Most older adults with dementia don’t report their diagnosis

A new study conducted by Yale researchers has revealed that a significant majority of older Americans with dementia diagnoses in their medical records are not acknowledging their condition. Previous research primarily focused on individuals who remain undiagnosed, but this new study examined the opposite scenario: individuals who have been diagnosed but remain unaware or unacknowledging of their dementia.

According to the findings, approximately two-thirds (67%) of respondents who completed self-reporting for themselves reported that no doctor had ever informed them about their dementia diagnosis, despite Medicare claims indicating otherwise. This underreporting rate significantly outpaces that of other prevalent conditions among the same population, such as high blood pressure (23%) or arthritis (17%).

The researchers emphasize that such a high level of underreporting suggests that many of these patients are also likely not accessing essential medical services associated with their diagnosis. Dr. Xi Chen, the corresponding author of the study, explains that a diagnosis recorded in a medical chart but not acknowledged by the patient fails to provide the benefits associated with early detection.

The study, published in the JAMA Network Open, utilized data from the Health and Retirement Study, a nationally representative survey of older Americans that has been ongoing since the 1990s. By analyzing Medicare claims linked to the survey data, the researchers identified individuals aged 65 and older with probable dementia and compared their responses regarding doctor acknowledgments of dementia or memory-related diseases to other conditions, such as arthritis, hypertension, diabetes, and depression.

The study found that underreporting was most prevalent (82%) among patients diagnosed in the earliest stages of dementia, before significant cognitive decline, and was more common among individuals living alone, with lower education levels, or lower incomes, as well as among Black older adults. Conversely, underreporting was less frequent among those who sought care from dementia specialists, received outpatient diagnoses rather than in-hospital diagnoses, or were enrolled in Medicare Advantage plans.

Patients who failed to report their dementia diagnosis were also found to be 30% less likely to visit a doctor for health-related concerns, 37% less likely to receive a flu shot, and 30% less likely to have a will or trust in the following year. However, the researchers noted that these patients continued to report their other health conditions at normal rates, indicating that the underreporting of dementia was not directly linked to memory loss.

The findings suggest a combination of factors contributing to the underreporting, including stigma, difficulty accepting the diagnosis, and insufficient communication from the healthcare system. Dr. Chen asserts that diagnosing dementia is merely the initial step; it is crucial for patients and their families to understand the diagnosis and take appropriate action.

He emphasizes the need for clinicians to have the necessary time, training, and support to communicate dementia diagnoses clearly and compassionately, while also empowering patients and families to seek help. Reducing the stigma surrounding dementia is a collective responsibility, as increased open discussions about the condition will facilitate acceptance and access to available support. The study was funded by the National Institute on Aging.