A Yale study found that two-thirds of patients diagnosed with dementia were not aware they had the cognitive disease, or if they did, they chose not to report it.
Researchers in a Yale study, published in the Journal of the American Medical Association Aug. 26, looked at a broad survey of older Americans — the Health and Retirement Study, supported by the National Institute on Aging.
“If they were diagnosed in the hospital system, they are more likely to underreport,” said Xi Chen, associate professor of health policy and health economics at Yale University, and the study’s author.
"Clinicians really need the time, training and reimbursement to disclose the dementia diagnosis, because we know that in a lot of medical settings, there's a long line of patients, and doctors do not have time," he said.
People on Medicare or Medicaid, those who lived alone and lacked a caregiver and those without a high school education were more likely to not report their dementia diagnosis, the study found. Black people also had higher odds of not reporting a diagnosis.
People who didn't report having dementia were more likely to report other conditions, such as hypertension, arthritis, diabetes and depression.
"We are comparing apples to apples," Chen said, explaining depression also carries some level of social stigma.
"We still see underreporting of dementia is way higher than underreporting of depression," he said.
Dr. Arman Fesharaki-Zadeh, a neuropsychiatrist at the Yale School of Medicine, and assistant professor of psychiatry and neurology, said cognitive decline carries an element of shame and worry over the loss of one’s independence.
“I've had patients who come in for the first time, they're brought in by their wife or their husband or their daughter or son, and one of the first questions I get asked is, ‘Doctor, are you about to put me in a nursing home?’” Fesharaki-Zadeh said.
That’s not the only reason for underreporting. Fesharaki-Zadeh said a neurological condition in dementia patients, called anosognosia, leads to decreased awareness of one’s medical condition.
For some patients with Alzheimer's disease, dementia care has entered a "new era" following the approval of two anti-amyloid therapies that can slow down the progression, Fesharaki-Zadeh said.
The Alzheimer’s Association encourages people to talk to their doctors about memory concerns.
"We recommend that resources and support are included as part of the diagnostic discussion," said Carolyn DeRocco, vice president of programs and education for the association's Connecticut chapter. "People need to know they are not alone in their journey.”
Resources: People can call the Alzheimer’s Association, CT Chapter, 24/7 Helpline at 1-800-272-3900. They can attend a support group or take a class to learn about FDA-approved treatments for people in the early stages.
