Dementia Diagnosis Underreporting Among Older Americans

Many older Americans may have a dementia diagnosis without being aware or may not disclose having it. A study from Yale University highlights this issue. Researchers discovered that 67 percent of older Americans in the study did not report a dementia diagnosis. This rate was more than twice that of other conditions in the same group. For instance, 23 percent did not report having hypertension, 17 percent did not report arthritis, 39 percent did not report diabetes, and 46 percent did not report depression. Xi Chen, the study’s lead author and a Yale University associate professor, discussed these statistics with Newsweek. The study appeared in JAMA Network Open on August 26.

Xi Chen noted that dementia remains highly stigmatized. Some patients deny or hide their diagnosis. Often, clinicians document a suspected diagnosis without a clear conversation with patients or their families. Dementia affects over one in ten older Americans and their families. Unawareness or non-disclosure of a diagnosis can disrupt care planning, compromise patient safety, and limit disease management. This lack of engagement poses a barrier to early detection benefits. Yuting Qian, a postdoctoral associate at Yale involved in the study, emphasized that a diagnosis is effective when clearly communicated and supported.

Study Findings

Chen acknowledged that their data cannot entirely separate patient unawareness from nondisclosure. Several findings suggest a significant role for the health system. Patients enrolled in Medicare Advantage or those who saw a dementia specialist in an outpatient setting were less likely to underreport. These factors relate to disclosure practices, not patient choices. Underreporting was most common in the early diagnosis phase when clinicians may hesitate to confirm it. People most likely to underreport were socially vulnerable, living alone, had lower education levels, were eligible for dual Medicare-Medicaid, and were African American older adults. These gaps reflect communication and support issues, not deliberate concealment.

Stigma, however, still contributes. Chen noted that underreporting for dementia far exceeds that of other stigmatized conditions like depression. Patients who underreported their diagnosis were less likely to visit a doctor or get a flu vaccine. It doesn’t seem to be a memory issue. Qian pointed out that those living with dementia reported other conditions such as arthritis, high blood pressure, and diabetes at higher rates. If recall were the problem, the reporting gap would be similar across conditions, but it is not.

Chen summarized that many patients were never clearly informed, never fully understood, or found the diagnosis difficult to accept or share. Dr. Ambar Kulshreshtha from Emory University, not involved in the study, found these findings not entirely surprising but highlighted the extent of underreporting as striking. In an era of increasing awareness about dementia risks and emerging therapies, the levels of underreporting are concerning. Improving detection alone isn’t enough; ensuring patient comprehension is crucial.

Consequences of Underreporting

The main concern with dementia underreporting is that clinicians might miss the opportunity to act on the diagnosis. The early stage of dementia is when individuals can make decisions regarding finances, safety, driving, legal matters, and treatment preferences. New therapies are most relevant at this stage. Dementia underreporting also impacts health outcomes and care quality. Without awareness of their diagnosis, patients may inadequately manage other chronic conditions, increasing the risk of preventable complications, emergency visits, and hospitalizations.

Recommended Actions

Chen suggested that clinicians need time, training, and reimbursement to disclose a dementia diagnosis clearly and compassionately. Diagnoses should be revisited, as one conversation is often insufficient. Outreach and care should target the most vulnerable, like those living alone with limited resources. Reducing the stigma around dementia is a societal task. Open discussions can make accepting a diagnosis and seeking help easier.

Reference: Chen, Xi et al. (2026) Dementia Diagnosis Underreporting and Care Engagement and Planning Among Older Adults. JAMA Network Open. View Article