2019
ALZHEIMER’SDISEASEFACTS ANDFIGURES
Includes a Special
Report on Alzheimer’s
Detection in thePrimary Care Setting:Connecting Patientsand PhysiciansAbout this report2019 Alzheimer’s Disease Facts and Figures is a statisticalresource for U.S. data related to Alzheimer’s disease,the most common cause of dementia. Background andcontext for interpretation of the data are contained in theoverview. Additional sections address prevalence, mortality
and morbidity, caregiving and use and costs of health care,long-term care and hospice. A Special Report discusses
Alzheimer's detection in the primary care setting.

dAlzheimer’s
Alzheimer’s
Association.
Association.
2019 Alzheimer’s
2019 Alzheimer’s
DiseaseDisease
Facts and
Facts
Figures.
and Figures.
Alzheimers
Alzheimers
DementDement
2019;15(3):321-87.
2019;15(3):321-87.

Specific information in this year’s
Alzheimer’s Disease Facts and Figures includes:• Brain changes that occur with Alzheimer’s disease(page 5).
• Risk factors for Alzheimer’s dementia (page 12).
• Number of Americans with Alzheimer’s dementia
nationally (page 17) and for each state (page 19).
• Lifetime risk for developing Alzheimer’s dementia(page 19).
• Proportion of women and men with Alzheimer’s andother dementias (page 19).
• Number of deaths due to Alzheimer’s diseasenationally (page 25) and for each state (page 27), anddeath rates by age (page 28).
• The impact of caregiving on caregivers (page 34).
• Number of family caregivers, hours of care provided,and economic value of unpaid care nationally (page 31)
and for each state (pages 36-37).
• National cost of care for individuals with Alzheimer’s orother dementias, including costs paid by Medicare andMedicaid and costs paid out of pocket (page 43).
• Medicare payments for people with dementia
compared with people without dementia (page 45).
• Attitudes toward cognitive assessment among seniors
and primary care physicians (page 64).
• Awareness and use of the Medicare Annual Wellness Visit
among seniors and primary care physicians (page 65).
The Appendices detail sources and methods used toderive statistics in this report.
When possible, specific information about Alzheimer’s
is provided; in other cases, the reference may be a moregeneral one of “Alzheimer’s or other dementias.”2019 Alzheimer’s Disease Facts and Figures

1

CONTE NT S

Overview
Brain Changes Associated with Alzheimer’s Disease5Stages of Alzheimer’s Disease5

Diagnosis of Dementia Due to Alzheimer’s Disease

8Treatment of Alzheimer’s Dementia

10

Living with Alzheimer’s Dementia

11

Uncommon Genetic Factors Associated with Alzheimer’s Disease

11

Risk Factors for Alzheimer’s Dementia

12

Looking to the Future

15

PrevalencePrevalence of Alzheimer’s and Other Dementias in the United States

17

Incidence of Alzheimer’s Dementia

18Lifetime Risk of Alzheimer’s Dementia

19

Estimates of the Number of People with Alzheimer’s Dementia by State

19

Differences Between Women and Men in the Prevalence and Risk of Alzheimer’s and Other Dementias

19

Racial and Ethnic Differences in the Prevalence of Alzheimer’s and Other Dementias

21

Trends in the Prevalence and Incidence of Alzheimer’s Dementia Over Time

23

Mortality and Morbidity

2

Deaths from Alzheimer’s Disease25

Public Health Impact of Deaths from Alzheimer’s Disease25State-by-State Deaths from Alzheimer’s Disease25

Alzheimer’s Disease Death Rates

26

Duration of Illness from Diagnosis to Death26

Burden of Alzheimer’s Disease28

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

Caregiving
Unpaid Caregivers

31

Who Are the Caregivers?

31

Caregiving and Women

31

Caregiving Tasks

32

Duration of Caregiving

33

Hours of Unpaid Care and Economic Value of Caregiving33

Impact of Alzheimer’s Caregiving

34

Interventions Designed to Assist Caregivers

39

Paid Caregivers

40

Direct-Care Workers for People with Alzheimer’s or Other Dementias

40

Shortage of Geriatric Health Care Professionals in the United States

40

Enhancing Health Care for Family Caregivers

41

Trends in Dementia Caregiving41

Use and Costs of Health Care, Long-Term Care and Hospice
Total Cost of Health Care and Long-Term Care43

Use and Costs of Health Care Services44

Use and Costs of Long-Term Care Services47

Use and Costs of Health Care and Long-Term Care Services by Race/Ethnicity

54

Avoidable Use of Health Care and Long-Term Care Services

55

Projections for the Future

56

Special Report — Alzheimer’s Detection in the Primary Care Setting: Connecting Patients and Physicians
Brief Cognitive Assessment in Primary Care

59

Medicare Annual Wellness Visit

59

The State of Brief Cognitive Assessment in Primary Care: Primary Care Physician and Consumer Surveys

60

Toward Better Cognitive Assessment: Challenges and Steps Forward

66

Conclusions68

Appendices
End Notes

69

References72

Contents

3

OVERVIEW

20

years or more before
symptoms appear,
the brain changes of
Alzheimer's may begin.

Alzheimer’s disease is a type of brain disease, just as
coronary artery disease is a type of heart disease. It isalso a degenerative disease, meaning that it becomesworse with time. Alzheimer’s disease is thought tobegin 20 years or more before symptoms arise,1-6 withsmall changes in the brain that are unnoticeable to theperson affected. Only after years of brain changes do
individuals experience noticeable symptoms, such as
memory loss and language problems. Symptoms occur
because nerve cells (neurons) in parts of the brain
involved in thinking, learning and memory (cognitive
function) have been damaged or destroyed. Individuals
typically live with Alzheimer’s symptoms for years.
Over time, symptoms tend to increase and startinterfering with individuals' ability to perform
everyday activities. At this point, the individual issaid to have dementia due to Alzheimer's disease,or Alzheimer's dementia.
As the disease progresses, neurons in other parts ofthe brain are damaged or destroyed. Activities thatused to be core to the individual’s identity, such asplanning family events or participating in sports, may
no longer be possible. Eventually, neurons in parts ofthe brain that enable a person to carry out basic bodilyfunctions, such as walking and swallowing, are affected.
People in the final stages of Alzheimer’s disease are
bed-bound and require around-the-clock care.
Alzheimer’s disease is ultimately fatal.

Brain Changes Associated with
Alzheimer’s Disease
A healthy adult brain has about 100 billion neurons,each with long, branching extensions. These extensions
enable individual neurons to form connections withother neurons. At such connections, called synapses,
information flows in tiny bursts of chemicals that are
released by one neuron and detected by a receiving
neuron. The brain contains about 100 trillion synapses.
They allow signals to travel rapidly through the brain’s
neuronal circuits, creating the cellular basis of memories,
thoughts, sensations, emotions, movements and skills.
The accumulation of the protein fragment beta-amyloid(called beta-amyloid plaques) outside neurons and theaccumulation of an abnormal form of the protein tau(called tau tangles) inside neurons are two of several
brain changes associated with Alzheimer’s. Beta-amyloid
plaques may contribute to cell death by interfering withneuron-to-neuron communication at synapses, while
tau tangles block the transport of nutrients and otheressential molecules inside neurons. As the amount ofbeta-amyloid increases, a tipping point is reached atwhich abnormal tau spreads throughout the brain.7

Other brain changes include inflammation and atrophy.
The presence of toxic beta-amyloid and tau proteins
activates immune system cells in the brain calledmicroglia. Microglia try to clear the toxic proteins aswell as widespread debris from dead and dying cells.
Chronic inflammation is believed to set in when the
microglia can't keep up with all that needs to be cleared.
Atrophy, or shrinkage, of the brain occurs because ofcell loss. Normal brain function is further compromisedby the decreased ability of the brain to metabolize
glucose, its main fuel.
A recent study5 of people with rare genetic mutations
that cause Alzheimer’s found that levels of beta-amyloid
in the brain were significantly increased starting
22 years before symptoms were expected to develop(individuals with these genetic mutations usuallydevelop symptoms at the same, or nearly the same, age
as their parent with Alzheimer’s). Glucose metabolism
began to decrease 18 years before expected symptom
onset, and brain atrophy began 13 years before
expected symptom onset.
When the early changes of Alzheimer’s occur, the brain
initially compensates for them, enabling individuals tocontinue to function normally. As the damage to nerve
cells continues, the brain can no longer compensate
for the changes, and individuals show subtle decline
in cognitive function. As time passes, plaques andtangles appear not only in areas of the brain involvedin cognitive function, but also in other areas of thebrain. 8 Later, damage to nerve cells is so significant that
individuals show obvious cognitive decline, including
symptoms such as memory loss or confusion as totime or place, as well as behavioral symptoms such as
depression, personality changes and loss of interestin activities they used to enjoy. Later still, basic bodilyfunctions such as swallowing are impaired.

Stages of Alzheimer’s Disease
Current research identifies three stages of Alzheimer’s
disease: preclinical Alzheimer’s disease, mild cognitive
impairment (MCI) due to Alzheimer’s disease, anddementia due to Alzheimer’s disease.9-12 In the last twostages, symptoms are present, but to varying degrees.
Preclinical Alzheimer’s Disease
In this stage, which is still under investigation, individuals
have measurable changes in the brain, cerebrospinal
fluid and blood that indicate the earliest signs of
Alzheimer’s disease (biomarkers), but they have notyet developed symptoms such as memory loss. While
research settings have the tools and expertise to
identify some of the early brain changes of Alzheimer’s,

Overview

5

additional research is needed to fine-tune the tools’
accuracy before they become available for widespreaduse in hospitals, doctor’s offices and other clinicalsettings. It’s important to note that not all individuals
with an Alzheimer’s biomarker go on to develop MCI ordementia,13-14 although many do.
MCI Due to Alzheimer’s Disease
People with MCI due to Alzheimer’s disease havebiomarker evidence of an Alzheimer’s-related brainchange (for example, elevated levels of beta-amyloid)and show cognitive decline greater than expected fortheir age, but this decline does not significantly interferewith everyday activities.15 In MCI, changes in thinking
abilities may be noticeable to family members andfriends, but may not be noticeable to others.
Approximately 15 percent to 20 percent of people age
65 or older have MCI15 from any cause. People with
MCI, especially MCI involving memory problems, aremore likely to develop Alzheimer’s or another dementia
than people without MCI.16-17 A recent analysis foundthat after 2 years’ follow-up, 15 percent of individuals
older than 65 with MCI had developed dementia.18 A
systematic review, in which data from multiple studies
are pooled and summarized, found that 32 percent of
individuals with MCI developed Alzheimer’s dementia
within 5 years’ follow-up.19 In addition, a meta-analysis,a method of analysis in which results of multiple studies
are examined, found that among individuals with MCI
who were tracked for 5 years or longer, 38 percent
developed dementia.17 Identifying which individuals with
MCI are more likely to develop Alzheimer’s or otherdementias is a major goal of current research.
Not all cases of MCI are due to Alzheimer’s. In someindividuals, MCI reverts to normal cognition or remains
stable. In other cases, such as when a medication
inadvertently causes cognitive changes, MCI ismistakenly diagnosed. Individuals also can be mistakenly
diagnosed with MCI or dementia due to Alzheimer’s
because the differences between typical age-related
cognitive changes and the cognitive changes of
Alzheimer’s can be subtle in the early stages. (see Table 1).
It is important that people experiencing cognitivechanges seek medical help to determine if the changes
are normal for one’s age, reversible or a symptom of
Alzheimer’s or another dementia.
In recent years, researchers have begun to recognize
the importance of older adults reporting their own
experiences of memory and thinking problems, without(or before) a formal examination by a doctor. This
personal experience of problems with cognitive function
is called subjective cognitive decline. One reason

6

researchers are interested in subjective cognitive decline
is that in some instances it may indicate an early stageof Alzheimer’s disease. Many (but not all) people withsubjective cognitive decline go on to develop MCI anddementia (see Prevalence section, page 16).
Dementia Due to Alzheimer’s Disease
Dementia due to Alzheimer’s disease is characterized
by noticeable memory, thinking and behavioral
symptoms that impair a person’s ability to function
in daily life, along with evidence of an Alzheimer’srelated brain change.
Individuals with Alzheimer’s dementia experience
multiple symptoms that change over a period of years.
These symptoms reflect the degree of damage to nerve
cells in different parts of the brain. The pace at which
symptoms of dementia advance from mild to moderate
to severe differs from person to person.
In the mild stage of Alzheimer’s dementia, mostpeople are able to function independently in many
areas but are likely to require assistance with some
activities to maximize independence and remain safe.
They may still be able to drive, work and participate
in favorite activities.
In the moderate stage of Alzheimer’s dementia,
which is often the longest stage, individuals may havedifficulties communicating and performing routine
tasks, including activities of daily living (such as bathing
and dressing); become incontinent at times; and start
having personality and behavioral changes, including
suspiciousness and agitation. In the severe stageof Alzheimer’s dementia, individuals need help withactivities of daily living and are likely to require aroundthe-clock care.
The effects of Alzheimer's disease on an individual's
physical health become especially apparent in thesevere stage of Alzheimer’s dementia. Because ofdamage to areas of the brain involved in movement,
individuals become bed-bound. Being bed-boundmakes them vulnerable to conditions including bloodclots, skin infections and sepsis, which triggers bodywide inflammation that can result in organ failure.
Damage to areas of the brain that control swallowing
makes it difficult to eat and drink. This can result in
individuals swallowing food into the trachea (windpipe)
instead of the esophagus (food pipe). Food particles
may be deposited in the lungs and cause lung infection.
This type of infection is called aspiration pneumonia,
and it is a contributing cause of death among many
individuals with Alzheimer’s (see Mortality andMorbidity section, page 24).

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

TABLE 1

Signs of Alzheimer’s or Other Dementias Compared with Typical Age-Related Changes*
Signs of Alzheimer’s or Other Dementias

Typical Age-Related Changes

Memory loss that disrupts daily life: One of the most common signs of Alzheimer’s is memory loss,

Sometimes forgetting names or

especially forgetting recently learned information. Others include forgetting important dates or

appointments, but remembering

events, asking for the same information over and over, and increasingly needing to rely on memory

them later.

aids (for example, reminder notes or electronic devices) or family members for things that used to behandled on one’s own.
Challenges in planning or solving problems: Some people experience changes in their ability to develop

Making occasional errors whenand follow a plan or work with numbers. They may have trouble following a familiar recipe, keeping trackbalancing a checkbook.

of monthly bills or counting change. They may have difficulty concentrating and take much longer to do
things than they did before.
Difficulty completing familiar tasks at home, at work or at leisure: People with Alzheimer’s often findOccasionally needing help to use

it hard to complete daily tasks. Sometimes, people have trouble driving to a familiar location, managing a

the settings on a microwave orbudget at work or remembering the rules of a favorite game.

record a television show.

Confusion with time or place: People with Alzheimer’s can lose track of dates, seasons and the passage ofGetting confused about the day oftime. They may have trouble understanding something if it is not happening immediately. Sometimes they

the week but figuring it out later.

forget where they are or how they got there.
Trouble understanding visual images and spatial relationships: For some people, having vision problems

Vision changes related to cataracts,

is a sign of Alzheimer’s. They may have difficulty reading, judging distance and determining color or

glaucoma or age-related macular

contrast, which may cause problems with driving.

degeneration.

New problems with words in speaking or writing: People with Alzheimer’s may have trouble following orSometimes having trouble finding

joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or

the right word.

they may repeat themselves. They may struggle with vocabulary, have problems finding the right word orcall things by the wrong name (e.g., calling a watch a “hand clock”).
Misplacing things and losing the ability to retrace steps: People with Alzheimer’s may put things in

Misplacing things from time to time

unusual places, and lose things and be unable to go back over their steps to find them again. Sometimes,

and retracing steps to find them.

they accuse others of stealing. This may occur more frequently over time.
Decreased or poor judgment: People with Alzheimer’s may experience changes in judgment or decision-

Making a bad decision once

making. For example, they may use poor judgment when dealing with money, giving large amounts toin a while.

telemarketers. They may pay less attention to grooming or keeping themselves clean.
Withdrawal from work or social activities: People with Alzheimer’s may start to remove themselves from

Sometimes feeling weary of work,

hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports

family and social obligations.

team or remembering how to complete a favorite hobby. They may also avoid being social because of thechanges they have experienced.
Changes in mood and personality: The mood and personalities of people with Alzheimer’s can change.

Developing very specific ways of

They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, atdoing things and becoming irritablework, with friends or in places where they are out of their comfort zones.

when a routine is disrupted.

*For more information about the symptoms of Alzheimer’s, visit alz.org/10signs.

Overview

7

Biomarkers: Tools for Diagnosis andAdvancing Research
A biomarker is a biological factor that can bemeasured to indicate the presence or absenceof a disease, the risk of developing a disease ordisease progression. For example, high blood
glucose level is a biomarker of diabetes, and highblood pressure is a biomarker of heart diseaserisk. Among several factors being studied as
biomarkers for Alzheimer’s are the amountsof beta-amyloid and abnormal tau in the brain
as shown on positron emission tomography(PET) imaging, levels of certain proteins in fluid(for example, levels of beta-amyloid and tau
in cerebrospinal fluid and levels of particulargroups of proteins in blood), and level of glucose
metabolism in the brain as shown on PET imaging
using the radiotracer fluorodeoxyglucose. Finding
a simple and inexpensive test, such as a blood
test, to diagnose Alzheimer’s would be ideal forpatients, physicians and scientists. Research isunderway to develop such a test.

It’s important to note that some individuals havedementia-like symptoms without the progressive
brain changes of Alzheimer’s or other degenerative
brain diseases. Common causes of dementia-like
symptoms are depression, untreated sleep apnea,delirium, side effects of medications, thyroid
problems, certain vitamin deficiencies and excessive
alcohol consumption. Unlike Alzheimer’s and otherdementias, these conditions often may be reversedwith treatment.

Diagnosis of Dementia Due to
Alzheimer’s Disease
There is no single test for dementia due to Alzheimer’s
disease. Instead, physicians (often with the help ofspecialists such as neurologists, neuropsychologists,
geriatricians and geriatric psychiatrists) use a variety
of approaches and tools to help make a diagnosis.
They include the following:• Obtaining a medical and family history from theindividual, including psychiatric history and historyof cognitive and behavioral changes.
• Asking a family member to provide input aboutchanges in thinking skills and behavior.
• Conducting cognitive tests and physical andneurologic examinations.
• Having the individual undergo blood tests andbrain imaging to rule out other potential causesof dementia symptoms, such as a tumor or certain
vitamin deficiencies.
• In some circumstances, using brain imaging
tools to find out if the individual has high levelsof beta-amyloid, a hallmark of Alzheimer’s; normal
levels would suggest Alzheimer’s is not the causeof dementia.
Although physicians can almost always determine if aperson has dementia, it may be difficult to identify theexact cause. Alzheimer’s disease is the most common
cause of dementia, but there are other causes aswell. 20-21 As shown in Table 2, different causes ofdementia are associated with distinct symptom patterns
and brain abnormalities. Many people with dementia
have brain changes associated with more than one
cause of dementia. 22-27 This is called mixed dementia.
Some studies27-28 report that the majority of people
with the brain changes of Alzheimer’s also had thebrain changes of a second cause of dementia on
autopsy. It is important that individuals receive an
accurate diagnosis to ensure they receive treatment
and follow-up care appropriate to their specific formof dementia.

8

TABLE 2

Common Causes of Dementia and Associated Characteristics
Cause

Characteristics

Alzheimer’s

Alzheimer's disease is the most common cause of dementia, accounting for an estimated 60 to 80 percent of cases.

diseaseRecent large autopsy studies show that about half of individuals with Alzheimer's dementia have Alzheimer's disease
brain changes (pathology) as well as the brain changes of one or more other causes of dementia, such as cerebrovasculardisease or Lewy body disease. This is called mixed pathology, and if recognized during life is called mixed dementia.
Difficulty remembering recent conversations, names or events is often an early clinical symptom; apathy and depression
are also often early symptoms. Later symptoms include impaired communication, disorientation, confusion, poor judgment,
behavioral changes and, ultimately, difficulty speaking, swallowing and walking.
The hallmark pathologies of Alzheimer’s disease are the accumulation of the protein fragment beta-amyloid (plaques)
outside neurons in the brain and twisted strands of the protein tau (tangles) inside neurons. These changes areaccompanied by the damage and death of neurons. Alzheimer's is a slowly progressive brain disease that begins many
years before symptoms emerge.

Cerebrovascular

Cerebrovascular disease refers to the process by which blood vessels in the brain are damaged and brain tissue isdiseaseinjured. People with dementia whose brains show evidence of cerebrovascular disease are said to have vasculardementia. About 5 percent to 10 percent of individuals with dementia show evidence of vascular dementia alone. 27-28
However, it is more common as a mixed pathology, with most cases showing the brain changes of cerebrovasculardisease and Alzheimer's disease.
Impaired judgment or impaired ability to make decisions, plan or organize is more likely to be the initial symptom,
as opposed to the memory loss often associated with the initial symptoms of Alzheimer’s. In addition to changes
in cognitive function, people with vascular dementia can have difficulty with motor function, especially slow gait
and poor balance.
Vascular dementia occurs most commonly from blood vessel blockage or damage leading to areas of dead tissue or
bleeding in the brain. The location, number and size of the brain injuries determine whether dementia will result and how
the individual’s thinking and physical functioning will be affected.

Lewy body

Lewy bodies are abnormal aggregations (or clumps) of the protein alpha-synuclein in neurons. When they develop

diseasein a part of the brain called the cortex, dementia (called dementia with Lewy bodies or DLB) can result. People with
DLB have some of the symptoms common in Alzheimer’s, but are more likely to have initial or early symptoms of sleep
disturbances, well-formed visual hallucinations, and slowness, gait imbalance or other parkinsonian movement features.
These features, as well as early visuospatial impairment, may occur in the absence of significant memory impairment.
About 5 to 10 percent of individuals with dementia show evidence of DLB alone, but most people with DLB also have
Alzheimer's disease pathology.

Mixed

When an individual shows the brain changes of more than one cause of dementia, mixed pathologies are considered the cause.

pathologies

When these pathologies result in dementia symptoms during life, the person is said to have mixed dementia.
Studies suggest that mixed dementia is more common than previously recognized, with about 50 percent of people
with dementia who were studied at Alzheimer's Disease Centers having pathologic evidence of more than one cause ofdementia. 28 In community-based studies, the percentage of mixed dementia cases is considerably higher. 27 The likelihoodof having mixed dementia increases with age and is highest in the oldest-old (people age 85 or older).41-42

Overview

9TABLE 2 (cont.)

Common Causes of Dementia and Associated Characteristics
Cause

Characteristics

Fronto-FTLD includes dementias such as behavioral-variant FTLD, primary progressive aphasia, Pick’s disease, corticobasal

temporal lobar

degeneration and progressive supranuclear palsy.

degeneration(FTLD)

Typical early symptoms include marked changes in personality and behavior and/or difficulty with producing orcomprehending language. Unlike Alzheimer’s, memory is typically spared in the early stages of disease.
Nerve cells in the front (frontal lobe) and side regions (temporal lobes) of the brain are especially affected, and theseregions become markedly atrophied (shrunken). In addition, the upper layers of the cortex typically become soft andspongy and have abnormal protein inclusions (usually tau protein or the transactive response DNA-binding protein).
The symptoms of FTLD may occur in those age 65 years and older, similar to Alzheimer’s, but most people with FTLD
develop symptoms at a younger age. About 60 percent of people with FTLD are ages 45 to 60. FTLD accounts for lessthan 10 percent of dementia cases.43

Parkinson’s
disease (PD)

Problems with movement (slowness, rigidity, tremor and changes in gait) are common symptoms of PD.
In PD, alpha-synuclein aggregates appear in an area deep in the brain called the substantia nigra. The aggregates arethought to cause degeneration of the nerve cells that produce dopamine.44-45
As PD progresses, it often results in dementia secondary to the accumulation of alpha-synuclein in the cortex (similar to DLB)or the accumulation of beta-amyloid clumps and tau tangles (similar to Alzheimer’s).

