Fewer than 1 in 5 Americans (18%) are familiar with mild cognitive

Fewer than 1 in 5 Americans

(18%) are familiar with mild

cognitive impairment (MCI).

MORE THAN NORMAL AGING:

UNDERSTANDING MILD

COGNITIVE IMPAIRMENT

SPECIAL REPORT

What does one do if these changes are not

a result of normal aging, but caused by disease

— oﬀering a potential indicator of future

cognitive decline and premature death? As

the size of the United States’ older population

grows dramatically over the next 30 years,

more individuals and their physicians will

confront this question.

Confronting MCI and Why It Matters

Mild cognitive impairment (MCI) causes cognitive changes

that are serious enough to be noticed by the person

affected and by family members and friends, but may not

affect the individual’s ability to carry out everyday

activities. Approximately 12% to 18% of people age 60 or

older are living with MCI.

738

The population of Americans

age 60 and older has grown more than 30% over the

past decade,

739

and the number of older individuals in the

United States is expected to increase significantly by 2050

(see Prevalence section, page 19).

218,220-221

These aging

individuals are potentially at higher risk of developing MCI.

Subtle cognitive changes, such as those in memory

and thinking, are often a feature of aging.

“Mild cognitive impairment (MCI)

is an early stage of memory loss or

other cognitive ability loss (such as

language or visual/spatial perception)

in individuals who maintain the

ability to independently perform most

activities of daily living.”

738

MCI is characterized by subtle changes in memory and

thinking. MCI is sometimes confused with normal aging,

but it is not part of the typical aging process. A variety of

factors can cause MCI, so it is viewed as a broad set of

symptoms; this can make the diagnosis of MCI challenging

for affected individuals and physicians. When a person

exhibits symptoms of MCI and has biomarker evidence of

the brain changes characteristic of Alzheimer’s disease,

they are described as having MCI due to Alzheimer’s

disease — a subtype of MCI.

738

For the purposes of this Special Report, the term MCI

refers to “syndromic” MCI of unknown cause or due to

causes other than the brain changes associated with

Alzheimer’s disease. The term MCI due to Alzheimer’s disease

is used to describe MCI with the presence of Alzheimer’s

disease-related biomarkers.

Individuals with MCI may have a higher risk of developing

dementia. Studies estimate that 10% to 15% of individuals

with MCI go on to develop dementia each year.

48,740-741

About one-third of people with MCI develop dementia due

to Alzheimer’s disease within five years.

However, some

individuals with MCI revert to normal cognition or do not

have additional cognitive decline.

738,740

Identifying which individuals with MCI are more likely to

develop dementia is a major goal of current research.

Distinguishing between cognitive issues resulting from

normal aging, those associated with the broad syndrome

of MCI, and those related to MCI due to Alzheimer’s disease

is critical in helping individuals, their families and physicians

prepare for future treatment and care.

MCI Diagnosis and Treatment

MCI is classified as one of two types based on a person’s

symptoms: amnestic (memory issues predominate) or

nonamnestic (other cognitive issues, such as impaired

language, visuospatial abilities, or executive function,

predominate).

48,738

For example, a person with amnestic

MCI could forget conversations or misplace items in their

82 Alzheimer’s Association. 2022 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2022;18.

Strongest risk factors for MCI

740

• Increasing age.

• Having a specific form of the Apolipoprotein

E gene (APOE-e4) that has been linked to

Alzheimer's disease.

• Some medical conditions and other factors,

such as:

- Diabetes

- Smoking

- High blood pressure

- High cholesterol

- Obesity

- Depression

- Sedentary lifestyle

- Infrequent participation in mentally

or socially stimulating activities

home, whereas a person with nonamnestic MCI could

have difficulty keeping their train of thought during

a conversation, finding their way around a once familiar

place, or finishing everyday tasks, such as paying a bill.

742

The number of people living with MCI increases with

age (Table 22).

One in four individuals age 80 to 84

experience symptoms of MCI (Table 22).

MCI can be caused by a variety of factors, such as

medication side effects, sleep deprivation or anxiety.

740

MCI may also develop as part of neurologic,

neurodegenerative, systemic or psychiatric disorders,

as well as stroke or other vascular disease and traumatic

brain injury.

48,742

MCI can also arise from the brain

changes that occur in Alzheimer’s disease.

To diagnose MCI, physicians conduct a review of the

patient’s medical history and use patient questionnaires,

clinical exams and brief assessments to evaluate thinking

and memory function. Cognitive assessment tools evaluate

cognitive impairment by testing memory (the ability to

learn and recall new information) and measuring changes

in reasoning, problem-solving, planning, naming,

comprehension and other cognitive skills.

Sometimes, diagnosis of MCI requires ruling out other

systemic or brain diseases, such as Alzheimer’s disease,

Parkinson’s disease, dementia with Lewy bodies

(associated with rapid eye movement sleep abnormalities),

cerebrovascular disease in the blood vessels that support

the brain, or prion disease or cancer (characterized by more

rapid cognitive decline).

Although patient-reported symptoms and the results from

screening tools and clinical exams provide clues about

whether a person has MCI, there is no test that can give a

definitive diagnosis.

738,740

Currently there is no specific treatment for MCI.

48,743

In some cases, physicians may be able to identify reversible

causes of cognitive impairment, such as depression,

medication side effects or sleep apnea. They may also

recommend exercise and healthy lifestyle interventions to

help improve cognitive function and quality of life.

Once someone is diagnosed with MCI, the outcome can

vary depending on the underlying cause and other

factors. For some individuals, MCI may be a transitional

state between normal cognitive aging and dementia.

738,744

In some cases, however, MCI will revert to normal cognition

or remain stable. For example, MCI that is linked to use of

a medication may resolve when the medication is changed

or discontinued. According to new research, nearly half

of people diagnosed with MCI did not progress to dementia

and were cognitively normal when they were evaluated

2.4 years after their MCI diagnosis.

745

MCI Due to Alzheimer’s Disease: A Distinct

Condition

Although the symptoms of MCI due to Alzheimer’s

disease are no different than syndromic MCI, MCI due

to Alzheimer’s disease has a very specific underlying

cause. MCI due to Alzheimer’s disease is caused by distinct

biological changes that lead to the damage and death of

nerve cells in the brain.

38,738

MCI due to Alzheimer’s disease

is the symptomatic precursor to Alzheimer’s dementia

(see Alzheimer’s Disease Continuum and Figure 1, page 9).

Prevalence

60-64 6.7%

65-69 8.4%

70-74 10.1%

75-79 14.8%

80-84 25.2%

Prevalence of Mild Cognitive Impairment in Older

Adults by Age

Age

table

Created from data from Petersen et al.

In fact, today, physicians can use biomarkers of

Alzheimer’s disease to diagnose MCI due to Alzheimer’s

disease. Biomarker tests measure beta-amyloid (Aβ)

deposits, pathologic tau and other hallmarks of Alzheimer’s

disease-related neurodegeneration; these biomarkers can

be detected in brain images or measured in cerebrospinal

fluid (CSF).

