Special Report

70 Alzheimer’s Association. 2021 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2021;17(3).

Race, Ethnicity and

Alzheimer's in America

Special Report

Despite decades of research and calls to

action to ensure that health care is accessible

and equal for all regardless of gender, race,

ethnicity, geography and socioeconomic

status, this aim is still far from reality for too

many Americans.

Disparities Still Impacting Health and

Health Care

Reducing or eliminating disparity has been part of the

national conversation as a key goal of the U.S. Department

of Health and Human Services’ Healthy People initiative for

more than 20 years.

663-664

Yet disparity is still evident in

health and health care.

While health disparities and health care disparities are often

used interchangeably, there are important distinctions

between the two terms. A health disparity exists when

there is a higher burden of illness, injury, disability or

mortality in one group relative to another, whereas a health

care disparity is used to describe differences between

groups in health insurance coverage, access to and use of

health care, and quality of health care.

665

The existence and adverse effects of health disparities

are well documented. For example, Blacks and Native

Americans are more likely than Whites to report a range

of health conditions, including asthma and diabetes. Native

Americans also have higher rates of heart disease

compared with Whites.

666

The existence of health care disparities is similarly well

documented. Non-White racial/ethnic populations and

low-income individuals have historically faced greater

barriers to accessing care. One reason for this is that they

are more likely to be uninsured than Whites and people

with higher incomes.

667

Health and health care disparities are intertwined with

social, economic and environmental factors that perpetuate

disadvantage. Both health and health care disparities are

influenced by socioeconomic status, age, geographic

location, gender, disability status and sexual orientation.

665

Race and ethnicity are also important factors contributing

to health and health care disparities.

665

Health care system factors that contribute to disparity

should also be acknowledged. These include implicit

bias on the part of health care providers, as well as cultural

and language barriers that impede patient-provider

relationships.

665

Understanding how different racial and ethnic groups view,

access and experience health care is critical to informing

improvements to the health care system and helping health

providers care for an increasingly diverse population. The

need to do so is urgent. It is projected that people of color

will account for over half (52%) of the population in 2050.

665

Pandemic Sparks New Discussions

About Disparities

In 2020, the COVID-19 pandemic and social justice

movements sparked new conversations about endemic and

long-standing health and health care disparities faced by

non-White racial/ethnic populations, especially when it

comes to access, discrimination and trust in the health care

system.

668-669

These populations were disproportionately

affected by the environmental, societal and economic

impact of the pandemic — facing greater risk of losing

a job or income, being more likely to be frontline workers

with greater risk of exposure to the SARS-CoV-2 virus that

causes COVID-19, and having a higher likelihood of housing

uncertainty and food insecurity due to the pandemic.

670-674

The effects of these social, economic and environmental

factors, known as social determinants of health, can put a

population’s current and future health in jeopardy. For

example, they have created stark contrasts in COVID-19

infection rates and outcomes. Black, Native American and

Hispanic communities have seen COVID-19 cases,

hospitalizations and deaths at rates greater than Whites,

and these events far exceed their share of the U.S.

population.

675-678

Special Report — Race, Ethnicity and Alzheimer's in America

Health Disparity vs. Health Care Disparity

665

Health disparity: a higher burden of illness,

injury, disability or mortality experienced by

one group relative to another.

Health care disparity: differences between

groups in health insurance coverage, access

to and use of care, and quality of care.

Both: differences that are not explained by

variations in health needs, patient preferences

or treatment recommendations and are

closely linked with social, economic and/or

environmental disadvantage.

72 Alzheimer’s Association. 2021 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2021;17(3).

In seeking care for COVID-19, Black Americans nationwide

report on social media and in news stories that they

experienced bias and discrimination.

679-680

One study found

that Hispanics were prevented from accessing testing and

care for COVID-19 because they lacked insurance and

there were shortages of interpreters in local health

systems.

681

Language barriers and low health literacy also

contributed to misunderstanding of COVID-19 –related

health information and the spread of misinformation in

some Hispanic communities.

681

A separate survey found

that Asian and White individuals were more knowledgeable

about COVID-19 than Hispanic and non-Hispanic Black

individuals; this difference in awareness and understanding

could exacerbate existing disparities in health care.

682

Racial and Ethnic Disparities Exist in

Alzheimer’s and Dementia Care

Racial and ethnic disparities in health and health care,

such as those observed during the pandemic, extend to

dementia care. Stigma, cultural differences, awareness and

understanding, and the ability to obtain a diagnosis, manage

the disease, and access care and support services for

dementia vary widely depending on race, ethnicity,

geography and socioeconomic status. These disparities

reach beyond clinical care to include uneven representation

of Black, Hispanic, Asian and Native Americans in

Alzheimer’s research in clinical trials.

As discussed in the Prevalence section (see page 18),

health and socioeconomic disparities and systemic

racism contribute to increased Alzheimer’s and

dementia risk in underrepresented racial and ethnic

groups.

85,140,217,284,287-289,292-293

Older Black and Hispanic

Americans are also disproportionately more likely to

have Alzheimer’s and other dementias, as well as more

likely to have missed diagnoses, than older White

Americans.

271-277,294-296

Caregiving for individuals with Alzheimer’s or other

dementias differs between racial and ethnic groups too.

These differences include the availability of support

services, the time spent on caregiving, cultural perceptions

of the burden of caregiving, whether social networks

provide support, and the psychological well-being of the

caregiver.

384-388, 390

The State of Disparity in Alzheimer’s

and Dementia Health Care: Adult and

Caregiver Surveys

To better understand racial and ethnic attitudes and

experiences regarding Alzheimer’s and dementia care

in the United States, the Alzheimer’s Association

commissioned Versta Research to conduct surveys of

(1) U.S. adults and (2) current or recent caregivers of adults

age 50 or older with cognitive issues. Respondents were

asked about access to care and support services, trust in

providers and the health care system, participation in

clinical trials and research, and caregiver experiences.

This is the first Alzheimer’s Association survey to ask

and report the views of Asian Americans and Native

Americans on these issues. It is also one of the few reports

to investigate the experiences of diverse caregivers.

387

Key Findings

The Alzheimer’s Association surveys revealed:

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%), believe discrimination would be a

barrier to receiving Alzheimer’s care.

• Half of Black Americans (50%) report they have

experienced health care discrimination; more than

2 in 5 Native Americans (42%) and one-third of Asian

Americans (34%) and Hispanic Americans (33%) likewise

report having experienced discrimination when

seeking health care.

• Among non-White caregivers, half or more say they

have faced discrimination when navigating health care

settings for their care recipient, with the top concern

being that providers or staff do not listen to what they

are saying because of their race, color or ethnicity.

This concern was especially high among Black

caregivers (42%), followed by Native American (31%),

Asian American (30%) and Hispanic (28%) caregivers.

