Monitoring research

It can be easy for researchers to become distanced from the realities of the conditions they study. Between attending conferences and writing academic articles, ideas can get trapped within the research community, without input from people with lived experiences. 

Alzheimer's Society has long been a pioneer in involving people affected by a condition in research about it. A key part of this is the monitoring of research projects by our Research Network volunteers, people who have all cared for someone with dementia or have dementia themselves. Monitors meet every six months with researchers to get an update on how the work is progressing and to offer their expertise. 

This provides many benefits to researchers. The most obvious example is to remind them of what their research is for.

Frank, a Research Network volunteer, says,'The main benefit I have found is that it has emphasised to researchers the critical importance of the work they are undertaking to society as a whole. This happens as a result of sharing a little bit about my own story in the first meeting at the start of the project, and linking it in some way to the work involved.'

As one researcher, Dr Sean Sweeney from the University of York, says, 'I feel it gives us focus and brings us back to the critical questions, rather than (as academics tend to) getting distracted with interesting areas of biology. The meetings also remind us very clearly why we are doing this work.' 

Dr Gayle Doherty from the University of St Andrews summarised this by comparing the experiences of the monitors to the disease-causing proteins that she studies, 'The monitors give an articulate voice to the patients and help us remember that Alzheimer's disease is more than just amyloid beta and tau.' 

As well as telling their story, monitors can also provide a fresh pair of eyes for research projects and insight into recruiting volunteers for studies. 'An example of this was pointing out the potential difficulties of repeated visits and travel costs and difficulties for the person with dementia. This led to a rethink,' says Julia, another member of the Research Network. 

One researcher commented that monitors 'have been really helpful in providing real context to questions we have had about certain practicalities in how to deliver studies, and what would be viable and what might be found more challenging for potential participants.' 

The monitors' exposure to several different areas of research puts them in a unique position. 'I have been often impressed by the level of knowledge and clear understanding of network members about key topics in the field, including my own research,' says Dr Mario Parra from the University of Edinburgh. 

Monitors can also provide support to researchers in their career path. One monitor received a letter from a PhD student saying, 'I really appreciate meeting you and all of your input on my project; it really helped me decide that a PhD in dementia research was the way forward for me.' 

'The interactions with our network members are rich, both from a social and a scientific perspective. I have become more confident in sharing my results and doubts, more skilful in taking suggestions from and conveying key messages to lay audiences,' says Dr Parra. 

Input from the public can help researchers to place their work in context, take a fresh look at their approach and develop their career. Involving people with a lived experience of dementia is not just about doing the right research, but making sure research is done in the right ways.