the past, when she was a teenager. She felt at these times that she was time-travelling, but was later told by the geriatric psychiatrist that the more appropriate term was that this was a “delusion”. She also began to have problems sleeping, often awakening several times a night and being unable to get back to sleep. She was therefore tired and less alert. All these alerted her to her cognitive changes. June raised her concerns about cognitive changes, especially becoming more forgetful, to her family physician several times during routine medical appointments. Each time, she felt dismissed because she perceived that the physician brushed her off and only ordered routine tasks like blood tests. She interpreted this as proof that her worries "weren’t being taken seriously." She said: I feel like family physicians nowadays don’t care much about their patients. A lot of people say seeing a doctor doesn’t help. They just tell you to do blood tests. There’s not much they can do for you. 76 June thought the physician disregarded her concern because of her age, as the physician told her, “You are pretty old. It is normal to have poor memory.” However, she disagreed with her physician: She felt the cognitive changes she was experiencing were too rapid to be just normal aging. When I get older, my cognitive condition will worsen. But for this [cognitive decline], I feel I have experienced a great step in dropping. I fell from this high [raising her hand] to here [moving down her hand quickly]. I can feel that. Apart from age, one wonders whether gender may have played a role in how June was treated. Some literature suggests that medical professionals often assume female patients are more nervous about their health than male patients, which may impact how they treat the concerns of female patients (Markowitz, 2022; Paganini et al., 2023). Even though the problematic which people feel their concerns are disregarded by medical professionals could affect all people living with dementia, women might be more affected when dementia intersects with gender. Despite the family physician initially dismissing her concerns, June did not give up raising them. Eventually, the physician did a cognitive screening with her. June said, “I followed up [about the cognitive concern] … The physician said, ‘Perhaps I will do a test for you.’” After the test, the physician acknowledged that June did have cognitive problems and referred her to the geriatric psychiatric assessment centre at the hospital, where her diagnosis of dementia was confirmed following a more thorough assessment that included a brain scan. 77 The geriatric psychiatrist at the hospital thought June’s cognitive changes would need to be monitored, so he referred her to the community mental health team. Another geriatric psychiatrist from the community mental health team visited her home monthly. Since the psychiatrist only spoke English and June’s English was limited, the psychiatrist arranged for an interpreter to come with her for her visits. However, due to the lack of consistency in the interpreter and the methods they used, this was less than effective. Notes June: “The first time, an older man interpreted the rough meaning. The second time, a younger man, who looked like a student, interpreted the meaning sentence by sentence, which was clearer and thus better than the first.” June continued to explain that quality interpretation was essential: There are many things I don’t know how to express in English. I worry I can’t express myself. Or I don’t understand when the physician explains my condition. We need to understand each other. There must be a quality interpretation. Besides the services provided by the physicians, June watched Chinese television and found out about the Alzheimer’s Society Chinese hotline. She wanted to learn more about their services, so she called the hotline. She spoke to a Chinese-speaking social worker and recalled their phone conversation: She [referencing the social worker] asked me if I would like to be with other people to have activities [referencing the self-support group for people living with early-stage dementia]. I said I wanted to. However, those activities were all in English. I said that if they were in English, I would not be able to understand. I said I would not go. Although June understood basic English, she felt that she would not be able to understand and catch up with what the English-speaking participants of the self-support group said, as she had 78 not only language but also cognitive challenges. June continued to be open to attending a support group, but ultimately, was never able to find one in Chinese. This is despite the fact that she lives in a neighbourhood and city with a known high Chinese population. In addition to seeking support specifically related to her cognitive changes and diagnosis, June wanted to join activities in the community to keep her engaged. June socially isolated herself when she started to experience cognitive decline. She felt it was hard for her to interact with others due to her cognition. She gradually felt depressed. However, later, she thought she could not continue socially isolating herself. She mentioned, “I think I will only get worse if I keep isolating myself. If I go out, listen to what people say more, and see more things, I may see something making me happier.” Nonetheless, despite exhausting her personal and church networks, she described a lack of opportunities that fit with her cognitive levels in the community. She said: If there is something suitable and I am interested, I want to [participate] … Well, for those which are easy … I am in contradiction. For those which is difficult, I can’t follow them, because of my poor memory. How can I follow? Finding appropriate-level programming was even harder for June because of her language needs and the requirement in many programs to speak English. For example, the Alzheimer’s Society social worker recommended that June join the adult daycare program, but June declined, as, according to the social worker's description of the program, she felt it seemed to cater to people with more moderate to later-stage dementia. She 79 also learned about the Bible study group from her church. After joining the first few sessions, she hesitated to continue because it was too cognitively demanding for her and seemed to cater to people without dementia. That said, she continued to attend the Bible study group because, otherwise, she felt, she would not have the opportunity to “do something.” She seemed to feel pressure to keep herself active. It raises the question of whether gender influences this. Literature suggests that older women face more pressure to actively age than men, which may stem from societal perceptions of gendered social identities (Ong et al., 2024). Men’s identities are often closely tied to their roles in paid work, whereas women’s identities are more commonly associated with family and caregiving responsibilities. As a result, after retiring from the workforce, men experience less pressure to stay active since they have already exited their primary social role. In contrast, women continue to face expectations of activity and engagement as long as they remain connected to family life (Ong et al., 2024). June did not give up and continued to look for suitable activities. She later joined an online singing group for older adults. She said it was not too difficult to follow others' singing, and meeting other older adults and singing with them made her happy. Interestingly, although June preferred in-person activities, as they better met her needs to be connected to others, her participation in both the Bible study and singing groups was via Zoom, which she learned to use during COVID-19. She explained this was because she wanted to reduce her husband’s worry about her falling when going out: 80 I always think of learning something or doing something. If it is Zoom, I can stay home; that would be the best. If I need to participate in person, I must transit … My husband worries about me travelling alone. Because I fell before, he worried I would fall again. He said, “You are already so old. If you fall, you will die.” She did not want her husband to drive her to the activities either, as she was clear that reducing the burden on her husband was important to her. Had there been reliable special transportation for older adults with fall risks and/or cognitive challenges like hers, this would not have been an issue, but there was inadequate service in her area. Additionally, she did not seem to have too many other family members she could rely on apart from her husband. She said her daughters were busy with their families and jobs. Also, as an immigrant, she had no other family members who lived locally. June’s story highlights several problematics, such as the feeling that medical professionals disregard one's cognitive concerns or lived experience of dementia, the lack of suitable services that align with an individual’s cognitive level or language needs, and the tension between not wanting to burden family members while lacking viable alternatives. In the following chapter, I will extend this analysis, exploring how these and other problematics are shared by other participants and examining how they are textually mediated. 81 Chapter Four: Broader Findings: Examining the Link Between Personal Experience and Textual Policies and Practices In the last chapter, I presented the story of one of the participants, June, to begin illuminate and contextualize the problematics. Following this, in this chapter, I will further respond to the main research question: “How are the experiences of Chinese people with dementia using formal support services textually mediated and shaped through ruling relations?” and the sub-questions: “What are the experiences of Chinese people using support services? How are their experiences shaped by textual policies and practices? How are oppressions, including racism, textually embedded?” I will extend the analysis to begin to address how the problematics, initially made visible through June’s story, applied more broadly and to articulate the ruling relations that mediate them via texts and the embedded oppression. These findings are then discussed in detail under four main themes: the dominance of the biomedical lens, the impact of neoliberalism, the government’s expectation of families to provide care, and the inattention to the intersection of race with age and dementia. Throughout this chapter, I will draw on critical theories on race and intersectionality to deepen the analysis. 4.1 Chapter Overview As I listened closely to the participants’ stories, the importance and dominance of the Western biomedical discourse for organizing their experiences became increasingly visible. The biomedical lens textually regulates medical professional practices, leading to a predominant focus on physical health—a view that, in some ways, counters the focus on holistic health espoused by several participants. The ruling relation of professional knowledge as evidence 82 mediates the tendency for medical professionals to prioritize their own expertise, which shapes participants’ feelings that their lived experiences are disregarded or discounted. These illustrate the dominance of the biomedical lens and the authority of medical professionals. The biomedical lens is intertwined with neoliberalism. In particular, the neoliberal ruling relations of maintaining independence as personal responsibility and dependence as a burden are sustained by the biomedical lens. The consequences of these neoliberal ruling relations are austerity policies in service provision. Austerity-driven approaches textually organize professionals to enforce restrictive eligibility criteria, reactive responses, and narrow and fragmented interpretations of service responsibilities, which are often justified by referring to a biomedical lens, which shapes participants’ struggle to use support. One process in austere systems is to shift care responsibilities from the state to families. The expectation of families to provide care in texts informs professional assumptions about who should be supporting the individual, and this may result in participants being unable to use formal support services and needing to rely upon family members despite personal preferences for services and fear of being a burden to family. While some of these findings would apply to all older adults with dementia, using services is even more difficult for Chinese individuals as a racialized group. The invisibility of race, or inattention to the intersection of race with age and dementia, in texts, reflects the colourblind nature of the biomedical perspective. One example of this is the hidden requirement for English, causing participants to struggle to find language-appropriate support, a challenge compounded by the high overlapping between immigrants/language minorities and racialized people in a 83 Canadian context. Racism is embedded in the system, disadvantaging racialized individuals in accessing care. The diagram format of the above chapter overview can be found in Figure 1. Figure 1: Summary of Findings 84 For the remainder of this chapter, I will develop these thoughts, including how they emerged through participants’ narratives and texts. 4.2 “I Told Him I Had an Absent Mind, He Asked Me to Focus on My Diabetes First”: The Dominance of the Biomedical Lens In this section, I will explore how the dominance of biomedical discourse textually shapes the experiences of Chinese people living with dementia using services. Participants’ narratives reveal that medical professionals prioritize the physical aspects of health and pharmacological treatment, while they prefer a holistic approach. This reflects how the biomedical lens marginalizes holistic health perspectives in dementia and aging service texts, shaping medical professionals' practices to emphasize physical health and medication. Also, medical professionals' knowledge regulates the use of services, as participants felt their understanding of dementia was dismissed. Professional knowledge is positioned as the primary evidence within “evidence-based practice” in dementia as well as in aging policy and service documents. This ruling relation frames medical professionals to rely on their own expertise rather than valuing participants' knowledge. Additionally, from an intersectional perspective, certain groups, such as racial, cultural, and linguistic minorities, including Chinese and women, may be disproportionately impacted by this ruling relation. 4.2.1 Visions of Holistic Health Approach Meet Services Grounded in a Biomedical Lens 85 4.2.1.1 Problematic: Focus on Physical Health and Pharmacological Treatment and Preferences for Holistic Health. Although participants did not use the wording of a “biomedical lens” or a “holistic health approach”, their description of their lived experiences on service use shows they were referring to these lenses and the tension between these lenses: Nine participants said explicitly that they felt the medical professionals focused too heavily on the physical aspect of health and pharmacological treatment, which is more in line with a biomedical lens, even though they raised the need to consider other aspects of health and interventions, which is more consistent with a holistic health approach. The others did not allude to holistic health or speak to it explicitly; nonetheless, they did not say they prefer focusing on the physical aspect of health and medication. Several participants described the ease with which they could gain attention for physical issues compared to the difficulties they had getting their cognitive concerns heard. They interpreted the physician’s focus on physical health as not taking their cognitive concerns seriously. For example, Grace described the challenging process of getting her family physician to look beyond her diabetes to consider her concerns about her cognition: I told him about my [cognitive] condition. He said that my blood sugar had risen and that he needed to increase my medication. I told him I had an absent mind. He asked me to focus on my diabetes first. He won’t take it seriously. While the physician might simply have been doing his job in ruling out other physical causes, it is of note that Grace interpreted his actions as refusing to take her seriously. 86 Rose described a similar perception that she was not being taken seriously when she approached her family physician for assistance with her emerging memory issues. Well, I am sorry to say that physicians often do not believe what patients say. Especially for mental illnesses [referencing dementia] instead of physical illnesses. Physical illnesses are more apparent. Physicians do not want to touch this area [referencing dementia] at all. They want to take easy cases and ignore difficult cases. Some participants felt that the medical professionals focused on pharmacological treatment. Relying mainly on medication shows that the biomedical lens is the preferred approach to health. However, the participants questioned this focus and expressed a need for non-pharmacological treatments. For example, Sam’s neurologist asked him to take medication to maintain his cognition or delay his cognitive decline related to his Alzheimer’s. However, Sam had reservations about taking it, as it made him feel nauseous. Also, he believed all medication has side effects, as he learned from a Chinese idiom: “To me, ‘whatever medication you take, 30% of it is poison’.12 Why is a medication called a drug? [Because] Drug means poison.” He preferred non-pharmacological treatments, which he actively searched for in the community. When asked what he thought would help delay the deterioration process, he initially responded in a hesitant, questioning way, “Taking medication may help?”. This statement was followed in a much stronger voice with the assertion: “Do brain exercise. And do physical exercise! I think physical exercise is the best because it is natural and should help cognitive deterioration.” 12 This is a Chinese idiom which means all medication has side effects. 87 Like Sam, Susan had reservations about medication, preferring instead to maintain her cognition or delay the deterioration through a healthy diet: I think medication is not 100% good for you. There are pros and cons [of taking medication]. Regardless, there must be some side effects. So, I do not take medication. Instead, I pay attention to nutrition. I eat more vegetables, less meat, less fatty food, less processed food, and less Chinese-style salty sausages and meat. I seldom buy and eat these kinds of food. I eat more fish. I pay attention to nutrition. In contrast to physicians' emphasis on the physical aspect of health, participants talked about other aspects (mental, social, or spiritual) of health that they felt were related to their dementia. Participants expressed the desire to be seen more holistically. For example, Simon made the link between poor mental health and dementia based on his experiences with his mother, who passed away with dementia: My eldest brother passed away. He passed away many years ago. He passed away because of an accident. I need to tell you about the loss of my brother [when I am telling you about my dementia] because my mother’s dementia was related to the loss of my brother. My brother passed away at around 55 years old, which was a young age. I was around 30 years old at that time. Well, I knew little [about dementia] at that time. The loss [of my brother] had a huge impact on my mother. Because he passed away, around ten years later, she began to have obvious symptoms of dementia. At that time, I suddenly realized that it was related to the loss of my brother. When Simon himself began having difficulties with his memory, based on his understanding of his mother’s experience, he believed it was related to his mental health issues of depression, so 88 he participated in activities that he believed could enhance his mental wellness, such as joining mental wellness self-support groups, volunteering, and doing exercises. As mentioned in June’s story, she talked about the social aspects of health – connecting with people and forming relationships. She was not the only person. Sam, who had early-stage Alzheimer’s, believed that social connection would help maintain his cognition or delay its decline. Therefore, since his diagnosis of Alzheimer’s, he proactively looked for programs in the community to connect with other people. From a Chinese social service institution, he learned that Alzheimer’s Society BC had the Coffee and Chat program, a social group for people living with early-stage dementia.13 Sam stated, “My objective in joining [the social group] is to have regular social activity, approaching and interacting with others.” Sam added that it was not easy for him to interact with people without dementia. For example, he could hardly remember their names. However, he did not have these challenges in the group, as other participants had similar problems and could understand each other. Some participants discussed the spiritual aspect of health. Paul, a Christian, talked about how religion calmed him: When I am sick or feel unwell, I hear the birds singing, I know I will be fine because I learned from the Bible that “The Lord takes care of the young sparrows. He takes care of us, too.” It’s strange. Like Paul, when asked about how she felt about the uncertainties of the future due to the unpredictable development of dementia, Susan, also a Christian, said she was not too worried: 13 This program used to only be available in English, but since 2024, there have been two pilot programs for the Chinese community (Alzheimer’s Society of BC, 2024a). 89 “As Christians, we believe the Lord will prepare us for our future. Right? The Lord has his plans for our future paths. We humbly pray in front of him.” 4.2.1.2 The Biomedical Discourse in Texts. Participants’ accounts can be contextualized by considering three primary action plans that guide aging and dementia services. These texts provide the principles of services that inform other texts, such as the BC Practice Guidelines for Primary Care Physicians on Dementia and Cognitive Impairment, which guide medical professionals' practices and will be mentioned later in this section. Although these texts about principles of services state a holistic health approach, they do not mention or specify the social and spiritual aspects of health, in contrast to what participants considered important. This suggests the implicit assumption that these aspects are not a critical part of health, subtly prioritizing the physical aspect of health. Here reflects that the dominance of the biomedical lens is embedded in texts. For example, the BC Senior Home and Community Care Action Plan mentions that care services to older adults “require more than a medical lens” (BC Ministry of Health, 2017b, p. 2), but this is never mentioned again in the 14-page document. The document does recognize mental and social aspects of holistic health by acknowledging that older adults “want to be able to take part in meaningful activities, maintain social and family connections, and enjoy the here and now and the everyday pleasures of living” and suggesting “there are many existing community supports [emphasis added] that can and should be engaged to support the care of seniors from a holistic perspective along with health-care services” (BC Ministry of Health, 2017b, p. 2). However, the document does not specify “community supports,” although it provides specific examples of 90 home health services, which tend to have a physical focus, such as assistance with daily activities. Spiritual health is not mentioned at all. Another guiding text, the BC Dementia Action Plan, states that services to people living with dementia should take “a person-centred approach … that incorporates biological, psychological, sociological and functional perspectives” and “recognizes that these perspectives all interact to determine an individual’s experience of the condition” (BC Ministry of Health, 2012, p. 2). However, although it mentions the “sociological” perspective of health, the term “sociological” is not defined in any meaningful way.14 There is no further elaboration on what this means in the document. The quote does not talk about the spiritual perspective of health either. The only other part in which this document shows its consideration of different perspectives on health is in one of its service priorities: “[to] increase access to early support and information [for people living with early-stage dementia] to manage the physical, behavioural and psychological symptoms of dementia” (BC Ministry of Health, 2012, p. 18). Still, the health approach behind it is narrow, one which does not draw in social or spiritual aspects of health. The third text examined is the BC Dementia Care Guide: This is the updated version of the BC Dementia Action Plan discussed above (BC Ministry of Health, 2016). Unlike the Action Plan, this document does give some value to the social and spiritual aspects of health and non-pharmacological treatments. For example, it mentions training for health care professionals in a “person-centred [dementia] care” program, P.I.E.C.E.S., which stands for caring for the “Physical, Intellectual, Emotional health, Capabilities, Environment, and Social [emphasis 14 As this thesis defined it earlier, social perspective of health refers to connecting with people and forming relationships. 