Treatment of Alzheimer’s Dementia
Pharmacologic Treatment
None of the pharmacologic treatments (medications)available today for Alzheimer’s dementia slow or stop
the damage and destruction of neurons that cause
Alzheimer’s symptoms and make the disease fatal.
The U.S. Food and Drug Administration (FDA) has
approved six drugs for the treatment of Alzheimer’s— rivastigmine, galantamine, donepezil, memantine,
memantine combined with donepezil, and tacrine(tacrine is now discontinued in the United States). With
the exception of memantine, these drugs temporarily
improve symptoms by increasing the amount ofchemicals called neurotransmitters in the brain.
Memantine blocks certain receptors in the brain fromexcess stimulation that can damage nerve cells. The
effectiveness of these drugs varies from person toperson and is limited in duration.
Many factors contribute to the difficulty of developing
effective treatments for Alzheimer’s. These factors
include the slow pace of recruiting participants to clinicalstudies, gaps in knowledge about the precise molecularchanges and biological processes in the brain that cause
Alzheimer’s disease, and the relatively long time needed
to observe whether an investigational treatment affects
disease progression.

10

Many researchers believe that future treatments toslow or stop the progression of Alzheimer’s disease andpreserve brain function will be most effective whenadministered early in the disease process, either at the
MCI due to Alzheimer’s or preclinical stage. Biomarker
tests will be essential to identify which individuals are inthese early stages and should receive treatments when
they are available. Biomarkers also will be critical formonitoring the effects of treatment. Already, biomarker
tests are playing an important role in drug development
because they enable researchers to recruit into clinical
trials only those individuals with the Alzheimer’s brainchanges that the drug has been designed to affect. 29 The
most effective biomarker test or combination of tests
may differ depending on the stage of the disease andother factors. 30
Non-Pharmacologic Therapy
Non-pharmacologic therapies are those that do not
involve medication. They have been studied in people
with Alzheimer’s dementia and in cognitively normal
individuals who would like to prevent dementia or slow
cognitive decline.
People with Alzheimer’s Dementia
Non-pharmacologic therapies are often used in people
with Alzheimer’s dementia with the goal of maintaining
or improving cognitive function, the ability to perform
activities of daily living or overall quality of life. They

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

also may be used with the goal of reducing behavioral
symptoms such as depression, apathy, wandering, sleep
disturbances, agitation and aggression. Examples include
computerized memory training, listening to favorite
music as a way to stir recall, and incorporating special
lighting to lessen sleep disorders. As with current
pharmacologic therapies, non-pharmacologic therapies
do not slow or stop the damage and destruction ofneurons that cause Alzheimer’s symptoms and makethe disease fatal.
A meta-analysis31 and systematic reviews32-33 of
non-pharmacologic therapies tested in randomized
controlled trials (in which participants are randomly
assigned to either receive or not receive a therapy, andthe results for the two groups are compared) have foundthat some are beneficial to people with Alzheimer’s
dementia. Among these are exercise31-32 and cognitive
stimulation. 33 Specifically, the meta-analysis foundthat aerobic exercise and a combination of aerobic andnon-aerobic exercise had positive effects on cognitive
function, while a systematic review32 found that exercise
has a positive effect on overall cognitive function
and may slow the rate of cognitive decline in people
with Alzheimer’s. However, researchers caution that
additional randomized controlled trials involving larger
numbers of participants are needed to understand towhat extent exercise may slow cognitive decline.
A second systematic review33 found that cognitive
stimulation had beneficial effects on cognitive
function and some aspects of well-being in people
with Alzheimer’s dementia. Cognitive stimulation
ranged from object categorization activities to reality
orientation exercises. No single type of cognitive
stimulation was identified as being more effective thananother. Benefits to cognitive function lasted up to
3 months after cognitive stimulation activities ended.
Cognitive stimulation did not affect mood, challenging
behaviors or ability to perform activities of daily living.
A third systematic review34 reported that cognitive
stimulation was associated with improved scores on
tests of depression in people with mild-to-moderate
Alzheimer’s dementia.
Cognitively Normal Individuals
Cognitively normal individuals may use nonpharmacologic therapies with the goal of slowing
cognitive decline or preventing dementia. A systematic
review35 of the use of supplements, including (but notlimited to) C, D and E vitamins, omega-3 fatty acids,
and ginkgo biloba, found little to no benefit of overthe-counter supplements in preventing cognitive
decline, MCI or Alzheimer’s dementia. Evidence froma systematic review36 of whether cognitive training

prevents cognitive decline found that cognitive training
improved performance in the specific domain tested(for example, processing speed, executive function,
memory or reasoning), but the evidence was insufficient
to show that cognitive training prevented or delayedcognitive decline or dementia. A third systematic
review37 examined whether physical activity prevented
cognitive decline and Alzheimer’s dementia. The review
found that the evidence was largely insufficient to showthat short-term, single-component physical activity
interventions promoted cognitive function or prevented
cognitive decline or dementia in older adults.

Living with Alzheimer’s Dementia
Studies have consistently shown that active
management of Alzheimer’s and other dementias canimprove quality of life for affected individuals and theircaregivers. 38-40 Active management includes:• Appropriate use of available treatment options.
• Effective management of coexisting conditions.
• Coordination of care among physicians, other healthcare professionals and lay caregivers.
• Participation in activities that are meaningful andbring purpose to one’s life.
• Having opportunities to connect with others livingwith dementia; support groups and supportive
services are examples of such opportunities.
• Becoming educated about the disease.
• Planning for the future.
To learn more about managing Alzheimer’s dementia, as
well as practical information for living with dementia andbeing a caregiver, visit alz.org.

Uncommon Genetic Factors Associated with
Alzheimer’s Disease
Certain genetic mutations and the extra copy ofchromosome 21 that characterizes Down syndrome
are uncommon genetic factors that strongly influence
Alzheimer’s risk. There are also common genetic
factors, such as the e2, e3 and e4 forms of the gene
apolipoprotein E (APOE, see page 12), that influence
Alzheimer’s risk.
Genetic Mutations
A small percentage of Alzheimer’s cases (an estimated
1 percent or less)46 develop as a result of mutations
to any of three specific genes. A genetic mutation
is an abnormal change in the sequence of chemicalpairs that make up genes. These mutations involve thegene for the amyloid precursor protein (APP) and thegenes for the presenilin 1 and presenilin 2 proteins.
Those inheriting an Alzheimer’s mutation to the APP

Overview11

or presenilin 1 genes are guaranteed to develop thedisease. Those inheriting an Alzheimer’s mutation to
the presenilin 2 gene have a 95 percent chance ofdeveloping the disease.47 Individuals with Alzheimer’s
mutations in any of these three genes tend to develop
symptoms before age 65, sometimes as young as age 30,
while the vast majority of individuals with Alzheimer’s
have late-onset disease, in which symptoms appear atage 65 or older.
Trisomy in Down Syndrome
In Down syndrome, an individual is born with threecopies of chromosome 21 (called trisomy 21) insteadof two. People with Down syndrome have an increased
risk of developing Alzheimer’s, and this is believed tobe related to trisomy 21. Chromosome 21 includes thegene that encodes for the production of APP, whichin people with Alzheimer’s is cut into beta-amyloid
fragments that accumulate into plaques. Having an extra
copy of chromosome 21 may increase the production ofbeta-amyloid fragments produced in the brain.
Overall, people with Down syndrome develop
Alzheimer’s at an earlier age than people without Down
syndrome. By age 40, most people with Down syndrome
have significant levels of beta-amyloid plaques and tau
tangles in their brains.48 As with all adults, advancing
age increases the likelihood that a person with Down
syndrome will exhibit symptoms of Alzheimer’s.
According to the National Down Syndrome Society,about 30 percent of people with Down syndrome whoare in their 50s have Alzheimer’s dementia.49 About
50 percent of people with Down syndrome in their 60s
have Alzheimer’s dementia.49

Risk Factors for Alzheimer’s Dementia
With the exception of cases of Alzheimer’s linked togenetic mutations and trisomy 21, experts believethat Alzheimer’s, like other common chronic diseases,
develops as a result of multiple factors rather than asingle cause.
Age, APOE-e4 and Family History
The greatest risk factors for late-onset Alzheimer’s
are older age,50-51 carrying the e4 form of the APOE
gene52-53 and having a family history of Alzheimer’s. 54-57
Age
Age is the greatest of these three risk factors, with thevast majority of people with Alzheimer’s dementia beingage 65 or older. As noted in the Prevalence section(see page 16), the percentage of people with Alzheimer’s
dementia increases dramatically with age: 3 percent ofpeople age 65-74, 17 percent of people age 75-84 and

12

TABLE 3

Percentage of Black/African Americans and European
Americans with Specified APOE Pairs
Black/African

European

Americans*

Americans

e3/e3

45.2

63.4

e3/e4

28.6

21.4

e3/e2

15.1

10.2

e2/e4

5.7

2.4

e4/e4

4.5

2.4

e2/e2

0.7

0.2

APOE Pair

Created from data from Rajan et al.59*Percentages do not total 100 due to rounding.

32 percent of people age 85 or older have Alzheimer’s
dementia. 51 It is important to note that Alzheimer’s
dementia is not a normal part of aging,58 and older age
alone is not sufficient to cause Alzheimer’s dementia.
APOE
The APOE gene provides the blueprint for a protein thattransports cholesterol in the bloodstream. Everyone
inherits one of three forms (alleles) of the APOE gene
— e2, e3 or e4 — from each parent, resulting in six
possible APOE pairs: e2/e2, e2/e3, e2/e4, e3/e3, e3/e4
and e4/e4. Researchers have found differences in thefrequency of these pairs in different racial and ethnic
groups. For example, recent data show that a higher
percentage of black/African Americans than European
Americans have at least one copy of the e4 allele(see Table 3). 59-61
Having the e4 form of APOE increases one’s risk ofdeveloping Alzheimer’s compared with having the e3
form, but does not guarantee that an individual willdevelop Alzheimer’s. Having the e2 form may decrease
one’s risk compared with having the e3 form. Those
who inherit one copy of the e4 form have three times
the risk of developing Alzheimer’s compared with thosewith two copies of the e3 form, while those who inherit
two copies of the e4 form have an eight- to 12-foldrisk.62-64 In addition, those with the e4 form are more
likely to develop Alzheimer’s at a younger age thanthose with the e2 or e3 forms of the APOE gene.65
A meta-analysis including 20 published articles
describing the frequency of the e4 form amongpeople in the United States who had been diagnosed
with Alzheimer’s found that 56 percent had one copy

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

of the APOE-e4 gene, and 11 percent had two copiesof the APOE-e4 gene.66 Another study found thatamong 1,770 diagnosed individuals from 26 Alzheimer’s
Disease Centers across the United States, 65 percent
had at least one copy of the APOE-e4 gene.67
However, studies of Alzheimer’s risk based on APOE
status among black/African Americans have had
inconsistent results. For example, some have found thathaving one or more copies of APOE-e4 did not increaserisk among black/African Americans,60-61,68 while otherstudies have found that APOE-e4 significantly increased
risk among black/African Americans.69-70 More researchis needed to better understand the genetic mechanisms
involved in Alzheimer’s risk among different racial andethnic groups.
Family History
A family history of Alzheimer’s is not necessary for anindividual to develop the disease. However, individuals
who have a parent, brother or sister with Alzheimer’s
dementia are more likely to develop the disease thanthose who do not have a first-degree relative with
Alzheimer’s. 54,62 Those who have more than one firstdegree relative with Alzheimer’s are at even higher risk. 57
When diseases run in families, heredity (genetics) andshared environmental and lifestyle factors (for example,
access to healthy foods and habits related to physicalactivity) may play a role. A recent large, populationbased study found that having a parent with dementia
increases risk independent of known genetic risk factors
such as APOE-e4.71 While some studies have suggested
that an individual whose mother had dementia is more
likely to have the early brain changes of dementia thanan individual whose father developed dementia,72-73 thisstudy found that after adjusting for risk factors suchas APOE status, dementia risk was similar regardless ofwhether one’s mother or father had dementia.
Modifiable Risk Factors
Although risk factors such as age and family history
cannot be changed, other risk factors can be changed,
or modified, to reduce risk of cognitive decline anddementia. It’s important to note that “reducing risk” ofcognitive decline and dementia is not synonymous withpreventing cognitive decline and dementia. Individuals
who take measures to reduce risk may still develop
dementia, but are less likely to develop it. A report74
evaluating the state of the evidence on the effects ofmodifiable risk factors on cognitive decline and dementia
concluded that there is sufficiently strong evidence,from a population-based perspective, that regularphysical activity and management of cardiovascularrisk factors (especially diabetes, obesity, smoking andhypertension) is associated with reduced risk of cognitive

decline and may be associated with reduced risk ofdementia. It also concluded that there is sufficiently
strong evidence that a healthy diet, lifelong learning andcognitive training are associated with reduced risk ofcognitive decline. A report from the National Academyof Medicine (formerly the Institute of Medicine)
examined the evidence regarding modifiable risk factors
for cognitive decline and reached similar conclusions.75
More research is needed to understand the biologicalmechanisms by which these factors reduce risk.
Cardiovascular Disease Risk Factors
Brain health is affected by the health of the heart andblood vessels. Although it makes up just 2 percent ofbody weight, the brain consumes 20 percent of thebody’s oxygen and energy supplies.76 A healthy heart
ensures that enough blood is pumped to the brain, while
healthy blood vessels enable the oxygen- and nutrientrich blood to reach the brain so it can function normally.
Many factors that increase the risk of cardiovasculardisease are also associated with a higher risk ofdementia.77 These factors include smoking78-82 anddiabetes. 83-86 Some studies propose that impaired
glucose processing (a precursor to diabetes) may also
result in an increased risk for dementia. 87-89 The age
at which some risk factors develop appears to affectdementia risk. For example, midlife obesity,87,90-93
hypertension,87,94-98 prehypertension (systolic bloodpressure from 120 to 139 mm Hg or diastolic pressure
from 80 to 89 mm Hg)98 and high cholesterol99-100
are associated with an increased risk of dementia.
However, late-life obesity101 and hypertension onset
after age 80102 have been associated with decreased riskof dementia. More research is needed to understand
why the effects of some modifiable risk factors maychange with age. Regarding blood pressure, there is
now strong evidence from a large-scale clinical trial that
intensive medical treatment to reduce blood pressure
can safely and significantly reduce the occurrence of
MCI and a combined outcome of MCI and dementia inolder adults who have hypertension.103
Building on the connection between heart healthand brain health, researchers have found that factorsthat protect the heart may also protect the brain andreduce the risk of developing Alzheimer’s or otherdementias. Physical activity104-111 appears to be one ofthese factors. Although researchers have studied a wide
variety of exercises, they do not yet know which specifictypes of exercises, what frequency of exercise or what
duration of activity may be most effective in reducing
risk. In addition to physical activity, emerging evidence
suggests that consuming a heart-healthy diet may be
associated with reduced dementia risk.112-116 A heart-

Overview

13healthy diet emphasizes fruits, vegetables, whole grains,
fish, chicken, nuts and legumes while limiting saturated
fats, red meat and sugar.
Researchers have begun studying combinations ofhealth factors and lifestyle behaviors (for example,
blood pressure and physical activity) to learn whether
combinations of risk factors better identify Alzheimer’sand dementia risk than individual risk factors. They
are also studying whether intervening on multiple
risk factors simultaneously has a greater chance of
reducing risk than addressing a single risk factor.
Indeed, one such study,117 the Finnish GeriatricIntervention Study to Prevent Cognitive Impairment andDisability (FINGER), found that a multidomain lifestyleintervention was associated with beneficial effects on
cognitive function in elderly individuals at high risk forcognitive decline. The success of FINGER has led to thelaunch of multidomain lifestyle intervention studies inother countries, including the Alzheimer's Association
U.S. Study to Protect Brain Health Through Lifestyle
Intervention to Reduce Risk (U.S. POINTER).118
Education
People with more years of formal education are at lower
risk for Alzheimer’s and other dementias than thosewith fewer years of formal education.60,119-123 Some
researchers believe that having more years of educationbuilds “cognitive reserve.” Cognitive reserve refers tothe brain’s ability to make flexible and efficient use ofcognitive networks (networks of neuron-to-neuron
connections) to enable a person to continue to carryout cognitive tasks despite brain changes124-125 suchas beta-amyloid and tau accumulation. The number ofyears of formal education is not the only determinantof cognitive reserve. Having a mentally stimulating job
and engaging in other mentally stimulating activities may
also help build cognitive reserve.126-129
In addition, having fewer years of formal education isassociated with lower socioeconomic status,130 which
in turn may increase one’s likelihood of experiencing
poor nutrition and decrease one’s ability to afford healthcare or medical treatments, such as treatments for
cardiovascular risk factors. In addition, people with fewer
years of education tend to have more cardiovascular risk
factors for Alzheimer’s, including being less physically
active131 and having a higher risk of diabetes132-134 andcardiovascular disease.135
Social and Cognitive Engagement
Additional studies suggest that remaining socially andmentally active throughout life may support brain
health and possibly reduce the risk of Alzheimer’s andother dementias.136-146 Remaining socially and mentally
active may help build cognitive reserve, but the exact

14

mechanism by which this may occur is unknown. Moreresearch is needed to better understand how social andcognitive engagement may affect biological processes toreduce risk.
Traumatic Brain Injury (TBI)
TBI is the disruption of normal brain function caused
by a blow or jolt to the head or penetration of theskull by a foreign object. According to the Centers for
Disease Control and Prevention (CDC), approximately
2.8 million TBI-related emergency department visits,
hospitalizations and deaths occurred in 2013, the latest
year for which information is available.147 The leading
causes of TBI that resulted in emergency department
visits were falls, being struck by an object and motor
vehicle crashes.147
Two ways to classify the severity of TBI are by the
duration of loss of consciousness or post-traumatic
amnesia148 and by the individual’s initial score on the
15-point Glasgow Coma Scale.149• Mild TBI (also known as a concussion) is characterized
by loss of consciousness or post-traumatic amnesia
lasting 30 minutes or less, or an initial Glasgow scoreof 13-15; about 75 percent of TBIs are mild.150• Moderate TBI is characterized by loss of
consciousness or post-traumatic amnesia lasting
more than 30 minutes but less than 24 hours, oran initial Glasgow score of 9-12.
• Severe TBI is characterized by loss of consciousness
or post-traumatic amnesia lasting 24 hours or more,or an initial Glasgow score of 8 or less.
TBI increases the risk of dementia, including Alzheimer’s
dementia.151 The risk of dementia increases with thenumber of TBIs sustained. Even those who experience
mild TBI are at increased risk of dementia compared withthose who have not had a TBI. A recent study found thatmild TBI is associated with a two-fold increase in the riskof dementia diagnosis.152
Chronic traumatic encephalopathy (CTE) is aneuropathologic diagnosis (meaning it is characterized
by brain changes that can only be identified at autopsy)
associated with repeated blows to the head, such as
those that may occur while playing contact sports. It
is also associated with the development of dementia.
Currently, there is no test to determine if someone has
CTE-related brain changes during life. A recent review ofavailable literature indicates that the greatest risk factor
for developing CTE-related brain changes is repetitive
brain trauma — repeated, forceful blows to the headthat do not, individually, result in symptoms.153 Like
Alzheimer’s dementia, CTE is characterized by tangles ofan abnormal form of the protein tau in the brain. Unlike

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

Alzheimer’s dementia, these tangles typically appear
around small blood vessels, and beta-amyloid plaques
are not commonly present.154-155 How the brain changes
associated with CTE are linked to cognitive or behavioral
dysfunction is unclear.

Looking to the Future
The identification of biomarkers for Alzheimer’s enables
early detection of the disease and will accelerate
the development of new therapies by ensuring thatappropriate people are enrolled in clinical trials. With thediscovery that Alzheimer’s may begin 20 years or more
before the onset of symptoms, a substantial window oftime has been opened to intervene in the progression of
the disease. In the future, more will be understood about
which therapies will be most effective at which points inthe disease continuum.

Overview

15

PREVALENCE

5.8
MILLION

Americans are living with
Alzheimer’s dementia.

Millions of Americans have Alzheimer’s or otherdementias. As the size and proportion of the U.S.
population age 65 and older continue to increase,
the number of Americans with Alzheimer’s or otherdementias will grow. This number will escalate rapidly
in coming years, as the population of Americans age
65 and older is projected to grow from 55 million in2019 to 88 million by 2050.156-157 The baby boom
generation has already begun to reach age 65 andbeyond,158 the age range of greatest risk of Alzheimer’s
dementia; in fact, the oldest members of the baby boom
generation turn age 73 in 2019.
This section reports on the number and proportionof people with Alzheimer’s dementia to describe themagnitude of the burden of Alzheimer’s on thecommunity and health care system. The prevalenceof Alzheimer’s dementia refers to the number andproportion of people in a population who have
Alzheimer’s dementia at a given point in time.
Incidence refers to the number or rate of new cases
per year. Estimates from selected studies on thenumber and proportion of people with Alzheimer’sor other dementias vary depending on how eachstudy was conducted. Data from several studies areused in this section.