746

Some biomarker tests, such as positron

emission tomography (PET) imaging to look for beta-

amyloid deposits or pathologic tau in the brain and

measurement of a type of beta-amyloid called Aβ

CSF are readily available to physicians, whereas others

are currently limited to clinical research.

746-747

Unfortunately, not all physicians and patients have access

to biomarker testing methods, and not all patients are

referred for a more thorough evaluation after MCI is

diagnosed based on the symptoms. New blood tests are

under development that provide simple, accurate,

non-invasive detection of Alzheimer’s disease biomarkers

— sometimes even before symptoms appear. For now,

these blood-based biomarker tests are for research use

only and not available in everyday medical practice, but

they hold promise for identifying patients at risk of MCI

due to Alzheimer’s disease earlier in the disease process.

747

Estimates suggest that roughly 5 million Americans have

MCI due to Alzheimer’s disease (see Prevalence section,

pages 20-21). Because MCI develops years before

dementia and potentially affects individuals younger than

65, there are likely far more than 5 million Americans —

of any age — with MCI due to Alzheimer’s disease (see

Prevalence section, pages 20 and 21). Blood-based

biomarkers are expected to make it easier to identify

individuals with MCI due to Alzheimer’s disease as part of

routine clinical practice. Until then, the true number of

individuals living with MCI due to Alzheimer’s disease

remains unknown.

Progression to Alzheimer’s Dementia Is

Not Certain

Evidence suggests that over a 5- to 10-year period after

a diagnosis of MCI due to Alzheimer’s disease, 30% to 50%

of people progress to Alzheimer’s dementia.

49,586

Up to

3 in 20 (15%) people who have amnestic MCI are estimated

to progress to Alzheimer’s dementia in that period, and

research indicates that progression to dementia may

be more likely for people with this subtype of MCI due

to Alzheimer’s disease.

586,744

Not everyone who has MCI due

to Alzheimer’s disease will go on to

develop Alzheimer’s dementia.

MCI Due to Alzheimer’s Disease Represents

a Critical Turning Point in the Alzheimer’s

Disease Continuum

A key consideration for managing Alzheimer’s disease

is determining when to intervene. Researchers have long

posited that pharmacologic treatments, or medications,

aimed at slowing or stopping the progression of

Alzheimer’s disease to dementia and preserving brain

function are most effective when administered early in

the disease process.

Accurate diagnosis of MCI due to Alzheimer’s disease,

prior to the development of dementia, is thus crucial in

identifying individuals who might benefit from early

treatment. Initiation of treatment earlier in the disease

process may also be associated with lower overall health

care costs, as progression to dementia and the need for

costly assisted living, nursing home and other types of

residential care is postponed (see Use and Costs of Health

Care, Long-Term Care and Hospice section, page 60).

Intervening earlier also offers significant benefits for

diagnosed individuals, potentially allowing them more time

to live independently while enjoying a higher quality of life.

The last 20 years has marked an acceleration in the

development of a new class of treatments that target the

underlying biology and aim to slow the progression of

Alzheimer’s disease. As of the writing of this report,

104 disease-modifying treatments are being evaluated in

clinical trials or are at various stages of regulatory approval,

including monoclonal antibodies, such as aducanumab,

donanemab, lecanemab, gantenerumab and others.

748-749

The recent accelerated approval of aducanumab by the

U.S. Food and Drug Administration is generating

momentum and spurring progress for the development

and approval of potential therapies aimed at slowing the

progression of MCI due to Alzheimer’s disease and mild

Alzheimer’s dementia.

84 Alzheimer’s Association. 2022 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2022;18.

Understanding MCI and MCI Due to

Alzheimer’s Disease Today: Adult and Primary

Care Physician Surveys

To better understand real-world awareness, diagnosis and

treatment of MCI and MCI due to Alzheimer’s disease in the

United States, the Alzheimer’s Association commissioned

Versta Research to conduct surveys of U.S. adults and

primary care physicians (PCPs). Surveys across both groups

explored wide-ranging issues related to MCI and MCI due

to Alzheimer’s disease, including concern and awareness of

MCI, attitudes about diagnosis, challenges in diagnosis,

clinical management and treatment of MCI, including MCI

due to Alzheimer’s disease, and views on future disease-

related treatments. Attitudinal differences among racial

and ethnic groups were also investigated.

Key Findings

The Alzheimer’s Association surveys revealed:

Americans’ awareness of MCI is low.

• Fewer than 1 in 5 Americans (18%) are familiar with

MCI. Familiarity with MCI is low across all racial and

ethnic groups surveyed: White Americans (18%), Asian

Americans (18%), Native Americans (18%), Black

Americans (18%) and Hispanic Americans (17%).

• More than 2 in 5 Americans (43%) report they have

never heard of MCI.

• When prompted with a description of MCI more

than half of all Americans (55%) say MCI sounds like

“normal aging.”

When MCI and MCI due to Alzheimer’s disease are

described, Americans express concern, but also reluctance

to see their doctor.

• Nearly one-half of Americans (47%) say they worry

about developing MCI in the future. More than 4 in 10

Americans (42%) say they worry about developing MCI

due to Alzheimer’s disease.

• A large majority of Americans (85%) say they would

want to know if they had Alzheimer’s disease early,

including during the MCI stage (54%) and mild

Alzheimer’s disease stage (31%). Reasons cited most

often for wanting to know early include planning for

the future (70%), allowing for earlier treatment

of symptoms (70%), taking steps to preserve existing

cognitive function (67%) and to understand what is

happening (66%).

• Yet only 4 in 10 Americans (40%) say they would talk to

their doctor right away when experiencing symptoms

of MCI. More than half of Americans (57%) say they

would wait until they had symptoms for a while (33%),

wait until symptoms worsened (12%) or wait until others

expressed concern (12%).

• Overall, almost 8 in 10 Americans (78%) express

concerns about seeing a doctor in the wake of MCI

symptoms. Concerns cited most often include receiving

an incorrect diagnosis (28%), learning of a serious health

problem (27%), receiving unnecessary treatment (26%)

and believing symptoms might go away (23%).

PCPs believe it is important to diagnose MCI, including

MCI due to Alzheimer’s disease, but challenges in

diagnosis persist.

• An overwhelming majority of PCPs surveyed say it is

important to diagnose MCI (98%) and MCI due to

Alzheimer’s disease (90%). One-third of PCPs (35%),

however, are not fully comfortable diagnosing MCI and

more than one-half of PCPs (51%) say they are not fully

comfortable diagnosing MCI due to Alzheimer’s disease.

• Nearly all PCPs (96%) say it is important to assess

patients age 60 and older for cognitive impairment, but

report that they conduct assessments for just half (48%)

of their patients age 60 and older.

• When making an MCI diagnosis, the most frequently

cited challenges by PCPs include difficulty in

differentiating MCI from normal aging (72%) and

difficulty in interpreting patient reports of daily

functioning (51%).