Fewer than 1 in 5 White caregivers (17%) expressed

this view.

• Two in 5 caregivers (41%) who provide unpaid care to a

Black person say that race makes it harder for them to

get excellent health care. Nearly 1 in 3 caregivers of

Hispanic people (32%) say the same.

People of color want health care providers who

understand their unique experiences and backgrounds,

but many doubt they would have access to culturally

competent providers.

• An overwhelming majority of non-White Americans

say it is important for Alzheimer’s and dementia care

providers to understand their ethnic or racial

background and experiences, including Native

Americans (92%), Blacks (89%), Hispanics (85%) and

Asian Americans (84%).

• But fewer than half of Black (48%) and Native

Americans (47%) feel confident there is access to

providers who are culturally competent, and only about

3 in 5 Asian Americans (63%) and Hispanics (59%)

likewise feel confident.

Black Americans lack trust in research clinical trials,

and half doubt that advances in Alzheimer’s treatments

will be shared.

• Nearly two-thirds of Black Americans (62%) believe

medical research is biased against people of color, and

Black Americans are less interested in participating in

clinical trials for Alzheimer’s than all other groups

surveyed.

• Only half of Black Americans (53%) trust a future cure

for Alzheimer’s will be shared equally regardless of race,

color or ethnicity.

Knowledge, concern and stigma about Alzheimer’s varies

widely across racial and ethnic groups.

• 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 3 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 5 Black (21%) and Hispanic Americans (20%)

say they would feel insulted if a doctor suggested a

cognitive assessment.

• Hispanic and Black Americans worry less than other

groups about being a burden on family if they develop

Alzheimer’s disease.

• Nearly 2 in 3 caregivers (64%) across all groups say that

caregiving is stressful, but nearly all (92%) say caregiving

is rewarding as well.

Overall, the results of the Alzheimer’s Association surveys

indicate that despite ongoing efforts to address health

and health care disparities in Alzheimer’s and other

dementias, there is still much work to do. Non-White

racial/ethnic populations face more challenges in accessing

and receiving high quality dementia care and support

services in the current environment. The data suggest that

discrimination and lack of diversity in the health care

profession are significant barriers that demand attention.

Survey Design and Research Methods

Surveys across both groups explored wide-ranging issues

related to Alzheimer’s and dementia care, including:

• Knowledge and understanding of the disease.

• Access to care and support services.

• Trust in health care, providers and disease research.

• Interest in clinical trials.

• Existence of discrimination and how that impacts care.

Survey of U.S. Adults

A survey of 2,491 U.S. adults age 18 and older was

conducted from October 26, 2020, to November 11,

2020. Data was collected by NORC at the University of

Chicago via the AmeriSpeak® panel. AmeriSpeak is a

probability-based panel of all U.S. households. The survey

included 945 White respondents. Oversamples of Hispanic

(n=541), Black (n=515) and Asian Americans (n=412) were

weighted back to their true population proportions for

statistical analysis and reporting. For full inclusion of Native

Americans, the same survey was administered to an

additional sample of 406 Native Americans recruited

through online (non-probability) panels with sampling

stratified and data weighted on gender, age, income and

education to match U.S. Census Bureau data. The survey

was offered in both English and Spanish.

Survey of Caregivers

A survey of 1,392 U.S. adults who were current or recent

unpaid caregivers for an adult relative or friend age 50 or

older experiencing problems with thinking, understanding

or remembering things was conducted from October 21,

2020, through November 22, 2020. The sample included

White (n=313), Hispanic (n=309), Black (n=305), Asian

(n=301) and Native American caregivers (n=154), and

caregivers who identified as belonging to another ethnic

or racial group (n=10). Respondents were recruited via

non-probability online panels used exclusively for research,

with full population screening and respondent data

weighted to match U.S. Census data on age, gender,

income, education and race/ethnicity to ensure accurate

representation of the caregiving population, and to correct

for demographic oversamples. The survey was offered in

both English and Spanish.

For both surveys, differences noted in the report

between racial and ethnic groups were tested and found

to be statistically significant at the p<.05 level.

Special Report — Race, Ethnicity and Alzheimer's in America

74 Alzheimer’s Association. 2021 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2021;17(3).

Survey Results

Discrimination Continues to be a Barrier to

Dementia Care

The Alzheimer’s Association survey of U.S. adults found

that more than one-third of Black Americans (36%) and

one-fifth of Hispanic (18%) and Asian (19%) Americans see

discrimination as a barrier to receiving Alzheimer’s and

dementia care (Table 20). Specifically, they expect to be

treated differently because of their race, color or ethnicity.

Other perceived barriers to care cited by survey

respondents include affordability (especially among Asian

Americans), followed by lack of good health insurance

coverage, lack of good local health care (especially among

Black Americans and Asian Americans), and lack of family

and social support. Fewer respondents saw language

as a barrier to receiving dementia care, but among current

caregivers, almost 1 in 4 Asian Americans (23%) and

nearly 1 in 5 Hispanic caregivers (17%) cited language as

a barrier to care.

When asked more directly about the impact of race or

ethnicity on the quality of care, two-thirds of Black

Americans (66%) believe it is harder for Black Americans 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%).

Caregivers, too, see discrimination as a top barrier, with

1 in 4 Black caregivers (25%) citing discrimination as a

barrier, followed by Native American (19%), Asian American

(17%) and Hispanic (8%) caregivers. In fact, more than half

of Native American (63%), Black (61%) and Hispanic (56%)

TABLE 20

White

Americans

Hispanic

Americans

Black

Americans

Asian

Americans

Native

Americans

Aﬀordability of care 61% 55% 52% 70% 61%

Lack of good health care insurance coverage 31% 41% 31% 39% 36%

Lack of good health care services in my community 20% 24% 27% 27% 24%

Lack of family and social support to help me 20% 21% 20% 25% 20%

Being treated diﬀerently because of my race, color or ethnicity 1% 18% 36% 19% 12%

Not being able to communicate easily in English 4% 9% 9% 8% 5%

Other barriers 2% 1% 1% 1% 2%

There would be no barriers 21% 17% 20% 12% 14%

Perceived Barriers to Getting Excellent Health Care and Support for Alzheimer’s or Another Dementia Among U.S. Adults

TABLE 21

White

Americans

Hispanic

Americans

Black

Americans

Asian

Americans

Native

Americans

Felt not listened to 17% 28% 42% 30% 31%

Provider acted like you were not smart 11% 26% 28% 28% 43%

Treated with less courtesy than others 11% 26% 26% 23% 22%

Treated with less respect than others 8% 24% 26% 20% 27%

Received poorer service than others 7% 21% 19% 10% 18%

Provider acted afraid of you 7% 11% 13% 7% 4%

Types of Discrimination Based on Race, Color or Ethnicity Among Alzheimer’s and Dementia Caregivers

caregivers report having experienced racial discrimination

when navigating health care settings for their care recipient.

