New study links dementia diagnosis rates to where you live in the US

• 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.

Why are there dementia diagnostic discrepancies?

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.

Who are the underdiagnosed groups?

For Black and Hispanic people, reported Bynum, “there are many studies across diseases [that suggest] lower access [to healthcare], [as well as lower levels of] care seeking and diagnosis, and all of those social determinants of health apply to dementia, too.”

“On top of that,“ she added, “there are studies that show the level of stigma associated with a diagnosis is different across racial and ethnic groups, which prevents people from seeking a diagnosis.”

There are other issues that may result in under diagnoses for older people in the 66–74 years age range.

Bynum noted that: “First, clinicians may not suspect dementia because it is, in fact, less common in younger people. Second, the diagnosis is tricky to make in earlier stages when symptoms can be subtle and have other contributors, like depression.”

In addition, she noted, people who are still working may seek to avoid a diagnosis for fear of what effect it may have on their livelihood.

What does this dementia study bring to the table?

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.

What can people in underserved areas do?

Should one be living in an area where their concerns about a dementia diagnosis for a family member or themselves are not being addressed, there are things that can be done.

Beyond educating oneself on the signs of dementia, one may need to seek informed experts’ assistance beyond one’s regular medical team. This may involve appointments with doctors who specialize in caring for patients with dementia.

There may be nearby community organizations serving the elderly, senior centers that can provide guidance or local — or at least not too distant — Alzheimer’s Association chapters.