A scoping review of decision-making tools to support substitute decision-makers for adults with impaired capacity

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dc.contributor.authorKing, Seema
dc.contributor.authorFernandes, Brooklynn
dc.contributor.authorJaymes, Timothy S.
dc.contributor.authorBoryski, Gwenn
dc.contributor.authorGaetano, Daniel
dc.contributor.authorPremji, Zahra
dc.contributor.authorVenturato, Lorraine
dc.contributor.authorSantana, Maria J.
dc.contributor.authorSimon, Jessica
dc.contributor.authorHolroyd-Leduc, Jayna
dc.date.accessioned2024-05-24T15:27:12Z
dc.date.available2024-05-24T15:27:12Z
dc.date.issued2024
dc.description.abstractBackground: Substitute decision-makers (SDMs) make decisions that honor medical, personal, and end-of-life wishes for older adults who have lost capacity, including those with dementia. However, SDMs often lack support, information, and problem-solving tools required to make decisions and can suffer with negative emotional, relationship, and financial impacts. The need for adaptable supports has been identified in prior meta-analyses. This scoping review identifies evidence-based decision-making resources/tools for SDMs, outlines domains of support, and determines resource/tool effectiveness and/or efficacy. Methods: The scoping review used the search strategy: Population—SDMs for older adults who have lost decision-making capacity; Concept—supports, resources, tools, and interventions; Context—any context where a decision is made on behalf of an adult (>25 years). Databases included MEDLINE, Embase, CINAHL, PsycINFO, and Abstracts in Social Gerontology and SocIndex. Tools were scored by members on the research team, including patient partners, based on domains of need previously identified in prior meta-analyses. Results: Two reviewers independently screened 5279 citations. Articles included studies that evaluated a resource/tool that helped a family/friend/caregiver SDMs outside of an ICU setting. 828 articles proceeded onto full-text screening, and 25 articles were included for data extraction. The seventeen tools identified focused on different time points/decisions in the dementia trajectory, and no single tool encompassed all the domains of caregiver decision-making needs. Conclusion: Existing tools may not comprehensively support caregiver needs. However, combining tools into a toolkit and considering their application relevant to the caregiver's journey may start to address the gap in current supports.
dc.description.reviewstatusReviewed
dc.description.scholarlevelFaculty
dc.description.sponsorshipThe students received a graduate and summer student stipend from the Brenda Strafford Foundation Chair in Geriatric Medicine, University of Calgary, and 2021 summer student scholarship from Canadian Frailty Network (CFN Project ID: SSA2021-11). This project was also funded by the Alzheimer's Society of Calgary & Pan-Canadian Palliative Care Research Collaborative, in part funded by a contribution from Health Canada, Health Care Policy and Strategies Program. The views expressed herein do not necessarily represent the views of Health Canada.
dc.identifier.citationKing, S., Fernandes, B., Jayme, T. S., Boryski, G., Gaetano, D., Premji, Z., Venturato, L., Santana, M. J., Simon, J., & Holroyd‐Leduc, J. (2024). A scoping review of decision‐making tools to support substitute decision‐makers for adults with impaired capacity. Journal of the American Geriatrics Society. https://doi.org/10.1111/jgs.18812
dc.identifier.urihttps://doi.org/10.1111/jgs.18812
dc.identifier.urihttps://hdl.handle.net/1828/16546
dc.language.isoen
dc.publisherJournal of the American Geriatrics Society
dc.rightsAttribution-NonCommercial 4.0 Internationalen
dc.rights.urihttp://creativecommons.org/licenses/by-nc/4.0/
dc.subjectcaregivers
dc.subjectdecision aids
dc.subjectdementia
dc.subjectsubstitute decision-making
dc.titleA scoping review of decision-making tools to support substitute decision-makers for adults with impaired capacity
dc.typeArticle

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