The same is true for nearly half of those who are Asian

American (47%). Two in 5 caregivers (41%) who provide

unpaid care to a Black person say that race makes it harder

for them to get excellent health care. Nearly 1 in 3

caregivers of Hispanic people (32%) say the same.

What specifically have caregivers experienced? The top

problem cited was that providers or staff do not listen to

them because of their race, color or ethnicity (Table 21).

This was especially high among Black caregivers (42%),

followed by Native American (31%), Asian American (30%)

and Hispanic (28%) caregivers. Fewer than 1 in 5 White

caregivers (17%) expressed this same view. More than

1 in 4 non-White caregivers report health care providers

treating them as if they were “not smart” (Native American,

43%; Asian American, 28%; Black, 28%; and Hispanic, 26%)

compared with about 1 in 10 White (11%) caregivers.

In addition, at least one-fifth of non-White caregivers

report being treated with less courtesy and/or less respect.

Not surprisingly, the belief among non-White Americans

(not just caregivers) that discrimination is a barrier to

Alzheimer’s and dementia care is rooted in their own

experiences with the health care system. Half of Black

Americans (50%), more than 2 in 5 Native Americans (42%)

and a third of all Asian (34%) and Hispanic (33%) Americans

report having experienced discrimination when seeking

health care (see Figure 18, page 76). In contrast, fewer than

1 in 10 White Americans (9%) report having experienced

discrimination because of their race, color or ethnicity.

Desire for Providers Who Understand Ethnic or

Racial Background

Given their own experiences with discrimination, it is

not surprising that non-White racial/ethnic populations

feel it is important for Alzheimer’s and dementia care

providers to be more culturally competent. Responses

from both surveys indicate a strong desire for dementia care

providers who understand different racial and ethnic

backgrounds, but many survey respondents say access

to these providers is lacking.

Figure 19 (see page 77) shows responses to two questions

that were tailored to a respondent’s race or ethnicity. For

example, Black respondents were asked: “How important

do you feel it is for Black people with Alzheimer’s or other

dementias to have health care providers who understand

their background and experiences as Black people?”

And then: “How confident are you that Black people with

Alzheimer’s or other dementias have access to health

care providers who understand their background and

experiences as Black people?”

An overwhelming majority of non-White respondents

said it was important for Alzheimer’s and dementia care

providers to understand their ethnic or racial background

and experiences, including Native Americans (92%), Black

Americans (89%), Hispanic Americans (85%) and Asian

Americans (84%). However, fewer than half of Black

respondents (48%) and Native American respondents (47%)

felt confident that people in their communities with

Alzheimer’s or other dementias currently have access

to such providers, and fewer than two-thirds of Asian

Americans (63%) and Hispanic Americans (59%) felt

the same.

The survey of caregivers mirrored these results. Among

those caring for a non-White person, most felt it was

important for health care providers to understand the

ethnic or racial background and experiences of the

person they are caring for, including 96% of those caring

for Native Americans, 94% of those caring for Asian

Americans, 91% of those caring for Black Americans

and 89% of those caring for Hispanic Americans.

Far fewer caregivers rated their current health care

providers as being “excellent” or “good” when it comes

to understanding the ethnic or racial background and

experiences of the person they are caring for (Native

Americans, 67%; Hispanic Americans, 65%; Black Americans,

61%; and Asian Americans, 53%).

Belief That Research Is Biased Is More Common

Among Non-Whites; Blacks Do Not Believe a Cure

Will Be Shared Equally

The experiences and views of discrimination expressed

by respondents in both surveys are reflected in their views

on clinical trials, research and potential treatment for

Alzheimer’s and other dementias.

A majority 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.

Notably, even a third of White Americans (31%) see

medical research as being biased against people of color

(see Figure 20, page 78).

It’s not surprising, then, that among Americans as

a whole, Blacks 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%).

Special Report — Race, Ethnicity and Alzheimer's in America

76 Alzheimer’s Association. 2021 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2021;17(3).

Regularly From time to time

White Americans Hispanic Americans Black Americans Asian Americans Native Americans

Percentage of U.S. Adults Who Have Experienced Racial or Ethnic Discrimination When Seeking Health Care

FIGURE 18

27%

41%

31%

33%

Percentage

Responses from caregivers present a somewhat different

picture. Compared with other groups, Black caregivers

and Hispanic caregivers are somewhat more interested in

clinical trials for their care recipient (Black caregivers, 73%;

Hispanic caregivers, 70%), while Asian American caregivers

are least interested in having their care recipient be

involved in clinical research (57%). Overall, interest in

clinical trial participation was higher in both Alzheimer’s

Association surveys than is reflected in current trial

participation, particularly for non-White racial/ethnic

populations.

683

Follow-up research is needed to better

understand mitigating factors that may prevent interested

individuals from actual trial participation.

Among U.S. adults who are not interested in clinical

trial participation, the most common reason cited

regardless of race or ethnic group is not wanting to be a

“guinea pig” (see Table 22, page 79). This sentiment is

especially strong among Black Americans (69%), for whom

other differences stand out as well. For example, almost

half of Black Americans (45%) worry that treatments might

cause sickness. They are twice as likely as other groups to

say they “don’t trust medical research.” And they are more

than twice as likely than other racial or ethnic groups to say

they “might not be treated fairly.”

A noteworthy difference for Asian Americans is that the

potential time and cost of clinical trials ranks second among

their reasons for not wanting to participate; this reason

was cited by 43% of respondents.

For caregivers, reasons for lack of interest were more

varied. Black caregivers were most focused on lack of

perceived benefit (35%) and not wanting the person to

be a guinea pig (32%). Hispanic caregivers were most

focused on not wanting a placebo treatment (28%). Asian

American caregivers were twice as likely as others to say

the person might not be treated fairly (20%). Native

American caregivers were more focused on not wanting

the person to be a guinea pig (40%) and potential lack

of support among family and community (39%).

The impact of discrimination and bias is also apparent in

respondents’ views on treatment access. Should clinical

trials identify a treatment or “cure” for Alzheimer’s disease,

only half of Black Americans (53%) trust that this cure will

be shared equally regardless of race, color or ethnicity

(see Figure 21, page 78). This is in sharp contrast to White

Americans (75% of whom believe it will be shared) and

lower than other racial and ethnic groups as well, including

Asian Americans (69%), Hispanic Americans (66%) and

Native Americans (65%).

