Co-creating and co-delivering dementia education at Bradford: Understanding the me in dementia
Jones et al (2025) Co-creating and co-delivering dementia education at Bradford:
Understanding the me in dementia. Journal of Dementia Care 33(2) 22-26.
A team of two academics and 22 experts by experience came together
to co-create a new postgraduate course for professionals. Danielle Jones and colleagues describe the process and the rewarding results for all involved.
Dementia education in universities is being taught in different ways, depending on the course and institution. Some undergraduate healthcare programmes include dementia-related topics, and a growing number of postgraduate courses in the UK focus specifically on dementia. Internationally, the need to improve dementia education and training has been recognised by organisations like the World Health Organisation (2017). In the UK, national guidelines, such as those from the Care Council for Wales (2016), the Health & Social Care Board (2016), the Scottish Government (2021), and Skills for Health (2018), have also pointed out the importance of improving dementia education. However, it is still uncertain how much these guidelines have affected the quality of dementia education within universities.
To address this, a group of UK academics from the Higher Education Dementia Network (HEDN) created a five-year plan to improve dementia education and pedagogic research. One key part of this strategy (Strategic Area 4) focuses on involving people living with dementia in both the design and teaching of university courses on the subject (HEDN 2022).
Research shows that involving people with dementia in the delivery of education has a positive impact on students’ attitudes and benefits people living with dementia too (Cashin et al 2019; Williams & Daley 2021). While people with dementia have been involved in delivering courses for years (Mustafa et al 2013; Barbosa et al 2019), their input in creating courses has received less attention.
Summary
Dementia education in universities is growing, but people living with dementia have rarely been involved in creating these courses.
At the University of Bradford, a new approach was taken to change this. A team of two academics and 22 people living with dementia came together to work in partnership to create a new postgraduate course called “Understanding the me in dementia”, designed for professionals who work with people with dementia.
This course was co-created through a series of online workshops, with the experts by experience taking a lead in designing all aspects of the course, including the title, topics, learning activities, and assessments. The experts were also involved in teaching and marking, sharing their real-life experiences of living with dementia. Students who took the course said that hearing from people with dementia made the learning more meaningful and helped them improve how they work with people with dementia in their health and social care jobs.
The project has been praised and has won awards for its innovative approach, showing that involving people with dementia in creating education can make a real difference to everyone involved. This project shows that working together with people who have lived experience of dementia can make education effective, authentic, and impactful.
The Centre for Applied Dementia Studies (CfADS) at the University of Bradford is this year celebrating 20 years of delivering high-quality postgraduate dementia education and is committed to co-creation, where academics and experts by experience (in this case, people with dementia) work together in partnership. Although people with dementia had already helped teach courses and assess students work at the CfADS, the team realised that, like many other institutions, they had overlooked involving them in creating the courses. To address this, academics at the CfADS worked with people living with dementia to create the UK’s first higher education dementia module that was co-created from the beginning by people with dementia, titled “Understanding the me in dementia”.
This collaboration is an important step in making dementia education more inclusive, meaningful, and effective for both students and people living with dementia, and it reflects a broader commitment to listening to those with lived experience in shaping educational programmes.
Author Details
All at the Centre for Applied Dementia Studies, Faculty of Health Studies, University of Bradford, Bradford, BD7 1DP: Dr Danielle Jones, Associate Professor in Dementia Studies.
Email: dkjones1@bradford.ac.uk
Clare Mason, Assistant Professor in Dementia Studies.
Jacqui Bingham, Expert by experience.
Michael Booth, Expert by experience.
Ronald Amanze, Expert by experience.
Allison Batchelor, Expert by experience.
Michael Andrews, Expert by experience.
Anne Marie Norris, Expert by experience.
Frances Issacs, Expert by experience.
Dr Ian Davies-Abbott, Assistant Professor in Dementia
Studies.
Dr Felicity Slocombe, Lecturer in Dementia Studies.
Dr Ana Barbosa, Assistant Professor in Dementia Studies.