91 added] self” of people living with dementia (BC Ministry of Health, 2016, p. 20). However, it applies primarily to residential, palliative, and end-of-life care, so it was less relevant to my study participants who lived in the community. Likewise, while the document says, “palliative and end-of-life care for people with dementia should address their physical, emotional, social, [emphasis added] psychological and spiritual [emphasis added] needs,” it does not mention addressing these needs outside palliative and end-of-life care situations (BC Ministry of Health, 2016, p. 13). Similarly, the document recognizes the importance of the “use of non-pharmacological interventions and the appropriate use of antipsychotic drugs” (BC Ministry of Health, 2016, p. 20), but again, the use of the interventions is limited to “residential care settings.” These suggest a segmented approach to care. The holistic health approach is positioned as relevant only when people living with dementia are near the end of life or live in residential care, rather than as an integral part of dementia care across all life stages and care settings. The role of an early, holistic health approach in maintaining and improving the quality of life for people with dementia living at home is also neglected. The segmentation shapes what life stages and care settings are valued and who can use holistic health care. 4.2.1.3 How the Biomedical Discourse Textually Organizes Practice and Shapes Experiences. A text that guides medical professional practice is the BC Practice Guidelines for Primary Care Physicians on Dementia and Cognitive Impairment (Doctors of BC & Ministry of Health, 2023). It is relevant as a mediating text because participants mentioned that they visited their family physicians when they felt something was not right with their cognition. It helps explain participants’ accounts since it provides the primary guidelines taken up by primary care 92 physicians in dementia care in BC. The guidelines, like the texts about principles of services, are grounded in a biomedical discourse. This includes an emphasis on ruling out physical causes and reliance on physicians. Perhaps this is not surprising since it is geared toward physicians, and I was unable to find any similar documents guiding broader professional practice per se. The guidelines do mention a holistic health approach but provide limited direction to primary care physicians on how they can put this into practice without the support of an interdisciplinary team, reaffirming the dominance of a biomedical lens. As a first step, the guidelines to physicians around ruling out other causes are physically related, such as “hyponatremia, thyroid disorders, hypercalcemia, and cobalamin deficiency” and “co-morbid diseases.”15 (Doctors of BC & Ministry of Health, 2023, Section Steps to Arriving at a Diagnosis) The written emphasis on ruling out physical causes undoubtedly guides the physicians’ practice and it may help explain the participants' perception that their physician was only interested in their dementia as a potential physical ailment rather than recognizing a broader impact: The physicians might not have explained to the participants the need to rule out or treat physical causes before diagnosis. Alternatively, the physicians might have explained, but not in a way that the participants could receive the message.16 The guidelines seem to propose the importance of a holistic health approach when they suggest that physicians “first consider non-pharmacological management of the behavioural and psychological symptoms of dementia” and that the physician “supports the development of a 15 Although the quote does not explain what the “co-morbid diseases” are, they may refer to other physical diseases, such as diabetes, mentioned by some participants. 16 The perception that physicians focused too much on the physical aspect of health is one of the reasons that participants felt their cognitive concerns were not taken seriously. Later, I will show the other reasons. 93 care plan that includes the identification of [non-pharmacological] community resources for patients and caregivers” (Doctors of BC & Ministry of Health, 2023, Section Key Recommendations). However, the concern is that understanding community services is not within the physician’s primary realm of expertise, so it is unsurprising that none of the participants identified physicians as key to organizing this support. Rather, most were left on their own to find appropriate support. The guidelines provide a half-page “resource guide” for the physicians’ references, which includes the names of possible community resources and contact details, but there is no evidence that physicians felt comfortable relying upon this limited information. Although the purported objective of the guidelines is “developing a care plan that includes the identification of community resources,” it does not suggest a structure for how to make the suggestion doable. It is unclear if this can be put into practice relying only on the primary care physicians and not having an interdisciplinary team, including a professional like a social worker, in the primary care clinic. Perhaps it is as expected, then, that the participants’ perception was that physicians focused most heavily on the physical aspect of health. In the guidelines, an interdisciplinary team approach is only mentioned once in the section on “mental health and specialty services” for people who have both dementia and mental health issues, stating services for this population should “involve allied health professionals (e.g., Home & Community Care case managers, mental health teams, pharmacists, occupational therapists, physiotherapists, dietitians)” (Doctors of BC & Ministry of Health, 2023, Section Mental Health and Speciality Services). This approach is not mentioned in the guidelines for primary care, giving the assumption that primary care physicians are trained more broadly than they are. This shows a reliance on physicians in primary dementia care rather than including other 94 professionals for a broader, more holistic health approach. Such reliance might organize physicians’ practice to focus on their expertise, that is, the physical aspect of health, which was also felt by participants. This explains how a biomedical lens gets maintained even within the rhetoric of more holistic health. One might expect that implementing a holistic health approach would also recognize the importance of including patients' voices. However, aside from references to “allied health professionals,” references to the patient’s perspective are curiously absent. Perhaps this helps contextualize why, as shown in the following subsection, some participants felt that their knowledge was not validated by the medical professionals. 4.2.2 Tensions Between Lived Experience and Professional Knowledge In this subsection, I will continue to illuminate the power of biomedical discourse embedded in textually mediated ruling relations. Participants demonstrated the value of their lived experiences of dementia, but they felt that their lived experiences were not validated by medical professionals. The message of professional knowledge as evidence, while lived experiences as not, in texts in the context of evidence-based practice, gives power to the knowledge of biomedical professionals. As a form of ruling relation, this message might textually coordinate medical professionals’ reliance on their knowledge as gatekeepers of services and, in turn, shape participants' feelings that their lived experiences were not validated. 4.2.2.1 Problematic: Participants’ Perceptions that Their Lived Experiences are Devalued and Not Recognized by Medical Professionals. 95 In June’s story, she drew on her bodily knowledge of dementia to ground her cognitive concerns. However, she felt that this knowledge was not validated by her family physician. She compared what was happening to her cognitively to her normal aging expectations and knew there was something different. She was not the only participant to make this comparison. For example, Ling said, “Poorer memory happens to everyone when they are getting older. But I think that apart from getting old, is something else happening?” Some participants had built their knowledge about dementia from their personal experiences. For example, Chelsea drew on her experiences as a caregiver of her mother with dementia before she passed away. At the early stage, we [referencing herself and her brother] did not have the knowledge or common sense. We did not know mother had it. We said to her, "How come you are so clumsy? We already told you." But gradually, we learned that she had dementia. But at that time, she was already at a later stage. Now, as Chelsea began to experience cognitive changes herself, this history with her mother helped raise her awareness that these changes might be symptoms of dementia. Despite having lived experiences with dementia, learning from their body and personal experiences, about half (ten) of the participants felt that the medical professionals discounted their insights as inferior to professional knowledge. The others did not explicitly acknowledge this point, but neither did they indicate that medical professionals valued their lived experiences. For example, Rose felt cognitive changes in her body. She asked her family physician for a cognitive screening and a referral to a neurologist. However, the physician declined and thought 96 she was just too nervous. She said, “Possibly because of my facial expression or body language, I leave him with the impression that I am easily nervous. Well, I am not too nervous. I have been thinking thoroughly that something is not right with me.” She continued: The problem is that my family physician does not want to take responsibility. He doesn’t want to make the referral or make the diagnosis for me. He would do the referral only if a third person [emphasis added] said that I have dementia. Otherwise, he is unwilling to do the referral. I must find a third person to say that I have the problem. I will then go back to him and ask for a referral. From her further explanation, “a third person” means a professional other than her family physician. She felt that the physician trusted another professional's knowledge but not hers. She later shared that she learned from her experiences helping her daughter get a brain scan that getting a recommendation for services from another professional would help. She and her daughter had the same family physician. Her daughter was having severe headaches periodically. Rose asked the physician to make a referral for a brain scan for her daughter, but he declined. One time, her daughter had a severe headache, and they went to the emergency department. The emergency physician recommended a brain scan after discharge. Rose asked her family physician for a brain scan for her daughter again, and this time, she was successful. Like Rose, when Grace could feel something was not right with her cognition, she went to her family physician. She had had another family physician before, who was now retired. Her new family physician immediately declined to take further action to address her concern. She said, “When I told him [about my cognitive condition], he said, ‘You are fine. Your physician before did not prescribe any medication to you. That means that you are fine.’” In other words, this 97 physician considered the medical records passed by another physician more reliable than what Grace told him at present. Simon thought he might have dementia because he felt memory changes in his body and had personal experience with his mother passing away with dementia. After some internal struggle, he gained sufficient courage to talk with his family physician, hoping the physician would refer him for further screening. Simon felt his concerns were dismissed by the physician, which silenced Simon from discussing it with him further. I recently talked to my family physician to check if I had dementia. The family physician told me, “How come you would like to see me for this [referencing dementia]?” My family physician meant, “Did you encounter any problems in your life?” What he meant was that he disagreed with me that I had dementia … If I forgot some appointments, he might pay attention [to my dementia]. He did not feel that I had the need [for cognitive screening]. Although his family physician did indicate that “I thought you were fine, but I will keep [what you said] in mind,” Simon felt dismissed and not taken seriously. 4.2.2.2 Professional Knowledge as Evidence, While People’s Lived Experience as Not in Texts. Many of the participants of this study mentioned that their lived experiences of the development of dementia were either ignored or disregarded by their physicians. The following primary documents, which provide the principles of dementia services, contextualize their accounts and begin to provide some foundation for understanding their standpoint. These documents reveal 98 how professional knowledge is privileged while people’s lived experiences are devalued under the emphasis of “evidence-based practice,” which hierarchizes different kinds of knowledge. The texts stress the importance of “evidence-based practice” for informing the provision of services. For example, the BC Dementia Action Plan mentions “evidence-based/informed” services five times in this brief 21-page text, such as this quote: “Develop and improve evidence-based [emphasis added] clinical guidelines, educational resources and interdisciplinary care teams to better meet the needs of people with dementia” (BC Ministry of Health, 2012, p. 6).17 The BC Dementia Care Guide (2016), as the updated version of the BC Action Plan (2012), follows the action plan’s emphasis on evidence-based care. In this short 26-page text, “evidence-based/informed” services appear seven times.18 The Canada Dementia Strategy Report also mentions using “evidence” to inform dementia services and resources (Government of Canada, 2021). 17 Other examples of quotes on “evidence-based/informed” in the document include: Hospital care is informed by evidence and linked to the primary and community health team (BC Ministry of Health, 2012, p. 13) Improve health care providers’ knowledge and capacity to deliver timely, safe, person-centred care to individuals and their caregivers through evidence-based information and interdisciplinary care team approaches across all care settings. (BC Ministry of Health, 2012, p. 18) Implement evidence-based interdisciplinary dementia education, information, tools and resources for family physicians, clinicians and care providers. (BC Ministry of Health, 2012, p. 18) Identify evidence-informed measures of quality dementia care and incorporate these in integrated health services planning and quality improvement initiatives, beginning with residential care services. (BC Ministry of Health, 2012, p. 19) 18 Some examples of quotes in the document are as follows: Identify evidence-informed measures of quality dementia care and incorporate these in integrated health services planning and quality improvement activities, beginning with residential care services (BC Ministry of Health, 2016, p. 17) Implement evidence-based interdisciplinary dementia education, information, tools and resources for family physicians, clinicians and care providers. (BC Ministry of Health, 2016, p. 18) 99 However, what counts as evidence? In texts, the concept of “evidence” aligns with the broader evidence-based practice literature, where it typically refers to knowledge derived from research, primarily in the biomedical field (Darzi & Athanasiou, 2011). Such “evidence” is a form of professional knowledge because it uses specialized language that requires training and education to produce and circulate. In this way, knowledge possessed by professionals is privileged, while other forms of knowledge, including people’s lived experiences, are marginalized. Interestingly, some texts mention that they include people’s lived experiences. Nonetheless, it is unclear if this is indeed the case, and they do not explain how this perspective has been incorporated. For example, in the BC Dementia Action Plan, immediately after a quote on “evidence-based practice,” the document outlines the government’s funding plan on how to develop “evidence” in the area of dementia, explicitly linking it to “research”: $15 million to the Pacific Alzheimer Research Foundation to support research on prevention or arrest [emphasis added] of Alzheimer's disease and related dementias. $34 million in drug coverage to the Alzheimer’s Drug Therapy Initiative (Oct 2007 to July 2012) to gather and examine clinical evidence on the safety and effectiveness of cholinesterase inhibitors, a group of medications for people with mild to moderate Alzheimer’s disease. $25 million to the Brain Research Centre at UBC Hospital to support the development of the Djavad Mowafaghian Centre for Brain Health. This is a new facility that will bring together, for the first time, all the multidisciplinary areas of brain health under one roof to support the development of new treatments [emphasis added] for illnesses and injuries of the brain. (BC Ministry of Health, 2012, p. 6) 100 I looked up the websites of the research institutes mentioned in the quote above. The research projects they are conducting are primarily quantitative, led by research scientists or clinicians who are biomedical professionals. Research data is professional knowledge that uses specialized biomedical language, and this is even more true for quantitative research. Regarding if any place of the document talks about involving the knowledge of people living with dementia, the beginning mentions that the document “has been developed with input and expertise from a variety of clinical, research and policy experts,” who are professionals from the biomedical and other professional fields, with a list of who they are (BC Ministry of Health, 2012, p. 1). I checked the backgrounds of these “experts,” and none of them self-identifies as a person living with dementia. In the middle of the text, the document mentions that it “is based on collaborative work undertaken between the ministry, clinical experts, physician leaders, community organizations, people with dementia and their caregivers” (BC Ministry of Health, 2012, p. 5). Nonetheless, it is unclear if people with dementia are truly involved because the names of people living with dementia are not mentioned, unlike naming the clinical, research and policy experts. This could represent an attempt to preserve the confidentiality and anonymity of those with dementia. This may be despite the fact that at least some people with dementia DO want to be recognized by their names, but are denied this option by professionals who want to protect them (Heggen & Guillemin, 2012). If people with dementia were involved, it is unclear how. The rest of the document does not mention the involvement of people with dementia. Interestingly, almost half (10 pages) of the document includes photos of older adults, which seem to send messages to readers that they are people living with dementia, and their voices are 101 included in the document, even though there is no statement in the document telling readers that they are people living with dementia. In the BC Dementia Care Guide (2016), as the updated version of the BC Action Plan (2012), the “evidence” refers to algorithm data: “The online algorithm [emphasis added] helps healthcare professionals and caregivers provide dementia care that best meets the needs of the person receiving care” (BC Ministry of Health, 2016, p. 20). Insight developed from algorithm data is a form of professional knowledge which uses specialized biomedical language. In addition, the quote indicates that the users of the evidence from the algorithm data are “healthcare professionals and caregivers.” In other words, people living with dementia are not included as users. Similar to the prior version, this newer document indicates its development includes the voices of people living with dementia. For example, it says, “The priorities and deliverables outlined in this guide are based on consultation with interest groups, including people living with dementia and caregivers” (BC Ministry of Health, 2016, p. 3). It also states, “During the development of this guide, we heard from people living with dementia, their families, and caregivers” (BC Ministry of Health, 2016, p. 7). However, again, it is unclear to what extent people living with dementia were involved: Certainly, there is no public recognition because their names are not listed, compared with the long list of advisory committee members at the end of the document (p. 24), who are researchers, clinicians, or leaders or directors of service institutes, in other words, professionals. Moreover, there is no information in this document describing how people living with dementia were involved and certainly no information describing strategies for adapting the 102 process to accommodate the diverse needs of people who are, by definition, experiencing some cognitive changes. The third text, the Canada Dementia Strategy Report, similarly seems to recognize the value of including the perspective of those with lived experience, stating explicitly that it considers the “experiences of those living with dementia” as part of the “evidence” (Government of Canada, 2021, p. 7). However, the document provides limited, if any, detail on collecting the “experiences of those living with dementia” and using them to inform services and policies. This contrasts sharply with the description of “surveillance information.” The report does not define “surveillance” or “surveillance information.” However, according to the Public Health Agency of Canada’s Glossary of Terms—which applies to its publications, including this report — “surveillance” means: systematic, ongoing collection, collation, and analysis of health-related information that is communicated in a timely manner to all who need to know which health problems require action in their community. Surveillance is a central feature of epidemiological practice, [emphasis added] where it is used to control disease. Information that is used for surveillance comes from many sources, including reported cases of communicable diseases, hospital admissions, laboratory reports, cancer registries, population surveys, reports of absence from school or work, and reported causes of death. (A public health system core function.) (Public Health Agency of Canada, 2010, Section S) Surveillance information is professional knowledge because its synthesis and development require the scrutiny of biomedical professionals. It has a biomedical focus, as “surveillance” is “a central feature of epidemiological practice” (Public Health Agency of Canada, 2010, Section S). 103 It shows the objectification of disease as an entity rather than an individual. Unlike “the experience of those living with dementia,” the Canada Dementia Strategy Report has a plan on how to collect surveillance information: The federal government has a convening and coordination role in surveillance of dementia. PHAC [Public Health Agency of Canada] conducts ongoing surveillance of dementia through the Canadian Chronic Disease Surveillance System (CCDSS). This system is a collaborative network of provincial and territorial surveillance systems. PHAC works with the provinces and territories to collect data on all residents who are eligible for provincial or territorial health insurance. It can generate national estimates and trends over time for more than 20 chronic diseases, including dementia prevalence, incidence and all-cause mortality. (Government of Canada, 2021, p. 65) The report also has details on how the surveillance information will inform dementia services and policies, such as to “provide a more accurate picture of the impact of dementia in Canada,” identify “groups within the general population that are more affected [by] and more at risk [of dementia], “support better identification of their health needs and those of caregivers, “ensure that activities taken to support the strategy are well-informed and appropriately targeted,” and “enable evaluation of progress resulting from activities undertaken in support of the strategy” (Government of Canada, 2021, p. 9). These detailed plans show the power of professional knowledge. There is no corresponding description of how lived experience data will be collected and/or utilized. 4.2.2.3 How Professional Knowledge as Evidence Textually Coordinates Practice and Shapes Experiences. 104 After showing how professional knowledge achieves status as “evidence” in a way that privileges the knowledge of biomedical professionals, I will now refer to two sets of texts that guide practice to demonstrate how professional knowledge as evidence, as a form of ruling relation, might textually regulate medical professionals’ practice and help construct participants’ standpoint. From most participants’ interviews, when they needed dementia services, the first professional to whom they went was their family physician; this highlights the dominance of the biomedical lens, as physicians were seen as the first-line primary gatekeepers of services, having the power to control access to services. Several participants, like Simon, talked about requesting family physicians for the cognitive screening service. The BC Practice Guidelines for Primary Care Physicians on Dementia and Cognitive Impairment states that physicians “do not screen asymptomatic populations for cognitive impairment” (Doctors of BC & Ministry of Health, 2023, Section Key Recommendations). This document includes a list of possible symptoms to alert the physician that something may be wrong and needs screening. The following are examples of cognitive impairment symptoms that may present during office visits and may require further assessment: Missed office appointments; Calls office frequently or inappropriately; Confused, forgetful or less compliant about medications; Defers to a family member in answering questions; Has suffered a stroke; Unexplained falls and fractures; Frequent emergency room visits; Experiences late-life depression, or delirium; Patient is unable to recall treatment instructions or recommendations from prior visits; or Presents signs of self-neglect (e.g., hygiene, grooming, unexplained weight loss). (Doctors of BC & Ministry of Health, 2023, Section Signs and Symptoms) 105 Missing from this list is any reference to the patient’s subjective experiences of memory loss or symptoms as a trigger for further screening. Put another way, if the patient feels something is not right but the physician disagrees, there is no directive to trust the patient’s perspective over the physician's more limited observations. Some participants, like Rose, talked about requesting their family physicians to refer them to a brain specialist. The BC Practice Guides for Family Physicians on Referrals explains how a referral takes place: A valid referral occurs, and a consultation applies, when a referring practitioner [emphasis added], “in the light of his/her professional knowledge [emphasis added] of the patient and because of the complexity, obscurity or seriousness of the case, requests the opinion of a medical practitioner competent to give advice in this field … The decision to make a referral or re-referral is that of the referring practitioner [emphasis added] … The decision to accept a referral or re-referral is that of the consultant [emphasis added]. (BC Family Doctors, 2022, p. 1) The guidelines make clear that the decision to make and accept a referral to a specialist is based on the “professional knowledge” of the “referring practitioner” (i.e., the family physician) and “consultant” (i.e., the specialist). There is no mention of how the patient’s perspective should be considered. The guidelines for primary care physicians on screening and referral services illustrate professional knowledge as evidence for services, while knowledge of people with lived experiences is not. This might organize the physicians’ decision-making in determining the 106 necessity of services, relying primarily on their own knowledge or other professionals. As a result, it shaped participants' experiences of feeling that their knowledge was not validated and the subsequent challenges they faced in accessing services; this was illustrated in the cases of Rose, Grace, and Simon. This shows the dominance of the medical professional's knowledge over the lived experiences of people with dementia. 