While the majority of both White and non-White

Americans trust health care providers generally, trust is

somewhat weaker among Hispanic, Black and Native

Americans. Asian Americans are most likely to say

100

Important for Alzheimer's or dementia health care providers to

understand a (race/ethnicity) person's ethnic or racial background

Conﬁdent that (race/ethnicity) patients currently have access to

providers who understand their ethnic or racial background

Hispanic Americans

85%

59%

Black Americans

89%

48%

Asian Americans

84%

63%

Native Americans

92%

47%

Access to Health Care Providers Who Understand Racial and Ethnic Backgrounds Among U.S. Adults

FIGURE 19

Percentage

they trust health care providers (93%), followed by

White Americans (88%), with lower numbers for Black

Americans (82%), Hispanic Americans (81%) and Native

Americans (79%).

Perhaps related to this, Hispanic, Black and Native

Americans are twice as likely as White Americans to say

they would not see a doctor if they were experiencing

thinking or memory problems. Almost 1 in 10 Hispanics

(9%), Blacks (8%) and Native Americans (9%) say they would

not see a health care provider, versus 1 in 25 White

Americans (4%). Six percent of Asian Americans say they

would not see a health care provider.

One in 5 Black Americans (21%) and Hispanic Americans

(20%) say they would feel insulted if a doctor suggested an

assessment for their thinking or memory, versus half as

many White Americans who would feel insulted (10%).

About 1 in 6 Asian Americans (16%) would feel insulted, as

would 1 in 7 Native Americans (14%).

Hispanics are also least confident they would be able to

access quality health care for Alzheimer’s disease or other

dementias if they needed it, especially compared with

White Americans. In particular, fewer Hispanic Americans

express confidence in being able to get excellent health

care for specialist testing and diagnosis (69% versus 79% of

White Americans) and health care and support to manage

the disease (67% versus 74% of White Americans).

Knowledge and Understanding of Alzheimer’s

Disease Varies

The Alzheimer’s Association survey of U.S. adults also

revealed that fewer non-White Americans report knowing

someone with Alzheimer’s. Four in 5 White Americans

(80%) report having known somebody with Alzheimer’s or

another type of dementia. The numbers among all other

groups are 15 to 20 percentage points lower (Hispanic

Americans, 64%; Black Americans, 65%; Asian Americans,

59%; and Native Americans, 65%).

Native Americans are least worried about developing

Alzheimer's disease, with 1 in 4 (25%) expressing concern,

followed by 1 in 3 Black Americans (35%) and 2 in 5

Hispanic Americans (41%). In contrast, almost half of White

Americans (48%) worry about it, as do nearly as many Asian

Americans (46%). Hispanic and Native Americans are also

more likely than other groups to believe they will not live

long enough to get Alzheimer’s or another dementia. More

than a third of Native Americans (35%) and one-quarter of

Hispanic Americans (28%) believe they will not live long

enough, versus fewer than 1 in 4 Asian Americans (19%),

Black Americans (20%) and White Americans (23%).

Additionally, more than half of non-White Americans

believe that significant loss of memory or cognitive abilities

is a “normal part of aging” rather than being an indicator of

disease (Hispanic Americans, 57%; Asian Americans, 56%;

Black Americans, 55%; and Native Americans, 53%).

Special Report — Race, Ethnicity and Alzheimer's in America

78 Alzheimer’s Association. 2021 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2021;17(3).

This is in contrast to White Americans, among whom

fewer than half (48%) believe that memory loss or

cognitive decline is normal.

Caregiving Is Stressful But Rewarding

The Alzheimer’s Association survey of caregivers provided

additional insights, indicating that for many family and

friends who provide care for a loved one, the rewards of

providing care may help balance the stress.

Over half of unpaid caregivers surveyed report providing

assistance with personal care, such as bathing, eating or

dressing. The percentage providing this form of care is

highest among Black caregivers (71%) and Hispanic

caregivers (68%), followed by Asian American caregivers

(59%), Native American caregivers (56%) and White

caregivers (53%).

Fewer Black Americans (78%) and Hispanic Americans

(83%) worry about being a burden on family if they

develop Alzheimer’s disease compared with other groups

(White Americans, 93%; Asian Americans, 90%; Native

Americans, 84%).

And while nearly 2 in 3 caregivers (64%) say that caregiving

is stressful, nearly all (92%) say that caregiving is rewarding,

as well.

Bridging Racial and Ethnic Barriers in

Alzheimer’s and Dementia Care: A Path Forward

Findings from the Alzheimer’s Association surveys indicate

that despite ongoing efforts to address health and health

care disparities in Alzheimer’s and dementia care, there is

still much work to do.

Current efforts to reduce health disparities, address social

determinants of health, build diversity in the health care

profession and train health care providers to meet the

needs of a growing population of older adults from

different racial and ethnic groups must be accelerated.

Amid broader calls for social justice, greater strides must be

made to eliminate discrimination and other forms of bias to

ensure all Americans have access to high quality dementia

care and support services, as well as opportunities to

participate in — and benefit from — Alzheimer’s research.

Based on the surveys’ findings, paths forward include:

• Preparing the workforce to care for a racially and

ethnically diverse population of older adults.

• Increasing diversity in dementia care.

• Engaging, recruiting and retaining diverse populations

in Alzheimer’s research and clinical trials.

Percentage

Percentage of U.S. Adults Who Believe Medical

Research Is Biased Against People of Color

FIGURE 20

31%

White

Americans

Hispanic

Americans

Black

Americans

Asian

Americans

Native

Americans

40%

36%

62%

45%

Percentage of U.S. Adults Who Trust an Alzheimer’s

Cure Will Be Shared Equally Regardless of Race, Color

or Ethnicity

FIGURE 21

Percentage

75%

65%

66%

53%

69%

White

Americans

Hispanic

Americans

Black

Americans

Asian

Americans

Native

Americans

Preparing the Workforce to Care for a Racially and

Ethnically Diverse Population of Older Adults

As described in the Prevalence Section (see page 18),

older Black and Hispanic Americans are more likely to

have Alzheimer’s or other dementias than Whites,

and this is likely due in part to health and health care

disparities.

85,87,271-277, 284, 285,287-288

Coinciding with increasing

diversity in the general population, the number of older

Americans, particularly the oldest-old (those age 85 or

older), is also expected to grow — with more than twice as

many cases of Alzheimer’s and other dementias anticipated

by 2050.

216

Up to 39% of this older adult population in

2050 will be minorities.

684-685

Current and future health care providers need to be

prepared to screen, diagnose and treat Alzheimer’s and

dementia in this expanding racially and ethnically diverse

population of older adults so that disparities are

not perpetuated.

Earlier reports on racial and ethnic differences in

Alzheimer’s health care have proposed cultural competence

education as one solution to address disparities. Training

providers to recognize and overcome implicit bias is

another method that organizations are using to

tackle disparities.

