Through different eyes: a new persepctive in dementia research
Molly Murray is a PhD researcher from the University of the West of Scotland and Alzheimer Scotland’s Centre for Policy and Practice (ASCPP). Stuart Dougall is a member of the Scottish Dementia Working Group (SDWG) and The European Working Group of People with Dementia (EWGPWD). Together, they recently published a collaborative article in the research journal, Sentio. This blog, co-written by Molly and Stuart, outlines the focus of this article, extending readers here to reflect on the importance of including individuals with lived experience in dementia research.
How we came to write this paper (and why it mattered to us)
The aim of Molly’s PhD project aims to explore experiences of navigation in adults with dementia under the age of 65 (young-onset dementia). Stuart, as a member of two dementia-led campaigning groups for people living with a diagnosis of dementia, has been working closely with Molly since September 2024 to provide invaluable input to Molly’s research.
In 2025, Molly and Stuart responded to a call by an academic journal in interdisciplinary, social science research called Sentio. They invited authors to consider the relationship between the social sciences and reality; to consider why research so often feels disconnected from the people and experiences it is meant to represent.
The prompt from Sentio resonated strongly with Stuart and Molly as they both recognise the importance of social science because it asks researchers to rethink what we value as “good” research. And dementia research, as part of social science research, is increasingly shaped by the voices of people with lived experience. These voices offer insights that researchers alone cannot provide, whilst also challenging exclusion and leading to meaningful knowledge that better reflects real experiences. However, it’s important that this contribution is not tokenistic. Too often social science continues to include people with lived experience as contributors as a tick-box exercise and fails to consider the true value of these contributions.
Social science also helps us to understand dementia through a human rights lens. People living with dementia are citizens with rights – to be heard, to participate in decisions that affect their lives, and to remain active contributors within their communities. From this perspective, involving people with dementia in research is not only about improving the quality of research. It is also about recognising their expertise and supporting their rights to engage in life in ways that are meaningful to them.
The aim of Molly and Stuart’s article was not only to show how involving people with lived experience improves dementia research, but to reflect on what this process offers researchers and what it can mean for the individuals sharing their lived experience. They also wanted to co‑reflect on those benefits together.
“The cream always rises to the top”: photo of a reflexive crochet piece created by Molly, to capture Molly and Stuart’s collaboration. A description can be found at the bottom of this page, after the blog.
What changed because of Stuart’s involvement in writing the paper?
A useful question Molly and Stuart kept returning to was, what would this paper have looked like without lived experience in authorship?
Without Stuart’s involvement, the article would have reinforced familiar academic assumptions, for example, that researchers can adequately interpret experience of people living with dementia from a distance. Those assumptions were repeatedly challenged throughout the writing process. Additionally, authorship signals whose knowledge counts. By co‑authoring the article, both Molly and Stuart could make clear the limits of researcher‑only perspectives and show the benefits of collaboration in ways that would not have been possible otherwise.
Stuart’s contributions shifted the focus from abstract endorsement of involvement to concrete insight into what collaboration feels like and what it can offer for the person living with dementia. If we want to talk seriously about the benefits of involving people with lived experience in research, then those voices need to be present in authorship itself.
Acknowledging the emotional and relational dimensions
Collaborative working is emotional and relational. It requires trust‑building over time, attention to power dynamics, and moments of vulnerability on both sides. For Molly as a PhD researcher, there was a tension between developing independence within academic expectations and committing to a genuinely shared process. Being open to sharing power and acknowledging uncertainty were key parts of that balancing act.
These relational elements are often invisible in published research, yet they are central to meaningful involvement. Ignoring them risks reducing lived experience to a methodological add‑on rather than recognising it as a form of expertise shaped through collaboration.
“The image representing the back-and-forth communication and sharing of power; co-created by Stuart and Molly.
An invitation to think differently
Molly and Stuart end the article with an invitation, and we want to extend it here. Why is it still unusual for people with lived experience to be recognised as experts within research? We would also add, who is missing from authorship in your field?
Involving people with lived experience is not always easy. But it is transformative. It challenges assumptions, reshapes questions, and brings social science closer to the realities it seeks to understand. For example, in developing participant information materials, Stuart contributed practical suggestions, including prioritising icons over text and reducing page length, to enhance clarity and accessibility of the study aims. Stuart has also supported Molly in reflecting on and interpreting interview data through providing alternative perspectives from a lived experience lens.
Beyond this, the relationship is mutually rewarding. For example, for Stuart, active involvement in research offers a meaningful sense of purpose and reinforces feelings of self-worth. For Molly, Stuart has been a consistent source of moral support and has inspired her developing research interests.
Image representing ‘shared voice’; co-created by Molly and Stuart.
The hope is that this work encourages researchers, practitioners, and readers to rethink not only who research is about, but who is recognised as producing knowledge – who does the research process involve and who is it written with?
The full article can be found here
You can contact Molly or follow her work here: @mollysmurray | Linktree
Find out more about the Scottish Dementia Working Group here
Below is a description of Description of Crochet Piece by Molly Murray: “The Cream Always Rises to the Top”
I started by crocheting two ‘paths’. One path is worked with pale blue yarn and a variation of stitch types and patterns to highlight different elements of my path to this research – university, family experiences of dementia, research experience, practitioner background. I then took the cream yarn to highlight the contribution of the stories and experiences of people living with young onset dementia that I have heard throughout my work as a practitioner. The idea is that it carries multiple layers of knowledge in the context of understanding dementia.
The other path uses a cream yarn. It uses very loose and more textured stitches, including pronounced bobbles, creating an uneven, tactile surface. The looseness allows the fabric to shift, reflecting embodied and experiential knowledge as something lived through the body. Bobbles appear intermittently rather than regularly, marking moments of heightened significance and key life experiences that stand out from the everyday flow of living. These raised stitches interrupt the surface, drawing attention to events that are remembered.
I used a light blue and a cream because I wanted to use distinct but soft, complementary colours to mirror how Stuart and I bring different perspectives and distinct voices but can work together in harmony. I used the light blue to represent the researcher, who leads the work of this project, while cream represents lived experience, shaping the research in subtle yet meaningful ways. The dominance of cream reflects how the insights and perspectives of those with lived experience influence the questions we ask, the priorities we set, and the interpretation of findings, even whilst I’m steering the overall direction.
As the piece progresses, the two paths begin to interact. Stitches are alternated across the boundary, and some stitches are shared, causing the textures to subtly cross into one another. The distinction between the paths remains visible, but neither stays fully contained; each begins to shape the other.
Towards the centre, the fabric is worked as a single piece, more stable than either original path as represented using a single tight crochet stitch. There are parts of the centre where there is more cream or more pale blue or where they are completely intertwined to highlight the balance and sharing of power, where someone’s input may be more or less central at different points throughout the research process. The centre is also longer as this journey of working together continues. The interweaving of colours shows how different ways of knowing can negotiate space, influence and shape one another, and co-produce something new, while still leaving traces of their distinct origins.