Researchers estimate that there are more than 6.2 million people with Alzheimer’s disease currently living in the U.S. Of that number, more than two-thirds of infected individuals are female. Alzheimer’s also disproportionately impacts minorities, who face nearly twice the risk of developing the disease as white people.
If that weren’t bad enough, a new study has reported that individuals who develop Alzheimer’s often avoid or delay treatment out of fears over racism or discrimination from doctors and medical staff.
According to the study, “More than one-third of Black Americans (36%), and nearly one-fifth of Hispanic Americans (18%) and Asian Americans (19%), believes discrimination would be a barrier to receiving Alzheimer’s care. In addition, half or more of non-white caregivers say they have experienced discrimination when navigating health care settings for their care recipient.”
In fact, when polled, more than 20% of Black and Hispanic Americans have said they would feel “insulted” if a doctor suggested a cognitive assessment to test them for potential development of Alzheimer’s.
In an interview with Scripps National, Carl V. Hill, Chief Diversity, Equity and Inclusion Officer at the Alzheimer’s Association said “We were really shocked to see the influence of discrimination on the perception of discrimination and on people’s receipt of care.”
Hill added that “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.”
Among the other notable findings of the Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures report:
- “Two-thirds of Black Americans (66%) believe it is harder for them to get excellent care for Alzheimer’s disease or other dementias. Likewise, 2 in 5 Native Americans (40%) and Hispanic Americans (39%) believe their own race or ethnicity makes it harder to get care, as do one-third of Asian Americans (34%).”
- “Nearly two-thirds of Black Americans (62%) believe that medical research is biased against people of color — a view shared by substantial numbers of Asian Americans (45%), Native Americans (40%) and Hispanic Americans (36%) as well. Only half of Black Americans (53%) trust a future cure for Alzheimer’s will be shared equally regardless of race, color or ethnicity.”
- “Fewer than half of Black (48%) and Native Americans (47%) feel confident they have access to providers who understand their ethnic or racial background and experiences, and only about 3 in 5 Asian Americans (63%) and Hispanics (59%) likewise feel confident.”
“Despite ongoing efforts to address health and health care disparities in Alzheimer’s and dementia care, survey results show there is still a lot of work to be done,” Hill said. “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.”
In addition to ramping up efforts to improve cultural competence and diversity within Alzheimer’s treatment and increasing education and awareness within the elderly community, physicians and scientists studying Alzheimer’s and dementia within diverse populations also hope to bring a wider and more inclusive group of patients into ongoing research and treatments for the disease, believing it is an essential step in finding a cure for the illness.
“We must continue to accelerate efforts to engage more people from underrepresented populations in Alzheimer’s disease research and clinical trials,” said Maria Carrillo, Ph.D., chief science officer of the Alzheimer’s Association. “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.”
D.I. Fast Facts
Percentage of deaths due to Alzheimer’s between 2000 and 2019
1 in 9
Ratio of people over 65 who have some form of either Alzheimer’s or dementia
Hispanic, Black and Native Americans are twice as likely as white people to say they would not see a doctor if they experienced thinking, memory or cognitive problems.