Many older Americans might have dementia diagnoses without knowing or may choose not to report them. A study by Yale University experts found that 67% of older Americans in the study underreported having a dementia diagnosis. This rate is more than twice that of other conditions in the same group, such as hypertension (23%), arthritis (17%), diabetes (39%), and depression (46%). These findings were conveyed by the study’s lead author, Xi Chen, an associate professor at Yale University.
The study, published on August 26 in JAMA Network Open, highlights the stigma associated with dementia. Chen explained that dementia is one of the most stigmatized diagnoses, leading some patients to deny or conceal it. He added that diagnosis delivery is often poor, with clinicians sometimes documenting a suspected diagnosis without discussing it clearly with the patient and family.
Dementia affects over one in 10 older Americans and their families. Lack of awareness or nondisclosure of a diagnosis can disrupt care planning, threaten patient safety, and limit disease management engagement. This creates a barrier to the benefits of early detection. Yuting Qian, a postdoctoral associate involved in the study, emphasized that proper communication followed by support is essential for a diagnosis to be effective.
What The Study Found
Chen pointed out that while the study’s data couldn’t fully distinguish between patient unawareness and nondisclosure, it indicated the health system’s substantial role. He noted that patients in Medicare Advantage, those seeing a dementia specialist, or those diagnosed in outpatient settings were less likely to underreport. This suggests issues with disclosure practices rather than patient preferences.
Underreporting was highest in the initial phase when diagnoses were tentative. Those most likely to underreport lived alone, had lower education, dual Medicare-Medicaid eligibility, or were African American. This points to communication and support gaps rather than intentional concealment.
Despite this, stigma still impacts dementia underreporting more than other conditions like depression. Patients who underreport their diagnosis are less likely to visit a doctor or get a flu vaccine. Qian highlighted that dementia patients reported other conditions like arthritis and high blood pressure at higher rates, suggesting the issue is not merely about recall.
Chen summarized that many patients were either not clearly informed or did not fully understand their diagnosis. Some struggled to accept or share it. Commenting on the findings, Dr. Ambar Kulshreshtha of Emory University found the magnitude of underreporting striking in an era with growing dementia awareness.
Impacts Of Underreporting
Patient underreporting of dementia poses risks by missing critical action windows. Early dementia stages allow patients to make key decisions about finances, safety, driving, legal matters, and treatment preferences. This stage is also when disease-modifying therapies are most relevant.
Underreporting can lead to major health consequences. When patients are unaware or do not acknowledge their diagnosis, they may mismanage other chronic conditions, raising risks for complications and hospital visits.
Recommendations
Chen suggested that clinicians need time, training, and funds to disclose dementia diagnoses clearly and revisit the conversation, as one discussion is often insufficient. Outreach should focus on vulnerable groups, such as those living alone or with limited resources.
Reducing dementia stigma is a societal responsibility, Chen mentioned. Open dialogue makes it easier for individuals to accept diagnoses and access available help.
Reference: Chen, Xi et al. (2026) Dementia Diagnosis Underreporting and Care Engagement and Planning Among Older Adults. JAMA Network Open.