ArticleDementia (London, England)2022
Co-designing complex interventions with people living with dementia and their supporters.
Article 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 26 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
26 citing papers in PubMed, 31 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
- 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
- Co-design-related approaches in medication safety for people with dementia: A scoping review.British journal of clinical pharmacology · 2026Article
- 'Memories we treasure': Evaluating the impact on co-designers and audiences of a photographic exhibition by participants with memory problems.Dementia (London, England) · 2026Article
- Supporting the Well-Being of People Living With Dementia and Their Family Carers Through Concurrent Arts and Well-Being Community Programs: Qualitative Perspectives of Participants and Facilitators.Dementia (London, England) · 2026Article
- Community-based solutions: a principles-to-practice framework to support individuals living with dementia and their care partners.Innovation in aging · 2026Review
- Positioning equity at the core of European dementia research: a pan-European co-produced perspective from the PANEUCARE consortium.Frontiers in medicine · 2026Article
- Matters of the Heart: Co-Creating a Peer-Led Social Health Intervention for People Living with Dementia.Behavioral sciences (Basel, Switzerland) · 2025Article
- Adapting an emergency department fall prevention intervention for persons living with dementia through patient, caregiver, and expert interviews.Scientific reports · 2025Article
- Article
- Dementia-related primary care training needs: a qualitative study.Arquivos de neuro-psiquiatria · 2025Article
- Moving towards meaningful patient and public engagement.Nature reviews. Neurology · 2025Article
- Designing an overview Theory of Change for a multi-component support community for people affected by rare dementia.Frontiers in dementia · 2025Article
- Article
- Pre-implementation planning for a new personalised, dementia post-diagnostic support intervention: exploring the perspective of professional stakeholders.BJPsych open · 2024Article
- Reflections on co-production: Developing a dementia research funding application with a diverse lived experience group.Dementia (London, England) · 2024Article
- Article
- Co-design of the EMBED-Care Framework as an intervention to enhance shared decision-making for people affected by dementia and practitioners, comprising holistic assessment, linked with clinical decision support tools: A qualitative study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Discussing methodological gaps in psychosocial intervention research for dementia: an opinion article from the INTERDEM Methodology Taskforce guided by the MRC framework.Frontiers in dementia · 2024Article
- Meaningful patient and public engagement in dissemination-embedding co-production in dementia research.Frontiers in dementia · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
13 authors at 6 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
BACKGROUND AND
objectivesWe engaged people living with dementia, family carers and health and social care professionals in co-designing two dementia care interventions: for family carers and people living with dementia (New Interventions for Independence in Dementia Study (NIDUS)-family and home-care workers (NIDUS-professional training programme). RESEARCH DESIGN AND
methodsOver October 2019-March 2020, we invited public and patient (PPI) and professional members of our NIDUS co-design groups to complete the PPI Engagement Evaluation Tool (designed to assess engagement activities), and non-professional PPI members to participate in qualitative telephone interviews. We thematically analysed and integrated mixed-methods findings.
resultsMost (15/20; 75%) of the PPI members approached participated. We identified four themes: (1) Creating the right atmosphere: participants found group meetings positive and enabling, though one health professional was unsure how to position themselves within them; (2) Participants influencing the outcome: while most members felt that they had some influence, for one carer consultation seemed too late to influence; (3) Having the right information: several carers wanted greater clarity and more regular updates from researchers; (4) Unique challenges for people living with dementia: memory problems presented challenges in engaging with substantial information, and within a large group. DISCUSSION AND IMPLICATIONS: We reflect on the importance of providing accessible, regular updates, managing power imbalances between co-design group members with lived and professional experiences; and ensuring needs and voices of people living with dementia are prioritised. We encourage future studies to incorporate evaluations of co-design processes into study design.
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.