ArticleAlzheimer's & dementia : the journal of the Alzheimer's Association2025
Public and participant involvement as a pathway to inclusive dementia research.
Article in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis 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
19 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Community engagement, recruitment, and retention of minoritized participants in Alzheimer's disease and related dementia research: A systematic review of disparities.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Pooled it
- Rethinking the relationship between ambulatory activity and falls in long-term care: risk versus reward.The journals of gerontology. Series A, Biological sciences and medical sciences · 2025Trial
- Using Patient and Public Involvement to Develop a Survey for Economic Evaluation in Dementia Research.Applied health economics and health policy · 2026Article
- Co-Designing an Easy-Read Adult Social Care Outcomes Measure for Older People: Approach to and Reflections on Involving People Living With Dementia and Their Supporters.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Patient and public involvement in pragmatic trials with older adults: a multi-methods study of researchers' experiences.BMC geriatrics · 2026Article
- Using Design Thinking to Develop a Tool for Strengthening Nurses' Cultural Competence: Lessons Learned.Journal of transcultural nursing : official journal of the Transcultural Nursing Society · 2026Article
- Evaluation and lessons learned regarding Public Involvement: a panel advising on an Alzheimer's disease and related dementia cohort study.Research involvement and engagement · 2026Article
- Positioning equity at the core of European dementia research: a pan-European co-produced perspective from the PANEUCARE consortium.Frontiers in medicine · 2026Article
- Advancing global dementia research through equity and inclusion.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Article
- National and international models of involving people with lived experience in dementia policy, advocacy and research.Frontiers in dementia · 2026Article
- An international cross-sectional study of dementia researchers' own perspectives on patient and public involvement.Scientific reports · 2025Article
- Matters of the Heart: Co-Creating a Peer-Led Social Health Intervention for People Living with Dementia.Behavioral sciences (Basel, Switzerland) · 2025Article
- Research should be conducted with us, not on us: Perspectives on Alzheimer's disease clinical trials for persons with Down syndrome.Alzheimer's & dementia. Behavior & socioeconomics of aging · 2025Article
- "Being brave, being seen, and having your voice heard": Perspectives of self-advocates and families toward accessible and impactful research of Alzheimer's disease in down syndrome.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Using a Community-Based Participatory Research Approach to Study the Mental Health of Older Adults with a Refugee Life Experience.International journal of environmental research and public health · 2025Article
- Designing an overview Theory of Change for a multi-component support community for people affected by rare dementia.Frontiers in dementia · 2025Article
- Public and participant involvement as a pathway to inclusive dementia research.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Diversity and inclusivity in Australian dementia prevention research: A mixed methods review.Alzheimer's & dementia (New York, N. Y.)Review
- A scoping review of dementia education programs for Chinese, Japanese, Korean, Filipino, and Vietnamese communities.Alzheimer's & dementia (Amsterdam, Netherlands)Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
18 authors.
Funding
Abstract
The field of Alzheimer's disease and related dementias (ADRD) urgently requires inclusive research to ensure the priorities and outcomes of research apply to those most impacted. We postulate public and participant involvement (PPI) as a pathway to achieving the best science, both in research that informs health and social policy as well as in therapeutic studies to treat and prevent ADRD. This position paper aims to provide dementia researchers with evidence to understand how to apply PPI. We begin by highlighting the disparities experienced by people with dementia, including ageism, stigma of cognitive impairment, and health disparities for minoritized communities. We then provide examples of PPI in ADRD across the research lifecycle, from defining research topics of priority to those impacted by ADRD, through the design, analysis, dissemination, and translation to policy and practice. We also provide recommendations to create and maintain collaboration between researchers and communities through PPI. HIGHLIGHTS: A central premise of public and participant involvement (PPI) is collaborative relationships between researchers and community members. To build equitable partnerships, researchers must acknowledge and understand the context of research. This includes ageism, the stigma of dementia, and ongoing discrimination for many minoritized communities. Meaningful partnerships include choice, respect, shared decision making, access, inclusion, and representation. Notably, we recommend that researchers begin partnerships early in the research process and share the impact of PPI on research.
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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.