Black Patients Are Less Likely to Receive a Timely Dementia Diagnosis, Despite Having the Highest Risk

The US has a history of racial disparities in healthcare, and dementia is no exception. Despite showing severe neuropsychiatric symptoms such as hallucinations and delusions, research suggests Black patients are nearly 65 percent less likely to receive an Alzheimer's Disease Related Dementias (ADRD) diagnosis in their first medical visit compared to white patients.

"Older African Americans are about twice as likely to have Alzheimer's or other dementias than whites. Hispanic Latinos are one and a half times more likely than whites to have Alzheimer's or another type of dementia," explained Carl V. Hill, PhD, MPH, the chief diversity, equity, and inclusion officer for the Alzheimer's Association.

The findings, which were based on a 2021 study published in the journal Alzheimer's & Dementia, were part of a health update published by JAMA. The update highlights the inequity of dementia diagnoses among African Americans as well as the inability to study this issue, as most ADRD studies funded by the National Institute of Aging (NIA) recruited more white than Black individuals. In other words, most studies are not representative of the population most affected by dementia and early signs of cognitive impairment.

Factors Impacting Diagnosis

In addition to dementia being far more common among Black individuals, there are other factors contributing to the significant number of missed diagnoses in this population. Hill said socioeconomic and sociocultural factors play an important role as well.

"Genetic factors do not account for the large differences in disparities that we see among racial and ethnic groups. It's important to ‌look at access to care, access to quality care, and dementia care," Hill said.

Access to care in particular is a significant issue. A report from the Kaiser Family Foundation, for instance, found that "health coverage plays a major role in enabling people to access health care and people of color have faced longstanding disparities in health coverage that contribute to disparities in health." The same report notes that while the passage of the Affordable Care Act has brought about some improvement in coverage levels, people of color continue to be at a much higher risk of being uninsured compared to white people. As of 2018, the uninsured rate among Black people was 9.7 percent while it was just 5.4 percent among those who are white.

What's more, a 2021 Alzheimer's Association report on racial attitudes towards dementia care found that a third of Black Americans believe that discrimination would be a barrier to receiving Alzheimer's care. Half of Black Americans also said they experienced healthcare discrimination when seeking care.

"Receiving a proper and timely diagnosis is fundamental to optimal Alzheimer's care and if these populations are perceiving and experiencing discrimination in the healthcare system, and different things, this is a serious call to action that we must pay very close attention to," Dr. Hill tells Health.

What the Research Shows

The JAMA authors analyzed data from studies on early diagnoses of dementia conducted between 2005 and 2020. The studies took place across 39 Alzheimer's Disease Research Centers, where they recruited ‌5,700 non-Hispanic Black participants and 31,225 white participants. There was a disproportionate number of men in the study, with more than half of white participants being men, while men only made up 27 percent of Black participants.

Their analysis found that 26.8 percent of Black participants received an early diagnosis compared to 36.1 percent of white participants. However, Black participants were more likely to present with various neuropsychiatric symptoms during their first visits. The odds of experiencing delusions and hallucinations were twice as high in Black participants with dementia. Aggression, motor disturbances, changes in eating, and increased irritability were also higher among Black participants who were later confirmed to have dementia.

Black participants were also more likely to have risk factors, such as lower education, that would suggest a greater chance of developing dementia. About 39 percent of Black participants completed 12 or fewer years of school compared to their white counterparts. Black participants were also more likely to have a high BMI, hypertension, and diabetes.

Despite all of the factors pointing to an overall higher risk of developing dementia, the team calculated a 64.9 percent lower chance of Black people receiving a dementia diagnosis at their first visit.

Additionally, having a delayed diagnosis worsens the racial disparities in dementia in Black Americans, as it delays their chance of getting ongoing care and support following their diagnosis. Further, the lack of research on dementia in the Black community makes it difficult to have a comprehensive understanding of their risk profile for dementia. As a result, Hill says it's no surprise that Black people and other underserved populations tend to "live sicker and die younger."

He says most Black Americans feel they're not being heard by their doctor. Having symptoms disregarded during a first visit can breed fear someone will mistreat them when seeking ‌dementia care.

"By 2050 nearly 40 percent of the older population will be non-white Americans so we need the next generation of health providers to reflect the changing demographics and that includes creating standards for doctors to understand the backgrounds and experiences of different racial and ethnic groups to improve care and outcomes," Dr. Hill explains.

What to Know About Early Signs of Dementia—And When to See a Doctor

One of the earliest signs of dementia or Alzheimer's disease is short-term memory loss. According to the World Health Organization, dementia symptoms slowly appear and build up over time with more instances of misplacing objects and losing track of time.

Of course, it's normal to misplace your keys or forget a person's name every once in a while. But Gabriel Zada, MD, a neurosurgeon and associate professor of neurological surgery at Keck Medicine of USC, says lapses in short-term memory become concerning when accompanied by changes in mood or behavior like different sleep patterns.

"Starting with a PCP is always a great idea. And if you're really concerned but hitting a wall, you can jump to a specialist, but it's always a good idea to start with a PCP or internist," Dr. Zada told Health.

Not everyone needs to see a doctor for the occasional memory lapse, but you should seek medical advice if you're older as the risk of Alzheimer's doubles after 65. "We worry about early onset dementia in the 40s and 50s. It's very rare to have dementia in your 20s, but if you're having short-term memory issues, it's most likely something else going on, not dementia," Dr. Zada said.

For example, forgetting the name of a person you met a decade ago differs from forgetting the name of your spouse of 30 years. Worsening memory issues may also include getting lost in familiar places, such as forgetting your route from work to your house.

Because Alzheimer's and dementia first target the hippocampus, a brain region involved in learning and memory, your ability to make sound judgments along with other cognitive skills worsen as your brain has trouble filtering and remembering new information. Losing your memory may also cause a change in your personality. Some may act as the complete opposite of their old self and others may experience increases in anxiety or depression.

People with medical conditions that increase their risk of Alzheimer's should see a doctor immediately if their memory fades. Dementia is more common among Black Americans because they are more likely to have undiagnosed conditions such as hypertension and diabetes which are associated with dementia, said Dr. Zada.

"But despite that, dementia remains less diagnosed in African Americans and that's where the disparity issues come in," explained Dr. Zada. Conditions like diabetes and high blood pressure, which are more common in the Black community, lead to increased diagnoses of vascular dementia among Black people. Fortunately, with routine monitoring healthcare providers can detect health conditions like diabetes and high blood pressure early, which can help prevent serious illness later in life.

While we're far from finding a cure for Alzheimer's or dementia, there are new treatments on the horizon. "Dementia is a common disease and is one of many brain diseases that cause racial disparities," Dr. Zada said. "By raising awareness around this issue, it may help to even the playing field to increase access to diagnostics and treatments."