Alzheimer’s Update

Arecently released special report from the Alzheimer’s Association—Race, Ethnicity and Alzheimer’s in America—examines the perspectives and experiences of Asian, Black, Hispanic, Native and white Americans in regard to Alzheimer’s and dementia care. The Alzheimer’s Association had commissioned Versta Research to conduct surveys of U.S. adults and of current/recent caregivers of adults age 50 or older with cognitive issues. Questions covered access to care and support services, trust in providers and the health care system, participation in clinical trials and research, and caregiver experiences. You can find the report at www.alz.org/media/ Documents/alzheimers-facts-and-figures-special-report.pdf.

• More than one-third of Black

Americans (36%), and nearly one-fifth of Hispanic (18%) and Asian Americans (19%), believe discrimination would be a barrier to receiving

Alzheimer’s care. • Two-thirds of Black

Americans (66%) believe it is harder for them to get excellent care for Alzheimer’s disease or other dementias.

Likewise, two in five

Native (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 (45%), Native (40%) and Hispanic Americans (36%) as well. Only about half of Black Americans (53%) trust that 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 that they have access to providers who understand their ethnic or racial background and experiences, and only about three in five Asian (63%) and Hispanic Americans (59%) likewise feel confident. • At least half of nonwhite caregivers say they have experienced discrimination when trying to navigate health care settings for their care recipient. “Despite ongoing efforts to address health and health care disparities in Alzheimer’s and dementia care, the survey results appear to show there is still a lot of work to be done,” says Carl V. Hill, chief diversity, equity and inclusion officer at the Alzheimer’s Association. “Clearly, discrimination, lack of diversity among health care professionals, and mistrust in medical research appear to create significant barriers to care and demand the country’s full attention.”

Hill notes that episodes of discrimination extend beyond dementia care. Many nonwhite Americans reported they have experienced discrimination in the broader health care system. Half of Black Americans (50%) say they’ve experienced discrimination when seeking health care; Native (42%), Asian (34%) and Hispanic Americans (33%) likewise report having experienced health care discrimination.

Discrimination also affected respondents’ views on clinical trials. One of the most common reasons cited for not participating in clinical trials among all racial/ ethnic groups was the desire not to be used as a “guinea pig.” In addition, almost half of Black Americans (45%) worried that the treatments might cause some sickness. Blacks were twice as likely as other racial groups to say they “don’t trust medical research” and more than twice as likely as other groups to say they “might not be treated fairly.”

Health and socioeconomic disparities and systemic racism seem to contribute to the increased Alzheimer’s and

dementia risk in communities of color. Older Blacks and Hispanics are disproportionately more likely to have Alzheimer’s and other dementias than older whites. Both groups are also more likely to have missed diagnoses.

Maria Carrillo, chief science officer at the Alzheimer’s Association, notes, “We must continue to accelerate efforts to engage more people from underrepresented populations in Alzheimer’s disease research and clinical trials. … 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.” Carrillo cited the need for clinical trials to comprise “better representation of the entire population, so everyone benefits from advances in Alzheimer’s and dementia research.”

The larger report that this special report is a part of—2021 Alzheimer’s Disease Facts and Figures—also examines the devastating impact the COVID-19 pandemic is having on people living with Alzheimer’s. There were at least 42,000 more deaths from Alzheimer’s and other dementias in 2020 compared with averages over the previous five years—a 16 percent increase.

The Alzheimer’s Association and various representatives from more than 25 countries have formed an international consortium to study the short- and long-term consequences of COVID-19 on the brain and nervous system of people at different ages and from different genetic backgrounds.

Many thanks for your continued support in the fight to stamp out Alzheimer’s disease and dementia-related conditions.

OLIVIA A. WILLIAMS IS CHAIR OF THE NARFE-ALZHEIMER’S NATIONAL COMMITTEE. EMAIL: OEASHF3@GMAIL.COM. THIS COLUMN APPEARS QUARTERLY.

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