• When diagnosing MCI due to Alzheimer’s disease, top

challenges cited by PCPs include lack of specialists/

facilities to perform diagnostic testing (51%), patient

reluctance to pursue follow-up testing (49%) and PCP

reluctance to diagnose a condition that has limited

treatment options (47%).

• Nine in 10 PCPs (90%) say it is hard to know where MCI

ends and dementia begins.

PCPs say early intervention can slow progression of

cognitive decline, but many are unfamiliar with clinical

trials and research advances that may help diagnose and

manage MCI and MCI due to Alzheimer’s disease now

and in the future.

• The vast majority of PCPs (86%) say that early

intervention can slow progression of cognitive decline.

When MCI is detected in patients, PCPs most often

recommend lifestyle changes (73%), perform laboratory

testing for reversible causes of MCI (70%) and/or refer

patients to a specialist (53%).

• Only 4 in 10 PCPs (40%) say they are familiar (7% very

familiar and 33% somewhat familiar) with current

biomarker tests to aid in the diagnosis of Alzheimer’s

disease, and they refer fewer than 1 in 5 patients (18%)

for biomarker testing for Alzheimer’s disease when MCI

is detected.

• One in 5 PCPs (20%) report being familiar with clinical

trials available to their patients with MCI.

• Only 1 in 4 PCPs (23%) say they are familiar with

new therapies in the pipeline to address MCI due to

Alzheimer’s disease.

Survey Design and Research

Methods

Survey of U.S. Adults

A survey of 2,434 U.S. adults age 18 and older

was conducted from November 5, 2021, to

December 5, 2021. Respondents included 662

who were age 60 or older, and 1,772 who were

age 18 to 59. The survey included a probability

sample of 2,099 Americans fielded by NORC

at the University of Chicago via the AmeriSpeak®

panel. It was offered online or as a phone

survey in English or Spanish. Hispanic (n=328),

Black (n=342), and Asian Americans (n=318)

were oversampled and weighted back to their

true population proportions for analysis and

reporting. The probability sample of all

Americans was additionally supplemented with

an oversample of Native Americans (n=335)

using non-probability online research methods.

The Native American oversample was stratified

and weighted by gender, age, income and

education to match U.S. Census Bureau data.

Survey of U.S. Primary Care Physicians

(PCPs)

A survey of 801 primary care physicians (M.D.

or D.O.) was conducted from November 1,

2021, to November 22, 2021. Physicians were

recruited via WebMD’s Medscape physician

network, which includes 70% of all practicing

primary care physicians in the United States.

Sampling was stratified and weighted by type

of practice, specialty, years in practice and

region using benchmarks from the American

Medical Association Masterfile of all practicing

physicians in the U.S. To be included in the

survey, physicians had to have been in practice

for at least two years and spend at least 50% of

their time in direct patient care, with at least

10% of their patients being age 60 or older.

Physicians included in the survey reported

spending an average (mean) of 93% of their

time in direct patient care, and reported that

45% of their patients were age 60 years or

older. Years in practice ranged from 2 years to

54 years, with a mean of 20 years. Primary

medical specialties represented were internal

medicine (49%), family medicine (48%) and

general practitioner (3%).

Consumers and PCPs express optimism for future

Alzheimer’s disease treatments.

• More than 7 in 10 Americans (73%) expect new

treatments to delay the progression of Alzheimer’s

disease to be available within the next decade. Six in 10

Americans (60%) anticipate new treatments to stop the

progression of Alzheimer’s disease. More than one-half

of all Americans (53%) believe there will be new

treatments to prevent Alzheimer’s disease.

• PCPs also expressed optimism for future Alzheimer’s

disease treatments. More than 4 in 5 PCPs (82%)

expect there will be new treatments to delay the

progression of Alzheimer’s disease during the next

decade. More than half of PCPs (54%) anticipate there

will soon be treatments to stop Alzheimer’s disease

progression. Less than half (42%) anticipate new

treatments to prevent Alzheimer’s disease.

Survey Results

Public Awareness of MCI

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

that fewer than 1 in 5 Americans (18%) are familiar with

MCI (Figure 18 Left, page 86). Awareness and understanding

of MCI is low across all racial and ethnic groups surveyed:

White Americans (18%), Asian Americans (18%), Native

Americans (18%), Black Americans (18%) and Hispanic

Americans (17%). More than 2 in 5 Americans (43%) report

they have never heard of MCI (Figure 18 Left, page 86).

Americans aged 60 and older indicated no greater

awareness of MCI despite being the most likely age group

to develop the disease.

When prompted with a description of MCI, more than

half of Americans (55%) say it sounds like normal aging

(Figure 18 Right, page 86). Black and Asian Americans (58%)

were most likely to associate symptoms of MCI with normal

aging, followed by Hispanic (55%), White (53%) and Native

Americans (47%).

The PCP survey echoes these findings, with only 1 in 8

PCPs (13%) saying they believe that patients with whom

they have discussed MCI have a strong understanding of

the disease, and 8 in 10 PCPs (81%) reporting that their

patients believe MCI is a part of normal aging.

Patient Concern for MCI and MCI Due to

Alzheimer’s Disease

Even though awareness and understanding of MCI and

MCI due to Alzheimer’s disease among Americans is low,

they express concern when prompted with a description of

both conditions.

Nearly one-half of Americans (47%) say they worry about

developing MCI in the future, with 13% indicating they

worry “a lot.” Asian (54%) and Hispanic (52%) Americans are

more likely to worry about developing MCI compared with

Native (47%), White (45%) and Black Americans (44%).

86 Alzheimer’s Association. 2022 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2022;18.

Overall, 42% of Americans say they worry about developing

MCI due to Alzheimer’s disease, with 14% of individuals

indicating they worry “a lot.” Asian (50%), Hispanic (49%),

and Black (47%) Americans are most likely to worry about

developing MCI due to Alzheimer’s disease, followed by

Native (41%) and White Americans (39%).

Despite these concerns, a majority of Americans (85%) say

they would want to know if they had Alzheimer’s disease early,

including during the MCI stage (54%) and mild Alzheimer’s

disease stage (31%) (Figure 19).

Reasons Americans cited most often for wanting to

know early if they have Alzheimer’s disease include

planning for the future (70%), allowing for earlier treatment

of symptoms (70%), taking steps to preserve existing

cognitive function (67%) and being able to understand what

is happening (66%) (Figure 20).

Overall, 43% of Americans cited clinical trial participation

as a reason for early diagnosis of Alzheimer’s disease

(Figure 20). White Americans (50%) were twice as likely as

Hispanic Americans (25%) to cite clinical trial participation

as a reason for early diagnosis, followed by Asian (40%),

Native (35%) and Black Americans (32%).

Hispanic (79%) and Black (80%) Americans are least likely to

want to know if they had Alzheimer’s during an earlier

stage (MCI or mild Alzheimer’s dementia), especially when

compared with White Americans (88%). Among Asian and

Native Americans, 84% say they would want to know if they

had the disease during an earlier stage.

