New research collaboratory designed to spur innovation and improve dementia care

Sept. 11, 2019
Initiative involves health care systems to test interventions in real-world settings.

To spur innovation to meet the challenges of complex care management for people with Alzheimer’s disease and related dementias (AD/ADRD) and their families, the National Institute on Aging (NIA), part of the National Institutes of Health, has announced funding for a new effort designed to test care interventions in real-world settings.

Brown University, Providence, Rhode Island, will partner with Hebrew Senior Life, a Harvard Medical School Affiliate, Roslindale, Massachusetts, to manage the Imbedded Pragmatic AD/ADRD Clinical Trials (IMPACT) Collaboratory with funding from NIA that is expected to total $53.4 million over five years. IMPACT Collaboratory researchers will team with scientists at other universities with healthcare and long-term care systems to guide research to develop and test novel ways to care for people with AD/ADRD.

Unlike traditional clinical studies, which are conducted in specific groups of people in ideal, tightly controlled conditions and settings, pragmatic trials test interventions in real-life settings, such as hospitals and medical clinics, where people receiving care are more representative of general patient populations. Pragmatic trials use relatively simple study designs without sacrificing scientific rigor.

The IMPACT Collaboratory is modeled on the NIH’s Health Care Systems Research Collaboratory, which involves partnering with healthcare systems to conduct large-scale clinical studies. Like the NIH program, the new collaboratory will promote the development of pragmatic clinical trials conducted in settings such as hospitals, homes, assisted living facilities, adult day centers, and nursing homes, simultaneously training the next generation of pragmatic trialists.

It will also serve as a national resource to support the development of pilot clinical trials to improve care and health outcomes for people with dementia and their caregivers, both in the home and in these other settings. Testing dementia care improvements in these everyday settings should allow broader participation of diverse participants and strengthen the applicability and implementation of research results in real-world settings.

Lack of continuity in dementia care is associated with higher rates of hospitalization, emergency department visits, testing, and healthcare spending, as well as premature institutionalization and burdensome transitions in late-life dementia, studies have shown. Poor-quality care can mean a worse quality of life for people with dementia and their caregivers. Currently, 5.6 million Americans age 65 and older live with Alzheimer’s dementia, most of them cared for at home by family members. Tens of thousands more have Lewy body, frontotemporal, vascular, and other types of dementia.

“There is a need for studies conducted in realistic settings that can provide evidence for system-wide benefits,” said John Haaga, PhD, director of the division of behavioral and social research at NIA. “This award is designed to develop a research infrastructure that encourages pragmatic trials of innovative dementia care, develops best practices for conducting these types of trials, and shares knowledge among researchers and health systems, with the overall goal of improving care for people with dementia and their caregivers.”