A striking 81% of participants with probable dementia were unaware of their diagnosis, with Mexican American participants showing significantly higher rates of unawareness at 85% compared with 68% for non-Hispanic White participants. Access to primary care and caregiver burden were not associated with diagnosis unawareness, suggesting other factors influence this disparity.
"There are three main potential causes of dementia diagnosis unawareness: The physician may not diagnose the patient, they may withhold the diagnosis, or the patient/family may not grasp its significance. In practice, physicians often hesitate to diagnose dementia reportedly due to the lengthy screening process and discomfort associated with delivering a diagnosis seen as offering little benefit for such a stigmatized disease," wrote the authors of the study.
The study was led by Josh Martins-Caulfield, Department of Neurology, University of Michigan Medical School in Ann Arbor. It was published online in Journal of General Internal Medicine.
The cross-sectional design nested within a cohort study prevents establishing causality. The study's execution during the pandemic necessitated a shift from planned in-person interviews to telephone screenings. While the Montreal Cognitive Assessment cut points used for cognitive impairment assessment are widely accepted, they may not be as comprehensive as other diagnostic tools. The reliance on self-reported data introduces potential issues with recall accuracy and diagnosis understanding. The study's focus on a single community of predominantly non-immigrant Mexican Americans may limit broader generalizability of the findings.
The study received funding from National Institutes of Health grants RO1 NS100687 and RO1 AGO69148. Kenneth Langa, MD, PhD, disclosed receiving funding from the National Institutes of Health and Alzheimer's Association, consulting fees from the National Institutes of Health, payment for expert testimony in a legal case related to decisional capacity in dementia, and payment for participation in a Data Safety Monitoring Board at Indiana University. Roshanak Mehdipanah, PhD, reported receiving institutional funding from the Centers for Disease Control and Prevention, CDC Foundation, Community Legal Services, and Quicken Loans Community Fund, along with honoraria from Duly Health and Care and Milbank Quarterly. Additional disclosures are noted in the original article.