Unseen dementia: Study finds high rates of undiagnosed cognitive decline in vulnerable communities

Delayed dementia diagnosis carries serious consequences. Without timely intervention, undiagnosed cognitive impairment can lead to medication errors, falls, and increased caregiver stress. It also limits patients’ access to resources and care services that could improve their quality of life.

A new study led by researchers at Emory University School of Medicine and Indiana University reveals that many older adults receiving primary care at federally qualified health centers (FQHCs) live with undiagnosed cognitive impairments, including mild cognitive impairment (MCI) and dementia. In addition, African American patients were more than twice as likely as white patients to have undiagnosed cognitive issues. These findings highlight a critical gap in early detection within marginalized and underserved communities.

“Unrecognized cognitive impairment and dementia present a serious challenge in the U.S. and worldwide, affecting patients, families, and the health care system,” said Ambar Kulshreshtha, MD, associate professor of family and preventive medicine at Emory University School of Medicine and lead author of the study. “Delayed diagnosis often means patients are identified at later stages, when symptoms are more severe, and care is more complex. It also leads to missed opportunities for early treatment that could slow disease progression.”

Impact on underserved communities

FQHCs are nonprofit health centers primarily serving low-income, medically underserved communities, reaching about 30 million patients in the U.S. Most patients have family incomes below 200% of the federal poverty level, making it difficult to afford specialized medical services that require private insurance or out-of-pocket payments.

Published in JAMA Open Network, the study examined 204 adults aged 65 and older with no prior diagnosis of memory impairment at five FQHCs in Indianapolis from 2021 to 2023. Participants underwent comprehensive assessments, including interviews, medical record reviews, neurological exams, and neuropsychological tests. An interdisciplinary team consisting of a neurologist, geriatrician, and neuropsychologist reviewed the data to diagnose normal cognition, MCI, or dementia.

Researchers found that 75% of participants had undiagnosed cognitive issues: 62% had MCI, and 12.3% had dementia. Only 25% had no evidence of cognitive decline.

The study also revealed significant racial disparities, finding that African American patients were more than twice as likely as white patients to have undiagnosed MCI or dementia. These disparities remained even after adjusting for age, gender, and education, emphasizing the need for improved care pathways for early detection in vulnerable populations. Researchers caution against attributing higher rates among African Americans to biological differences; instead, factors like residential segregation, air pollution, discrimination, and educational quality likely play significant roles in these disparities.

Access barriers and systemic problems—such as limited time, training, and resources for cognitive screening in primary care—further compound the higher rates of undetected MCI and dementia among African Americans.

Removing barriers to dementia screening

“Our findings underscore the need for timely screening among older adults, especially high-risk groups like African Americans,” said Kulshreshtha. “Other minority groups, like non-English speaking individuals and those in rural areas, may face even greater challenges in accessing cognitive screenings. There’s still stigma and misconceptions about dementia, and we need to do more to educate our communities. With new treatment options and lifestyle changes that can help, health care systems must evolve to provide timely, equitable approaches for early detection and intervention.”

For patients without access to a specialist, experts recommend incorporating brief cognitive tests during routine visits as a practical solution for early detection. In Atlanta, where Kulshreshtha practices,  he works to help solve this problem as an advisory board member for Georgia Memory Net, a state-funded program led by Emory to promote early and accurate Alzheimer’s diagnosis through primary care.

New model for dementia care

Recent advancements in dementia treatment include the Centers for Medicare & Medicaid Services’ (CMS) Guiding an Improved Dementia Experience (GUIDE) model, a new payment approach designed for patients on regular (fee-for-service) Medicare to enhance their care and alleviate the burden on unpaid caregivers. Emory Integrated Memory Care in Atlanta—one of the nation's most recognized, nurse-practitioner led primary care practices specifically designed for dementia patients and their caregivers—is the only established GUIDE clinic practice in Georgia already operating this model since July 2024.

“Dr. Kulshreshtha is deeply committed to understanding and addressing the challenges of dementia care – he not only studies the issues, but actively partners to develop solutions,” said Ted Johnson, MD, chair of the department of family and preventive medicine and a supporting physician at Emory Integrated Memory Care. “At the Emory Integrated Memory Care clinic, he is a fully partnered, sponsoring physician for the nurse practitioner-led team. His work in this research study is a prime example of his work alongside other national experts to improve patient outcomes.”

CITATION: Kulshreshtha A, Parker ES, Fowler NR, Summanwar D, Miled ZB, Owora AH, Galvin JE, Boustani MA. Prevalence of Unrecognized Cognitive Impairment in Federally Qualified Health Centers. JAMA Netw Open. 2024;7(10):e2440411. doi:10.1001/jamanetworkopen.2024.40411

FUNDING: This study was funded by the National Institutes of Health, National Institute on Aging (grant R01AG06976).