Prevalence of Alzheimer’s and Other Dementias
in the United States
An estimated 5.8 million Americans of all ages are livingwith Alzheimer’s dementia in 2019. This number includes
an estimated 5.6 million people age 65 and olderA1,51
and approximately 200,000 individuals under age 65
who have younger-onset Alzheimer’s, though there isgreater uncertainty about the younger-onset estimate.159
Of the 5.8 million people who have Alzheimer’s dementia,
81 percent are age 75 or older (Figure 1). A2,51
Out of the total U.S. population:• One in 10 people (10 percent) age 65 and older has
Alzheimer’s dementia. A3,51,157• The percentage of people with Alzheimer’s dementia
increases with age: 3 percent of people age 65-74,
17 percent of people age 75-84, and 32 percent ofpeople age 85 and older have Alzheimer’s dementia.51

Demographics, and Memory Study (ADAMS), a nationally
representative sample of older adults. A4,160-161 Based on
estimates from ADAMS, 14 percent of people age 71 andolder in the United States have dementia.160
Prevalence studies such as CHAP and ADAMS are
designed so that everyone in the study is evaluated for
dementia. But outside of research settings, a substantial
portion of those who would meet the diagnostic criteria
for Alzheimer’s and other dementias are not diagnosed
with dementia by a physician.162-165 Furthermore, fewer
than half of Medicare beneficiaries who have a diagnosis
of Alzheimer’s or another dementia in their Medicare
billing records (or their caregiver, if the beneficiary’s
cognitive impairment prevented him or her from
responding) report being told of the diagnosis.166-170
Because Alzheimer’s dementia is often underdiagnosed— and if it is diagnosed, people are often unaware of
their diagnosis — a large portion of Americans with
Alzheimer’s may not know they have it.
The estimates of the number and proportion of people
who have Alzheimer’s in this section refer to people whohave Alzheimer’s dementia based on clinical diagnostic
criteria. However, as described in the Overview (see page 4),
current diagnostic guidelines9-12 recognize that Alzheimer’s
disease begins many years before the onset of symptoms
of dementia and that Alzheimer’s disease is defined bybiological changes in the brain, not by symptoms. A
biomarker-based diagnosis of Alzheimer’s disease will
eventually enable biomarker-based prevalence estimates.
Biomarker-based prevalence estimates could significantly
affect the estimates of the number of people with thedisease. Currently, individuals with Alzheimer’s biomarkers
but no dementia are not included in this section’s
prevalence estimates, which are limited to those in the

FIGURE 1

Ages of People with Alzheimer’s Dementia, 2019<65 years:
0.2 million (3%)
65-74 years:
0.9 million (16%)

The estimated number of people age 65 and older with
Alzheimer’s dementia comes from a study using the latest
data from the 2010 U.S. Census and the Chicago Healthand Aging Project (CHAP), a population-based study ofchronic health conditions of older people.51
National estimates of the prevalence of all dementias
are not available from CHAP, but they are available fromother population-based studies including the Aging,

75-84 years:
2.6 million (45%)
85+ years:
2.1 million (36%)

Created from data from Hebert et al. A2,51

Prevalence17dementia stage. However, autopsy studies in individuals
who were cognitively normal for their age found thatroughly 30 percent had Alzheimer’s-related brain changes(plaques and/or tangles) at death.8,13-14 A biomarker-based
prevalence estimate — when we have biomarkers that canreliably detect the changes in the brain — could include thenumber of people throughout the continuum of Alzheimer’s
disease, including those who have mild cognitive impairment(MCI) due to Alzheimer’s and, eventually, those in the
preclinical stage of the disease, even though not all suchindividuals will go on to develop Alzheimer’s dementia.
Additionally, it is worth noting that some individuals now
counted as having Alzheimer’s dementia may not havethe biological brain changes associated with Alzheimer’s
disease because their diagnosis was made based on clinicalsymptoms rather than based on biomarkers. Both autopsy
studies and clinical trials have found that up to 30 percent
of individuals who met the clinical criteria for Alzheimer’s
dementia did not have the required Alzheimer’s-related
brain changes at death.58 That is, they had dementia
without Alzheimer’s biomarkers, and thus did not have
Alzheimer’s dementia; rather, their dementia was causedby something other than Alzheimer’s disease.
The ultimate result of a biomarker-based prevalence
estimate could be a significantly larger total number ofpeople living with Alzheimer’s disease — because of
the inclusion of those with MCI due to Alzheimer’s, andeventually, those in the preclinical stage — but a smaller
number of individuals in the dementia stage of the disease.
A biomarker-based prevalence estimate is years away. One
reason is that it requires epidemiologic and related studies togather biomarker data from their participants so that we canascertain which biomarkers to use to determine prevalence.
The Mayo Clinic Study of Aging has long collected suchdata that could be helpful toward this end. The Healthy
Cognitive Aging Project (HCAP) — a sub-study of the
Health and Retirement Study (HRS) — is now testing thefeasibility of including biomarker data in future. But these
are the exceptions, not the rule. Furthermore, in developing
well-grounded biomarker-based prevalence estimates,
numerous questions remain unanswered, such as: Whichbiomarkers predict Alzheimer’s dementia in the preclinicalstage? What is the minimum biomarker data needed todiagnosis Alzheimer’s disease? How much biomarker study
data is sufficient to estimate national and state prevalence?
Is amyloid-related biomarker data sufficient, or is biomarker
data on the presence of abnormal tau also necessary?
Answering these questions now will speed up the day whenbiomarker-based prevalence estimates can be made. In thatlight, the Alzheimer’s Association is currently convening anexpert think tank to identify a framework on biomarkerbased prevalence estimates.

18

FIGURE 2

Estimated Lifetime Risk for Alzheimer’s Dementia,
by Sex, at Ages 45 and 65
Percentage

Men

Women

25
21.1%

19.5%

20
15
10

11.6%

10.3%

5
0
Age

45

Created from data from Chene et al.

65
184

Prevalence of Subjective Cognitive Decline
The experience of worsening or more frequent confusion
or memory loss (often referred to as subjective cognitive
decline) is one of the earliest warning signs of Alzheimer’s
disease and may be a way to identify people who are athigh risk of developing Alzheimer’s or other dementias aswell as MCI.171-175 Subjective cognitive decline refers to
self-perceived worsening of memory and other thinking
abilities by an individual, separate from cognitive testing,clinical diagnosis or anyone else noticing. Not all of those
who experience subjective cognitive decline go on todevelop MCI or dementia, but many do.176-178 According
to a recent study, those who over time consistently
reported subjective cognitive decline that they foundworrisome were at higher risk for developing Alzheimer’s
dementia.179 The Behavioral Risk Factor Surveillance
System (BRFSS) survey, which includes questions on
self-perceived confusion and memory loss, found that in2015-2016, 11 percent of Americans age 45 and older
reported subjective cognitive decline, but 55 percent of
those who reported it had not consulted a health care
professional about it.180 Individuals concerned about
declines in memory and other cognitive abilities should
consult a health care professional.

Incidence of Alzheimer’s Dementia
While prevalence refers to existing cases of a disease in a
population at a given time, incidence refers to new casesof a disease that develop in a given period of time in adefined population — in this case, the U.S. populationage 65 or older. Incidence provides a measure of risk

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

for developing a disease. According to one study using
data from the Established Populations for Epidemiologic
Study of the Elderly (EPESE), approximately 487,000
people age 65 or older will develop Alzheimer’s dementia
in the United States in 2019. A5 Other studies havearrived at incidence estimates that are much higher. For
example, according to CHAP estimates approximately
910,000 people age 65 or older developed Alzheimer’s
dementia in the United States in 2011.181 A study using
data from the Adult Changes in Thought (ACT) study,
a cohort of members of the Group Health health caredelivery system in the Northwest United States, reported
similar incidence rates.182 The number of new cases of
Alzheimer’s increases dramatically with age: according
to estimates from CHAP, in 2011 the average annual
incidence in people ages 65-74 was 0.4 percent (meaning
four of every 1,000 people will develop Alzheimer’s
dementia in a year); in people ages 75-84, the annual
incidence was 3.2 percent (32 of every 1,000 people),and for ages 85 and older (the “oldest-old”), the incidence
was 7.6 percent (76 of every 1,000 people).181 Becauseof the increasing number of people age 65 and older in
the United States, particularly the oldest-old, the annual
number of new cases of Alzheimer’s and other dementias
is projected to double by 2050.183

Lifetime Risk of Alzheimer’s Dementia
Lifetime risk is the probability that someone of a given
age who does not have a particular condition will develop
the condition during his or her remaining life span. Data
from the Framingham Heart Study were used to estimate
lifetime risks of Alzheimer’s dementia by age and sex. A6,184
As shown in Figure 2 (see page 18), the study found thatthe estimated lifetime risk for Alzheimer’s dementia at age
45 was approximately one in five (20 percent) for womenand one in 10 (10 percent) for men. The risks for both
sexes were slightly higher at age 65.184

Estimates of the Number of People with
Alzheimer’s Dementia by State
Table 4 (see page 20) lists the estimated number ofpeople age 65 and older with Alzheimer’s dementia bystate for 2019, the projected number for 2025, and the
projected percentage change in the number of people
with Alzheimer’s between 2019 and 2025. A7,185
As shown in Figure 3 (see page 21), between 2019 and 2025
every state across the country is expected to experience
an increase of at least 12 percent in the number of people
with Alzheimer’s. These projected increases in the numberof people with Alzheimer’s are due to projected increases
in the population age 65 and older in these states. The
West and Southeast are expected to experience the largest

percentage increases in people with Alzheimer’s dementia
between 2019 and 2025. These increases will have a marked
impact on states’ health care systems, as well as the Medicaid
program, which covers the costs of long-term care andsupport for some older residents with dementia.

Differences Between Women and Men in
the Prevalence and Risk of Alzheimer’s andOther Dementias
More women than men have Alzheimer’s or otherdementias. Almost two-thirds of Americans with
Alzheimer’s are women. A8,51 Of the 5.6 million people
age 65 and older with Alzheimer’s in the United States,
3.5 million are women and 2.1 million are men. A8,51 Basedon estimates from ADAMS, among people age 71 andolder, 16 percent of women have Alzheimer’s or otherdementias compared with 11 percent of men.160
There are a number of potential biological and social
reasons why more women than men have Alzheimer’s orother dementias.186 The prevailing view has been that thisdiscrepancy is due to the fact that women live longer thanmen on average, and older age is the greatest risk factor
for Alzheimer’s.184,187-188 But when it comes to differencein the actual risk of developing Alzheimer’s or otherdementias for men and women of the same age, manystudies of incidence have found no significant difference
between men and women in the proportion who develop
Alzheimer’s or other dementias at any given age.182,188-189
Alternatively, some studies have found a difference
between men and women in the risk of developing
Alzheimer’s or other dementias, but have attributed thedifference to differences in other related health factors.
A recent study using data from the Framingham Heart
Study suggests that because men have a higher rate ofdeath from cardiovascular disease in middle age, men who
survive beyond age 65 may have a healthier cardiovascularrisk profile and thus an apparent lower risk for dementia
than women of the same age.184 Epidemiologists call this“survival bias” because the men who survive to older
ages and are included in studies tend to be the healthiest
men; as a result, they may have a lower risk of developing
Alzheimer’s and other dementias than the men who died at
an earlier age from cardiovascular disease. More research isneeded to support this finding.
Other researchers are questioning whether the riskof Alzheimer’s could actually be higher for women at
any given age due to biological or genetic variations or
differences in life experiences.190 A number of studies
have shown that the APOE-e4 genotype, the best known
genetic risk factor for Alzheimer’s dementia, may havea stronger association with Alzheimer’s dementia in
women than in men191-192 or a stronger relationship with

Prevalence

19TABLE 4

Projections of Total Numbers of Americans Age 65 and Older with Alzheimer's Dementia by State
Projected Number with

Percentage

Projected Number with

Percentage

Alzheimer’s (in thousands)

Increase

Alzheimer’s (in thousands)

Increase

State

2019

2025

2019-2025

Alabama

94

110

17.0

Alaska8

11

Arizona

140

Arkansas

State

2019

2025

2019-2025

Montana

21

27

28.6

37.5

Nebraska

34

40

17.6

200

42.9

Nevada

47

64

36.2

57

67

17.5

New Hampshire

25

32

28.0

California

670

840

25.4

New Jersey

180

210

16.7

Colorado

73

92

26.0

New Mexico

41

53

29.3

Connecticut

78

91

16.7

New York

400

460

15.0

Delaware

19

23

21.1

North Carolina

170

210

23.5

District of Columbia

8.9

9

1.1

North Dakota

14

16

14.3

Florida

560

720

28.6

Ohio

220

250

13.6

Georgia

150

190

26.7

Oklahoma

65

76

16.9

Hawaii

29

35

20.7

Oregon

67

84

25.4

Idaho

26

33

26.9

Pennsylvania

280

320

14.3

Illinois

230

260

13.0

Rhode Island

23

27

17.4

Indiana

110

130

18.2

South Carolina

92

120

30.4

Iowa

65

73

12.3

South Dakota

17

20

17.6

Kansas

54

62

14.8

Tennessee

120

140

16.7

Kentucky

73

86

17.8

Texas

390

490

25.6

Louisiana

89

110

23.6

Utah

33

42

27.3

Maine

28

35

25.0

Vermont

13

17

30.8

Maryland

110

130

18.2

Virginia

150

190

26.7

Massachusetts

130

150

15.4

Washington

110

140

27.3

Michigan

190

220

15.8

West Virginia

38

44

15.8

Minnesota

97

120

23.7

Wisconsin

110

130

18.2

Mississippi

55

65

18.2

Wyoming

10

13

30.0

Missouri

110

130

18.2

Created from data provided to the Alzheimer’s Association by Weuve et al. A7,185

20

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

FIGURE 3

Projected Increases Between 2019 and 2025 in Alzheimer’s Dementia Prevalence by State
12.3% - 18.4%

18.5% - 24.5%

24.6% - 30.7%

30.8% - 36.8%

36.9% - 42.9%

AK

WA
MT

ME

ND

OR

VT NH

MN
ID

WI

SD

NY

WY

PA

IA

NE

NV

UT

IL

CO

CA

KS

AZ

MA
CT RI

MI

NM

IN

NC

AR

SC
MS

TX

VA

KY
TN

HI

NJ

MD DE
DC

WV

MO

OK

OH

AL

GA

LA

FL

Change from 2019 to 2025 for Washington, D.C.: 1.1%
Created from data provided to the Alzheimer’s Association by Weuve et al. A7,185

Alzheimer’s disease biomarkers in women.193 However, a
recent meta-analysis, which combined data from a numberof independent studies, found no difference between men
and women in the association between APOE genotype
and Alzheimer’s dementia except for a slightly elevated risk
for women with the APOE-e3/e4 genotype compared withmen with the same genotype between ages 65 and 75.194 It
is unknown why the APOE gene could convey different risk
for women, but some evidence suggests that it may be due
to an interaction between the APOE-e4 genotype and thesex hormone estrogen.195-196 Finally, because low education
is a risk factor for dementia, it is possible that lower
educational attainment in women than in men born in thefirst half of the 20th century could account for a higher
risk of Alzheimer’s and other dementias in women.197

Racial and Ethnic Differences in the Prevalenceof Alzheimer’s and Other Dementias
Although there are more non-Hispanic whites livingwith Alzheimer’s and other dementias than any otherracial or ethnic group in the United States, older
black/African Americans and Hispanics are more
likely, on a per-capita basis, than older whites to have
Alzheimer’s or other dementias.198-203 Most studies
indicate that older black/African Americans are about
twice as likely to have Alzheimer’s or other dementias
as older whites.181,204-205 Some studies indicate Hispanics
are about one and one-half times as likely to have
Alzheimer’s or other dementias as older whites. A9,205-207
Recent studies suggest the increased likelihood for
Hispanics may be slightly lower than this, depending

Prevalence

21

FIGURE 4

Projected Number of People Age 65 and Older (Total and by Age)in the U.S. Population with Alzheimer’s Dementia, 2010 to 2050
Millions of people
with Alzheimer’s

Ages 65-74

Ages 75-84

Ages 85+
13.8

14
11.6

12
10

8.4

8
6

5.8
4.7

4
2
0
Year

2010

Created from data from Hebert et al.

2020

upon the specific Hispanic ethnic group observed(for example, Mexican Americans compared with
Caribbean Americans). 208
The higher prevalence of Alzheimer’s dementia inminorities compared with whites appears to be due
to a higher incidence of dementia in these groups. 203,208
Variations in health, lifestyle and socioeconomic risk
factors across racial groups likely account for most of thedifferences in risk of Alzheimer’s and other dementias. 209
Despite some evidence that the influence of genetic risk
factors on Alzheimer’s and other dementias may differ by
race,68,70,210 genetic factors do not appear to account for
the large differences in prevalence or incidence among
racial groups. 209,211 Instead, health conditions such as
cardiovascular disease and diabetes, which are associatedwith an increased risk for Alzheimer’s and otherdementias, are believed to account for these differences,
as they are more prevalent in black/African American and
Hispanic people. 212-213 Socioeconomic characteristics,
including lower levels of education, higher rates
of poverty, and greater exposure to adversity anddiscrimination, may also increase risk in black/African
American and Hispanic communities.68,212-214 Somestudies suggest that differences based on race andethnicity do not persist in rigorous analyses that accountfor such factors.120,160,209

22

2030

2040

2050

A10,51

There is evidence that missed diagnoses of Alzheimer’s
and other dementias are more common amongolder black/African Americans and Hispanics thanamong older whites. 215-216 Based on data for Medicare
beneficiaries age 65 and older, Alzheimer’s or anotherdementia had been diagnosed in 10.3 percent of whites,
12.2 percent of Hispanics and 13.8 percent of black/
African Americans. 217 Although rates of diagnosis werehigher among black/African Americans than amongwhites, according to prevalence studies that detect all
people who have dementia irrespective of their use of
the health care system, the rates should be even higher
for black/African Americans.
There are fewer data from population-based cohort
studies regarding the national prevalence of Alzheimer’s
and other dementias in racial and ethnic groups otherthan whites, black/African Americans and Hispanics.
However, a study examining electronic medical
records of members of a large health plan in California
indicated that dementia incidence — determined by thepresence of a dementia diagnosis in members’ medical
records — was highest in black/African Americans,intermediate for Latinos (the term used in the study
for those who self-reported as Latino or Hispanic) andwhites, and lowest for Asian Americans. 218 A follow-up
study with the same cohort showed heterogeneity

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

within Asian-American subgroups, but all subgroups
studied had lower dementia incidence than whites. 219
A recent systematic review of the literature found thatJapanese Americans were the only Asian-American
subgroup with reliable prevalence data, and that they
had the lowest prevalence of dementia compared withall other ethnic groups. 208 More studies, especially those
involving population-based cohorts, are necessary to
draw conclusions about the prevalence of Alzheimer’s
and other dementias in Asian Americans and how it may
differ by subgroup.

Trends in the Prevalence and Incidenceof Alzheimer’s Dementia Over Time
A growing number of studies indicate that theprevalence220-229 and incidence224,229-237 of Alzheimer’s
and other dementias in the United States andother higher-income Western countries may havedeclined in the past 25 years, 223-236 though results are
mixed. 50,181,238-239 These declines have been attributed
to increasing levels of education and improved controlof cardiovascular risk factors. 223,225,230,234,240-241 Suchfindings are promising and suggest that identifying
and reducing risk factors for Alzheimer’s and otherdementias may be effective. Although these findings
indicate that a person’s risk of dementia at any given
age may be decreasing slightly, the total numberof people with Alzheimer’s or other dementias in
the United States and other high-income Westerncountries is expected to continue to increase
dramatically because of the increase in the numberof people at the oldest ages.
It is unclear whether these positive trends will continue
into the future given worldwide trends showing increases
in diabetes and obesity — potential risk factors for
Alzheimer’s dementia — which may lead to a reboundin dementia risk in coming years,91,222,224,242-243 or if
these positive trends pertain to all racial and ethnic
groups.181,220,240-241,244 Thus, while recent findings arepromising, the social and economic burden of Alzheimer’s
and other dementias will continue to grow. Moreover,
68 percent of the projected increase in the global
prevalence and burden of dementia by 2050 will takeplace in low- and middle-income countries, where there
is currently no evidence that the risk of Alzheimer’s andother dementias has been declining. 245

age 65 and older will increase substantially, and the
projected 74 million older Americans will make up over
20 percent of the total population (up from 16 percent
in 2019).157,246 As the number of older Americans grows
rapidly, so too will the numbers of new and existing casesof Alzheimer’s dementia, as shown in Figure 4. A10,51• By 2025, the number of people age 65 and older with
Alzheimer’s dementia is projected to reach 7.1 million— almost a 27 percent increase from the 5.6 million
age 65 and older affected in 2019. A11,51• By 2050, the number of people age 65 and older
with Alzheimer’s dementia may grow to a projected
13.8 million, barring the development of medical
breakthroughs to prevent, slow or cure Alzheimer’s
disease. A10,51
Growth of the Oldest-Old Population
The number of Americans surviving into their 80s, 90s
and beyond is expected to grow dramatically due to
medical advances, as well as social and environmental
conditions. 246 Longer life expectancies and the aging of
the large baby boom cohort will lead to an increase in
the number and percentage of Americans who will be
85 and older, the oldest-old. Between 2012 and 2050,
the oldest-old are expected to comprise an increasing
proportion of the U.S. population age 65 and older— from 14 percent in 2012 to 22 percent in 2050. 246
This will result in an additional 12 million oldest-old
people — individuals at the highest risk for developing
Alzheimer’s dementia. 246• In 2019, about 2.1 million people who have Alzheimer’s
dementia are age 85 or older, accounting for 36 percent
of all people with Alzheimer’s dementia.51• When the first wave of baby boomers reaches age 85(in 2031), it is projected that more than 3 million people
age 85 and older will have Alzheimer’s dementia.51• By 2050, 7 million people age 85 and older are
projected to have Alzheimer’s dementia, accounting
for half (51 percent) of all people 65 and older with
Alzheimer’s dementia.51

Looking to the Future: Aging of theBaby Boom Generation
A large segment of the American population — the baby
boom generation — has begun to reach age 65 and older,ages when the risk for Alzheimer’s and other dementias
is elevated. By 2030, the segment of the U.S. population

Prevalence

23

MORTALIT YAND
MORBIDIT Y

145
PERCENTis the increase in deaths
from Alzheimer's between
2000 and 2017.

Alzheimer’s disease is officially listed as the sixth-leading
cause of death in the United States. 247 It is the fifthleading cause of death for those age 65 and older. 247
However, it may cause even more deaths than official
sources recognize. Alzheimer’s is also a leading cause of
disability and poor health (morbidity). Before a personwith Alzheimer’s dies, he or she lives through years ofmorbidity as the disease progresses.

Deaths from Alzheimer’s Disease
It is difficult to determine how many deaths are causedby Alzheimer’s disease each year because of the way
causes of death are recorded. According to data fromthe Centers for Disease Control and Prevention (CDC),
121,404 people died from Alzheimer’s disease in2017. 248 The CDC considers a person to have died from
Alzheimer’s if the death certificate lists Alzheimer’s as
the underlying cause of death, defined as “the diseaseor injury which initiated the train of events leading
directly to death.”249
Severe dementia frequently causes complications suchas immobility, swallowing disorders and malnutrition
that significantly increase the risk of serious acuteconditions that can cause death. One such condition ispneumonia (infection of the lungs), which is the mostcommonly identified cause of death among elderly
people with Alzheimer’s or other dementias. 250-251 One
autopsy study found that respiratory system diseases
were the immediate cause of death in more than halfof people with Alzheimer’s dementia, followed bycirculatory system disease in about a quarter. 251 Deathcertificates for individuals with Alzheimer’s often list
acute conditions such as pneumonia as the primarycause of death rather than Alzheimer’s. 252-254 As a result,people with Alzheimer’s disease who die due to these
acute conditions may not be counted among the numberof people who die from Alzheimer’s disease, even though
Alzheimer’s disease may well have caused the acutecondition listed on the death certificate. This difficultyin using death certificates to determine the numberof deaths from Alzheimer’s has been referred to as a
“blurred distinction between death with dementia anddeath from dementia.”255
Another way to determine the number of deaths from
Alzheimer’s disease is through calculations that compare
the estimated risk of death in those who have Alzheimer’swith the estimated risk of death in those who do not have
Alzheimer’s. A study using data from the Rush Memory
and Aging Project and the Religious Orders Study
estimated that 500,000 deaths among people age 75 andolder in the United States in 2010 could be attributed
to Alzheimer’s (estimates for people age 65 to 74 were

not available), meaning that those deaths would not be
expected to occur in that year if those individuals did nothave Alzheimer’s. 256
The true number of deaths caused by Alzheimer’s
is somewhere between the number of deaths from
Alzheimer’s recorded on death certificates and thenumber of people who have Alzheimer’s disease when
they die. According to 2014 Medicare claims data, about
one-third of all Medicare beneficiaries who die in a given
year have been diagnosed with Alzheimer’s or anotherdementia. Based on data from the Chicago Healthand Aging Project (CHAP) study, in 2019 an estimated700,000 people age 65 and older in the United States
will have Alzheimer’s when they die. 257 Although someseniors who have Alzheimer’s disease at the time ofdeath die from causes that are unrelated to Alzheimer’s,
many of them die from Alzheimer’s disease itself or fromconditions in which Alzheimer’s was a contributing cause,such as pneumonia.
Irrespective of the cause of death, among people age
70, 61 percent of those with Alzheimer’s dementia are
expected to die before age 80 compared with 30 percent
of people without Alzheimer’s dementia. 258

Public Health Impact of Deaths from
Alzheimer’s Disease
As the population of the United States ages, Alzheimer’s
is becoming a more common cause of death. Althoughdeaths from other major causes have decreased
significantly or remained approximately the same,official records indicate that deaths from Alzheimer’s
disease have increased significantly. Between 2000 and2017, the number of deaths from Alzheimer’s disease asrecorded on death certificates has more than doubled,
increasing 145 percent, while the number of deaths
from the number one cause of death (heart disease)decreased 9 percent (Figure 5, see page 26). 248,259 The
increase in the number of death certificates listing
Alzheimer’s as the underlying cause of death probably
reflects both changes in patterns of reporting deaths on
death certificates over time as well as an increase in theactual number of deaths attributable to Alzheimer’s.

