A team of researchers, led by Amber Barnato, MD, MPH, MS, at Dartmouth’s Geisel School of Medicine, has been awarded a $16.2 million grant from the National Institute on Aging (NIA) to study inequity in health and social care for adults with Alzheimer’s disease and related dementias (ADRD).
The five-year renewal grant—which builds on 20 years of seminal research showing that variation in healthcare service use is a substantial cause and consequence of inefficiency in healthcare—will include major research hubs at the University of Indiana Medical School and Harvard Medical School.
“I’m very excited that Amber and her colleagues have received this renewed funding from the NIA to address inequities in care for people who are affected by this significant public health crisis,” says Duane Compton, PhD, dean of Geisel. “Their innovative research will increase our understanding of the causes underlying unequal burdens of Alzheimer’s and inform efforts to improve care and social support services for the disease.”
An estimated 7.5 million Americans aged 65 or older currently live with Alzheimer’s disease and related dementias, and that number is projected to rise to nearly 13 million by 2050, placing an even greater burden on patients, caregivers, and the healthcare system.
This rising burden falls disproportionately on racialized and marginalized populations who experience a range of disparities. These include differing exposure to the modifiable risk factors of ADRD, delays in diagnosis and referral to specialists, gaps in ongoing treatment and support, and lower quality nursing home and end-of-life care.
“The new grant extends from our prior work that focused separately on persons with ADRD, persons from historically marginalized racial groups, and lower-income and disabled persons as distinct ‘vulnerable’ populations—now, we’ll be exploring how these intersecting identities affect treatment and outcomes,” explains Barnato, the John E. Wennberg Distinguished Professor in Health Policy and Clinical Practice and director of The Dartmouth Institute for Health Policy and Clinical Practice at Geisel, who is serving as PI on the grant.
“Much of our prior research has used Medicare fee-for-service claims data from hospital referral regions across the country,” adds Barnato. “This grant renewal will allow us to broaden our study methods, incorporating approaches such as surveys and qualitative interviews, as we look at different factors that influence disparities in ADRD care—many of which have been understudied.”
“There have been amazing advances in ADRD research, yet there are still gaps in addressing some of the most prevalent and costly problems in ADRD research,” says Nicole Fowler, PhD, MHSA, associate professor of medicine at Indiana University School of Medicine and study team member. “The research proposed by this new collaborative project will create data accessibility and links between complementary and real-world sources that will allow us to look at larger and more diverse populations with ADRD and those who are at risk of developing ADRD.”
Guided by three Cores—providing expertise in administration, research coordination, and planning; data management; and methods—the new grant will be organized around three main aims and several interrelated projects.
One aim of the grant will be to study the biases that people living with ADRD are subject to—particularly those embedded in policies and systems that shape the perceptions and behaviors of those who care for them. This will include exploring state-level policy differences and their influence on access to home and community-based services (HCBS).
As part of this work, the investigators will test whether resident services coordinators in affordable senior housing decrease adverse healthcare service use and increase HCBS use for low-income residents with ADRD. They will also identify state- and federal-level policies that contribute to higher-quality primary care for older adults with ADRD.
Another aim of the grant will be to look at how major shifts in the U.S. healthcare system—towards increased consolidation of providers and alternative payment models that encourage coordinated care and more home-based services—impact ADRD patients. This work will include focusing on the understudied area of Medicaid-financed HCBS for persons living with ADRD; and how changes in primary-care practice and hospital ownership impact care.
“In response to a rising need for long-term services and supports and a push to serve individuals with disabling conditions in their communities, state Medicaid programs have invested heavily in home and community-based services,” says Ellen Meara, PhD, a professor of health economics and policy at the Harvard T.H. Chan School of Public Health and study team member. “However, the evidence on the availability and effectiveness of such services, especially for marginalized populations, is limited. This grant can help to fill that gap.”
A third aim of the grant will be to investigate the bias that people living with ADRD face in clinical decision making at the point of care. The study teams will explore bias in HCBS referral patterns, as well as in provider diagnostic test ordering in the acute-care setting, while also looking at the impact of diagnosis on the functional trajectory of patients with ADRD.
“Patients with ADRD are at high risk of acute illnesses, including heart attacks and pulmonary embolisms, but are less likely to receive diagnostic testing and treatment,” says Leila Agha, PhD, an associate professor of healthcare policy at Harvard Medical School and member of the study team. “At each step of the care pathway, testing and treatment decisions for patients with ADRD are complicated by differences in clinical presentation and uncertainty about potential recovery from high-intensity care. This grant will allow us to develop new evidence that can inform and improve care decisions for patients with ADRD who are at risk for acute illness.”
Founded in 1797, the Geisel School of Medicine at Dartmouth strives to improve the lives of the communities it serves through excellence in learning, discovery, and healing. The Geisel School of Medicine is renowned for its leadership in medical education, healthcare policy and delivery science, biomedical research, global health, and in creating innovations that improve lives worldwide. As one of America’s leading medical schools, Dartmouth’s Geisel School of Medicine is committed to training new generations of diverse leaders who will help solve our most vexing challenges in healthcare.