Society & Economicsarticle2026-09-18

Conceptualizations of compassion in the context of dementia caregiving: A scoping review protocol

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Abstract

Background Compassion is widely recognized as a vital component of dementia caregiving, yet its conceptualization, definition, and operationalization remain inconsistent across contexts. In dementia caregiving, compassion is often conflated with empathy, emotional labor, and relational care, obscuring its unique characteristics and applications. Clarifying how compassion is understood and applied, particularly among unpaid family caregivers, is essential for advancing research, policy, and practice. Objective This paper outlines a scoping review protocol to map and synthesize empirical studies examining the conceptualizations, definitions, and operationalization of compassion in dementia caregiving by unpaid family caregivers. The forthcoming review will identify how compassion is framed and measured across diverse care settings and caregiver populations, providing a foundation to inform future compassion-based interventions and assessment tools. Methods Following Joanna Briggs Institute (JBI) methodology and the PRISMA-ScR reporting guidelines, this forthcoming review will systematically search CINAHL, EMBASE, MEDLINE, and PsycINFO. Eligible studies include qualitative, quantitative, and mixed-method empirical research focused on family caregivers of persons living with dementia. Studies exploring compassion or self-compassion conceptualization, definition, or operationalization will be included. Non-empirical works, reviews, and paid caregiving roles are excluded. Screening and data extraction will be conducted independently by two reviewers using a form informed by the Compassion-Focused Care Framework (CFCF), which emphasizes Affiliative relationships, Bidirectional communication, Compassionate partnerships, and the structural supports of Compassionate Design, Education, and systemic Call to Action. Data will be synthesized using descriptive statistics and qualitative content analysis. Patient and Public Involvement Caregiver partners from Alzheimer’s Societies and Ontario Health Teams will contribute throughout the review process, including study selection, interpretation, and dissemination. Engagement is structured according to the Ontario Brain Institute framework and CIHR principles, ensuring inclusiveness, mutual respect, support, and co-building. A peer-researcher with lived caregiving experience will lead patient engagement efforts. Discussion This review will provide a comprehensive synthesis of how compassion is understood and applied in family dementia caregiving, addressing a critical gap in the literature. By identifying existing measures and conceptual frameworks, the findings will inform the development of more nuanced, caregiver-centered interventions and policies aimed at enhancing compassionate care. Ultimately, this work seeks to support caregivers’ well-being and improve care quality for people living with dementia.

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Authors: Kristina M. Kokorelias, Robert Simpson, Ron Beleno, Jill Cameron, Erica Dove, Kerry Kuluski, Carrie McAiney, Sarah Munce, Kieran Quinn, Marianne Saragosa, Marina Wasilewski, Marie‐Lee Yous, Lynn Zhu, Jenette Wu, Nathan Stall

Institutions: University of Toronto, University Health Network, University of Waterloo, Sunnybrook Hospital, Ontario Tech University, McMaster University, Toronto Rehabilitation Institute, Sinai Health System, Trillium Health Centre, Sinai Health System, Abiola Ajimobi Technical University Ibadan, Research Institute for Aging, Holland Bloorview Kids Rehabilitation Hospital, Ontario Medical Association