Only 15% of Americans say they would want to know if

they had Alzheimer’s disease during later stages of the

disease (moderate/severe stage) or not at all (Figure 19).

The most cited reasons for not wanting to know include: a

diagnosis would be difficult to accept (34%), treatment

options are limited (31%), there is no cure so it doesn’t

matter (28%) and people might treat me differently (26%)

(Figure 21). Difficulty in accepting an Alzheimer’s disease

diagnosis was the most often cited reason across all racial

and ethnic groups.

figure

Familiarity and Perceptions of MCI Among U.S. Adults

Percentage of U.S. Adults Who Say MCI Sounds Likes Normal Aging

Percentage

Agree

strongly

50%

Agree

somewhat

30%

Disagree

somewhat

15%

Disagree

strongly

Familiarity of MCI Among U.S. Adults

Percentage

Know

a lot

Know

something

16%

Heard of, but

know little

39%

43%

Never

heard of

82% not familiar18% familiar

figure

Percentage

Stage at Which U.S. Adults Would Want to Know

If They Have Alzheimer’s Disease

54%

MCI

Never

Mild

Alzheimer's

Disease

31%

Moderate

Alzheimer's

Disease

Severe

Alzheimer's

Disease

It would allow

me and my

family to plan

for the future

70%

It would allow for

earlier treatment

of symptoms

70%

I could begin

health measures to

preserve existing

function

67%

It would help me

understand what

is happening

66%

I could begin

treatment with

new approved

medications

61%

I could address

safety issues

ahead of time

55%

It would encourage

me and my family to

seek education and

support resources

54%

It would give me

more time to

assemble medical and

caregiving teams

52%

It would help

rule out reversible

causes

48%

It would allow

for better

management of

other conditions

47%

It would allow

me to participate

in clinical trials

43%

Other reasons

Reasons for Seeking an Early-Stage Alzheimer’s Diagnosis Among U.S. Adults

figure

Percentage

A diagnosis of

Alzheimer’s disease

would be diﬃcult for

me to accept

34%

Treatment options

for Alzheimer’s

disease are limited

31%

There is no cure

for Alzheimer’s

disease, so it

doesn’t matter

28%

People would treat

me diﬀerently if

I were diagnosed

26%

I can manage any

problems I would have

through lifestyle, diet

or other means

19%

A diagnosis of

Alzheimer’s disease

might be inaccurate

17%

Diagnostic tests for

Alzheimer’s disease

may not be covered

by insurance

13%

Diagnosing

Alzheimer’s disease

would involve a lot

of tests

10%

Reasons for Not Seeking an Early-Stage Alzheimer’s Diagnosis Among U.S. Adults

figure

Percentage

88 Alzheimer’s Association. 2022 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2022;18.

Patient Reticence in Addressing Concerns About MCI

and MCI Due to Alzheimer’s

Most Americans (70%) say they would talk to someone if

they started noticing symptoms of MCI but only 4 in 10

Americans (40%) report that they would talk to their doctor

right away. More than half of Americans (57%) say they

would wait until they had symptoms for a while (33%) or

their symptoms worsened (12%), or wait until others

expressed concern (12%). Just 2% of Americans say they

would never talk to their doctor about MCI symptoms.

The Alzheimer’s Association survey revealed that the

decision to see a doctor when experiencing MCI symptoms

is not a foregone conclusion for many individuals. In fact,

almost 8 in 10 Americans (78%) say they would have

concerns about seeing a doctor in the wake of MCI

symptoms. Reasons for not seeing a doctor include

concerns about receiving an incorrect diagnosis (28%),

learning of a serious health problem (27%), receiving an

unnecessary treatment (26%) and believing symptoms

might go away (23%) (Figure 22).

Receiving an incorrect diagnosis was the top concern for

not seeing a doctor right away for MCI symptoms among

Asian (38%), Black (31%) and White Americans (27%). The

top reason cited by Hispanic (27%) and Native Americans

(31%) was learning they might have a serious problem.

Native Americans (16%) were three times as likely as White

Americans (5%) to cite having good access to health care as

a concern for seeing a doctor. Hispanic (12%), Asian (11%)

and Black Americans (10%) were twice as likely to cite this

concern as White Americans. Surveys reported by the

Alzheimer’s Association in 2021 found that affordability

of care, lack of insurance coverage and lack of access to

community health care services were significant barriers

in accessing dementia care for Hispanic, Black, Asian

and Native Americans.

750

Despite their concerns and often with some delay, most

Americans see value in having MCI (73%) and MCI due to

Alzheimer’s disease diagnosed (70%). Still, more than 1 in 4

Americans (27%) report seeing little value in having MCI

formally diagnosed, while nearly 1 in 3 Americans (30%) say

there is little value in having MCI due to Alzheimer’s disease

diagnosed. Hispanic, Black and Asian Americans expressed

this view most often for both diagnoses (Figure 23).

Primary Care Physicians: On the Front Lines of Caring

for Individuals With MCI

PCPs play an integral role in providing dementia care (see

Workforce section, page 52). According to the Alzheimer's

Association survey, 3 in 4 PCPs (75%) say they are on the

front lines of providing care to patients with MCI, with

two-thirds (62%) of PCPs reporting they receive questions

I might get

an incorrect

diagnosis

28%

I might end up

learning I have a

serious problem

27%

I might be given

unnecessary

treatment

26%

Symptoms might

go away so I would

want to give it time

23%

There may

not be good

diagnostic tests

for MCI

19%

I would not want

to think about it

and worry

17%

Symptoms of

MCI seem minor

and do not aﬀect

daily living

16%

If there is no

cure, it’s not worth

bothering

12%

I do not have

good access to

health care

Other

concerns

I would have

no concerns

22%

Concerns About Seeing a Doctor for MCI Symptoms Among U.S. Adults

figure

Percentage

Percentage of U.S. Adults Who Question Beneﬁt of Diagnosing

MCI Due to Alzheimer's Disease, by Race or Ethnicity

21%

White

Americans

Hispanic

Americans

32%

22%

Black

Americans

13%

34%

Asian

Americans

Native

Americans

24%

Agree strongly Agree somewhat

figure

Percentage of U.S. Adults Who Question Beneﬁt of

Diagnosing MCI, by Race or Ethnicity

Percentage of U.S. Adults Who Question the Beneﬁt of an MCI and MCI Due to Alzheimer’s Disease Diagnosis

Percentage

17%

Black

Americans

15%

29%

Hispanic

Americans

20%

White

Americans

20%

Native

Americans

31%

Asian

Americans

Agree strongly Agree somewhat

at least weekly from their patients about symptoms

consistent with MCI. These findings parallel those from

a 2020 Alzheimer's Association report in which 82% of

PCPs said they were on the front lines providing

dementia care.

589

Almost all PCPs (93%) surveyed are familiar with MCI and

a majority of PCPs (65%) say they are “always comfortable”

or “usually comfortable” answering patient questions about

MCI. Nearly as many PCPs (85%) are familiar with MCI due

to Alzheimer’s disease, and the majority of them (60%)

are comfortable discussing with their patients how MCI

can be related to Alzheimer’s disease.

