By Kate Gridley, PhD student and researcher on the DETERMIND study
What’s it like to take part in a study like DETERMIND when you’re living with dementia? You might know from you own experience – either as a DETERMIND participant, or from supporting someone else to take part – but that information is very rarely pulled together to help inform future research.
That’s the aim of my PhD study linked to DETERMIND: to learn more about what it’s like for people with dementia taking part in the DETERMIND project so that we can improve future research practice. I’m particularly interested in what happens when a researcher asks people with dementia to answer a list of questions with fixed answer options, and what the experience is like (both for the people taking part and for the workers asking the questions).
Those questions are usually read out from a questionnaire by a research worker. The person taking part is then asked to pick an answer from a list of options. For example, they might be asked to say how much they agree or disagree with a statement, or how often they do or feel something. But what happens when a person finds a question confusing, or asks for help from the researcher? What if they get tired, or are interrupted? How do the researcher workers respond to the needs of people taking part? What could make the process better for all?
To answer these questions, I will be sitting in on some of the DETERMIND interviews to observe what happens. I will also be asking people who have been through the process: “How was it for you?”. Not everyone involved in the study will be invited to have an interview observed, as only some of the research workers are taking part, but if you are asked whether it would be okay to have someone sit in on your interview – it could be me!
This PhD study is designed to help improve, not only the way research is done in the DETERMIND study, but future research involving people with dementia. I will tell people about what I learn (including those who design and carry out dementia research) by writing articles and speaking at conferences. As more and more people with dementia are getting involved in research, it’s important that we share learning about effective ethical practices, and the experiences of those involved. Projects like DETERMIND are helping to make this aim a reality, improving dementia research for all.
Kate Gridley is a researcher for the University of York’s Social Policy Research Unit and is undertaking a PhD looking at the use of outcome measures in dementia research and the experiences of people taking part. For more information about this element of the DETERMIND programme please contact [email protected]