New findings show that not only does dementia disproportionately affect communities of color: racial discrimination impacts the care experience. Two advocates share how they are demystifying these inequities in hopes of decreasing the unequal burden Alzheimer’s has on people of color.
According to two national surveys within the Alzheimer’s Association’s 2021 special report ‘Race, Ethnicity and Alzheimer’s in America,’ half of Black Americans, 42 percent of Native Americans, and around one third of Asian Americans and Latinx Americans reported experiencing discrimination while seeking healthcare.
The discrimination did not stop with those experiencing the disease, but also extended to caregivers when seeking help for their care recipient. Over half of Native American (63 percent), Black (61 percent) and Latinx (56 percent) caregivers described racial prejudice when overseeing and navigating health care settings. Just under half of Asian Americans caregivers (47 percent) shared the same experience.
According to the report, specific barriers include healthcare providers or staff members not listening to them because of their race, color or ethnicity. A quarter of non-white caregivers described health care professionals dealing with them as if they were “not smart.”
With Black Americans’ unfavorable odds of getting the disease – they are about twice as likely to face an Alzheimer’s or dementia diagnosis than their white counterparts – the stakes are high.
Experts estimate that by 2030, nearly 40 percent of the eight million Americans contending with Alzheimer’s or a related dementia will be Latinx or Black. Worryingly, this is considered a conservative figure, because the proportion of undiagnosed and untreated dementia runs high within these communities.
“We were really shocked to see the influence of discrimination on the perception of discrimination and on people’s receipt of care,” said Alzheimer’s Association Chief of Diversity, Equity and Inclusion Officer Carl V. Hill in an interview with Scripps National. “As people feel like they will be treated unfairly in a health care setting, they’re less likely to go and seek care … we know that delayed diagnosis or misdiagnosis is a huge factor for the disparities that we see.”
Black and Latinx communities have a higher risk of developing dementia, cardiovascular disease and diabetes than their white counterparts – all of which are known risk factors to the disease, the report explained.
According to the report, specific barriers include
healthcare providers or staff members not listening
to them because of their race, color or ethnicity.
A quarter of non-white caregivers described
healthcare professionals dealing with
them as if they were “not smart.”
Socioeconomic disparities, including education, income and occupation, all seem to play a role as well: Communities of color generally experience lower-quality or lack of access to education, higher poverty rates and greater exposure to adversity and discrimination, the Alzheimer’s Association reported. Because of these factors, experts say these underserved communities are fighting a losing battle when it comes to bolstering their brain health through proven measures like maintaining a healthy diet and exercise.
The Need for Health Equity and Racial Justice
Jason Resendez, executive director of the UsAgainstAlzheimer’s Center for Brain Health Equity, has a goal of putting a spotlight on the dire consequences of this inequity.
In the past ten years since its founding, UsAgainstAlzheimer’s has been advocating for the need for health equity and racial justice. Their 2020 report in collaboration with the Urban Institute, unearthed the profound social, geographic and health inequities that exist between counties where people of color have the highest rates of Alzheimer’s and related dementias and counties where those rates are the lowest.
“We see across all racial and ethnic groups that counties with the lowest prevalence [of dementia] tend to have a much higher level of education than the counties with highest prevalence,” Stipica Mudrazija, senior research associate at the Urban Institute, said during a virtual conference. “With the difference being somewhat higher for Latinos and non-Latino Blacks than non-Latino whites.”
Resendez echoed this statement, revealing the correlation between counties most impacted by Alzheimer’s disease and the deep social inequities that plague them.
This in turn, he said, “demonstrates the impact of place in determining our conditions and ability to live a healthy lifestyle.” Resendez noted that the potential for Alzheimer’s risk-reduction opportunities within these communities are vast, so long as these social determinants of health are addressed equitably and urgently.
The Center for Brain Health Equity is collaborating with nursing professionals and community-based organizations to create culturally resonant public health strategies and messaging for communities of color, while improving data collection and diversifying the research pipeline.
“We are communicating the idea that there’s a lot of promise happening in laboratories, and high-income communities, related to risk reduction for dementia,” Resendez explained. “That hope and research is not making it into the hands of minority serving providers and minority identified providers. So, our second goal of the Center is to develop engagement strategies and messages to help build bridges between exciting research and individuals who can put that research into use.”
They are executing change through three main strategies: engaging, educating and empowering nurses – a community Resendez said are a critical workforce because they usually reside in the communities they’re serving, which gives them the opportunity to connect with marginalized people of color – developing public health strategies to promote brain health in Latinx and Black American communities and leveraging community level data to inform how to best develop and target outreach.
“We know the social determinants of health can act as barriers to healthcare access and treatment,” Resendez said. “That’s why documenting trends in the social determinants in these highly impacted counties is important as health systems and governments develop programs to support communities that are hard hit by Alzheimer’s.”
Maria Carrillo, chief science officer at the Alzheimer’s Association, urged researchers to accelerate their efforts in including and engaging marginalized communities in their research and clinical trials.
“We must continue to accelerate efforts to engage more people from underrepresented populations in Alzheimer’s disease research and clinical trials,” she said in a news release. “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.”