Resources, methods, and data infrastructure to promote research in dementia care, caregiving, and services

BACKGROUND: The National Institute on Aging (NIA), in conjunction with the Department of Health and Human Services as part of the National Alzheimer’s Project Act (NAPA), hosted a 2020 Dementia Care, Caregiving, and Services Research Summit Virtual Meeting Series on August 13, 2020. This paper reflects three presentations related to Theme 6: Research Resources, Methods, and Data Infrastructure. Dr. Bynum discussed the challenges of identifying people for population- and health care-based research, including how definitions of dementia have changed over time, the opportunities and challenges inherent in the use of electronic data sources, and the need to fit data collection strategies to research goals and questions. Dr. Travison provided an overview on the growing use of embedded pragmatic clinical trials (ePCTs) and how to enhance their impact in dementia research. Dr. Wendler presented on the ethical considerations relevant to consent for dementia research, including assessment of decisional capacity and the role of decisional surrogates. CONCLUSIONS: The availability of claims data, electronic health records, and other sources of “existing” data have made the use and development of embedded pragmatic clinical trials both easier and more appealing. Among other things, they offer advantages in terms of lower cost and generalizability to real world settings. This is turn has necessitated the use of informatic and analytic approaches to account for some of the limitations and complexities of such data, including multilevel clustering and the need to link and jointly analyze data from the person with dementia and those of their care partner. As part of this process, it will be important to broaden the scope of who is assessed for decisional capacity, make those assessments more study specific, and assist surrogates in making decisions based on what the individual would have chosen for themselves if capacitated (i.e. substituted judgement).