Consent and Inclusion of People Living with Dementia (PLWD) in Research: Establishing a Canadian Agenda for Inclusive Rights-Based Practices.

BACKGROUND: People living with dementia (PLWD) may want to participate in research, but the guidelines and processes enacted across various contexts may prohibit this from happening. OBJECTIVE: Understanding the experiences of people with lived experiences of dementia requires meaningful inclusion in research, as is consistent with rights-based perspectives. Currently, the inclusion of PLWD in Canadian research is complex, and guidelines and conceptual frameworks have not been fully developed. METHODS: This research note outlines a three-year proof-of-concept grant on the inclusion and consent of PLWD in research. FINDINGS: It presents a brief report on some of the contradictions and challenges that exist in legislation, research guidelines, and research practices and raises a series of questions as part of an agenda on rights and inclusion of PLWD in research. DISCUSSION: It suggests conceptual, legal, and policy issues that need to be addressed and invites Canadian researchers to re-envision research practices and to advocate for law and policy reform that enables dementia research to align and respect the rights and personhood of PLWD.

Strategies to Mitigate Age-Related Bias in Machine Learning: Scoping Review.

BACKGROUND: Research suggests that digital ageism, that is, age-related bias, is present in the development and deployment of machine learning (ML) models. Despite the recognition of the importance of this problem, there is a lack of research that specifically examines the strategies used to mitigate age-related bias in ML models and the effectiveness of these strategies. OBJECTIVE: To address this gap, we conducted a scoping review of mitigation strategies to reduce age-related bias in ML. METHODS: We followed a scoping review methodology framework developed by Arksey and O'Malley. The search was developed in conjunction with an information specialist and conducted in 6 electronic databases (IEEE Xplore, Scopus, Web of Science, CINAHL, EMBASE, and the ACM digital library), as well as 2 additional gray literature databases (OpenGrey and Grey Literature Report). RESULTS: We identified 8 publications that attempted to mitigate age-related bias in ML approaches. Age-related bias was introduced primarily due to a lack of representation of older adults in the data. Efforts to mitigate bias were categorized into one of three approaches: (1) creating a more balanced data set, (2) augmenting and supplementing their data, and (3) modifying the algorithm directly to achieve a more balanced result. CONCLUSIONS: Identifying and mitigating related biases in ML models is critical to fostering fairness, equity, inclusion, and social benefits. Our analysis underscores the ongoing need for rigorous research and the development of effective mitigation approaches to address digital ageism, ensuring that ML systems are used in a way that upholds the interests of all individuals. TRIAL REGISTRATION: Open Science Framework AMG5P; https://osf.io/amg5p.

The qualitative embedded case study method: Exploring and refining gerontological concepts via qualitative research with older people.

This article argues that a tailored version of the qualitative embedded case study method can be used to build strong conceptual and inclusive insights from qualitative research with older people, and, in doing so, advance theoretical scholarship in social and critical gerontology. Gerontology has often been described as "data-rich and theory-poor" (Birren & Bengtson, 1988). It is a field which draws heavily on post-positivist traditions of quantitative research and notions of prediction, generalization, and statistical significance. While critical qualitative approaches have gained ground through interdisciplinary scholarship in the social sciences and humanities, few attempts have been made to articulate the relationship between research questions designed to understand older people's experiences and concept- or theory-building in gerontology. This piece makes a case for engaging with the theoretical/methodological interface by drawing on an evolving approach entitled the qualitative embedded case study, as it was used in three qualitative studies on the concepts of frailty, (im)mobility, and precarity. It suggests this is an evolving approach with the potential to develop conceptually sound, meaningful research from older people's experiences, including diverse, underrepresented, and marginalized groups, and to draw on these insights to direct change.

Ageism and Artificial Intelligence: Protocol for a Scoping Review.