State-by-State Deaths from
Alzheimer’s Disease
Table 5 (see page 27) provides information on the numberof deaths due to Alzheimer’s by state in 2017, the mostrecent year for which state-by-state data are available.
This information was obtained from death certificates andreflects the condition identified by the physician as theunderlying cause of death. The table also provides annual
mortality rates by state to compare the risk of death

Mortality and Morbidity

25

FIGURE 5

Percentage Changes in Selected Causes of Death (All Ages) Between 2000 and 2017
Percentage
160
145.0%
140
120
100
80
60
40
20
0.5%

0

-1.9%

-20

-8.9%

-12.7%-40-60-60.6%-80
Causeof death

Breastcancer

Prostate
cancerHeart
diseaseStrokeHIV

Alzheimer’s
diseaseCreated from data from the National Center for Health Statistics. 248,259

due to Alzheimer’s disease across states with varying
population sizes. For the United States as a whole, in
2017, the mortality rate for Alzheimer’s disease was37.3 deaths per 100,000 people. A12,248

Alzheimer’s Disease Death Rates
As shown in Figure 6 (see page 28), the rate of deaths
due to Alzheimer’s has risen substantially since 2000. 248
Table 6 (see page 28) shows that the rate of death from
Alzheimer’s increases dramatically with age, especiallyafter age 65. A12,248 The increase in the Alzheimer’s death
rate over time has disproportionately affected the oldestold. 259 Between 2000 and 2017, the death rate from
Alzheimer’s increased 31 percent for people age 65 to 74,
but increased 57 percent for people age 75 to 84 and86 percent for people age 85 and older. 248 A recent
report by the CDC determined that even after adjusting26

for differences in age distributions over time, the annual
Alzheimer’s death rate in the United States increased
substantially between 1999 and 2014.260 Therefore, thegrowing proportion of older adults in the country is not
the only explanation for the increase in Alzheimer’s death
rates. Other possible reasons include fewer deaths fromother common causes of deaths in old age such as heartdisease and stroke; increased diagnosis of Alzheimer’s
especially at earlier stages; and increased reporting of
Alzheimer’s as a cause of death by physicians and others
who fill out death certificates. 260

Duration of Illness from Diagnosis to Death
Studies indicate that people age 65 and older survive an
average of 4 to 8 years after a diagnosis of Alzheimer’s
dementia, yet some live as long as 20 years with
Alzheimer’s dementia.182,261-268 This reflects the slow,

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

TABLE 5

Number of Deaths and Annual Mortality Rate (per 100,000) due to Alzheimer’s Disease by State, 2017
NumberMortalityof Deaths

Rate

State

NumberMortalityof Deaths

Rate

2,563

52.6

Montana285

27.1

Alaska98

13.2

Nebraska

698

36.4

Arizona

3,058

43.6

Nevada779

26.0

Arkansas

1,436

47.8

New Hampshire

436

32.5

California

16,23841.1

New Jersey

2,829

31.4

Colorado

1,830

32.6

New Mexico

572

27.4

Connecticut

1,077

30.0

New York

3,521

17.7

Delaware

377

39.2

North Carolina

4,289

41.7

District of Columbia

125

18.0

North Dakota

387

51.2

Florida

6,980

33.3

Ohio

5,117

43.9

Georgia

4,298

41.1

Oklahoma

1,752

44.6

Hawaii465

32.6

Oregon

1,850

44.7

Idaho

672

39.1

Pennsylvania

4,213

32.9

Illinois

4,021

31.4

Rhode Island

435

41.1

Indiana

2,771

41.6

South Carolina

2,549

50.7

Iowa

1,597

50.8

South Dakota

444

51.1

Kansas894

30.7

Tennessee

3,522

52.4

Kentucky

1,765

39.6

Texas

9,545

33.7

Louisiana

2,188

46.7

Utah

991

31.9

601

45.0

Vermont370

59.3

Maryland

1,191

19.7

Virginia

2,549

30.1

Massachusetts

1,841

26.8

Washington

3,710

50.1

Michigan

4,428

44.4

West Virginia

770

42.4

Minnesota

2,474

44.4

Wisconsin

2,428

41.9

Mississippi

1,626

54.5

Wyoming212

36.6

Missouri

2,545

41.6

U.S. Total

121,404

37.3

State
Alabama

Maine

Created from data from the National Center for Health Statistics. A12,248

Mortality and Morbidity

27

FIGURE 6

U.S. Annual Alzheimer’s Death Rate (per 100,000 People) by Year
Rate
40
35

35.9

37.3

30
29.3

25

20.5

27.0

26.6

2008

2010

2012

24.3

22.5

20

27.1

17.6

15
10
5
0
Year

2000

2002

2004

2006

Created from data from the National Center for Health Statistics.

2014

2016 2017

248

TABLE 6

U.S. Annual Alzheimer’s Death Rates (per 100,000 People) by Age and Year
Age

2000

2002

2004

2006

2008

2010

2012

2014

2016

2017

45-54

0.2

0.1

0.2

0.2

0.2

0.3

0.2

0.2

0.2

0.2

55-64

2.0

1.9

1.8

2.1

2.2

2.1

2.2

2.1

2.7

2.8

65-74

18.7

19.6

19.5

19.9

21.1

19.8

17.9

19.6

23.6

24.5

75-84

139.6

157.7

168.5

175.0

192.5

184.5

175.4

185.6

214.1

219.7

85+

667.7

790.9

875.3

923.4

1,002.2

987.1

936.1

1,006.8

1,216.9

1,244.7

Created from data from the National Center for Health Statistics. A12,248

insidious and uncertain progression of Alzheimer’s.
Of the total number of years that they live with
Alzheimer’s dementia, individuals will spend an averageof 40 percent of this time in dementia’s most severe
stage. 258 Much of this time will be spent in a nursing
home. At age 80, approximately 75 percent of people
living with Alzheimer’s dementia are expected to live ina nursing home compared with only 4 percent of thegeneral population at age 80. 258 In all, an estimated
two-thirds of those who die of dementia do so in

28

nursing homes, compared with 20 percent of people
with cancer and 28 percent of people dying from allother conditions. 269

Burden of Alzheimer’s Disease
The long duration of illness before death contributes
significantly to the public health impact of Alzheimer’s
disease because much of that time is spent in a state ofdisability and dependence. Scientists have developed
methods to measure and compare the burden of different

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

diseases on a population in a way that takes into accountnot only the number of people with the condition, butalso the number of years of life lost due to that disease
and the number of healthy years of life lost by virtueof being in a state of disability. The primary measureof disease burden is called disability-adjusted life years(DALYs), which is the sum of the number of years of life
lost due to premature mortality (YLLs) and the number ofyears lived with disability (YLDs), totaled across all thosewith the disease or injury. These measures indicate that
Alzheimer’s is a very burdensome disease, not only to theindividuals with the disease, but also to their families andinformal caregivers, and that the burden of Alzheimer’s
has increased more dramatically in the United States thanthe burden of other diseases in recent years. According to
the most recent Global Burden of Disease classification
system, Alzheimer’s disease rose from the 12th mostburdensome disease or injury in the United States in1990 to the 6th in 2016 in terms of DALYs. In 2016,
Alzheimer’s disease was the 4th highest disease or injury
in terms of YLLs and the 19th in terms of YLDs. 270
Taken together, these statistics indicate that not only
is Alzheimer’s disease responsible for the deaths ofmore and more Americans, but also that the disease iscontributing to more and more cases of poor health anddisability in the United States.

Mortality and Morbidity

29

MORE THAN

CAREGIVING

18.5
BILLION

hours of informal care
were provided by
Alzheimer's and otherdementia caregivers in
2018, a contribution
to the nation valued atnearly $234 billion.

Caregiving refers to attending to another person’s healthneeds. Caregiving often includes assistance with one ormore activities of daily living (ADLs), including bathing
and dressing, as well as multiple instrumental activities ofdaily living (IADLs), such as paying bills, shopping andusing transportation.271-272 Caregivers also provide
emotional support to people with Alzheimer’s as well as
many other forms of help (e.g., communicating andcoordinating care with other family members and healthcare providers, ensuring safety at home and elsewhere,
and managing health conditions; see Table 7, page 32).
More than 16 million Americans provide unpaid care forpeople with Alzheimer’s or other dementias. A13 In
addition to providing descriptive information, this section
compares caregivers of people with dementia to either
caregivers of people with other medical conditions, or ifthat comparison is not available, to non-caregivers.

Unpaid Caregivers
Eighty-three percent of the help provided to older adults
in the United States comes from family members, friends
or other unpaid caregivers.273 Nearly half of all caregivers(48 percent) who provide help to older adults do so forsomeone with Alzheimer’s or another dementia.274 In 2018,caregivers of people with Alzheimer’s or other dementias
provided an estimated 18.5 billion hours of informal (thatis, unpaid) assistance, a contribution to the nation valued at$233.9 billion. This is approximately 46 percent of the net
value of Walmart’s total revenue in 2018 ($500.3 billion)275
and 10 times the total revenue of McDonald’s in 2017($22.8 billion).276 The total lifetime cost of care for someone
with dementia was estimated at $350,174 in 2018 dollars.
The costs associated with family care make up 70 percent
of lifetime dementia care costs.277-278 These estimates may
underestimate the impact of a relative’s dementia on family
caregivers’ health and workplace productivity.279
The three primary reasons caregivers provide care andassistance to a person with Alzheimer’s or another dementia
are (1) the desire to keep a family member or friend at home
(65 percent), (2) proximity to the person with dementia(48 percent) and (3) the caregiver’s perceived obligation
to the person with dementia (38 percent). A14 Individuals
with dementia living in the community are more likely thanolder adults without dementia to rely on multiple unpaid
caregivers (often family members); 30 percent of older adults
with dementia rely on three or more unpaid caregivers,
whereas 23 percent of older adults without dementia rely on
three or more unpaid caregivers.280 Only a small percentageof older adults with dementia do not receive help from family
members or other informal care providers (8 percent). Of
these individuals, nearly half live alone, perhaps making it
more difficult to ask for and receive informal care.280 Living

alone with dementia may be a particular challenge for certain
subgroups, such as lesbian, gay, bisexual and transgender(LGBT) individuals who may experience greater isolation forreasons ranging from social stigma to a diminished social
network of available care providers.281
Who Are the Caregivers?
Several sources have examined the demographic
background of family caregivers of people with
Alzheimer’s or other dementias in the United States,
and found the following:A14,282-286• Approximately two-thirds of dementia caregivers
are women. A14,282-283• About one in three caregivers (34 percent) is age
65 or older. A14• Over 60 percent of caregivers are married, living witha partner or in a long-term relationship. A14,283• Two-thirds of caregivers are non-Hispanic
white, A14,282-283,286 while 10 percent are black/African
American, 8 percent are Hispanic, and 5 percent
are Asian. A14 These percentages may in part reflect
the prevalence of Alzheimer’s disease and relateddementias among different racial/ethnic groups.
• Approximately 40 percent of dementia caregivers havea college degree or more education. A14,283,286• Forty-one percent of caregivers have a householdincome of $50,000 or less. A14• Among primary caregivers (individuals who indicate
having the most responsibility for helping theirrelatives) of people with dementia, over half take careof their parents. 285,287-289• Most caregivers (66 percent) live with the person withdementia in the community. 280• Approximately one-quarter of dementia caregivers
are “sandwich generation” caregivers — meaning thatthey care not only for an aging parent, but also forchildren under age 18. A14,286-287
Caregiving and Women
The responsibilities of caring for someone with dementia
often fall to women. As mentioned above, approximately
two-thirds of dementia caregivers are women, A14,282-283,288-289
and over one-third of dementia caregivers aredaughters.273,280 It is more common for wives to provide
informal care for a husband than vice versa.290 On average,
female caregivers spend more time caregiving than malecaregivers.280 According to the 2014 Alzheimer’s Association
Women and Alzheimer’s Poll, which surveyed both men
and women, of those providing care for 21 to more than
60 hours per week, 67 percent were women.291 Similarly,
the 2015-17 BRFSS surveys found that of all dementia
caregivers who spend more than 40 hours per week
providing care, 73 percent were women.287 Two and a half

Caregiving

31

TABLE 7

Dementia Caregiving Tasks
Helping with instrumental activities of daily living (IADLs), suchas household chores, shopping, preparing meals, providing
transportation, arranging for doctor’s appointments, managing
finances and legal affairs, and answering the telephone.
Helping the person take medications correctly, either via
reminders or direct administration of medications.
Helping the person adhere to treatment recommendations fordementia or other medical conditions.
Assisting with personal activities of daily living (ADLs), such as
bathing, dressing, grooming and feeding and helping the person walk,transfer from bed to chair, use the toilet and manage incontinence.
Managing behavioral symptoms of the disease such as aggressive
behavior, wandering, depressive mood, agitation, anxiety,repetitive activity and nighttime disturbances.
Finding and using support services such as support groups andadult day service programs.
Making arrangements for paid in-home, nursing home orassisted living care.
Hiring and supervising others who provide care.
Assuming additional responsibilities that are not necessarily
specific tasks, such as:• Providing overall management of getting through the day.
• Addressing family issues related to caring for a relative with
Alzheimer’s disease, including communication with otherfamily members about care plans, decision-making andarrangements for respite for the main caregiver.
• Managing other health conditions (i.e., “comorbidities”), suchas arthritis, diabetes or cancer.
• Providing emotional support and a sense of security.

times as many women reported living with the personwith dementia full time.291 Of those providing care to
someone with dementia for more than 5 years, 63 percent
are women.287 Similarly, caregivers who are women may
experience slightly higher levels of burden, impaired mood,depression and impaired health than men, with evidence
suggesting that these differences arise because female
caregivers tend to spend more time caregiving, assume
more caregiving tasks, and care for someone with morecognitive, functional and/or behavioral problems.292-293
Of dementia caregivers who indicate a need for individual
counseling, support groups or respite care, the large
majority are women (individual counseling, 83 percent versus
17 percent; support groups, 73 percent versus 27 percent;and respite care, 71.5 percent versus 28.5 percent).

32

Caregiving Tasks
The care provided to people with Alzheimer’s or otherdementias is wide-ranging and in some instances allencompassing. Table 7 summarizes some of the mostcommon types of dementia care provided.
Though the care provided by family members of people
with Alzheimer’s or other dementias is somewhat similar
to the help provided by caregivers of people with otherconditions, dementia caregivers tend to provide more
extensive assistance. Family caregivers of people withdementia are more likely to monitor the health of people
living with dementia than are caregivers of people
without dementia (79 percent versus 66 percent). 294
Data from the 2011 National Health and Aging Trends
Study274,282 indicated that caregivers of people withdementia are more likely than caregivers of people
without dementia to provide help with self-care andmobility (85 percent versus 71 percent) and healthor medical care (63 percent versus 52 percent).
Seventy-seven percent of older adults with dementia
receive informal assistance with at least one ADL orhousehold activity in contrast to only 20 percent ofolder adults without dementia; nearly 40 percent ofpeople with dementia receive informal help with threeor more ADLs compared with 14 percent of people
without dementia. 280 Figure 7 illustrates how family
caregivers of people with dementia are more likely
than caregivers of other older people to assist
with ADLs. Over half of individuals with dementia(53 percent) receive assistance from family members
or other informal caregivers for ADLs compared with
11 percent of older adults without dementia. 286
In addition to assisting with ADLs, more caregivers ofpeople with Alzheimer’s or other dementias advocate
for these individuals with community agencies andcare providers (65 percent) and manage finances(68 percent) compared with caregivers of people
without dementia (46 percent and 50 percent,respectively). 286 More caregivers of people with
Alzheimer’s or other dementias arrange for outsideservices (46 percent) and communicate with healthcare professionals (80 percent) compared withcaregivers of people without dementia (27 percent
and 59 percent, respectively). 286 Caregivers of people
with dementia are more likely to coordinate healthcare for these individuals than caregivers of people
without dementia (86 percent versus 72 percent). 282
One in five caregivers of people with Alzheimer’s orother dementias (22 percent) report problems dealing
with a bank or credit union when helping to manage
the finances of people living with dementia, comparedwith 9 percent of caregivers of people without
dementia. 286 Caring for a person with dementia

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

FIGURE 7

Proportion of Caregivers of People with Alzheimer’s or Other Dementias Versus Caregivers of
Other Older People Who Provide Help with Specific Activities of Daily Living, United States, 2015
Percentage
50

Caregivers of people with Alzheimer’s or other dementias

45%

Caregivers of other older people

43%
38%

40

34%

33%

30%

30

23%
20

32%

32%
25%

20%
12%

10

0
Activity

Getting in andout of beds
and chairs

Getting
dressedBathing or
showering

Feeding

Getting toand from
the toilet

Dealing withincontinence

Created from data from the National Alliance for Caregiving and AARP. 286

also means managing symptoms that caregivers ofpeople with other diseases may not face, such asneuropsychiatric symptoms (for example, anxiety, apathy
and lack of inhibition) and severe behavioral problems.
Family caregivers of people with Alzheimer’s or otherdementias are more likely than family caregivers ofpeople without dementia to help with emotional ormental health problems (41 percent versus 16 percent)and behavioral issues (15 percent versus 4 percent). 286
When a person with Alzheimer’s or another dementia
moves to an assisted living residence or a nursing home,
the help provided by his or her family caregiver usuallychanges from the comprehensive care summarized inTable 7 to providing emotional support, interactingwith facility staff and advocating for appropriate care.
However, some family caregivers continue to help withbathing, dressing and other ADLs. 295-297
Duration of Caregiving
Eighty-six percent of dementia caregivers have provided
care and assistance for at least the past year, according
to the national 2014 Alzheimer’s Association Womenand Alzheimer’s Poll. A14 According to another study, wellover half (57 percent) of family caregivers of people with
Alzheimer’s or other dementias in the community had
provided care for 4 or more years. 280 More than six in 10(63 percent) Alzheimer’s caregivers expect to continue

having care responsibilities for the next 5 years comparedwith less than half of caregivers of people without
dementia (49 percent). 286
Hours of Unpaid Care and Economic Value of Caregiving
In 2018, the 16.2 million family and other unpaid
caregivers of people with Alzheimer’s or other dementias
provided an estimated 18.5 billion hours of unpaid care.
This number represents an average of 21.9 hours ofcare per caregiver per week, or 1,139 hours of care per
caregiver per year. A15 With this care valued at $12.64 perhour, A16 the estimated economic value of care provided
by family and other unpaid caregivers of people withdementia across the United States was $233.9 billion in
2018. Table 8 (see pages 36-37) shows the total hoursof unpaid care as well as the value of care provided
by family and other unpaid caregivers for the UnitedStates and each state. Unpaid caregivers of people with
Alzheimer’s or other dementias provided care valued
at more than $4 billion in each of 21 states. Unpaid
caregivers in each of the four most populous states —California, Florida, New York and Texas — provided carevalued at more than $14 billion. A longitudinal studyof the monetary value of family caregiving for people
with dementia found that the overall value of dailyfamily care increased 18 percent with each additional
year of providing care, and that the value of this care

Caregiving

33

increased as the people living with dementia’s cognitive
abilities declined. 298-299 Additional research is needed toestimate the future value of family care for people with
Alzheimer’s disease and other dementias as the U.S.
population continues to age.
Apart from its long duration, the immediate demands ofcaregiving are also time-intensive. Caregivers of people
with dementia report providing 27 hours more care
per month on average (92 hours versus 65 hours) thancaregivers of people without dementia, with over half
providing more than 21 hours of care per week. 282,294
A 2017 national poll found that 42 percent of caregiversof people with dementia provided care for an average of
9 hours per day. 289 An analysis of national caregiving
trends from 1999 to 2015 found that the average
hours of care per week increased from 45 in 1999 to
48 in 2015 for dementia caregivers; over the same time
period, weekly hours of care decreased for non-dementia
caregivers from 34 to 24.300
Impact of Alzheimer’s Caregiving
Caring for a person with Alzheimer’s or anotherdementia poses special challenges. For example, people
in the middle to later stages of Alzheimer’s experiencelosses in judgment, orientation, and the ability tounderstand and communicate effectively. Family
caregivers must often help people with Alzheimer’s
manage these issues. The personality and behavior of aperson with Alzheimer’s are affected as well, and thesechanges are often among the most challenging forfamily caregivers. 301-303 Individuals with Alzheimer’s also
require increasing levels of supervision and personalcare as the disease progresses. As symptoms worsen, thecare required of family members can result in increased
emotional stress and depression; new or exacerbatedhealth problems; and depleted income and finances due
in part to disruptions in employment and paying for
health care or other services for themselves and people
living with dementia. 304-312
Caregiver Emotional and Social Well-Being
The intimacy, shared experiences and memories thatare often part of the relationship between a caregiverand person living with dementia may also be threatened
due to the memory loss, functional impairment andpsychiatric/behavioral disturbances that can accompany
the progression of Alzheimer’s. However, in a nationalpoll, 45 percent of respondents indicated that caring
for someone with dementia was very rewarding. 289
Although caregivers report positive feelings aboutcaregiving, such as family togetherness and thesatisfaction of helping others, A14,313-318 theyalso frequently report higher levels of stress.

