ArticleBMJ open2020
Impact of involving people with dementia and their care partners in research: a qualitative study.
Article in BMJ open, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 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
22 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Recruiting Persons With Dementia: A Systematic Review of Facilitators, Barriers, and Strategies.American journal of Alzheimer's disease and other dementiasPooled it
- Involving People With Dementia in Research: Contributions, Barriers and Evaluation From a Meta-Synthesis and Qualitative Interview Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Family Carer Involvement in Dementia Care Research: A Scoping Review and Expert Consultation.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Bridging Research, Policy, and Practice: Advancing Evidence-Informed Approaches for Dementia Care and Prevention: an expert review by the Health Policy Professional Interest Area from ISTAART.Alzheimer's & dementia. Behavior & socioeconomics of aging · 2026Article
- Development of a Patient and Carer Advisory Board to Co-Design Health Services Research for the Quality of Care of People With Dementia.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Emotional Labor in Dementia Research.Qualitative health research · 2026Article
- Co-Design of a Community of Practice for People With Personal and Professional Expertise or Interest in Dementia in Australia.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- The Participation of Older Persons in the Adoption of Age-Friendly Care Models in Hospital Settings: A Scoping Review.Nursing & health sciences · 2026Article
- Team approach to polypharmacy evaluation and reduction for general practice patients with dementia: the Australian TAPERDem study.Therapeutic advances in drug safety · 2026Article
- An international cross-sectional study of dementia researchers' own perspectives on patient and public involvement.Scientific reports · 2025Article
- Experience, Process, and Impact of Involving Informal Caregivers of People With Dementia as Public Contributors to Inform the Development of a Complex Intervention: A Mixed-Methods Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Harmonising artistic designs with private and collective notions of home: a focus group study of older persons' experiences of art in residential care specialised in dementia care.BMC geriatrics · 2025Article
- A multi-person reflection on using public and patient involvement and engagement to develop dementia research.Research involvement and engagement · 2025Article
- Motivations of family advisors in engaging in research to improve a palliative approach to care for persons living with dementia: an interpretive descriptive study.Research involvement and engagement · 2024Article
- Mapping the evidence on dementia care pathways - A scoping review.BMC geriatrics · 2024Article
- Patient and Public Involvement in Technology-Related Dementia Research: Scoping Review.JMIR aging · 2024Article
- Roles, outcomes, and enablers within research partnerships: A rapid review of the literature on patient and public involvement and engagement in health research.Research involvement and engagement · 2023Review
- Engagement of people with lived experience of dementia advisory group and cross-cutting program: reflections on the first year.Research involvement and engagement · 2022Article
- Patient and Public Involvement in Dermatology Research: A Review.American journal of clinical dermatology · 2022Review
- Keeping track of and recognizing the value of Public Involvement work in dementia research.Frontiers in neurology · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesWe aimed to evaluate the impact of patient and public involvement (PPI) at each stage of the research cycle in a dementia research programme.
designWe used monitoring forms to record the impact of the research programme's PPI at different stages of research and qualitative interviews with all participants to evaluate the impact of PPI.
settingWe evaluated Research User Groups (RUGs-older people with dementia and care partners) which were established to provide PPI support for the research programme in multiple European sites.
participantsWe purposively sampled RUG members (n=34) and researchers (n=13) who had participated in PPI activities. Inclusion criteria for the study were: (a) RUG members who had participated in the research awareness training and in PPI activities and had the capacity to consent; (b) researchers who involved RUGs in their work.
results
conclusionsPPI can have a substantial impact on dementia research and the people involved in the research. To justify the time and expense of PPI, the advantageous practical impacts of PPI should be systematically recorded and consistently reported.
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.