Study on Dementia Diagnosis Underreporting Among Older Americans

Many older Americans may either be unaware of their dementia diagnoses or not report them, according to a study by Yale University experts.

Key Findings

The study revealed that 67% of older Americans underreport dementia diagnoses, which is more than double the rate for other conditions in the same group. Comparatively, 23% underreported hypertension, 17% arthritis, 39% diabetes, and 46% depression.

These findings highlight the stigma associated with dementia and suggest that clinicians may not communicate the diagnosis effectively.

Dementia affects over one in 10 older Americans, impacting their families. Lack of awareness or nondisclosure disrupts care planning, endangers patient safety, and limits disease management, preventing the benefits of early detection.

Study Insights

The study authors suggest that health system factors contribute to the problem, not merely patient preferences. Patients enrolled in Medicare Advantage, those seeing specialists, and those diagnosed in outpatient settings reported their diagnoses more accurately.

Underreporting is highest during the tentative early phase and is common among socially vulnerable groups. These include individuals living alone, those with lower education, dual Medicare-Medicaid eligibility, and African American older adults.

Despite the role of stigma, dementia underreporting exceeds that of other stigmatized conditions like depression. It does not appear to be related to memory since participants reported other conditions more accurately.

Impacts

The concern is that unreported dementia diagnoses mean clinicians might miss early treatment opportunities. Early-stage dementia is when patients can still make important decisions regarding finances, safety, and legal affairs. It is also when new therapies are most effective.

Underreporting can lead to inefficient management of other chronic conditions, increasing risks of complications and healthcare visits.

Recommendations

The findings suggest clinicians need time, training, and proper compensation to discuss dementia diagnoses clearly and compassionately. Revisiting the conversation is crucial, as one discussion is often inadequate.

Care should focus on vulnerable patients, such as those living alone or with fewer resources.

Reducing dementia stigma is a societal challenge. Open dialogue can help individuals accept diagnoses and seek available help.

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

Contact Newsweek editors about this story: Kara Dolman and Emma Lee-Sang.