INDIANAPOLIS — A new study conducted by Indiana University School of Medicine researchers has found that primary care screenings for Alzheimer’s disease and related dementias (ADRD) in older adults did not cause psychological distress for the patient’s family members, nor did it better prepare those loved ones for caregiving.
The randomized clinical trial, published in JAMA Internal Medicine, is the first study to examine the longer-term benefits, risks and harms of ADRD screening in primary care for family members most likely to assume caregiving responsibilities. It examined 1,808 patient-family member pairs across 29 Indiana clinics. Each patient was at least 65 years old.
The study was led by Nicole R. Fowler, PhD, MHSA, an associate professor of medicine at the IU School of Medicine and vice chair for research in the Department of Medicine. She is also a scientist at the IU Center for Aging Research at the Regenstrief Institute and in the Center for Health Innovation and Implementation Science at IU.
"These findings are significant because they specifically address a major evidence gap identified by the United States Preventive Services Task Force and others: whether dementia screening helps or harms caregivers and families," Fowler said. "The study provides reassuring evidence that screening did not worsen family members’ quality of life, depression or anxiety over two years."
Primary care screenings have become more prevalent in recent years as physicians hope to identify cognitive impairment caused by Alzheimer’s disease and related dementias as early as possible.
"Delayed diagnosis is associated with greater caregiver stress, burden and isolation, and early detection may help families through education, earlier intervention and support," Fowler said. "We also know that collaborative dementia care programs that work alongside primary care can improve patient and caregiver outcomes, and that newer disease-modifying therapies are only approved for earlier-stage Alzheimer's disease. But this study makes an important distinction: screening alone is not the same as early diagnosis and getting people and their families linked to care."
Fowler added that what happens after screening — diagnosis, treatment, care management, family support — is what likely affects caregivers.
"The message from this work is that early diagnosis may help caregivers when it actually leads to diagnostic assessment, treatment and ongoing support, not simply when a screening test is offered," Fowler said.
To obtain these results, family members were measured across two years by the SF-36, a quality-of-life measure that includes both physical and mental health scores. They were also assessed for anxiety and depressive symptoms. Finally, they were tested using the Preparedness for Caregiving Scale and the Revised Scale for Caregiving Self-Efficacy.
For Fowler, the study's results show a need to build better systems around the screening process to ensure more patients follow up for proper diagnosis and care. She noted that blood tests for Alzheimer’s biomarkers and new monoclonal antibody treatments for Alzheimer’s disease, some of which have been pioneered at IU, have been approved for use since her study began and can further aid the patient population.
This research was funded by the National Institute on Aging and National Institutes of Health.
IU School of Medicine co-authors on the study were: Malaz A. Boustani, MD, MPH; Anthony J. Perkins, MS; Sujuan Gao, PhD; Monica M. Williams-Farrelly, PhD; and Christopher M. Callahan, MD. IU Center for Aging and Regenstrief Institute co-authors were Christina Baucco and Anna Higbie. Katherine J. Head, PhD, of the IU Department of Communication Studies, and Tamilyn Bakas, PhD, RN, of the College of Nursing at the University of Cincinnati rounded out the co-author list.
About the Indiana University School of Medicine
The IU School of Medicine is the largest medical school in the U.S. and is annually ranked among the top medical schools in the nation by U.S. News & World Report. The school offers high-quality medical education, access to leading medical research and rich campus life in nine Indiana cities, including rural and urban locations consistently recognized for livability. According to the Blue Ridge Institute for Medical Research, the IU School of Medicine ranks No. 15 in 2025 National Institutes of Health funding among all public medical schools in the country.
Writer: Rory Appleton, rapplet@iu.edu
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About Regenstrief Institute
Founded in 1969 in Indianapolis, the Regenstrief Institute is a local, national and global leader dedicated to building tools and infrastructure, creating care models and enabling research to improve patients' lives. A key research partner to Indiana University, Regenstrief and its research scientists are responsible for a growing number of major healthcare innovations and studies. Examples range from the development of global health information technology standards that enable the use and interoperability of electronic health records to improving patient-physician communications, to creating models of care that inform clinical practice and improve the lives of patients around the globe.
Sam Regenstrief, a nationally successful entrepreneur from Connersville, Indiana, founded the institute with the goal of making healthcare more efficient and accessible for everyone. His vision continues to guide the institute’s research mission.