Sue Jones, PhD student on the NIHR research capacity in dementia care pilot programme (RCDCP): The psycho-social needs of carers
This time last year I hadn’t considered doing a PhD, I was enjoying my clinical work as an Admiral Nurse and only found the CLAHRC PhD opportunity when idly scrolling through Facebook. The University of East Anglia had posted the information and I was intrigued so followed the links. The more I read the more interested I became. This lead to me making some enquires and an appointment at the UEA to talk through the process.
From there the idea snowballed, speaking to patients and colleagues they were all very positive and I was carried along by their enthusiasm and so decided to apply. At the time I was working with a caseload of over 100 families all living with dementia, the carers I spoke to had lots of ideas about what research they would like to see done. Some of the more outlandish ideas included NHS funded Respite Cruises for families with dementia and the importance of answering the question, ‘Can cake help carers cope?’.
The application process went smoothly and much to my surprise I found myself with this amazing opportunity (and the mildly terrifying prospect) of doing a funded PhD. I went back to my carers and had more focused serious conversations about research in dementia care and how their needs could be better reflected in the services available. People identified that they feel able to find information about symptoms and treatments on the internet and everywhere they turn someone wants to give them a leaflet ‘that I will never have time to read’ but several said that no-one really wants to hear about the stark difficulties and struggles of the carer. As an Admiral Nurse much of my role was having those difficult conversations, enabling carers to ask the questions that worry them most; ‘what does dying with dementia look like?’ ‘How will I cope when he gets worse? or share the things they do not want to burden their family or friends with, the thoughts of guilt and feelings of distress.
Looking at the literature about carer burden, there are many studies which highlight the poorer mental health of carers in general and specifically for those caring for a person with dementia. There is also evidence of the positive aspects of caring that people identified such as a sense of purpose and feeling they are doing the best for their family member. My clinical experience has shown me some people will flourish in their caring role and face the challenges with resiliency, others will really struggle. Relatively few studies have explored suicidal ideation in caregivers but they have identified that as a population caregivers for people with dementia are more at risk than the general population.
So it is with some trepidation that I embark on this course to explore further the specific psycho-social needs of carers and whether existing services are able to support them with those more challenging needs beyond providing information and signposting. I would like to thank the CLAHRC for the opportunity and Professor Tony Arthur, Francine Cheater and Anne Killett at the UEA who are helping me find my feet as a researcher.
NIHR Research Capacity in Dementia Care Pilot Programme (RCDCP)
The NIHR Research Capacity in Dementia Care Pilot Programme is being delivered through the NIHR CLAHRC’s of which CLAHRC East of England is the lead site. The aim of the NIHR RCDCP is to develop new researchers in dementia care, who have the potential to become leaders in the field by offering fully-funded doctoral fellowships for nurses and allied health professionals working in dementia care.