Californians of color disproportionately suffer from late detection of Dementia

Doctors, family and community all have a role in ensuring critical early treatment.

By George B. Sánchez-Tello, Capital & Main

This story is produced by the award-winning journalism nonprofit Capital & Main and co-published here with permission.

Family physician Mukund Premkumar sees patients right in their community — on the second floor of a San Francisco strip mall with free parking. Premkumar treats many Asian Americans, who, according to a 2021 study of California Medicare records published in JAMA Neurology, were the least likely to receive an early diagnosis of dementia or mild cognitive impairment, when treatment options can enable a patient to continue to perform daily tasks and live independently longer. They were also the least likely to be referred to a specialist, such as a neurologist, or to be referred for laboratory tests, the study found.

On average, Premkumar sees about 18 patients a day for 20 or 40 minutes at his clinic, which is part of the UCSF Health medical system. Many of his patients are 65 or older, which puts them at greater risk for dementia. At least 15% of his visitors require interpreters to translate Cantonese, Mandarin, Vietnamese or Korean.

Premkumar recalls treating a 92-year-old Cantonese-speaking patient and diagnosing the person with Alzheimer’s disease. The patient’s family told Premkumar he was less able to converse and more argumentative. After the visit, Prekumar realized the patient’s son had done more speaking on behalf of his father than in prior visits. The patient’s blood tests came back normal for preexisting conditions. Prekumar directed a medical assistant to administer a cognitive test and scheduled an MRI — both standard practice in his office, which is not always the case elsewhere.

The MRI revealed in early spring of 2022 that the patient was in the early stages of Alzheimer’s disease. Premkumar was honest with his concerns: He didn’t know how the disease would progress and worried Alzheimer’s medication would not be safe, given the patient’s heart condition. Premkumar arranged for a social worker to follow up with the family. In addition, he scheduled an appointment with a neurologist and assured the patient’s family he would support them as best he could. 

Premkumar did everything for his patient to diagnose Alzheimer’s disease. But many other patients may not receive such careful attention. People of color disproportionately receive a later diagnosis of dementia, according to the JAMA study, which analyzed Medicare claims data for 10,472 Californians who were diagnosed with dementia or mild cognitive impairment during the first 6 months of 2015. The study found that for every 100 white patients diagnosed with early signs of dementia or mild cognitive impairment, only 46 Asians, 62 Hispanic or 73 Blacks were similarly diagnosed while they were still independent, though increasingly forgetful and confused in daily tasks. Such late diagnoses prevent early treatment or the possibility to slow dementia’s progression. Other doctors may not be as thorough as Premkumar because they lack time, money or training.

Memory loss is correlated with hearing loss, unhealthy diet, poor sleep, chronic illnesses and less rigorous engagement of the mind. Early detection of memory loss can lead caregivers to mitigate such underlying factors to slow cognitive decline. An early start also helps families to plan care, finances and living spaces to ensure the safety of caregivers and patients. In the early stages of dementia, a patient may continue to drive, work and participate in social activities, though she is more forgetful, unable to remember typical words or misplacing everyday objects. Caregivers, loved ones, family members or close friends are often the first to notice symptoms, but a patient’s regular doctor is typically the first to make a diagnosis. To do so, a physician needs time and support.

Late diagnosis often results from a misunderstanding of the early signs of dementia, such as confusing them with the typical memory loss that comes with aging. Doctors may be unaware of the stigma surrounding cognitive disorders within a patient’s community. Patients in some communities may encounter long waits or doctors who are unable to assess and alert patients and their families or refer them in a timely fashion to specialists who can help. This can all be improved.

“The question of why people of color are diagnosed late for dementia is critically important,” said Elena Tsoy, a neuropsychologist and assistant professor at the University of California, San Francisco who led the 2021 study. “There are racial and ethnic disparities we need to understand. I find value in identifying structural factors because we can address that.”

Researchers have called for improvements at every level to remove barriers to early diagnosis of dementia, particularly for patients of color.

More community education is needed. Advocates have noted public health educators, like Tia Delaney-Stewart, a nurse and director of diversity, equity and inclusion at the Alzheimer’s Association California Southland chapter. Public health educators visit places where community members gather, such as cigar lounges, to talk about dementia. Experts say community-tailored programs are key to effectively educating groups at risk.

Health care providers, doctor’s offices and health care networks generally need to hire more staff and reconsider how they care for patients. A study last year found traditional one-on-one patient care would require doctors to work almost 27 hours a day. But a team-based approach to patients, in which nurses and medical assistants are trained and empowered to take on more tasks such as medical record updates and prescription orders, could free doctors to better focus on patients.

Researchers at UCSF and Northwestern University improved early detection of dementia when medical assistants administered a memory test on an electronic tablet. Tests administered on such tablets resulted in faster results compared with pencil-and-paper tests.

Researchers say specialists such as neurologists need to find better ways to meet regularly with doctors to provide teaching, training and workshops to improve their ability to recognize and diagnose dementia. Standard practices such as reading medical journals and attending conferences aren’t enough.

Premkumar and his UCSF colleagues are taking the kinds of approaches that can help close the racial gap in early dementia diagnosis and treatment. To do so throughout California, researchers and advocates argue, patient care must be reimagined and backed up with funding to support it. It will also take time, which is precious to tomorrow’s dementia patients, who are likely to be disproportionately people of color.

Copyright 2023 Capital & Main

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