Methods
Co-creating the education: The postgraduate dementia education module was co-created by a team of two academics and 22 people living with dementia. The academics were Danielle Jones (a dementia educator with 11 years’ experience of creating and delivering dementia education) and Clare Mason (lead for Public and Patient Involvement within the CfADS with over 20 years’ experience working alongside people with dementia). The module team engaged in 19 online group workshops (between January 2022 and September 2023), creating the module outline curriculum, the title, learning outcomes, assessment strategy and assessments, and all learning activities and resources. This was compiled within the module’s online study guide by Danielle Jones, and was reviewed, edited and approved by the team. The experts by experience were offered alternative methods of participation, which included, but was not limited to, email, WhatsApp, post, one-to-one meetings or by providing feedback on written materials. Between workshops Mason and Jones provided meeting reminders, notes and updates (in both written and video/audio format).
Teaching: The module teaching commenced in September 2023. It is the first module delivered on the MSc Advanced Dementia Studies programme and can also be taken as a single module. The programme/module is designed for health and social care professionals working with people living with dementia, to enhance their knowledge and understanding of person-centred dementia practice. The experts by experience team co-delivered the teaching on the module and were designated module tutors. The experts by experience provided written/verbal feedback to students on their learning activities and online discussions, engaged in two real-time online tutorials (delivered on Zoom), and co-marked assessments.
Research: We aimed to understand the experiences of both people with dementia, as well as the academics, throughout the process of co-creating and co-delivering the education. The team completed reflexive diaries (both in writing, and video/audio reflections), and engaged in a focus group about their experiences (co-facilitated by Frances Isaacs; an expert by experience). Individual feedback was collated through other methods, including during conference presentations and talks, and over email and WhatsApp. Furthermore, following the module’s delivery in September 2023 – January 2024, we collected information from students about their experience of receiving the education via an online questionnaire. Ethical approval was granted by the Chair of the Humanities, Social and Health Sciences Research Ethics Panel at the University of Bradford on 02/12/21: E948.
Key points
- The ‘Understanding the me in dementia’ postgraduate dementia education module was co-created by a team of two academics and 22 people living with dementia (experts by experience) across 19 online workshops (between January 2022 and September 2023). People with dementia were put in the driving seat of dementia education design.
- Co-creating and co-delivering dementia education in partnership with experts by experience promotes a sense of meaning, value, purpose and pride for those involved. The partnership afforded the group fun, friendship, mutual respect and support.
- Co-creation of dementia education needs to be fully resourced, both financially and with time. Co-creation is “certainly not the easy option” (Julie Hayden, expert by experience) and requires preparation, flexibility and adaptability.
- Meaningful and comprehensive co-creation is essential for the authenticity and translatability of education to practice. Combining lived and learned experience should be a core part of curriculum design and delivery, leading to the enhancement of quality dementia education. Students reported that the involvement of the experts was an invaluable part of their learning and enabled them to enact changes within their care practice. One student reported, “I have put my learning into practice, and it was rewarding to see the positive changes in my techniques”.
Results
Of the 22 people living with dementia, 12 attended regular (monthly or bi-monthly) online workshops, five participated using other methods (including providing feedback on written materials and engaging in one-to-one meetings), and five dropped out due to ill-health.
The co-creation team were diverse in gender (10 women, seven men), country of residence (11 in England, four in Scotland, one in Wales, and one in Northern Ireland), living in both rural and urban areas, ethnicity (White British, South Asian, Black British), and dementia type (Alzheimer’s disease, Vascular dementia, mixed dementia, young onset dementia, posterior cortical atrophy dementia). Two members of the team were from the LGBTQIA+ community. This enhanced representation of diverse experience.
