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Abstract
Introduction The United Nations Convention on the Rights of Persons with Disabilities asserts that all persons with disabilities have the right to receive the support they require to participate in decisions that affect them. Yet, persons with dementia continue to be excluded from decisions on issues that matter to them. Our planned scoping review seeks to address this gap by documenting the current knowledge on supported decision-making for persons with dementia and informing the next steps for research and practice.
Methods and analysis We will use Arksey and O’Malley’s (2005) six-stage framework to guide our review of the English scientific literature (2005 onwards), searching the following databases: MEDLINE, PsycINFO, CINAHL, AgeLine and the Social Science Abstracts. Our review will focus on primary studies examining supported decision-making for persons with dementia, including the voices of those with dementia. Guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews, we will identify (1) domains of supported decision-making discussed in the empirical literature and (2) practices/factors that facilitate or inhibit supported decision-making. Consultations with persons with dementia and their care partners will provide insights into lived experiences, helping identify gaps between research literature and lived realities. The preliminary title and abstract search for eligible articles were conducted between August and October 2023 and updated in June 2024, yielding 56 eligible articles for review.
Ethics and dissemination This scoping review will be conducted following the standards of the Tri-Council Policy Statement for Ethical Conduct for Research Involving Humans (1998 with 2000, 2002 and 2005 amendments). The procedures for eliciting feedback from persons with dementia and their care partners were approved by the Office of Research Ethics Board at McGill University (Reference # 23-08-048). Dissemination of review findings to persons with dementia and care partners will occur during ongoing community consultations. Visual aids and brief lay summaries will be used to facilitate input and dialogue. Dissemination to the broader practice and research communities will include workshops conducted in collaboration with study partners and presentations and publications in peer-reviewed forums.
- Review
- Dementia
- Aging
- Decision Making
- Caregivers
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STRENGTHS AND LIMITATIONS OF THIS STUDY
This review will employ a comprehensive set of search terms and decisional domains (eg, health, care, legal and financial).
Advisory groups of persons with dementia and care partners will be consulted as the review evolves.
Consultations will be locally conducted, limiting transferability to other jurisdictions.
Only English literature will be reviewed.
Introduction
Supported decision-making is a process wherein persons with decisional limitations are provided with assistance/guidance or input from families, friends and/or legally appointed decision-makers to participate as fully as possible in decisions of importance to them and their lives.1 The United Nations Convention on the Rights of Persons with Disabilities asserts that all persons with disabilities should be granted this legal right.2 Nonetheless, the exclusion of persons with dementia from participation in decisions related to their lives is pervasive, particularly at moderate to advanced stages of the condition when verbal communication is more challenging.3 4
Supporting the participation of individuals with dementia in decision-making around daily care, routines and life choices is critical to upholding principles of autonomy and notions of social citizenship.5 Yet, a comprehensive review of how to best facilitate and promote the active participation of persons at varying stages of dementia in decisions that impact them is a striking gap in the literature to date.
Scoping reviews help outline the available evidence in a given field.6 This knowledge synthesis approach aligns well with our aims of providing an overview of how supported decision-making has been studied (eg, what domains have been examined, whose voices have been represented) and identifying knowledge gaps of importance to persons with dementia and their care partners.7 8 We have elected to include a broad set of associated and related terms/principles in our search to offer conceptual clarity on what appears to be an important yet ill-defined process. For example, because the principle of autonomy lies behind the legal right for decisional involvement, studies that frame supported decision-making regarding autonomy, citizenship or rights will be considered.
Our scoping review builds on three former reviews that examined supported decision-making for persons with dementia.4 9 10 Findings from all three reviews affirm a desire for involvement around care decisions, discrepancies between perceptions of participation on the part of persons with dementia and care partners and limited empirical attention to practices that support decisional involvement in care. All reviews focused on decisions related to health and care, including medical treatment, daily personal care and support services. Building on former work, we will extend our search to include decisions beyond the domains of health and care (eg, legal and financial) and explore if practices for decisional support have been the subject of studies published after 2016 (the most recent articles included in former reviews).
Methods
Our scoping review will be guided by the methodological framework proposed by Arksey and O’Malley (2005). More specifically, the review will follow six stages: (1) identification of the research issue; (2) identification of relevant studies; (3) selection of eligible studies; (4) data charting; (5) data collation, summarization and initial reporting and (6) consultation with stakeholders to collect input and finalise reporting.11 We have already engaged in stages 1–3 at this protocol stage. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) checklist will be used to help shape our reporting.12
Stage 1: identification of research questions
Following consultation with a team of researchers and in keeping with the knowledge most pertinent to improving collaborative decision-making practices for persons with dementia, the following research questions have already been developed by our team to guide this review:
What domains of supported decision-making (eg, health, care, legal and financial) are represented in empirical research on persons with dementia?
What practices/factors are reported to facilitate or inhibit supported decision-making for persons with dementia at varying stages of the condition?
Stage 2: identifying relevant studies
We have selected five electronic databases for our search: MEDLINE, CINAHL, AgeLine, PsycINFO and the Social Science Abstracts. Search terms for each database were identified in consultation with two librarians: one with extensive expertise in searching the selected databases and the second with expertise in social gerontology. To ensure comprehensiveness, we also reviewed the references from the three former scoping reviews. In keeping with the PRISMA-ScR guidelines, we have included an outline of our search process for one database (MEDLINE) in online supplemental appendix 1.
