Discrimination a Barrier to Alzheimer’s and Dementia Care, New Report Finds

Black and Hispanic Americans are at higher risk of dementia than white Americans, but many believe they have lower access to good medical care, a new survey shows.

Based on responses from representative mix of 2,491 U.S. adults age 18 and older, one survey found that more than a third of Black Americans (36 percent) believe discrimination would be a barrier to receiving Alzheimer’s care.

Reaching out to BIPOC communities is a priority of Alzheimer’s organizations.

Alamy

The Alzheimer's Association 2021 Alzheimer's Disease Facts and Figures report, released March 2, estimates that 6.2 million Americans ages 65 and older are living with Alzheimer’s disease — which means that more than 1 in 9 people ages 65 and older have the condition.

Deaths due to Alzheimer’s have more than doubled between 2000 and 2019, increasing 145 percent, according to the study. A total of 1 in 3 seniors dies with Alzheimer’s or another form of dementia.

Alzheimer’s Disproportionately Affects Black and Hispanic Communities

While all Americans face increasing dementia risk as they age, older Black and Hispanic Americans are disproportionately more likely than older white Americans to have Alzheimer’s or other dementias. The Alzheimer’s Association report, in a special section titled "Race, Ethnicity, and Alzheimer’s," cited data indicating that 18.6 of Black Americans and 14 percent of Hispanic Americans ages 65 and older have Alzheimer’s dementia, compared with 10 percent of white older adults.

Other studies indicate that older Black individuals are about twice as likely to have Alzheimer’s or other dementias as older white people, while some scientific investigations suggest that older Hispanic persons are about 1.5 times as likely to have Alzheimer’s or other dementias as older white people.

“These figures highlight how important it is that we address the issues that would help get care to these different groups,” says Stephanie Monroe, the executive director of African Americans Against Alzheimer's, an organization dedicated to addressing Alzheimer’s disease in the African American community through education, policy initiatives, and more.

“We know that Alzheimer's is going to double or quadruple in the next 20 to 30 years, and the Black and Latino populations are aging at higher rates. So I’m glad that we as a nation are beginning to have more conversations about this topic, but we certainly have a ways to go,” says Monroe.

Discrimination Seen as a Barrier to Dementia Care

The 2021 Alzheimer’s Disease Facts and Figures report included polling results revealing that discrimination is a significant issue among BIPOC (Black, Indigenous, and people of color) populations when it comes to getting medical attention for dementia.

Based on responses from a representative mix of 2,491 U.S. adults ages 18 and older, one survey found that more than one-third of Black Americans (36 percent) believe discrimination would be a barrier to receiving Alzheimer’s care. The same goes for nearly one-fifth of Hispanic Americans (18 percent) and one-fifth of Asian Americans (19 percent).

When asked more directly about the impact of race or ethnicity on the quality of care, more than two-thirds of Black Americans (66 percent) said they believe their own race or ethnicity makes it harder to get excellent care. About 40 percent of Native Americans, 39 percent of Hispanic Americans, and 34 percent of Asian Americans expressed similar views.

Caregivers Also Cite Discrimination in Navigating the Healthcare System

The report also included views on discrimination from the caregiver’s perspective. A separate survey of 1,392 caregivers found that half or more of nonwhite caregivers believed they faced discrimination when navigating healthcare settings for their care recipient who is living with dementia.

The caregivers said their top concern is dealing with providers or staff who do not listen to what they are saying because of their race, color, or ethnicity. This concern was especially high among Black caregivers (42 percent), followed by Native American (31 percent), Asian American (30 percent), and Hispanic (28 percent) caregivers. Fewer than 1 in 5 white caregivers (17 percent) expressed this view.

“First and foremost, these two new surveys from the Alzheimer’s Association find that discrimination is a significant barrier to Alzheimer’s and dementia care among Asian, Black, Hispanic, and Native Americans,” says Carl V. Hill, PhD, chief diversity, equity, and inclusion officer with the Alzheimer’s Association. “So this is really important that we understand this discrimination in our pursuit for health equity.”

Low Numbers of Black Americans in Clinical Research Trials

More detailed responses from survey participants highlighted specific gaps between the medical community and BIPOC individuals.

The report found that nearly two-thirds of Black Americans (62 percent) believe that medical research is biased against people of color — a view shared by substantial numbers of Asian Americans (45 percent), Native Americans (40 percent), and Hispanic Americans (36 percent).

Just over half of Black Americans (53 percent) trust that a future cure for Alzheimer’s will be shared equally, regardless of race, color, or ethnicity.

“When you’ve only got 2 percent of Blacks in a clinical trial, and they are 13 percent of the population, and about 20 percent of people with Alzheimer's, it’s not acceptable,” said Monroe.

The African Americans Against Alzheimer’s organization has been spearheading a nationwide effort to increase enrollment in clinical trials by meeting African Americans where they are — in churches, community centers, and through leading organizations — and providing them with the information they need to participate.

Alzheimer’s Association Works to Build Trust and Partnerships

Polling from the Alzheimer’s Association also revealed that fewer than half of Black (48 percent) and Native (47 percent) Americans feel confident that they have access to providers who understand their ethnic or racial background and experiences. Only about 3 in 5 Asian (63 percent) and Hispanic (59 percent) Americans likewise feel confident.

To build more trust between the medical establishment and BIPOC Americans, Dr. Hill says that the Alzheimer’s Association is making more efforts to reach out into communities.

“We have a partnership with the African Methodist Episcopal Church, and in partnering with Black churches around the country, we’re able to provide information to African Americans and communities about competent care that may exist in their communities and link them up with healthcare providers,” said Hill.

Hill noted that lack of diversity among healthcare professionals and mistrust in medical research has created significant barriers to care.

“Enhancing cultural competence and building trust are really important,” said Hill. “We have got to continue this process of building trust in the African American and other communities, and also prioritizing diversity in everything that we do.”

Bringing Healthcare to the Communities That Need It

Monroe also underscores how bringing healthcare directly into communities makes a difference. “People are working, and many times they are not working regular hours — they are working on the weekends or a night shift, and we need to get healthcare information to everyone,” she says.

To reach people, her organization is supporting community-based efforts to develop strategies that are effective at reaching people where they are. Example include using mobile vans and holding health fairs, where brain health and other assessments can be done for individuals in their neighborhoods.

“We’re also partnering with Black nurses and Hispanic nurses across the country to create good, culturally competent, easy-to-understand healthcare awareness information, clinical trial awareness, and risk assessments, and bring that into communities,” says Monroe.

Both the Alzheimer’s Association?and African Americans Against Alzheimer’s encourage people who are seeking more information about dementia care to reach out to their organizations.

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