Conceptualizations of compassion in the context of dementia caregiving: A scoping review protocol
15 affiliations
- 1Division of General Internal Medicine and Geriatrics, Sinai Health and the University Health Network, Canada
- 2Rehabilitation Sciences Institute, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
- 3Department of Occupational Sciences and Occupational Therapy, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
- 4KITE Research Institute, University Health Network, Toronto, Ontario, Canada
- 5Institute for Better Health, Trillium Health Partners, Mississauga, Ontario, Canada
- 6Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
- 7University of Waterloo, Waterloo, Ontario, Canada
- 8Schlegel-UW Research Institute for Aging, Waterloo, Ontario, Canada
- 9Holland Bloorview Kids Rehabilitation, Bloorview Research Institute, Toronto, Ontario, Canada
- 10Temmy Latner Center for Palliative Care, Sinai Health, Toronto, Ontario, Canada
- 11Department of Medicine, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
- 12Science of Care Institute, Sinai Health, Toronto, Ontario, Canada
- 13John’s Rehab, Sunnybrook Research Institute, Toronto, Ontario, Canada
- 14School of Nursing, McMaster University, Hamilton, Ontario, Canada
- 15Ontario Hospital Association, Toronto, Ontario, Canada
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. 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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BibTeX
@article{kokorelias2026conceptualizations,
title = {{Conceptualizations of compassion in the context of dementia caregiving: A scoping review protocol}},
author = {Kristina M. Kokorelias and Robert Simpson and Ron Beleno and Jill Cameron and Erica Dove and Kerry Kuluski and Carrie McAiney and Sarah E. P. Munce and Kieran Quinn and Marianne Saragosa and Marina Wasilewski and Marie-Lee Yous and Lynn Zhu and Jenette Wu and Nathan Stall},
journal = {PLOS One},
year = {2026},
month = sep,
doi = {10.1371/journal.pone.0357411},
url = {https://doi.org/10.1371/journal.pone.0357411},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Conceptualizations of compassion in the context of dementia caregiving: A scoping review protocol
AU - Kristina M. Kokorelias
AU - Robert Simpson
AU - Ron Beleno
AU - Jill Cameron
AU - Erica Dove
AU - Kerry Kuluski
AU - Carrie McAiney
AU - Sarah E. P. Munce
AU - Kieran Quinn
AU - Marianne Saragosa
AU - Marina Wasilewski
AU - Marie-Lee Yous
AU - Lynn Zhu
AU - Jenette Wu
AU - Nathan Stall
PY - 2026
DA - 2026/09/18
JO - PLOS One
DO - 10.1371/journal.pone.0357411
UR - https://doi.org/10.1371/journal.pone.0357411
AB - 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. 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.
SN - 1932-6203
ER -