A recent study conducted by Yale University experts reveals that many older Americans may have dementia diagnoses without being aware or may not report having such a diagnosis. The research, published on August 26 in JAMA Network Open, indicates that 67% of older Americans in the study underreport having a dementia diagnosis. This rate is significantly higher than underreporting for other conditions: 23% for hypertension, 17% for arthritis, 39% for diabetes, and 46% for depression, according to Xi Chen, the study’s lead author and associate professor at Yale University.

This study underscores the issue of dementia being among the most stigmatized diagnoses, with patients possibly denying or concealing it, Chen explains.

Dementia affects over 10% of older Americans and their families, and unawareness or nondisclosure can disrupt care planning, endanger patient safety, and limit engagement with disease management.

Study Findings

Although the study cannot definitively determine the difference between unawareness and nondisclosure, certain factors suggest a significant role for the health system. Older Americans enrolled in Medicare Advantage, those who saw dementia specialists, and those diagnosed in outpatient settings were less likely to underreport. Factors influencing underreporting include social vulnerabilities such as living alone, lower education levels, dual Medicare-Medicaid eligibility, and African American race.

The stigma associated with dementia appears to play a notable role, as underreporting here exceeds that for other stigmatized conditions like depression. Patients underreporting dementia were less likely to visit healthcare providers or receive vaccinations despite managing other health issues like arthritis, high blood pressure, and diabetes.

Impacts of Underreporting

Underreporting dementia diagnoses poses a concern for timely action, especially during dementia’s early stages when decision-making capacities remain intact. Dr. Ambar Kulshreshtha warns that unacknowledged diagnoses can adversely affect health outcomes and care quality, increasing rates of preventable complications, emergency department visits, and hospitalizations.

Recommendations

The study suggests that healthcare professionals require adequate time, training, and reimbursement to clearly and compassionately disclose dementia diagnoses. Outreach and care navigation should focus on vulnerable patients with limited resources. Addressing dementia stigma is a societal challenge, and open discussions can ease acceptance and facilitate access to available support.