Those at Highest Risk See Barriers to Care: COVID Impact Continues on Those Living with Alzheimer's

Those Americans at highest risk for Alzheimer’s disease – people of color including Native Americans, Hispanics and Blacks – have the greatest concerns about receiving appropriate dementia care, according to two national surveys featured in the Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures report.

Over forty percent of Native Americans and half of Black Americans report having experienced health care discrimination, according to the surveys. One-third of Asian Americans (34%) and Hispanic Americans (33%) likewise report having experienced discrimination when seeking health care related to dementia.

Additionally, a large number of non-White caregivers for loved ones living with Alzheimer’s reported facing discrimination when navigating health care settings, with the top concern being that health care providers or staff members do not listen to what they’re saying because of their race, color or ethnicity. The concern was especially high among Black caregivers (42%), followed by Native American (31%), Asian American (30%) and Hispanic (28%) caregivers. Only 17% of White caregivers expressed this concern.

“Data already show that people of color are at significantly greater risk for developing Alzheimer’s disease and other dementias,” said Lynn Mullowney Cabrera, executive director of the Alzheimer’s Association of Montana. “If these same people face obstacles in getting a diagnosis or proper care, it compounds the tragedy for these families.”

Black Americans are twice as likely as their White counterparts to develop Alzheimer’s disease, while Hispanic Americans are 50% more likely than Whites. Both Blacks and Hispanics have a greater risk of developing hypertension and diabetes, known risk factors for Alzheimer’s and other dementias.

Ongoing COVID-19 impact

The estimated 6.2 million Americans now living with Alzheimer’s disease continue to face increased health risks related to COVID-19. According to the report, there were at least 42,000 more deaths from Alzheimer’s and other dementias across the United States in 2020 compared with averages over the previous five years – a 16% increase. These are not deaths attributed to COVID-19, but to associated factors.

In Montana, there were 168 more deaths from Alzheimer’s and dementia in 2020 than compared to averages over the past five years – a 17.8% increase.

“Beyond the direct health implications of COVID-19, people living with Alzheimer’s are at greater risk because of the disruption in their routines, the social isolation from family and friends, the requirement to wear masks and wash hands, and so much more,” said Cabrera. “These increased deaths are a clear sign that the disruption in lifestyle, increased isolation and related confusion are shortening the lives of many of our older adults living with dementia. And compromising the health and well-being of their family caregivers.”

“Race, Ethnicity and Alzheimer’s in America”

For the first time, the annual Alzheimer’s Association Facts and Figures report included a special report, “Race, Ethnicity and Alzheimer’s in America,” which examines perspectives and experiences of Asian, Black, Hispanic, Native and White Americans in regard to Alzheimer’s and dementia care.

• Nearly two-thirds of Black Americans (62%) surveyed 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%). Only 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 they have access to providers who understand their ethnic or racial background and experiences, and only about three in five 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., Alzheimer’s Association chief diversity, equity and inclusion officer. “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.”

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.”

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. New disease-related statistics for Montana revealed the following:

• Number of Montana residents aged 65 and older living with Alzheimer’s: 22,000

• Estimated number of Montana residents living with Alzheimer’s in 2025: 27,000

• Statewide deaths from Alzheimer’s disease (2019): 326

Death certificates often list acute conditions such as pneumonia as the primary cause of death. As a result, people with Alzheimer’s or other dementias who die due to these acute conditions may not be counted in this number although Alzheimer’s may have been the causative factor.

• Number of Montana residents serving as unpaid family caregivers: 16,000

• Total hours of unpaid care provided in 2020: 24 million

• The number of hours per caregiver in Montana is higher than the national average (28.9 hours per caregiver vs. 26.3 nationally). Family / friend caregivers in Montana provide 135 more hours of care (more than 3 full work weeks) per year than the national average.

• Total value of unpaid care: $425 million

National Alzheimer’s disease 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.

• The average unpaid caregiver provides 26.3 hours of care per week – 1,369 hours per year. As noted above, Montana caregivers devote an average of 28.9 hours of care weekly.

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 annual 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 by 2050.

• The total lifetime cost of care for someone with dementia is estimated at $373,527.

Other Key Findings from “Race, Ethnicity and Alzheimer’s in America”

• Concern about developing Alzheimer’s is lower among Native Americans (25%), Blacks (35%) and Hispanics (41%), especially when compared with Whites (48%).

• More than one-third of Native Americans (35%) and nearly three in 10 Hispanics (28%) do not believe they will live long enough to develop Alzheimer’s or another dementia.

• More than half of non-White Americans believe significant loss of memory or cognitive abilities is “a normal part of aging.”

• Hispanic, Black and Native Americans are twice as likely as Whites to say they would not see a doctor if experiencing thinking or memory problems.

• One in five Black (21%) and Hispanic Americans (20%) say they would feel insulted if a doctor suggested a cognitive assessment.

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 alz.org/facts.