34

Stress• More dementia caregivers were classified as having ahigh level of burden than caregivers of people without
dementia (46 percent versus 38 percent) based on
the 2015 National Alliance for Caregiving/American
Association of Retired Persons (NAC/AARP) survey’s
Burden of Care Index, which combined the number ofhours of care and the number of ADL tasks performedby the caregiver into a single numerical score. 286• Compared with caregivers of people without
dementia, twice as many caregivers of those withdementia indicate substantial emotional, financial
and physical difficulties. 282• Fifty-nine percent of family caregivers of people with
Alzheimer’s or other dementias rated the emotional
stress of caregiving as high or very high (Figure 8). A14
Nearly half of dementia caregivers (49 percent)indicate that providing help is highly stressfulcompared with 35 percent of caregivers of people
without dementia. 286
Depression and Mental Health• Approximately 30 to 40 percent of family caregiversof people with dementia suffer from depression,compared with 5 to 17 percent of non-caregivers ofsimilar ages.319-324 A recent meta-analysis reported thatcaregivers of people with dementia were significantly
more likely to experience depression and anxiety thannon-caregivers. 293• The prevalence of depression (see above) is higher
among dementia caregivers than other caregivers,
such as those who provide help to individuals withschizophrenia (20 percent) or stroke (19 percent).323-325• Depression risk increases as cognitive impairment
worsens in the person with dementia.326• In a meta-analysis, type of relationship was thestrongest predictor of caregiver depression; caregiversof spouses had two and a half times higher odds of
having depression than caregivers of people who were
not spouses.323• The prevalence of anxiety among dementia caregivers
is 44 percent, which is higher than among caregiversof people with stroke (31 percent), for example.323-324• Caregivers of individuals with Alzheimer’s report more
subjective cognitive problems (for example, problems
with memory) and experience greater declines incognition over time than non-caregivers matched onage and other characteristics.327-328• Caring for people with dementia who have four ormore behavioral and psychological symptoms (forexample, aggression, self-harm and wandering)
represents a “tipping point” for family caregivers, as
they are more likely to report clinically meaningfuldepression and burden.329

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

Strain• Caregivers of people with Alzheimer’s or otherdementias were twice as likely as caregivers ofindividuals without dementia (22 percent comparedwith 11 percent) to report that completing medical/
nursing-related tasks (for example, injections, tube
feedings and catheter/colostomy care) was difficult. 294• Half of caregivers (51 percent) of people with
Alzheimer’s or another dementia indicate having
no experience performing medical/nursing-related
tasks,294 and they often lack the information or
resources necessary to manage complex medication
regimens.330-333• According to the 2014 Alzheimer’s Association poll ofcaregivers, respondents often believed they had nochoice in taking on the role of caregiver. A14• The poll also found that more than half of women withchildren under age 18 felt that caregiving for someone
with Alzheimer’s was more challenging than caring forchildren (53 percent). A14• Many caregivers of people with Alzheimer’s or otherdementias provide help alone. Forty-one percent
of dementia caregivers in the 2014 Alzheimer’s
Association poll reported that no one else provided
unpaid assistance. A14• A population-based sample of caregivers found that
although dementia caregivers indicated greater
strain than non-dementia caregivers, no substantial
differences in strain between white and black/African
American dementia caregivers were evident.334
Stress of Care Transitions• Admitting a relative to a residential care facility has
mixed effects on the emotional and psychologicalwell-being of family caregivers. Some studies suggestthat distress remains unchanged or even increases
after a relative is admitted to a residential care facility,
but other studies have found that distress declines
following admission. 297,335-336• The demands of caregiving may intensify as people
with dementia approach the end of life. 337 In the year
before the death of the person living with dementia,
59 percent of caregivers felt they were “on duty”
24 hours a day, and many felt that caregiving during
this time was extremely stressful. 338 The same
study found that 72 percent of family caregivers
experienced relief when the person with Alzheimer’sor another dementia died. 338
Caregiver Physical Health
For some caregivers, the demands of caregiving may
cause declines in their own health. Evidence suggeststhat the stress of providing dementia care increases
caregivers’ susceptibility to disease and healthcomplications. 339 As shown in Figure 8, 38 percent

FIGURE 8

Proportion of Caregivers of People with Alzheimer’sor Other Dementias Who Report High to Very High
Emotional and Physical Stress Due to Caregiving
Percentage

Not high tosomewhat highHigh to very high

75
62%

59%
50

41%

38%

25

0
StressEmotional stressof caregiving

Physical stressof caregiving

Created from data from the Alzheimer’s Association. A14of Alzheimer’s and other dementia caregivers indicatethat the physical stress of caregiving is high to veryhigh. A14 Building on this, a recent analysis found that
29 percent of caregivers of people with Alzheimer’sor other dementias report that providing care resultsin high physical strain compared with 17 percent ofcaregivers of people without dementia. 286 The distressassociated with caring for a relative with Alzheimer’s oranother dementia has also been shown to negatively
influence the quality of family caregivers’ sleep. 340-341
General HealthSeventy-four percent of caregivers of people with
Alzheimer’s or other dementias reported that they
were “somewhat concerned” to “very concerned”
about maintaining their own health since becoming a
caregiver. A14 Forty-two percent of caregivers of people
with Alzheimer’s or another dementia report that theirhealth is excellent or very good, which is lower thancaregivers of people without dementia (50 percent). 286
In addition, 35 percent of caregivers of people with
Alzheimer’s or another dementia report that their healthhas gotten worse due to care responsibilities comparedwith 19 percent of caregivers of people without
dementia. 286 A 2017 poll reported that 27 percent ofdementia caregivers delayed or did not do things theyshould for their own health. 289 Dementia caregivers
indicated lower health-related quality of life than noncaregivers and are more likely than non-caregivers orother caregivers to report that their health is fair orpoor.306,310,342-344 Data from the Health and Retirement
Study showed that dementia caregivers who provided

Caregiving

35

TABLE 8

Number of Caregivers of People with Alzheimer's or Other Dementias, Hours of Unpaid Care,
Economic Value of Unpaid Care and Higher Health Care Costs of Caregivers by State, 2018*
Number ofHigher Health Care

Caregivers

Hours of Unpaid Care

Value of Unpaid Care

Costs of Caregivers(in thousands)(in millions)(in millions of dollars)(in millions of dollars)†

Alabama

305

347$4,392$200

Alaska

33

38

479

33

Arizona

339

386

4,883

198

Arkansas

178

203

2,560

119

California

1,621

1,846

23,337

1,109

Colorado

252

287

3,631

155

Connecticut

178

202

2,559

158

Delaware

55

62

786

50

District of Columbia

29

33

415

31

Florida

1,141

1,299

16,419832

Georgia

533

607

7,678

317

Hawaii

65

74

941

43

Idaho

85

97

1,223

53

Illinois

588

670

8,471

440

Indiana

340

387

4,890

255

Iowa

136

155

1,961

101

Kansas

151

172

2,179

105

Kentucky

273

311

3,936

197

Louisiana

232

264

3,335

164

Maine

69

79

998

60

Maryland

293

334

4,224

228

Massachusetts

340

387

4,889

324

Michigan

517

589

7,444

376

Minnesota

255

291

3,677

205

Mississippi

207

236

2,979

142

Missouri

317

361

4,568

232

State

36

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

TABLE 8 (cont.)

Number of Caregivers of People with Alzheimer's or Other Dementias, Hours of Unpaid Care,
Economic Value of Unpaid Care and Higher Health Care Costs of Caregivers by State, 2018*
Number ofHigher Health Care

Caregivers

Hours of Unpaid Care

Value of Unpaid Care

Costs of Caregivers(in thousands)(in millions)(in millions of dollars)(in millions of dollars)†

Montana

50

57

$723

$37

Nebraska

83

94

1,190

63

Nevada

151

172

2,168

91

New Hampshire

68

77

974

59

New Jersey

448

511

6,455

359

New Mexico

108

123

1,552

70

New York

1,014

1,155

14,594895

North Carolina

473

538

6,806

311

North Dakota

30

35

437

27

Ohio

603

687

8,681

474

Oklahoma

224

256

3,230

154

Oregon

186

212

2,682

136

Pennsylvania

676

770

9,732

565

Rhode Island

53

61

769

46

South Carolina

313

357

4,511

206

South Dakota

38

44

552

31

Tennessee

439

500

6,324

291

Texas

1,429

1,627

20,570

903

Utah

155

177

2,235

84

Vermont

30

34

434

28

Virginia

465

529

6,693

317

Washington

348

396

5,011

249

West Virginia

106

121

1,527

90

Wisconsin

195

222

2,802

154

Wyoming

28

31

396

21

U.S. Total

16,25018,505$233,903$11,789

State*State totals may not add to the U.S. total due to rounding.
†Higher health care costs are the dollar amount difference between the weighted per capita

personal health care spending of caregivers and non-caregivers in each state. A17
Created from data from the 2009 BRFSS, U.S. Census Bureau, Centers for Medicare & Medicaid
Services, National Alliance for Caregiving, AARP and U.S. Department of Labor. A13, A15, A16, A17

Caregiving

37

FIGURE 9

Work-Related Changes Among Caregivers of People with Alzheimer’s or Other
Dementias Who Had Been Employed at Any Time Since They Began Caregiving
Percentage
60

Caregivers of people with Alzheimer’s or other dementias

Caregivers of other people

57%

50

47%

40
30
18%

20

13%

16%

14%
9%

10

5%

8%

4%

7%

7%

7%
2%

6%

4%

0
Changes

Went in late,left early or
took time off

Went from fullto part-time or
cut back hours

Gave upworking entirely
Took a leaveof absence

Received a warning
about performance/
attendanceTurned down
a promotion

Retiredearly
Lost any
benefits

Created from data from the National Alliance for Caregiving and AARP. 286

care to spouses were much more likely (41 percent
increased odds) than other spousal caregivers of similar
age to become increasingly frail during the time between
becoming a caregiver and their spouse’s death.345 Other
studies, however, suggest that caregiving tasks have thepositive effect of keeping older caregivers more physically
active than non-caregivers.346
Physiological Changes
The chronic stress of caregiving may be associatedwith physiological changes that could increase therisk of developing chronic conditions. For example,
several studies found that under certain circumstances
some Alzheimer’s caregivers were more likely to haveelevated biomarkers of cardiovascular disease risk andimpaired kidney function risk than those who were notcaregivers.347-352
Caregivers of a spouse with Alzheimer’s or anotherdementia are more likely than married non-caregivers
to have physiological changes that may reflect
declining physical health, including high levels of stresshormones,353 impaired immune function,304,354 slow woundhealing,355 coronary heart disease,356 impaired functionof the endothelium (the inner lining of blood vessels) andincreased incidence of hypertension.304,353-360 However,38

reviews of studies examining the association between
caregiving and biomarkers of stress and inflammation(e.g., cortisol) found few consistent results, suggesting theneed for greater work in this area.
Health Care
The physical and emotional impact of dementia caregiving
is estimated to have resulted in $11.8 billion in health carecosts in the United States in 2018. A17 Table 8 (pages 36-37)
shows the estimated higher health care costs for caregiversof people with Alzheimer’s or other dementias in eachstate. In separate studies, hospitalization and emergency
department visits were more likely for dementia caregivers
who helped care for people who were depressed, had low
functional status or had behavioral disturbances.361-362
Increased depressive symptoms among caregivers overtime are also linked to more frequent doctor visits, a higher
number of outpatient tests and procedures, and greateruse of over-the-counter and prescription medications.362
Mortality
The health of a person with dementia may also affect the
caregiver’s risk of dying, although studies have reported
mixed findings.363 In one study, caregivers of spouses who
were hospitalized and had dementia in their medical records
were more likely to die in the following year than caregivers

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

TABLE 9Type and Focus of Caregiver Interventions
Type

Focus

Case management

Provides assessment, information, planning, referral, care coordination and/or advocacy for family caregivers.

Psychoeducational

Include a structured program that provides information about the disease, resources and services, and about

approaches

how to expand skills to effectively respond to symptoms of the disease (that is, cognitive impairment, behavioral
symptoms and care-related needs). Include lectures, discussions and written materials and are led by professionals
with specialized training.

Counseling

Aims to resolve pre-existing personal problems that complicate caregiving to reduce conflicts between caregivers
and care recipients and/or improve family functioning.

Support groups

Are less structured than psychoeducational or psychotherapeutic interventions. Support groups provide caregivers
the opportunity to share personal feelings and concerns to overcome feelings of social isolation.

RespiteProvides planned, temporary relief for the caregiver through the provision of substitute care; examples include
adult day services and in-home or institutional respite for a certain number of weekly hours.

Psychotherapeutic

Involve the establishment of a therapeutic relationship between the caregiver and a professional therapist (forapproaches

example, cognitive-behavioral therapy for caregivers to focus on identifying and modifying beliefs related toemotional distress, developing new behaviors to deal with caregiving demands, and fostering activities that canpromote caregiver well-being).

Multicomponent

Are characterized by intensive support strategies that combine multiple forms of interventions, such as education,

approaches

support and respite into a single, long-term service (often provided for 12 months or more).

Created from data from Pinquart et al. and Gaugler et al. 308,367

whose spouses were hospitalized but did not have dementia(after accounting for differences in caregiver age).364
Another study found that caregivers who perceive higher
strain due to care responsibilities are at higher risk fordeath than caregivers who perceive little or no strain.365
Caregiver Employment and Finances
Six in 10 caregivers of people with Alzheimer’s or anotherdementia were employed in the past year while providingcare.286 These individuals worked an average of 35 hours
per week while caregiving.286 Among people who were
employed in the past year while providing care to someone
with Alzheimer’s or another dementia, 57 percent
reported sometimes needing to go in late or leave earlycompared with 47 percent of non-dementia caregivers.
Eighteen percent of dementia caregivers reduced theirwork hours due to care responsibilities, compared with
13 percent of non-dementia caregivers. Other workrelated changes among dementia and non-dementia
caregivers who had been employed in the past year are
summarized in Figure 9.286
In 2018, dementia caregivers reported nearly twice theaverage out-of-pocket costs (e.g., medical, personal careand household expenses for the person with dementia;
personal expenses and respite services for the caregiver)of non-dementia caregivers ($11,233 versus $6,075).278,366
Data from the 2016 Alzheimer’s Association Family Impact
of Alzheimer’s Survey reported in 2016 Alzheimer’s Disease
Facts and Figures indicated that among care contributors(a friend or relative who paid for dementia expenses and/or provided care for someone with dementia at least
once a month in the prior year), 48 percent cut back on
spending and 43 percent cut back on saving due to theout-of-pocket costs of providing help to someone withdementia.311 Due to care responsibilities in the year prior to
the survey, close to four in 10 care contributors indicatedthat the “food they bought just didn’t last, and they didn’t
have money to get more,” and three in 10 ate less becauseof care-related costs.311
Interventions Designed to Assist Caregivers
For more than 30 years, strategies to support family
caregivers of people with Alzheimer’s have been developedand evaluated. The types and focus of these strategies (often
called “interventions”) are summarized in Table 9.308,367
In general, the goal of interventions is to improve
the health and well-being of dementia caregivers byrelieving the negative aspects of caregiving. Some also
aim to delay nursing home admission of the person with

Caregiving

39dementia by providing caregivers with skills and resources(emotional, social, psychological and/or technological)
to continue helping their relatives or friends at home.
Specific approaches used in various interventions include
providing education to caregivers, helping caregivers
manage dementia-related symptoms, improving social
support for caregivers and providing caregivers withrespite from caregiving duties.
According to a publication on dementia caregiverinterventions that reviewed seven meta-analyses and17 systematic reviews of randomized controlled trials,
the following characteristics distinguish interventions
that are effective: family caregivers are actively involvedin the intervention, in contrast to passively receiving
information; the intervention is tailored and flexible tomeet the changing needs of family caregivers during
the course of a relative’s dementia; and the intervention
meets the needs not only of caregivers, but of people
living with dementia as well.368 A 2012 report identified
44 interventions in the United States that have benefits
for individuals with Alzheimer’s or other dementias as wellas their family caregivers based on randomized, controlled
studies, and more such evaluations are emerging eachyear.369-370 A meta-analysis examined the components ofdementia caregiver interventions that are most beneficial.
Interventions that address caregiving competency initially,
gradually address the care needs of the person withdementia, and offer emotional support for loss and grief
only when needed appeared most effective in reducing
depression among dementia caregivers.371
Interventions for dementia caregivers that havedemonstrated efficacy in scientific evaluations have been
gradually implemented in the community, but are still
not widespread or available to all family caregivers.372-386
When interventions are implemented, they are generally
successful at improving how caregiver services aredelivered, and have the potential to reach a large numberof families while also helping caregivers cope with their
responsibilities.387 In one example, researchers utilized
an "agile implementation" process to more rapidly select,
localize, evaluate and replicate a collaborative care modelfor dementia care. This care model has successfully
operated for nearly a decade in an Indianapolis healthcare system.388 Other efforts have attempted to broaden
the reach and accessibility of interventions for dementia
caregivers through the use of technologies (for instance,
video-phone delivery and online training) and haveshown some success.389-396 The 2017 National Research
Summit on Care, Services, and Supports for Persons
with Dementia and Their Caregivers convened many ofthe leading experts in research, practice and policy indementia care and identified similar research priorities
in these areas.397

40

Because caregivers and the settings in which they provide
care are diverse, more studies are required to define whichinterventions are most effective for specific situations andhow these interventions are successful.398-401 Improved
tools and measures to personalize services for caregivers
to maximize their benefits represent an emerging areaof research.402-407 More studies are also needed to adapt
proven interventions or develop new intervention
approaches for families from different racial, ethnic andsocioeconomic backgrounds and from different geographic
settings. Additional research on interventions focused on
disease stages is also needed, as well as research on specificintervention needs for LGBT caregivers.281,408-420

Paid Caregivers
Direct-Care Workers for People with Alzheimer’sor Other Dementias
Direct-care workers, such as nurse aides, home healthaides, and personal and home care aides, provide mostof the paid long-term care to older adults living at
home or in residential settings.421-422 In nursing homes,
nursing assistants make up the majority of staff who
work with cognitively impaired residents.423-425 Nursing
assistants help with bathing, dressing, housekeeping, foodpreparation and other activities. Most nursing assistants
are women, and they come from increasingly diverse
ethnic, racial and geographic backgrounds.
Direct-care workers have difficult jobs, and they may
not receive the training necessary to provide dementia
care.424,426-428 Turnover rates are high among directcare workers, and recruitment and retention are
persistent challenges.427,429 Inadequate education andchallenging work environments have also contributed
to higher turnover rates among nursing staff acrosscare environments.430 Studies have shown that staff
training programs to improve the quality of dementia
care in nursing homes and hospitals have modest
benefits.426,431-435 The National Academies of Sciences,
Engineering, and Medicine have recommended thatfederal requirements for general direct-care worker
training be increased from 75 hours to 120 hours, andthat instruction content focus more on knowledge andskills related to caring for individuals with Alzheimer’s andother dementias.427-428
Shortage of Geriatric Health Care Professionals
Professionals who may receive special training in caring
for older adults include physicians, nurse practitioners,
registered nurses, social workers, pharmacists, physician
assistants and case workers.427 It is estimated that theUnited States has approximately half the number ofcertified geriatricians that it currently needs.436 As of 2016,
there were 7,293 certified geriatricians in the United States,

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

or one geriatrician for every 1,924 Americans age 65 orolder in need of care.437 The American Geriatrics Society
estimates that, due to the increase in vulnerable older
Americans who require geriatric care, an additional 23,750
geriatricians should be trained between now and 2030 tomeet the needs of an aging U.S. population.438 There were234,000 nurse practitioners in the United States in 2016.
Nine percent of nurse practitioners had special expertisein gerontological care, and 4 percent of nurse practitioners
had expertise in gerontological care with a primarycare focus.439 Less than 1 percent of registered nurses,
physician assistants and pharmacists identify themselves as
specializing in geriatrics.427 Although 73 percent of social
workers serve clients age 55 and older, only 4 percent haveformal certification in geriatric social work.427 Furthermore,
the overall aging of the long-term care workforce may
affect the number of paid caregivers.430
Enhancing Health Care for Family Caregivers
There is a growing consensus that professionals caring
for people with Alzheimer’s and other dementias should
acknowledge the role family caregivers play in facilitating
the treatment of dementia, and that professionals should
assess the well-being of family caregivers to improve overall
disease management of the person with dementia.440-444
Recognizing that the complex care challenges of people
with dementia also require interprofessional collaborationand education,445-446 ongoing efforts have attempted tointegrate innovative care management practices withtraditional primary care for people with dementia.447-450
One example involves a skilled professional who serves as
the care manager of the person with dementia. The caremanager collaborates with primary care physicians andnurse practitioners to develop personalized care plans.
These plans can provide support to family caregivers, help
people with dementia manage care transitions (for example,
a change in care provider or site of care), and ensure theperson with dementia has access to appropriate communitybased services. Other models include addressing the needsof family caregivers simultaneously with comprehensive
disease management of the people living with dementia
to improve the quality of life of both family caregivers
and people with dementia in the community.451 Several
evaluations have suggested that such approaches haveconsiderable potential for improving outcomes for people
with dementia and their family caregivers (for example,
delayed nursing home admission and reduction in caregiver
distress).452-459 Current research is attempting to determine
the feasibility of these models beyond the specialty settings
in which they currently operate.460-461

number of recommendations to refocus national healthcare reform efforts from models of care that center on
the patient (person-centered care) to models of carethat also explicitly engage and support the patient’s
family (person- and family-centered care).462 These
service models recognize the important role family
members play in providing care and incorporate family
caregivers during the delivery of health care to theirrelatives with dementia. Furthermore, these models
encourage health care providers to deliver evidencebased services and support to both caregivers andpeople living with dementia.462-463
In January 2017, Medicare began reimbursing physicians,
physician assistants, nurse practitioners and clinicalnurse specialists for health care visits that result in acomprehensive dementia care plan. Comprehensive careplanning is a core element of effective dementia caremanagement and can result in the delivery of services
that potentially enhance quality of life for people withdementia and their caregivers. Effective care planningfor people living with dementia should include family
caregivers. The Alzheimer’s Association has developed
a care planning kit (alz.org/careplanning) to help guideproviders to deliver effective care planning for people
with dementia and their family caregivers.

Trends in Dementia Caregiving
There is some indication that families are better managing
the care they provide to relatives with dementia than in
the past. From 1999 to 2015, dementia caregivers weresignificantly less likely to report physical difficulties (from30 percent in 1999 to 17 percent in 2015) and financial
difficulties (from 22 percent in 1999 to 9 percent in2015) related to care provision. In addition, use of respite
care by dementia caregivers increased substantially (from13 percent in 1999 to 27 percent in 2015).300 However,as noted above, more work is needed to ensure thatinterventions for dementia caregivers are available andaccessible to those who need them. A 2016 study of theOlder Americans Act’s National Family Caregiver Support
Program found that over half (52 percent) of Area
Agencies on Aging did not offer evidence-based family
caregiver interventions.464

In 2016, the National Academies of Sciences,
Engineering, and Medicine released Families Caring
for an Aging America, a seminal report that includes a

Caregiving

41

USE ANDCOSTS OFHEALTH CARE,
LONG-TERMCARE ANDHOSPICE$290
BILLIONis the estimated amount
Alzheimer's and otherdementias will costin health care, longterm care and hospicein 2019.

The costs of health care and long-term care forindividuals with Alzheimer’s or other dementias aresubstantial, and dementia is one of the costliest
conditions to society. 465 Total payments in 2019(in 2019 dollars) for all individuals with Alzheimer’sor other dementias are estimated at $290 billion(Figure 10). Medicare and Medicaid are expected tocover $195 billion, or 67 percent, of the total healthcare and long-term care payments for people with
Alzheimer’s or other dementias. Out-of-pocket
spending is expected to be $63 billion, or 22 percent
of total payments. A18 Throughout the rest of thissection, all costs are reported in 2018 dollars
unless otherwise indicated. A19

Total Cost of Health Care and Long-Term Care
Table 10 reports the average annual per-person
payments for health care and long-term care services
for Medicare beneficiaries age 65 and older with andwithout Alzheimer’s or other dementias. Total perperson health care and long-term care payments in2018 from all sources for Medicare beneficiaries with
Alzheimer’s or other dementias were over three times
as great as payments for other Medicare beneficiaries inthe same age group ($48,977 per person for those withdementia compared with $13,976 per person for those
without dementia). A20,466
Twenty-seven percent of older individuals with
Alzheimer’s or other dementias who have Medicare also

have Medicaid coverage, compared with 11 percent
of individuals without dementia.466 Medicaid pays fornursing home and other long-term care services forsome people with very low income and low assets,
and the high use of these services by people withdementia translates into high costs to Medicaid. Averageannual Medicaid payments per person for Medicare
beneficiaries with Alzheimer’s or other dementias($8,565) were 23 times as great as average Medicaid
payments for Medicare beneficiaries without Alzheimer’sor other dementias ($365) (Table 10).466
Despite these and other sources of financial assistance,
individuals with Alzheimer’s or other dementias still
incur high out-of-pocket costs. These costs are for
Medicare and other health insurance premiums and for
deductibles, copayments and services not covered by
Medicare, Medicaid or additional sources of support.
On average, Medicare beneficiaries age 65 and older
with Alzheimer’s or other dementias paid $10,798 outof pocket annually for health care and long-term careservices not covered by other sources (Table 10).466

TABLE 10

Average Annual Per-Person Payments by Payment
Source for Health Care and Long-Term Care Services,
Medicare Beneficiaries Age 65 and Older, with andwithout Alzheimer’s or Other Dementias, in 2018 Dollars
Beneficiaries

FIGURE 10Distribution of Aggregate Costs of Care by Payment
Source for Americans Age 65 and Older with Alzheimer’sor Other Dementias, 2019*
Total cost:$290 Billion (B)Medicare$146 B, 51%
Medicaid$49 B, 17%
Out of pocket$63 B, 22%
Other$32 B, 11%*Data are in 2019 dollars.
Created from data from the Lewin Model. A18 “Other” payment

Beneficiaries

with Alzheimer’s

without

or Other

Alzheimer’s or

Dementias

Other Dementias

Medicare$24,598$7,561

Medicaid

8,565

365

381

382

Health maintenance organization

1,261

1,544

Private insurance

2,253

1,422

937

242

Out of pocket

10,7982,336

Total*

48,977

13,976

Payment Source

Uncompensated

Other payer*Payments from sources do not equal total payments exactly due tothe effects of population weighting. Payments for all beneficiaries
with Alzheimer’s or other dementias include payments forcommunity-dwelling and facility-dwelling beneficiaries.

sources include private insurance, health maintenance organizations,

Created from unpublished data from the Medicare Current

other managed care organizations and uncompensated care.