TABLE 22

White

Americans

Hispanic

Americans

Black

Americans

Asian

Americans

Native

Americans

Don’t want to be a guinea pig 49% 51% 69% 54% 51%

Treatment might cause sickness 37% 36% 45% 32% 18%

Time and cost might be too much 33% 26% 24% 43% 31%

Don’t trust pharmaceutical companies 28% 22% 29% 19% 26%

Doubt there would be any benefit 26% 26% 21% 28% 36%

Might get placebo 17% 12% 14% 20% 9%

Don’t trust medical research 10% 10% 24% 6% 16%

Unable to travel or get transportation 11% 11% 16% 19% 23%

Might not be treated fairly 3% 8% 22% 12% 10%

Reasons Cited By U.S. Adults for Not Being Interested in Clinical Trial Participation

Special Report — Race, Ethnicity and Alzheimer's in America

Cultural Competence

At the organizational level, cultural competence helps build

a diverse and inclusive workforce.

686

At the provider level,

cultural competence training equips professionals with the

skills and resources needed to connect with dementia care

recipients and caregivers across racial and ethnic groups in

a way that is sensitive to culture and language.

687

Elements of Cultural Competence

687

• A culturally diverse staff that reflects the

population served.

• Ability to overcome language barriers, either

with bilingual staff or interpreters.

• Training for providers on the cultures and

languages represented in the population.

• Patient materials and practice signage that are

translated and sensitive to cultural norms.

There have been several efforts to instill cultural

competence into dementia care. Stanford Health Care’s

Memory Support Program (MSP) is one such example.

The model’s efforts encompass culturally competent care

in inpatient and outpatient settings to ensure continuity

for patients and caregivers.

688

A case study showed that

MSP is a valuable way to provide culturally competent care

to African Americans and posits this model could be

implemented in other settings.

688

Cultural competence

80 Alzheimer’s Association. 2021 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2021;17(3).

comprehensive Implicit Bias Training Guide for primary

care physicians.

698-700

Increasing Diversity in Dementia Care

Trust in health care and perceptions of health care quality

are eroded when individuals experience racial and ethnic

discrimination in clinical settings. An analysis of data from

the 2015 to 2016 Adult California Health Interview Survey

found that discrimination in a clinical setting “make[s] a

person less likely to have a future interaction with health

care,” such as by not receiving medical care when necessary

or not filling prescriptions.

701

The Alzheimer’s Association surveys uncovered weaker

trust in the health care system among Hispanics, Blacks

and Native Americans. The same groups were also less

likely to see a health care provider for diagnosis or

treatment of Alzheimer’s disease. This could exacerbate

existing health disparities. Non-Whites surveyed already

face discrimination and anticipate encountering future

discrimination when seeking Alzheimer’s care, and as a result

want to see their racial and ethnic backgrounds reflected in

their Alzheimer’s and dementia health care providers.

Currently, only 1 in 3 U.S. physicians are Black, American

Indian or Alaska Native, Hispanic or Asian.

702

Primary care

is more diverse, which is encouraging. Approximately 40% of

primary care physicians are Black, Hispanic, American Indian

or Alaska Native.

703

As discussed in the Alzheimer’s

Association 2020 Alzheimer’s Disease Facts and Figures

Special Report,

531

primary care physicians play an important

role in diagnosing and caring for people with Alzheimer’s and

other dementias. The survey results presented earlier

indicate that Hispanic Americans may rely on their primary

care providers more than other groups to test for and

diagnose Alzheimer’s disease because they face barriers to

accessing specialists. Ensuring diversity in these frontline

providers may help reduce future disparities in dementia

care. Diversity in other related specialties, such as neurology

and geriatric medicine, however, remains low.

704-705

Shortages of physicians and other health care professionals

in underserved areas contribute to health disparities.

The racial and ethnic diversity of medical school applicants

is not keeping pace with shifting demographics of the

U.S. population. Half of applicants are White and almost

one-quarter are Asian.

706

Together, Blacks, Hispanics,

individuals who are Latino or of Spanish origin, and

American Indians or Alaska Natives make up only 15% of

applicants.

704

Since Blacks and American Indians or Alaska

Natives enrolled in medical school are two to three times

more likely than their White or Asian American counterparts

to practice in an underserved area, it is important to support

programs that recruit diverse students to medical schools in

greater numbers.

707

training has also been proposed as a component of

Alzheimer’s and dementia nursing and nursing assistant

training curricula.

689

Other organizations that engage health care providers who

may screen and treat individuals with dementia are also

committed to cultural competence. The U.S. Department

of Health and Human Services’ National Culturally and

Linguistically Appropriate Services (CLAS) Standards offer

information to improve communication with people from

different ethnic groups in a way that is respectful and

responsive to their culture.

684,690

Recognizing the changing

racial and ethnic demographics of Alzheimer’s disease, the

Alzheimer’s Association began promoting cultural

competence and cultural sensitivity in dementia care more

than a decade ago and this effort remains a priority.

691

In 2016, the American Geriatrics Society (AGS) formed an

Ethnogeriatrics Committee that issued a guidance

stressing the importance of cultural competence in

geriatric care.

684

An Ethnogeriatrics Special Interest Group

now convenes at the annual AGS meeting to discuss

ongoing projects and new developments in the field.

692

Implicit Bias

Implicit bias, or when people act unintentionally on

prejudices or stereotypes, is a key contributor to health

care disparities.

693-694

Implicit bias clouds decision-making

such that race, gender, ethnicity and other patient

characteristics influence how physicians treat people.

Medical schools are responding to the call to action to train

future physicians to recognize and overcome implicit bias.

Hospitals, clinics and health care systems are also working

to address this issue among their employees.

695

Although the Alzheimer’s Association surveys did not

explore how implicit bias is impacting dementia care,

respondents did indicate that they faced discrimination.

Discriminatory behaviors are often the result of implicit

bias.

696

A survey indicates that implicit bias held by the

investigators and clinical trial recruiters in the field of

cancer research may be a reason for the low recruitment

and participation of racial and ethnic minorities in cancer

clinical trials.

697

Less has been reported on how implicit bias

contributes to low participation rates in Alzheimer's and

dementia research and suggests an area for

future investigation.

There is little information about the implementation and

outcomes of implicit bias training specifically in Alzheimer’s

and dementia care. However, specialties that play a role in

dementia care, such as primary care/family medicine and

geriatric medicine, do have materials to train providers.

For example, the National Institute on Aging (NIA) offers

resources on implicit bias for those who care for older

adults, and The EveryONE Project from the American

Academy of Family Physicians recently introduced the

Developing a workforce that reflects the demographics

of individuals with Alzheimer’s or other dementias should

begin during outreach and recruitment to training

programs, continue with programming designed to support

racially and ethnically diverse students during their training

years, and extend to offering residency opportunities in

health care settings that treat diverse populations. In

addition, hiring practices should consider diversity and

inclusion to meet the needs of local patient populations.

