At SDRC we have been speaking to different people about their experiences of involvement in dementia research and are delighted to be publishing a series of blogs, sharing tips and lessons for us all. Our first blog in this new Research Involvement series is from Elaine Deehan, member of the National Dementia Carers Action Network (NDCAN). Read Elaine’s blog below and stay tuned for more on this topic in the coming weeks.

I am a member of the National Dementia Carers Action Network (NDCAN) Committee within Alzheimer Scotland.  We are a group of carers who campaign and raise awareness of the experiences of those who have dementia and their carers.   We often get requests to support research studies and to take part in research projects.  When an invitation was received from SDRC Research Theme Lead Professor Debbie Tolson to join a Research Group, I was intrigued.

Top tip: Knowing what to expect encourages people to be involved in research

As a Registered nurse I understand the importance of research.  I felt that this was something that would interest me, especially if it would improve the lives of those with dementia and their families.  Initially, I had no idea of what would be expected, I felt unsure of what I would be able to contribute.

Top tip: Becoming a co-researcher is a big step

Along with five other NDCAN members I went along to the first meeting. Not knowing what to expect it was refreshing to be part of what felt like a real conversation. We talked about how our various experiences with research and researchers had made us feel. We were encouraged to think about what we wanted from research and what we were interested in contributing. Gradually the idea of actually being researchers ourselves surfaced.

Early discussions introduced the possibility of undertaking a degree course, something I felt I did not wish to undertake as I still care for my mother and work.  I knew this would be too much.  However, it was felt that as a group of carers with lived experiences we could contribute to ideas for future research that are relevant today.  Anything which will improve experiences is very welcome. Over the course of a few more meetings we recognised that to contribute we needed to understand a little more about what research is and isn’t.

Top tip: A relaxed approach to learning helps us get to grips with new ways of working- such as scientific methods

 We shared ideas and the University Academics explained some of the different research approaches research theories and the pros and cons of using each. This relaxed style of learning about research is a good approach.

 We have spent a lot of time debating the subjects to be researched, drawing on our experiences.  We identified Research Topics that we all agreed on around Advanced Dementia.  It feels good to be able to be a part of that decision making and that the opinions of carers really do matter. 

I am now working alongside a Senior lecturer in Dementia from the University of the West of Scotland, who is also a Registered Nurse.  We have a mutual interest in our chosen research topic.  The hope is that we can apply for funding to take on a PhD student who will work along with us and that we learn from each other.  I am looking forward to working alongside an enthusiastic student and introducing them to NDCAN.   

Top tip: Research funders increasingly seek clarification within funding applications as to how people have been involved in planning and designing studies.

 At NDCAN we were new to the world of research and are learning all the time, for example, how funding is explored, the differing theories used- implications of each and the necessity of involving an ethics committee.  It is all fascinating and I thoroughly enjoy being part of this collaboration.  I feel honoured to work alongside experts in the field of dementia who really care about improving experiences and it feels amazing to have a chance to be involved.

At the SDRC, we’d like to thank Elaine for writing this blog and sharing her experiences. If you are an SDRC member and would like to contribute to this series, please get in touch.