Alzheimer’s Society has pioneered the active involvement of people affected by dementia in research since establishing the Research Network in 1999. ‘People affected by dementia’ includes people who have dementia as well as those who care for someone with dementia, in a non-professional capacity. We have always been aware of the influence that these dedicated volunteers have. This project aimed to collect their stories to understand and demonstrate the real impact that the Research Network has, in its broadest sense. To collect this evidence, in January 2017 we conducted an online survey of the expert advisors who make up the Alzheimer’s Society Research Strategy Council (RSC) and Grant Advisory Boards (GABs).
In spring 2017 we went on to conduct semi-structured interviews with a number of Research Network volunteers and the researchers they have collaborated with. The output of these interviews was a series of detailed case studies. These demonstrate the range of mechanisms through which impact is achieved.