4.2.2.4 The Lived Experiences of Cultural and Language Minorities and Women with Dementia Are Even Less Valued. The above illustrates how professional knowledge as evidence, while people’s lived experiences are not, shapes participants' feelings that their lived experiences are disregarded. While this ruling relation affects all people living with dementia, from an intersectional lens, some groups could be more affected. One group is racial, cultural, and language minorities, including Chinese, which is the group the participants identified with. The BC Practice Guidelines for Primary Care Physicians on Dementia and Cognitive Impairment, the main text guiding primary care physicians in BC on dementia care, which I referred to above, does have a section titled “Cognitive Impairment in Culturally and Linguistically Diverse Groups.” It does not mention the word “racially.” From the perspective of critical theories on race, this effectively hides or neutralizes the link between “culturally and linguistically diverse groups” and racialization and/or racism – even though culturally and linguistically diverse groups are often racialized in a Canadian context (Statistics Canada, 2023e). 107 This section begins by noting that these groups are “unfamiliar” with dementia symptoms, “view [its symptoms] as a part of the aging process,” and have a “stigma to mental health issues,” including dementia, “resulting in diagnosis delay” (Doctors of BC & Ministry of Health, 2023, Section Cognitive Impairment in Culturally and Linguistically Diverse Groups). There are a number of issues with this framing. First, arguably, some of these statements perpetuate stereotypes that are not supported in the document. Second, it positions these groups as particularly challenging to work with. Moreover, this framing implies that the challenges of using services experienced by these groups can be attributed to their own false beliefs and actions; in other words, it is their fault if existing services are not working or are difficult to access. Of note, in making these statements, the text does not indicate the reference group against whom “culturally and linguistically diverse groups” are to be compared. The hidden answer is … White people. The text seems to marginalize “culturally and linguistically diverse groups” as particularly problematic, even though research, for example, by Parveen et al. (2017), demonstrates that the problems are found across all racial, cultural, and language backgrounds. In addition, these problems were not the case for many of the participants in this study, who demonstrated considerable knowledge about dementia from their bodies and personal experiences, did not see dementia as a normal aging process, and actively sought a diagnosis. When these negative assumptions and biased stereotypes intersect with the ruling relation of professional knowledge as evidence, they might textually coordinate physicians' practice by reinforcing the prioritization of their own expertise. This, in turn, deepens experiences of being 108 invalidated or dismissed among Chinese people living with dementia, who feel that their lived experiences are disregarded, highlighting the intersection of racism and professional power. Another group that could be more affected is women. Rose said she felt her physician, who was a man, thought she was “too nervous” about her cognition and declined her requests for further services. This hints that there might be a gender bias against her from the physician, because previous research on healthcare has suggested that physicians have a bias toward seeing female patients as being more emotional than male patients and tending to exaggerate their health conditions (Hamberg, 2008; Markowitz, 2022; Paganini et al., 2023). Similarly, even though there is limited previous research on dementia care on how physicians see patients living with dementia of different genders, the study by Koehn (2012) about Chinese navigating diagnosis showed that male physicians tend to see female family caregivers of dementia patients over sensitive about the cognitive condition of their family members. In Rose’s case, gender bias might be impacting how Rose’s physician was hearing and responding to her, which became a barrier for her to access services. When I looked up the texts on dementia and aging services, I did not see negative assumptions and biased stereotypes against women. However, I also did not see any content addressing gender bias in the provision of services, either, but Rose’s case hinted that this is happening. The obstacle to accessing services may be intensified when this gender bias intersects with the ruling relation of professional knowledge as evidence, while people’s lived experiences as not. 4.2.3 Summary 109 In this section, I have tried to outline how the experiences of Chinese people living with dementia using services are textually mediated and shaped by the biomedical lens. The dominance of the lens in texts regulates medical professionals' practices, leading them to prioritize the physical aspects of health, a sentiment also expressed by participants. Also, the ruling relation of professional knowledge as evidence within the context of "evidence-based practice" textually guides medical professionals to rely primarily on their own expertise or that of other professionals when providing services rather than considering the perspectives of people living with dementia, thus contributing to participants’ feelings of having their knowledge dismissed. Lip services are given to the importance of the perspective of those with lived experiences, but there is no indication that this moves beyond superficial rhetoric in text documents, and it certainly was not the experience of the participants in this study. From an intersectional lens, it would appear that some groups, such as racial, cultural, and language minorities, including Chinese, and women, are more affected by this ruling relation. 4.3 “The Resources for These Services Are Limited. I Should Not Compete for These Resources with Others” – The Impact of Neoliberalism A biomedical lens appeared to be used to support broader patterns of austerity in the context of neoliberalism. As suggested in Chapter One, neoliberalism refers to a discourse which prioritizes economic efficiency (Davies, 2017; Harvey, 2005; Springer et al., 2016; Steger & Roy, 2021) and frames the welfare state as an economic burden (MacLeavy, 2016). Austerity, a consequence of neoliberalism, refers to a reduction in public spending (Ågotnes et al., 2024; Joy, 2021). Participants’ experiences show that the biomedical lens is embedded in the texts, which coordinated the practice of medical professionals that resulted in limiting participants’ access to 110 services. In this next section, I will explore how the experiences of Chinese people living with dementia using formal support are textually shaped by neoliberal ideas and reveal the neoliberalism embedded in these ruling relations. Specifically, I will highlight how, fueled by the biomedical lens discussed above, maintaining independence as personal responsibility and dependence on services as a burden justify austerity policies. These austerity policies textually shape participants’ experiences of exclusion from services. First, I will introduce the discourse of active aging and show how maintaining health and independence through active aging is positioned as a personal responsibility. I will demonstrate how this intertwines with dementia framed as incapability. These interacting messages shape participants’ experiences in contradictory ways: Those who do not want to actively age feel pressured to do so, while those who want to actively age find limited suitable opportunities if they have a diagnosis of dementia. I will then examine how these ideas inform practice and policy in ways that position dependence on services as a burden to society and attempt to curtail this by limiting state intervention through a ‘needs-based’ approach. This textually shapes participants' experiences of feeling undeserved or being told to be grateful for services. The consequences of the neoliberal ideas of maintaining independence as a personal responsibility and dependence as a burden represent austerity policies in services. I will present examples of austerity policies embedded in neoliberalism and fueled by the biomedical lens. These include: home rehabilitation, which takes a reactive approach; social and healthcare services, which follow a narrow and fragmented interpretation of service responsibilities; and 111 brain scan services, which have a restrictive eligibility criterion. These austerity policies textually shape participants' experiences, hindering their use of services. 4.3.1 Understanding the Active Aging Discourse Active aging is a discourse that promotes the idea that older adults can avoid and potentially reverse illnesses, disabilities, and dependence, reflecting the influence of a biomedical discourse, by adopting active and healthy lifestyles—such as eating well, exercising, and engaging in society through volunteering (Fernández-Ballesteros, 2008; Gingold, 1999; Klein & Bloom, 1997; Tesch-Romer, 2022). In literature and policy documents, it may also appear under related terms such as “successful aging” and “healthy aging” (BC Ministry of Health, 2017a; BC Ministry of Healthy Living and Sport, 2013; Liang & Luo, 2012), but these variations consistently position staying active at the centre. The discourse gained prominence in the late 1990s and continues to exert a dominant influence in Western society today (Liang & Luo, 2012). In the following, I will discuss how this discourse shapes participants’ experiences in two ways: first, by framing active aging as a personal responsibility, and second, by implying that only people without disabilities can actively age. 4.3.2 Acknowledging and Accepting Changes Within the Context of an “Active Aging” Discourse An analysis of participants’ stories revealed a tension between their personal expectations of themselves as someone experiencing cognitive loss and how these fit with the ideas and 112 assumptions underpinning an active aging discourse. For almost half of the participants (nine out of 19), the importance of acknowledging and accepting changes from dementia was explicitly identified; often this was referenced as the need to go with the “flow”. The remaining participants did not actively discuss this as an issue; nonetheless, they did not refer to resisting changes. For example, Sam and Susan saw acknowledgement and acceptance as allowing them to go with the flow of changes. Sam described how his Alzheimer’s interfered with his beloved chess game. Before his diagnosis, he had played competitively in numerous community competitions and was proud to have reached the expert level, a high status among chess players. However, this changed with his diagnosis: “When you have dementia, you have to change. Just like playing chess, I am not as good as before.” This meant that instead of playing in competitions, he began to play only with his friends at the community senior centre, which he enjoyed. Explicitly addressing the importance of adapting, he cited a quote by Laozi, an ancient Chinese Taoist philosopher, that "changes are constant” to support his acknowledgement and acceptance of changes. When he talked about going with the flow of these changes, he did so in a peaceful tone and pace that suggested this as an overall philosophy rather than forced adaptation. Susan similarly described the need to adapt to change as a priority for her. Although her cognitive changes remain undiagnosed, despite two MRIs, she recognized that she was experiencing some cognitive deterioration, especially with declines in memory and organization skills. When asked if she worried about changes in her cognition in the future, she responded: “I think there is nothing I can worry about. You can’t worry about everything. How much can I worry about the future? What I can do is go with the flow.” Other participants, such as Maria and 113 Ling, also expressed the need to go with the flow as a priority and responded to the changes from dementia by adapting their lifestyles and thoughts, like Sam and Susan. Interestingly, while this personal philosophy, which aimed at accepting change and “going with the flow,” seemed consistent with, for example, cultural values rooted in Taoism, participants’ stories suggested that this philosophy was challenged by broader societal messages focused on fostering active aging. This latter discourse sets up illnesses, including cognitive deterioration, as avoidable and potentially reversible (BC Ministry of Health, 2017a, 2017b). For instance, the quote below from the BC Active Aging Strategy suggests that “You can do many things [referencing active aging] to avoid illness, disability, and loss of independence as you grow older” (BC Ministry of Health, 2017a, Section What You Can Do). Examples of activities recognized in the text as “avoiding illness, disability, and loss of independence” include “healthy eating,” “physical activity,” and “volunteering,” (BC Ministry of Health, 2017a, Section What You Can Do). Supporting this idea, the BC Senior Home and Community Action Plan suggests: “Illness, disability and loss of independence are not inevitable consequences of aging. A focus on healthy living can prevent, minimize or even reverse frailty and poor physical and mental health in old age” (BC Ministry of Health, 2017b, p. 6). “Active aging” is articulated as the key for older adults to “live longer and healthier lives” (BC Ministry of Health, 2017a, Section Active Aging). These texts seem to suggest that the absence of physical and cognitive changes through one’s lifestyle choice is possible. Therefore, the impression that one is personally responsible for their health if one does not prevent their illness begins to surface. 114 4.3.2.1 Active Aging as A Personal Responsibility in Texts. A key component of the active aging discourse arguably places personal responsibility – and hence pressure – on participants to remain involved and active. In particular, as outlined in the BC Active Aging Strategy, the onus is on the older adult to be “involved in your community” through activities such as volunteering, participating in community activities, and meeting people (BC Ministry of Health, 2017a, Section Active Aging). This mandate fails to recognize the uniqueness of each person. Specifically, different participants had different preferences; for some, as shown in the previous sections, remaining involved in the community was a priority. However, others voiced that they did not want to be involved but felt pressured to do so. For example, Nora, who was in the early stage of dementia, used to volunteer extensively in the community centre, helping with event organizations and reaching out to socially isolated older adults. When she began to feel this was too much and she wanted to discontinue in this role due to her cognitive changes, she reported being told by the staff, “How come you are thinking of retiring? If you retire, you will become an idiot. Retirement will only make you worse than now.” Similarly, Ling, who had mild cognitive impairment, said that people in her community asked her to go to activities. She was clear that “I don’t want to go,” as she wanted to keep her circle of friends small, consistent with her lifelong preferences: “I am very individual. I do things individually.” Participants like Nora experienced pressure to age and respond to their diagnosis in a particular way, of remaining “active.” The key government documents on active aging in BC, the Active Aging Strategy and the Seniors Healthy Living Framework, articulate a discourse of active aging 115 that, ironically, is situated as both a personal choice and a responsibility. Combining personal choice and responsibility sounds contradictory, as choice means one has the option to do something or not, but responsibility means one must do something. The following texts from the BC Active Aging Strategy demonstrate how these two contradictory concepts are combined. It says, “Active aging also means being involved in your community and making healthy lifestyle choices [emphasis added]” (BC Ministry of Health, 2017a, Section Active Aging). It furthers this impression of choice, drawing on the language of “decision” to describe making judgements on aging: “The decisions we make every day affect how we age (BC Ministry of Health, 2017a, Section What You Can Do).” “Decision” is a strong and serious word, suggesting an action that carries significant impacts. When placed in the above sentence on aging, it implies that one has both legitimate options and the responsibility to make the right decision that will foster continued health and independence; in other words, per this document context, to remain active. This example shows how the government frames active aging as a choice explicitly (by using the word “choices”) but passes the message that it is a responsibility implicitly (by using the word “decisions”). Another example is from the BC Seniors Healthy Living Framework, which says, “Making healthy living choices improves the quality of life, and helps defer or avoid health care costs” (BC Ministry of Healthy Living and Sport, 2013, p. 16). Like the previous document, healthy living is described as a result of personal “choices,” with the failure to make appropriate choices impacting the cost of healthcare for everyone. In other words, if one does not make healthy decisions, one is responsible for increasing healthcare costs and financially burdening other members of society. This message is similarly repeated later in the same document, which states 116 that the aim of ”encouraging healthy lifestyles among seniors” was to “reduce or even reverse frailty and poor health in old age” to “reduce or defer health care costs” and “avoid or defer costly health interventions” (BC Ministry of Healthy Living and Sport, 2013, p. 16). Apart from the two key active aging texts, the message for older adults to take responsibility to age actively in order to maintain their health and independence can also be found in other aging service texts. For example, the BC Senior Home and Community Care Action Plan states that “the majority of seniors age well,” that is, they “remain active in their daily life, keep well and live independently” through “healthy aging” (BC Ministry of Health, 2017b, pp. 2–4). It also publishes a series of self-care strategies for older adults of all ages on how to “age well”: • Aging Well in Your 60s – Key Actions You Can Take to Maintain Your Health and Independence • Aging Well in Retirement – Self Care and Services • Aging Well in Your 70s - Key Actions and Plans You Can Take to Maintain Your Health and Independence (BC Ministry of Health, 2017b, p. 6) The three texts show the message of maintaining health and independence by active aging as a personal responsibility. It is neoliberal in nature, as it shifts the responsibilities of care from the government to individuals and rationalizes this by assuming the financial burden on society if individuals fail to do so. It also shows the influence of the biomedical lens, which sees aging as an illness and focuses on how to avoid or reverse illness through active aging. It operates as a form of ruling relation that might influence the practices of service providers, such as the staff in 117 Nora’s narrative, by prompting older adults to embrace active aging. As a result, this shaped the experiences of some older adults, like Nora, who feel pressured by these expectations. 4.3.2.2 Active Aging Within a Context of Limited Opportunities: Dementia as Incapability in Texts. While the stories of some participants, such as Nora, felt pressure from implicit messaging on the importance of remaining active, some participants’ narratives show their engagement with this discourse. However, despite the strong societal message regarding the importance of remaining active, at a personal level, they described decreasing opportunities to actually do this. As noted in June’s story, finding programs that fit her cognitive level was challenging. For some participants, this challenge was related not only to the impact of the cognitive deterioration associated with their dementia per se, but, importantly, also to the stigma against people with cognitive impairment. For example, two participants spoke eloquently about their desire to remain active as volunteers in their community, but their perception was that they were no longer welcome or trusted because of their dementia. Paul described how “useful” he had always felt as an active volunteer for his church. However, since his cognitive changes, he indicated that other volunteers prevented him from helping. He thought this was because they thought that he would bring them trouble or be a burden to them due to his cognitive decline. This had left him feeling “useless” and disconnected. Grace was even clearer that she saw her opportunities as limited due to discrimination related to her cognition. She kept looking for volunteering opportunities in the community as she wanted to contribute to society. At the time of the interview, she had not been successful in securing any. She said, “There are not many opportunities. People [referencing 118 community centre staff] think I am slow. They don’t like to have me. So, I just don’t go. I indeed enjoy volunteering a lot.” She felt excluded by what she saw as the staff’s pejorative assumptions. This reflects their lack of inclusivity and a reluctance to adapt to promote participation of those experiencing cognitive loss. The participants’ experiences begin to reveal how active aging services prioritize a group of people while marginalizing others. Specifically, upon closer scrutiny, it appears that the texts suggest that only healthy and independent people can engage in or contribute to society, while those who are ill and need support, including those living with dementia, cannot. For example, the BC Active Aging Strategy suggests: “Staying active as you age can help you be healthier, happier, and more independent … Older people who stay healthy, active and independent can continue to contribute their skills, knowledge, and experience to society” (BC Ministry of Health, 2017a, Section Why B.C. Supports Active Aging). The assumption here is that those who do not stay healthy – i.e., experience a neurocognitive disorder such as dementia – cannot continue to contribute. This shows the tension between the parameters of an active aging discourse with the stigmatizing discourse of dementia as incapability, which is reflective of ableism and discriminates against people with disabilities like dementia. Participants' stories suggest that this discriminatory understanding is not reflective of their reality: Older adults with dementia who need support from others can engage in and contribute to society. Paul and Grace’s eagerness to volunteer and June’s proactiveness in looking for community programs show that they felt they could still engage in and contribute to society. The stigmatizing discourse of dementia as incapability and ableism is linked to the biomedical lens, 119 which sees a person’s capability only in relation to their illness instead of a holistic context in which capability could be influenced by different factors. It also links back to the biomedical idea of not seeing people’s lived experiences as knowledge, because if dementia means incapability, it frees up the need to talk and listen to people living with dementia. It might textually organize the practices of service providers and volunteers who work with people living with dementia, such as conveying a message to them that they are too slow, as shown in Grace’s case, and perpetuate exclusion and ableist assumptions. This subsequently shaped participants’ experiences of feeling unwelcome. In discussing the rights and experiences of those with disability, the Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2006, Section Preamble) highlights that “attitudinal and environmental barriers hinder their full and effective participation in society on an equal basis with others.” In other words, whether people living with dementia can engage in or contribute to society depends on the attitudes of other people and the environment around them. In Paul and Grace’s cases, the staff and volunteers excluded them from volunteering due to their cognitive abilities, which shows the “attitudinal barriers” against people living with dementia. In June’s case, there were limited choices of programs that suited her cognitive abilities, which shows the environment was unfriendly to people with different cognitive abilities. The importance of maintaining health and independence through active aging as a personal responsibility intersects with an understanding of dementia as equating to incapability. The two messages mutually reinforce each other to contribute to the larger neoliberal and biomedical discourses in which they are a part, marginalizing older adults living with dementia. Both messages textually framed the doings of service providers and community members, shaping 120 participants' experiences: Some participants who chose more solitary and/or disengaged ways of aging felt pressured to be more “active,” while others who wanted to remain active could not find suitable opportunities. 