Over the past year, Allison (pictured) has been working with our Parkinson’s disease nursing team, bringing research to clinical practice in community services alongside her PhD study to explore lived experiences of Lewy body dementia.
Consulting experts by experience from CPFT’s Service User and Carer Research Group who help to shape our research, Allison involved people living with Lewy body dementia from the start of her project. Together, they designed her PhD research which was accepted by Lancaster University. Allison also won funding and support from a Florence Nightingale research scholarship and grants from the CPFT strategic research fund and Lewy Body Society, as well as a research fellowship with the NIHR Applied Research Collaboration (ARC) East of England (formerly CLAHRC).
Allison said: “Over my career as a community nurse and matron I developed a clinical and academic interest in supportive and palliative care for people with long term conditions, dementia, and frailty. I realised many of the patients on my caseload were in the last few years of life, especially those with Lewy body dementia - a condition with distinctive brain symptoms and physical, movement difficulties associated with Parkinson’s disease.
Whilst working on the national DIAMOND-Lewy study, I noticed they seemed to have reduced life expectancy, accelerated cognitive decline, increased hospital admissions, and more complex symptoms leading to poorer quality of life compared to other forms of dementia.
“When conducting interviews for my ARC fellowship research project, people with Lewy body dementia and their families discussed debilitating symptoms and they were worried about end of life and what that might look like, so I wanted to investigate their supportive and palliative care needs further.”
Allison conducted a longitudinal narrative study interviewing couples living with Lewy body dementia over six months, and found that a life story telling approach helped the participants to share their experiences and ensure their voices were heard.
Commenting on her findings, Allison said: “Social connectedness was important for the couples interviewed, and this continued over time as the disease progressed. Multiple losses of mobility, independence, voice, and continence occurred early on for the person with Lewy body dementia and were distressing and debilitating. These symptoms significantly impact the couples’ quality of life and ability to stay connected through all stages of the condition.”
“These insights are important to direct clinical care and ensure people get the right diagnosis and help to manage their symptoms with a supportive and palliative care approach. We need to optimise opportunities for improving and preserving physical, psychological, and social wellbeing to ensure people with Lewy body dementia can remain socially connected.
“Thank you to everyone who took part and made this study possible, to improve understanding and care quality in this area. I’m especially grateful to the Windsor Research Unit team and the Lewy Body Society, for all their support over the past six years!”
Allison has presented her initial PhD findings at the East Anglia Parkinson’s specialist nurse forum, alongside presentations from the Dementia UK national nurse consultants for Lewy body dementia and Professor John O’Brien, CPFT’s international expert in Lewy body dementia. Together with Kirsty Richards, Parkinson’s specialist nurse at CPFT, they have developed an information pack to help patients find support and advice.
Allison’s special interest in Lewy body dementia started in her role as study coordinator for the DIAMOND-Lewy study funded by the National Institute for Health and Care Research. (NIHR). During this project, she successfully applied for an ARC fellowship to study the physical symptoms of Lewy body dementia.
Read about Allison’s Lewy body dementia research with CPFT in these published articles:
- Bentley, A., Morgan, T., Salifu, Y., Walshe, C., 2021. Exploring the experiences of living with Lewy body dementia: An integrative review. Journal of Advanced Nursing. JAN.14932. https://doi.org/10.1111/jan.14932 (Appendix 1)
- Bentley A, Salifu Y, Walshe C. Applying an Analytical Process to Longitudinal Narrative Interviews With Couples Living and Dying With Lewy Body Dementia. International Journal of Qualitative Methods. January 2021. doi:10.1177/16094069211060653 (Appendix 14)
Allison has also presented her work at national and international conferences:
- International Mental Health Nursing Research Conference (June 2021)
Bentley A, Salifu Y, Walshe C. Narrative methodology: Analysing the personal experience of couples living and dying with Lewy body dementia. - International Lewy body dementia conference (June 2022)
Bentley A, Salifu Y, Walshe C. Experiences of living and dying with Lewy body dementia: a longitudinal narrative study.