More than 8 in 10 PCPs (82%) report having sought

information on MCI due to Alzheimer’s disease during the

past year. Nearly 4 in 10 (39%) have done so during the

past month, with almost 1 in 10 (9%) reporting they have

done so within the past week.

Patients view PCPs as a trusted source for information

on MCI, with 55% of Americans reporting they would

discuss MCI symptoms with their PCP before others,

including their spouse (42%) or physician specialists (29%).

Primary Care Physicians: Diagnosis of MCI and MCI Due

to Alzheimer’s disease

Almost all PCPs surveyed say it is important to diagnose

MCI (98%) and MCI due to Alzheimer’s disease (90%). Nearly

two-thirds of PCPs (65%) say they are comfortable

diagnosing MCI, while less than half (49%) report being

comfortable diagnosing MCI due to Alzheimer’s disease

(Table 23).

Challenges cited most frequently when making an MCI

diagnosis include difficulty differentiating MCI from

normal aging (72%) and difficulty interpreting patient

reports of daily functioning (51%) (Figure 24, page 91).

Top challenges in making an MCI due to Alzheimer’s

disease diagnosis include lack of specialists/facilities to

perform diagnostic testing (51%), patient reluctance to

pursue follow-up testing (49%) and PCP reluctance to

diagnose a condition that has limited treatment options

(47%) (Figure 25, page 91).

The Alzheimer’s Association survey found that fewer

than 1 in 10 PCPs (7%) are “very familiar” with current

biomarker tests that aid in detecting Alzheimer’s disease.

This finding could partially explain why it is difficult for

PCPs to diagnose MCI due to Alzheimer’s disease.

90 Alzheimer’s Association. 2022 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2022;18.

One-third of PCPs (33%) report being “somewhat

familiar” with biomarker testing. Not surprisingly, fewer

than 1 in 5 patients (18%) are referred for biomarker

testing when MCI is detected (Figure 26, page 92).

The Alzheimer’s Association survey found that nearly

all PCPs (96%) say it is important to assess patients

60 and older for cognitive impairment, but they report

conducting assessments for just half their patients (48%).

This finding is consistent with previous Alzheimer’s

Association reports published in 2019 and 2020

indicating PCPs provide cognitive assessments for less

than half their patients age 65 and older.

247,589

The current challenges PCPs face when diagnosing MCI

and MCI due to Alzheimer’s disease are underscored by

the finding that 9 in 10 PCPs (90%) say “it is hard to know

where MCI ends and dementia begins.”

Primary Care Physicians: Management and Treatment

of MCI

The vast majority of PCPs (86%) say early intervention

can slow progression of cognitive decline. When MCI is

detected in patients, PCPs most often recommend

lifestyle changes (73%), perform laboratory testing for

reversible causes of MCI (70%) and/or refer patients to

a specialist (53%) (Figure 26, page 92).

As indicated in Figure 26 (page 92), PCPs infrequently

recommend testing for Alzheimer’s disease biomarkers

(18%). In addition, fewer than 1 in 4 PCPs (20%) report

being familiar with clinical trials in MCI due to Alzheimer’s

disease and recommend trial participation when MCI is

detected just 8% of the time. PCP referral of patients to

clinical trials is much lower than the 43% of Americans

who cite the potential for clinical trial participation as a

reason for early diagnosis (see Figure 20, page 87).

Finally, as referenced earlier in this report, there are

more than 100 disease-modifying treatments for

Alzheimer’s disease, including those aimed at addressing

MCI due to Alzheimer’s disease, under investigation in

clinical trials and at various stages of regulatory

approval.

748-749

Yet fewer than 1 in 4 PCPs (23%) say they

are familiar with these emerging treatments to address

MCI due to Alzheimer’s.

Optimism for Future Treatments

Despite the devastating toll Alzheimer's disease continues

to have on individuals and families across the country, both

patients and PCPs express optimism that new treatments

to combat Alzheimer’s disease are on the horizon.

More than 7 in 10 Americans (73%) expect new treatments

to delay the progression of Alzheimer’s disease to be

available within the next decade (Table 24). Six in 10

Americans (60%) anticipate new treatments to stop the

progression of Alzheimer’s disease. More than one-half of

all Americans (53%) believe there will be new treatments to

prevent Alzheimer’s disease.

PCPs also expressed optimism for future Alzheimer’s

disease treatments (Table 24). More than 4 in 5 PCPs (82%)

expect there will be new treatments to delay the

progression of Alzheimer’s disease during the next decade.

More than half of PCPs (54%) anticipate there will be

treatments to stop Alzheimer’s disease progression, and

more than 4 in 10 (42%) anticipate new treatments to

prevent Alzheimer’s disease.

A Path Forward: Increasing Awareness

and Diagnosis of MCI and MCI Due to

Alzheimer’s Disease

Taken together, the Alzheimer’s Association surveys

provide important insights and perspectives from the

American public and primary care physicians on the current

state of understanding, awareness, diagnosis, and

management of MCI and MCI due to Alzheimer’s disease.

The findings indicate improvements are needed to increase

public awareness of MCI, including MCI due to Alzheimer’s,

and that enhanced support is needed for primary care

physicians on the front lines tasked with diagnosis,

Primary Care Physicians’ Perceptions on Diagnosing

MCI and MCI Due to Alzheimer’s Disease

PCP Perceptions

table

MCI

MCI Due to

Alzheimer's

Disease

It is important to diagnose 98% 90%

It is difficult to diagnose 57% 77%

PCP is comfortable diagnosing 65% 49%

U.S. Adults

Primary

Care

Physicians

Delays progression of

Alzheimer's Disease

73% 82%

Stops progression of

Alzheimer's Disease

60% 54%

Prevents Alzheimer's Disease 53% 42%

U.S. Adults and Primary Care Physicians’ Expectations

for New Alzheimer's Disease Treatments During the

Next Decade

Treatment type that...

table

Lack of specialists

and facilities able

to perform

diagnostic tests

51%

Patient reluctance

to follow up with

extensive testing

49%

Reluctance to

diagnose a condition

that has limited

treatment options

47%

There are few

services available

for patients who

are diagnosed

43%

Reluctance to

diagnose a

condition that may

be stigmatizing

41%

Diagnostic tests

have high rates of

false positives and

false negatives

35%

Disclosing a

diagnosis to patients

is diﬃcult or

time-consuming

34%

Lack of ﬁnancial

reimbursement

for time spent

discussing results

31%

Follow-up care for

diagnosed patients

may strain primary

care resources

31%

Lack of ﬁnancial

reimbursement

for diagnostic

testing

27%

Other

challenges

There are no

challenges

Primary Care Physician Challenges in Diagnosing MCI Due to Alzheimer’s Disease

figure

Percentage

Diﬃculty in

diﬀerentiating

MCI from

normal aging

72%

Diﬃculty in

interpreting patient

reports of daily

functioning

51%

Lack of suﬃcient

expertise in the

areas of cognitive

function

47%

Lack of suﬃcient

expertise in

performing

cognitive

assessments

47%

Diﬃculty in

interpreting

complex patient

medical histories

46%

Dissociation

of symptoms

from diﬃculties

in daily life

44%

Lack of normative

data, especially

in diverse

populations

44%

Patient lack

of concern

regarding cognitive

symptoms

35%

Lack of urgency

with high rates of

benign prognosis

30%

High rates of

reversion to

normal cognitive

functioning

16%

Other

challenges

There are no

challenges

Primary Care Physician Challenges in Diagnosing MCI

figure

Percentage

92 Alzheimer’s Association. 2022 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2022;18.

management and treatment of MCI, including MCI due to

Alzheimer’s disease, and other dementias. The Alzheimer’s

Association proposes four broad efforts to improve the

current situation:

• Promote greater public awareness by leveraging

awareness campaigns and community-based disease

education programs.