4.3.3 Feeling Undeserving of Services in the Context of Dependence on Services as a Burden to Society In the following, I will introduce the message that dependence on services is a burden to society, so state intervention should be limited based on needs. It is the flip side of maintaining health and independence as a personal responsibility: One is assumed responsible for their health and independence. They are seen as a burden when they cannot assume this responsibility and turn to services for assistance and support. It also exaggerates the damage done by stereotypical assumptions that dementia means incapability: Older adults living with dementia who need support now are not only assumed to be incapable but also a burden to society. This underlying message influenced participants' experiences, making them feel that they did not deserve services or should be grateful, a key theme that emerged from their stories. 4.3.3.1 Problematic: Experiences of Feeling Undeserving or Being Told to Be Grateful for Services. Some participants described feeling that they did not deserve the services and/or being told that they should be grateful for whatever they got. For example, when Simon asked his family physician for a consultation on dementia and cognitive screening, the physician declined 121 immediately and said, “Let’s discuss this next time.” Simon brought this up again in the subsequent two visits, but the physician said the same thing, so Simon gave up. Simon responded with understanding: “The physician is very busy and has many other priorities he needs to handle.” Simon internalized that his concern was insignificant compared with the physician’s “other priorities” and that he should not waste the physician’s time on further investigation. Others similarly perceived the message that they needed to be careful and curtail their requests to avoid burdening an overstretched system. For example, while discussing her interest in using services through the Alzheimer’s Society, Susan dissuaded herself, noting, “The resources for these services are limited. I should not compete for these resources with others [whose condition was worse than mine]. It does not seem to be correct.” She did not explain why she made this statement. However, given her considerable experience navigating healthcare and social services due to additional physical and mental health issues, one wonders if this was a message she was used to receiving. Another participant, Becky, who suffers from Progressive Supranuclear Palsy (PSP) – a rare type of Parkinson’s – described the challenges of trying to find an adult daycare program with an exercise class in order to maintain her mobility and strength. This became quite complex because most programs in her catchment were in English, even though her neighbourhood had a high Chinese population, and the closest one being offered in Chinese was too far from her home to be convenient or feasible. When she complained that going to this Chinese program was too far, her husband, David, told her, “It is what it is,” as if she should not complain and even be grateful for what she got from the limited resources. These participants’ experiences illustrate a pattern in which they internalized a sense of undeserving feeling or were expected to have gratitude for whatever limited support was available. The repeated dismissal of their concerns, either by professionals or people around them, and messages about resource 122 scarcity reinforced the idea that their needs were secondary or even burdensome. As a result, they self-regulated their requests, hesitating to seek services. 4.3.3.2 Dependence on Services as a Burden to Society as Textually Mediated. The above examples from participants shared a common assumption: Using the government’s limited resources was not right. A critical examination of the three main texts providing the principles of dementia and aging services sheds light on why participants may have felt this way. These texts all either state explicitly or implicitly hint at the message that dependence on services due to dementia or aging causes a burden to society, and services should only be provided to those who have needs. Perhaps the text that makes it most clear that dementia is a burden to society is the Canada Dementia Strategy Act (Minister of Justice, 2017), which states that the goal of the act is “developing specific national objectives in order to improve the situation of persons suffering [emphasis added] from Alzheimer’s disease and other forms of dementia and decrease the burden of those diseases on Canadian society [emphasis added]” (Minister of Justice, 2017, Section 3.1.a). In this description, the word “suffering” frames dementia as a negative experience, reinforcing the idea that dementia is a “burden.” Picking up on the message that dementia is a burden, the Canada Dementia Strategy Report, published following the announcement of the act, makes it even more apparent that dementia is “the major cause of disability and dependency among older adults” (Government of Canada, 2021, p. 2) and draws attention to the economic costs (burden) to society linked to it: 123 Direct health care costs for people living with dementia have been estimated to be three times higher than for those without dementia. It has been projected that the total annual health care costs and out-of-pocket caregiver costs for Canadians with dementia will double from $8.3 billion in 2011 to $16.6 billion by 2031, while indirect economic costs due to working-age death and disability are projected to increase from $0.6 billion to $0.7 billion during the same period. (Government of Canada, 2021, p. 2) The quote attributes invisible blame to people living with dementia who depend on healthcare services as a financial burden to society. To address the dependence on services as a burden to society, there is a hidden message in texts that services are only provided to those who have needs, and these needs refer to physical needs. For example, the BC Senior Home and Community Care Action Plan (2017b) makes clearest that support is based on needs, stating that there are “seniors who experience increasingly complex medical health-care needs and/or fragility” who “need” services and its goal is to “address these needs” (BC Ministry of Health, 2017b, p. 4). The word “need” appears 30 times in 11 out of 14 pages of the action plan. In addition, these “needs” are based on physical criteria (e.g., assistance with daily activities such as grooming, dressing, toileting, and bathing) according to “assessments” by professionals, which shows the influence of the biomedical lens in services, focusing on the physical aspect of health and emphasizing knowledge of the professionals while implicitly discounting the voices of those seeking these supports. Similarly, in the BC Dementia Care Guide, physical or care “needs” based on “screening and assessments” by professionals appear 12 times in this 26-page document. 124 The above texts demonstrate the importance of the message that dependence on services causes a financial burden to society, so services should only be provided to those who have needs and make it clear that these “needs” are defined by health care providers, not the “patient.” These messages reflect a neoliberal discourse that frames the welfare state as a burden on the economy, promotes minimal state intervention, and rationalizes limiting services to only those deemed deserving. The messages also reflect the biomedical discourse, as the “needs” discussed in the text refer predominantly to physical needs identified by professionals in clinical assessments. In the interviews, participants did not explicitly mention being aware of specific texts or hearing professionals cited them. However, their narratives reflected messages that aligned with these texts, suggesting that somehow, these messages were being delivered in a way that shaped their experiences of feeling undeserving or being told to be grateful for services. Not all participants saw themselves as undeserving of services, and some drew attention to the government's responsibility to provide support. For example, Mrs. Fong drew on the language of “should” to describe the government’s responsibility to provide long-term support to people like her: “The government should [emphasis added] build more long-term care for seniors. Everyone will become old … This is something which the government should [emphasis added] do.” Some participants positioned the government’s responsibility to them as a right earned through their historical contribution to society. For instance, Nora thought that nowadays, most healthcare resources go to young people, and little goes to older adults. She felt this was unfair and explained: We [referencing herself and her husband] paid taxes for so many years. Whenever the pay cheque came, a large proportion had already been deducted for the taxes, which I did not 125 even want to look at. I contributed for so many years. My husband contributed even more. The consequences of the neoliberal discourses, which position dependence on services as a burden to society and promote messaging on the importance of maintaining independence as a personal responsibility, reflect the government’s austerity policies in aging and dementia services. 4.3.4 How Austerity Approaches to Aging and Dementia Services Textually Regulate Practices and Shape Experiences Austerity is embedded in neoliberalism. In the following, I will use examples of services to illustrate how the neoliberal ideas that value austerity above shape these services. These service examples include: home rehabilitation taking a reactive approach; social and healthcare services following a narrow and fragmented interpretation of service responsibilities; and brain scan services with narrow eligibility criteria. I will first present participants' experiences of having challenges using services and then explain how these austerity policies textually shaped participants' experiences. 4.3.4.1 Home Rehabilitation Under the Reactive Approach in Texts. A reactive approach to services reflects austerity logics, where the state intervenes minimally and only in crisis, in order to contain public spending (Davies, 2017; Springer et al., 2016; Steger & Roy, 2021). Becky’s story illustrates the reactive approach of home services and demonstrates the tension between the texts guiding service principles and those guiding actual practice. The 126 inconsistency between these different levels of texts reflects the tension between the ideal and reality, demonstrating how neoliberal discourse operates. Specifically, those texts outlining principles of services promote a proactive approach, recognizing the value of providing services to sustain the quality of life to prevent health issues before they escalate; This is the ideal. However, those texts guiding actual practice predominantly reflect a reactive approach, providing services only after the issues have been intensified. In other words, the ideals articulated in the texts outlining service principles do not translate to the texts guiding actual practice. Becky’s story illustrates this. The health authority gave Becky a 12-week home physiotherapy program after discharge from the hospital due to a Parkinson’s-related fall. A rehabilitation assistant, supervised by a physiotherapist, went to her home to instruct and monitor her doing exercises. At the end of the twelve weeks, Becky felt that she had regained her mobility and strength from the program, so she wanted to extend it. She wanted to take a proactive approach to build her mobility and strength further to prevent falls and re-admission to the hospital. However, she and her husband, David, were told that the only way to extend the program was to be re-admitted to the hospital (i.e., create a medical crisis). Both Becky and David felt this was not right. David: They [referencing the physiotherapist and rehabilitation assistant] should not be like, “The program has already finished. Dying or not is your business.19 We don’t care.” Becky: They cancelled the program carelessly. 19 This is a Cantonese idiom, which means none of our business 127 At an initial glance, this experience does not appear to be supported by the texts outlining the principles of this care. Specifically, the texts providing principles of services seem to suggest a proactive approach. For example, the BC Dementia Action Plan states its goal is to “provide early, [emphasis added] appropriate and effective care and support to assist people with dementia” (BC Ministry of Health, 2012, p. 4). It also acknowledges that “early [emphasis added] supports are critical components of dementia care” and that “proactive [emphasis added] community care supports early [emphasis added] recognition, diagnosis, and treatment, resulting in better patient care and outcomes” (BC Ministry of Health, 2012, p. 13). Likewise, the BC Dementia Care Guide, as the updated version of the action plan, also supports the “early” care and support mentioned in the BC Dementia Action Plan. (BC Ministry of Health, 2016, p. 4) However, a closer look at the texts that guide actual practice illuminates how Becky’s experience is indeed textually framed. The BC Home and Community Care Policy Manual, particularly its community rehabilitation section (BC Ministry of Health, 2023), maps how professionals decide whether clients can access community rehabilitation services, including home physiotherapy. In this text, a less proactive and more reactive message is visible. For example, the manual suggests that professionals should “ensure clients identified as having the greatest need and urgency receive priority [emphasis added] access to the relevant service” (BC Ministry of Health, 2023, Section 4.A). Priority of community rehabilitation services is given to a person who is “discharge(d) from an acute care hospital” or has “the need for hospital or emergency department services or admission to a long-term care home” (BC Ministry of Health, 2023, Section 4.E), indicating a focus on post-acute or pre-emergency medical care rather than proactive community support. This explains why – even though her initial fall was directly associated with 128 deterioration related to her Parkinson’s – Becky was told that she could only extend the program if she were re-admitted to the hospital. The reactive approach regulated the rehabilitation professionals' decision about whether or not the home physiotherapy program could be extended, which ultimately led to Becky’s experience of being cut off despite her perceived need and benefit. Of note, the “priority” in the text does not include quality of life, which further fosters a more reactive approach. A proactive approach needs to be taken to enhance the quality of life. This ensures that people have the support to build their capacity before the health issues escalate. For example, Becky hoped extended service after 12 weeks would enhance her quality of life by further building her mobility and strength and preventing future falls and re-admission to the hospital. However, taking a proactive approach meant increased use of scarce resources and increased spending, which is inconsistent with the concept of austerity under neoliberalism. Such interpretation also supports the message that services are to be rendered only to avoid further costs (i.e., acute or long-term care) and are not related to prevention or quality of life. 4.3.4.2 Rationing the Provision of Social and Health Care Services Under Narrow and Fragmented Interpretation of Service Responsibilities in Texts. In addition to a reactive approach, a narrow and fragmented interpretation of service responsibilities is another manifestation of austerity in policy, as it legitimizes the rationing of services and shifts responsibilities from the state to other actors, thereby contributing to reduced public spending (Ågotnes et al., 2024; Baines et al., 2022). Two examples of attempts to use 129 services, home care and dementia consultation, following a narrow and fragmented interpretation of service responsibilities fueled by the biomedical lens, as experienced by one participant, Sam, will help explain how the texts rationed the provision of services and led to Sam’s perception that his needs were not being met. Sam was told by his home-health case manager, following her assessment of him and his rented place, that he would likely need bathing assistance in the future as his Alzheimer’s progressed. However, this would not be feasible in his existing accommodations since it was too small, so he should consider moving into somewhere with a larger bathing space. Based on this advice, he decided to apply for subsidized housing that included a larger bathing space. He asked his case manager to help complete the necessary paperwork. She told Sam that applying for subsidized housing “was not her responsibility.” Sam commented that the case manager “was not quite helpful” and that he could not understand why she had such a narrow scope of services and limited flexibility to accommodate his request, which was indirectly related to meeting his future needs to manage daily life. The responsibility of a home health case manager was checked by referring to the relevant text on the health authority website, which is “to assess care needs, determine eligibility for services and facilitate access to care, services and programs [emphasis added] such as adult day programs and home support” (Vancouver Coastal Health, 2024, Section Case (Care) Managers). It is still unclear why a case manager is responsible for facilitating clients’ access to “adult daycare programs and home support” but not subsidized housing, especially since all these are community resources. The Home and Community Action Plan suggests one possible reason is 130 that access to subsidized housing is not under “home health services,” but “adult day programs” and “home support” are: Health authority [emphasis added] programs support eligible B.C. seniors to remain living in their own homes as long as possible through publicly subsidized home health services [emphasis added]. Community nursing, community rehabilitation, adult day programs, home support for assistance with activities of daily living20, and at-home end-of-life care are examples of these services. Family caregivers, volunteers and community services [organizations] [emphasis added] are relied upon to provide other supports [emphasis added] required. (BC Ministry of Health, 2017b, p. 3) Using specific examples, this quote helps explain the case manager’s narrow focus on services. The description seems to create a strict division between “home health services” and everything else, othering everything which is not within the scope of “home health services.” This speaks to the narrow and fragmented provision of services. Also, the quote states each party’s responsibility clearly: The “health authority” is responsible for “home health services,” while “family caregivers, volunteers and community services [organizations]” are responsible for “other supports” (i.e., everything else). These strict divisions might influence the case manager to be cautious about providing services that could fall outside her responsibilities. In addition, the examples of “home health services” listed in the quote tended to be services meeting the physical needs of health, which shows the influence of a biomedical lens. The biomedical lens might textually organize the practice of the case manager to focus on the physical aspect of health and needs. This shaped Sam’s experience, feeling his need for housing, a part of his holistic needs, 20 “Activities of daily living” refer to physical tasks that a person needs to care for themselves, such as grooming, dressing, toileting, and bathing. This leads back to the earlier section on how care is defined by physical care needs. 131 was not met. The intention behind these strict divisions of services and labour could be related to fiscal constraints and a lack of resources in the healthcare system, as professionals from the health authority are paid more than their counterparts in community service organizations, and family caregivers and volunteers are unpaid. This sheds light on how fiscal priorities may be driving the provision of governmental support, showing a neoliberal rationing of services. While this narrow and fragmented interpretation of service responsibilities would affect all people living with dementia, it demonstrates how people of low socioeconomic status, like Sam, may be more impacted. Sam indicated that he had not had a stable job in the last 15 years, did not own property, and had a limited pension and saving since retirement; he did not have the same options that those with more financial resources had. For example, while someone with more means might easily rent a bigger place by paying more, or hire private home care, which has fewer restrictions on the space required for care provision, Sam’s only option was subsidized housing. Also, the intersection of his low socioeconomic status and his immigrant background and dementia might have aggravated his financial condition. Sam and his wife could only rely on Sam’s limited pension and savings because his wife, who used to be a Chinese teacher in Hong Kong, could not find a job after immigration due to language. After Sam’s retirement, tutoring provided some additional income, but he could no longer do so because of his cognitive decline. I will give another example from Sam’s experience with dementia consultation, following a narrow and fragmented interpretation of service responsibilities. Sam’s family physician referred him to a neurologist, but he could only see the neurologist once every nine months. Sam began to feel that his cognition went “on and off,” but there were still a few months left before he could 132 see the neurologist, so he wanted to talk to a physician about this. However, he struggled to tell his family physician, whom he saw every month: “He might not be able to help me because this is a brain issue. It is not the job of my family physician, who can only look at general things.” (“General things” here referred to checking blood pressure, which Sam later explained). This quote shows that the family physician left Sam with an impression of a clear delineation of the “jobs” between a family physician and a specialist, which left Sam feeling unsupported and uncertain about how to proceed. This speaks to the fragmentation of the system as well, which, as noted above, leaves people powerless and unable to navigate the system. The BC Practice Guidelines for Family Physicians on Referrals, which guide the referring practice of family physicians, suggest that there are clear financial motivations that helped shape Sam’s experiences. Specifically, when a family physician refers a patient to a specialist for a particular aspect of care, “the referring practitioner [referencing the family physician] generally should not charge for this aspect of the patient’s care [emphasis added] unless and until the full responsibility is returned to him/her” (BC Family Doctors, 2022, Section D.2.5). The strict division of billing might help explain why Sam’s family physician hesitated to answer Sam’s questions related to his Alzheimer’s, or felt it was not his responsibility to respond, given that he could not bill for this aspect of care. The same guidelines also suggest that: A consultation for the same diagnosis is not normally payable as a full consultation unless an interval of at least six months has passed [emphasis added] since the consultant [referencing the specialist] has last billed a visit or service for the patient. (BC Family Doctors, 2022, Section D.2.2.i) 133 One would expect that this billing guideline might influence how frequently Sam’s neurologist scheduled follow-up visits. The written guideline that only the specialist, not the family physician, can be billed demonstrates how the strict division of services between the family physician and specialist is structurally maintained. When this guideline is combined with the other guideline that the specialist cannot be fully billed for seeing the person for fewer than six months between visits, the patient is left in a vacuum for certain aspects of care. This raises the question of whether these divisions would harm a person's access to the care they need. This disconnection of services misses the whole picture of a person, reflecting the fragmented nature of the biomedical lens as it informs service provision. The intention behind these guidelines is likely to save costs, avoiding paying two physicians for the same aspect of care and reducing the number of specialist visits to curtail the “financial burden” on healthcare under a neoliberal context. An unintended repercussion may be that it leaves patients feeling confused and unsupported. 4.3.4.3 Brain Scan Services Under Restrictive Eligibility Criteria in Texts. One further manifestation of austerity in policy is the use of restrictive eligibility criteria: narrow or restrictive eligibility criteria help to rationalize the limited provision of services and, in turn, help contain public spending (Grenier, 2020; Rice & Prince, 2013). Nora’s experience helps demonstrate this: She was denied a brain scan due to a restrictive age-based eligibility criterion. Similar to June’s experience, which was previously discussed, Nora indicated that she asked her 134 family physician for a brain scan because she was experiencing memory loss, but this request was denied on the basis of age. “He does not let me do the scans when I get old … He said, ‘When you are over 80, you don’t need to do the scans.’” Nora added that her husband, who saw the same family physician, also seemed to be declined for other medical tests because of his age. It was her interpretation that: “When we [referencing herself and her husband] are over 80, people [referencing the physicians] do not care about us.” She reflected: “‘Young people’s lives are important.’ I feel they [referencing the professionals] sometimes think that way”. She went on to challenge this practice, noting that “they should take care of us, the seniors. There are now many seniors.” Apparently, Nora’s understanding that she was denied access to a brain scan because of her age –and is therefore less deserving – finds some support in the texts. The BC Practice Guidelines for Primary Care Physicians on Dementia and Cognitive Impairment include a restrictive age-based criterion in the text, indicating that patients over a certain age would have less access to the service. The guidelines recommend physicians only make a referral to “Magnetic resonance imaging (MRI) of the head” (i.e., brain scan) for patients if they meet one of nine criteria, and the first one listed is: “The patient is less than 60 years old” (Doctors of BC & Ministry of Health, 2023, Section Steps to arriving at a diagnosis). The guidelines do not specify if the criteria are listed according to importance, but listing it as the first criterion may visually leave the user of the guidelines (i.e., the physician) with the impression that age is the most important one. Interestingly, Nora indeed met four of the other nine criteria, according to her sharing of medical history, “There is a suspicion of cerebrovascular disease,” and “The patient is on anticoagulants 135 or has a bleeding disorder,” as well as her cognitive decline, “The course of progression [is] rapid” and “There are new localizing neurological signs or symptoms” (Doctors of BC & Ministry of Health, 2023, Section Steps to arriving at a diagnosis), and yet, she was not referred for further testing. This suggests that at the heart of these ruling relations lies ageism, manifested in a systemic preference for younger individuals in the allocation of care resources, which further marginalizes older people in need of support. 4.3.5 Summary In this section, I showed how the experiences of Chinese people living with dementia using formal support are textually shaped by neoliberal ideas and revealed the neoliberal discourse embedded in these ruling relations. These neoliberal ideas are fueled by the biomedical lens. First, I showed maintaining independence through active aging as a personal responsibility. This intertwines with dementia as incapability. These ideas shaped participants’ experiences: Those who did not want to actively age felt pressured to do so, while those who wanted to actively age found limited suitable opportunities. I then presented that dependence on services is a burden to society, so state intervention should be limited based on needs, as outlined in texts. This shaped the experiences of participants who felt they did not deserve or were being told to be grateful for services, thereby hesitating to ask for them. 136 Austerity policies in services are the consequences of neoliberal ideas of independence as a personal responsibility and dependence as a burden. I presented examples of austerity policies embedded with neoliberalism. All these austerity policies textually shaped participants' experiences, hindering their use of services. 4.4 “My Daughter Has Her Own Problems Too.” – The Confluence of Participants’ Wish Not to Burden Families and Government’s Expectation of Families to Provide Care In the previous section, I showed a neoliberal idea in texts that there is a shift of responsibility of care from the government to individuals. The shift indeed is also to families. In this section, I will look deeper into this. To do this, I will demonstrate how a Western understanding of independence and autonomy dominates understanding of decision-making in a way that is inconsistent with a least some of the participants’ relational decision-making orientation. Specifically, while some people living with dementia clearly supported ideas related to individualized autonomy and decision-making, others illustrated a more relational approach to decision-making that drew in concerns and caring about family. These participants’ relational decision-making shows a disjuncture from the dementia service texts. Statistics suggest that around 80% of support for older adults with multiple chronic conditions living at home is provided by family (Williams et al., 2016), and this extends to 90% of the support for people living with dementia (Alzheimer’s Society of Canada, 2025). This may reflect 137 the preference of some older adults and people living with dementia, which society seems to assume, but this is not necessarily the case for all, as shown in some of my participants. Specifically, some of the participants in this study preferred to limit the involvement of their families, as they did not want to cause them a burden and would, hence, instead use services. This may reflect a more relational approach to decision-making. However, their experiences were that they often had to rely on their family because the services were not available. Partially, this is reflected in some of the texts, which clearly expect families to provide care. Additionally, the expectation for families to provide care could be even more pronounced towards Chinese, as shown in the literature, due to the assumption that family care is their preference. Although this may be true for some Chinese, my participants show that this may not always be true. This assumption might textually influence professionals to hold stronger expectations of Chinese families to provide care, thereby shaping participants’ experiences. 4.4.1 The Disjuncture Between Participants’ Relational Decision-Making and Assumption of Individual Decision-Making in Texts The importance of relational decision-making emerged strongly in the stories of these participants. Specifically, ten participants explicitly talked about how concern for others, especially their families, was an important consideration when making decisions about their dementia and the use of services. For example, as discussed in June’s story, she preferred to join activities in person. Nonetheless, she chose to join activities via Zoom because she did not want her husband to worry about her. Similarly, Sam did not want to take the dementia medication prescribed by his neurologist because he was concerned about the negative impacts it would have 138 on his body. However, demonstrating a more relational decision-making process, he still took it. When asked to clarify why he was taking the medication despite his concerns, he explained that: Because she [referencing his wife] loves me. She cares about me. So, she always asks me to take the medication … I respect my wife's opinion, as the physician said taking the medication still has benefits. So, I did my best to take it. These participants' narratives suggest discord between their decision-making practices and the assumptions underpinning the main government documents on dementia and aging services. Specifically, while participants described relational autonomy, that is, decision-making based on the consideration and involvement of others (Mackenzie, 2021), many of the texts frame autonomy as an individual concept. For instance, the Canada Dementia Strategy Report suggests one of its principles of dementia services is “respecting and preserving an individual’s [emphasis added] rights, autonomy and dignity” (Government of Canada, 2021, p. 7). This thrust for individual autonomy and independence is similarly visible in the BC Senior Home and Community Care Action Plan, which states one of its aims of senior care services is for older adults “to retain as much function as possible to engage in their community, with continued autonomy to shape their own life and story [emphasis added]” (BC Ministry of Health, 2017b, p. 2). Nevertheless, participants’ interviews showed that some made decisions considering others; these decisions might not be their preferences and even against what they considered important to themselves. Unlike the texts suggest, autonomy and decision-making could be relational instead of individual. 139 4.4.2 Problematic: Participants’ Preference to Limit the Burden of Families in Care, but Dependence on Family Due to Gaps in Services A relational approach to decision-making may help explain why some participants preferred, or even prioritized, limiting their family member’s involvement in their care: Specifically, they did not want to be a “burden.” Even though most of the participants recognized that, because of dementia, they now needed, or would in the future need, help, ten participants expressed a reluctance to turn to their family as they did not want to be a “burden.” For example, in addition to her cognitive issues, Catherine suffered from back pain and sight problems. She lived alone in subsidized housing for older adults. Her main support was her daughter, who had training as a nurse. Catherine was able to describe the many ways her daughter had been a support to her – for example, helping her locate a family physician and providing healthcare advice – but noted, “I am grateful. But my daughter has her own problems too. If I can handle [my issues], I do my best to handle them.” While some did not mention who they preferred to turn to for help, many of the participants were clear that their choice was to use government services. This was not only because they did not want to be a burden to their families, but also, in some cases, they expected government services to be better able to meet their needs. For example, following a fall, Mrs. Fong’s cognition deteriorated, and she was diagnosed with dementia. Her legs also lost strength. She could no longer care for herself and moved from Toronto to live in Vancouver with her retired son and daughter-in-law. At the time of the interview, she had been in Vancouver for about a month. Mrs. Fong and her family explored home support services, but the health authority staff said that she did not fulfill the residency requirement in British Columbia for three months, so they could not 140 assess her until this requirement was fulfilled. As a result, her care mainly fell on her family. Although her family repeatedly told her that this was fine for them, she could see how exhausted they looked and was considering a move into a care facility rather than continuing to be a burden to her family: Well, I am like a burden to the younger ones [referencing her son and daughter-in-law]. They are tired. I know that … I do not fear long-term care. I think getting old is a burden to other people. I am now still able to talk. I may be clumsier later. If I can go to long-term care … The staff there are trained, and they all have the depth of knowledge and skills to look after older adults. However, despite their preferences for receiving public support, participants’ narratives highlighted the pressure to have their families supplement the government service gap. For example, Becky received her diagnosis of PSP21 from the physician in one of her admissions to the hospital after a severe fall. She and her husband, David, described the shortcomings and challenges associated with getting more information about her diagnosis: Interviewer: How did the physician explain PSP to you both? Becky: No explanation David: He only printed a copy of what PSP was about from Wikipedia. Interviewer: Really? He did not tell you anything about the PSP. Becky: No! Interviewer: So, how did you two learn more about PSP? 21 As suggested earlier, PSP means Progressive Supranuclear Palsy, a rare type of Parkinson’s. 141 David: I sent several things to Hong Kong to my sister because her children are physicians. She sent the translation of the explanation of PSP here. In Chinese, PSP was translated as Atypical Parkinson’s. PSP is a cousin of Parkinson’s. It is a kind of Parkinson’s. Our son also looked up the information. The example showed that Becky had family support from David and extended family members to look for information about PSP. Otherwise, she might have limited clues about her diagnosis, as she could not search for the information by herself due to her limited functionality caused by PSP. Family members filled in the gaps for the physician to help Becky understand the diagnosis. Becky’s example also shows the close connection between her and her husband, who lived in Canada, and their extended family in their place of origin. They had their feet in two systems, partially because one was not working. Becky’s story indicates the unique and interesting ways families (i.e., sending information using information and communication technology) were involved in supplementing government care, even in a context of vast geographic distance. Another participant, Nora, narrates an example illustrating how family fills the service gap in emergency transportation services. One late night, Nora suddenly felt unwell, and her son helped her call the ambulance to the hospital emergency department. She recalled, “The ambulance did not even come. After one to two hours, we called it again, and they told my son, “Send your mom to the emergency department.” The ambulance service later explained that they were out of capacity. At the hospital, medical testing, including an MRI, revealed that Nora had had an aneurysm. It was fortunate that Nora’s son could drive her to the emergency department to fill the gap in the ambulance service so that her aneurysm could be found and controlled, preventing her cognitive impairment from getting worse. 142 4.4.3 The Expectation of Families to Provide Care in Texts Underneath the stories is an expectation of families to provide care, an idea promoted by neoliberalism, shifting care responsibilities from the government to families, a process often referenced as responsibilization, to cut public spending. In the following, I will first present the main texts on providing principles for dementia and aging services to highlight how responsibilization is used to shape participants’ accounts. I will then examine the relevant text providing the practice guidelines, BC Home and Community Care Policy Manual, to illustrate how this expectation influences the practices of professionals, thereby shaping the participants' experiences. Messaging related to the expectation for families to provide care is readily visible in texts providing principles for services. For example, the BC Dementia Action Plan mentions that "community programs and services support people with dementia to maintain their ability to live independently at home” (BC Ministry of Health, 2012, p. 13). Of note, this document subtly shifts the focus from a discussion of government support to “community” support: In other words, this document is not proposing “government” but “community” support, thereby arguably offloading the support to the “community.” As previous literature noted, the focus on “community” care has been strongly critiqued as, in fact, a euphemism for “family” care (Dalmer, 2019). Without defining “community,” it subtly locates family at the heart of this “community-based approach,” as shown in the quote below: 143 With an available caregiver [emphasis added], many seniors with dementia and health instability were still able to be cared for at home … the availability of an able caregiver, and the caregiver’s capacity to cope with the person with dementia’s needs have a significant influence on the ability to support care at home, perhaps even to a greater degree than the status of the individual’s cognitive impairment … Family members [emphasis added] and other caregivers are able to support the person throughout the course of the disease (BC Ministry of Health, 2012, pp. 12–13) Moreover, shifting the government’s responsibilities for care to families has gender implications: The expectation of families to provide care affects all family caregivers, but women are more likely to be affected, as most family caregivers are women (Oakley, 2018). Using an intersectionality lens, the inter-relationship between this neoliberal expectation of families in aging or dementia care and gender becomes more obvious. Racialized women can be even more affected, considering that they are more likely to be of a lower socio-economic status and thus are less likely to be able to afford private care resources. Furthermore, there seems to be an underlying assumption in this document that people living with dementia are surrounded by family. In this short 22-page document, people living with dementia and their families are almost always put together. There are 21 places where they are put together, which may leave readers the impression that all people living with dementia have families and families are always available to them, for example: The Provincial Dementia Action Plan provides important areas of focus to inform this work for those with dementia and their families [emphasis added]. (BC Ministry of Health, 2012, p. 4) 144 Understanding dementia and the role we can all play to support and care for those living with it are important to support a better quality of life and the best possible outcomes for those with dementia and their families [emphasis added] (BC Ministry of Health, 2012, p. 6) People with dementia and their families [emphasis added] are a priority population for integrated primary and community care (BC Ministry of Health, 2012, p. 16) Compared with the 21 places where people living with dementia are put together with their families, there are only nine places where people living with dementia are mentioned alone, and most of these places are about how people living with dementia are cared for at home in the community, which indirectly links with families who are the main caregivers. For example, The action plan reflects this system-wide innovation and change focus, with a goal to increase individual, community and health service capacity to provide early, appropriate and effective care and support to assist people with dementia to remain at home and in their communities [emphasis added] to the greatest extent possible. (BC Ministry of Health, 2012, p. 4) Community programs and services support people with dementia to maintain their ability to live independently at home [emphasis added] (BC Ministry of Health, 2012, p. 13) This assumption that all people living with dementia have families who can support them justifies the neoliberal expectation of families to provide care. However, people living with 145 dementia may not have families. Interestingly, while the document mentions support for families to provide care for people living with dementia, it does not mention what the government does to support people living with dementia without families. Even if the people living with dementia have families, there may be only a few family members who can provide support. This is especially the case among the participants of this study, as they were immigrants, and most of their families were geographically distance in their places of origin (e.g., Becky, whose family members were mostly in Hong Kong), thereby limiting the support they could provide, particularly in-person support. The assumption that all people living with dementia have families who can support them impacts everyone living with dementia, with people without families and immigrants being particularly affected. The BC Dementia Care Guide, as an updated version of the BC Dementia Action Plan, is similarly built on the expectation of families to provide care so that people living with dementia can stay at home. For example, it states: “The majority of care and support for people with dementia is provided by caregivers such as family members, friends and/or neighbours … This support allows those living with dementia to remain safe at home for as long as possible” (BC Ministry of Health, 2016, p. 5), and “Caregivers play a critical role in allowing people with dementia to remain safely at home” (BC Ministry of Health, 2016, p. 11). It clearly states the reason for “care at home” is to “reduce or delay the need for unnecessary hospital and/or residential care admissions” (BC Ministry of Health, 2016, p. 11). The text reveals that care-at-home policies may be motivated less by the hope that people age at home and have a better quality of life than by the impetus to reduce healthcare costs, as institutional care is more 146 expensive than community care. In other words, they are part of the austerity policies under the neoliberal context. The document acknowledges that “The demand placed on caregivers can affect their physical, emotional and financial well-being. It is critical that caregivers are supported to continue in their caring roles” (BC Ministry of Health, 2016, p. 5) and “Caregivers need access to a range of supports, including flexible respite programs” (BC Ministry of Health, 2016, p. 11). However, support is not positioned as a right or expectation, but contingent upon a professional assessment of need. For example, the BC Home and Community Care Policy Manual states, “Health authorities can approve … respite for their caregiver through a clinical assessment by a health authority health care professional” (BC Ministry of Health, 2023, Section 4.B.1). I question why an assessment is needed for respite for their caregiver. If caring for the client is the government's responsibility, families should have access to respite care regardless of the reason for the request. Namely, assessment is not needed. The requirement for assessing the caregiver implies that it is the family's responsibility to provide care. The BC Senior Home and Community Care Action Plan suggests that the government provides community support services, including home support. It states that the reason behind this is “keeping seniors from requiring residential care,” again, showing the cost-saving intention of these services under a neoliberal context (BC Ministry of Health, 2017b, p. 4). Yet, the same document also outlines restrictions to the government’s role in these services, stating, “it is not government’s role to provide for all quality of life considerations,” (BC Ministry of Health, 2017b, p. 2) and “there are many existing community supports that can and should be engaged to 147 support the care of seniors,” with examples of these “community supports,” including “non-profit organizations, volunteers, denominational or church-based services, and family caregivers [emphasis added], among others” (BC Ministry of Health, 2017b, p. 2). These examples show the broadening of what “community supports” means, and family is explicitly positioned as “community supports.” Moreover, the government seems to be making it clear that this is not its responsibility except as a last resort, reflecting the neoliberal belief in minimal state intervention. 4.4.4 How the Expectation of Families to Provide Care Textually Mediates Services and Shapes Experiences The presumption that families will provide care is also found in the text that provides the practice guidelines for home and community care, the BC Home and Community Care Policy Manual. Mrs. Fong’s narrative illustrated how the presumption can prevent access to home support services. The health authority explained to Mrs. Fong and her family that they could not begin assessing her for the service because she had not fulfilled the three-month residency requirement. However, the manual indeed suggests that this requirement can be waived. Nonetheless, the waiver only applies when: All alternatives have been explored, including the availability of caregivers to provide care to the applicant, [emphasis added] or the ability of the applicant, family, spouse or significant others to purchase services privately on behalf of the applicant during the period of time that the individual is establishing residency. (BC Ministry of Health, 2023, Section 2.B) 148 In other words, clients are only deemed eligible for the waiver if they show that they do not have caregivers, who are their families in most cases, to provide care for them, reinforcing the hidden expectation of families to provide care; the waiver only comes into possibility when clients demonstrate that they do not have families to provide care for them. The health authority staff who worked with Mrs. Fong and her family did not mention at any point that there was a waiver; perhaps they didn’t realize this, but more likely because they thought that her family was available to care for her. This, in turn, shapes Mrs. Fong’s experiences of being unable to use the services. On a related note, although three months does not seem long, the physical and cognitive conditions of Mrs. Fong could have significant changes, especially since she had just had a fall. Also, Mrs. Fong might not immediately get home support services after she fulfills the residency requirement. She still needed to wait for the health authority to assess her and arrange the services. Interestingly, the manual does not specify the timeframe from contacting the health authority to obtaining an assessment, nor does it clarify the duration between the assessment and initiating home support services. From my practice experience, the whole waiting process can take two months or even longer. This means that Mrs. Fong might live without services for at least five months. The expectation of family care may be even stronger for Chinese families because of the assumed role of filial piety. As noted, filial piety signifies the duty of adult children to provide care for their aging parents, reciprocating the care they once received during childhood (Chan et al., 2023; Chang & Schneider, 2010) As mentioned, literature suggests that there is an assumption in society on how Chinese understand and practice filial piety and use services (Lai, 2008; Wu et al., 2010). This can lead professionals to see Chinese people living with dementia as 149 even less in need of services than their Western counterparts, as the professionals may see family care as a cultural norm among the Chinese. When I reviewed texts on dementia and aging services, I did not find explicit instances of assuming Chinese or other racialized or cultural groups in family care and service use. At the same time, I also did not find content that actively addressed such an assumption in service provision. However, as the literature suggests, this assumption persists in society, suggesting that presumptions of family care may exert particular strength in shaping the experiences of Chinese. In other words, when the expectations of families to provide care and the societal assumption of culture come together, access to services can be even more challenging for Chinese people living with dementia. 