En español | For the estimated 6 million older Americans living with Alzheimer's disease, race and ethnicity are a barrier to quality medical care, according to a new report from the Alzheimer's Association.
The special report on “Race, Ethnicity and Alzheimer's in America” found that 66 percent of Black Americans believe it would be hard for them to get what they perceive as “excellent” care for the brain disease. That view was shared by 40 percent of Native Americans, 39 percent of Hispanics and 34 percent of Asian Americans. All were also likely to distrust medical research and unlikely to believe health care professionals empathize with them.
"Clearly, discrimination, lack of diversity among health care professionals, and mistrust in medical research create significant barriers to care and demand the country's full attention,” Carl V. Hill, Ph.D., MPH, chief diversity, equity and inclusion officer of the Alzheimer's Association, said in a statement.
The special report, which was released in conjunction with the 2021 Alzheimer's Disease Facts and Figures report, contains a trove of information on racial and ethnic disparities related to Alzheimer's disease and dementia gleaned from surveys of U.S. adults and caregivers of adults aged 50 and older with cognitive issues. The surveys were conducted in October and November 2020.
Barriers to quality care
Regardless of race or ethnicity, survey respondents see affordability as the most likely barrier to excellent care and support for Alzheimer's or dementia — ranging from 70 percent of Asians to 52 percent of Blacks. To a lesser extent, Americans also see lack of health insurance coverage, services missing in their community, and a lack of family and community support as likely barriers.
Blacks, however, were most likely to perceive racial and ethnic discrimination as a barrier to receiving quality Alzheimer's care, with 36 percent saying so, compared to 19 percent of Asians, 18 percent of Hispanics, 12 percent of Native Americans and just 1 percent of whites.
A significant concern among racial and ethnic groups is a perceived lack of empathy from health care providers. Just 48 percent of Blacks feel confident they have access to providers who understand their ethnic or racial background and experiences. That compares with 47 percent of Native Americans, 49 percent of Hispanics and 63 percent of Asian Americans.
Half or more of Black, Asian, Hispanic and Native American caregivers said they have experienced discrimination while providing care. According to the report, the most common complaint was that health care providers or staff do not listen to them because of their race, color or ethnicity — a feeling that was especially true for Black caregivers (42 percent). About a quarter also said they were treated with less courtesy and respect than other caregivers.
Half of Blacks said that they had personally experienced discrimination in health care, although most (41 percent) said it occurred only from time to time. Just 9 percent said it happened regularly. The percentages for Native Americans were 33 percent occasionally and 9 percent regularly; for Asians, 31 percent occasionally and 3 percent regularly; for Hispanics, 27 percent occasionally and 6 percent regularly; and for whites, 8 percent occasionally and 1 percent regularly.
Varying perceptions of Alzheimer's
Differing perceptions of Alzheimer's disease among racial and ethnic groups also pose roadblocks to quality care and support, according to the report. Nearly half (48 percent) of whites are concerned about developing Alzheimer's, compared to just 25 percent of Native Americans, 35 percent of Blacks, 41 percent of Hispanics and 46 percent of Asians.
The report suggests that personal experience may be influencing those varying levels of concern. Eighty percent of whites say they know someone with dementia compared to 65 percent of Blacks, 65 percent of Native Americans, 64 percent of Hispanics and 59 percent of Asians.
The report also found that a majority of Blacks, Hispanics, Asians and Native Americans view memory loss and cognitive decline as a natural part of aging rather than a sign of disease requiring medical attention. Whites were twice as likely as Hispanic, Black and Native Americans to say they would go to a doctor if they were experiencing such problems.
Although Blacks are disproportionately more likely to have Alzheimer's and other dementias, they are more reluctant than other Americans to participate in clinical research trials aimed at preventing or slowing the progression of the disease. Eighty-two percent of whites expressed interest in such trials compared to 67 percent of Blacks, 73 percent of Asians, 78 percent of Hispanics and 81 percent of Native Americans.
Blacks were twice as likely as other groups to say they “don't trust medical research” and more than twice as likely to say they “might not be treated fairly.” Nearly two-thirds (62 percent) believe that medical research is biased against people of color — a view shared by 45 percent of Asians, 40 percent of Native Americans, 36 percent of Hispanics and 31 percent of whites.
"We must continue to accelerate efforts to engage more people from underrepresented populations in Alzheimer's disease research and clinical trials,” Maria Carrillo, Ph.D., chief science officer of the Alzheimer's Association, said in a statement. “If trials do not include diverse participants, it is impossible to get a complete understanding of how racial and ethnic differences may affect the benefit and safety of potential treatments. Future clinical trial structures and recruitment efforts must lead to a better representation of the entire population, so everyone benefits from advances in Alzheimer's and dementia research."