• Improve ease of use and uptake of cognitive

assessments in the primary care setting.

• Expand primary care physicians’ ability to diagnose

cognitive impairment, including MCI and MCI due to

Alzheimer’s disease.

• Bolster public and primary care physician awareness of

and patient participation in Alzheimer’s disease-related

clinical trials and research.

Leveraging Public Awareness Campaigns and

Community-Based Disease Education Programs

Findings from the Alzheimer’s Association surveys reveal

that Americans have a concerning lack of awareness of

MCI, MCI due to Alzheimer’s disease, and the distinction

between these conditions and normal aging. When

Americans do have concerns about their cognitive

functioning, they are often slow to act — potentially

delaying or impeding diagnosis and potential intervention

for MCI or MCI due to Alzheimer’s disease.

Public awareness campaigns and community-based

disease education programs offer two important avenues

for building public awareness nationally and locally.

751

Given low consumer awareness of MCI, core messaging

to public audiences within these efforts should be

broad, encouraging more Americans to be proactive in

recognizing early symptoms of cognitive impairment and

addressing concerns with their physician.

These efforts should engage not only individuals at risk

for cognitive decline, but family members as well. Close

family members are typically the first to notice memory

concerns or cognitive problems, yet many are reluctant

to initiate a conversation with the affected individual or

their physician. Touting the value and benefits of early

diagnosis in messaging can help overcome reticence and

rectify concerns identified in the current Alzheimer’s

Association survey.

Since 2019, the Alzheimer’s Association has partnered with

the Ad Council on a national communications campaign

aimed at encouraging families to discuss cognitive concerns

with each other and their doctor sooner to enable early

diagnosis of Alzheimer’s disease and related dementias.

The campaign features real stories of people who noticed

cognitive changes in a close family member and took the

first, difficult step to initiate a conversation about those

changes. The campaign offers tools and resources to help

families recognize early warning signs of Alzheimer’s

disease, provides tips for facilitating conversations about

cognition, and explains benefits of early detection and

diagnosis.

752

The campaign resources also include a

collection of disease-related information and a discussion

guide for use with doctors and health care professionals.

753

Recommend

lifestyle

changes

73%

Perform

lab testing

for reversible

causes

70%

Refer

the patient to

a specialist

53%

Prescribe

medications to

treat noncognitive

symptoms

27%

Prescribe

medications to

treat cognitive

symptoms

27%

Recommend

testing for

Alzheimer's

biomarkers

18%

Recommend

participation in

clinical trials

Steps Recommended by Primary Care Physicians When MCI Is Detected

figure

Percentage

Community-based disease education programs provide

another important avenue to raise awareness about MCI,

including MCI due to Alzheimer’s, with the advantage that

they can be tailored to reach diverse communities. As

indicated in the current Alzheimer’s Association survey,

there are differences in how racial and ethnic groups view

and respond to concerns about cognitive impairment.

Creating disease-related materials and messaging that

resonates with diverse communities is essential.

Improving Cognitive Assessment in Primary

Care Practice

Studies indicate that detection and diagnosis of cognitive

impairment or dementia can be increased two- to three-

fold with routine use of brief cognitive assessments.

586

Yet findings from the current Alzheimer’s Association

survey indicate that primary care physicians are evaluating

just under half of their patients for cognitive impairment.

These findings parallel those from Alzheimer’s Association

surveys of primary care physicians published in 2019

and 2020.

247,589

In recent years, the Centers for Medicare and Medicaid

Services (CMS) has attempted to increase utilization of

cognitive assessments in routine care by making it a

requirement of the Medicare Annual Wellness Visit (AWV),

reimbursing the cognitive assessment and care plan

as a separate visit and at a higher dollar amount, and

making the option of reimbursable telehealth evaluation

permanent.

754

Three other approaches arising from this

year’s Alzheimer’s Association survey findings that could

complement these efforts to increase uptake of cognitive

assessments in primary care are:

1. Implementing new assessment approaches that do

not detract from the physician portion of a visit.

2. Supporting physicians with resources to equip them

to more confidently perform and interpret cognitive

assessments.

3. Developing and disseminating culturally appropriate

assessment tools for use in diverse populations.

Rethinking Assessment Approaches

Currently, many physicians administer cognitive

assessments themselves — asking patients questions,

recording the answers, then interpreting the results

and formulating next steps. This takes time, and not

only do physicians have limited time with patients,

but the cognitive assessment may also not be the

priority during the visit. Time is a barrier to uptake

without an easy solution. Using computerized or digital

screening assessments outside of exam room time is

one approach to overcome time constraints, as is using

remote assessment through telehealth technology.

638

Other approaches include limiting the time it takes to

conduct an assessment and involving other members

of the care team to administer cognitive screenings

(see Workforce section, page 52).

586,755

Resources

Limited expertise is a frequently cited barrier to

performing cognitive assessments in the literature

and was raised by PCPs in the current Alzheimer’s

Association survey, with PCPs citing lack of expertise in

areas of cognitive function (47%) and lack of sufficient

expertise in performing cognitive assessments (47%) as

significant challenges (Figure 24, page 91).

589,755

Increasing PCP awareness of self-directed training

resources is an important first step to help them gain

confidence and comfort using cognitive assessments

more regularly. Resources and information on

performing cognitive assessments are available to

primary care practices from numerous government

and professional organizations, including:

• Centers for Medicare and Medicaid Services

• The National Institute on Aging

• The Alzheimer’s Association Cognitive Assessment

Toolkit

• The Alzheimer’s Association Medicare Annual Wellness

Visit Algorithm for Assessment of Cognition

• The Gerontological Society of America Kickstart,

Assess, Evaluate, Refer (KAER) Toolkit

• The American Academy of Family Physicians Cognitive

Care Kit

• Minnesota’s Act on Alzheimer’s® Provider Practice Tools

The Alzheimer’s Association and others, including a

working group of international experts on MCI and

Alzheimer’s disease, have published recommendations

and descriptions of operationalizing cognitive

assessments, including the AWV, in primary care

practice to guide this process.