4.4.5 Summary In this section, I first demonstrated that participants approached decision-making regarding dementia and service use relationally, prioritizing the perspectives of others rather than making choices solely based on their own needs. This relational approach contrasts with the assumptions embedded in dementia and aging service texts, which presume that individuals make decisions individually. This reflects the influence of a biomedical lens and neoliberalism, which emphasize individual autonomy as central to decision-making while overlooking relational factors. On the surface, the importance of considering others when making a decision about their care needs could potentially be read as promoting family-based care. However, the preference for relational decision-making can also help explain why some participants preferred to minimize their families' involvement in their care, hoping to avoid burdening them and instead opting for 150 formal support services. Their experiences reveal that their families continued to step in to compensate for gaps in government services, contradicting their intentions and reflecting the system's inadequacy in meeting the participants' needs. The expectation of families to provide care appears to shape participants’ experiences textually. This expectation aligns with neoliberal responsibilization, which is a process in which care responsibilities are shifted away from the government and onto families. Such an austerity approach reinforces the given paucity of government support that forces families to fill the gap. While the expectation may apply to all families seeking support, this implicit messaging can be even more pronounced for Chinese individuals, where there is a tendency to assume family care as a cultural norm in society. This assumption could influence professional practices, textually reinforcing stronger expectations of familial care and further shaping participants’ experiences. 4.5 “Those Activities Were All in English. I Said If They Were in English, I Would Not Be Able to Understand.” – The Invisibility of Intersection of Race with Age and Dementia Up to this point, I have described how ruling relations, shaped by the biomedical perspective and neoliberalism, have textually shaped participants' challenges in using services—challenges that undoubtedly also affect other older adults and individuals living with dementia. In the next section, I will begin to draw attention to how the intersection of race with age and dementia places those who are Chinese as particularly vulnerable when accessing services. I will draw attention to the invisibility of race – and the inattention given to the intersection of race with age and dementia – in texts. The intent is to demonstrate the influence of the colour-blinded nature of the biomedical lens and explicate how this coordinates the expectation and experiences of racialized people living with dementia in problematic ways. In particular, I will draw attention to 151 the lack of language-appropriate services as an indicator of racism and will examine how even anti-racist texts fail to address this. This draws attention to how ageism and ableism thrive under a neoliberal context. 4.5.1 Problematic: Experiences on Challenges Using Services due to Language The importance of language emerged strongly in many of the participants’ stories as directly relevant to their experiences using formal services. For example, Mr. Zhang, who had dementia, lived in subsidized housing for older adults with his wife, Mrs. Zhang, who was his primary family support person. Due to Mr. Zhang’s dementia and Mrs. Zhang’s health issues, they needed in-home support services. They discussed the challenges of trying to access the support, given that the new building manager only spoke English. Mrs. Zhang: The new building manager is Filipino. We don’t know this person well … [and we have no one to turn to help]. Well, my son is busy. My daughter-in-law is Caucasian. We seldom communicate. Interviewer: I see. You two speak little English. Mrs. Zhang: I don’t know English. Interviewer: How about you, Mr. Zhang? Mr. Zhang: (shaking head) As mentioned in June’s story, she wanted to join the self-support group for people living with early-stage dementia, but did not go because of language. Susan described a similar challenge. When Susan learned about the Alzheimer’s Society through a presentation delivered at her 152 church, she wanted to join their self-support group for people living with early-stage dementia. She did not join, though, because she realized it was not for her, as it was in English only. Susan: I am Chinese. All services [referencing self-support groups] in the Alzheimer’s Society are for Westerners. They speak English. If I go, I will inevitably feel a bit of distance. Interviewer: I see. So, do you think most people going there are Westerners? Susan: Yes, I think most of them are Westerners. They can communicate relatively easily. We Chinese may have a bit of challenge [in communication] or a bit of challenge in expression. Susan had a history of mental health issues in addition to caring for family members with mental health issues for many years, and had been going to support groups on mental health in Chinese. She knew how she could benefit the most from support groups: expressing herself, communicating with others, and building relationships. She did not feel that she could benefit from the self-support group for people living with early-stage dementia when there were important language issues. Occasionally, Chinese services were available, but did not suit the situation of the participants. For example, Becky, who had PSP and needed exercise services, wanted to join an adult daycare program, which involved a weekly exercise session. Had she spoken English, she could have used an adult daycare program in her neighbourhood. Instead, the closest Chinese adult daycare program available to her was about a 30-minute drive from her home. Due to her PSP, it was tiring for her to travel far, even though her husband, David, drove. In her mind, the ideal would be to go to a Chinese adult daycare program close to her home, but this option did not exist. 153 One thing to highlight is that the above participants lived in neighbourhoods with more than 20% Chinese population (Statistics Canada, 2023a). Given the high number of Chinese-speaking people living in these neighbourhoods, it is particularly unsettling that these participants have limited Chinese-speaking services to assist them in dealing with their cognitive decline, which resulted in limited use or reliance upon services that did not suit their situation. Using an intersectional lens, the problematic is rooted in the intersection of language with age and dementia, leaving the participants marginalized in the use of services. 4.5.2 The Inattention to Race in Dementia Service Texts and How It Textually Organizes Services and Shapes Experiences Both the literature (Gee & Ponce, 2010; Saha et al., 2007) and my lived experience advisor suggest that the lack of language-appropriate services to racialized groups is a form of racism. Nonetheless, in the main dementia and aging service texts, the words “race” and “racism” do not appear. What is visible are the “clean substitutions” for them. For example, the documents make reference to “ethnic” and/or “culture” (Government of Canada, 2021) or use language such as “multicultural,” “immigrant,” and “ethnocultural” (BC Ministry of Healthy Living and Sport, 2013). For example: Work and/or consult with the Multicultural Advisory Council and the Joint Federal-Provincial Immigration Advisory Council to ensure that older people from immigrant and ethnocultural communities can access the information and services they need. (BC Ministry of Healthy Living and Sport, 2013, p. 25) 154 Provide appropriate and culturally sensitive treatment (BC Ministry of Healthy Living and Sport, 2013, p. 10) Cultural competency training needs to be a component of this instruction to promote respectful and responsive care. (BC Ministry of Healthy Living and Sport, 2013, p. 14) The invisibility of “race” by replacing it with “culture” and “ethnicity” is recognized in critical theories on race literature as colour blindness – a form of racism (Park, 2005). The reliance upon a biomedical lens further perpetrates racism because it, too, is colour-blind in nature, assuming that there are universal biomedical solutions to all problems of humans from diverse backgrounds, including race. While texts do seem to address this through the language of “culturally sensitive treatment” or “cultural competency training,” these fail to address the power dynamics inherent in racism. The invisibility of race in the texts that organize services for those with dementia has implications for service use. For example, both Susan and June mentioned self-support groups: In BC, the Alzheimer’s Society runs 13 self-support groups. Twelve are in person, and one is online. All are in English. In principle, the self-support groups welcome all people with early stages of dementia, as the promotion material of the group on the Alzheimer’s Society website states: You [emphasis added] are not alone. There are other people to share the journey with you … Early-stage support groups provide a place for people [emphasis added] living with early symptoms of dementia to come together with others also living the dementia experience 155 and discuss the impact of the disease, share stories, experiences and learn from one another about how to live well with dementia. (Alzheimer’s Society of BC, 2024b, Section Early-stage support groups for people living with dementia) It does not specify who “you” or “people” are. In theory, “you” and “people” can be anyone living with dementia. Nonetheless, if the groups are only in English, it becomes clear that “you” is not referencing people like June and Susan, who cannot participate because they either lack sufficient English language skills or have lost their secondary English skills because of dementia. They ARE alone! This text assumes universal access to services while ignoring systemic inequities, particularly for individuals with limited English proficiency, many of whom are racialized. Racism is often covert, that is, not explicitly discriminating against racialized people, especially in systemic forms that are deeply embedded within institutions. Racism operates through various mediums, and language is one of them (Ahmed et al., 2024; May, 2023). When the requirement for English intersects with dementia, which can affect second language ability, those who do not speak the language are excluded. The requirement for English creates significant barriers to using services for those with limited English proficiency, leading to marginalization and inequity. Although some racialized individuals are fluent or even native speakers of English, and some White individuals struggle with it, the issue of language inaccessibility is apparent within the context of immigration, particularly among first-generation immigrants – many of whom are cultural and language minorities – as is the case for all my participants. As suggested, in Canada, 156 86% of immigrants are racialized (Government of Canada, 2022). This demographic reality makes the link between language barriers and racial inequities clear. The text quoted above about the self-support group is colour-blind: The services seem to welcome all but, indeed, exclude racialized people. This requirement of English shows systemic Whiteness, a requirement that unintentionally marginalizes racialized people and inadvertently benefits White people, according to critical theories of race. Furthermore, language is not just a tool for communication; it also embodies cultural values, beliefs, and practices (Altarriba & Basnight-Brown, 2022). The institutional requirement for English is not neutral—it reflects and reinforces a Eurocentric cultural framework perpetuated through texts that shape service provision. Most literature on the lack of language-appropriate services frames the issue primarily as a language barrier (Angel et al., 2022; Næss & Moen, 2015; Vissenberg et al., 2018). However, applying critical theoretical lenses such as intersectionality and critical theories on race, and understanding the context of immigrants and racialized populations in Canada, my finding reveals a more complex interplay between language, immigration status, race, and living with dementia, facilitating the discussion beyond language inaccessibility alone to that of structural racism. As a dementia advocate who has been raising society’s awareness of the intersection of dementia and race for a long time, Granville, my advisor with lived experience, explained his perception of the invisibility of the intersection of race and dementia by relating the history of the development 157 of the dementia community and race in Canada. He noted that most people with lived experience who are active in the dementia community are White people; he suggests that while comfortable talking about their own discrimination as a person with dementia, most do not feel comfortable when the words “racism” or even “race” are mentioned because they are sensitive to being labelled “racist.” Literature discusses the conflation of race, ethnicity, and culture, including language (Carson Byrd, 2011; Park, 2005). Race is often assumed to be inherently linked to culture, reflecting a racial bias that essentializes these identities. As Susan stated, “All services [referring to self-support groups] in the Alzheimer’s Society are for Westerners [referring to White people]. They speak English.” Here, she automatically conflated English (culture/language) with Whiteness (race), an act of essentialization. This conflation carried hidden implications—Susan assumed the services were designed for White people, excluding racial minorities like herself. She seemed to accept the lack of language-appropriate services as she did not advocate for them. While Susan did not explicitly explain her reasoning, one possible interpretation of her acceptance is that, as a member of a racial minority, she might have internalized feelings of inferiority and undeserving of societal resources shaped by historical racism. Most literature on critical theories on race explores racial essentialization as a process imposed by racial majorities onto minorities (Delgado & Stefancic, 2017; Gutiérrez & Lechuga-Peña, 2022). My findings extend this discussion to the context of the use of dementia and aging services, where essentialization can also occur from the racialized minorities toward themselves and even the racial majorities. 158 In the texts that help shape community services for those with dementia, there is one exception where the intersection of race and dementia is recognized and directly addressed. This is in a 2020 national statement by the Alzheimer’s Society Canada (2020). This national statement is available on both national and provincial Alzheimer’s Society websites, and it focuses on addressing systemic racism in healthcare services to Black, Indigenous and People of Colour (BIPOC) living with dementia. It states: At the Alzheimer's Society of Canada, we work to change the lives of those living with dementia. We acknowledge that we have not done enough to combat the systemic oppression felt by Black Canadians, and how they, Indigenous Peoples, and other People of Colour connect with the health services in our country. (Alzheimer’s Society of Canada, 2020, p. 1) The statement relies upon US and UK statistics to demonstrate that BIPOC living with dementia in the US and UK are more negatively affected by dementia due to systemic racism in healthcare services. There are, however, no Canadian statistics. Rectifying this gap by conducting a national survey of BIPOC living with dementia and increasing the proportion of racialized people in their advisory group of people living with dementia is now one of Alzheimer’s Society’s aims. They reiterated this commitment more recently in a 2024 report, The Many Faces of Dementia in Canada (Alzheimer Society of Canada, 2024). Again, it mentions there is a lack of studies on dementia and race in a Canadian context. Using the literature review on dementia and race in the US and UK, and 2016 Census data on ethnic composition in Canada, it predicts the growth of racialized people living with dementia in the next 30 years. The Alzheimer Society of Canada’s commitment to addressing systemic racism in dementia care reflects the very inequities that participants in my study faced, particularly in accessing and using services. Its acknowledgement 159 of the predicted growth of racialized populations living with dementia, alongside the lack of Canadian research, underscores the timeliness of this study in examining the experiences of racialized people with dementia, focusing on Chinese communities—one of the largest racialized groups in Canada. 4.5.3 The Invisibility of Older Adults and People with Disabilities in Anti-Racist Strategy Texts Complimenting my lived experience advisor’s discussion of racism, two texts give further insight: The Canada Anti-Racism Strategy and the provincial level, BC Anti-Racism Strategy, the major anti-racism texts in Canada and BC. Neither of these is particularly effective in taking on this discussion. Notably, the strategies in the Canada Anti-Racism Strategy seem to pay more attention to younger age groups and rarely mention older adults or people living with disabilities, including dementia. For example, funding local, regional, and national programs that address systemic racism is the key component of the Canada Anti-Racism Strategy, accounting for one-third (12 pages) of the 36-page document.22 The document targets three program areas: “employment, justice, and social participation” (Government of Canada, 2019, p. 7). It does not identify a target age group for “social participation,” and for “employment,” it does not specify the target age group, but most people in the labour market are of working age. As for “justice,” the document clearly states the focus is on “youth” at risk. Justice: promoting interventions for youth [emphasis added] at risk, including encouraging positive exchange of views and co-creation of solutions between 22 The rest of the content is on foreword, context, principles, conclusion, and terminology. 160 communities, Indigenous Peoples and the criminal justice system. (Government of Canada, 2019, p. 12) This document fails to address the intersection of race with ageism and ableism. At the provincial level, the BC Provincial Anti-Racism Strategy similarly does not mention addressing racism among older adults or people with disabilities, but it does mention “children” and “youth,” for example, “[strategies to increase] children, youth, and family wellness in home and away from home” (Government of British Columbia, 2023, p. 16). In addition, the provincial strategy has a committee consisting of racialized people from different backgrounds to guide it. Of note, this committee does not seem to have any members who self-identify as older adults or people living with dementia or disability. They are either researchers or leaders in health and social care. The invisibility of older adults and people with disabilities may reflect the neoliberal discourse, which stresses the economy, seeing children and youth as the future labourers and working-aged people as labourers who will contribute to or are contributing to society. Therefore, racism against these age groups needs to be addressed, as not addressing it may have economic costs. For example, working-aged people are not able to find jobs that best fit their skills because of racism. In contrast, older adults are not seen as contributing, at least less so, through paid work. This is even more the case for older adults who are living with disabilities, especially those with dementia, who are readily dismissible because of presumed incapability. 4.5.4 Summary 161 In this section, through an analysis of aging and dementia service texts, the invisibility of race, or the inattention to the intersection of race with aging and dementia, is explicated and identified as reflecting a colour-blind approach that, according to critical race theories, is a form of racism. This colour blindness is influenced by the biomedical lens, which inherently disregards race (or treats it as a “factor”). The invisibility of race with aging and dementia textually shapes service by implicitly requiring English proficiency, an expectation that primarily benefits White individuals and marginalizes racialized individuals, many of whom are non-English speaking in a Canadian context. As a result, in a situation of austerity and scarce resources, participants were even more disadvantaged as they struggled to find language-appropriate services that address their unique needs as both Chinese and people living with dementia. Additionally, my analysis of anti-racism policy texts reveals that older adults and individuals with disabilities, including dementia, are largely excluded from strategies to address racism, reflecting ageism and ableism within neoliberalism. 4.6 Chapter Conclusion In this chapter, I presented the problematics experienced by participants, as well as the ruling relations that textually mediated them and the embedded oppression. The biomedical lens shapes professional practices through textual mediation, emphasizing physical health in service provision. This perspective clashes with participants' understanding of their needs as far more holistic. A biomedical lens which prioritizes professional knowledge textually organizes medical professionals to prioritize their knowledge, which helps explain why participants often felt that 162 their lived experiences were disregarded. These reinforce the dominance of the biomedical lens and the authority of medical professionals. Furthermore, Neoliberal discourse implicitly, and sometimes explicitly, prioritizes messages related to maintaining independence as a personal responsibility and dependence as a burden. Together, the consequences of these neoliberal messages are austerity policies in service provision, contributing to participants’ struggles in accessing and using support. A process associated with austerity-driven policies, responsibilization, shifts care responsibilities from the state to families. The expectation for families to provide care in texts becomes an implicit assumption of the professionals, shaping participants' experiences of having to rely on family members to fill the service gaps despite their own preferences. Using services is particularly challenging for Chinese individuals as a racialized group. The invisibility of race, or the inattention to the intersection of race with age and dementia, textually mediates services to have a hidden requirement for English language proficiency, creating barriers for racialized individuals in a Canadian context. Systemic racism is embedded in the service system, further disadvantaging racialized individuals in using services. In the upcoming Discussion section, I will present three main contributions of this study, and implications for practice, policy, theory, and research. 163 Chapter Five: Discussion Chinese people living with dementia, as racialized individuals, face challenges in accessing and using formal support services. Using IE as the methodological framework, I conducted interviews and analyzed relevant texts to explore not only these experiences, but also how they are textually shaped by ruling relations. In other words, these experiences are not just experiences, but experiences under specific ruling relations. This is important because this study does not only add to the limited body of research examining the lived experiences of racialized people living with dementia, but also moves beyond the narrow focus on individual experience to make visible how ruling relations embedded in the support system shape everyday realities: It draws attention to what is not working within existing policies and practices, and hence situate individual experience within broader societal and structural contexts. Drawing attention to structural racism and how these experiences are shaped by the intersections of race, age, and living with dementia highlights how accessing and using formal support services are particularly problematic for racialized people living with dementia. As noted by others (Hailstone et al., 2017; Mukadam, Cooper, Basit, et al., 2011), these contexts have received relatively little attention in existing literature, and there is an especially sparse body of research that is grounded in the standpoint of those living with dementia. To my knowledge, this study is among the first—if not the first—to apply IE to the study of access to and use of formal support services from the standpoint of racialized people living with dementia. Two studies, Brotman (2003) and Dalmer (2017) employed IE to explore services from the perspectives of racialized older adults without dementia or family carers of people living with dementia, but neither of these drew on the standpoint of people living with dementia. 164 This study makes three significant contributions that warrant further discussion: recognizing the dominance of the biomedical lens; unpacking the complexity of culture; and exposing the structural racism that grounds personal experiences and service delivery. Exposing structural racism is arguably the thesis’s most significant contribution among the three: As explained in the findings, while the dominance of the biomedical lens affects all individuals living with dementia, racialized individuals are particularly impacted due to the intersection of dementia, aging, and race. Moreover, racism is difficult to expose, as it is often obscured through its conflation with cultural difference. Understanding these contributions is important because they make visible structural issues that perpetrate oppression and discrimination and can be used to inform better dementia care for racialized people living with dementia. Drawing on these three contributions – which emerge from examining the underlying problematics, this chapter outlines implications for practice, policy development, theoretical frameworks, and research. I will begin by recognizing the dominance of the biomedical model because this provides a foundation for branching out to racism. 