ArticleJournal of patient-reported outcomes2021
Engaging multi-stakeholder perspectives to identify dementia care research priorities.
Article in Journal of patient-reported outcomes, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
15 citing papers in PubMed, 1 synthesis or guideline pooled it, 22 citations in OpenAlex.
- A Systematic Review of Dementia Research Priorities.Journal of geriatric psychiatry and neurology · 2024Pooled it
- Engagement of understudied populations as community change: The South Texas ADRC model.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Article
- Partnering with Latino communities for dementia research: a mixed-methods study of engagement.Research involvement and engagement · 2026Article
- Involving Societal Stakeholders in Dementia Risk Reduction: An Explorative Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Positioning equity at the core of European dementia research: a pan-European co-produced perspective from the PANEUCARE consortium.Frontiers in medicine · 2026Article
- Moving beyond tokenism: Sustaining engagement of persons living with dementia in identifying emergency research priorities.Journal of the American Geriatrics Society · 2025Article
- Stakeholder perceptions of dementia in Colombia: a qualitative study.BMC public health · 2025Article
- A scoping review of outcome measures for people living with dementia and family supporters to evaluate Recovery College dementia courses.Frontiers in psychiatry · 2025Review
- Priority setting in dementia palliative care research for people living with dementia and carers: A mixed methods consensus study.Palliative care and social practice · 2025Article
- A need to integrate pharmacological management for multimorbidity into dementia guidelines in Australia.Frontiers in public health · 2024Review
- "An animated socialization without substance:" experiences of persons living with dementia through the COVID-19 pandemic.Dementia (London, England) · 2022Article
- Research priorities for homecare for older people: A UK multi-stakeholder consultation.Health & social care in the community · 2022Article
- Article
- Engagement with a diverse Stakeholder Advisory Council for research in dementia care.Research involvement and engagement · 2021Article
- Synthesizing Best Practices to Promote Health Equity for Older Adults Through Community-Engaged Research.Research in gerontological nursingReview
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 3 institutions in 1 country.
Funding
Abstract
objectivesThe purpose of this study was to partner with stakeholders to identify gaps in care for persons living with dementia and their family caregivers and from this list, identify priorities for dementia care research.
methodsUsing a community-engaged research approach, a Stakeholder Advisory Council (SAC) consisting of diverse membership including persons living with dementia and family caregivers was convened. Through our work with the SAC, along with input from the wider network through a symposium, webinars, and an online learning community, gaps in dementia care and a list of topics for dementia care research was generated. This list was reduced to 46 topics for dementia care research and sent to stakeholders (persons living with dementia, family caregivers, and health/social care professionals in dementia care) to be prioritized by rating each of the 46 topics as "Not so important," "Important," or "Very important." Priorities for dementia care were summarized by frequencies and proportions.
resultsA total of 186 participants completed the survey from August through October 2020, including 23 (12.4%) persons living with dementia, 101 (54.3%) family caregivers, and 62 (33.3%) health/social care professionals. Consistent across stakeholder groups was the focus on research on how best to support families following a diagnosis of dementia. Among persons living with dementia, research focused on support for continuing to live in their own homes was ranked as the highest priority, rated by 91.3% as "Very Important". High priority research areas for family caregivers included interventions to slow cognitive decline (76.3%) as well as non-pharmacological approaches to manage behavioral symptoms (74.7%). The highest priority research topics for health/social care professionals were focused on the diagnosis including benefits of an early diagnosis (71.4%), how best to deliver the diagnosis (70.9%), and supports needed following a diagnosis (78.6%).
conclusionsThis project draws on the strengths of its multi-stakeholder perspective to support patient-centered outcomes research. Findings are intended to inform those who conduct research and those who fund research about which research topics stakeholders believe are most important and thus have greatest potential to improve the quality of life among people living with dementia and their families.
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.