The Patient-Centered Outcomes Research Institute (PCORI) Methodology Committee convened a Dementia Research Methods Pre-Summit, chaired by PCORI Methodology Committee members David Meltzer and Brian Mittman. In planning for the October 2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers, the following research methods questions emerged as important areas for attention, as a means of ensuring Summit recommendations address the most pressing methods issues in dementia care and services research.

• How can people with dementia and their caregivers engage in research priority setting and in research studies?
• What information do care and services decision makers need and how can these stakeholders be more engaged in research to deliver that information?
• What are current challenges in collection and use of self-report from people with dementia in the research context?
• What study designs are most promising for future research on dementia care and services research?

The goal of the Pre-Summit was to efficiently drive the field toward a methods research agenda, by focusing stakeholder attention on strengths and limitations of methods currently used in dementia intervention research, and to provide recommendations to be addressed at the October 2017 Summit.

We gratefully acknowledge the support of conference activities provided by the LEAD Coalition.

Meeting Materials

• Meeting Agenda
• Chair and Discussant Biosketches
• Relevant Definitions
• Bibliography
• List of Attendees
• Pre-read for Session 1: Engaging People with Dementia and their Caregivers in Research
• Pre-read for Session 2: Engaging Decision Makers in Dementia Care and Services Research
• Pre-read for Session 3: Measuring Disease Impact: Collecting Information from People with Dementia and their Caregivers
• Pre-read 1 for Session 4: Study Design and Implementation: Testing Interventions for People with Dementia and their Families
• Pre-read 2 for Session 4: Study Design and Implementation: Testing Interventions for People with Dementia and their Families
• Summit Report on Challenges in Involving People with Dementia as Study Participants in Research on Care and Services
• Summary and Recommendations

Attendance at this meeting was by invitation only. For more information, please contact Mary Kay Margolis at [email protected].