Beneficiary Survey for 2011.466

Use and Costs of Health Care, Long-Term Care and Hospice

43

FIGURE 11

Reasons for Hospitalization of Individuals with Alzheimer’s Dementia:
Percentage of Hospitalized Individuals by Admitting Diagnosis*
Percentage
30

26%

25
20

17%

15
9%

10
5

6%

5%

Pneumonia

Delirium, mental
status change

0
Reasons for
hospitalization

Syncope, fall
and trauma

Ischemic heartdiseaseGastrointestinal
disease*All hospitalizations for individuals with a clinical diagnosis of probable or possible Alzheimer’s were used to calculate percentages.
The remaining 37 percent of hospitalizations were due to other reasons.
Created from data from Rudolph et al.474

Researchers have evaluated the additional or“incremental” health care, residential long-termcare and family caregiving costs of dementia (that is,the costs specifically attributed to dementia whencomparing people with and without dementia whohave the same coexisting medical conditions anddemographic characteristics). 277,465,467-468 One groupof researchers found that the incremental healthcare and nursing home costs for those with dementia
were $28,501 per person per year in 2010 dollars($35,512 in 2018 dollars). A21,465 Another group of
researchers found that the incremental lifetime costof Alzheimer’s dementia was substantially higher for
women than men, due to a greater lifetime risk ofdeveloping Alzheimer’s dementia (see Prevalence section,
page 16).469 Additionally, because women are more likely
to be widowed and living in poverty, the incremental
Medicaid costs associated with Alzheimer’s dementia
were 70 percent higher for women than men. A thirdgroup of researchers found that the lifetime cost ofcare, including out-of-pocket, Medicare and Medicaid
expenditures, and the value of informal caregiving,was $321,780 per person with Alzheimer’s dementia in2015 dollars ($350,174 in 2018 dollars). 277 Comparedwith an individual without Alzheimer’s dementia, theincremental lifetime cost of Alzheimer’s dementia was$184,500 ($199,871 in 2018 dollars). Another group of
researchers found that community-dwelling individualsage 65 and older with Alzheimer’s dementia had $1,101

44(in 2012 dollars; $1,284 in 2018 dollars) higher out-ofpocket health care spending than individuals without
Alzheimer’s dementia, after controlling for differencesin patient characteristics.470 The largest portion ofthis difference was due to higher spending on homehealth care and prescription drugs. Furthermore,individuals with Alzheimer’s dementia spent 12 percentof their income on out-of-pocket health care services
compared with 7 percent for individuals without
Alzheimer’s dementia.
Other researchers compared end-of-life costs forindividuals with and without dementia and found thatthe total cost in the last 5 years of life was $287,038 perperson for individuals with dementia in 2010 dollars and$183,001 per person for individuals without dementia($357,650 and $228,020, respectively, in 2018 dollars), a
difference of 57 percent.471 Additionally, out-of-pocket
costs represented a substantially larger proportion of total
wealth for those with dementia than for people without
dementia (32 percent versus 11 percent).

Use and Costs of Health Care Services
Use of Health Care Services
People with Alzheimer’s or other dementias have twice
as many hospital stays per year as other older people.472
Moreover, the use of health care services by people withother serious medical conditions is strongly affectedby the presence or absence of dementia. In particular,

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

people with coronary artery disease, diabetes, chronic
kidney disease, chronic obstructive pulmonary disease(COPD), stroke or cancer who also have Alzheimer’s orother dementias have higher use and costs of health careservices than people with these medical conditions but nocoexisting dementia.

TABLE 11

Average Annual Per-Person Payments by Type of Service
for Health Care and Long-Term Care Services, Medicare
Beneficiaries Age 65 and Older, with and without
Alzheimer’s or Other Dementias, in 2018 Dollars
Beneficiaries

In addition to having more hospital stays, older people
with Alzheimer’s or other dementias have more skilled
nursing facility stays and home health care visits per year
than other older people.
• Hospital. There are 538 hospital stays per 1,000
Medicare beneficiaries age 65 and older with Alzheimer’sor other dementias compared with 266 hospital stays
per 1,000 Medicare beneficiaries age 65 and older
without these conditions.472 A person with dementia in
2012 had, on average, 23 inpatient days — defined asdays in a hospital or skilled nursing facility — comparedwith 5 days for the Medicare population as a whole.473
The most common reasons for hospitalization of people
with Alzheimer’s dementia are syncope (fainting), fall andtrauma (26 percent); ischemic heart disease (17 percent);
and gastrointestinal disease (9 percent) (Figure 11).474
In a study of inpatient hospitalizations of adults age
60 and older, those with Alzheimer’s were at 7 percent
greater risk of dying during the hospital stay and stayednearly a day longer than individuals without Alzheimer’s
dementia.475 Among Medicare beneficiaries with
Alzheimer’s or other dementias, 21 percent of hospital
stays are followed by a readmission within 30 days.466(While not directly comparable, one study of a portionof Medicare beneficiaries found an overall 30-day
readmission rate of 18 percent.476)• Emergency department. There are 1,471 emergency
department visits per 1,000 Medicare beneficiaries
with Alzheimer’s or other dementias per year.477 (While
not directly comparable, there were 640 emergency
department visits per 1,000 Medicare beneficiaries per
year in a review of utilization patterns of a subset ofMedicare beneficiaries.476)• Skilled nursing facility. Skilled nursing facilities provide
direct medical care that is performed or supervised byregistered nurses, such as giving intravenous fluids,changing dressings and administering tube feedings.478
There are 283 skilled nursing facility stays per 1,000
beneficiaries with Alzheimer’s or other dementias per year
compared with 73 stays per 1,000 beneficiaries without
these conditions — a rate nearly four times as great.472• Home health care. Twenty-five percent of Medicare
beneficiaries age 65 and older with Alzheimer’s orother dementias have at least one home health carevisit during the year, compared with 10 percent ofMedicare beneficiaries age 65 and older without
Alzheimer’s or other dementias.472

Beneficiaries

with Alzheimer’s

without

or Other

Alzheimer’s or

Dementias

Other Dementias

Inpatient hospital$11,306$3,652

Medical provider*

5,728

3,568

Skilled nursing facility

6,977

477

Nursing home

15,984774

Hospice

2,060

156

2,578

374

3,503

3,005

Service

Home health care
Prescription medications†*“Medical provider” includes physician, other medical provider andlaboratory services, and medical equipment and supplies.
†

Information on payments for prescription medications is only

available for people who were living in the community, that is, notin a nursing home or an assisted living facility.
Created from unpublished data from the Medicare Current
Beneficiary Survey for 2011.466

Costs of Health Care Services
Average per-person payments for health care services(hospital, physician and other medical provider, nursing
home, skilled nursing facility, hospice and home healthcare) and prescription medications were higher for
Medicare beneficiaries with Alzheimer’s or otherdementias than for other Medicare beneficiaries in thesame age group (Table 11).466
Use and Costs of Health Care Service by State
Substantial geographic variation exists in health careutilization and Medicare payments by individuals with
Alzheimer’s or other dementias (Table 12, see page 46).
Emergency department visits range from 1,030 per
1,000 beneficiaries in South Dakota to 1,758 per
1,000 beneficiaries in West Virginia, and the percentage
of hospital stays followed by hospital readmission within
30 days ranges from 14.7 percent in Utah and Idaho
to 25.2 percent in the District of Columbia. Medicare
spending per capita ranges from $15,405 in North
Dakota to $32,006 in Nevada (in 2018 dollars).477

Use and Costs of Health Care, Long-Term Care and Hospice45

TABLE 12Emergency Department (ED) Visits, Hospital Readmissions and Per Capita Medicare Payments
in 2018 Dollars by Medicare Beneficiaries with Alzheimer's or Other Dementias by State, 2015
Percentage of
Number ofPercentage of

Hospital Stays

Number of

Hospital Stays

ED Visits

Followed by

Per Capita

ED Visits

Followed byper 1,000

Readmission

Medicareper 1,000

Readmission

MedicareBeneficiaries

within 30 Days

Payments

Beneficiaries

within 30 Days

Payments

Alabama

1,366

20.7

$22,075

Montana

1,230

16.3

$17,455

Alaska

1,398

18.2

22,062

Nebraska

1,092

16.8

20,251

Arizona

1,441

19.1

24,356

Nevada

1,592

23.0

32,006

Arkansas

1,510

21.2

21,782

New Hampshire

1,366

19.2

22,623

California

1,428

21.7

30,665

New Jersey

1,423

22.4

30,054

Colorado

1,383

16.9

21,840

New Mexico

1,421

18.9

21,920Connecticut

1,483

21.2

27,290

New York

1,384

23.2

29,385

Delaware

1,576

20.7

28,522

North Carolina

1,615

20.2

21,901

District of Columbia

1,737

25.2

30,291

North Dakota

1,059

16.1

15,405

Florida

1,482

23.1

28,636

Ohio

1,519

21.5

25,101

Georgia

1,528

21.1

23,698Oklahoma

1,625

20.7

25,175

Hawaii

1,074

16.1

17,965

Oregon

1,482

18.0

19,521

Idaho

1,305

14.7

19,478Pennsylvania

1,409

20.8

25,723Illinois

1,528

21.9

27,193

Rhode Island

1,608

22.2

26,358

Indiana

1,419

19.6

24,969South Carolina

1,506

20.5

23,674

Iowa

1,243

16.8

17,265South Dakota

1,030

15.9

17,731

Kansas

1,308

18.0

21,394Tennessee

1,565

21.2

23,695

Kentucky

1,635

22.2

23,703

Texas

1,451

20.5

29,897

Louisiana

1,703

21.2

28,935

Utah

1,129

14.7

21,051

Maine

1,574

17.9

19,827

Vermont

1,455

18.8

21,071Maryland

1,509

22.1

29,011

Virginia

1,567

21.7

22,592Massachusetts

1,504

22.5

28,996

Washington

1,415

17.7

20,674

Michigan

1,598

23.4

27,244

West Virginia

1,758

22.4

23,669Minnesota

1,279

18.7

20,430

Wisconsin

1,382

18.5

20,083

Mississippi

1,685

22.2

26,758

Wyoming

1,344

16.0

19,142

Missouri

1,458

21.7

22,425

Average

1,471

21.3

25,937*

State

State

*The average per capita Medicare payments differ slightly from the figure in Table 10 due to different underlying sources of data.
Created from data from the U.S. Centers for Medicare & Medicaid Services.477

46Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

Per Capita

Use and Costs of Health Care Services Across theSpectrum of Cognitive Impairment
Health care costs increase with the presence of dementia.
In a population-based study of adults ages 70 to 89,
annual health care costs were significantly higher forindividuals with dementia than for those with either
mild cognitive impairment (MCI) or normal cognition.479
Annual health care costs for individuals with MCI were notsignificantly different, however, from costs for individuals
with normal cognition.
Several groups of researchers have found thatboth health care and prescription drug spending
are significantly higher in the year prior to
diagnosis,480-482 2 years prior to diagnosis,483 and 1 year
after diagnosis,480-481 compared with otherwise similar
individuals not diagnosed with Alzheimer’s or anotherdementia, although there are differences in thesources of increased spending. In one study, the largest
differences were in inpatient and post-acute care,481
while in another study the differences in spending
were primarily due to outpatient care, home care andmedical day services.482 In a third study, the differenceswere due to home health care, skilled nursing careand durable medical equipment.483 Additionally, twogroups of researchers have found that spending in theyear after diagnosis continued to be higher than for
individuals not diagnosed with the disease, by amounts
ranging from $9,333 in additional costs in 2011 dollars
based on individuals enrolled in a Medicare Advantage
Prescription Drug plan ($11,286 in 2018 dollars)480
to $17,852 in additional costs in 2014 dollars basedon individuals with Medicare fee-for-service coverage($19,848 in 2018 dollars).481 One group of researchers,
however, found no difference in health care spending inthe 2 years after diagnosis.483 One possible explanation
for the spike in health care costs in the year immediately
prior to and after diagnosis of Alzheimer’s or anotherdementia relates to delays in timely diagnosis. One groupof researchers has found that individuals with cognitive
decline who sought care from a specialist (that is, aneurologist, psychiatrist or geriatrician) had a shortertime to diagnosis of Alzheimer’s disease.484 Additionally,
individuals diagnosed with cognitive impairment by aspecialist had lower Medicare costs in the year after
receiving a diagnosis of Alzheimer’s dementia thanthose diagnosed by a non-specialist.
Impact of Alzheimer’s and Other Dementias on the
Use and Costs of Health Care in People with Coexisting
Medical Conditions
Medicare beneficiaries with Alzheimer’s or otherdementias are more likely than those without dementia
to have other chronic conditions.472 While 26 percent of

TABLE 13

Percentage of Medicare Beneficiaries Age 65 andOlder with Alzheimer's or Other Dementias Who
Have Specified Coexisting Conditions
Coexisting Condition

Percentage

Coronary artery disease38

Diabetes

37

Chronic kidney disease

29

Congestive heart failure

28

Chronic obstructive pulmonary disease

25

Stroke22

Cancer13

Created from unpublished data from the National 5% Sample
Medicare Fee-for-Service Beneficiaries for 2014.472

Medicare beneficiaries age 65 and older with Alzheimer’sor other dementias have five or more chronic conditions(including Alzheimer’s or other dementias), only 4 percent
of Medicare beneficiaries without Alzheimer’s or otherdementias have five or more chronic conditions.472 Table
13 reports the percentage of people with Alzheimer’sor other dementias who had certain coexisting medical
conditions. In 2014, the latest year for which information
is available, 38 percent of Medicare beneficiaries age
65 and older with dementia also had coronary arterydisease, 37 percent had diabetes, 29 percent had chronic
kidney disease, 28 percent had congestive heart failure and25 percent had chronic obstructive pulmonary disease.472
Medicare beneficiaries who have Alzheimer’s or otherdementias and a coexisting medical condition havehigher average per-person payments for most healthcare services than Medicare beneficiaries with thesame medical condition but without dementia. Table 14(see page 49) shows the average per-person Medicare
payments for seven specific medical conditions among
beneficiaries who have Alzheimer’s or other dementias
and beneficiaries who do not have Alzheimer’s or anotherdementia.472 Medicare beneficiaries with Alzheimer’sor other dementias had higher average per-person
payments in all categories except hospital care payments
for individuals with congestive heart failure.

Use and Costs of Long-Term Care Services
An estimated 70 percent of older adults with Alzheimer’sor other dementias live in the community, comparedwith 98 percent of older adults without Alzheimer’s or

Use and Costs of Health Care, Long-Term Care and Hospice47

other dementias.466 Of those with dementia who livein the community, 74 percent live with someone andthe remaining 26 percent live alone.466 As their diseaseprogresses, people with Alzheimer’s or other dementias
generally receive more care from family members andother unpaid caregivers. Many people with dementia also
receive paid services at home; in adult day centers, assisted
living facilities or nursing homes; or in more than one ofthese settings at different times during the often longcourse of the disease. The average costs of these services
increased moderately between 2017 and 2018 (assisted
living: from $45,000 to $48,000 per year485-486 and nursing
home care: from $85,775 to $89,297 per year for a semiprivate room and from $97,455 to $100,375 per year for a
private room485-486), and Medicaid is the only public programthat covers the long nursing home stays that most people
with dementia require in the late stages of their illnesses.
Use of Long-Term Care Services by Setting
Most people with Alzheimer’s or other dementias wholive at home receive unpaid help from family members
and friends, but some also receive paid home- andcommunity-based services, such as personal care
and adult day care. People with Alzheimer’s or otherdementias make up a large proportion of all elderly people
who receive adult day services and nursing home care.
• Adult day services. Thirty-one percent of individuals
using adult day services have Alzheimer’s or otherdementias.487 Overall, 69 percent of adult day service
programs offer specific programs for individuals with
Alzheimer’s or other dementias, and 14 percent of
adult day service centers primarily serve individuals
with Alzheimer’s or other dementias.488• Residential care facilities. Forty-two percent of residents
in residential care facilities (that is, housing that includes
services to assist with everyday activities, such as
medication management and meals), including assisted
living facilities, have Alzheimer’s or other dementias.489
Small residential care facilities (four to 25 beds) have alarger proportion of residents with Alzheimer’s or otherdementias than larger facilities (51 percent in facilities
with four to 25 beds compared with 44 percent infacilities with 26 to 50 beds and 39 percent in facilities
with more than 50 beds).489 Fifty-eight percent ofresidential care facilities offer programs for residents
with Alzheimer’s or other dementias.490• Nursing home care. Fifty percent of nursing
home residents in 2014 had Alzheimer’s or otherdementias,491 and 61 percent had moderate or severe
cognitive impairment.492 Nursing home admission
by age 80 is expected for 75 percent of people with
Alzheimer’s dementia compared with only 4 percentof the general population.258

48• Alzheimer’s special care units. An Alzheimer’s special
care unit is a dedicated unit in a nursing home thathas tailored services for individuals with Alzheimer’sor other dementias. Nursing homes had a total of
73,742 beds in Alzheimer’s special care units in2014.493 These Alzheimer’s special care unit beds
accounted for just 4 percent of all nursing home beds,
despite 50 percent of nursing home residents having
Alzheimer’s or other dementias491 and 72 percent
of Medicare beneficiaries with Alzheimer's dementia
having a nursing home stay in the last 90 days of life.494
Long-Term Care Services Provided at Home andin the Community
Nationally, state Medicaid programs are shifting longterm care services from institutional care to home- andcommunity-based services as a means to both reduce
unnecessary costs and meet the growing demand for these
services by older adults. The federal and state governments
share the management and funding of the program,and states differ greatly in the services covered by their
Medicaid programs. In 2016, home- and community-based
services represented the majority (57 percent) of Medicaid
spending on long-term services and supports, withinstitutional care representing the remaining 43 percent.495
Between 2013 and 2016, Medicaid spending on homeand community-based services increased 26 percent
overall, while spending on institutional care increased
only 1.5 percent over the same period. Additionally, total
spending on home care for Medicare beneficiaries with
Alzheimer’s or other dementias nearly doubled between
2004 and 2011, although increases in spending may be
due to a variety of factors, including more people being
diagnosed with Alzheimer’s dementia, more people using
home care, an increase in the number of coexisting medical
conditions, more intensive use of home care services andan increase in Medicaid coverage by older adults.466,496
In two recent systematic reviews of the cost-effectivenessof home support interventions for individuals withdementia, researchers found some evidence to support
occupational therapy, home-based exercise and some
psychological and behavioral treatments as potentiallycost-effective approaches, although the research that has
evaluated both the costs and benefits of home support
interventions is scant.497-498
Transitions Between Care Settings
Individuals with dementia often move between a nursing
facility, hospital and home, rather than remaining solely
in a nursing facility. In a longitudinal study of primary carepatients with dementia, researchers found that individuals
discharged from a nursing facility were nearly equally as
likely to be discharged home (39 percent) as discharged toa hospital (44 percent).499 Individuals with dementia may
also transition between a nursing facility and hospital or

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

TABLE 14

Average Annual Per-Person Payments by Type of Service and Coexisting Medical Condition for Medicare
Beneficiaries Age 65 and Older, with and without Alzheimer’s or Other Dementias, in 2018 Dollars*
Average Per-Person Medicare Payment
Medical Condition by

Total

Alzheimer’s/Dementia

MedicareHospital

PhysicianNursingHome

Hospice(A/D) Status

Payments

Care

Care

Facility Care

Health Care

Care

With A/D$27,450$8,525$2,221$4,674$2,455$3,012

Without A/D

17,132

6,140

1,581

1,502

1,017

392

With A/D

26,573

8,111

2,175

4,520

2,375

2,713

Without A/D

14,670

5,081

1,393

1,305

884

267

With A/D

30,120

9,580

2,333

5,109

2,571

3,616

Without A/D

25,554

9,726

2,095

2,766

1,825

845

With A/D

29,313

9,180

2,278

4,973

2,429

3,221

Without A/D

21,017

7,587

1,796

2,007

1,258

496

With A/D

29,098

9,206

2,306

4,928

2,513

3,341

Without A/D

19,850

7,373

1,742

1,864

1,258

630

With A/D

27,853

8,413

2,199

4,864

2,361

3,351

Without A/D

20,066

6,844

1,771

2,445

1,524

633

With A/D

26,387

7,981

2,129

4,192

2,172

2,998

Without A/D

16,736

5,246

1,461

1,119

725

507

SkilledCoronary artery disease

Diabetes

Congestive heart failure

Chronic kidney disease

Chronic obstructive pulmonary disease

StrokeCancer*This table does not include payments for all kinds of Medicare services, and as a result the average per-person payments for specific Medicare
services do not sum to the total per-person Medicare payments.
Created from unpublished data from the National 5% Sample Medicare Fee-for-Service Beneficiaries for 2014.472

Use and Costs of Health Care, Long-Term Care and Hospice49

Costs of Long-Term Care Services
Long-term care services include home- and communitybased services, assisted living and nursing home care. The
following estimates are for all users of these services.

Long-Term Care InsuranceLong-term care insurance typically covers the cost ofcare provided in a nursing home, assisted living facility
and Alzheimer’s special care facility, as well as communitybased services such as adult day care and services
provided in the home, including nursing care and help
with personal care.503 Results from the 2016 Alzheimer’s
Association Family Impact of Alzheimer’s Survey revealed
that 28 percent of adults believed Medicare covered thecost of nursing home care for people with Alzheimer’s,and 37 percent did not know whether it covered the costof nursing home care.311 While Medicare covers care ina long-term care hospital, skilled nursing care in a skilled
nursing facility and hospice care, it does not cover longterm care in a nursing home.504• Home care. The median cost for a paid non-medical
home health aide is $22 per hour and $132 per day.486
Home care costs have increased 2.5 percent annually
over the past 5 years.
• Adult day centers. The median cost of adult day services
is $72 per day.486 The cost of adult day services has
increased 2.1 percent annually over the past 5 years.
• Assisted living facilities. The median cost for care in an
assisted living facility is $4,000 per month, or $48,000
per year.486 The cost of assisted living has increased
3.0 percent annually over the past 5 years.
• Nursing homes. The average cost for a private room ina nursing home is $275 per day, or $100,375 per year,
and the average cost of a semi-private room is $245
per day, or $89,297 per year.486 The cost of nursing
home care has increased 3.6 percent and 3.4 percent
annually over the past 5 years for a private and semiprivate room, respectively.

Industry reports estimate that approximately 7.2 million
Americans had long-term care insurance in 2014. 505
The median income for individuals purchasing long-termcare insurance was $87,500 in 2010, in 2010 dollars($100,617 in 2018 dollars), with 77 percent having anannual income greater than $50,000 ($57,496 in 2018
dollars) and 82 percent having assets greater than
$75,000 ($86,243 in 2018 dollars). 505 Private healthcare and long-term care insurance policies funded only
about 8 percent of total long-term care spending in
2013, representing $24.8 billion of the $310 billion
total in 2013 dollars ($26.7 billion of the $334 billion
in 2018 dollars). 506 The private long-term care insurance
market is highly concentrated and has consolidated since
2000. In 2000, 41 percent of individuals with a longterm care policy were insured by one of the five largest
insurers; in 2014, 56 percent were insured by one of thefive largest insurers. 505

Affordability of Long-Term Care Services
Few individuals with Alzheimer’s or other dementias havesufficient long-term care insurance or can afford to pay
out of pocket for long-term care services for as long as
the services are needed.

