For Social Prescribing Day, the SPLENDID project team shares how the project is ensuring social prescribing remains effective and beneficial for people living with dementia and their carers. We hear from the public and patients involved in the study, showcasing their experiences and contributions in improving the outcomes for both social prescribers and individuals living with dementia.
Social prescribing plays a vital role in both supporting the healthcare system and improving people’s experiences and outcomes. Social Prescribing Link Workers offer support to individuals living with dementia and their carers by addressing non-clinical needs through community-based interventions, such as arts programmes, physical activity groups, and financial assistance. These interventions foster social engagement, reduce loneliness, enhance overall well-being, and alleviate the burden on primary care by freeing up GP’s time.
There is limited understanding of the uptake, cost-effectiveness, training, and overall benefits of social prescribing for people living with dementia and their families. The SPLENDID project aims to bridge these gaps by exploring how social prescribing can be optimised to ensure it is truly effective and beneficial for individuals with dementia and, from this, develop a tailored care pathway for people living with dementia.
Involving people living with dementia and their carers to shape the social prescribing pathway
Involving people living with dementia and their carers has been central to shaping the SPLENDID project. We have established two dedicated Public and Patient Involvement (PPI) groups: one for people living with dementia and another for their carers. Through regular meetings, their input is enhancing the quality, relevance, and impact of the research by identifying unmet needs, highlighting practical benefits, providing real-world perspectives, and improving the design of the SPLENDID intervention.
George, who is one of the PPI Leads and a co-researcher in the study, shares why he thinks SPLENDID is important and how he has found the research process: “Why is SPLENDID important? Social prescribing has the potential to unlock people’s lives as they come to terms with a dementia diagnosis. The best way to slow down the onset or deterioration of dementia symptoms is to keep active, busy and engaged socially.
"Social prescribing can provide a route into activity, if social prescribers understand the effects of dementia and the person with the diagnosis. Currently, there is little positive engagement with people living with dementia, and SPLENDID aims to find the evidence to create a model that works.
George, Patient and Public Involvement and Co-Researcher on the SPLENDID project
"Why am I involved? I enjoy research. I enjoy getting to understand concepts that are new to me and talking with researchers about how to carry out research about dementia. I have been diagnosed [with dementia] for over ten years now, and I am convinced that keeping my brain working, being engaged socially as well as academically, learning new things…these have helped my brain to keep working well.
George, Patient and Public Involvement and Co-Researcher on the SPLENDID project
George continues: "I have other symptoms of dementia, including memory difficulties, depth perception, reacting to loud noise, unsteadiness on my feet…but my creative and academic brain is still working really well.
"What I believe I and others can bring to research is the real-world experience of living with dementia. Researchers often have no experience of life with dementia, and they will not know much about the disease. We, with dementia, can tell them what will not work when consulting or working with people with dementia. We can warn them off long questionnaires and advise that PPI groups of people with dementia need to have fairly frequent meetings to avoid getting totally lost between meetings."
George, Patient and Public Involvement and Co-Researcher on the SPLENDID project
"Involvement as a co-researcher suits me very well. PPI consultation is better for some, but I can definitely say that my involvement in SPLENDID makes a big difference to my life. It’s about living as well as we can, doing things we enjoy, learning new stuff, being active.”
George, Patient and Public Involvement and Co-Researcher on the SPLENDID project
PPI groups should offer benefits both to the research project and to the individuals involved, whether through learning new skills, building confidence, or feeling like a valued member of the research team. To ensure their continued engagement, we hold regular catch-ups to understand how both of our PPI groups are finding the process. As we are now two years into the five-year project, it’s important to encourage and maintain their engagement with the project. At the same time, we recognise that life circumstances can change, and we remain flexible in supporting their involvement. Along the way, we have faced challenges such as managing expectations, reaching underserved communities, and addressing research terminology. However, by working closely with our PPI groups, we have been able to actively overcome these obstacles and keep moving forward.
Anne who is the PPI co-lead and a co-researcher shares her experiences of being an equal member of the SPLENDID project team: “My involvement with the SPLENDID project as PPI lead and co-researcher has given me a voice, and an opportunity to work with wonderful caring carers from all over the UK, as well as people living with dementia.
"I’ve gained knowledge, shared my experiences and most of all became confident to return to a workplace environment again due to working on the SPLENDID project. I had lost this confidence when I stepped away from my career to be a full-time carer and best friend to my mother.
Anne, Patient and Public Involvement Lead and Co-Researcher on the SPLENDID project
Anne continues: "Self-efficacy has been important for me, and also for the PPI carers group to find positivity from what can often be a negative journey with our loved ones, by seeing that our input will be of assistance to others in the future, and that they may have a more positive journey is inspiring.
"SPLENDID will not only be a gateway to social prescribing being available to all, but there will be many pathways and directions that will come with it to change the lives of the people living with dementia and their carers, new friends, inspiration, and a new social circle could develop in their lives.
Anne, Patient and Public Involvement Lead and Co-Researcher on the SPLENDID project
Anne continues: "Social prescribing is such a wide and varied opportunity of limitless events, this makes it so inclusive to all and will hopefully spark an interest to bring back their confidence, their happiness, and a more fulfilled life.”
So far, we have gathered evidence through interviews with social prescribers, people living with dementia, and their carers. We have found that the activities that social prescribing link workers recommend vary, but their work does highlight individual benefit. There is a lack of standardised training on how to best support individuals with dementia, which has led to inconsistent levels of support. Success often relies on the link workers being resourced and trained in dementia-specific care so they can effectively co-produce tailored prescriptions for people living with dementia. An effective social prescribing care pathway for people living with dementia should allow flexibility in how it is applied within different primary care settings. Whilst the approach can be tailored to the specific needs of different patients and healthcare environments, certain key elements should remain consistent to ensure high-quality, coordinated care.
What's next?
We have now almost developed a pathway that we can test in a feasibility study and, along with our PPI Leads and groups, are busy planning and preparing that study now. All being well, we hope to start recruiting people living with dementia to this part of the programme in the summer of 2025.
Learn more about the SPLENDID study by getting in touch at splendid.programme@uea.ac.uk.
