By Maria Caulfield
I joined the newly established NIHR Policy Research Unit in Dementia and Neurodegeneration (DeNPRU Exeter) in January 2024, shortly after completing my PhD at Bangor University. DeNPRU, led by the University of Exeter in partnership with the Universities of Bradford, Newcastle, Ulster, and the London School of Economics, conducts policy-relevant research to support national decision-making for the Department of Health and Social Care (DHSC) and its associated bodies.
The range of projects I have supported to date has been hugely rewarding, allowing me to learn more about non-dementia neurodegenerative conditions such as Parkinson’s disease, Huntington’s disease, and motor neurone disease. I’ve supported several projects aimed at shaping policies to better meet the needs of people living alone with dementia and reducing inequalities in care pathways for minority ethnic communities affected by neurodegenerative conditions. These projects have enhanced my expertise in different review methodologies and provided opportunities to engage with people living with neurodegenerative conditions, their families, and the professionals involved in their care. Through constructive discussions with colleagues, I continue to refine my ability to translate research findings into actionable policy recommendations. I am excited to present preliminary findings from our project exploring gaps between UK policy, guidance, and the experiences of unpaid dementia carers at the 37th Global Conference of Alzheimer’s Disease International in Lyon, France.
Over the years, the DeNPRU Exeter remit has increasingly shifted to address rapid evidence requests from DHSC, necessitating new collaborative approaches and focused strategies to synthesise research literature. Balancing the demand for timely, policy-relevant evidence with rigorous research has been a new challenge. We recently completed mapping of the applied research evidence landscape for Parkinson’s disease. This effort was aimed at aligning current research with the priorities of those living with the condition and identifying gaps that need attention for future research commissioning.
Being part of DeNPRU Exeter enabled me to apply for the NIHR Three Schools Dementia Career Development Award. My project combines realist review methods and Normalization Process Theory to understand how, for whom, and under what circumstances web-based interventions become part of unpaid dementia carers’ routines. The goal is to build my methodological expertise in realist approaches, which can offer important insights into how interventions in dementia care can be effectively implemented and sustained.
The next two and a half years promise new opportunities to collaborate closely with DHSC as they implement the NHS ten-year plan. I’m particularly excited about providing evidence to support new models of service delivery for neurology across England, focusing on equitable access and coordinated care.
This project is funded through the NIHR Policy Research Unit in Dementia and Neurodegeneration University of Exeter, reference NIHR206120. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.