Kayleigh is a Facilitator, working on a project with Carers of West Lothian on improving ‘living grief’ support for people with dementia and their families. Below, she explores why co-production matters and how it has played a role in her project.
Living grief for carers of people with dementia is a nuanced experience that doesn’t follow a simple trajectory. Living grief reflects loss experienced, rather than anticipated, due to the nature of dementia. It’s a complex topic, often challenging to articulate, yet through conversation, we’re taking positive steps forward.
Developing with, not for, means co-production rightfully sits at the heart of this project. I find this to be a truly humbling and meaningful way to work; engagement is deeper, turning lived experience into powerful ideas or solutions. Creating pathways that elevate the work beyond a traditional project and towards one that has meaning, responds to carer needs and captures what truly matters.
Co-production requires time and attention; living grief explores a lot of ground, space is needed to reflect and understand experiences. Carers with lived experience, and the practitioners and volunteers who work with them, should feel heard, valued, and empowered to contribute. These were all important aspects from the start. Balancing emotive conversations with practical outputs, demonstrates the strength in co-creation and the equality of input.
In practice, this method of co-production is a fluid process. Supporting individuals to participate was key and was anchored by our goal of co-creating ideas and practical solutions that carers can lean on throughout their own journey. We identified core themes that reflect the reality of living grief. These themes are not simple observations; they form the structure of a new resource that we will create together. At this midpoint, plentiful evidence and insight allows the progression towards refinement, moving us closer to better supporting carers in prioritising their own wellbeing, whilst navigating the complexities of care.
As I reflect, co-production in this case is one example of carer’s lived experience and practitioner insights leading the way. The inclusivity and accessibility of outputs would be far less impactful or reflective of the reality of day-to-day caring without lived experience involvement. With this approach, we start to solve the problem of living grief being challenging to articulate and move towards bridging the gap in practical terms.