BACKGROUND: Artificial intelligence (AI) has emerged as a major driver of technological development in the 21st century, yet little attention has been paid to algorithmic biases toward older adults. OBJECTIVE: This paper documents the search strategy and process for a scoping review exploring how age-related bias is encoded or amplified in AI systems as well as the corresponding legal and ethical implications. METHODS: The scoping review follows a 6-stage methodology framework developed by Arksey and O'Malley. The search strategy has been established in 6 databases. We will investigate the legal implications of ageism in AI by searching grey literature databases, targeted websites, and popular search engines and using an iterative search strategy. Studies meet the inclusion criteria if they are in English, peer-reviewed, available electronically in full text, and meet one of the following two additional criteria: (1) include "bias" related to AI in any application (eg, facial recognition) and (2) discuss bias related to the concept of old age or ageism. At least two reviewers will independently conduct the title, abstract, and full-text screening. Search results will be reported using the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) reporting guideline. We will chart data on a structured form and conduct a thematic analysis to highlight the societal, legal, and ethical implications reported in the literature. RESULTS: The database searches resulted in 7595 records when the searches were piloted in November 2021. The scoping review will be completed by December 2022. CONCLUSIONS: The findings will provide interdisciplinary insights into the extent of age-related bias in AI systems. The results will contribute foundational knowledge that can encourage multisectoral cooperation to ensure that AI is developed and deployed in a manner consistent with ethical values and human rights legislation as it relates to an older and aging population. We will publish the review findings in peer-reviewed journals and disseminate the key results with stakeholders via workshops and webinars. TRIAL REGISTRATION: OSF Registries AMG5P; https://osf.io/amg5p. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/33211.

Balancing Flexibility and Administrative Burden: Experiences of Family Managers Using Directly Funded Home Care in Manitoba, Canada.

Directly funded (DF) home care provides funding to home care recipients to coordinate their own care and supports, and is available across all Canadian provinces. Current research on DF home care focuses on the experiences of adults with disabilities self-directing their own care, but less is known about the experiences of family members managing services for adults 55 years of age and older. This article presents findings from a qualitative analysis of 24 semi-structured interviews with older adults and caregivers using the DF program in Manitoba, Canada, focusing on family manager experiences. We identify three themes in the interview data: (1) DF home care enhances choice and flexibility for older people and their caregivers, (2) choice and flexibility reduce caregiver strain, and (3) agency services reduce administrative burden. We discuss the importance of care relationships and the role of family managers. We recommend that traditional home care systems learn from DF, and that increased administrative support would reduce caregiver strain.

Development of GERAS DANcing for Cognition and Exercise (DANCE): a feasibility study.

BACKGROUND: Dance is a mind-body activity of purposeful rhythmic movement to music. There is growing interest in using dance as a form of cognitive and physical rehabilitation. This manuscript describes the development of GERAS DANcing for Cognition and Exercise (DANCE) and evaluates its feasibility in older adults with cognitive and mobility impairments. METHODS: The progressive dance curricula were delivered for 15 weeks (1-h class; twice weekly). Participants were eligible if they were community-dwelling older adults aged 60+ with early cognitive or mobility impairment able to follow three-step commands and move independently. Feasibility outcomes included recruitment/retention, adherence, participant satisfaction, safety, and adverse events. RESULTS: Twenty-five older adults (mean (standard deviation [SD]) age = 77.55 (6.10) years, range 68-90 years) with early cognitive (Montreal Cognitive Assessment score (SD) = 21.77 (4.05)) and mobility (92% were pre-frail/frail as indicated on the Fried Frailty Phenotype) impairments were recruited from a geriatric out-patient clinic or within the community. A total of 20/25 (80%) participants completed the study. Average class attendance was 72%, and self-reported homework adherence "most-days / every day" was 89%. A stepwise progression in the dance curricula was observed with increases in motor complexity and balance demands, and 95% of participants rated the program as a "just-right" challenge. Ninety percent of participants rated GERAS DANCE as excellent, and 100% would recommend the program to a friend or family member. Over 50% of participants connected outside of class time for a self-initiated coffee club. Adverse events of falls and fractures were reported for 2 participants, which occurred at home unrelated to the dance intervention during the study period. Pre-determined thresholds for feasibility were met for all outcomes. DISCUSSION: GERAS DANCE is a feasible and enjoyable program for older adults with early cognitive or mobility impairments. GERAS DANCE curriculum grading (duration; sequence; instructions) and motor complexity increases in agility, balance, and coordination appear appropriately tailored for this population. Future work will explore the feasibility of GERAS DANCE in new settings (i.e., virtually online, community centers, or retirement homes) and the mind-body-social benefits of dance.

Digital Ageism: Challenges and Opportunities in Artificial Intelligence for Older Adults.

