About the research
MRI scans are the best way to give a detailed picture of neurodegenerative illness, and they are not invasive. They enable the brain to be measured so that changes can be shown.
This project is a longitudinal study looking at how MRI scans can diagnose and then capture changes in the brains of people with frontotemporal dementia. The researchers will also measure changes over time, which they hope will allow them to develop ways to predict how symptoms and signs might develop.
There are comparative groups of people with Alzheimer’s disease and healthy volunteers. Establishing the most effective measures of brain changes will provide essential information for future research.
The research is funded by Alzheimer’s Society, with a grant of £221,000.
Preparing for PPI
Jason is a clinical neurologist and he sees patients and carers in his clinics. They have shared their symptoms and asked questions which have helped shaped a number of research studies. He and his team have set up and continue to run support groups for people affected by rare dementias. The groups meet quarterly. They ask these groups about research priorities, for their views on research design (including what they think is tolerable – e.g. how many scans people might agree to) and they tell people about research findings.
As a condition of the Alzheimer’s Society funding, Jason was allocated a team of Research Network Monitors – people living with dementia, their carers and family members who are interested in research. Monitors receive some induction training from Alzheimer’s Society.
Planning for PPI
One of Jason’s reasons for involving patients and carers was to make sure that research protocols would be acceptable. “If you want to design what is going to be a tolerable protocol to scan somebody, you can’t do that without having a very detailed understanding of what they would be willing to tolerate. Not just whether they could stay in the scanner for a long time, but more detailed issues. For example, some patients are very, very sensitive to noise. You‘ve got a noisy machine, so how are you going to get around that? So we needed patients to help us to design the study, to see if what we were planning was actually tolerable.” Jason sought the views of people in the support groups he runs about the study design.
Once the study was funded and Research Network Monitors had been allocated to him by Alzheimer’s Society, Jason sent the Monitors a BMJ review of frontotemporal dementia and some of the papers that were fairly accessible, to help them to prepare for their first visit. “There wasn’t a lot of specific preparation for the Monitors’ visits. I think the purpose of these visits is to give the Monitors a snapshot of what’s going in the lab. Probably not quite warts and all, because you try and make sure that the work that we show them is work where there are results being generated etc. In the lab visits we try to show them what we’ve been up to.”
The PPI activity
For the first visit, Jason arranged a tour of his lab as well as a meeting with his research team. Three Research Network Monitors attended. Each visit now lasts around two hours, and as many of Jason’s research team as possible are involved. Visits take place every three to six months.
Jason feels that face-to-face meetings work well. “I think there’s a virtue in the Research Network Monitors seeing the lab and actually meeting the people. For our Monitors these face-to-face meetings seem to work well.”
Impact
Jason is pleased with how the PPI has gone to date. “I think it has gone very well. We’ve asked, are we on the right track here, or is there anything we should be doing differently? The Research Network Monitors have asked some very insightful questions and made some very insightful comments. They always make comments about things that we may not have thought about. We’ve also built links with the Research Network and with the Alzheimer’s Society research team. I recently showed the Research Network Monitors the grant we were about to submit to the Alzheimer’s Society and their comments were really helpful. They were very supportive and constructive - it was good to think that we were on basically the right track.”
“There’s no question that having access to people who are really committed to assessing your research is quite unusual. It’s very easy to find any number of helpful colleagues who will read applications, but it’s really difficult to get a completely fresh lay perspective.”
“I feel that I’m much more engaged with the Alzheimer’s Society conference – I will be presenting some of our work there. The reason that is possible is because of this two way process. I’ve also encouraged my PhD students and post-docs to do much more PPI. The way we are thinking about that now is largely because of our contact with patients and carers.”
Follow-up
Jason plans to continue with PPI throughout his project and beyond. “We’ll have scheduled meetings, we’ll show them plans and grant applications so that they can give us tips and advice. If it all goes to plan and we manage to get a new grant then they will be involved in that.”
