Trial reportDementia (London, England)2022
Embedding patient and public involvement in dementia research: Reflections from experiences during the 'Journeying through Dementia' randomised controlled trial.
Trial report in Dementia (London, England), 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
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
9 citing papers in PubMed, 12 citations in OpenAlex.
- 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
- Lessons learned from including Patient and Public Involvement members throughout research projects in Tic Disorder research.Research involvement and engagement · 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
- Dementia-related primary care training needs: a qualitative study.Arquivos de neuro-psiquiatria · 2025Article
- "We will tell everyone!" Capturing the impact of public and patient involvement in music therapy and dementia research through songwriting.Dementia (London, England) · 2025Article
- Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- A Community of Practice to increase education and collaboration in dementia and ageing research and care: The Liverpool Dementia & Ageing Research Forum.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Participatory development of a framework to actively involve people living with dementia and those from their social network, and healthcare professionals in conducting a systematic review: the DECIDE-SR protocol.Research involvement and engagement · 2023Review
- "Follow the Musical Road": Selecting Appropriate Music Experiences for People with Dementia Living in the Community.International journal of environmental research and public health · 2023Article
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 at 5 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe involvement of people with a diagnosis of dementia in patient and public involvement and engagement (PPIE) in research is an emerging field in the delivery of studies. Researchers need to understand and use the learning derived from various projects so that this growing body of knowledge can be applied in future research.
objectiveTo embed PPIE throughout a randomised controlled trial of a psychosocial intervention called Journeying through Dementia. We identify and discuss the approaches to involvement that worked well and those where improvements were indicated.
designThe Guidance for Reporting Involvement of Patients and the Public Short Form (GRIPP2-SF) is used to describe and critically appraise the approaches taken and the impact of PPIE involvement upon study processes, the study team and those people with dementia and their supporters who acted as advisors.
findingsThe involvement of people with a diagnosis of dementia and supporters as study advisors improved the accessibility and relevance of the research for people living with dementia. It also highlighted issues that researchers may have otherwise overlooked. Successful engagement of people with dementia and their supporters in the study was associated with staff skills and particularly use of techniques to scaffold meaningful involvement, as well as participants' memory and cognitive capacity. However, embedding robust and meaningful involvement processes required significant time and resources. DISCUSSION: We propose that certain research processes need to be adapted to be accessible and appropriate for people living with dementia. Recruitment of PPIE advisors needs to reflect population diversity. There also needs to be greater parity of voice between people with lived experience of dementia and researchers. These steps will increase the impact of PPIE in research and improve the experience for those who volunteer to be PPIE advisors.
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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.