Artificial intelligence (AI) and machine learning are changing our world through their impact on sectors including health care, education, employment, finance, and law. AI systems are developed using data that reflect the implicit and explicit biases of society, and there are significant concerns about how the predictive models in AI systems amplify inequity, privilege, and power in society. The widespread applications of AI have led to mainstream discourse about how AI systems are perpetuating racism, sexism, and classism; yet, concerns about ageism have been largely absent in the AI bias literature. Given the globally aging population and proliferation of AI, there is a need to critically examine the presence of age-related bias in AI systems. This forum article discusses ageism in AI systems and introduces a conceptual model that outlines intersecting pathways of technology development that can produce and reinforce digital ageism in AI systems. We also describe the broader ethical and legal implications and considerations for future directions in digital ageism research to advance knowledge in the field and deepen our understanding of how ageism in AI is fostered by broader cycles of injustice.

Social Isolation in Later Life: The Importance of Place, Disadvantage and Diversity.

Social isolation among older people is a complex social problem and growing policy concern. This study investigated social isolation under the auspices of the Hamilton Senior Isolation Impact Plan, a government funded program in Canada. It situates the study of social isolation in a unique region of Ontario and involved 7 focus groups and 32 interviews with older people and stakeholders. Results outline how place and spatial relations can create and/or reinforce isolation; how addressing social isolation requires attention to the relationship between poverty, inequality and disadvantage; and how regional experiences of isolation may differ substantially from what is assumed, where diversity and the needs of particular sub-populations of older people are concerned. Findings highlight the need to broaden policy and practice efforts on social isolation to better include diverse groups of older people who may be poorly served by the agenda of connection alone.

Emergent Issues in Directly-Funded Care: Canadian Perspectives.

Direct Funding (DF) provides individuals with a budget to arrange their own home care instead of receiving publicly arranged services. DF programs have evolved in a number of countries since the 1970s. In Canada, while small-scale DF programs have existed since the early 1970s, the research on these programs remains limited. Responding to gaps identified by an umbrella review and using a health equity framework, this research extends the knowledge base on DF programs from a Canadian perspective through an environmental scan. The research asks: What are the features of DF programs across Canada? What are the emerging issues related to program design and policy development? The study employed a qualitative environmental scan design, gathering data through questionnaires and semi-structured interviews (n = 23). The findings include a summary table describing features of 20 programs and two interview themes: a lack of information on DF workers and concerns about the growing role of home care agencies. This study has the potential to contribute to long-term health equity monitoring research. The findings suggest that as DF expands in Canada, promoting hiring from personal networks may address inequities in rural access to home care services and improve social outcomes for linguistic, cultural, and sexual minorities. However, the findings underscore a need to monitor access to DF programs by people of lower-socioeconomic backgrounds in Canada and discourage policy design that requires independent self-management, which disadvantages people with compromised decision-making capacities.

Frailty and Life-Space Mobility: Implications for Clinical Practice and Research.

Frailty is an important medical syndrome that can be prevented or treated with specific interventions. However, there is limited research evidence on multifactorial perspectives of frailty management and its impact on daily function including mobility declines and changes in life-space mobility. Using the person-environment-occupation (PEO) model we aim to describe the relationship between frailty and life-space mobility in older adults. This manuscript provides a new framework for clinical practice and research implications of frailty and life-space mobility in older adults including: (1) overview of key concepts, (2) application of the PEO model to describe how frailty (personal) and life-space (environmental) can influence occupational performance, and (3) clinical practice implications to improve frailty-related immobility. This new framework provides a starting point to extend the focus of frailty beyond the individual to encompass the environmental context within which people live and move.

Critical Knowledge Mobilization: Directions for Social Gerontology.

The concept of knowledge mobilization (KMb) is prominent in governance frameworks of tri-council funding in Canada. Yet there are a number of conceptual and practical challenges when such ideas are proposed for adoption across large multidisciplinary contexts. This research note introduces the concept of critical knowledge mobilization as a way to understand KMb in large multidisciplinary teams and social gerontology. It begins with a high-level sketch of the historic changes in knowledge production and knowledge sharing, followed by a definition of critical knowledge mobilization and examples of historical ideas and everyday tensions in practice. Building on these, we propose the need to advance and shift the culture of KMb, and to embark on engaged research as a means of innovation. We suggest that a reflexive process of critical KMb can facilitate innovation and promote a culture of knowledge mobilization in Canadian social gerontology.