5.1 Recognizing the Dominance of the Biomedical Lens This study reveals the clear and persistent dominance of the biomedical lens in shaping the experiences of people living with dementia and exposes how this lens may be particularly problematic for Chinese – and other racialized people – living with dementia. The individual stories of the participants in this study underscore how the biomedical lens continues to shape their daily lives in powerful ways. For example, many described a feeling that professionals focused primarily and narrowly on their dementia experience as a physical health problem and emphasized pharmacological treatments. This finding on the importance of the biomedical lens 165 for underpinning lived experience is not unexpected: Others have similarly highlighted how this lens informs service use for people with dementia in ways that may be problematic (see, for example, Bartlett & O’Connor, 2010; Grenier et al., 2020; Powell, 2023, 2024). Over the past three decades, there has been a growing societal recognition of moving beyond a biomedical model toward a more holistic approach to healthcare. This shift is evident both in academic literature (Engel, 1977; Mead & Bower, 2000; Yuan, 2024) and in government documents outlining service principles (BC Ministry of Health, 2016, 2017b). Correspondingly, understandings of dementia have evolved—from an initial lack of recognition to the dominance of a biomedical model, and more recently, toward holistic and human rights-based perspectives (Bartlett & O’Connor, 2010). Despite growing recognition in academic literature and policy documents of the need to move beyond a biomedical model, it remains unclear how these shifts of understanding are reflected in the lived experiences of individuals without actually hearing from them. In this study, ground-level accounts reveal a stark disconnect: Supports and services remain shaped mainly by the dominance of the biomedical lens in practice. This gap between academic and policy ideals and practice raises a critical question about why the biomedical model persists despite long-standing recognition of the need to move beyond it, to understand the dementia experience more holistically (Bartlett & O’Connor, 2010; Kitwood, 1997). People’s stories led me to specific texts that revealed how these documents might help maintain this dominant biomedical lens. This finding is significant because it begins to uncover why the 166 biomedical model remains alive in practice, offering directions which could guide policy and practice changes in ways that may reshape experiences at the individual level. One explanation for the dominance of a biomedical lens is the physician-led structure of dementia care. Policy and practice guidelines across all levels of texts explicitly or implicitly position primary care physicians at the hub of care. The physician-led care structure and the biomedical model are found to sustain one another through a mutually reinforcing relationship, a dynamic maintained by what Foucault (1975, 1978) conceptualized as "biopower": Power and knowledge are intertwined, which is not only circulated but also governing and is perpetuated in the relationships at all levels of society (Foucault, 1978). Biopower is a form of power that operates through dominant discourses, which shape what counts as legitimate knowledge (Foucault, 1976, 1977, 1978). In the context of this study, the biomedical discourse has given power to biomedical knowledge, which is often presented as a form of professional knowledge, or "disciplinary knowledge" in Foucault's terms (Foucault, 1977). For example, the knowledge of biomedical and healthcare professionals is positioned as the “evidence” that informs aging and dementia services in policy and service documents. As a result, care structures have increasingly become physician-led, as physicians are viewed as the champions of biomedical knowledge. At the same time, physicians (are textually mediated to) refer to biomedical knowledge to determine people’s access to resources. For example, practice guidelines show that access to services, such as dementia screening and specialist referrals, is primarily determined by physicians’ professional knowledge. This, in turn, reinforces the power of the biomedical model as the central basis for 167 service provision. This marginalizes other forms of knowledge (Foucault, 1977), including the knowledge of people personally experiencing dementia, who expressed a preference for a more holistic care approach. The marginalization is particularly problematic for racialized individuals, whose voices are even more likely to be silenced because of stigma and discrimination. Importantly, not only does a physician-led care structure regulate access to “health” services, but in this study, physicians were also often the professionals responsible for referring “patients” to community resources (Doctors of BC & Ministry of Health, 2023). This is despite their lack of training and expertise in this area: For example, a review of the curriculum at the University of British Columbia (UBC) School of Medicine (2025), which is the primary medical school in British Columbia, shows no coursework or components dedicated to community resource coordination, highlighting a clear mismatch between training and practice expectations. The misalignment between physicians’ expertise and the responsibilities assigned to them has two key consequences. First, it reflects an inefficient use of human resources and intensifies pressures in a system already strained by shortages of physicians and other professionals in British Columbia (Li et al., 2023). Expecting physicians to coordinate community resources—tasks better suited to qualified professionals such as social workers—overlooks existing expertise. When other professionals are underutilized or excluded from roles aligned with their training, they may feel undervalued, contributing to workforce attrition (Leary et al., 2024). This turnover, in turn, further hinders the delivery of holistic care, which requires professionals from different expertise. 168 Second, assigning physicians responsibility for the social aspects of health contributes to the medicalization of social issues and reinforces the dominance of the biomedical lens. The rise of “social prescribing” — where physicians prescribe social interventions (Roland et al., 2020) —illustrates this trend . While this trend recognizes the importance that social dimensions can play in the experiences of health, rather than challenging the physician-led care structure, such initiatives may further entrench it by “medicalizing” social support. The role of other professionals, such as social workers—who are specifically trained in practices central to social prescribing (sic) – for example, connecting individuals to community and social support (White et al., 2022) — remains underrecognized in policy and practice documents. Further research is needed to explicate the benefits – and disadvantages – of medicalizing social support. For well over three decades, the importance of drawing on the expertise of an interdisciplinary team approach – ideally operationalized through a one-stop hub or clinic (so that people can access different services in a co-located space) – has long been advocated (Lee et al., 2014; Morgan et al., 2009). Such an approach draws on a broad range of expertise and addresses the complex dimensions of dementia care. This approach would ensure that people’s diverse health needs are met more appropriately and more holistically, and help to reduce the burden on physicians to deliver care beyond their areas of expertise. There was surprisingly little evidence in this study that this approach is actually being enacted. An exploration into this reveals that in Vancouver, there are approximately 136 primary care clinics (Vancouver Coastal Health, 2020) and 1,200 primary care physicians (Vancouver Divisions of Family Practice, 2025). Only 14 clinics integrate interdisciplinary teams (Pathways, 2025). This gap raises a critical question 169 about why, despite widespread recognition of its benefits, interdisciplinary care has yet to be widely adopted. One possible explanation lies in the historical development of healthcare, which has positioned physicians as the first point of contact and primary coordinators of a range of services, as illustrated in participants' stories and government documents (Vancouver Coastal Health, 2025). Current funding structures may also have contributed to the lack of adoption. Physician remuneration is still largely based on fee-for-service, which may incentivize short, direct patient encounters and inadvertently discourage referrals to other professionals, as suggested in the literature (Newton, 2023; Norris, 2023). Such funding models may hinder the delivery of holistic care. Apart from the physician-led care structure, neoliberalism offers another explanation for the dominance of the biomedical model. Neoliberalism and the biomedical model are deeply intertwined. Neoliberalism prioritizes economic growth, minimal state intervention, and reduced public spending. As reflected in policy and practice guidelines, neoliberal policies frequently invoke biomedical reasoning to justify restrictions and cost-cutting measures. Prior literature documents similar patterns: Grenier (2020) argues that the government increasingly uses the concept of “fragility” to ration the use of services. Being seen as physically and functionally “fragile enough” by professionals becomes a prerequisite for services. Older adults who are not perceived as being sufficiently frail are consequently denied care. In this way, neoliberalism and the biomedical model are mutually reinforcing: Neoliberal policies are legitimized by the 170 biomedical logic, while the biomedical model is continuously reinforced through its role in rationalizing neoliberal approaches during service delivery. The cut in services limits investment in a broader aspect of care, which hinders a holistic approach and reinforces the biomedical lens. While these cuts in services affect all people living with dementia and older adults, racialized individuals are disproportionately impacted, as they already face systemic barriers to accessing care—particularly those rooted in racism. (This will be developed in the following sections). One thing to note is that while the neoliberal policies intend to cut public spending, the consequences are often counterproductive. Existing literature shows that care approaches rooted in neoliberal principles tend to be reactive, often leading to higher rates of hospitalization and institutionalization — and ultimately incurring greater costs than models that prioritize prevention and investment in holistic care (Ågotnes et al., 2024). While neoliberal measures may reduce public spending in the short term, they are more costly in the long run (Abel et al., 2018). Although the economic impact of neoliberal policies is not the primary focus of this thesis, this paradox warrants further examination. 5.2 Unpacking the Complexity of Culture: Acknowledging Importance, Challenging Essentialization While many of the findings presented above could apply more generally to people living with dementia, this study examines how these ideas may be uniquely experienced as a result of culture – and how culture may be framed by racism. An important insight from the study is that it both 171 recognizes the importance of culture but also challenges the essentialization as it applies to Chinese people living with dementia. Acknowledging the salience of culture is essential, contributing to the growing recognition in the literature of the need to incorporate culture into our understanding of dementia care (Angel et al., 2022; Næss & Moen, 2015). One way this study deepened understanding of cultural relevance is through its development of a relational lens, often recognized as relevant to Chinese culture (Tsai, 2009). For example, a key finding of this study is that when discussing care arrangements to meet their needs, some participants preferred formal support services over family care, prioritizing the well-being of their families and fearing that they would burden them. This finding highlights the significance of relationality, where care decisions are guided by concern for others (Gilligan, 1993; O’Connor, 2010). Interestingly, these findings shed new light on competing issues under a relational lens. For example, filial piety – adult children’s responsibility to provide care for their older parents – is often drawn on as a recognition of relational caring (Chan et al., 2023; Chang & Schneider, 2010). Filial piety has been extensively written about in the literature and is recognized as a key concept in understanding Chinese family care for people living with dementia (Wang et al., 2023). However, participants in this study provided an alternative way of understanding relational care, one that, in some ways, challenges the essentialized understanding of filial piety. Specifically, despite the proliferation of literature emphasizing the importance of family in dementia care in Chinese culture (Wang et al., 2023), participants in this study were explicit in 172 their preference for formal support to avoid burdening their families. That is in tension with the expectation of their adult children's care responsibility in filial piety. Another example that offers an alternative understanding of relational care is transnational family care. Transnational family care illustrates a form of family care in which care is sustained through ongoing relationships among family members across borders—despite physical distance, often facilitated by air travel and remote communication (Baldassar, 2014; Kordasiewicz et al., 2018; Moré, 2022). For many racialized people living with dementia, including Chinese individuals, cultural and immigration status differences shape family dynamics in varied ways.23 As a result, the experience of family care may look pragmatically different from conventional family care, which is typically hands-on and in-person (Andruske & O’Connor, 2020; Brandhorst et al., 2020; Czapka & Sagbakken, 2020a). For instance, despite living physically far apart, Becky and her husband are closely connected to their family members living abroad. Due to the physical distance, these family members are unable to provide in-person care. However, they contribute in other ways. They support Becky remotely through information and communication technologies, primarily by providing information. This example contributes to the literature emphasizing the importance of incorporating a transnational lens in dementia family care (Andruske & O’Connor, 2020). While transnational care plays a role in these care experiences, limited research has examined how it unfolds in practices related to the care of older adult family members, especially those with dementia. Transnational care related to dementia has 23 While there are people of the racialized or Chinese communities who have lived in Canada for generations and are no longer immigrants, many Chinese are immigrants and have connections with family members in their place of origin. As suggested earlier, 60% of racialized people are immigrants (Statistics Canada, 2022). Also, as of 2021, 71.6% of Chinese individuals in Canada were first-generation immigrants, born outside the country. 24.9% were second-generation immigrants, born in Canada to at least one parent who had immigrated to Canada (Statistics Canada, 2023d). 173 not been well explored, with much of the existing literature focused narrowly on migrant workers (Bruquetas-Callejo, 2020; Schilliger et al., 2023) and seldom extending beyond this context. This study contributes to broadening that scope, but further research is needed. The findings also contribute to the dementia literature on family care and service use among Chinese by extending the tendency to focus primarily on family caregivers (Chang & Schneider, 2010; Choi et al., 2024), by centring the perspectives of the people living with dementia. In reference to the argument above regarding the relational lens, their perspectives challenge a more simplistic understanding of relational care as being solely grounded in filial piety and hands-on, in-person care. Because my study spoke to those with lived experience, it began to make this complexity visible. It becomes apparent how the relational lens can be applied by people living with dementia in interesting ways, particularly in the context of filial piety and transnational family care. The nuances and sophistication of a relational lens can be hidden without the important contributions of those living with dementia. The importance of developing a deeper understanding grounded in a relational lens was particularly apparent when listening to the stories of the female participants, where the importance they placed on avoiding burdening their families was even more evident. This raises questions about how care is gendered relationally from the perspective of the person receiving care within the Chinese family. Little research has explored this to date. This may be because women, having more often served as caregivers, as suggested by scholars such as Oakley (2018) and Hooyman (2025), are considered more aware of the emotional and physical toll of care work and thus perhaps more sensitive to the burden their needs may impose on others. This finding 174 contributes theoretically by advancing the concept of relationality in the context of Chinese dementia family care, illustrating the intersection of relational culture and gender. Although based on a small sample size, the insights gained from these women participants raise important questions for further research regarding how gender shapes the care preferences of a Chinese person living with dementia in the context of a relational lens. Significantly, in developing a more culturally relevant lens for understanding the experience of dementia as relational, this study also challenges the essentialization of culture. Despite the growing acknowledgement of the importance of recognizing culture in dementia care, much of the literature approaches this through the framework of cultural competency (Saadi et al., 2017; Vissenberg et al., 2018). This lens implicitly assumes that culture can be learned and implies homogeneity within a cultural group. Countering this simplistic understanding of culture, participants’ narratives in this study demonstrate the diverse and complex ways in which cultural values are interpreted and enacted. As suggested, my study counters this by showing that some participants have a different preference for care. This contributes to the emerging literature that questions fixed family cultural norms (Antelius & Plejert, 2016; Casado et al., 2018; Kiwi et al., 2018), reflects shifting attitudes toward family care and services (Phillips & Cheng, 2012; Yeh et al., 2013), and reveals the complexity and heterogeneity of experiences of people living with dementia even within the same cultural group (Hulko, 2009; O’Connor et al., 2007). By unsettling the essentialization of culture, these findings carry important implications for practice. They underscore the need for a critical discussion on how professionals (and researchers) can acknowledge culture without reducing it to generalized or static traits, a 175 limitation inherent in the cultural competency framework (Saadi et al., 2017; Vissenberg et al., 2018) and support a shift toward alternative practice approaches, such as cultural humility. Fisher-Borne et al. (2015) and Danso (2018) summarized several critiques of cultural competency. First, as suggested, it views culture as a form of knowledge that can be learned through training or education, which explains why it often leads to essentialization. Second, cultural competency approaches race by conflating it with culture, which is considered more manageable to discuss and address openly; racism is more contentious, systemic, and hidden, whereas culture is seen as relatively neutral. (This point will be further discussed later in this chapter). Third, not unexpectedly given its tendency to conflate race with culture, it overlooks the racism and other systemic inequalities faced by racialized groups. Rather than just being ineffective in supporting racialized people, cultural competency can be extremely harmful by inadvertently reinforcing systemic racism, because service providers believe that they have “learned” the culture of racialized people and stop examining broader systemic issues further critically. I am not alone in recognizing some of the limitations of a cultural competency approach, as scholars have discussed the importance of developing other practice models, such as cultural humility (Danso, 2018; Fisher-Borne et al., 2015). Cultural humility recognizes that culture is complex, dynamic, and diverse—even within the same cultural group—making it impossible to fully "learn" a culture (Danso, 2018; Fisher-Borne et al., 2015). Instead, it calls on professionals to remain open to how clients understand and express their own culture, while also recognizing that professionals’ own cultural backgrounds shape their practice. Crucially, cultural humility 176 addresses power imbalances between clients and professionals, as well as between clients and broader institutional and societal structures (Fisher-Borne et al., 2015). Given their position of authority, professionals may be unaware of their own cultural biases and inherent power (Danso, 2018). As such, cultural humility necessitates ongoing critical self-reflection and a commitment to confronting power dynamics at all levels, including interpersonal, institutional, and systemic. This study supports the importance of this broader approach to understanding and responding to culture. For example, following a cultural humility approach, when working with Chinese individuals living with dementia, professionals avoid assuming a preference for family care based solely on cultural background. Instead, they actively listen to clients' expressed preferences on care and continually reflect on their own cultural biases. Furthermore, professionals advocate for adequate and accessible formal support services, as meaningful choice in care is only possible when sufficient resources are available—a point reinforced by the study’s findings: Even if participants preferred formal support services, their families had to provide care for them because the services were insufficient. 5.3 Exposing Structural Racism Perhaps one of the most significant contributions of this study is exposing structural racism. As discussed above, the two previously identified contributions – recognizing the dominance of the biomedical lens and unpacking the complexity of culture – are both intricately connected to race and structural racism. Specifically, although the dominance of the biomedical lens impacts all people living with dementia, racialized individuals are particularly impacted due to their 177 intersecting social locations of dementia, age, and race. Also, culture is frequently conflated with race, which obscures structural racism. Indeed, the conflation of culture and race is recognized as a critical gap in the literature on racialized people and healthcare (Ahlberg et al., 2019). This study begins to explicitly identify structural racism in dementia service use. Particularly, it highlights that its operation is through the invisibility of race and the persistence of colour-blind approaches in dementia-related texts, such as the implicit expectation of English proficiency, within a Canadian context where immigrants, cultural and language minorities, and racialized populations significantly overlap. This contribution is significant because it provides concrete guidance for practice and policy. Given that structural racism operates through mechanisms of invisibility (Kolivoski et al., 2014), explicitly naming it in policy and practice documents across different levels of government and healthcare settings is crucial, as its persistence depends, in part, on remaining unseen. Consistent with other literature (see, for example, Hailstone et al., 2017; Mukadam, Cooper, & Livingston, 2011), this study demonstrates how race may be obscured through sanitized terms like “ethnicity” and “culture” in government documents. For example, this is the language used in the texts organizing practice (BC Ministry of Healthy Living and Sport, 2013; Government of Canada, 2021). There is no mention of “race” per se in the main documents: Rather, in line with other literature (Saadi et al., 2017; Vissenberg et al., 2018), limited use of services among racialized people living with dementia is framed through a cultural competency lens which suggests that the issue is cultural knowledge rather than structural racism. Failing to name race dilutes the structural nature of racism into issues of cultural diversity (Fisher-Borne et al., 2015). 