A unique aspect of Alzheimer’s Society grants is that each funded study is matched with three members of the Research Network. Volunteers choose the projects they would like to monitor, once funding has begun.
Research Network monitors are not expected to participate in the research itself but to monitor the progress of the research and provide ongoing advice to the researcher.
Discussing their research with Research Network volunteers gives the research team the opportunity to seek the views of people affected by dementia, and hear about their personal experiences.
Many researchers tell us that they find the process extremely rewarding.
'The monitors on our project were able to give us a unique insight into the sort of difficulties people with dementia experience and provide constructive feedback to our research plans, enabling us to tailor our research appropriately.'
Sergio Della Sala, Professor of Human Cognitive Neuropsychology, Edinburgh University
Monitors meet funded researchers at least annually, although some researchers benefit from meeting their monitors every 6 months. During these meetings monitors receive updates on the project and give feedback based on their personal experience of dementia. Input from the monitors can be requested throughout the research project (as appropriate) on:
- Project plans
- Participant recruitment
- Data analysis
- Dissemination plans
- Communication to a lay audience
- Patient literature in advance of ethics submission
After each monitoring visit, the monitor team provides a brief report for Alzheimer’s Society on the monitoring meeting, the progress of the project and their impressions of the research.