Protecting the privacy of technology users who have cognitive disabilities: Identifying areas for improvement and targets for change.

INTRODUCTION: Information Technologies (IT) may serve assistive roles that facilitate the interaction of people living with cognitive disabilities (CD) within their environments. However, there are some notable concerns related to privacy threats associated with the use of IT. The purpose of this study was to examine how assistive technology developers may best adapt over time to develop their IT to be resilient against threats to privacy. We therefore focused on the following areas: (1) developers' knowledge and practices related to privacy protection; (2) challenges when applying recommended practices, and; (3) preferred channels to acquire knowledge. METHOD: We conducted semi-structured interviews with ten technology developers who are members of the AGE-WELL network undertaking research and development of assistive technologies to be used by people who have cognitive disabilities. We used an inductive-deductive method for the analysis of qualitative data to examine participant responses and generate themes related to the study goals. RESULTS: Principal themes that emerged from the data include practices specific to populations with CD, challenges to obtaining consent to use of information, and preferred channels to acquire knowledge. CONCLUSION: We identify areas of focus for developing a knowledge mobilization strategy to improve relevant policies and practices.

Supporting Older Homeless Persons' Positive Relocations to Long-Term Care: Service Provider Views.

BACKGROUND AND OBJECTIVES: This study sought to explore the challenges and opportunities associated with supporting older homeless persons' relocations to long-term care (LTC) from the perspective of service providers. It aims to inform how to improve relocation processes for this vulnerable and growing subpopulation of older persons. RESEARCH DESIGN AND METHODS: This cross-sectional qualitative study employed semistructured face-to-face interviews with service providers from two Health and Social Service Centres in Montreal, Quebec. All interviews were audio-recorded, transcribed verbatim, and thematically analyzed in five stages. RESULTS: A total of eight service providers reported on their experiences supporting over 40 relocations of older homeless persons (50+) in the last year. According to participants, older homeless persons' trajectories into LTC typically included a series of neglected medical issues followed by hospitalization and eventual relocation to LTC. Systemic barriers such as limited-time for proper planning, insufficient housing options for persons with minor functional limitations, disregard for preferred geographic location, multiple moves, and staff prejudices worked together to expedite premature relocation and challenge relocation processes. DISCUSSION AND IMPLICATIONS: Older homeless persons appear to be at heightened risk of premature and challenging relocation processes. Expanding housing stock for persons with functional limitations, strengthening intersectoral collaborations, providing education and training to staff, and ensuring flexibility around rules and regulations in receiving LTC homes would both improve access to aging in place for this marginalized group of older persons and ensure conditions are in place to support positive relocations to LTC for those who require it.

Precarity and Aging: A Scoping Review.

BACKGROUND AND OBJECTIVE: The concept of precarity holds the potential to understand insecurities and risks experienced by older people in the contemporary social, economic, political and cultural context. This study maps existing conceptualizations of precarity in relation to aging and later life, identifies key themes, and considers the use of precarity in two subfields. RESEARCH DESIGN AND METHODS: This article presents the findings of a two-phase scoping study of the international literature on precarity in later life. Phase I involved a review of definitions and understandings of precarity and aging. Phase II explored two emerging subthemes of disability and im/migration as related to aging and late life. RESULTS: A total of 121 published studies were reviewed across Phase I and Phase II. Findings reveal that the definition of precarity is connected with insecurity, vulnerability, and labor and that particular social locations, trajectories, or conditions may heighten the risk of precarity in late life. IMPLICATIONS AND DISCUSSION: The article concludes by outlining the need for conceptual clarity, research on the unique multidimensional features of aging and precarity, the delineation of allied concepts and emerging applications, and the importance of linking research results with processes of theory building and the development of policy directives for change.

Precarious Aging: Insecurity and Risk in Late Life.

Population aging and longevity in the context of declining social commitments raise concerns about disadvantage, inequality, and the well-being of older people. In this short piece, we use the concept of precarity as a lens to understand new and sustained forms of insecurity that affect late life, and we illustrate how these risks, when experienced over time and in relation to conditions such as austerity, can deepen disadvantage.

Social Isolation in Later Life: Extending the Conversation.

