A new study reveals that over 75% of older adults with dementia may not know they have the disease, with awareness rates even lower among Mexican Americans.
The study, conducted in Nueces County, Texas, highlights that the majority of these adults are not diagnosed due to various factors including physician hesitance and the complexity of patient-doctor relationships.
Awareness and Ethnic Disparities in Dementia Diagnosis
More than 75% of older adults with dementia may not realize they have the condition, according to a study from the University of Michigan.
The unawareness rate is even higher — reaching 85% — among Mexican Americans, the largest group within the U.S. Hispanic and Latino population.
The study, conducted with participants in Nueces County, Texas, found that fewer than 7% of those classified as having probable dementia, based on cognitive assessments, lacked a primary care provider.
The results were published today (January 14) in the Journal of General Internal Medicine.
Public Health Challenge and Missed Opportunities
“Dementia diagnosis unawareness is a public health issue that must be addressed,” said senior author Lewis Morgenstern, M.D., professor of neurology, neurosurgery, and emergency medicine at University of Michigan Medical School and professor of epidemiology at the U-M School of Public Health.
“The diagnosis of dementia provides the opportunity to seek out treatment and home care services to help both patients and caregivers. If the diagnosis is not given, or the understanding of the diagnosis is unclear, it is a missed opportunity.”
Investigators found no link between access to primary care and awareness of dementia diagnosis. In other words, they weren’t in the dark about their diagnosis for lack of communication with their doctor.
In fact, researchers suspect that the nature of patient-physician relationships is a central reason for the awareness gap.
Physician Hesitance and Cultural Competence
“The physician may not be diagnosing the patient or may be withholding the diagnosis of dementia,” said first author Josh Martins-Caulfield, a graduate of the U-M School of Public Health and medical student at the Icahn School of Medicine at Mount Sinai.
“In practice, physicians often hesitate to diagnose dementia, citing reasons such as insufficient time with individual patients to conduct the screening process or not having dementia-specific training. The discomfort of providing the diagnosis may also lead them to wait for patients or family members to raise concerns about memory issues rather than initiating discussions proactively.”
Several studies have found that the majority of older adults in the U.S. with probable dementia go either undiagnosed or are unaware of a diagnosis. One 2018 report revealed that Hispanic and Latino adults were more likely to be undiagnosed.
“Cultural competence is crucial in treating all patients, especially when dealing with a heavily stigmatized disease,” Morgenstern said.
Caregiving Burden Unaffected by Awareness
Despite the lack of dementia awareness found in the study, having a formal diagnosis did not reduce a caregiver’s perceived burden.
This could be, researchers suggest, because the diagnosis forces caregivers to quickly confront the increased responsibilities that come with the diagnosis of dementia in a loved one, including decision-making and managing daily care.
“Caregiving can be immensely taxing, particularly when balancing one’s own family responsibilities and personal life,” said Darin B. Zahuranec, M.D., M.S., co-author and a professor of neurology at U-M Medical School.
“Effective care necessitates accurate diagnosis combined with comprehensive emotional support and guidance for caregivers to access essential resources.”
Reference: “Dementia Diagnosis Unawareness and Caregiver Burden in a Multi-ethnic Cohort” by Josh Martins-Caulfield BS, Roshanak Mehdipanah PhD, Emily M. Briceño PhD, Wen Chang MS, Steven G. Heeringa PhD, Xavier F. Gonzales PhD, Deborah A. Levine MD, MPH, Kenneth M. Langa MD, PhD, Darin B. Zahuranec MD, Nelda Garcia BS and Lewis B. Morgenstern MD, 14 January 2025, Journal of General Internal Medicine.
DOI: 10.1007/s11606-024-09333-1
Additional authors: Roshanak Mehdipanah, Ph.D., Emily M. Briceño, Ph.D., Wen Chang, M.S., Steven G. Heeringa, Ph.D., Kenneth M. Langa, M.D., Ph.D., Darin B. Zahuranec, M.D. and Nelda Garcia, all of University of Michigan, and Xavier F. Gonzales, Ph.D., of Texas A&M University, Corpus Christi.
Funding/disclosures: This study was funded by the National Institute of Neurological Disorders and Stroke (R01NS100687) and National Institute on Aging (R01AG069148), both of the National Institutes of Health.
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