Dementia Diagnosis Underreporting Among Older Americans: A Yale University Study

Dementia Diagnosis in Older Americans

Many older Americans might be unaware of their dementia diagnosis or not report it accurately. A study conducted by experts at Yale University revealed that a staggering 67 percent of older Americans underreport having a dementia diagnosis. This figure greatly surpasses the rates for other medical conditions such as hypertension (23 percent), arthritis (17 percent), diabetes (39 percent), and depression (46 percent).

Reasons Behind Underreporting

Dementia is one of the most stigmatized diagnoses, leading to denial or concealment. Additionally, the communication regarding a dementia diagnosis is often inadequate. Clinicians might note a suspected or provisional diagnosis without discussing it clearly with patients or their families.

Yuting Qian, a postdoctoral associate at Yale University, emphasized the significance of clear communication followed by genuine support in handling dementia diagnoses.

Study Findings

The research highlighted the challenges in separating patient unawareness from nondisclosure. However, certain factors indicate a substantial role of the health system. Patients were less likely to underreport if they were enrolled in Medicare Advantage, saw a dementia specialist, or were diagnosed in an outpatient setting. These are linked to disclosure practices rather than patient preferences.

Underreporting was prevalent during the initial diagnostic stage when the diagnosis is often tentative. Socially vulnerable groups such as those living alone, individuals with lower education, dual Medicare-Medicaid eligibility, and African American older adults showed higher rates of underreporting.

Impacts of Underreporting

Underreporting can disrupt care planning and endanger patient safety. It limits engagement with disease management, making early detection benefits harder to achieve. Clinicians can miss the critical early stage of dementia, where patients’ decision-making capabilities regarding finances, safety, driving, legal affairs, and treatment preferences are retained.

Dr. Ambar Kulshreshtha noted that lack of acknowledgment or recall of the diagnosis might hinder effective management of other chronic conditions, increasing preventable complications and healthcare visits.

Recommendations

To address underreporting, clinicians need adequate time, training, and reimbursement to disclose dementia diagnoses clearly and compassionately. Revisiting conversations is crucial, especially for vulnerable patients who are socially isolated or resource-limited.

Reducing dementia stigma remains a societal task. Open discussions facilitate acceptance and access to available support.

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