Supplemental material
We have developed the following inclusion criteria to guide our review: (1) peer-reviewed; (2) empirically based; (3) available in English; (4) published on or after 2005 (the date when the United Nations first framed participation in decision-making for persons with disabilities as a right); (5) decision-making central to purpose/aims and (6) persons with dementia included in the sample. Studies were excluded if (1) not available in full-text form, (2) decision-making was mentioned but not central and (3) only families, service providers and/or substitute decision-makers were included in the sample. Table 1 provides an overview of the key concepts informing this review and associated terms which were reviewed and tested by a librarian with expertise in social gerontology in July 2023.
Key concepts and associated terms
Stage 3: selection of eligible studies
All paper titles and abstracts resulting from the search procedure (n=15 048) were uploaded to COVIDENCE, a web-based screening and data extraction tool, in August 2023 to identify duplicates (n=2057) and begin the article selection process. Between August and October 2023, two reviewers independently reviewed titles, abstracts (n=12 990) and full texts (n=127). A third reviewer resolved conflicts at both stages. Following input from the peer review process in June 2024, we hand-searched the reference list of three former scoping reviews and identified four additional studies for inclusion. Currently, 56 studies have been retained for data extraction and analysis. Further details regarding the article selection process are outlined in online supplemental appendix 2.
Supplemental material
Stage 4: charting the data
Data extraction will be conducted iteratively by combining inductive and deductive methods. In the first stages of the review, two independent reviewers will extract the following predetermined data: (1) author(s); (2) year of publication; (3) origin/country of origin; (4) aims/purpose; (5) methodology/methods; (6) domain of supported decision-making captured (eg, health, care, legal and financial); (7) practices/factors that facilitate decision-making for people with dementia; (8) practices/factors that inhibit decision-making for people with dementia and (9) other key findings related to decision-making. Coders will also record impressions and insights in a separate column. As coding evolves, data coded as other key findings and coder impressions will be examined and used to develop further categories. Once all data are extracted, further analysis of data contained in categories 6–9 will be conducted to identify emergent themes that address the research questions. The principles of reflexive thematic analysis will be used to guide this process.13 We will engage in iterative exploration, contextual inclusivity, critical engagement, clear presentation and continuous reflection to ensure a comprehensive and nuanced extraction of the articles.
Stage 5: collating, summarising and reporting of preliminary results
The results of our review will be collated and summarised in various formats (map, diagram and table). The PRISMA flowchart will illustrate the process of selecting and excluding data. Information about the articles mentioned in stage 4 will be condensed using frequency counts and means (if applicable). We will categorise evidence from the included studies based on predetermined domains of supported decision-making for persons with dementia (eg, health, care, legal and financial) and develop new domains as they emerge.14 At this stage, we will also compare and contrast perspectives shared by persons with dementia, their families and professionals. Two authors will extract the evidence using the predetermined themes as a guide. As the analysis evolves, new themes will be created in consultation with the broader team. Discrepancies will be resolved through team discussions.
Stage 6: stakeholders’ engagement and final report writing
This scoping review is part of a larger study that includes an advisory group for persons with dementia (n=6) and their family partners (n=6). These groups will be formed in the coming months with the assistance of our study collaborators. They will be consulted as the scoping review evolves. A first meeting will be planned when a preliminary review of extracted themes has been conducted. Plans for further consultations and input will be cocreated with these groups. Our planned community consultations will help us to consider our results alongside the realities and priorities of persons with dementia and their care partners12. This will facilitate the reporting of findings of high importance to persons with dementia and their care partners. Key findings from our review will then be used to inform the second stage of our larger study, which aims to produce a series of recommendations to maximise decisional support when engaging persons with dementia in domains of high importance to them.
Patient and public involvement
We are in the process of forming a committee of persons with dementia and care partners to seek input and guidance on our scoping review process and preliminary results and to cocreate a protocol for further engagement.
Ethics and dissemination
This scoping review will be conducted in accordance with the standards of the Tri-Council Policy Statement for Ethical Conduct for Research Involving Humans (1998 with 2000, 2002 and 2005 amendments). The procedures for eliciting feedback from persons with dementia and their care partners have already been approved by the Office of Research Ethics Board at McGill University (Reference # 23-08-048). Dissemination of review findings to persons with dementia and care partners will occur during ongoing community consultations. Visual aids and brief lay summaries will be used to facilitate input and dialogue. Dissemination to the broader practice and research communities will include workshops conducted in collaboration with study partners and presentations and publications in peer-reviewed forums. We hope to use the findings to inform the development of phase two of our larger study, which will explore persons with dementia and family care partners’ experiences with supported decision-making in areas of importance to them.
Ethics statements
Patient consent for publication
Acknowledgments
We express our deep appreciation to Nikki Tummon for her valuable assistance with our proposed search protocol.
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Contributors TS, AG, AC, LMcC, PH and MS conceived and designed the larger study informing this protocol. RZ provided advice and input on this protocol’s data extraction and search strategy. TS, XPM and OO led the writing and preliminary analysis reported in this protocol. All authors revised the protocol critically for important intellectual content, approved the version to be published and agreed to be accountable for all aspects of the work. TS accepts responsibility for the finished work as the guarantor who oversaw the conduct of the protocol, had access to the data and made all final decisions regarding publication.
Funding This review is funded by the 2023 Alzheimer’s Society of Canada proof of concept grant and the Fondation Brain Canada (Grant Number: #24-33).
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, conduct, reporting or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.