In this blog, nurse researcher Allison Bentley shares her journey from an ARC East of England (ARC EoE) Fellowship in 2016 to working as a palliative care research associate within ARC EoE. Allison’s research has focused on improving quality of care for people with Lewy body dementia, understanding their needs and physical symptoms.
I was a community nurse for many years delivering nursing care to people in their own homes and care homes. During this time, I developed a special interest in palliative and end-of-life care, particularly for those with long term conditions and dementia. I saw a need at the time to bridge the gap between primary care and specialist and palliative services. So, whilst working as a district nursing sister, I completed a Masters in palliative care at Warwick University with the aim of improving support and care for those wanting to die at home.
These skills were useful for my role as community matron. To gain more research experience, I joined a large NIHR funded project as East of England study co-ordinator, working with Professor John O’Brien and his team to look at improving the diagnosis and management of Lewy body dementia.
During this time, I gained funding to complete my PhD exploring experiences of living and dying with Lewy body dementia. Most recently, I have worked as lead research nurse for Lewy body dementia projects at Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) and spent a year working clinically with the Trust’s local Parkinson’s nurse community team. In May this year, I became a research associate with the palliative and end of life care group within the department of public health and primary care at Cambridge University.
Applying for a research fellowship
Whilst working for the Lewy body research team I was struck by the amount and severity of the physical symptoms that were reported. This form of dementia has Parkinsonian symptoms and as a community nurse, I was interested in how this was affecting people I worked with in their everyday lives. At this point, I hadn’t yet conducted my own research study, and wasn’t sure how to progress this research idea that was forming, but my managers encouraged me to apply for a fellowship with the ARC East of England (at that time it was the Collaboration for Leadership in Applied Health Research and Care - CLAHRC).
During the year (2016-17) I worked on the fellowship project, I established a patient and public involvement group with CPFT service user and engagement support. The group worked on the study design, helped with the analysis of results and dissemination, and we gained ethics approval to interview 10 people with Lewy body dementia and 12 family carers. With everyone’s help, we managed to reach the preliminary analysis stage within the year.
The study findings highlighted that bowel and bladder problems, swallowing, dizziness and falls were troublesome for people with Lewy body dementia but were not necessarily considered part of the condition by clinicians and families. At the end of the project, I worked with CPFT’s service user and carer manager and a family carer to apply for an Alzheimer’s Society dissemination grant. Together with the family carer, I presented a poster at the Alzheimer’s Society conference. This led to the Nursing Older People journal contacting me to work on an article to share how nurses and people living with dementia can work together to conduct simple, research studies that inform services, now published online here.
Talking to people with Lewy body dementia and their families in the interviews for the ARC fellowship highlighted that some people wanted to talk about what their future may look like, how long they had to live, and what they may die of. This posed further research questions about the experiences of people living with LBD and what their palliative care needs might be.
During the fellowship programme, I enjoyed meeting other fellows to share experiences. Having the time to really refine and develop the research aim and questions, as well as working with people living with Lewy body dementia and family carers throughout the project, was extremely valuable and enjoyable.
Allison Bentley, ARC EoE researcher
The teaching and coaching on the programme gave me the confidence to conduct a small research project of my own with the support of the ARC supervisors.
Increasing knowledge and support to help patients and families
It is known that Lewy body dementia as a condition is often under diagnosed, and diagnosis can be difficult and protracted. In addition, people living with Lewy body dementia can have complex symptoms which affect their ability to maintain their social networks and hobbies. I feel it is really important to involve people with Lewy body dementia and families in directing and shaping the research of their lived experiences and I’ve tried to do this as much as possible with their guidance. People with Lewy body dementia and families have often said to me that health care professionals don’t always know about Lewy body dementia and how to help support them, particularly around medications.
To address this need, I have been helping to set up a community of practice in partnership with the Lewy Body Society. This community of practice aims to bring together health professionals with a shared interest in Lewy body dementia to develop and share resources and knowledge. It launched with a webinar on 5 July 2023 and the recording is available to watch on YouTube below:
ARC East of England support and future research projects
The ARC EoE fellowship gave me the skills and a boost to apply for scholarships and grants to complete a part time PhD with Lancaster University. This included a Florence Nightingale research scholarship, a Lewy body society grant, and a strategic research grant from CPFT. Support from ARC EoE included practical training in research methods and skills development, opportunities to network and disseminate research through posters and presentations, which provided a great foundation to help me achieve a postdoctoral post in my specialist research area.
Currently I am setting up a project to explore General Practitioners’ views on their current and future roles in palliative and end-of-life care. This will be a national qualitative study in preparation for a larger survey in the UK.
My future research will investigate the extent and type of evidence available to support end-of-life prescribing practices for people with Parkinson’s and Lewy body dementia. This will provide an overview of the current available literature within the context of primary and community care services to inform best practice. I feel this is important as end-of-life prescribing can be particularly challenging for clinicians and worrying for people living with Parkinson’s and Lewy body dementia and their families.
Allison’s top tips for anyone considering a fellowship application:
- Start small - you can always build on your ideas and findings later.
- Practice writing for publication – to share any findings from MSc projects, ARC fellowships, literature reviews, case studies or opinion pieces.
- Work with your local librarians (your new best friends!) – they provide a wealth of experience and training you will find invaluable throughout your research career.
- Look for small grants that will pay for your protected time (and guard that time!). Time is always the challenge when working in a clinical role as well.
The NIHR ARC East of England fellowship programme offers health, social care, and third-sector professionals an opportunity to develop research and implementation skills. Find out more and apply by Thursday 30 November.