Imagine: You and your sister are 66-year-old twins on Medicare who share the same family history of Alzheimer’s disease, making an early diagnosis critical for long-term planning and preventive health care. Since Medicare provides coverage for a cognitive screening as part of each year’s wellness visit, you believe that diagnosis, if needed, will occur.
Let’s say you live in Hartford, Connecticut. Your sister is some 26 miles away in Springfield, Massachusetts — so close that you often share Sunday dinners. Yet according to a new study, you are 18% more likely to obtain a diagnosis of dementia in Hartford than your sister in Springfield.
How could this be? According to Medicare data, the health care system in Connecticut may be doing a better job than Massachusetts of screening and diagnosing Alzheimer’s disease or related dementias and referring patients to specialists, said lead study author Julie Bynum, a professor of internal medicine and geriatric and palliative medicine at the University of Michigan Medical School in Ann Arbor.
Such disparities happen across the United States, Bynum said. In fact, depending on your ZIP code, you may be twice as likely to be diagnosed in some areas of the country as others.
Compared with the national average, people who live in ZIP codes with the lowest diagnostic intensity — a measure of how often doctors offer tests and treatments to patients — are 28% less likely to get a timely diagnosis, the study found.
Those who live in regions with the highest diagnostic intensity — where physicians may be more aggressive in their level of care — are 36% more likely to be diagnosed with Alzheimer’s or another form of dementia, according to the study.
“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.”
Bynum had access to data broken down by ZIP code for the purposes of her research, but she was unable to publish the ZIP codes due to Medicare privacy restrictions. A map below, which CNN created from the study, provides a bird’s-eye view of which states or regions fared better or worse.
An ‘unjust’ reality
The study highlights how patients are getting different care “depending on where they live and who they are, and that is unjust,” said Dr. Eseosa Ighodaro, an incoming assistant professor of neurology at Atrium Health Wake Forest Baptist Medical Center and the Maya Angelou Center for Health Equity in Winston-Salem, North Carolina.
“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, who was not involved in the new study.
“If we don’t do something about these disparities, there are people who are going to be left out of being able to receive these disease-modifying treatments,” she added. “That is horrible.”
An early diagnosis also allows people to be eligible for clinical trials, receive specialized treatment and care, and improve their quality of life, said Lycia Neumann, senior director of health services research for the Alzheimer’s Association. She was not involved in the new study.
“Everyone has exactly the same right to receive a diagnosis of this nature — that’s the first step for them to understand why they are noticing signs and symptoms and to change how they manage their daily lives and even their relationships with their family,” Neumann said.
“Knowing where disparities exist is the first step for us to be able to address them,” she added. “We need to do better. We need to ensure that these differences don’t exist.”
Move across the country, get a different diagnosis
Traditionally, research has shown the largest percentage of Alzheimer’s and dementia cases occur in the Southeast, known as the “stroke belt” because deaths from stroke are two to four times higher in those states than in other regions, according to the US Centers for Disease Control and Prevention.
“However, obesity is widespread across the US, as is high blood pressure, type 2 diabetes, heart disease and other conditions that contribute to dementia,” Bynum said. “So why would the majority of diagnoses be in the South?”
To find out, she and her team spent years analyzing Medicare claims data from each of 306 hospital referral regions in the United States. A hospital referral region is a collection of ZIP codes where the hospitals, physicians and specialists in that area provide most of the health care for residents.
The team compared 2019 Medicare dementia diagnoses in people 66 and older in each region with the number of expected new cases in that geographical area based on potentially modifiable risk factors for dementia. Those risk factors include alcohol consumption, lower levels of education, depression, diabetes, high blood pressure, obesity, smoking and low social contact.
Known demographic and health risk factors were then removed, leaving the team with a measure of diagnosis intensity that looked different than the traditional view. No longer was all the emphasis on the Southeast; instead, the map showed a picture of diagnosis discrepancies across the nation.
Alaska, Connecticut and the Texas Panhandle, for example, had excellent matches between dementia diagnoses and what might be expected for their areas, according to the study published recently in the journal Alzheimer’s & Dementia.
Surprisingly, Florida did not.
“Estimates are anywhere from 30% to 40% of people 80 and older have a form of dementia, so you’d assume that Florida, which has a really old Medicare population, would have a higher rate of diagnosis than other areas,” Bynum said. “That’s not what we found.”
Hospital regions also differed widely in the number of newly diagnosed cases of Alzheimer’s or another dementia. One region only diagnosed 1.7% of its older population, the lowest the study found, while another diagnosed the highest number of cases at 5.4%.
The largest disparities were found in people in the youngest age category of 66 to 74 — when lifestyle changes and early-stage Alzheimer’s medications might have the most benefit — and in Black and Hispanic people, who are at much higher risk than White people 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
Even though all patients in the study were on the same insurance plan — Medicare — differences exist between health systems concerning how many hospitals and specialists accept the government’s fee-for-service health insurance program.
“If you live in a city where nearby hospitals do not accept Medicare versus living in a different city where hospitals do accept Medicare, that could explain some of the disparity,” Ighodaro said. “Both patients have Medicare, but they’re getting different access and treatment.”
Even if your local health system does accept Medicare, it doesn’t mean the program will cover the tests necessary to confirm a suspected diagnosis, she added.
“Biomarkers, neuropsychological testing, MRI or PET scans are not always covered by Medicare or even other insurance,” Ighodaro said. “If I, as a neurologist, cannot do these exams and order these tests, it’s going to be difficult for me to make the diagnosis of dementia. Yet without that diagnosis, patients are not eligible for these disease-modifying medications that could add to their quality of life.”
Cognitive decline also carries stigma in some communities and cultures and may have an impact on a person’s work or family relationships, Bynum said. That may leave some doctors — and patients — uneasy about pursuing a diagnosis. Then there’s the issue of teasing out signs of cognitive decline, which can be difficult at times.
“If you think about the older adult who comes in, they have three, four, five chronic conditions and multiple bodily complaints, all of which may impact their cognition,” Bynum said. “I’m a geriatrician in practice, and I can tell you diagnosing cognitive decline is not always straightforward.”
How can people make sure they are given the cognitive tests they require during yearly wellness visits? Be your own advocate, Ighodaro said. Call in advance to find out if a doctor or hospital provides such assessments as part of the visit and keep looking for one that does, she said. Another tip: Call an insurer in advance to determine which types of additional cognitive tests are covered if indeed they are required.
“If one has the slightest concern about their cognition or that of a family member, go get checked out,” Ighodaro said. “It’s better to be reassured by a physician there’s nothing to worry about than wait and not be eligible for these new medications.
“Remember, it’s not the patient’s job to determine ‘Is this dementia or not?’ It’s our job.”