Future Alzheimer’s and dementia research can be

strengthened by increasing the diversity of investigators

and professionals who conduct clinical trial and population

health research. Doing so introduces varied perspectives,

lived experiences and cultural nuances vital to culturally

accountable research. For example, one study found that

Black community liaisons were able to successfully recruit

Black participants to a dementia clinical trial when they

were the ones to explain and manage trial procedures.

708

The innovative Institute on Methods and Protocols for

Advancement of Clinical Trials in Alzheimer’s disease and

related dementias (IMPACT-AD) program launched in

fall of 2020 is a step toward this goal.

709

A major emphasis

of this intensive training course is to enhance future

Alzheimer’s and dementia research, especially clinical

trials. IMPACT-AD includes efforts to ensure program

participants reflect diversity across the spectrum. Its

inaugural class included physicians, nurses, public health

professionals, scientists and study coordinators, as well as

postdoctoral researchers and research fellows from

universities and health care systems across the country.

Participants included both early-career and established

professionals. Seventy percent were women and more than

half self-identified as people of color.

Engaging, Recruiting and Retaining Diverse Populations

in Alzheimer’s Research and Clinical Trials

There is a large body of evidence demonstrating low

diversity in clinical trials and research, and in Alzheimer’s

research the participants are mostly older non-Hispanic

Whites.

710-712

Efforts to ensure greater diversity in

Alzheimer’s disease research and clinical trials must be

accelerated. Without appropriate participation by Black,

Hispanic, Asian and Native Americans in Alzheimer’s clinical

trials and research, it is impossible to get a complete

understanding of how racial and ethnic differences may

affect the efficacy and safety of potential new treatments.

Future clinical trials must do more to reflect the entire

population so everyone benefits from advances in

Alzheimer’s research.

A critical first step to increasing diverse participation and

representation in clinical research is building and restoring

trust in underrepresented communities. One way to do so

is through community-based organizations (CBOs)

and other respected local partners.

710

These efforts are

gaining traction but should be expanded to more groups

and more communities. The Healthy Brain Initiative State

and Local Public Health Partnerships to Address Dementia:

2018-2023 Road Map, launched in partnership with the

Alzheimer’s Association and the Centers for Disease

Control and Prevention (CDC), is organized around a core

principle of “eliminating disparities and collaborating across

multiple sectors.” In addition, the Alzheimer's Association

and CDC collaborated to develop the first-ever Healthy

Brain Initiative Road Map for Indian Country. The Association

has used this guidebook to build relationships with

American Indian/Alaska Native communities, raise

awareness about Alzheimer's and collaborate with national

partners on communications tailored to the unique tribal

traditions present in American Indian/Alaska Native

communities.

713-714

To succeed, relationships with CBOs must demonstrate

that they are sustainable, transparent and integrated with

other public health efforts. Strong community relationships

can serve to address misconceptions and mistrust about

research because the community has a sense of ownership

in the research initiative.

715-716

Participants are stakeholders

rather than bystanders or subjects in the endeavor.

This could make a difference in reinstating trust that

Alzheimer’s treatments or cures will be shared equitably.

For example, a recent report suggests that strong

commitment to earning the trust of the Black community

is essential to encourage their participation in research.

717

The Alzheimer’s Association is working with several

CBOs and other groups to educate and engage diverse

communities about Alzheimer’s disease and care and

support services the Association provides. National

partnerships include those with the African Methodist

Episcopal Church, the National Hispanic Council on Aging

and SAGE (Advocacy & Services for LGBTQ Elders). In early

2021, the Association announced new partnerships with

the Thurgood Marshall College Fund and Tzu Chi USA.

Local Association chapters are also working with various

nearby groups to engage diverse communities. In addition,

several chapters are working with promotoras de salud

(community health workers) to provide Alzheimer’s

education and resources to Spanish-speaking communities.

Other notable but relatively new efforts to increase

recruitment and retention of diverse groups are also

underway. In 2018, the NIA released its National Strategy

for Recruitment and Participation in Alzheimer’s and

Related Dementias Research. The strategy outlines

practical, proactive approaches to help dementia study

sites engage a wider, more diverse group of volunteers.

718

Special Report — Race, Ethnicity and Alzheimer's in America

82 Alzheimer’s Association. 2021 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2021;17(3).

New guidance released in late 2020 by the U.S. Food and

Drug Administration aimed at enabling greater diversity

in clinical trials through changes to eligibility criteria,

enrollment practices and trial designs is a welcome

development. This guidance offers new approaches to help

Alzheimer’s and dementia researchers navigate current

barriers that hinder clinical trial recruitment of racial

and ethnic minorities. These barriers include strict eligibility

requirements, participant burden, and lack of culturally

appropriate communication and outreach to build trust

with these diverse populations.

719

In December 2020, the Alzheimer’s Association and the

American College of Radiology announced the opening

of recruitment for the New IDEAS study with particular

focus on outreach in Black and Hispanic communities.

New IDEAS will enroll 7,000 participants, including 2,000

Hispanics/Latinos and 2,000 Blacks/African Americans.

New IDEAS will build upon the original IDEAS study, which

provided the strongest phase 4 data to date supporting

the clinical value of brain amyloid positron emission

tomography (PET) scans. The goal of New IDEAS is to

determine if using a brain amyloid PET scan can help

inform an individual’s memory care plan and improve

their health outcomes.

720-722

Conclusion

The Alzheimer’s Association surveys of U.S. adults and

caregivers of individuals with cognitive issues are among

the first to explore perspectives and experiences of

different racial and ethnic groups as they relate to health

care for Alzheimer’s and other dementias. Collectively, the

responses indicate that organizations must remain

committed to addressing health and health care disparities

for older adults. Disparities in Alzheimer’s and dementia

care are the result of deeply rooted issues in society and

the health care system. The NIA Health Disparities

Research Framework

723

recommends responses that are

multi-level and consider factors and risks over the

lifecourse to address these disparities. Actions and

solutions are needed to ensure that the already devastating

burden of Alzheimer’s disease and other dementias on

disproportionately affected racial and ethnic groups is not

made worse by discrimination and health inequities in the

current health care system.

A1. Estimated prevalence (number and proportion) of Americans age

65 and older with Alzheimer’s dementia for 2021: The number

6.2 million is from updated prevalence estimates based on data

from the Chicago Health and Aging Project (CHAP) and

population projections from the U.S. Census.

216

The number

is higher than previous estimates from CHAP data and the

US census because it used more recently updated Census

projections and incorporated information on the prevalence

of Alzheimer’s dementia for Hispanic/Latino Americans.

A2. Differences between CHAP and ADAMS estimates for

Alzheimer’s dementia prevalence: The number of people in the

U.S. living with Alzheimer’s dementia is higher in CHAP than in

the Aging, Demographics, and Memory Study (ADAMS).

216,219

This discrepancy is mainly due to two differences in diagnostic

criteria: (1) a diagnosis of dementia in ADAMS required

impairments in daily functioning and (2) people determined to

have vascular dementia in ADAMS were not also counted as

having Alzheimer’s, even if they exhibited clinical symptoms of

Alzheimer’s.

