Co-Production Alongside People with Dementia
Anne and Henry explain how co-production should be embedded in Innovation Fund projects
Co-production goes by many names across research, design, and health and social care, such as co-design, co-creation, participatory research, PPIE (Patient and Public Involvement and Engagement). The terminology varies by discipline, institution, and funder, and the distinctions between these terms are sometimes significant and sometimes superficial.
At TEDI, when we talk about co-production, we mean this:
The meaningful involvement of people with lived experience - people living with dementia, and those who care for them - in as many stages of the research process as possible, wherever appropriate.
This is not about compliance, or fulfilling a funder requirement. It is about doing better research, and doing research more justly.
What TEDI values in co-production
We treat lived experience as knowledge. People with dementia and unpaid carers bring something to research that cannot be replicated through training or academic expertise: a grounded, embodied understanding of what it is actually like to navigate dementia - its realities, its challenges, its moments of connection, and its complexity. That knowledge should sit alongside research expertise as equally valid, not subordinate to it.
A growing body of evidence supports this approach. Studies involving people with dementia in co-design processes - at all stages -consistently demonstrate benefits in both directions: for participants, through increased social interaction, a sense of being valued and understood, and the positive effects of creative engagement; and for the research, through richer insight, changed assumptions among researchers, and interventions that better reflect real life. Crucially, researchers have found that people with dementia can contribute meaningfully not only in the early stages dementia, but across the full progression of the condition - provided the methods and environment are appropriately adapted to people’s needs.
This means we do not expect co-production partners to take on additional research responsibilities unless they actively want to. Some models ask co-production contributors to learn research methods - like data coding, interviews, or writing. We do not make this an expectation or a requirement. What people bring is their lived expertise, and that is exactly what we are asking for. If contributors wish to engage more deeply with research processes, that is always welcome - but it is a choice, not a condition of involvement.
It also means co-production partners should be properly recognised and paid for their time. This is not a courtesy. It is an acknowledgement that their contribution is real, valuable, and irreplaceable - you can find specific guidance on payment rates form NIHR here.
Co-production in the context of dementia
We want to be upfront about the ways co-production in dementia research asks something significant of people. Inviting someone to share their experience of living with dementia, or of caring for someone they love, is asking them to revisit difficult and often painful territory. Researchers should hold that reality carefully.
That means: putting no undue pressure on partners. Giving clear information and realistic expectations from the outset is essential. Flexibility in how people contribute and genuine attention to whether people are doing okay — not just as contributors, but as people is also key, especially during times of change or transition which are common in dementia.
Our hope is that taking part in co-production is genuinely worthwhile for everyone involved. That it is a source of connection and meaning - and of the knowledge that someone’s lived experience is actively improving the lives of others, now and in the future. Good co-production should be reciprocal and rewarding.
When should co-production begin?
As early as possible.
People with lived experience should ideally be involved from the planning stages of a project: contributing to the framing of research questions, informing study design, shaping recruitment approaches, engaging with emerging findings, and being part of how results reach the world.
Across the life of a project, co-production partners should:
Be kept informed at each stage, in plain and accessible language
Have clear expectations set - about time, about what is being asked of them, and about what will and won’t be within their control
Be able to see how their contributions have shaped the work - what changed because of them, and where something couldn’t change, why
Have flexible options for how they engage, recognising that life - and dementia - is unpredictable
Timely feedback is not a nice-to-have. It can distinguish genuine partnerships from tokenism.
Further reading and resources
The following resources are recommended for researchers and teams developing their co-production approach. They share a broadly practice-oriented focus, making them relevant across a range of disciplines and project types.
From Participation to Power: Rethinking Co-creation in Dementia Research
Messiha, Co-Production Collective, 2025
A concise and sharply argued piece that asks whether what we call co-creation in dementia research is actually delivering shared power — or simply stopping at consultation. Drawing on a review of community-based projects, it identifies the gap between participation in name and meaningful involvement in practice, and makes a clear case for bringing communities in from the very beginning, making power visible, and prioritising relationships over outputs. A useful framing piece for any team starting to think about their approach.
Dementia Enquirers Gold Standards for Co-Research
Innovations in Dementia, 2023
Developed by and with people with dementia, this framework sets out eight standards for meaningful co-research — from negotiated roles and dementia-appropriate adjustments, through to people with dementia taking the lead in their own research. An excellent starting point for any team working in this space, and a useful reference throughout a project’s life.
Dementia and Co-creation: A Practical Guide to Designing Products and Services
Alzheimer’s Society, 2022
A thorough, accessible guide to co-creation in a dementia context, produced by the Alzheimer’s Society Innovation team. It covers principles, methods, and practical guidance across all stages of a project — from recruitment and ethics through to feedback and endings — with worked case studies and a co-creation checklist. Particularly useful for teams developing products, services, or technology-focused interventions.
The Smarties Guide to Co-Production
The Smarties Research Group, University of Edinburgh
Written by people living with dementia, this concise guide offers direct, experience-led advice on involving people across all stages of a project. Practically focused and written in accessible language, it is a useful complement to the more framework-oriented resources above.
Co-designing with People with Dementia: A Scoping Review
Wang, Marradi, Albayrak and van der Cammen, 2019
A peer-reviewed scoping review of 26 studies examining the involvement of people with dementia in design research. It demonstrates that co-design is beneficial for both participants and the design process, identifies a growing trend towards involving people in moderate and severe stages of dementia, and provides a practical consolidated list of tools and recommendations categorised by dementia stage. Useful for researchers seeking an evidence base for their co-design approach, and for those adapting their methods to work with people at different stages of the condition.
Materializing Personhood: Design-Led Perspectives(Full text available on request)
Rita Moldano Branco, 2020
An academic perspective on design-led research with people with dementia, grounding practice in Tom Kitwood’s personhood framework. Useful for researchers and designers thinking through the ethical and methodological dimensions of their work, and the relationship between design practice and person-centred care philosophy as a step-by-step process.