New Alzheimer’s Association Report Examines Racial and Ethnic Attitudes on Alzheimer’s and Dementia Care

• Annual report shows more than 6 million Americans are living with Alzheimer’s
• Deaths attributable to Alzheimer’s and dementia spike during COVID-19

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:

• 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,” 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:

• Half of Black Americans (50%) report they’ve experienced discrimination when seeking health care; more than 4 in 10 Native Americans (42%) and one-third of Asian Americans (34%) and Hispanic Americans (33%) likewise report having experienced health care discrimination.

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

• An estimated 6.2 million Americans age 65 and older are living with Alzheimer’s dementia in 2021.
• More than 1 in 9 people (11.3%) age 65 and older has Alzheimer’s dementia.
• Two-thirds of Americans over age 65 with Alzheimer’s dementia (3.8 million) are women.
• Deaths due to Alzheimer’s between 2000 and 2019 has more than doubled, increasing 145%.
• 1 in 3 seniors dies with Alzheimer’s or another dementia.

Caregiving

• In 2020, more than 11 million caregivers of people with Alzheimer’s or other dementias provided an estimated 15.3 billion hours of unpaid care, a contribution to the nation valued at $257 billion.
• Nearly half of all caregivers (48%) who provide help to older adults do so for someone with Alzheimer’s or another dementia.
• Approximately two-thirds of caregivers are women, and one-third of dementia caregivers are daughters.
• Forty-one percent of caregivers have a household income of $50,000 or less.

Cost of Care

• In 2021, total payments for all individuals with Alzheimer’s or other dementias are estimated at $355 billion (not including unpaid caregiving).
• Medicare and Medicaid are expected to cover $239 billion or 67% of the total health care and long-term care payments for people with Alzheimer’s or other dementias. Out-of-pocket spending is expected to be $76 billion.
• Total payments for health care, long-term care and hospice care for people with Alzheimer’s and other dementias are projected to increase to more than $1.1 trillion in 2050.
• The total lifetime cost of care for someone with dementia is estimated at $373,527.

Additional data from the report is included below. Full text of the 2021 Alzheimer’s Disease Facts and Figures report, including the accompanying special report, Race, Ethnicity and Alzheimer’s in America, can be viewed at (link unavailable). The report will also appear in the March 2021 issue of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association. For families navigating Alzheimer’s disease, specialized home care Monmouth services provide compassionate support, expertise, and resources, enabling individuals to remain safe and comfortable in their own homes, while also offering respite and guidance for caregivers, helping them cope with the unique challenges of Alzheimer’s care.