Medicaid Costs
Medicaid covers nursing home care and long-term careservices in the community for individuals who meet
program requirements for level of care, income andassets. To receive coverage, beneficiaries must have low
incomes. Most nursing home residents who qualify for
Medicaid must spend all of their Social Security income
and any other monthly income, except for a very small
personal needs allowance, to pay for nursing home care.
Medicaid only makes up the difference if the nursing
home resident cannot pay the full cost of care or has afinancially dependent spouse. While Medicaid covers thecost of nursing home care, its coverage of many longterm care and support services, such as assisted living
care, home-based skilled nursing care and help withpersonal care, varies by state.

between a nursing facility, home and hospital, creating
challenges for caregivers and providers to ensure thatcare is coordinated across settings. Other researchers
have shown that nursing home residents frequently
have burdensome transitions at the end of life, including
admission to an intensive care unit in the last monthof life and late enrollment in hospice.500 The numberof care transitions for nursing home residents withadvanced cognitive impairment varies substantiallyacross geographic regions of the United States.501• Income and asset data are not available for people
with Alzheimer’s or other dementias specifically, but
50 percent of Medicare beneficiaries have incomesof $26,200 or less in 2016 dollars ($27,347 in 2018
dollars), and 25 percent have incomes of $15,250 orless in 2016 dollars ($15,917 in 2018 dollars).502• Fifty percent of Medicare beneficiaries had totalsavings of $74,450 or less in 2016 dollars ($77,708 in
2018 dollars), 25 percent had savings of $14,550 orless in 2016 dollars ($15,187 in 2018 dollars), and8 percent had no savings or were in debt. Mediansavings were substantially lower for black/African
American and Hispanic beneficiaries than for white
Medicare beneficiaries.502

50

Total Medicaid spending for people with Alzheimer’s orother dementias is projected to be $49 billion in 2019(in 2019 dollars). A18 Estimated state-by-state Medicaid

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

spending on people with Alzheimer’s or other dementias
in 2019 (in 2019 dollars) is included in Table 15 (see page52). Total per-person Medicaid payments for Medicare
beneficiaries age 65 and older with Alzheimer’s or otherdementias were 23 times as great as Medicaid paymentsfor other Medicare beneficiaries.466 Much of thedifference in payments for beneficiaries with Alzheimer’sor other dementias and other beneficiaries is due to thecosts associated with long-term care (nursing homes
and other residential care facilities, such as assisted living
facilities) and the greater percentage of people withdementia who are eligible for Medicaid.
Use and Costs of Care at the End of Life
Hospice care provides medical care, pain management,
and emotional and spiritual support for people whoare dying, including people with Alzheimer’s or otherdementias, either in a facility or at home. Hospicecare also provides emotional and spiritual support
and bereavement services for families of people whoare dying. The main purpose of hospice is to allow
individuals to die with dignity and without pain and other
distressing symptoms that often accompany terminal
illness. Medicare is the primary source of payment for
hospice care, but private insurance, Medicaid and othersources also pay for hospice care. Based on data fromthe National Hospice Survey for 2008 to 2011, nearlyall (99 percent) hospices cared for individuals withdementia, although only 67 percent of hospices cared
for individuals with a primary diagnosis of dementia. 507
Fifty-two percent of individuals in for-profit hospices
had either a primary or comorbid diagnosis of dementia,
while 41 percent of individuals in nonprofit hospices
had a diagnosis of dementia. More research is needed tounderstand the underlying reasons for the differencesin the percentage of people with dementia in for-profit
versus nonprofit hospices.
Nineteen percent of Medicare beneficiaries with
Alzheimer’s and other dementias have at least one
hospice claim annually compared with 2 percent ofMedicare beneficiaries without Alzheimer’s or otherdementias.472 Expansion of hospice care is associatedwith fewer individuals with dementia having more than
two hospitalizations for any reason or more than one
hospitalization for pneumonia, urinary tract infection,
dehydration or sepsis in the last 90 days of life.508 In
2016, there were 4,336 hospice companies in the UnitedStates that provided hospice care in the home, assisted
living facilities, long-term care facilities, unskilled nursing
facilities, skilled nursing facilities, inpatient hospitals,
inpatient hospice facilities and other facilities. Additionally,
19 percent of Medicare beneficiaries who received hospicecare had a primary diagnosis of dementia, including

Alzheimer’s dementia (Table 16, see page 53).509-510
Dementia was the third most common primary diagnosis
for Medicare beneficiaries admitted to hospice overall,with cancer being the most common primary diagnosis,
followed by heart disease and other circulatory
conditions. Forty-five percent of hospice users in 2014
had a primary or secondary diagnosis of Alzheimer’s orother dementias, suggesting that a large proportion of
hospice users have Alzheimer’s as a comorbid condition.491
The average length of hospice stay for individuals with a
primary diagnosis of dementia was more than 50 percent
longer than for individuals with other primary diagnoses,
based on data from the 2008 to 2011 National Hospice
Survey.507 Individuals with a primary diagnosis of dementia
stayed an average of 112 days versus 74 days forindividuals with other primary diagnoses.
Per-person hospice payments among all individuals with
Alzheimer’s dementia averaged $2,060 compared with$156 for all other Medicare beneficiaries.466 In 2016
Medicare reimbursement for home hospice services
changed from a simple daily rate for each setting to a twotiered approach that provides higher reimbursement fordays 1-60 than for subsequent days and a service intensity
add-on payment for home visits by a registered nurse orsocial worker in the last 7 days of life. In 2018, the rates
were $192.78 per day for days 1-60 and $151.41 per day fordays 61 and beyond.511 In a simulation to evaluate whether
the reimbursement change will reduce costs for Medicare,a group of researchers found that the new reimbursement
approach is anticipated to reduce costs for Medicare,although individuals with dementia who receive hospicecare will have higher Medicare spending than individuals
with dementia who do not receive hospice care. 512
For Medicare beneficiaries with advanced dementia who
receive skilled nursing facility care in the last 90 days oflife, those who are enrolled in hospice are less likely to diein the hospital.513 Additionally, those enrolled in hospicecare are less likely to be hospitalized in the last 30 daysof life514 and more likely to receive regular treatment for
pain.515-516 Nearly half of individuals with dementia die
while receiving hospice care.494 Satisfaction with medicalcare is higher for families of individuals with dementia
who are enrolled in hospice care than for families ofindividuals with dementia not enrolled in hospice care.517
Feeding Tube Use at the End of Life
Individuals with frequent transitions between healthcare settings are more likely to have feeding tubes atthe end of life, even though feeding tube placement
does not prolong life or improve outcomes.473 The oddsof having a feeding tube inserted at the end of life varyacross the country and are not explained by severity ofillness, restrictions on the use of artificial hydration and

Use and Costs of Health Care, Long-Term Care and Hospice51

TABLE 15

Total Medicaid Payments for Americans Age 65 and Older Living with Alzheimer’s or Other Dementias by State*
2019

2025

(in millions(in millions

Percentage

2019

2025

(in millions(in millionsof dollars)of dollars)

Increase

Percentageof dollars)of dollars)

Increase

Alabama$896$1,11424.4Montana

$157

$201

27.7

Alaska

71

109

52.9

Nebraska

361

406

12.6

Arizona

386

540

40.0

Nevada

185

274

48.5

Arkansas

367

449

22.3

New Hampshire

246

331

34.6

California

3,925

5,181

32.0

New Jersey

2,090

2,585

23.7

Colorado

596

780

30.9

New Mexico

207

276

33.3

Connecticut

962

1,174

21.9

New York

5,037

6,243

23.9

Delaware

238

309

29.7

North Carolina

1,252

1,610

28.6

District of Columbia

122

133

9.0

North Dakota

184

213

15.6

Florida

2,601

3,414

31.2

Ohio

2,452

2,907

18.5

Georgia

1,180

1,575

33.5

Oklahoma

499

604

20.9

Hawaii

232

281

21.2

Oregon

244

313

28.5

Idaho

144

194

34.7

Pennsylvania

3,543

3,984

12.5

Illinois

1,713

2,176

27.0

Rhode Island

455

559

22.6

Indiana

1,020

1,219

19.5

South Carolina

613

809

31.8

Iowa

654

783

19.7

South Dakota

174

209

20.4

Kansas

441

537

21.7

Tennessee

1,050

1,361

29.6

Kentucky

778

938

20.6

Texas

2,913

3,907

34.1

Louisiana

740

923

24.7

Utah

180

233

29.6

Maine

205

271

32.6

Vermont

110

145

31.7

Maryland

1,166

1,518

30.2

Virginia

952

1,252

31.5

Massachusetts

1,696

2,008

18.4

Washington

517

682

31.8

Michigan

1,422

1,718

20.9

West Virginia

430

515

19.7

Minnesota

876

1,075

22.7

Wisconsin

752

914

21.6

Mississippi

587

721

22.9

Wyoming

81

110

34.7

Missouri

923

1,124

21.8

U.S. Total$48,628$60,907

25.3

State

State

*All cost figures are reported in 2019 dollars. State totals may not add to the U.S. total due to rounding.
Created from data from the Lewin Model. A18

52

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

TABLE 16

Number and Percentage of Medicare Beneficiaries Admitted to Hospice with a Primary Diagnosis of Dementia by State, 2016
Number ofPercentage of

Beneficiaries

Beneficiaries

Number ofPercentage of

Beneficiaries

Beneficiaries

Alabama

5,855

20

Montana580

13

Alaska103

14

Nebraska

1,544

18

Arizona

7,078

19

Nevada1,969

18

Arkansas

2,974

18

New Hampshire

904

16

California

27,43620

New Jersey

7,459

23

Colorado

3,056

15

New Mexico

1,476

16

Connecticut

2,356

16

New York

7,564

16

Delaware667

12

North Carolina

8,416

18

District of Columbia

226

17

North Dakota

448

19

Florida19,54716

Ohio

11,98417

Georgia9,873

22

Oklahoma

3,960

19

Hawaii961

18

Oregon

3,559

18

Idaho

1,465

18

Pennsylvania

11,94817

Illinois

8,854

17

Rhode Island

1,504

25

Indiana5,593

17South Carolina

5,813

21

Iowa

2,991

16

South Dakota

418

13

Kansas2,588

18Tennessee

5,852

19

Kentucky

2,733

15

Texas

25,82423

Louisiana

4,717

20

Utah

2,275

19

Maine

1,405

19

Vermont

480

17Maryland

3,618

16

Virginia

5,836

19

Massachusetts

6,763

23

Washington

5,305

21

Michigan

8,626

16

West Virginia

1,504

15

Minnesota

5,096

21

Wisconsin

4,981

17

Mississippi

3,215

20

Wyoming78

7

Missouri

5,297

16

Total

264,774

19

State

State

Created from data from the U.S. Centers for Medicare & Medicaid Services.509

Use and Costs of Health Care, Long-Term Care and Hospice53

FIGURE 12

Place of Death Due to Alzheimer’s Disease, 1999 to 2016
Percentage

Nursing home/long-term care

Decedent’s home

Medical facility

Place of death unknown

Other

Hospice facility

100
90
80
70
60
50
40
30
20
10
0
Year

1999

2000

2001

2002

2003

2004

2005

2006

Created from data from the National Center for Health Statistics.

nutrition, ethnicity or gender. Researchers found thatfeeding tube use was highest for people with dementia
whose care was managed by a subspecialist physician
or both a subspecialist and a general practitioner. By
contrast, feeding tube use was lower among people
with dementia whose care was managed by a generalpractitioner. 518-519 With the expansion of Medicaresupported hospice care, the use of feeding tubes in
the last 90 days of life has decreased for individuals
with Alzheimer’s or other dementias. 508 Finally, with
the increased focus on the lack of evidence supporting
feeding tube use for people with advanced dementia,
the proportion of nursing home residents receiving afeeding tube in the 12 months prior to death decreased
from nearly 12 percent in 2000 to less than 6 percent
in 2014. 519
Place of Death for Individuals with Alzheimer’sor Other Dementias
Between 1999 and 2016, the proportion of individuals
with Alzheimer’s who died in a nursing home decreased
from 68 percent to 51 percent, and the proportion who
died in a medical facility decreased from 15 percent to
6 percent. 248 During the same period, the proportion ofindividuals who died at home increased from 14 percent
to 27 percent (Figure 12).

54

2007

2008

2009

2010

2011

2012

2013

2014

2015

2016

248

Use and Costs of Health Care and Long-TermCare Services by Race/Ethnicity
Among Medicare beneficiaries with Alzheimer’s or otherdementias, black/African Americans had the highest
Medicare payments per person per year, while whites
had the lowest payments ($27,935 versus $20,658,
respectively) (Table 17). The largest difference inpayments was for hospital care, with black/African
Americans incurring 1.7 times as much in hospital carecosts as whites ($9,433 versus $5,604).472
In a study of Medicaid beneficiaries with a diagnosis of
Alzheimer’s dementia that included both Medicaid andMedicare claims data, researchers found significant
differences in the costs of care by race/ethnicity.520
These results demonstrated that black/African Americans
had significantly higher costs of care than whites or
Hispanics, primarily due to more inpatient care and morecomorbidities. These differences may be attributable tolater-stage diagnosis, which may lead to higher levels of
disability while receiving care; delays in accessing timely
primary care; lack of care coordination; duplication ofservices across providers; or inequities in the access tocare. However, more research is needed to understandthe reasons for this health care disparity.

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

TABLE 17

Average Annual Per-Person Payments by Type of Service and Race/Ethnicity for Medicare
Beneficiaries Age 65 and Older, with Alzheimer’s or Other Dementias, in 2018 Dollars
Total Medicare
Skilled Nursing

Home

Per Person

Payments
Hospital Care

Physician Care

Facility Care

Health Care

Hospice Care

$20,658$5,604$1,627$3,588$1,775$3,276

Black/African American

27,935

9,433

2,206

4,448

2,170

2,425

Hispanic

22,141

7,584

1,919

3,419

1,872

1,806

Other

26,877

8,530

2,158

3,582

3,845

2,670

Race/Ethnicity
White

Created from unpublished data from the National 5% Sample Medicare Fee-for-Service Beneficiaries for 2014.472

Avoidable Use of Health Care and Long-TermCare Services
Preventable Hospitalizations
Preventable hospitalizations are one common measureof health care quality. Preventable hospitalizations are
hospitalizations for conditions that could have been avoided
with better access to, or quality of, preventive and primarycare. Unplanned hospital readmissions within 30 days areanother type of hospitalization that potentially could havebeen avoided with appropriate post-discharge care. In
2013, 21 percent of hospitalizations for fee-for-service
Medicare enrollees with Alzheimer’s or other dementias
were either unplanned readmissions within 30 days or for
an ambulatory care sensitive condition, that is, a condition
that was potentially avoidable with timely and effective
ambulatory care. The total cost to Medicare of thesepotentially preventable hospitalizations was $4.7 billion($5.4 billion in 2018 dollars).521 Of people with dementia
who had at least one hospitalization, 18 percent were
readmitted within 30 days. Of those who were readmitted
within 30 days, 27 percent were readmitted two or moretimes. Ten percent of Medicare enrollees had at least one
hospitalization for an ambulatory care sensitive condition,and 14 percent of total hospitalizations for Medicare
enrollees with Alzheimer’s or other dementias were forambulatory care sensitive conditions.
Based on data from the 2006 to 2008 Health andRetirement Study and from Medicare, preventable
hospitalizations represented 25 percent of the total
hospitalizations for individuals with Alzheimer’s or otherdementias.169 The proportion was substantially higher,
however, for black/African Americans, Hispanics andindividuals with low incomes. Hispanic older adults had
the highest proportion of preventable hospitalizations(34 percent).

Based on data from the 1998 to 2008 Health andRetirement Study and from Medicare, after controllingfor demographic, clinical and health risk factors,
individuals with dementia had a 30 percent greater riskof having a preventable hospitalization than those without
a neuropsychiatric disorder (that is, dementia, depression
or cognitive impairment without dementia). Moreover,individuals with both dementia and depression had a
70 percent greater risk of preventable hospitalization
than those without a neuropsychiatric disorder.522
Medicare beneficiaries who have Alzheimer’s or otherdementias and a serious coexisting medical condition(for example, congestive heart failure) are more likely to behospitalized than people with the same coexisting medical
condition but without dementia (Figure 13, see page 56).472
One research team found that individuals hospitalized withheart failure are more likely to be readmitted or die after
hospital discharge if they also have cognitive impairment.523
Another research team found that Medicare beneficiaries
with Alzheimer’s or other dementias have more potentiallyavoidable hospitalizations for diabetes complications andhypertension, meaning that the hospitalizations could
possibly be prevented through proactive care managementin the outpatient setting.524
Differences in health care use between individuals withand without dementia are most prominent for thoseresiding in the community. Based on data from the Healthand Retirement Study, community-residing individuals
with dementia were more likely to have a potentiallypreventable hospitalization, an emergency department
visit that was potentially avoidable, and/or an emergency
department visit that resulted in a hospitalization.525
For individuals residing in a nursing home, there were
no differences in the likelihood of being hospitalized or
having an emergency department visit.

Use and Costs of Health Care, Long-Term Care and Hospice55

FIGURE 13

Hospital Stays Per 1,000 Medicare Beneficiaries Age 65 and Older with Specified
Coexisting Medical Conditions, with and without Alzheimer’s or Other Dementias, 2014
Hospital stays

With Alzheimer’s or other dementias

Without Alzheimer’s or other dementias

1,000
804

800

753

791

772
590

600

727

716

576

682

678
550

475
386

400

392

200

0
Condition

Congestive
heart failure

Chronic
obstructive
pulmonarydiseaseChronic
kidneydiseaseCoronary
arterydiseaseStrokeDiabetes

CancerCreated from unpublished data from the National 5% Sample Medicare Fee-for-Service Beneficiaries for 2014.472

Initiatives to Reduce Avoidable Health Careand Nursing Home Use
Recent research has demonstrated that two types ofprograms have potential for reducing avoidable healthcare and nursing home use, with one type of program
focusing on the caregiver and the other focusing on thecare delivery team. The Caregiving section (see page 30)
describes a number of caregiver support programs, andsome of these also hold promise for reducing transitions
to residential care for individuals with Alzheimer’s or otherdementias. Additionally, collaborative care models —models that include not only geriatricians, but also social
workers, nurses and medical assistants, for example —can improve care coordination, thereby reducing healthcare costs associated with hospitalizations, emergency
department visits and other outpatient visits.454 For
example, an interprofessional memory care clinic wasshown to reduce per-person health care costs by $3,474
in 2012 dollars ($4,052 in 2018 dollars) over a year forindividuals with memory problems compared with otherswith memory problems whose care was overseen by aprimary care provider only.454 More than half of the costsavings was attributed to lower inpatient hospital costs.
The program was relatively low cost per person, with anaverage annual cost of $618 ($721 in 2018 dollars) —a nearly 6-to-1 return on investment.

56

Another group of researchers found that individuals
with dementia whose care was concentrated within asmaller number of clinicians had fewer hospitalizations
and emergency department visits and lower health carespending overall compared with individuals whose care
was dispersed across a larger number of clinicians.526 Moreresearch is needed to understand whether continuity ofcare is a strategy for decreasing unnecessary health careuse for people with Alzheimer’s or other dementias.

Projections for the Future
Total annual payments for health care, long-term careand hospice care for people with Alzheimer’s or otherdementias are projected to increase from $290 billion in2019 to more than $1.1 trillion in 2050 (in 2019 dollars).
This dramatic rise includes four-fold increases both ingovernment spending under Medicare and Medicaid andin out-of-pocket spending. A18
Potential Impact of Changing the Trajectory of
Alzheimer’s Disease
While there are currently no treatments that prevent orcure Alzheimer’s disease, several groups of researchers
have estimated the cost savings of future interventions
that either slow the onset of dementia or reduce thesymptoms.277,527-529 One group of researchers estimatedAlzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

that a treatment introduced in 2025 that delays theonset of Alzheimer’s by 5 years would reduce total healthcare payments 33 percent and out-of-pocket payments
44 percent in 2050.527 A second group of researchers
estimated the cost savings of delaying the onset of
Alzheimer’s disease by 1 to 5 years. For individuals age 70
and older, they projected a 1-year delay would reduce total
health care payments 14 percent in 2050, a 3-year delay
would reduce total health care payments 27 percent,and a 5-year delay would reduce health care payments
39 percent.528 They also projected that a delay in onset
may increase per capita health care payments through theend of life due to longer life, although the additional healthcare costs may be offset by lower informal care costs.
A third group of researchers estimated that a treatmentthat slows the rate of functional decline by 10 percent
would reduce average per-person lifetime costs by $3,880
in 2015 dollars ($4,122 in 2018 dollars), while a treatmentthat reduces the number of behavioral and psychologicalsymptoms by 10 percent would reduce average per-person
lifetime costs by $680 ($722 in 2018 dollars).277

individuals with MCI due to Alzheimer’s disease would
develop Alzheimer’s dementia between 2020 and
2040 while on waiting lists for treatment. However, it
is important to note that this model assumed both thatthe hypothetical treatment would require infusions at
infusion centers and that it would depend on people being
evaluated with amyloid PET scans; neither assumption iscertain. It is also possible that future treatments will be inpill or other convenient forms and not require PET scans.
For these reasons, it is difficult to know in advance what
the true capacity constraints will be.

The Alzheimer’s Association commissioned a studyof the potential cost savings of early diagnosis in
two scenarios.529 The partial early diagnosis scenario
assumed that 88 percent of individuals who will develop
Alzheimer’s disease are diagnosed in the MCI stage rather
than the dementia stage or not at all, and the second
scenario assumed that all individuals who will develop
Alzheimer’s disease receive the diagnosis in the MCI stage.
In the partial early diagnosis scenario, approximately$7 trillion could be saved in medical and long-term carecosts for individuals who were alive in 2018 and willdevelop Alzheimer’s disease. If all individuals who werealive in 2018 and will develop Alzheimer’s disease werediagnosed during the MCI stage, $7.9 trillion could besaved. Cost savings were due to a smaller spike in costs
immediately before and after diagnosis, due to thediagnosis being made during the MCI stage rather thanthe dementia stage that has higher costs, and lower
medical and long-term care costs for individuals who havediagnosed and managed MCI and dementia compared withindividuals with unmanaged MCI and dementia.
These projections suggest that a treatment that prevents,
cures or slows the progression of the disease could
result in substantial savings to the U.S. health caresystem. Without changes to the structure of the U.S.
health care system, however, access to new treatments
for Alzheimer’s may be severely restricted by capacity
constraints. For example, one group of researchersdeveloped a model of capacity constraints that estimatedthat individuals would wait an average of 19 months
for treatment in 2020 if a new treatment is introducedby then.530 Under this model, approximately 2.1 million

Use and Costs of Health Care, Long-Term Care and Hospice57

SPECIAL REPORTALZHEIMER’S
DE TEC TION IN
THE PRIMARYCARE SE T TING:
CONNEC TING
PATIENTS WITH
PHYSICIANS

16PERCENTof seniors receive
regular cognitive
assessments during
routine healthcheck-ups.

Early detection of Alzheimer’s and other dementias
provides a number of medical, social, emotional andplanning benefits for affected individuals and theircaregivers. 529,531-532 According to a recent Alzheimer's
Association study, it also has financial benefits for both
affected individuals and the country as a whole. 529
A cornerstone of early detection of cognitive
impairment is the routine assessment. Primary careproviders may be especially well-suited to perform thisevaluation and ensure timely follow-up. Through theuse of physician and consumer surveys, this Special
Report explores the state of cognitive assessment —termed “brief cognitive assessment” here — in the
primary care setting and identifies potential solutions
for existing barriers to widespread adoption ofassessment in primary care settings.

