Dementia research – what do different public groups want? A survey by the Scottish Dementia Clinical Research Network

Abstract

Scotland's National Dementia Strategy calls for people with dementia and their carers to give voice to what they see as the priorities for dementia research. We sent questionnaires on dementia research priorities, locus and type of research, desired outcome measures and willingness to volunteer, to two groups of dementia research stakeholders: (1) people with dementia and their carers who may or may not be participating in research and (2) those who are directly participating in research. We also made the questionnaire available on a national dementia research website. Five hundred and fourteen responses were received. The top four topics rated by importance were identical across all three groups of respondents: early detection (38.1%), drug trials (14.2%), studies on people living at home (9.7%) and study of carers (6.0%). The data can help shape the dementia research agenda, but more information needs to be made available to the public about other potential research areas.