Disparities in Dementia Diagnosis Across U.S. Regions
A new study highlights significant regional disparities in dementia diagnoses across the U.S., with diagnosis rates varying by up to 36% depending on location. Factors such as healthcare system quality, diagnostic intensity, and patient demographics contribute to these differences, potentially leaving many undiagnosed and without access to crucial treatments.
Imagine you and your sister are 66-year-old twins on Medicare, sharing a family history of Alzheimer’s disease. An early diagnosis is crucial for long-term planning and preventive health care. Medicare offers coverage for cognitive screening during annual wellness visits, leading you to believe that a diagnosis, if necessary, would be timely.
However, if you reside in Hartford, Connecticut, and your sister lives just 26 miles away in Springfield, Massachusetts, a new study reveals you are 18% more likely to be diagnosed with dementia than your sister.
The role of healthcare systems
Lead study author Julie Bynum, a professor at the University of Michigan Medical School, explains, “The health care system in Connecticut may be doing a better job than Massachusetts in screening and diagnosing Alzheimer’s disease or related dementias and referring patients to specialists.”
Such disparities are not unique to Connecticut and Massachusetts but are prevalent across the United States. Depending on your ZIP code, you may be twice as likely to receive a dementia diagnosis as those in other areas, the study found.
Diagnostic intensity and its impact
The study highlighted that people living in ZIP codes with the lowest diagnostic intensity—how frequently doctors offer tests and treatments—are 28% less likely to receive a timely diagnosis compared to the national average. Conversely, those in regions with the highest diagnostic intensity are 36% more likely to be diagnosed with Alzheimer’s or another form of dementia.
“There’s some sort of behavior in different health systems in the way we look at people with this disease, regardless of your level of risk,” Bynum said. “Without that diagnosis, you can’t get educated, you can’t prepare.”
Although Bynum had access to ZIP code-specific data for her research, Medicare privacy restrictions prevented her from publishing it.
An ‘unjust’ reality
The study underscores a critical issue: patients receive different care based on their location, which Dr. Eseosa Ighodaro of Atrium Health Wake Forest Baptist Medical Center deems “unjust.”
“This research is timely because now we have medications we didn’t have before 2021 that we can give patients who have mild cognitive impairment due to Alzheimer’s disease,” said Ighodaro. “If we don’t address these disparities, many will miss out on these disease-modifying treatments.”
Early diagnosis also allows for participation in clinical trials, specialized care, and improved quality of life, noted Lycia Neumann from the Alzheimer’s Association.
“Everyone has the same right to receive a diagnosis of this nature,” Neumann said. “Knowing where disparities exist is the first step for us to be able to address them. We need to do better.”
Regional variations in diagnoses
Historically, the Southeast, known as the “stroke belt,” has shown the highest percentage of Alzheimer’s and dementia cases. However, conditions contributing to dementia, such as obesity and high blood pressure, are widespread across the U.S.
To explore this, Bynum and her team analyzed Medicare claims data from 306 hospital referral regions. They compared 2019 Medicare dementia diagnoses with expected new cases based on modifiable risk factors like alcohol consumption, education levels, depression, and diabetes.
The study revealed that regions like Alaska, Connecticut, and the Texas Panhandle had excellent matches between expected and actual dementia diagnoses. Surprisingly, Florida did not.
“Estimates suggest that 30% to 40% of people 80 and older have a form of dementia, so you’d assume that Florida, with its older population, would have higher diagnosis rates. That’s not what we found,” Bynum said.
Significant disparities among different demographics
The study found the largest disparities in diagnosis rates among younger seniors (ages 66 to 74) and in Black and Hispanic populations, who are at higher risk for Alzheimer’s and other dementias.
“Even within the Black community, you see twofold differences in an individual’s likelihood of getting diagnosed depending on their ZIP code,” Bynum said. “So, it’s not just those group characteristics. There’s something going on.”
Insurance coverage, stigma, and overworked physicians
Despite all patients being on Medicare, differences in how health systems accept and process Medicare insurance contribute to diagnostic disparities. Some regions may have fewer hospitals and specialists accepting Medicare, impacting access to necessary tests like MRI or PET scans.
“Biomarkers, neuropsychological testing, MRI or PET scans are not always covered by Medicare or even other insurance,” Ighodaro said. “Without these, diagnosing dementia becomes challenging, and patients miss out on treatments that could improve their quality of life.”
Cognitive decline carries stigma in some communities, making both patients and doctors hesitant to pursue a diagnosis. Additionally, diagnosing cognitive decline can be complex due to overlapping symptoms from other chronic conditions.
Advocating for your health
Ighodaro advises patients to be proactive. “Call in advance to find out if a doctor or hospital offers cognitive assessments as part of the visit and keep looking for one that does. If concerned about cognition, get checked out. It’s better to be reassured than to miss out on treatments.”
“Remember, it’s not the patient’s job to determine ‘Is this dementia or not?’ It’s our job,” Ighodaro concluded.