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NIA support for dementia care research: Taking stock of the evidence

Lis Nielsen
Division Director,
Division of Behavioral and Social Research (DBSR)
Elena Fazio
Elena FAZIO,
Director, Office of AD-ADRD Strategic Coordination OASC,
Division of Behavioral and Social Research (DBSR)

The authors would like to thank their colleague and co-author Chandra Keller for her valuable contributions to this post.

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.

But wait, there’s more!

And speaking of expanding our support, we are pleased to announce that NIA has published two new funding announcements that build on earlier opportunities to directly address the needs identified in the report topics. They will promote research to address the care needs and promote the health, function, and well-being of persons living with Alzheimer’s and related dementias and their caregivers, with an emphasis on improved rigor and real-world applicability across broad and diverse populations.

  • Dementia Care and Caregiver Support Intervention Research (R01 Clinical Trial Required)
    • Supports various stages of intervention development research and aims to lay the groundwork for real-world implementation of dementia care and caregiving interventions.
    • Applications to PAR-21-307 are due Oct. 7. Contact Lisa Onken with questions.
  • Pragmatic Trials for Dementia Care and Caregiver Support (R61/R33 Clinical Trial Required)
    • Seeks phased award applications for dementia care pragmatic trials in multiple settings. The R61 phase will support Stage I or Stage III pilot research to test the feasibility of interventions that, if successful, can transition to the R33 phase for a Stage IV pragmatic trial (see the NIH Stage Model for more details on the six scientific stages of behavioral intervention development.)
    • PAR-21-308 applications are due Oct. 7. Contact Partha Bhattacharyya with questions.

NIA is eager to continue our momentum in rigorous behavioral intervention development research for dementia care and caregiver support. Whether you are new to developing these interventions or experienced in this area, these opportunities are for you!

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