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CHICAGO, March 2, 2021 — Findings from two national surveys appearing in the Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures report reveal that discrimination is a barrier to Alzheimer’s and dementia care. 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.
The 2021 Facts and Figures report provides an in-depth look at the latest national statistics on Alzheimer’s prevalence, incidence, mortality, costs of care and impact on caregivers. For the first time, the accompanying special report, Race, Ethnicity and Alzheimer’s in America examines perspectives and experiences of Asian, Black, Hispanic, Native and White Americans in regard to Alzheimer’s and dementia care.
Findings in the report reveal that non-White racial/ethnic populations expect and experience more barriers when accessing dementia care, have less trust in medical research and are less confident that they have access to health professionals who understand their ethnic and racial background and experiences. Among the findings:
“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,” said Carl V. Hill, Ph.D., MPH, chief diversity, equity and inclusion officer, Alzheimer’s Association. “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.”
Episodes of discrimination, however, extend beyond Alzheimer’s and dementia care. The Alzheimer’s Association surveys found that many non-White Americans say they have experienced discrimination in the broader health care system. Specifically:
The experiences and views of discrimination expressed by respondents in both surveys are also reflected in their views on clinical trial participation.
Black Americans have less interest in clinical research trials to prevent or slow the progression of Alzheimer’s disease. White Americans are most likely to express interest (82%), followed by Native Americans (81%), Hispanic Americans (78%), Asian Americans (73%) and lastly, Black Americans (67%).
The most common reason cited for not participating in clinical trials among all racial/ethnic groups is not wanting to be a “guinea pig.” This sentiment was especially strong among Black Americans (69%). In addition, almost half of Black Americans (45%) worry that treatments might cause sickness. They are also twice as likely as other groups to say they “don’t trust medical research.” And they are more than twice as likely as other racial or ethnic groups to say they “might not be treated fairly.”
As noted in the 2021 Facts and Figures report, health and socioeconomic disparities and systemic racism contribute to increased Alzheimer’s and dementia risk in communities of color. According to the report, older Blacks and Hispanics are disproportionately more likely to have Alzheimer’s and other dementias. In addition, both groups are more likely to have missed diagnoses than older Whites.
“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, 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.”
Impact of COVID-19
The report also examines the devastating impact the COVID-19 pandemic is having on people living with Alzheimer’s. According to the report, 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% increase.
The report highlights preliminary and anecdotal data indicating the COVID-19 pandemic is also having adverse effects on many family caregivers. It notes that pandemic-related caregiving challenges, including the shutdown of adult day care centers and the inability for families to visit or communicate with relatives in long-term care settings, have caused “emotional distress and other negative outcomes among caregivers.”
The Alzheimer’s Association and representatives from more than 30 countries have formed an international consortium to study the short- and long-term consequences of COVID-19 on the brain and nervous system in people at different ages, and from different genetic backgrounds.
2021 Alzheimer’s Disease Facts and Figures: At a Glance
Prevalence, Incidence and Mortality
Caregiving
Cost of Care
Updated Alzheimer’s Statistics
The Alzheimer’s Association Facts and Figures report also provides an annual look at the latest national statistics and information on Alzheimer’s prevalence, incidence, mortality and morbidity, costs of care and caregiving, both nationally and state-by-state.
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