By Rosalie Ashworth, Ph.D, lead author of Challenging Assumptions Around Dementia: User-led Research and Untold Stories

When we talk about dementia, we often start setting the scene with the statistics: in the UK only nearly a million people have dementia, and globally figures are estimated at around 55 million people. However, it is important that when considering these statistics we hold on to the fact that these numbers represent people who are living with a condition that currently has no cure and gets progressively worse as time goes on. As well as impacting the person with a diagnosis, dementia impacts on those around them, whether that is family, friends, colleagues, community members etc.

Over the past 15 years NRS Neuroprogressive and Dementia Network has been supporting clinical trials across Scotland. The number of research studies has increased over the years, but people with lived experience were taking part as ‘participants’ as opposed to being more involved in the design and development of research. My love of co-research led me to refresh the ‘patient and public involvement’ group to establish Partners in Research. The aims of the group were to have input into the work going on in the Neuroprogressive and Dementia Network, and to look at new opportunities. As part of the network’s strategy, lived experience was prioritised, and dedicated time and funding were put in place to make sure people affected by neuroprogressive disease were at the heart of our work.

In the early meetings with Partners in Research, two key issues were very apparent. Firstly, that people affected by dementia did not feel they had a suitable platform to be listened to. Secondly, that research around dementia was heavily skewed towards experiences of Alzheimer’s disease and there was no information available about other types of dementia (Alzheimer’s disease accounting for around 60-70% of cases). It was at this point that we established that before asking people with lived experience to get more involved in research, we needed to provide space for their stories to be told, as well as provide accessible information about dementia.

It still surprises me how little accessible information is available for people about a condition they are living with. People have a right to resources that help them to understand their experiences (if learning more about it is something they would like to do). In this sense, co-authoring a book with people living with dementia and people who are past or present carers has been an eye-opening experience: it has taught me a lot about accessible writing and the need to challenge my own understanding of dementia in order to explain it in a more simplified yet accurate way. By sharing our work in an academic space, but in a lay-accessible style, we hope to help academics and clinicians use language that is clear and easy for people to understand, as well as provide a resource for the general public.

Co-research and co-authoring with people affected by dementia involves a different type of dynamic, where I needed to reduce the power imbalance and create a space for people to share ideas and experiences as equals in the work. Taking this approach can leave you feeling quite vulnerable as a researcher, as it relies on you being willing to share some of yourself since you are asking others to do the same. It goes against all the traditional science methods I was initially taught, where researchers should be objective and prioritise eliminating researcher bias. The contrast is perhaps more stark when also working as a ‘study rater’ on randomised controlled trials, where every step within the research method is standardised and strict in its execution.

When the co-authors started writing together, we had planned to focus on the different types of dementia in order to increase awareness on them. Over the course of 6 months the group shared their lives with each other, laughed together, supported each other through loss, and celebrated the wins. The depth of their experiences led to the ‘types of dementia’ becoming a chapter of a book rather than the whole book. It grew ‘arms and legs’, with the focus becoming a broader selection of topics driven by their lived experience. Moreover, the co-authors found that writing together created a sense of camaraderie and purpose, and the feedback and sharing of their work provided much needed validation of their experiences and expertise.

Through this project we co-created a platform to share experiences, but as researchers we need to continue looking at how to make this space more inclusive both for dementia and other neuroprogressive conditions. Despite increased emphasis on co-research, there is still a lack of support for researchers embarking on this approach. It comes with challenges which are often not spoken about openly, and can lead to isolation. Therefore, as well as providing a more inclusive space for people with lived experience, Partners in Research want to explore how best to support other academics and health professionals engaging in co-research.

Dr Rosie Ashworth leads Partners in Research for NRS Neuroprogressive and Dementia Network, UK. As a research psychologist, Rosie is passionate about co-production, ethics, and actively involving people with lived experience in research. She is also the co-lead for ENRICH Scotlands ‘Patient and Public Involvement’ group RICH (Research in Care Homes) Voices, a Fellow with Advanced Higher Education, an advisor to the Dementia Enquirers, and a volunteer for About Dementia.