Two perspectives, one project: reflections on working together.

What does meaningful co-production actually look like in practice?

In this blog, Johan Schoeman (MSc student) and Lynne Hagan (Expert by Experience, living with a diagnosis of dementia) reflect on working together to co-design a poster challenging stigma for the “Understanding the Me in Dementia” module - sharing how they collaborated at a distance, what they learned from one another, and why keeping lived experience at the centre matters.

What the project was

Within the MSc (Applied Dementia Studies) module; ‘Understanding the me in dementia,’ a requirement was for the co-design of a poster challenging stigma and for us to utilise AI in its production. From the outset I had to bear in mind that I was engaged in a postgraduate piece of work that anticipated dual perspectives: the academic, and the voice of a person diagnosed with dementia.

Lynne, the expert by Experience, and me, the student, were suitably matched to de novo create a poster. What really mattered in this process, was for the poster to hear and echo Lynne’s voice of lived experience.

How we worked together

Lynne and I live some 170 miles apart, so Zoom became our agreed communication medium. We unanimously agreed to supplement our contact through email correspondence. Lynne and I were open and transparent about our respective time commitments, including the submission dates for our poster.

In hindsight, one of our collaborative successes was our mutual enthusiasm to create the very best poster we were able to. In all we managed five Zoom meetings and a plethora of shared emails; at times we were corresponding up to three times a day. I pay tribute to Lynne for owning up to regularly burning the midnight oil whilst experimenting with AI versions of our poster design.

I own up to the fact that my knowledge of AI was rudimentary; Lynne on the other hand had some experience in using the tool. Whilst Lynne was wrestling with AI, I was tasked with translating Lynne’s negative experience at the time of her diagnosis into words voicing Lynne’s concerns. We were, and are justifiably proud of our end-product poster, graphics, and all.

Lynne and I have a rich experience in the field of medicine: Lynne was a qualified nurse, who worked in the pharmacological industry and latterly was a freelance trainer to health professionals. I, in turn was a NHS medical doctor caring for persons with dementia. In line with my medicalised approach to dementia care, and Lynne’s experiences following her diagnosis, we collectively agreed that the poster message was to be directed at medical students, raising their awareness of discriminatory language and behaviour when conversing with people diagnosed with dementia.

Johan’s reflection

In addition to our regular and rich exchange of ideas, thoughts, and insights on the co-design of the poster, Lynne was vocal about her experiences of being patronised, spoken to, not listened to, and dismissed by persons who should have known better. I listened and learnt from this intelligent, articulate, and wise person. I very quickly appreciated that to collaborate with Lynne, I was to smartly address any vestige of a power disequilibrium remaining from my medical role, adopt a sincere person-centred approach, and attune myself to the wisdom of a person who has the actual experience of dementia.

Lynne’s keen awareness of stigma, stereotyping and discrimination toward persons living with dementia became personal; in verse, Lynne tactfully crafted the observation that whilst she was very aware that I was actively listening to her, it wasn’t necessary for me to nod my head as frequently as I did. Lynne, in a late night musing, after a morning’s protracted and hurried question and answer email session on biopsychosocial matters, wrote that questions related to her earlier life, was a stark and sad reminder that her lived reality was in the here and now, some memories of the past, were either blurred or lost. Contained in this musing was for me the most salient learning moment of our collaboration.

I openly acknowledge a serious, conservative outlook on living my life, this together with some annoying neurodiversity traits. Being ‘tossed into the ring’ with a lady honed in interpersonal skills, cheeky wit, a disarming smile, and unfettered turn of phrase in conversations, could have rankled and discomfited me – it absolutely did no such thing. We became co-designers, equal, content, and proud in every sense of the word.

Lynne’s reflection

Throughout my personal and professional life, I have learned to listen calmly, speak directly and mistrust polarised positions. My background spans psychology and philosophy; training and practice as a nurse, including time as a psychiatric ward sister; fifteen years negotiating prejudice and glass ceilings within the pharmaceutical industry; and later independently teaching and training medical and allied professionals. Across all of this, one lesson has held firm: polarisation is rarely truth; it is usually simplification. There is almost always a third way.

That third way requires kindness, but not sentimentality. It means leaning into conversations with a genuine willingness to allocate a little time to the possibility of being changed by what one hears; not listening merely in order to interject, correct, or assume. This stance has served me well across hierarchies, disciplines … and disagreements.

Since dementia entered my life, that stance has become not only philosophical but necessary. Dementia has undoubtedly affected some of my capabilities, but at present it has not diminished my capacity to speak for myself and long may that last!

However what has become increasingly clear to me is how unusual dementia is, among medical conditions, regarding the extent to which the diagnosed voice is eclipsed by proxy voices.

Proxy language does not simply describe dementia; it actively shapes it. Proxy voices are often well-intentioned and caring, yet they frequently frame people with dementia as subjects for interpretation rather than equal participants in dialogue. The effect is subtly but persistently diminishing. We are spoken about, spoken for and too often spoken down to.

This is why Johan’s reference to transactional analysis (below) resonated so strongly with me. Much of what passes as compassionate communication with people with dementia actually mirrors a parent-to-child dynamic: mostly kindly and reassuring but fundamentally disempowering.

What is lost is adult-to-adult engagement; mutuality; intellectual respect.

What I particularly valued in this collaboration was Johan’s willingness to step out of role, resist professional reflexes and meet me where I was; not as a case, a narrative or a memory prompt, but as a thinking partner in the present moment. That willingness created the conditions for genuine exchange rather than managed dialogue.

Against that backdrop, this collaboration has mattered to me. Working with Johan has been a genuinely reciprocal experience: adult to adult; thinker to thinker. I have enjoyed the work immensely and benefited from engaging with his professional thinking, without my own voice being softened, translated or filtered through another’s authority.

That, to me, is not simply good collaboration; it is ethical practice.

Key takeaways

What Lynne and I would like to trumpet to those starting a partnership akin to ours, is this:

• Dementia is a diagnosis, akin to any other diagnosis; it is not the definition of ‘a person’ and what their capabilities might be. In contrast, the person living with the condition has values, charms, worth and abilities that relegate the diagnosis into an insignificant second place.
• In my reading for the module, I became aware that Lynne and I were unintentionally practising the Transactional Communication Model; in hindsight this was for me a game changer – read all about it!
• Humour having fun and learning from each other contributed to our co-design, bond formation and ultimately, its success.
• Where possible, build into the process of collaboration matching, a common social, cultural, or environmental contextual interest; it makes for a good, sound start in the partnership.
• If there was ever an alpha and omega in co-production with a person with dementia – it is without doubt, practising person-centredness.

Johan and Lynne’s collaboration is co-production in action - showing how our Experts by Experience don’t just contribute, but actively enhance the module and strengthen the quality, confidence, and creativity of our students’ work.

Find out more about our MSc in Advanced Dementia Studies, and the 'Understanding the me in Dementia' module, co-designed and delivered by 22 people with dementia.