PROVIDENCE, R.I. [Brown University] — A National Institute on Aging grant to Brown University will fund research on the impact of health policies and systems on people living with Alzheimer’s disease and related dementias. The grant is expected to total approximately $13 million over five years.
Although the number of people living with Alzheimer’s disease and related dementias is expected to triple by 2050, most health policies are designed and evaluated in terms of impact on “average” patients, without specific consideration of the consequences for high-cost, high-need populations, the researchers said.
“Examining the effects of these policies is crucial to document unintended consequences and inform policies that enhance access to health care, improve quality of care and reduce disparities for people living with dementia,” said Dr. Amal Trivedi, aprofessor of health services, policy and practice and of medicine who will lead the project for Brown University’s School of Public Health.
In addition, he said, while enrollment in privately managed Medicare Advantage health insurance plans has increased significantly, there is still limited evidence about the impact of managed care for people with serious health conditions.
“The main goal of this project is to address urgent policy gaps in knowledge for this uniquely vulnerable population,” said Trivedi who is affiliated with the Department of Health Services, Policy and Practice and the Center for Gerontology and Health Care Research at Brown.
The grant will fund new public health projects focused on people with Alzheimer’s disease and related dementias, including: an examination of the impact of Medicare Advantage contract terminations; an investigation into Medicaid coverage and federal policy changes implemented during the COVID-19 pandemic; and studies that focus on the effects of novel payment changes on patients in hospice and home health, respectively.
The research team includes scholars from six institutions across the country. Kali Thomas, who worked on related research at Brown for 12 years, will co-lead the team with Trivedi.
To ensure a focus on equity, the research will include interviews with stakeholders, including representatives from health care systems and policy organizations, as well as older adults living with dementia and their caregivers, said Thomas, who is now a professor of nursing and public health at Johns Hopkins School of Nursing. The goal is to understand the mechanisms that contribute to care outcomes and ways to intervene.
“The perspective of patients and their families who are directly affected by different health policies is often missing from debates and discussions about those very policies,” Thomas said. “We want to understand their experiences and what matters most to them so that the research we do is based in their realities and leads to actionable, person-centered solutions.”
Trivedi said the grant builds on 15 years of scholarship, based at Brown, to create a robust data infrastructure that integrates information across health insurance payers, care settings, disease stages, and changes in policy and practice. That information has proven integral for producing research that can inform improvements in care for older people and those with Alzheimer’s disease and related dementias.
The researchers will publish studies and continue to share findings via the interactive data platform LTCFocus.org, a resource for other researchers, journalists and policymakers interested in the relationships between state policies, local market forces and the quality of long-term care in America.
Ultimately, the research supported by the National Institute on Aging grant is focused on impact, Trivedi said.
“At the end of these five years, we hope this research has helped policymakers identify unintended consequences of these payment and financing changes and ultimately craft more equitable policies to better support the care and outcomes of people with Alzheimer’s disease and dementia and their caregivers,” he said.