Reflections from experts by experience: Overwhelmingly the experts enjoyed being involved and reported that their involvement gave them meaning, purpose and a sense of pride. They informed us that they felt listened to, respected and their experiences valued:
Top tips from experts
Tips from the experts by experience for academics wanting to co-create dementia education:
· Arrange an initial ‘meet and greet’ session designed to enable group members to get to know each other. This helps to build rapport and create a safe environment in which people feel comfortable to share their personal experiences. Creating a shared space where relationships can develop leads to enhanced engagement. Ronald Amanze (expert by experience) reported, “formality can be off putting to people opening up…this group enabled us to open up through the enjoyment of moments of laughter which really made for meaningful conversations”.
· The academic partners need to send updates and reminders between sessions about the progress of the work (using multiple methods, depending on the needs and preferences of the individuals involved, and this could include both video messages and in writing), as well as reminders about upcoming workshops including the agenda. These reminders help people to feel confident, be organised and engaged. Ensuring the Zoom link is re-sent immediately before the meeting, and highlighted in the email, helps people to attend with ease.
·The academic partners should seek and listen to feedback from experts by experience about challenges they may face during the sessions and make changes to improve processes in a timely manner. Constant
feedback on the successful implementation of those amendments should be sought to ensure they align with the original suggestions for improvement.
· Work in small groups (if online using breakout rooms), feeding back to the bigger group at the end. Working in small groups means everyone gets a chance to speak and not have to wait as long for their turn. Full team feedback is then important to develop that shared understanding but also to discuss topics which needs developing or clarifying.
· In addition to attending the workshops, alternative methods of involvement should be offered, such as providing feedback on written materials, 1-2-1 discussions, or contributing over email. This affords flexibility and opportunity to participate.
· Co-creation requires a change in perspective. Do not engage in co creation because you must, but because you believe it is the best way to work. Do not view it as ‘us’ working with ‘them’ but working in true and equal partnership. Julie Hayden stated, “It is only by the weaving together of learned and lived experience that true quality care can be achieved”.
Julie Hayden: I feel very proud to have been part of this project…I, along with many, started my dementia journey feeling on the rubbish tip of life. I certainly never thought I would find myself in a university again.
Maqsood Quereshi: We had a platform where our contribution was acknowledged, it was appreciated and we were kept up to date all the way through… Been kept up to date shows that whatever we are saying is being heard, listened to, and actually makes a difference.
Jacqui Bingham: They listened to both sides, the people in the box and the people that are out the box. And everybody gets a chance. And that’s what I love because we are all valued…and I feel like I’ve been listened to. I’m appreciated for who I am.
The experts by experience group valued the organisation and the adaptability of the academic partners to improve process when challenges were identified:
Julie Hayden: Dee [Danielle] and Clare have encouraged constant feedback with regards to the challenges we have found with the work. And by acting immediately to the feedback they have then made the necessary changes in time for the next meeting.
The experts appreciated that they were put in the ‘driving seat’ of designing the education and setting the agenda to lead the work:
Michael Andrews: You could say we were actually running the thing because it was us that was picking the topics.
Ronald Amanze: I’ve had a lot of other experiences where it’s been so mechanical, it’s been so academic…and me feeling like they’re dictating the agenda to me, whereas in this situation…you didn’t come across as dictating the agenda to us or trying to assert your views. You always encouraged us to actually be us.
Furthermore, the experts by experience reported that they had fun and built friendships:
Frances Isaacs: Creating something between us has been a really rewarding and wonderful way of going about things. I’ve learnt a lot from everybody else…I just found the whole experience was something I was looking forward to every time. And I feel as though I am quite close now with all of you as a result of this.
Ronald Amanze: In the creation of the module…although it was a very serious subject we were addressing, the conversations were also conversations where we could also laugh and found reasons to smile about things”.
Reflections from academic partners: The academic partners acknowledged the amount of time that needs to be invested to do co-production comprehensively. It needs to be properly resourced, including time (both prior to and during the workshops), as well as financially:
Danielle Jones: I was initially over-ambitious in what I thought we could achieve in the hour and a half [online workshop]…I think I also underestimated how much time needs to be spent on things like doing the introductions.