178 Naming race and racism foregrounds questions of power and structural oppression, and recognizes that it is racism, not cultural diversity, that shapes disparities in service use. This reframe makes explicit that the disparities are structurally imposed, rather than assuming them as individual cultural differences. Acknowledging this should prompt structural change rather than placing the responsibility for the problem on racialized individuals, which is the approach most commonly seen in the literature (Casado et al., 2018; Nielsen et al., 2020). Where possible, explicitly naming Whiteness is also crucial, according to critical theories on race (Harris, 1993). As the findings of this study show, dementia services favour White people, for example, through implicit expectations of English proficiency, and the underlying promotion of Eurocentric values, such as independence as a personal responsibility. Exposing Whiteness makes its influence visible and opens space to challenge its dominance in dementia care. One reason for the invisibility of race, as suggested by my advisor with lived experience, is the absence of voices from racialized people living with dementia in dementia policy and service development. As shown in the findings, the voices of people living with dementia are already limited in policy and practice documents. For example, the BC Dementia Action Plan (BC Ministry of Health, 2012), the BC Dementia Care Guide (BC Ministry of Health, 2016), and the Canada Dementia Strategy Act (Government of Canada, 2021) all suggest the involvement of the voices of people with lived experience. However, it is unclear if they were truly involved, how they were involved, and to what extent they were involved. Furthermore, even if the voices of people with lived experiences were included, there is no way to understand how diversity – including cultural and racial diversity – has been integrated. The literature has spoken eloquently 179 about the importance of including the voices of people with lived experience; However, it also demonstrates that when lived experiences of dementia are included, they are often dominated by White individuals (Bartlett & O’Connor, 2007; Hulko, 2009; O’Connor et al., 2010, 2022; Wong et al., 2024). Here is also a matter of language, as most racialized people are language minorities in a Canadian context, and English, the dominant language in Canada, is privileged as the voice to be heard. Hence, this study provides valuable insights from the perspective of one group of racialized people living with dementia – Chinese – into the importance of including the voices of individuals with intersecting identities of race and dementia when developing policy and practice. The paragraphs above in this section discuss how race is largely absent from dementia and aging policies. Importantly, this study draws attention to another glaring gap: disability (especially dementia) and aging are also notably missing from anti-racism strategies, such as the Canada Anti-Racism Strategy (Government of Canada, 2019) and the BC Anti-Racism Strategy (Government of British Columbia, 2023). These two policy domains — one centred on dementia and aging and the other on race — have developed largely in parallel, with little overlap or integration. A significant contribution of this study is its illumination of this critical gap: It brings attention to how the domains of dementia and anti-racism have not been in conversation, despite the necessity of each perspective informing the other, as shown in participants’ experiences. By demonstrating the importance of integrating them, this study highlights the need for an intersectional approach for exploring the experiences of people living with dementia and their access to care and services. Furthermore, this study begins to go beyond the focus on the intersection of dementia and race by beginning to reveal how experiences of dementia differ 180 across other social locations, such as gender and socioeconomic status – suggesting that this is an important area for future research. 5.4 Moving Forward – Next Steps Going forward, the findings of this study have implications for practice, policy development, theoretical frameworks, and future research. While recognizing the interactional nature of these, each will be highlighted in the following section: 5.4.1 Practice Implications In relation to practice, considering the physician-led structure and misalignment of expertise in dementia care, other professions may wish to focus more intentionally on identifying and promoting the areas where their expertise is distinct and valuable. It can be helpful to articulate and communicate the skills and perspectives affiliated with different professional backgrounds, and to question practices that misallocate responsibilities, especially when resources are limited. Recognizing the skill and knowledge that are required for doing effective care coordination and management would be an important first step. This has particular importance for Social Work. Different disciplines can make a significant contribution to promoting a more holistic approach to healthcare. For example, many participants in this study emphasized the importance of addressing mental health and social well-being; these 181 are areas that fall squarely within the scope of social work, commonly taught within schools of social work. Another important contribution social work can make is bringing in a structural perspective – this means considering individual experiences within the broader societal contexts. While existing research has a tendency to individualize the complexities of accessing dementia and aging services, challenges to accessing dementia and aging services are structural, as demonstrated in this study. A structural perspective invites professionals to look beyond individual circumstances to consider the systemic oppression that shapes social problems (Mullaly & Dupre, 2018). It has the benefit of shifting blame from the individual or family and beginning to recognize how policies and practices are problematic. In practice, this may involve supporting individuals while also working toward changes in the structures that sustain inequality. This structural perspective aligns well with IE. IE is not only a research method but can also serve as a practical tool for structural analysis and intervention (Smith, 2006). It is particularly effective for uncovering how institutional processes shape people’s everyday experiences, as demonstrated in this study. From a structural perspective, one reason structural racism persists is the lack of representation of racialized voices in dementia policy and service development. Some racialized people living with dementia may face intersecting barriers, such as cognitive and language challenges, linked to their social locations, which can hinder meaningful participation, as shown in the stories of some participants. These barriers may be addressed through inclusive practices. Some literature brings in ideas about inclusive practices, such as adjusting the pace of discussions and providing 182 interpretation support where needed (Hung et al., 2024; Policy Lab, 2024). Social workers are well-positioned to facilitate these inclusive practices, given the profession’s foundational emphasis on diversity and inclusion and the focus of related education and training (Canadian Association of Social Workers, 2024). 5.4.2 Policy Implications In terms of policy development, policymakers need to examine more closely how policies may inadvertently support biomedicalization. For example, this could include revisiting physician fee structures. A potential obstacle to developing interdisciplinary one-stop hubs or clinics to promote holistic health is the prevailing fee-for-service model for physician payment. Exploring alternative funding approaches will require targeted policy research and action to redesign existing structures. One such alternative that requires further examination is “capitation”, whereby physicians receive a set payment per patient, potentially encouraging more holistic, team-based care without diminishing physicians’ earnings (Canadian Medical Association, 2025). As seen in findings, a barrier to a holistic approach to dementia care is a narrow and unclear definition of health in dementia policy documents. A more precise, more comprehensive definition of holistic health would provide valuable guidance. For instance, the World Health Organization's (2023) Constitution serves as a good reference, which describes health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” Given the rhetoric surrounding the development of a comprehensive dementia strategy, it would be reasonable for such a strategy to explicitly adopt and promote a broader 183 definition of dementia care—one shaped through input from, and applicable across, a range of settings, including healthcare, social care, and other support contexts, while allowing for contextual adjustments to reflect the specific needs and circumstances of each setting. Equally important is the inclusion of the voices of people living with dementia in shaping what holistic care means in practice. For instance, as this study demonstrates, participants stressed that dementia affects not only physical health but also mental, social, and spiritual well-being and that not infrequently, these were the aspects they wished to focus on, not the dementia per se. As noted, the neoliberal policies are shaped by viewing independence as personal responsibility and dependence on services as a burden. To challenge these neoliberal policy approaches, a policy shift is needed away from the tendency to create an “independence vs dependence” dichotomy toward a more inclusive and realistic concept of interdependence (Engster, 2014; Hankivsky, 2004; Pritchard-Jones, 2017). Interdependence challenges the binary between independence (good) and dependence (bad), recognizing that all people rely on one another across life stages and circumstances. Embracing interdependence fosters reciprocity and reframes aging and dementia care as shared societal obligations, rather than individual responsibilities or burdens. This shift prompts policymakers, professionals, and society to critically reassess and move beyond neoliberal approaches. One more gap in dementia services and literature is the emphasis on cultural competency, as it risks essentializing culture and overlooking structural racism. There is a need to shift towards an alternative practice approach: cultural humility. This highlights the problematic nature of the use of the language of cultural competency – for example, in the reviewed documents (e.g., Healthy 184 Living Framework) – which continues to perpetuate a static understanding of culture as a possession. Therefore, a recommendation would be that these documents begin discussing cultural humility, rather than cultural competency, in service provision and staff training. 5.4.3 Theoretical Contributions and Implications Theoretically, as noted in the literature, there remains a significant gap in understanding the diverse lived experiences of people with dementia, particularly racialized individuals, and the power dynamics within these experiences. I adopted critical theories on race and intersectionality as the guiding theoretical frameworks for this study, as they have the strengths in addressing these gaps. Through engaging with these lenses, the main insight I gained is that they are not only effective in addressing these gaps but also instrumental in guiding the analysis to a deeper, more nuanced level. Despite their relevance, these frameworks remain underutilized in dementia research. This study contributes an example for future dementia research by illustrating how the tenets of critical theories on race and intersectionality can illuminate the complex experiences of racialized individuals living with dementia. In doing so, it advances both the scholarship on dementia and the application of these critical theoretical approaches. For example, through applying critical theories on race, my finding reveals that a lack of language-appropriate services is indeed more than a language issue but structural racism in the context of Canada, where most language minorities are racialized, especially when culture often conflates with race. Another example is that the dominance of the biomedical lens and neoliberalism limits the access of services of people living with dementia. By referring to 185 intersectionality, my study reveals the complex intersection of dementia/age, and other social locations, including race, gender, and socio-economic status, showing how racialized people, women, and people from lower socio-economic status can be more affected. Similarly, I adopted IE for its theoretical and methodological strength to reveal structural forces and oppressions – a gap in the current literature on access to and use of services among racialized people living with dementia – and for its alignment with critical theories that centre power and people’s perspectives. As noted earlier in this chapter, this study is among the first to demonstrate how IE can uncover deeply embedded inequities in dementia and aging services from the standpoint of racialized people with dementia, which contributes to an example for future dementia and IE research. For instance, through IE’s focus on people’s standpoint, my analysis highlights the preference of some participants for formal services over family care—challenging the common assumption that family care is preferred—while also showing how inadequate service provision leaves these preferences unmet. By tracing such experiences to relevant texts, the study reveals how family care is textually constructed as an expectation. Without IE, this deeply embedded expectation could hardly be revealed. 5.4.4 Research Implications As outlined in Chapter Two, a key strength of this study is its focus on the standpoint of people living with dementia, and I deliberately chose not to interview family or professionals. However, I am aware that their perspectives might have offered additional insights. Future research may consider exploring these perspectives. Interviewing family and professionals may offer 186 additional insights on how others supporting the person with dementia interpret and enforce texts differently (Smith, 2006). This variation in interpretation could have influenced the enactment of policies or practices. In the future, adding the standpoint of family and professionals could extend understanding, perhaps highlighting some of the disparity between intention and the lived experiences of those with dementia. Similarly, the stories of people with lived experience raised questions about the concepts of relationality and filial piety. Interviewing families alongside people living with dementia may provide further insights into how these ideas play out in a family relationship. For example, this study begins to hint at the complexity of understanding “burden” from a relational perspective, highlighting a potential conflict between choice cultural norms and views where: The family member living with dementia may prefer services over family care as she does not want to burden her family but their family member may prefer to provide care rather than using services, as this aligns better with the cultural norm. These differences may lead to potential tensions within the family, which may influence care decisions and service utilization. Previous literature focuses on the perspective of the family member who provides care (Wang et al., 2023). Even if it looks at the family member and the person living with dementia as a dyad, it does not talk to the person. Instead, it focuses on the physical and cognitive conditions of the person and sees how they affect the caregiving stress of the family member (Hallinan et al., 2024). This study makes a valuable contribution by foregrounding the perspective of individuals living with dementia. Future studies may aim to understand the views of both family members 187 and the person, or even the views of the whole family, involving different family members and the person, on their perspectives of care. Drawing on an intersectional approach to future research is particularly needed. As previously noted, this study begins to hint at the relevance of a more intersectional understanding – one that incorporates, for example, race, gender, and abilities – but further research is needed to continue unpacking this understanding. Collecting only gender and age for participants’ demographic data, I recognize the shortcomings in understanding participants' other social locations and how integrating them might lend additional insights. One of these social locations is socio-economic status. As a Chinese, I felt that directly asking people about their socio-economic status would be culturally inappropriate and could potentially undermine the participants' trust in me. However, the findings indicate that neoliberal policy approaches textually shape participants' experiences, suggesting that understanding socio-economic status could be a valuable social location for further exploration. Some insight might be inferred based on the contextual information shared during interviews. For instance, given that Sam and his wife lived in a rented basement and relied solely on his public pension and savings, I deduced that he likely had a lower socio-economic status compared to some of the other participants and suspected that the neoliberal policy approach may have had a disproportionately greater impact on him. Future research on Chinese people living with dementia's use of services may benefit from exploring socio-economic positioning. Collecting socio-economic status data indirectly, such as asking about participants’ housing situations, may address the cultural sensitivity surrounding direct inquiries about this information. Individuals who own their homes are likely in a better socio-economic status than those who rent or live in subsidized housing. 188 Further research could also usefully be expanded to consider geographical diversity. This study focuses on Vancouver, an urban setting with a relatively larger Chinese population and greater availability of services compared to rural and remote areas (Statistics Canada, 2023a). As a result, the findings may not fully capture the experiences of Chinese people living with dementia in less densely populated regions, where both the presence of a Chinese community and service resources are significantly more limited. The discourses and notions that shape their experiences of using services may differ from those identified in this study. Even if they are similar, they may function and thus influence Chinese people living with dementia differently. Chinese people with dementia living in these areas may experience additional or unique problematics, such as fewer opportunities to engage with resources in Chinese and longer travel distances to use services (Biswas et al., 2022; Söderman & Rosendahl, 2016). Increasing the geographical diversity of participants could provide valuable insights into the disparities in service use between Chinese people living in urban and rural, or remote areas. 5.5 Chapter Conclusion In conclusion, this study has contributed to understanding the experiences of Chinese people living with dementia in their use of formal support services. Using IE, a critical research methodology, this study moved beyond individual experience and situated these experiences within broader structural contexts that have previously received limited attention in the literature. The study has three key aspects of contributions that warrant further discussion. 189 First, it identifies the dominance of the biomedical lens in dementia care and questions why holistic care remains largely unrealized. Second, it unpacks the complexity of culture, acknowledging its importance while challenging the tendency to essentialize it in understanding the lived experiences of Chinese people with dementia. Third, and perhaps most importantly, the study exposes structural racism in dementia care, operating through the conflation of culture and the invisibility of race in policy and practice documents. The presence of structural racism also highlights the importance of understanding the experience from the perspective of racialized people, Chinese in this study, living with dementia. Moving ahead, the findings carry implications across various domains, including practice, policy, theory, and research. 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Interview Guide Note that this was a conversation-style interview, in which participants were invited to share what they felt was important about their experiences living with dementia and using formal support services. These questions were only reminders to the researcher to ask if participants did not bring up spontaneously. • Can you tell me a bit yourself what might be important for me to know? • As you know, I’m talking to people with dementia and memory loss, can you tell me about your journey with dementia or memory loss? • How might your experiences be different because of your Chinese background? • During your journey with dementia or memory loss, have you tried to use formal support services? Can you tell me more about this? • What worked for you? • I assume things did not work perfectly. What worked less well for you? • Can you tell me an example? • What would make the use of formal support services better? o What advice/words of wisdom would you offer to people with Chinese background in similar situations like you? • Anything else I should know? 228 Appendix 2. Consent Form An Institutional Ethnography Informed Study of Access, Use, and Negotiation of Formal Support: Understanding from the Standpoint of Chinese People Living with Dementia Consent Form 1. Who is conducting the study? Principal Investigator: Deborah O’Connor, PhD, RSW University of British Columbia School of Social Work [phone number] Co-Investigator/Ph.D. candidate: Karen Wong, MSW, RSW University of British Columbia School of Social Work [phone number] 2. What is the purpose of the study? We want to learn more about the formal support service systems and the challenges of accessing, using, and negotiating the systems of Chinese people living with dementia. You are being invited to participate in this study because of your personal experience related to this topic. This study is being conducted as part of the requirements for the Ph.D. degree of Co-Investigator/Ph.D. candidate Karen Wong. 3. What will you do if you agree to take part in this research? You would meet with the Co-Investigator/Ph.D. candidate Karen Wong for a conversation about your everyday experiences living with dementia and 229 accessing, using, and negotiating formal support services. The interview would likely last about an hour and would take place in a private office, another location of your choice, or over Zoom. This interview would be audio recorded and transcribed. If you are agreeable, there might be a follow-up interview. 4. What will happen with this information? The investigators will review the information gathered from the interview to help them understand how the formal support service systems work. Data in hard copy will be stored in a locked filing cabinet at UBC School of Social Work. Electronic data will be stored on UBC OneDrive, which is encrypted and password-protected. The Principal Investigator will remain responsible for the data. Research data will be retained for a minimum of 5 years after the date of publication. After that, data in hard copy will be shredded and electronic data will be demagnetized. In order to ensure that you are able to speak with confidentiality and not be identified, all identifying information will be removed from the data. 5. How will the results of the study be shared? The results of this study will be used towards the thesis of the PhD degree of Co-Investigator/PhD candidate Karen Wong. They will also be shared widely through written reports and presentations for academics, healthcare providers, students, and the public. 6. Is there any way this study could be bad for you? We do not think that participating in this study could harm you or be bad for you. However, it is possible that sharing experiences of accessing, using, and negotiating formal support services could be distressing for you. If you have 230 any concerns, please let the Investigators know. You may withdraw from the interview anytime if you wish. 7. Will being in this study help you? You will likely not benefit directly from this study. However, by taking part in this research, you will have the chance to contribute to new knowledge and improve the formal support service systems for other Chinese people living with dementia. 8. How will your identity be protected? Unless you request otherwise, your name will not be associated with the information that comes from this study. All the study materials will refer to you by a pseudonym and will be kept in a locked filing cabinet or on an encrypted password-protected One Drive. Information that discloses your identity will be kept separately from transcripts from interviews and will not be released without your consent unless required by law. If you wish to be identified by your real name, you may inform the study Investigators. Note: If you choose to do the interview using zoom, you can log in using only a nickname or a substitute name or research code given ahead of time by the researcher, you can turn off your camera, and you can mute your microphone (when it is not needed). 9. Who can you contact if you have questions about the study? If you have any questions or concerns about what we are asking of you, please contact the Co-Investigator/Ph.D. candidate Karen Wong, email: [email], phone: [phone number]. You can also contact the Principal Investigator and Karen’s supervisor, Professor Deborah O’Connor. 231 10. Who can you contact if you have complaints or concerns about the study? If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the Research Participant Complaint Line in the UBC Office of Research Ethics at 604-822-8598 or if long distance e-mail RSIL@ors.ubc.ca or call toll free 1-877-822-8598. 11. PARTICIPANT CONSENT AND SIGNATURE PAGE Taking part in this study is entirely up to you. You have the right to refuse to participate in this study. If you decide to take part, you may choose to pull out of the study at any time without giving a reason and without any negative impact. • Your signature below indicates that you have received a copy of this consent form for your own records. • Your signature indicates that you consent to participate in this study. Participant Signature Date ________________________________ Printed Name of the Participant (signing above) 232 Appendix 3. Recruitment Poster Conversations with Chinese People Living with Dementia on Experiences on Accessing, Using, and Negotiating Formal Support Services Are you someone who: • Self-identifies as Chinese, • Lives with dementia or memory decline, • Has experience trying to access and/or use formal support services? If so, and you speak Cantonese, Mandarin, or English, I would like to talk with you! My name is Karen Wong, and I am a registered social worker and a Ph.D. candidate carrying out research to understand the experiences of Chinese people living with dementia accessing formal support services. The project is a part of my thesis work under the supervision of Professor Deborah O’Connor, the principal investigator of the study. The conversations will be conducted in Cantonese, Mandarin, or English by me. They will be informal and flexible. To learn more, please contact me, Karen Wong, via email at phone at [phone number], or email at [email].
Thesis/Dissertation
eng
Social Work
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
O'Connor, Deborah
Exploring the use of formal support services by Chinese people living with dementia : an institutional ethnography
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