In this NIA blog, authors Lis Nielsen, Division Director, DBSR, and Elena Fazio, Health Scientist Administrator, DBSR, identify research gaps around dementia care and discuss what NIA is doing to address them.
“Following the 2017 National Research Summit on Care, Services, and Supports for Persons With Dementia and their Caregivers, NIA partnered with the Agency for Healthcare Research and Quality (AHRQ) and the National Academies of Sciences, Engineering, and Medicine (NASEM) to assess the evidence for care interventions for persons living with Alzheimer’s disease and related dementias. This project of identifying and evaluating evidence for care interventions is now complete, and NIA and other stakeholders have valuable information to guide the next steps.
The AHRQ review, Care Interventions for People Living With Dementia and Their Caregivers, and the accompanying NASEM consensus study report, Meeting the Challenge of Caring for Persons Living With Dementia and Their Care Partners and Caregivers, found opportunities to improve and strengthen the dementia care research base. For example, AHRQ review authors noted that dementia care research, in general, has been slow to incorporate key elements of rigorous intervention design. The NASEM authors recommended that future research in the field use strong, pragmatic, and informative methodologies; prioritize inclusivity; and include assessments of real-world effectiveness.
What is NIA doing to address the research gaps?
Many of the research gaps identified in the AHRQ and NASEM reports have been on our radar for some time and are consistent with other feedback and models we have used to inform our research priorities (for example, NACA review of BSR, NIH Stage Model). In 2019, NIA funded multiple research infrastructure projects aimed at improving the rigor of behavioral intervention development for dementia care and caregiver research, including the Roybal Centers for Translational Research on Dementia Care Provider Support and the NIA Imbedded Pragmatic AD/ADRD Clinical Trials (IMPACT) Collaboratory. These projects were designed to catalyze widespread, system-level changes and establish a research pipeline to strengthen care and caregiving intervention research, which is critical to address the research gaps and opportunities raised in both reports.
Although there is a need for high-quality care today, it takes time to build a sufficient evidence base from rigorous and reproducible research to inform improved care models. We look forward to learning from these projects and to expanding our support to further address the relevant research issues raised in the AHRQ and NASEM reports.”
Read the the full Inside NIA blog post, “NIA support for dementia care research: Taking stock of the evidence.”