How to inform service users quickly in dementia care
Nurses and people living with dementia can work together to conduct simple, research studies that inform services
Nurses, people living with dementia and their families can work together to conduct simple, pragmatic research studies that inform services
Allison Bentley, nurse researcher
'As a district nurse and community matron I had supported several families with Lewy body dementia. It was only when I took a research post that I realised people with Lewy body dementia had many distressing physical symptoms as well as memory problems. These symptoms had a significant effect on their quality of life.
'I hadn’t conducted my own research before, but I realised it was important to do a small study. I was also aware that people with Lewy body dementia and their carers had a wealth of experience and it was important for them to be involved in the research. I was fortunate to get a fellowship opportunity to spend one day a week on my own study to find out more about the effect of physical symptoms on people’s day-to-day lives.
'Patient and public involvement has become increasingly important in all kinds of health research in the past few years, including dementia. I hoped people with Lewy body dementia and carers could be involved throughout my study, so my first step was to contact Iliana, the trust’s service user and involvement manager. She put me in touch with four carers and we formed a carers advisory group.'
Chris Carling, carer representative
'The main reason I got involved is that I have a personal interest in dementia and how people live with it. I helped care for my parents who had dementia of different kinds at the same time. My mum had Alzheimer’s disease and my dad had vascular dementia. During the years I cared for my parents I became aware that there is no cure and little effective treatment. This made me feel helpless, so I wanted to use my first-hand experience in some way to help move research forward. What drew me to this study was the fact that it throws light on the day-to-day reality of living with Lewy body dementia.
'I remember our first meeting, shortly before participants had been recruited. We had detailed discussions about the wording of the leaflets patients would receive, the consent forms they would sign, the interview questions they may be asked. Our input was always from the perspective of the person on the receiving end: the patient or carer. How would differnt ways of expressing things come across to them?
'The research took the form of semi-structured interviews with patients and carers, and members of the carers advisory group have been involved from the start, using their various skills and time when they were able.
'Conducting a research interview was different from a clinical interview. The aim of the nursing interaction is to provide tangible assistance for patients and carers. I had to make a mental shift from someone whose expertise is being sought, to someone who is an enquirer seeking out the expert experiences of others. So, working with the group helped challenge my assumptions and ensure the research remained true to patients’ and carers’ needs.
'It was exciting to see the results forming as we worked on the analysis phase. From the interviews we could see that people with Lewy body dementia and carers reported that falls and dizziness, swallowing difficulties and bowel and bladder problems were the most common and troublesome physical symptoms.
'The research revealed that more tailored support is urgently needed to help patients and carers manage these distressing symptoms. We became passionate for the findings to be shared as quickly as possible.'
'As we had been working so closely together it seemed natural to apply jointly for an Alzheimer’s Society dissemination grant, which gave us £2,500 to spread the word by developing a poster, leaflet and video. At this stage two carers who were interviewed for the study became involved to help us identify practical advice for the leaflet.'
Watch: Physical symptoms of Lewy body dementia poster presentation
'Chris and I hope our experience will encourage more nurses, people with dementia and families to work together to conduct simple, pragmatic research studies, as this may better reflect realistic patient care and inform services more quickly.'
This research is funded by the National Institute for Health Research (NIHR)’s Collaboration for Leadership in Applied Health Research and Care East of England. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.
Find out more
- Watch: Allison and Chris on sharing the experience of investigating the physical symptoms of Lewy body dementia
- Watch: Discussing the collaborative process of involving carers in research on the physical symptoms of Lewy body dementia
About the authors
- Allison Bentley, nurse researcher, Cambridgeshire and Peterborough NHS Foundation Trust, Cambridge
- Chris Carling, carer representative, member of Cambridgeshire and Peterborough NHS Foundation Trust service user and carer involvement group