Study shows barriers to dementia diagnosis based on race, ethnicity, and location

Getting dementia diagnosed can be a long and difficult process for anyone, but some may face additional challenges based on race or ethnicity and where they live, according to a study led by Washington State University researchers.

The study of nearly 95,000 Washington state residents found that people living outside of urban areas as well as Native American and Hispanic people face longer travel distances to be seen by neurologists. The researchers said these disparities could be contributing to delayed diagnoses, which can result in higher costs of care, reduced chances of preserving cognitive function and lower quality of life for dementia patients.

We are facing an increasing demand for physicians who can meet the needs of people with Alzheimer's disease or related dementias as the number of people diagnosed is rising. Given this added burden of access in rural and minoritized populations, we need to better understand the barriers people face in accessing care so we can help them achieve better dementia outcomes."

Solmaz Amiri, lead study author, researcher in the WSU Elson S. Floyd College of Medicine and the Institute for Research and Education to Advance Community Health (IREACH)

Published in Alzheimer's & Dementia: The Journal of the Alzheimer's Association, Amiri and her coauthors analyzed 2011–2021 Washington state death records for people who were identified as having Alzheimer's disease or related dementias. Calculating the distance from each person's home to the closest neurologist, the researchers showed that people in urban areas lived an average of 9 miles from a neurologist. That distance increased to 45 miles for residents of suburban areas, 88 miles for residents of small towns and 100 miles for rural residents. They also saw disparities when comparing travel distances by race and ethnicity, finding that Native American and Hispanic people had to travel around 28 and 22 miles respectively to reach a neurologist, versus between 7 and 17 miles for other racial groups.

"As dementia progresses, the need for people to access a physician increases. To these people, even 17 miles is a large distance that presents a significant burden, so you can imagine how hard it would be to have to travel 100 miles to see a neurologist," Amiri said.

She said the researchers' findings could help inform the placement of future medical resources such as neurology practices, residency programs and medical student rotations. Strategically placing these inside so-called hot spots-;clusters of areas identified in the study as having significantly longer driving distances-;could help reduce disparities in dementia outcomes.

Other potential solutions include offering people living in rural areas care via telemedicine or through mobile health care units. Better preparing rural primary care physicians to diagnose and care for people with dementia is also essential, Amiri said. A recent Alzheimer's Association survey of primary care physicians showed that although more than 80% reported providing dementia care, most had received little or no training in that area and many were not confident in their care for patients with Alzheimer's and other dementias.

Amiri noted that other factors that limit provider access could not be examined in this study since data on these were not readily available. For example, people may not have insurance, their insurance plan may not be accepted by certain providers and there may be long waits for appointments.

Cultural differences among racial groups may play a role as well. The study showed that Black people live closer to neurologists than other racial groups, yet previous research has shown that they experience large disparities in dementia diagnosis and outcomes. Given that Black people have historically been subjected to racism, healthcare segregation and secret experimentation, one possible explanation may be that they are less likely to seek out neurology care due to an inherent mistrust of white-dominated healthcare settings.

The researchers are planning additional research to better understand how dementia outcomes may be impacted by various factors, including a recently funded study that will relate cognitive outcomes in Native Americans to physician access and neighborhood characteristics.