Evidence review on dementia care and caregiving intervention now available for public comment
UPDATE: Thank you to those who provided comments on the draft report. The final report on the systematic review, titled “Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward,” is now available.
Note: This post was edited to remove broken links to the public comment form when it expired in April 2020.
A few years ago, NIA collaborated with the Agency for Healthcare Research and Quality (AHRQ) and the National Academies of Sciences, Engineering, and Medicine (NASEM) to assess the evidence for interventions to prevent cognitive decline and dementia. In 2018, in response to the emerging science presented at the 2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers, NIA embarked on a similar collaboration with AHRQ and NASEM — this time to assess care and caregiving interventions for people with dementia (PWD) and their caregivers. I wanted to take this opportunity to share an update about this project with you, as well as an important new opportunity for public input.
Reviewing the Literature
As we did for the previous review, NIA asked AHRQ to conduct — through its Evidence-based Practice Centers (EPC) program — a rigorous systematic review to understand the evidence base for effective care and caregiving interventions. For this study, we asked AHRQ to consider the complexities and multifaceted nature of dementia care and caregiving, including the diversity across populations of PWD and their caregivers, settings and intervention design and outcomes. A final review protocol, developed by the Minnesota EPC, describes the full scope of this review and the criteria for studies to be included.
From now through 04/21/2020, the draft review is posted online and is available for public comment. We invite all individuals with an interest in this topic to provide input directly to AHRQ via its evidence review page.
Generating a Comprehensive Report & Identifying Gaps
A second phase of this project will involve an assessment of the AHRQ-EPC evidence findings by an expert committee, established by NASEM on this topic, at the request of NIA. This committee is charged with assessing the quality of the existing evidence, based predominantly on the evidence presented by the AHRQ and the EPC in this newly released systematic review. They will also develop a detailed report to convey the current state of knowledge, identify which, if any, interventions might be ready for dissemination and implementation on a broad scale, and describe any relevant research gaps in the field.
On April 15, 2020, this NASEM committee will convene, along with other stakeholders and experts, a public workshop — to be held via videocast — to discuss the data contained in the draft AHRQ systematic review and to consider input from a range of stakeholders. We are excited to welcome the broader public, including “Inside NIA” blog readers, to join this virtual event. Following the workshop, the committee will draft a full report, expected to be released in early 2021.
Your Input Needed
We encourage you to take part in this important project by sharing your comments on the AHRQ evidence review and/or participating in the NASEM workshop. Your input is an invaluable contribution toward developing a comprehensive understanding of the best ways to help provide essential care and services for the millions of people living with dementia and their caregivers.