Clare Mason: I felt anxious about the academic side of things, I knew we’d need to explain things and worried about the time this would take.
Danielle Jones: The second of our applications for funding has been rejected. It’s a good job the university is supportive but I know those funds will soon run out so we have to get thinking about where that money is coming from.
The academic partners noted that preparation and clear, ongoing communication is key. The realities of working life pose barriers which prevent thorough preparation, including other workload commitments, technological issues and personal circumstances. However, being adaptable and flexible in approach enables effective co-creation:
Danielle Jones: There were certain personal obstacles in the way, we’ve both just come back from leave which is always a bit disorienting and doesn’t enable you to prepare probably as well as we should have done, Clare and I didn’t have a pre-meeting to discuss how it was going to run like we usually do, and obviously with me having Covid my head was a bit foggy, and then additionally my computer wasn’t working so Zoom wouldn’t let me share my screen.
Clare Mason: I realised when sending information out about the work, such as updates or reminders of meetings, that people are involved in other things, and had occasionally forgotten or were confused about which project this related to. I found that using a consistent email subject heading, adding the group photo, and a heading in the body of the email, such as ‘this email relates to….’ helped members know what the email related to and prevented questions, which arose in the beginning, such as ‘which meeting was this?’. Preparation was key.
Like the experts by experience, the academic partners acknowledged the power of co-production for not only producing quality academic outputs, but fostering support and friendships:
Danielle Jones:The group brought a sense of light and fun to what can be very dark and serious experiences, such as stigma and discrimination. I feel so privileged and immensely grateful, not only to be working with
the group on developing the module but getting to be a part of those developing friendships, shared understanding and empathic support and respect between the group.
Clare Mason: It’s important we all feel equal. I always use ‘we’ when referring to the group, it’s all of us, not just the experts by experience as the ‘group’ and us as academic leads. I do this in writing as well, to highlight the fact that we had all worked on this together and that each contribution is valuable.
Reflections from students: The overall satisfaction rating for the module was 4.8/5. The students indicated that the experts’ involvement in the creation and delivery of the module enhanced its value and authenticity:
Student 1: I feel having people with lived experience co-write the module allowed for a better and real understanding of the module content.
Student 2: I think talking to the experts by experience was invaluable.
Student 3: The tutorials on Zoom were very informative, hearing accounts from the experts by experience is what makes this module special and engaging.
Students also indicated that they had translated learning into practice, making positive changes to their work with people with dementia in their health and social care roles:
Student 4: The material about engagement, human rights, language and culture has informed some of the strategies and materials I’m using at work to support staff working in care homes.
Student 5: I have found the contents of the module highly relevant to my practice. I have put my learning into practice, and it was rewarding to see the positive changes in my techniques. I certainly feel more confident when communicating with my patients and their carers.
Recognition of impact: The module team has been acknowledged for its co-creation work, receiving a commendation for Teaching and Learning Excellence at the University of Bradford’s Outstanding Achiever Awards 2024. The team were finalists at the Dementia Care Awards 2024, in the ‘Living well with dementia: co-production and partnership’ category. Furthermore, the team have been shortlisted for the INSIGHT Award 2024 category ‘Leading’ and for the Times Higher Education Awards 2024, for their contribution to the community.
Implications for practice
The experts by experience identified some top tips for academics wanting to co-create dementia education – see the box above.
Future plans
The module team have considered experts’ and students’ feedback from its first iteration and have made minor edits to the module. For example, extending the time allocated for real-time tutorials to enable further discussion between module tutors (including experts) and students. The module is now commencing its second year of delivery. The education team at Bradford are starting a project to co-design and deliver a module with carers of people living with dementia to enhance its education portfolio and complement our existing teaching.
Acknowledgements
We would like to thank all the individuals involved in this project for their time and commitment. We would also like to thank the University of Bradford for its financial contribution to support this work.
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We hope you enjoyed this free article from the March/April 2025 issue of the Journal of Dementia Care.
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