Many older Americans may either have dementia diagnoses without knowing or may not self-report having a diagnosis, according to a new study by experts at Yale University. The researchers found that 67 percent of older Americans in the study underreport having a dementia diagnosis, which was more than double the rate for other conditions within the same sample group. For example, 23 percent underreported having hypertension, 17 percent underreported having arthritis, 39 percent underreported having diabetes and 46 percent underreported having depression, the study's lead author Xi Chen, who is also an associate professor of health policy and economics at Yale University, told Newsweek.
The study was published on August 26, in JAMA Network Open. Chen said dementia is among "the most stigmatized diagnoses a person can receive, so some patients may deny or conceal it," and added the condition is also "often not delivered well," explaining that clinicians "may document a suspected or provisional diagnosis in the chart without ever having a clear conversation with the patient and family." Dementia affects more than one in 10 older Americans and their families, and the researchers warned that patient unawareness or nondisclosure of a diagnosis can lead to a disruption in "care planning, endanger patient safety and limit engagement with disease management, posing a key barrier to realizing the benefits of early detection." "A diagnosis does its work when it's clearly communicated and followed by real support," Yuting Qian, a postdoctoral associate at Yale University working on the study, told Newsweek. Chen said while their data "cannot fully separate" patient unawareness and nondisclosure, several findings did "point toward a substantial role for the health system, not just the patient." He said that "patients enrolled in Medicare Advantage, those who saw a dementia specialist, and those diagnosed in an outpatient setting were all considerably less likely to underreport, and those factors are about disclosure practices, not patient preferences." He added that underreporting was "highest in the earliest phase, when a diagnosis is often tentative and clinicians may hesitate to name it," and that people "most likely to underreport were socially vulnerable: living alone, lower education, dual Medicare-Medicaid eligibility, and African American older adults, which points to gaps in communication and support rather than deliberate concealment." That's not say stigma doesn't still play a role, Chen continued, as he said dementia underreporting "far exceeded that of other stigmatized conditions like depression." He said they also found that patients who underreported their diagnosis were significantly less likely to see a doctor for a health problem or get a flu vaccine.
One thing that does seem clearer though is it does not appear to be a matter of memory. "These are people living with dementia reporting their arthritis, high blood pressure, and diabetes at much higher rates," Qian said. "If it were simply a matter of recall, the gap would look similar across conditions, but it doesn't." "The most accurate summary is that many patients were never clearly told or never truly understood, and some who were told found the diagnosis too difficult to accept or share," Chen said.
Ambar Kulshreshtha, a physician-epidemiologist at Emory University who was not involved in the study, told Newsweek that these findings are "not entirely surprising," but that the "most striking finding is not that underreporting exists, but the magnitude." "In an era of growing dementia awareness about risk factors and emerging therapies, such high levels of underreporting are concerning," he said. "Overall, this means improving dementia detection alone is insufficient; ensuring patients understand the diagnosis is equally important." The main concern about patient underreporting when it comes to dementia is that it can mean clinicians "miss the window in which they can still act on the diagnosis," Chen said. "The early stage of dementia is precisely when people retain the capacity to make decisions about their finances, safety, driving, legal affairs, and treatment preferences, and when newer disease-modifying therapies are most relevant," he said.
Dementia underreporting can also have "significant consequences for health outcomes and care quality," Kulshreshtha said. "When patients are unaware of, do not recall, or do not acknowledge their diagnosis, they may be less likely to effectively manage their other chronic conditions, increasing the risk of preventable complications, [emergency department] visits, and hospitalizations." Chen said he believed the findings suggested clinicians need the "time, training, and reimbursement to disclose a dementia diagnosis clearly and compassionately, and to revisit it, since one conversation is often not enough," and that outreach and care navigation should be targeted to the most vulnerable patients, for example, those living alone and with fewer resources. Reducing the stigma around dementia though, Chen said "is a societal task." "The more openly we talk about it, the easier it becomes for people to accept a diagnosis and get the help that is available," he said.
Chen, Xi et al. (2026) Dementia Diagnosis Underreporting and Care Engagement and Planning Among Older Adults. JAMA Network Open. https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2853294#251198898 Update 9/3/26, 11:22 a.m. ET: This article was updated with additional information.
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