Researchers pinpointed the areas in the U.S. where they’re least likely to receive a dementia diagnosis.
More than 7 million Americans are living with dementia, and these numbers are set to double by 2060. Experts say that getting an early dementia diagnosis helps people prepare for the future, receive early treatment, and implement lifestyle changes that could improve health. But in some places, studies show people don’t have access to the healthcare they need.
A study recently published in Alzheimer’s & Dementia showed regional differences in the likelihood of receiving a dementia diagnosis — variance that is likely due to healthcare access.
“The number of people who obtain a formal diagnosis is different across regions,” University of Michigan professor and study author Dr. Julie Bynum told Being Patient. “Some of the difference likely comes from health system factors — like how accessible is healthcare and specifically how available are clinicians with experience in diagnosing and taking care of people with dementia.”
For the study, Bynum and her colleagues examined Medicare claims from 2018 to 2019 to estimate how often people 66 or older were diagnosed with dementia across different geographies. Then, they compared these numbers to estimates of how many new cases of dementia should be expected, taking into account age, ethnicity, and modifiable risk factors like alcohol intake, education level, and high blood pressure.
What the researchers found is that, when it comes to getting a diagnosis, geography matters: Depending on a person’s ZIP code, they might be as much as 28 percent less likely to get a timely diagnosis, or, if they’re lucky, 36 percent more likely — a more than 60-point span.
Ideally, the number of people projected to be diagnosed with dementia based on risk factors should match up to the number of expected cases being diagnosed in the Medicare data. In some places, there was a good match between expected rates and actual rates of dementia diagnoses: for example, Alaska, and also Connecticut. In other states, including Florida and Arizona, the researchers found fewer people were receiving diagnoses than expected. In Wichita Falls, Texas, there were more dementia diagnoses than expected. Meanwhile, in Southern Texas, people in regions with higher rates of dementia were less likely to receive a diagnosis.
Maria Aranda, a professor at the University of Southern California who was not involved in the research, told Being Patient that the study “raises important questions regarding differences in access and health care practices” across the country. She added that some regions may be home to specialty diagnostic research centers or have more healthcare providers trained to diagnose dementia.
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According to Bynum, there was a lot of variation for people aged 66-74, meaning that doctors in some regions were much better at diagnosing dementia early than doctors in other regions.
“Making such a high-stakes diagnosis, especially early in the disease process when it is challenging to sort out from normal cognitive aging, can create hesitancy to address cognitive impairment,” Bynum said.
The researchers also found that for Black and Hispanic Americans, who already have a higher risk of developing dementia than their white neighbors, geography could drive further disparity.
Bynum theorized that part of this discrepancy is that these racial groups may be less likely to seek care for a variety of cultural reasons.
Mollie Richards, who has worked to reduce the stigma within Black communities for more than 25 years, told Being Patient that many people within the community bring up examples of historical experimentation on Black Americans. For example, in the Tuskeegee experiment, 600 Black men were told they were receiving treatments for syphilis, when in actuality the doctors watched them progress through the disease for 40 years, continuing into the 1970s, despite the availability of safe treatments.
Many doctors still may not be comfortable speaking with Black patients, making them less likely to go back for appointments. Even today, many doctors are 2.5 times more likely to include negative descriptors in African Americans like “agitated,” “angry,” “challenging,” or “non-adherent.”
What needs to change
Experts say public policy and healthcare access are key factors to solving these discrepancies. While it’s far from a long-term solution, Bynum recommends that people concerned about cognitive decline for themselves or for family members take an active role. They “may need to put in some extra effort in seeking out and communicating their concerns with their primary doctors,” she said.
“That will require training of clinicians, new approaches to incorporating care partners into routine care, and creativity on how to meet the growing population needs with the small stable of dementia care professionals we have now and are likely to have in the future,” she said.
