"Co-production is catnip to my brain. I need it and I would be in care otherwise": a call for action for researchers to safeguard the integrity of co-production in dementia research.

Abstract

Background: In dementia research, co-production is a key mechanism for embedding the perspectives of those with lived experience into decision-making. However, despite its potential, its meaning and application remain inconsistent as co-production can often be limited to a single phase of a research study or tokenistic involvement. Co-authored by two people living with dementia and two researchers, this comment piece examines the evolution of co-production, its underpinning principles, and the challenges that threaten its integrity. Central to this work is a definition co-developed within the EMPOWER Dementia Network+, in collaboration with lived experts, researchers, and community partners. This definition foregrounds equity, shared power, and shared responsibility, and advocates for the sustained involvement of diverse stakeholders from project inception through to completion.

Main text: Utilising co-production resources and models to highlight the key aspects of co-production, this call for action underscores the areas in co-production which need attention and reform by researchers. Through a narrative exploration of the co-production journey, from visioning and planning to delivery and outcomes, the paper identifies key elements that make co-production meaningful in both research and practice. These include embedding co-production throughout the research cycle, ensuring safe and equitable spaces, prioritising diversity and inclusion. Challenges include digital and geographical exclusion, language barriers, lack of training, and limited resources. The paper distinguishes between in-person, online, and hybrid delivery, highlighting how each setting influences engagement and outcomes. Real-world examples illustrate how these principles and barriers play out in practice, including direct quotes from the authors as experts by experience to capture their personal viewpoints.

Conclusion: The comment piece offers a practical framework for embedding co-production meaningfully across research phases, supported by examples that demonstrate its transformative potential. It includes a set of recommendations to ensure power and responsibility are equally shared amongst participants. It positions our new, co-produced toolkit for lived experts, researchers, and practitioners to guide the planning, delivery, and evaluation of a research project. The toolkit has the potential to strengthen the integrity and use of co-production with people living with dementia, reduce tokenistic practices, and improve the relevance and impact of dementia research.