As Canada's population continues to age, social isolation among older people is a growing concern and national-level priority. Although much is known about individual-level risks and negative health outcomes associated with social isolation in later life, the impact of life course trajectories and the more collective experiences are seldom considered. Current definitions and program responses tend to rely on individualized approaches to social isolation. Here, we argue that the conversation be extended to consider the social and cultural aspects of social isolation among older people. Specifically, we suggest that definitions and approaches consider three particular dimensions: temporal factors, spatial factors, and the relationship between social isolation and exclusion. Doing so, we argue, would result in a more inclusive approach to social isolation in late life, and the development of capacity to address social isolation among a wide range of older people, particularly the needs of vulnerable or marginalized groups.

Precarity in late life: Understanding new forms of risk and insecurity.

Population aging and longevity in the context of declining social commitments, raises concerns about disadvantage and widening inequality in late life. This paper explores the concept of precarity as a means to understand new and sustained forms of risk and insecurity that affect late life. The article begins with a review of the definition and uses of precarity in a range of scholarly fields including social gerontology. It then draws on illustrations from three locations of experience including older women, aging with a disability, and the foreign-born, to outline how precarity renders visible the disadvantages carried into late life, and new insecurities that emerge at the moment of needing care in the context of austerity. The argument being put forward is that precarity can be used to illustrate how risks and insecurities, experienced over time, in longevity, and the context of austerity, can deepen disadvantage. This lens thus holds the potential to challenge individual interpretations of risk, and situate experiences of disadvantage in the economic and political context. We conclude that contemporary conditions of austerity and longevity intersect to produce and sustain risk and disadvantage into late life.

Understanding the experiences of racialized older people through an intersectional life course perspective.

This article proposes the development of an intersectional life course perspective that is capable of exploring the links between structural inequalities and the lived experience of aging among racialized older people. Merging key concepts from intersectionality and life course perspectives, the authors suggest an analytic approach to better account for the connections between individual narratives and systems of domination that impinge upon the everyday lives of racialized older people. Our proposed intersectional life course perspective includes four dimensions: 1) identifying key events and their timing, 2) examining locally and globally linked lives, 3) exploring categories of difference and how they shape identities, 4) and assessing how processes of differentiation, and systems of domination shape the lives, agency and resistance among older people. Although applicable to various forms of marginalization, we examine the interplay of racialization, immigration, labour and care in later life to highlight relationships between systems, events, trajectories, and linked lives. The illustrative case example used in this paper emerged from a larger critical ethnographic study of aging in the Filipino community in Montreal, Canada. We suggest that an intersectional life course perspective has the potential to facilitate a deeper understanding of the nexus of structural, personal and relational processes that are experienced by diverse groups of older people across the life course and into late life.

The Experiences of Reciprocity among Filipino Older Adults in Canada: Intergenerational, Transnational, and Community Considerations.

This article illustrates the concept of reciprocity in the context of immigrant families. It recommends that definition of reciprocity account for exchanges beyond the immediate family, and render visible the simultaneous location of older people as care recipients and providers, and care arrangements across generations, borders, community, and time. Adopting a critical ethnographic study on the aging and care experiences of older Filipinos in Canada, this article analyzes data from extended observations and in-depth semi-structured interviews with 18 older people, 6 adult children, and 13 community stakeholders. Findings highlight the unique configurations of care among the Filipino community whereby older people engage in care exchange as active participants across intergenerational, transnational, and fictive kin networks.

Precarity in late life: rethinking dementia as a 'frailed' old age.

Approaches to ageing that are organised around productivity, success, and active late life have contributed to views of dementia as an unsuccessful, failed or 'frailed' old age. Operating through dominant frameworks, socio-cultural constructs and organisational practices, the 'frailties' of the body and mind are often used to mark the boundaries of health and illness in late life, and shape responses accordingly. Our concern is that both the taken for granted and the 'imagined' can further marginalise persons who occupy the locations of dementia and disablement. This article analyses the extent to which frailty and dementia are better understood in the context of new forms of insecurity affecting the life course. Drawing on the concept of 'precarity', this article shifts debates on the 'fourth age' away from age or stage-based thinking, into a recognition of the shared vulnerability and responsibilities for care. The argument of this article is that 'precarity' represents a 'new form of ageing', notably as regards its impact on the upper extremes of the life course. The article concludes with a call for a response that is grounded in an acknowledgement of the fragility and limitations which affect human lives, this requiring grounding in inclusive forms of citizenship.