Study Highlights Underreporting of Dementia Among Older Americans
A recent study from Yale University suggests that many older Americans either lack awareness or do not self-report a dementia diagnosis. According to the study, 67 percent of older participants underreported having dementia, far higher than the underreporting rates for other conditions like hypertension (23 percent), arthritis (17 percent), diabetes (39 percent), and depression (46 percent).
Xi Chen, the study’s lead author and an associate professor of health policy and economics at Yale University, noted the stigma associated with dementia diagnoses. Some patients may deny or hide their condition due to this stigma. The study, published on August 26, in JAMA Network Open, pointed out that dementia often goes unreported because it’s not always discussed clearly with patients by clinicians. They may record a suspected diagnosis without thoroughly communicating it to the patient and their family.
Dementia affects over one in ten older Americans and their families. Researchers warn that lack of awareness or disclosure of dementia can disrupt care planning, threaten patient safety, and hinder effective disease management, reducing the benefits of early diagnosis.
“A diagnosis does its work when it’s clearly communicated and followed by real support,” said Yuting Qian, a postdoctoral associate at Yale University involved in the study.
Insights from the Study
While the study couldn’t entirely separate patient unawareness from nondisclosure, it identified systemic factors influencing underreporting. Chen highlighted that patients enrolled in Medicare Advantage, those consulting dementia specialists, and those diagnosed in outpatient settings were less likely to underreport. This points to issues in disclosure practices rather than patient preferences.
Underreporting was most common in the early stages of dementia diagnosis when clinicians may hesitate to confirm it. Socially vulnerable individuals were more likely to underreport. These include those living alone, with lower education, dual Medicare-Medicaid eligibility, and African American older adults, highlighting communication and support gaps.
Dementia underreporting greatly exceeded that of other stigmatized conditions like depression. Patients who underreported their dementia diagnosis were less likely to consult doctors for health issues or receive flu vaccines. Contrary to assumptions, underreporting does not appear memory-related. Patients were still reporting conditions like arthritis, hypertension, and diabetes at higher rates. The issue seems to stem from patients not being clearly informed or finding it difficult to accept or share the diagnosis.
“The most striking finding is not that underreporting exists, but the magnitude of it,” remarked Dr. Ambar Kulshreshtha from Emory University, who was not part of the research.
High underreporting levels, particularly in a time of increased dementia awareness and emerging therapies, signal a need for better communication of diagnoses alongside detection improvements.
Consequences of Underreporting
One major concern with dementia underreporting is that clinicians might miss timely intervention opportunities. Early diagnosis stages allow individuals to manage finances, safety, driving, legal affairs, and treatment choices, which are crucial for implementing new disease-modifying therapies.
Dementia underreporting impacts health outcomes and care quality. According to Kulshreshtha, unawareness or non-acknowledgment of dementia may lead to ineffective management of other chronic conditions, raising preventable complications, emergency visits, and hospitalizations.
Recommendations for Improvement
Chen emphasizes the need for clinicians to have time, training, and reimbursement to deliver dementia diagnoses clearly and compassionately. They should regularly revisit the diagnosis, as one conversation is rarely enough. Outreach should focus on vulnerable patients like those living alone with limited resources.
Stigma reduction requires societal effort. Chen advocates for open discussions to make diagnosis acceptance and available support easier.
Reference: Chen, Xi et al. (2026) Dementia Diagnosis Underreporting and Care Engagement and Planning Among Older Adults. JAMA Network Open.