218

Because the more stringent threshold for

dementia in ADAMS may miss people with mild Alzheimer’s

dementia and because clinical-pathologic studies have shown

that mixed dementia due to both Alzheimer’s and vascular

pathology in the brain is very common,

the Association believes

that the larger CHAP estimates may be a more relevant estimate

of the burden of Alzheimer’s dementia in the United States.

A3. State-by-state prevalence of Alzheimer’s dementia: These

state-by-state prevalence numbers are based on an analysis of

incidence data from CHAP, projected to each state’s population

for 2020 and 2025, with adjustments for state-specific age,

gender, years of education, race and mortality.

239

These

projections come from a previous analysis of CHAP data that is

not the same as the analysis providing the total number for the

United States in 2021. State-by-state projections are not

available for 2021.

A4. Criteria for identifying people with Alzheimer’s or other

dementias in the Framingham Heart Study: From 1975 to 2009,

7,901 people from the Framingham Study who had survived free

of dementia to at least age 45, and 5,937 who had survived free

of dementia until at least age 65 were followed for incidence of

dementia.

244

Diagnosis of dementia was made according to the

Diagnostic and Statistical Manual of Mental Disorders, 4th Edition

(DSM-IV) criteria and required that the participant survive for at

least 6 months after onset of symptoms. Standard diagnostic

criteria (the NINCDS-ADRDA criteria from 1984) were used to

diagnose Alzheimer’s dementia. The definition of Alzheimer’s and

other dementias used in the Framingham Study was very strict;

if a definition that included milder disease and disease of less

than six months’ duration were used, lifetime risks of Alzheimer’s

and other dementias would be higher than those estimated by

this study.

A5. Projected number of people with Alzheimer’s dementia,

2020-2060: This figure comes from the CHAP study.

216

Other projections are somewhat lower (see, for example,

Brookmeyer et al.

724

) because they relied on more conservative

methods for counting people who currently have Alzheimer’s

dementia.

Nonetheless, these estimates are statistically

consistent with each other, and all projections suggest

substantial growth in the number of people with Alzheimer’s

dementia over the coming decades.

A6. Annual mortality rate due to Alzheimer’s disease by state:

Unadjusted death rates are presented rather than age-adjusted

death rates in order to provide a clearer depiction of the burden

of mortality for each state. States such as Florida with larger

populations of older people will have a larger burden of mortality

due to Alzheimer’s — a burden that appears smaller relative to

other states when the rates are adjusted for age.

A7. Number of family and other unpaid caregivers of people with

Alzheimer’s or other dementias: To calculate this number, the

Alzheimer’s Association started with data from the Behavioral

Risk Factor Surveillance System (BRFSS) survey. Between 2015

and 2019, 44 states and the District of Columbia utilized the

BRFSS caregiver module. This module identified respondents

age 18 and over who had provided any regular care or assistance

during the past month to a family member or friend who had a

health problem, long-term illness or disability. The module asks

a series of follow-up questions, including asking the caregiver

to identify what the main health problem, long-term illness, or

disability that the person they care for has. One of the reported

condition categories is Alzheimer’s disease, dementia, or other

cognitive impairment. This number does not include caregivers

whose caregiving recipient has dementia, but is not their main

condition. To calculate the total percentage of adults that are

caregivers for individuals living with dementia, data collected in

2019 by the National Alliance for Caregiving (NAC)/AARP was

also utilized. The NAC/AARP survey asked respondents age 18

and over whether they were providing unpaid care for a relative

or friend age 18 or older or had provided such care during the

past 12 months. Respondents who answered affirmatively were

then asked about the health problems of the person for whom

they provided care: 11% of respondents reported dementia

as the main condition of their care recipient, while 26% of all

respondents reported the presence of dementia. Using this

ratio in combination with BRFSS data, the Alzheimer’s

Association was able to determine the percentage of adults in

44 states and the District of Columbia who are caregivers for

individuals living with Alzheimer’s or another dementia. For the

6 states without 2015-2019 BRFSS data, this percentage was

estimated using state-specific BRFSS data from 2009 combined

with the aggregated average of BRFSS data from 2015-2017.

To determine the number of Alzheimer’s and dementia

caregivers in each state, the percentages were applied to the

estimated number of people age 18 and older in each state in

July 2020, using U.S. Census Bureau data available at: https://

www.census.gov/programs-surveys/popest/technical-

documentation/research/evaluation-estimates.html. This

resulted in a total of 11.199 million Alzheimer’s and dementia

caregivers across all 50 states and the District of Columbia.

A8. The 2014 Alzheimer’s Association Women and Alzheimer’s

Poll: This poll questioned a nationally-representative sample

of 3,102 American adults about their attitudes, knowledge

and experiences related to Alzheimer’s and dementia from

Jan. 9, 2014, to Jan. 29, 2014. An additional 512 respondents

who provided unpaid help to a relative or friend with

Alzheimer’s or a related dementia were asked questions about

their care provision. Random selections of telephone numbers

from landline and cell phone exchanges throughout the

United States were conducted. One individual per household

was selected from the landline sample, and cell phone

respondents were selected if they were 18 years old or older.

Interviews were administered in English and Spanish. The poll

“oversampled” Hispanics/Latinos, selected from U.S. Census

tracts with higher than an 8% concentration of this group. A

list sample of Asian Americans was also utilized to oversample

this group. A general population weight was used to adjust for

number of adults in the household and telephone usage; the

second stage of this weight balanced the sample to estimated

U.S. population characteristics. A weight for the caregiver

sample accounted for the increased likelihood of female and

white respondents in the caregiver sample. Sampling weights

were also created to account for the use of two supplemental

list samples. The resulting interviews comprise a probability-

based, nationally representative sample of U.S. adults. A

caregiver was defined as an adult over age 18 who, in the past

12 months, provided unpaid care to a relative or friend age

50 or older with Alzheimer’s or another dementia.

Questionnaire design and interviewing were conducted by

Abt SRBI of New York.

Appendices

End Notes

Appendices

84 Alzheimer’s Association. 2021 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2021;17(3).

A9. Number of hours of unpaid care: The BRFSS survey asks

caregivers to identify, within five time frames, the number of

hours they provide care in an average week. Using the method

developed by Rabarison and colleagues,

725

the Alzheimer’s

Association assumed the midpoint of each time frame was the

average number of hours for each caregiver within that time

frame and then calculated the overall average number of hours

of weekly care provided by dementia caregivers in each state.

This number was then converted to a yearly average and

multiplied by the number of caregivers in each state

determine the total number of hours of care provided. For the 6

states without recent BRFSS data, their number of hours was

calculated using the aggregated average of BRFSS data from

2015-2017. When added together, across all 50 states and the

District of Columbia, the total number of hours provided by

Alzheimer’s and dementia caregivers is 15.338 billion hours.

