ReviewJournal of the American Geriatrics Society2021
Participation of persons with dementia and their caregivers in research.
Review in Journal of the American Geriatrics Society, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
13 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Identifying Facilitators and Obstacles in Piloting Dementia Initiatives Within a Living Lab Approach: Systematic Review.JMIR aging · 2026Pooled it
- Enhancing Enrollment and Adherence in Long-Term Wearable Research on Dementia: Qualitative Systematic Review and Meta-Synthesis.JMIR aging · 2025Pooled it
- The advocacy effect: a grounded theory study on the inclusion of caregivers or nearest support persons in research to better understand patient outcomes in rheumatoid arthritis.Rheumatology international · 2025Article
- Moving beyond tokenism: Sustaining engagement of persons living with dementia in identifying emergency research priorities.Journal of the American Geriatrics Society · 2025Article
- Values of Stakeholders Involved in Applying Surveillance Technology for People With Dementia in Nursing Homes: Scoping Review.JMIR aging · 2025Article
- Implementing Arts on Prescription at Home for People Living With Dementia: A Hybrid-Effectiveness Feasibility Study.Journal of geriatric psychiatry and neurology · 2025Article
- Eating Together but Often Feeling Lonely: Residents' Mealtime Experiences in a Nursing Home.Journal of clinical nursing · 2025Article
- Partners in progress: Advancing dementia research through collaboration.Dementia (London, England) · 2025Article
- Family relationships as a source of narrative identity of people with advanced dementia.BMC geriatrics · 2023Article
- Feasibility of conducting qualitative research with persons living with dementia and their caregivers during a home-delivered meals pilot trial.Pilot and feasibility studies · 2023Article
- Putting participants and study partners FIRST when clinical trials end early.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2022Article
- Meaningful to whom? Minimal clinically important differences and the priorities of individuals living with dementia for everyday function.Alzheimer's & dementia (New York, N. Y.)Article
- Comprehensive Dementia Care Models: State of the Science and Future Directions.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
7 authors.
Funding
Abstract
backgroundThe National Institute on Aging, in conjunction with the Department of Health and Human Services as part of the National Alzheimer's Project Act, convened a 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers. This review article addresses research participation by persons living with dementia (PLWD) and their care partners in two different ways: as research participants with input on outcomes studied and as engaged research partners.
resultsThis article summarizes each of the topics presented at this Summit session, followed by reflection from the session panelists. Lee Jennings examined collection of outcomes directly from PLWD and the potential for individualized outcomes to enhance measurement in intervention trials. Ron Petersen discussed the impact of nomenclature on research and clinical care, and how and why investigators should be mindful of the connection between dementia nomenclature and the conduct of dementia research. Tabassum Majid examined strategies for engagement in research, including specific examples of involving PLWD and their care partners (including staff in assisted living and skilled nursing facilities), and the potential for this research engagement to improve our understanding of interventions in dementia.
conclusionsResearch participation by PLWD and their care partners is evolving. This review summarizes three areas of opportunity and steps for researchers to work with PLWD and their care partners to design and conduct research that enhances knowledge based on what we learn from PLWD and their care partners, and creates knowledge with them.
Indexed as
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.