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In a new observational study conducted at the University of Michigan, researchers have identified significant differences in the likelihood that a patient receives a formal diagnosis for dementia depending on geographic location. Published Aug. 16 in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, the study’s results suggest that diagnoses vary by nearly 100% in certain regions.
Dementia, an umbrella term for a series of diseases that impact memory, cognition and daily brain function, is one of the leading causes of death in the United States. Patients with dementia may experience symptoms such as forgetfulness, confusion and changes in personality and social behavior. There is currently no cure for the majority of dementia causes, but medications and therapies can help temporarily curb symptoms.
In a 2022 study conducted at Columbia University in partnership with the University of Michigan, researchers found that one in 10 Americans over the age of 65 had dementia. As the number of dementia patients continues to rise, it has become more important that patients receive an official diagnosis to gain access to available treatments.
Previous studies have found that certain risk factors such as cholesterol levels, tobacco and alcohol use, age and genetics influence the chances of developing dementia. Dr. Julie Bynum, professor in the U-M Division of Geriatrics and Palliative Medicine and first author of the study, said in an interview with The Michigan Daily this new study sought to control for these risk factors and isolate the impact of regional variations in access to health care, the structure of different health care systems and culture on the dementia diagnosis process.
“In our study, what we did was mathematically (use) epidemiologic methods to remove those things that we would expect to cause (diagnoses) to be different, and see what’s left,” Bynum said. “And what’s left are things that aren’t measured, like health system differences, practice variation, those kinds of things.”
To measure the likelihood of a diagnosis, researchers used the Dartmouth Atlas Project’s hospital referral regions — 306 areas within the United States that contain at least one hospital that performs cardiovascular and neurosurgery procedures — to divide the country into sections. For each HRR, the team calculated the diagnostic intensity, or rate of diagnosis based on a ratio of observed to expected numbers of new dementia cases using Medicare data. Bynum, who previously worked at Dartmouth College, said she helped to develop the idea of diagnostic intensity.
“We developed studies that showed that the way health care is practiced influences how many people receive a diagnosis,” Bynum said. “Because you know there’s two things that influence whether somebody gets a diagnosis: whether they have a disease … and whether they get to the health system and get a diagnosis. So that idea, we had coined previously.”
Slim Benloucif, a senior database analyst and programmer for the U-M Division of Geriatrics and Palliative Medicine and second author of the study, extracted and aggregated data collected by the research team. In an email to The Daily, Benloucif wrote that the researchers wanted to compare the varying diagnostic intensities of health care systems across the country.
“We wanted to examine the degree to which residing in a low versus high diagnostic intensity region impacts healthcare use and quality among older adults with (Alzheimer’s disease and related disorders),” Benloucif wrote.
The study found that patients in HRRs with the lowest diagnostic intensity were 28% less likely to receive a diagnosis than the national average, while those in the highest diagnostic intensity areas were 36% more likely to be diagnosed with Alzheimer’s disease and related disorders.
Diagnostic intensity also varied greatly across the country and by race, with Black and Hispanic patients having a higher coefficient of diagnostic intensity variation than other racial groups. Those between 66 and 74 years old — younger than the average age of dementia diagnosis — experienced significant variation as well.
Bynum theorized about the reasons behind this variation and said that it may be both individual communities and less-specialized providers that contribute to lower rates of diagnosis.
“We don’t think about (how) maybe doctors in some areas are less comfortable making this diagnosis, or they don’t have the doctors to refer to, so we see fewer diagnoses because they’re just not making them when they see them,” Bynum said. “Or alternatively, the communities that are being served have a lot more fear or stigma associated with this disease, and maybe they don’t come forward in anything. So it’s two pieces of that puzzle: What’s going on in the community, and how does the health system serving that community respond if somebody does have symptoms if they bring them forward?”
In addition to encouraging patients to push for treatment, Bynum also said she would like the health care community to become more comfortable and familiar with the diagnosis process to meet the growing need for dementia care.
“When we have a mismatch between the dementia specialists and the population need, we need to find some ways to connect and use those resources we do have to meet the needs of the population,” Bynum said. “Our clinicians, our primary care docs … we have to have a level of comfort with the routine for the majority of cases. We have to develop the ability to recognize it, to get confident in making a diagnosis, have the community resources to refer to, and that’s going to take a longer time to get there, but it’s what I hope happens.”
Music for Dementia, a statewide organization with chapters at high schools and colleges, sends students to local nursing homes to play live and curated music for residents with dementia. LSA junior Mehul Gautam, president of the U-M chapter of Music for Dementia, said in an interview with The Daily that diagnosing dementia and providing care early could help those coming from underresourced communities.
“A big cause of early aging and dementia is loneliness,” Gautam said. “People in hospice centers where I work, they didn’t live with their families before they went to the hospice center. … Being alone and not really doing anything very active for their brain progresses the aging process, I would say. So I think providing care early and recognizing it early, especially in low-income areas where children can’t afford to take care of their parents, that’s really important.”
Sarisha Mahajan, U-M alum, Michigan Medicine clinical research assistant and research director of Music for Dementia, said increased access to treatment and resources following a dementia diagnosis would also ease the burden off family members and caretakers of those with the disease.
“I think it’s especially important for people to get a diagnosis and find ways to either help treat or care for people with dementia,” Mahajan said. “As a family or the caretaker, it can be really difficult to care for someone with dementia, and it can be draining on the people taking care of the person. So if they’re able to get a proper diagnosis and get more resources to understand the best way to care for someone with dementia and interact with them, I think that’s really important because it can get frustrating and cause burnout.”
Bynum said she hopes people with symptoms will continue to seek out formal diagnoses even if their HRRs may make the process difficult.
“In the short term, there’s a message to patients and families … that it is hard to get a diagnosis,” Bynum said. “It can be harder in some areas than others, so don’t give up. Seek the help you need, and you may need to find special providers who actually have experience.”
Daily Staff Reporter Marissa Corsi can be reached at macorsi@umich.edu.