Dementia: Who is least likely to receive a timely diagnosis in the US?

Evan Walker
Evan Walker TheMediTary.Com |
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Depending on where in the United States a person lives, they may be more or less likely to receive a timely dementia diagnosis. Image credit: ZOA PHOTO/Stocksy.
  • Diagnoses and treatment of dementia vary widely across the United States, according to a new study.
  • In addition to geographic inequities, certain populations tend to be underdiagnosed, including Black and Hispanic individuals, and people aged 66-74.
  • The problem is likely the result of a combination of complex overlapping factors.

A person is much less likely to receive a diagnosis of, and treatment for, dementia in some areas of the United States than in others. This also applies to people in some historically marginalized population groups, according to a new study.

The research, which appears in Alzheimer’s & Dementia, found that the same person would have twice the chance of being correctly diagnosed and treated in some U.S. areas than in others.

The authors of the study undertook an analysis of Medicare Fee-for-Service records for 4,842,034 older Medicare beneficiaries from 2018 to 2019 to observe diagnoses of Alzheimer’s disease and related dementias (ADRD).

They found the intensity of ADRD diagnosis differed from place to place, regardless of population risk factors, such as education level, obesity, smoking habits, and a diagnosis of diabetes.

Diagnosis intensity ranged from 0.69 to 1.47 among hospital referral regions.

Intensity was lowest for Black and Hispanic people, and for those aged 66 to 74 years, the youngest group of people likely to be affected by dementia.

Lycia Neumann, PhD, senior director of Health Services Research at the Alzheimer’s Association of America, who was not involved in the study, told Medical News Today that “Alzheimer’s disease and other dementias are often underdiagnosed, as data in the 2024 Alzheimer’s Disease Facts and Figures report shows.”

“And, as this newly published paper demonstrates, there are important geographical differences in dementia diagnosis rates, which are aggravated by age and racial/ethnic disparities,” she said.

First author of the study, Julie P. W. Bynum, MD, a professor of geriatric and palliative medicine at Johns Hopkins School of Medicine, noted that, “[w]ith our data alone, we cannot say for sure what drives the differences.”

However, she continued, “[t]he most likely cause is differences in the health systems that serve these communities.”

These include “things like confidence and comfort of primary care providers in making the diagnosis, and the availability of dementia specialists to help with challenging cases,” according to Bynum.

The attitudes of patients and their families may also play a role, Bynum further hypothesized.

She said that:

“There could be differences in the attitude and beliefs about dementia of the people being served by those systems. Things like believing dementia is a normal part of aging, or greater concern about stigma, or thinking no one has anything to offer to help them and their family.”

Neumann cited additional complicating factors, such a lack of healthcare access related to health insurance coverage, distance to clinical settings, and a lack of transportation and companionship.

Neumann felt the study offered important, helpful data that may help lead to a solution to the problem. “By integrating claims data with spatial analysis, this study contributes to a better understanding of disparities in access to dementia care, which starts with diagnosis,” she told us.

“Having objective data demonstrating these disparities is essential to inform educational programs and system changes to improve diagnosis rates in an equitable way,” Neumann added.

However, she cautioned: “It is important to consider that the study is based on data from 2018-2019 claims. Advancements in diagnostic tools, such as blood tests, which are less invasive and costly, may help improve access to diagnosis in the future.”

“For example,” Neumann noted, “the Alzheimer’s Association funded research that led to advancements in diagnosis through advanced imaging, fluid biomarkers and blood.”

The Association, she added, is also working now to increase awareness regarding signs and symptoms, and improve access to and quality of diagnosis, treatment, and care.

Neumann is one of the chairs working with a multidisciplinary scientific committee that will be bringing together experts — including researchers and practitioners — from around the country in November 2024 for a conference on Exploring Equity in Diagnosis to advance science and collaboration around identifying, understanding, and addressing disparities in dementia diagnosis.

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