586,755-757

Culturally Appropriate Assessment

Clinicians need more cognitive assessment tools for

diverse and underserved populations. Studies show

sensitivity to differences in age, literacy levels and

cultural variation are key limitations of many cognitive

tests in use today.

755,758-761

Evidence suggests that age, number of chronic

conditions and socioeconomic status may influence

screening rates with cognitive assessments, and that

race, ethnicity, educational level and language

barriers may negatively impact the utility of cognitive

assessments in discriminating between normal aging

and MCI or dementia.

755,758-759

Adapting existing

cognitive assessments or developing new cognitive

assessments for an increasingly diverse aging population

is an avenue to explore to improve early diagnosis

rates among groups that are disproportionately

affected by Alzheimer’s disease and related dementias

(see Prevalence section, page 18).

762

An example of this

is a best practices guide developed by CMS to help

94 Alzheimer’s Association. 2022 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2022;18.

physicians adapt cognitive assessments based on

cultural considerations for screening Native

Americans.

763

Having cognitive assessments that are

designed specifically for historically underrepresented

groups may also improve uptake in primary care

practices, as these assessments could generate the

normative data in diverse populations that physicians

surveyed as part of this year’s Special Report say they

are lacking to diagnose MCI.

755

Expand Primary Care Physicians’ Ability to

Diagnose Cognitive Impairment Early

Ensuring that primary care physicians and care teams are

equipped to diagnose and manage MCI and MCI due to

Alzheimer’s disease now and in a growing aging population

is imperative, especially in light of a worsening shortage

of other specialists, such as geriatricians (see Workforce

section). Possible future directions informed specifically by

the Alzheimer’s Association survey findings are described

below. They include adopting new diagnostic tools as

they become available, continuing to enhance primary

care capacity for dementia care, and ongoing efforts

to deliver more culturally-competent care (for additional

recommendations, see the Workforce section, page 52).

Simplify Adoption of Future Diagnostic Tools

Low diagnosis rates for MCI due to Alzheimer’s disease

can be partially explained by the challenges primary care

physicians report in administering diagnostic tests. The

Alzheimer’s Association survey found that physicians

report barriers in referring their patients to specialists for

diagnostic tests, must overcome patient reluctance to

pursue further testing and believe existing diagnostic tests

can be inaccurate (Figure 25, page 91). Some of these

barriers could be overcome with research advancements

that bring new diagnostic tools, such as blood-based

biomarker tests, to the primary care setting. Although not

yet widely available in clinical practice, eventually blood-

based biomarker tests could be ordered through the

primary care practice and offer another way to help detect

disease early so that a patient could be referred to a

specialist or monitored more closely for cognitive decline

by their primary care physician.

As reported in the 2017 Special Report, “Alzheimer's

Disease: The Next Frontier,” “Alzheimer’s disease exists

as a continuum beginning with a phase that may only be

detectable through biomarkers, moving through the

dementia stage.”

764

Research funded by the Alzheimer’s

Association and other institutions is underway to discover

new biomarkers and evaluate this approach.

747,765-768

Advances in biomarker science will also help PCPs perform

a differential diagnosis to rule out modifiable causes of

symptoms, and ascertain when it may be appropriate to

refer patients to clinical trials of new treatment options.

The Alzheimer’s Association survey found that very few

PCPs are familiar with current biomarker tests that

aid in detecting Alzheimer’s disease. Therefore, when

new blood-based biomarker tests are ready for adoption

in routine primary care practice, it will be important to

educate physicians about appropriate use. Education can

be accomplished with implementation toolkits or stepwise

diagnostic algorithms that clearly explain which patients

to test and when, how biomarker tests complement other

tools, such as cognitive assessments and clinical exams,

and how to put the results into context with other clinical

findings to create a care plan.

747,755

Continue to Enhance Primary Care Capacity for

Dementia Care

Although less frequently cited than other challenges in

this year’s Special Report, physicians did acknowledge that

they have difficulty diagnosing MCI due to Alzheimer’s

disease because there are few services for patients who

are diagnosed, and they believe that follow-up care may

strain primary care resources (Figure 25, page 91).

The Alzheimer’s Association is partnering with primary care

clinicians and practices to increase equitable access to

timely detection, accurate diagnosis, and quality, person-

centered care. In 2018, the Association launched a Project

ECHO® — a highly successful telementoring program —

that has connected more than 50 primary care practices

with dementia care experts to enhance dementia care in

underserved areas. University of Washington and West

Virginia University have also launched Project Dementia

and Memory Health to support primary care practices.

769-770

In addition to work through Project ECHO, the

Alzheimer’s Association is partnering directly with more

than 300 health systems in the United States, from

community health centers to large integrated delivery

networks, and offers guidance and resources for them at:

alz.org/professionals/health-systems-clinicians.

Another approach to enhancing primary care capacity for

dementia care is through collaborative and coordinated

care programs. The UCLA Alzheimer’s and Dementia Care

Program, for example, uses nurse practitioners and

dementia care specialists to manage the care of people

living with dementia. Since launching in 2011, the program

has expanded to 18 sites across the country, reducing

emergency department visits, days spent in the hospital,

admissions to nursing homes for long-term care and

overall Medicare costs.

771

Dedicate Sustained Eﬀort to Improve Diversity and

Inclusion in Primary Care

This year’s Special Report uncovered some distinctions

between racial and ethnic groups in understanding,

diagnosis and management of MCI and MCI due to

Alzheimer’s disease. As we move forward, it is critical

to recognize racial and cultural differences in how

underserved and disproportionately affected populations

respond to health concerns and work to eliminate

barriers that may delay or prevent timely access to care

and treatment.

Recommendations outlined in the Alzheimer’s Association

2021 Alzheimer’s Disease Facts and Figures Special Report

still hold true this year. The Alzheimer’s Association survey

reported in 2021 found that individuals want health care

providers who reflect their racial and ethnic backgrounds.

750

A diverse, representative, culturally-competent primary

care workforce could strengthen trust with underserved

populations, helping them to overcome some of their

reticence to seek evaluation and diagnosis of cognitive

impairment, potentially reducing future disparities in

dementia care.

750

Bolstering Public Awareness and Physician

and Public Participation in Clinical Trials

Low public awareness, difficulty recruiting and retaining

clinical trial participants, and a lack of diversity in clinical

trials are ongoing challenges that impede progress toward

advancing new disease-related treatments and therapies.

Registries established at the local and national levels aim

to help in the recruitment process by offering people the

chance to be matched to current and future Alzheimer’s

disease clinical trials.

772

Examples include the Alzheimer’s

Prevention Registry, which is trying to enlist large

numbers of people for future disease prevention trials,

The Alzheimer’s Association’s TrialMatch, the NIH-funded

ResearchMatch and the Brain Health Registry. Rolling

information about registries into public awareness

campaigns and community outreach efforts could be

a step towards educating the public.

