Supported decision-making with persons with dementia: a scoping review protocol in partnership with lived experts.

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.

Acceptability and preliminary effects of the volunteer-supported Meaningful Moments program to engage older adults with advanced dementia on a hospital-based specialized dementia care unit: a mixed methods study.

BACKGROUND: Namaste Care offers practical skills for healthcare providers, volunteers, and families to meaningfully engage individuals with dementia in activities (e.g., music, massage, reminiscing, socialization, aromatherapy, snacks). A hospital-based specialized dementia care unit for patients with mid- to late-stage dementia offered an adapted version of the Namaste Care program, which was called Meaningful Moments. The aim of this study was to assess the acceptability and preliminary effects of this novel approach using trained volunteers for older adults with mid- to late-stage dementia. METHODS: A mixed methods multiphase design was used. Qualitative description was used to explore acceptability of the Meaningful Moments program delivered over 6 months through focus groups (e.g., charge nurses, therapeutic recreationists, nurses, social workers) and individual interviews with one volunteer and two family members. A prospective pre-post-test study design was used to evaluate the preliminary effects of the program for patients with dementia and family members. Outcomes included quality of life, neuropsychiatric symptoms, and pain for patients with dementia and family carer role stress and the quality of visits for families. Data were collected from June 2018 to April 2019. Descriptive analyses of participants' characteristics were expressed as a mean (standard deviation [SD]) for continuous variables and count (percent) for categorical variables. Focus group and individual interview data were analyzed using thematic analysis. The generalized estimating equations (GEE) method was used to assess change in the repeated measures outcome data. RESULTS: A total of 15 patients received the Meaningful Moments interventions. Families, staff, and volunteers perceived that patients experienced benefits from Meaningful Moments. Staff, volunteers, and families felt fulfilled in their role of engaging patients in the Meaningful Moments program. Individualized activities provided by volunteers were perceived as necessary for the patient population. There were no statistically significant improvements in patient outcomes. There was a statistically significant decline in family carer role stress. CONCLUSIONS: Using a one-on-one approach by volunteers, patients experienced perceived benefits such as improved mood and opportunities for social interactions. There is a need for tailored activities for older adults with advanced dementia through practical strategies that can offer benefit to patients.