A narrative review exploring the role of co-production in dementia practice and research

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The concept of co-production, initially coined by Elinor Ostrom in the 1970s, has since evolved to encompass diverse fields including education, public policy and health and social care. In dementia care and research, co-production is a way to empower those with lived experience, yet its definition and implementation remain inconsistent.  This review explores the development, principles and challenges of co-production in the context of dementia, with a particular emphasis on safeguarding its integrity.

The term co-production is often used interchangeably with other terms, e.g. co-creation and co-design, therefore, we draw on our definition that was developed with lived experts, researchers, and community partners in the EMPOWER Dementia Network+: A collaborative approach that prioritises equity, shared power and shared responsibility among all participants in a safe space. It ensures the ongoing involvement of diverse and inclusive groups, especially those directly affected, from the outset. Our process of creating this definition reflects our belief that co-production is not limited to a single phase of a project but embedded throughout, shaping both how we work and what we produce.

Through a narrative exploration of the journey of co-production – from visioning and planning to delivery and outcomes – we highlight what meaningful co-production looks like in practice and research. We explore the challenges and barriers that are so often faced – including digital and geographical exclusion, inaccessible language, lack of training and resources – and suggest ways of overcoming these to ensure a meaningful and valuable experience for all involved. We also distinguish between in-person, online and hybrid delivery, offering considerations to make these spaces optimum for co-production. We assert the potential and true impact that co-production can have, and its ability to galvanise research into new realms. The review also draws on real examples of co-production, including a reflection by the co-authors on their experience of writing together as two researchers and one lived expert. The paper concludes with a groundbreaking toolkit for lived experts, researchers and practitioners to utilise in future.

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Pres Prop Abstract

In dementia care and research, co-production is a way to empower those with lived experience, yet its definition and implementation remain inconsistent. This review explores the development, principles and challenges of co-production in the context of dementia, with a particular emphasis on safeguarding its integrity.

We draw on our definition that was developed with lived experts, researchers, and community partners in the EMPOWER Dementia Network+: A collaborative approach that prioritises equity, shared power and shared responsibility among all participants in a safe space.

From visioning and planning to delivery and outcomes, we highlight what meaningful co-production looks like in practice and research. We explore the challenges and barriers that are so often faced e.g., digital and geographical exclusion, and suggest ways of overcoming these to ensure a meaningful experience for all involved. The paper concludes with a groundbreaking toolkit for lived experts, researchers and practitioners to utilise in future.

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Lead Presenter Biography

Ellie is a Creative Dementia Practitioner, Researcher and Consultant based in Plymouth (UK). Ellie is an expert in using creative practice to enable people with dementia and intergenerational groups to connect to themselves and others, fostering empathy, building belonging and challenging disconnection in our society.

Ellie has 10 years experience of running Sensory Trust’s flagship dementia project Creative Spaces alongside her current role at The Photobook Project. Through her practice and research, Ellie is passionate about empowering the voices of people with dementia and showing what is still possible if the right frameworks, support and opportunities are created for individuals.

Ellie’s research involves using creative methods – such as The Photobook Project – to empower people with dementia to share their perspectives and experiences. Ellie is currently undertaking a PhD at University of Hull with this focus, alongside her role as Programme Director for the MSc Dementia. She also consults on research projects related to dementia, intergenerational activity and older people.

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