Grassroots community outreach has also shown some

success in recruiting Alzheimer’s disease clinical trial

participants from the community-at-large, and could be

included as part of the public awareness campaigns

described previously.

772-773

Online patient communities

and support groups can also serve as an avenue to

awareness and recruitment.

773

The 2021 Alzheimer’s Association Special report found

that a majority of Americans feel that medical research

is biased against Asian, Black, Hispanic and Native

Americans, which leads these underrepresented groups

to be less interested in participating in clinical trials.

745

As outlined in the same report, building relationships with

community-based organizations and trusted leaders from

underrepresented groups can help facilitate education and

the delivery of dementia-related information and resources

to these communities, including the importance of these

groups’ participation in clinical trials and disease research.

774

For PCPs, awareness may not be the only reason they are

not recommending and referring patients for participation

in clinical trials and disease research. Some studies have

found that not all physicians see value in clinical trials.

772-773

Others are hesitant to refer due to potential risks to their

patients, concerns from their patients and logistical

obstacles that prevent easy referral if the physician is not

affiliated with an academic research institution.

772-773

The Alzheimer’s Association survey of PCPs published

in 2019 found that fewer than 4 in 10 believe participation

in clinical trials or other research is an important benefit

of early detection of Alzheimer’s disease.

247

This finding

appears to still hold true today, as PCPs recommend trial

participation just 8% of the time when MCI is detected

(Figure 26, page 92). Education that reinforces the value

and benefits of clinical trial participation is warranted.

Finally, many clinical trials today seek to include patients

with preclinical Alzheimer’s disease or MCI due Alzheimer’s

disease, highlighting a heightened need for PCP referral.

Findings from the current survey indicate many PCPs do

not feel they have the diagnostic tools to accurately

confirm MCI due to Alzheimer’s disease without referral to

a specialist and follow-up testing. As outlined previously,

increasing use of cognitive assessments and the potential

availability of blood-based biomarkers to aid in detection

and diagnosis of MCI due to Alzheimer’s disease may help

overcome this particular challenge.

Conclusion

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

primary care physicians underscore the need for robust

efforts to raise the public’s awareness of MCI, including

MCI due to Alzheimer’s disease, while also better preparing

primary care physicians to identify, diagnose and manage

their patients’ cognitive impairment at its earliest stages.

As we wait for widespread use of biomarkers to be common

practice in the clinical setting, patients and physicians share

responsibility in recognizing and addressing symptoms of

MCI sooner and more proactively.

Early intervention offers the best opportunity for

management and treatment, allowing individuals with MCI

or MCI due to Alzheimer’s disease more time to plan for the

future, adopt lifestyle changes that may help slow disease

progression, participate in clinical trials and to live more

fully, with a higher quality of life, for as long as possible.

96 Alzheimer’s Association. 2022 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2022;18.

A1. Activities of daily living: Everyday activities a person typically

performs without assistance, including getting into and out

of a bed or chair, bathing, dressing, grooming, eating and using

the toilet.

A2. Estimated prevalence (number and proportion) of Americans age

65 and older with Alzheimer’s dementia for 2022: The estimated

6.5 million persons ages 65 years and older with Alzheimer’s

dementia and the estimated numbers of persons with

Alzheimer’s in each age group were reported from a study that

used data from the Chicago Health and Aging Project (CHAP) in

combination with population projections from the U.S. Census.

224

The number, 6.5 million, is higher than estimated from previous

study that also combined CHAP and U.S. Census data. This is

because the more recent study used updated Census projections

and incorporated information from Hispanic/Latino American

persons. The proportion of the population with Alzheimer’s

dementia (among all persons age 65 and older and by age group)

is calculated using as the numerators the numbers of persons

with Alzheimer’s dementia, as reported by the recent study in

CHAP.

224

The denominators were the U.S. Census population

projections for the specific age groups of interest.

A3. 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).

224,228

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.

227

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.

A4. 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.

259

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 2022.

A5. 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.

263

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.

A6. Projected number of people with Alzheimer’s dementia,

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

224

Other

projections are somewhat lower (see, for example, Brookmeyer

et al.

775

) 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.

A7. 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.

A8. 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 2020, 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.” In the 2019 and 2020 BRFSS, an

additional follow-up question was included, asking if the

caregiving recipient also had dementia in addition to their main

condition. Prior to 2019, the survey did not include caregivers of

recipients for whom dementia was not their main condition, so

these numbers were imputed using data collected in 2019 by the

National Alliance for Caregiving (NAC)/AARP survey. 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 six states without

2015-2020 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 2021,

using U.S. Census Bureau data available at: https://www.census.

gov/programs-surveys/popest/data/tables.html. This resulted in

a total of 11.343 million Alzheimer’s and dementia caregivers

across all 50 states and the District of Columbia.

A9. 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.

Appendices

End Notes

Appendices

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.

A10. 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,

395

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 16.023 billion hours.

A11. Value of unpaid caregiving: For each state, the hourly value of

care was determined as the average of the state minimum hourly

wage

776

and the most recently available state median hourly

cost of a home health aide. (For Nevada, the minimum wage used

was the average of the minimum wage for those who are not

provided health insurance and the minimum wage for those who

are provided health insurance.)

686

The average for each state was

then multiplied by the total number of hours of unpaid care in

that state

A10

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 $271.598 billion for dementia caregiving in

the United States in 2021.

A12. 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 2018 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

224

and included in this report

(6.5 million in 2022), 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.

Because state-specific prevalence estimates do not exist for

2022, the state-specific Medicaid costs included in Facts and

Figures are based on the 2020 prevalence estimates reported

here.

A13. All cost estimates were inflated to year 2021 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.

A14. Average annual per-person payments for health care and

long-term care services for Medicare beneficiaries age 65

and older with and without Alzheimer’s or other dementias:

Payments are unadjusted, and therefore, do not account for

differences in patient characteristics, such as age or sex.

A15. Medicare Current Beneficiary Survey Report: These data come

from an analysis of findings from the 2018 Medicare Current

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

Alzheimer’s Association by Health Care Cost Institute.

260

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 setting, 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 2022 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 setting 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

2018 and reported in 2021 dollars.

A16. Differences in Estimated costs reported by Hurd and colleagues:

Hurd and colleagues

644

estimated per-person costs using

data from participants in ADAMS, a cohort in which all

individuals underwent diagnostic assessments for dementia.

2022 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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The Alzheimer’s Association acknowledges the

contributions of Joseph Gaugler, Ph.D., Bryan

James, Ph.D., Tricia Johnson, Ph.D., Jessica

Reimer, Ph.D., Michele Solis, Ph.D., and Jennifer

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

2022 Alzheimer’s Disease Facts and Figures.

Additional contributors include Rachel F.

Buckley, Ph.D., and Timothy J. Hohman, Ph.D.

Alzheimer’s Association

225 N. Michigan Ave., Fl. 17

Chicago, IL 60601-7633

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unaﬃliated organizations and individuals. Such distribution

does not constitute an endorsement of these parties or

their activities by the Alzheimer’s Association.

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