A10. Value of unpaid caregiving: For each state, the hourly value

of care was determined as the average of the state minimum

hourly wage

726

and the state median hourly cost of a home

health aide.

616

The average for each state was then multiplied by

the total number of hours of unpaid care in that state

to derive

the total value of unpaid care. Adding the totals from all states

and the District of Columbia resulted in an economic value

of $256,650 billion for dementia caregiving in the United States

in 2020.

A11. Lewin Model on Alzheimer’s and dementia costs: These numbers

come from a model created for the Alzheimer’s Association by

the Lewin Group. The model estimates total payments for health

care, long-term care and hospice — as well as state-by-state

Medicaid spending — for people with Alzheimer’s and other

dementias. The model was updated by the Lewin Group in

January 2015 (updating previous model) and June 2015

(addition of state-by-state Medicaid estimates). Detailed

information on the model, its long-term projections and its

methodology are available at alz.org/trajectory. For the purposes

of the data presented in this report, the following parameters of

the model were changed relative to the methodology outlined at

alz.org/trajectory: (1) cost data from the 2011 Medicare Current

Beneficiary Survey (MCBS) were used rather than data from the

2008 MCBS; (2) prevalence among older adults was assumed to

equal the prevalence levels from Rajan and colleagues

216

and

included in this report (6.2 million in 2021), rather than the

prevalence estimates derived by the model itself; (3) estimates of

inflation and excess cost growth reflect the most recent relevant

estimates from the cited sources (Centers for Medicare &

Medicaid Services [CMS] actuaries and the Congressional Budget

Office); and (4) the most recent (2014) state-by-state data from

CMS on the number of nursing home residents and percentage

with moderate and severe cognitive impairment were used in lieu

of 2012 data.

A12. All cost estimates were inflated to year 2020 dollars using the

Consumer Price Index (CPI): All cost estimates were inflated

using the seasonally adjusted average prices for medical care

services from all urban consumers. The relevant item within

medical care services was used for each cost element. For

example, the medical care item within the CPI was used to inflate

total health care payments; the hospital services item within the

CPI was used to inflate hospital payments; and the nursing home

and adult day services item within the CPI was used to inflate

nursing home payments.

A13. Medicare Current Beneficiary Survey Report: These data come

from an analysis of findings from the 2011 Medicare Current

Beneficiary Survey (MCBS). The analysis was conducted for the

Alzheimer’s Association by Avalere Health.

240

The MCBS, a

continuous survey of a nationally representative sample of about

15,000 Medicare beneficiaries, is linked to Medicare claims. The

survey is supported by the U.S. Centers for Medicare & Medicaid

Services (CMS). For community-dwelling survey participants,

MCBS interviews are conducted in person three times a year

with the Medicare beneficiary or a proxy respondent if the

beneficiary is not able to respond. For survey participants who

are living in a nursing home or another residential care facility,

such as an assisted living residence, retirement home or a

long-term care unit in a hospital or mental health facility, MCBS

interviews are conducted with a staff member designated by the

facility administrator as the most appropriate to answer the

questions. Data from the MCBS analysis that are included in

2021 Alzheimer’s Disease Facts and Figures pertain only to

Medicare beneficiaries age 65 and older. For this MCBS analysis,

people with dementia are defined as:

• Community-dwelling survey participants who answered yes to

the MCBS question, “Has a doctor ever told you that you had

Alzheimer’s disease or dementia?” Proxy responses to this

question were accepted.

• Survey participants who were living in a nursing home or other

residential care facility and had a diagnosis of Alzheimer’s

disease or dementia in their medical record.

• Survey participants who had at least one Medicare claim with a

diagnostic code for Alzheimer’s or other dementias in 2008.

The claim could be for any Medicare service, including hospital,

skilled nursing facility, outpatient medical care, home health

care, hospice or physician, or other health care provider visit.

The diagnostic codes used to identify survey participants with

Alzheimer’s or other dementias are 331.0, 331.1, 331.11,

331.19, 331.2, 331.7, 331.82, 290.0, 290.1, 290.10, 290.11,

290.12, 290.13, 290.20, 290.21, 290.3, 290.40, 290.41,

290.42, 290.43, 291.2, 294.0, 294.1, 294.10 and 294.11.

Costs from the MCBS analysis are based on responses from

2011 and reported in 2020 dollars.

A14. Differences in estimated costs reported by Hurd and colleagues:

Hurd and colleagues

577

estimated per-person costs using data

from participants in ADAMS, a cohort in which all individuals

underwent diagnostic assessments for dementia. 2021

Alzheimer’s Disease Facts and Figures estimated per-person costs

using data from the Medicare Current Beneficiary Survey

(MCBS) to be $52,481. One reason that the per-person costs

estimated by Hurd and colleagues are lower than those reported

in Facts and Figures is that ADAMS, with its diagnostic evaluations

of everyone in the study, is more likely than MCBS to have

identified individuals with less severe or undiagnosed Alzheimer’s.

By contrast, the individuals with Alzheimer’s registered by MCBS

are likely to be those with more severe, and therefore more

costly, illness. A second reason is that the Hurd et al. Estimated

costs reflect an effort to isolate the incremental costs associated

with Alzheimer’s and other dementias (those costs attributed

only to dementia), while the per-person costs in 2021 Alzheimer’s

Disease Facts and Figures incorporate all costs of caring for

people with the disease (regardless of whether the expenditure

was related to dementia or a coexisting condition).

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Health 2018;108(10):1370–7.

726. U.S. Department of Labor. Changes in Basic Minimum

Wages in Non-Farm Employment Under State Law: Selected

Years 1968 to 2020. Available at: https://www.dol.gov/

agencies/whd/state/minimum-wage/history. Accessed

January 13, 2021.

The Alzheimer’s Association acknowledges

the contributions of Joseph Gaugler, Ph.D.,

Bryan James, Ph.D., Tricia Johnson, Ph.D.,

Jessica Reimer, Ph.D., and Jennifer Weuve,

M.P.H., Sc.D., in the preparation of 2021

Alzheimer’s Disease Facts and Figures.

Our mission: The Alzheimer’s Association

leads the way to end Alzheimer’s and all other

dementia — by accelerating global research,

driving risk reduction and early detection,

and maximizing quality care and support.

Our vision: A world without Alzheimer’s and

all other dementia.

Alzheimer’s Association

225 N. Michigan Ave., Fl. 17

Chicago, IL 60601-7633

800.272.3900

alz.org

This is an oﬃcial publication of the Alzheimer’s Association

but may be distributed freely and without charge by

unaﬃliated organizations and individuals. Such distribution

does not constitute an endorsement of these parties or

their activities by the Alzheimer’s Association.