Brief Cognitive Assessment in Primary Care
Overview of the Primary Care Setting
The goals of primary care include providing the firstpoint of contact for medical care, as well as care that iscontinuous over time, is comprehensive and coordinateswith other parts of the health system.533 Primary careproviders who treat older adults include family physicians,
general internists, geriatricians, nurse practitioners
and physician assistants, and they practice in a variety
of settings: private practices, hospital outpatient
departments, community health centers and integrated
care systems.534 In 2017, primary care physicians (PCPs)
comprised one-third of the total physician workforce, andfamily and general internal medicine physicians combined
comprised 75 percent of office-based PCPs.535 Estimatesof non-physician primary care providers in 2016 indicatethat 52 percent of nurse practitioners and 43 percent ofphysician assistants work in the primary care setting.535
Primary Care Utilization
In 2017, there were 217 physicians per 100,000 people
nationwide, 69 of whom were PCPs, which translates to
one PCP for every 1,450 Americans.535 There is significant
variation in the number of PCPs per 100,000 individuals
across states, ranging from 48 in Mississippi to 102 in
Maine. In general, the Northeast, Northwest and northernMidwest have the highest ratios of PCPs per 100,000
people.535 Including nurse practitioners and physician
assistants, there are 101 primary care providers per
100,000 people, or about 1 for every 1,000 Americans.535
According to the 2015 National Ambulatory Medical
Care Survey, 51 percent of office visits were to primarycare physicians.536 In the 2017 National Health Interview
Survey, 86 percent of respondents reported having a“usual place of health care.”537 In an analysis of 2015-2017

data from the U.S. Centers for Disease Control andPrevention (CDC) Behavioral Risk Factor Surveillance
System survey, 17 percent of women and 28 percent of
men in the United States report not having a personal
health care provider.538-539
Benefits of Primary Care for First-Line
Cognitive Assessment
Compared with neurology, psychiatry or other specialist
care settings, the primary care setting may be better
suited for brief cognitive assessment of seniors for several
reasons. As the health care professionals likely to have thelongest relationship with patients, and the practitioners
whom patients tend to see most frequently, primarycare providers may be in the best position to spot theearliest signs of cognitive decline. Continuity of care ina primary care setting is associated with lower mortality
in older adults,540-541 as well as fewer hospitalizations
and emergency department visits and improved patientsatisfaction in the general adult population.542
In addition, patients are more likely to discuss sensitive
issues such as cognitive concerns with a provider theyknow and trust. Data from the 2016 Health Reform
Monitoring Survey revealed that 74 percent of adults
younger than 65 rated their trust in their usual provider
as above a 7 on a scale from 0 to 10,543 and 90 percent
would be comfortable talking to their usual provider
about a potentially sensitive issue.544 In a 2006 telephonesurvey of 1,000 adults, more than 74 percent would advise
a close friend or family member to check with a healthprofessional about cognitive concerns, and 69 percent
think a general physician is the best place to start.545

Medicare Annual Wellness Visit
Overview
One opportunity for early identification of cognitive
decline in the primary care setting is the Medicare Annual
Wellness Visit (AWV), a benefit that began in 2011 as partof the 2010 Patient Protection and Affordable Care Act.
A required component of the AWV is an assessment ofcognitive function.
Any Medicare beneficiary who has received Medicare
Part B benefits for at least 12 months and has not had
an Initial Preventive Physical Exam or AWV within thelast 12 months is eligible for the AWV.
Utilization
Use of the AWV among eligible Medicare beneficiaries
has grown over time but is still generally low. According
to a 2012 private survey of 1,028 adults age 65 and older,
only one-third of respondents had heard of the AWV,
and only 17 percent had had an AWV.546 According to theCenters for Medicare & Medicaid Services (CMS), in 2016,

Special Report — Alzheimer’s Detection in the Primary Care Setting: Connecting Patients with Physicians59What is a "Brief Cognitive Assessment"?
For the purposes of this report, a brief cognitive
assessment is a short medical evaluation for
cognitive impairment performed by a primarycare practitioner that can take several forms. The
practitioner may do one or more of the following:• ask the patient directly about cognitive
concerns• observe patient interactions and cognitive
function directly during the visit• seek input about cognitive function from apatient’s family or friends• take physical exams, medical history, andfamily history into account• use one or more brief structured assessment
tools to obtain objective measures ofcognitive function
This Special Report uses the term “briefcognitive assessment” to avoid confusion
with a longer, more comprehensive cognitive
evaluation and to avoid confusion with aninformal, nonmedical cognitive screening thatmight be performed online or at a health fair.

just 19 percent of the 55.3 million eligible Medicare
Part B and Medicare Advantage beneficiaries utilized
the AWV.547 This was up from 17 percent in 2015,548
16 percent in 2014549 and 8 percent in 2011.549
AWV Cognitive Assessment
CMS provides limited guidelines concerning the exact
nature of the brief cognitive assessment: “Assess thebeneficiary’s cognitive function by direct observation,
while considering information from beneficiary reports
and concerns raised by family members, friends, caregivers,
and others. If appropriate, use a brief validated structured
cognitive assessment tool. For more information, refer to
the National Institute on Aging’s Alzheimer’s and Dementia
Resources for Professionals website.”550-551
A number of professional organizations provide additional
information to help primary care providers perform
brief cognitive assessments. The Alzheimer’s Association
Cognitive Assessment Toolkit includes the Medicare Annual
Wellness Visit Algorithm for Assessment of Cognition
as well as recommendations for operationalizing thedetection of cognitive impairment during the AWV(alz.org/professionals/healthcare-professionals/
cognitive-assessment).552 The Gerontological Societyof America Kickstart Assess Evaluate Refer (KAER) Toolkit,
the American Academy of Family Physicians Cognitive
Care Kit and Minnesota’s Act on Alzheimer’s® Provider
Practice Tools also provide recommendations for
identifying cognitive impairment.553-555

The State of Brief Cognitive Assessment inPrimary Care: PCP and Consumer Surveys
How many seniors are receiving brief cognitive assessments,
how often, and what do they entail? How important
do PCPs and seniors think these assessments are, anddo PCPs feel adequately trained to perform them? Are
seniors aware that an AWV should include a brief cognitive
assessment? What barriers to brief cognitive assessments
exist, and how might they be overcome?
Knowledge of the overall usage, procedures and outcomesof brief cognitive assessment in older adults is quite
sparse, and most of the limited data that does exist is atleast a decade old. Therefore, the Alzheimer’s Associationcommissioned Versta Research to conduct surveys of PCPs
and seniors to explore awareness and utilization of briefcognitive assessments in the primary care setting. A22
Alzheimer’s Association Surveys
Physicians included in the Alzheimer’s Association
Primary Care Physician Cognitive Assessment SurveyA22
were recruited through WebMD’s Medscape Physician
Panel, which includes 68 percent of all practicing PCPs
in the United States. To qualify for the survey, physicians

60

FIGURE 14

Percentage of Seniors Receiving Regular Preventive Health Care Services and Assessments for Specified Health Factors
Percentage
100
90

91%
83%

80

80%
73%

70

66%

60

61%

50
40
30
20

16%

10
0
Services andassessments

Cholesterol
level
Blood
pressure

Hearing or
vision loss
Vaccinations

CancerDiabetes

Problems withmemory or thinking

Created from data based on the Alzheimer’s Association Consumer Cognitive Assessment Survey. A22

were required to have practiced for at least 2 years, spend
at least half of their time in direct patient care, and havea practice in which at least 10 percent of their patientsare age 65 and older. A total of 1,000 PCPs, balanced byregion, practice type and years in practice, completed thesurvey by phone or online.
The Alzheimer’s Association Consumer Cognitive
Assessment SurveyA22 polled consumers aged 65
and older via the research organization NORC at the
University of Chicago’s AmeriSpeak panel, a probability
sample of the full U.S. population. A total of 1,954
individuals completed the survey by phone or online.
Fifty-five percent were female and 45 percent male.
Forty-one percent were age 75 and older, 33 percent
were age 65-69, and 26 percent were age 70-74.
Forty-two percent had an annual household income
below $40,000, 30 percent had an income between$40,000 and $74,999, and 28 percent had an income
above $75,000. Seventy-seven percent of respondents
identified as white and non-Hispanic, 9 percent as blackand non-Hispanic, and 8 percent as Hispanic.
The Alzheimer’s Association surveys revealed that,
although nearly all PCPs and four of five seniors thinkbrief cognitive assessments are beneficial, only half ofseniors are being assessed and just one in seven is getting
regular brief cognitive assessments. This number is in
sharp contrast to the high percentages of seniors who
receive routine assessments of other aspects of theirhealth such as blood pressure and cholesterol levels. The
surveys also found a disconnect between patient and
PCP expectations: a large majority of seniors expect their
physicians to recommend brief cognitive assessments,
but physicians are waiting for patients or family members
to report symptoms or request an assessment before
doing so. In addition, most seniors are aware of the AWV
provided by Medicare, but just one-third know that an
AWV should include a brief cognitive assessment and only
one-third are aware that Medicare will pay for testing
and care planning for individuals with dementia. Nine of
10 PCPs want more guidance on nearly all aspects ofthe brief cognitive assessment process, including whichassessment tools to use and how to use them, which
patients to assess, and what to do when an assessment
indicates possible cognitive impairment.
Overall, the survey results highlight significant
underusage of this important health assessment andidentify several areas where both PCP and senioreducation could be improved.

Special Report — Alzheimer’s Detection in the Primary Care Setting: Connecting Patients with Physicians

61Survey Results
Usage of Brief Cognitive Assessments in Primary Care
The results of the consumer survey show that nearly
all seniors (94 percent) have seen a PCP for routine
exams in the last year, but fewer than half (47 percent)have ever discussed their thinking or memory abilities
with a health care provider. Less than a third (28 percent)have ever been assessed for cognitive problems.
In fact, just one in seven seniors (16 percent) receives
regular cognitive assessments for problems with memoryor thinking during routine health checkups, which stands insharp contrast to regular screening or preventive services
for other health factors: blood pressure (91 percent);cholesterol (83 percent), vaccinations (80 percent), hearingor vision (73 percent), diabetes (66 percent) and cancer(61 percent) (Figure 14, see page 61).
The results of the PCP survey show that PCPs
perform brief cognitive assessments for an averageof 50 percent of their patients age 65 or older,
and roughly half of PCPs (47 percent) report that
performing brief cognitive assessments for all patientsage 65 or older is their standard protocol. Of those
who report performing brief cognitive assessments
as part of their standard protocol, 72 percent do soannually, 22 percent do so at least every 2 years,
and 6 percent do so less frequently.
There are limited older data on how often cognitive
assessments were performed in primary care. An analysis
of 2000-2002 data from the Aging, Demographics, andMemory Study (ADAMS) of 845 community-based seniors
over age 70 found that only 8 percent had ever received
a cognitive evaluation by a physician.164 More generally,a 2008 survey of 1,000 PCPs showed that 40 percent
reported discussing cognitive impairment risk with adults
who did not have a diagnosis of dementia “often” or“very often" in the last 6 months, and another 39 percent
reported having this discussion “sometimes.”556
Brief Cognitive Assessment Procedures
Of the 28 percent of seniors who report ever having
had a cognitive assessment, 89 percent say they wereadministered a test to measure their thinking and memory
abilities; 59 percent were asked questions about cognitive
symptoms; 28 percent were asked questions about
symptoms that family, friends or caregivers had noticed;
and 19 percent say their friends, family or caregivers wereasked directly about the patient’s symptoms.
More than 95 percent of PCPs report that they use
their own observations during visits, ask the patientquestions about his or her cognition, and ask caregivers,
family and friends about the patient’s cognition during abrief cognitive assessment. Nine of 10 also report using

62

one or more structured assessments. The assessments
PCPs most commonly report using are the Mini-Mental
State Examination (MMSE; 80 percent), Clock Drawing
Test (CDT; 64 percent) and the Mini-Cog (52 percent).
A23
Among those PCPs who use structured assessments,
a large majority (77 percent) consider their structured
testing not definitive enough to make a diagnosis, insteadfavoring more testing. This view is consistent withrecent data indicating that brief structured assessment
instruments are imperfect tools and comprise just one
aspect of the diagnostic process.557-558
PCPs report relying mostly on continuing medical
education (CME) (92 percent), professional journals(85 percent), colleagues (77 percent) and scientificmeetings (58 percent) for information about briefcognitive assessment best practices. However, theirfamiliarity with resources designed to assist PCPs
with brief cognitive assessments offered by specificprofessional groups is relatively low. Less than
40 percent of PCPs are familiar with, and less than
one-third report using, the Alzheimer’s Association
Medicare AWV Algorithm, the Alzheimer’s Association
Cognitive Assessment Toolkit or the American
Academy of Family Physicians Cognitive Care Kit.
A 2008 PCP survey found that 42 percent obtaincognitive health information from professional journals,
17 percent from CME sources and 17 percent fromprofessional websites or listservs.556 In a focus group of
primary care providers collected in 2007-2008 as part of
the Healthy Brain Study, online information and CME werethe major sources of information about cognitive health.559
Nearly all respondents in the Alzheimer’s Association
Primary Care Physician Cognitive Assessment Survey saythat more information about several aspects of the briefcognitive assessment and follow-up process would be
useful to them (Figure 15), consistent with earlier studies
suggesting that PCPs could benefit from, and desire,more information about how to conduct brief cognitive
assessments.560-563 For example, structured cognitive
assessment tools are incorrectly scored or reported in
one-quarter to one-third of cases.561-562
Decision Whether or Not to Assess
Nearly all PCPs say the decision to assess patients forcognitive impairment is driven, in part, by reports ofsymptoms and/or requests. This includes reports ofsymptoms from family, caregivers or friends (98 percent)or patients themselves (97 percent), or requests foran assessment from family or caregivers (98 percent)or patients (94 percent). Ninety-six percent assess apatient for cognitive impairment if their own subjective
assessment during an office visit indicates potential
impairment. Three-quarters or more assess patients

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

FIGURE 15

Percentage of Primary Care Physicians Who Say Specific Types of Additional Information
Would Be Helpful for Brief Cognitive Assessments
Percentage
100

Very useful95%

Somewhat useful

94%

93%

91%

90

88%

88%

84%

80
70
60
50
40
30
20
10
0
Type ofinformation

Next steps whenassessment indicates
impairment

Which assessment
tools to use

Ways to efficiently
implement assessment
in my practice
How to use
assessment tools

When to retest if
assessment indicatesnormal cognition
Which patientsto assess

How to disclose
impairment

Created from data based on the Alzheimer’s Association Primary Care Physician Cognitive Assessment Survey. A22

based upon age (74 percent) or if the patient's medical
history indicates a higher risk of cognitive impairment(87 percent), but just 32 percent rely on othersociodemographic risk factors such as race or sex
in deciding whether or not to assess a patient.
When PCPs choose not to assess a patient age 65 orolder for cognitive impairment, most often it is becausea patient presents with no symptoms or complaints(68 percent). Another reason for not assessing patients
given by more than half of PCPs is a lack of time during
patient visits (58 percent), a response that is consistent
with data indicating that the U.S. primary care system isbeyond capacity. For example, estimates from 2003 and2009 suggest that a PCP with 2,500 patients would needmore than 7 hours per work day to complete all of therecommended preventive services564 and nearly 22 hours
per work day to provide preventive services and chronic
disease management.565
A majority also cite patient resistance as a reason for notalways assessing, including resistance to initial assessment(57 percent) and high patient refusal rates for follow-up
testing (34 percent). Several studies have also reported highrefusal rates, ranging from 48 percent to 67 percent.163,566-568
Nearly half of PCPs sometimes choose not to assess apatient because treatment options are limited. Additional
concerns about the impact of a diagnosis on the patient,lack of confidence in assessing, business concerns anddifficulties with patients were also cited. A24
Next Steps Following a Brief Cognitive Assessment
Medical Follow-up
When PCPs detect cognitive impairment, 97 percent
recommend laboratory testing for reversible causes ofcognitive impairment, and 99 percent make referrals to
specialists. However, only 56 percent of PCPs recommend
laboratory testing for all patients with a detected
impairment, and only 17 percent make specialist referrals
for all patients with a detected impairment.
Disclosure of Diagnosis
When cognitive impairment is detected, PCPs say they
inform their patients 92 percent of the time (on average),and 64 percent report that they always inform patients.
Nearly all seniors (95 percent) would want their health careprovider to tell them if they were showing signs of thinking
and memory problems, and 99 percent believe they haveSpecial Report — Alzheimer’s Detection in the Primary Care Setting: Connecting Patients with Physicians63

a right to know this information. Nine of 10 seniors would
also want to undergo further testing to learn more about
the problem and how it might be treated.
Among the 36 percent of surveyed PCPs who inform lessthan 100 percent of their patients, 73 percent say it’s
because early disclosure before a full diagnostic workup
is premature, and 41 percent say that brief cognitive
assessments have high rates of false positives or false
negatives. Fifty-four percent also note that treatment
options are limited. Additional reasons PCPs decide not
to disclose are similar to reasons cited for not assessing
all patients, and include concerns about the impact of adiagnosis on the patient, a lack of confidence or expertise,business concerns and difficulties with patients, including
refusal of follow-up testing. A25
Seniors’ Concerns About Cognition
Half of all seniors (51 percent) report sometimes orfrequently noticing changes in their ability to think,understand or remember things, and nearly one-quarter(22 percent) worry about such changes. Furthermore,
one in nine seniors (11 percent) say that these changes
interfere with their ability to function in activities such as
cooking, getting dressed and grocery shopping. Fortyeight percent of seniors report doing activities or hobbies
specifically because they hope it will help them withmemory or thinking. This contrasts with the 84 percent
who reported spending time doing activities that are
beneficial for brain health in a 2006 telephone survey
conducted by the American Society on Aging and the
MetLife Foundation of attitudes and awareness of brain
health involving 1,000 adults age 42 and older.545
Discussion of Cognitive Concerns with HealthCare Providers
Of the 51 percent of seniors who sometimes orfrequently notice changes in their cognition, most
discuss these changes with family (67 percent) andfriends (54 percent), but only 40 percent have talked
to a health care provider about the changes. Among
those who have, 37 percent talked to their primary
health care provider and 12 percent talked to a
specialist. Among the entire population of seniors
surveyed, 47 percent have ever discussed their thinking
and memory abilities with a health care provider, and34 percent have done so in the last year.
Only one-quarter of seniors report that a health careprovider has ever asked them if they have concerns about
their thinking and memory without the seniors bringing
it up first, and just 15 percent report having ever brought
up concerns on their own, without a health care provider
raising the topic first. Of those who haven’t talked to ahealth care provider about their concerns, a large majority
say it’s because the changes seem like a normal part64of aging (93 percent) and are not severe (80 percent).
A number of other reasons were also provided.
When asked whether they agree or disagree withthe statement “I trust that my doctor will recommend
testing for thinking and memory problems if it is needed,”
93 percent of seniors reported that they strongly(54 percent) or somewhat agree (39 percent).
Attitudes Toward Cognitive Assessment
Seniors' Attitudes Toward Cognitive Testing
Despite widespread lack of cognitive assessment, four offive seniors believe it is important to have their thinking
and memory checked, similar to how they might haveother routine physical check-ups and assessments,
findings that are broadly consistent with earlier data
(Figure 16).545,563
Eighty-nine percent of participants in the consumer
survey think every senior should ask his or her doctor tocheck for thinking or memory problems, and 94 percent
believe that early detection of cognitive decline is mostly
beneficial. A26 Only 2 percent of seniors believe that early
detection of cognitive impairment is mostly harmful,and the top reasons focus on the negative psychologicalimpact it may have.
Although most seniors believe in the value of assessmentand early detection, a substantial minority (up to onethird) also express concerns about assessment andtesting: 29 percent believe that tests for thinking or
memory problems are unreliable; 24 percent agree
that the idea of all seniors being tested for thinking or
memory problems is insulting; and 19 percent believe
there is no cure or treatment for thinking or memory
problems, so why bother testing for them.
PCP Attitudes Toward Early Detection of
Cognitive Impairment
Nearly all PCPs (94 percent) say they consider it important
to assess all patients age 65 and older for cognitive
impairment, and 58 percent say it is very important(Figure 16). Ninety-nine percent of PCPs consider it
important to assess high-risk patients for cognitive
impairment, and 87 percent consider it very important.
High-risk patients were defined as those with a family
history of dementia, personality changes, depression,
unexplained deterioration of a chronic disease, or falls
and balance issues. Taken together, these statistics
demonstrate to PCPs that their colleagues do indeed
value brief cognitive assessments.
PCPs are generally well aware of the importance of early
detection, and see value in the opportunities for planning,support and potential treatment that early detection
affords.529,531-532 Early detection of cognitive impairment is

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

FIGURE 16

Perceived Importance of Brief Cognitive Assessments
Very important

Not very important

Somewhat important

Not at all important

Percentage
100

Primary Care
Physicians

Seniors

Awareness and Utilization of Medicare Benefits
Annual Wellness Visit
Seventy-eight percent of seniors say they areknowledgeable about what their Medicare benefits cover,and 63 percent say they pay close attention to changes
in Medicare laws and the benefits that are covered. Most
(54 percent) also say they try to make full use of theirbenefits, getting all the tests, assessments and doctor
visits available to them. Conversely, 46 percent say they
use their Medicare benefits only when they are having aproblem or need medical care.

94%

90

82%

80
70
60
50
40
30

18%

20
10

6%

0
ImportanceImportantNotimportant

Important

While most PCPs say potential treatment and prevention
are important, fewer than half (45 percent) believe there
is strong scientific evidence supporting strategies to slow
the rate of cognitive decline, including strategies suchas smoking cessation, regular exercise, and control ofhypertension and other cardiovascular risk factors. The
remaining PCPs believe there is moderate (39 percent)or weak (16 percent) evidence.

Not
important

Created from data based on the Alzheimer’s Association Consumer
Cognitive Assessment and Primary Care Physician Cognitive
Assessment Surveys. A22

seen as beneficial for two-thirds of patients, as it allows forplanning and potential intervention. In all, PCPs estimatethat 64 percent of patients benefit from early detectionof cognitive impairment, while 7 percent are harmed, and29 percent are neither benefited nor harmed.
More than nine of 10 PCPs say the benefits of early
detection include allowing the patient and family to planfor the future; allowing testing and treatment for reversible
causes; encouraging patients and families to seek supportand education; and addressing potential safety issues aheadof time. The majority of PCPs also identified additional
benefits, including allowing patients to understand what
is happening to them and beginning health measures topreserve existing cognitive function for as long as possible.
The majority of PCPs also identify additional benefits,
including early treatment, more time to assemble medical
and caregiving teams, and relieving patient concerns
about other things that might be wrong. Surprisingly, just
35 percent of PCPs cite participation in clinical trials orother research as an important benefit of early detection.

Seventy-six percent of seniors are aware that Medicare
specifically provides for a free AWV, and 64 percent
report ever having seen a health care provider for an
AWV (Figure 17, see page 66). However, only half as many
(32 percent) are aware that an AWV includes a review ofmemory or thinking problems they might have, and only
one-third (32 percent) recall a health care provider asking
them about memory or thinking problems at an AWV(Figure 17).
Eighty-seven percent of PCPs are aware that Medicare
provides free AWVs, and 72 percent, are aware that
AWVs specifically provide for services to help detectcognitive impairment (Figure 17). On average, those
who are aware that AWVs provide services to help
detect cognitive impairments report performing anassessment at four of five AWVs. However, PCPs
report, on average, that just four in 10 of their patientsare coming in for AWVs.
Care Planning Benefits
Roughly one-third of seniors are aware that Medicare
will pay for testing and care planning for people whohave Alzheimer’s disease, other dementia or cognitive
impairment. Just under one-third of PCPs (30 percent)are aware that Medicare provides reimbursement for aclinical visit that results in a comprehensive care plan,
including cognition-focused evaluation (CPT® code
99483) and fewer than one in four (22 percent) reporthaving billed under CPT® code 99483.
Differences Among PCPs Based on Years in Practice
PCPs who have been in practice fewer than 25 years(n=622) are more focused on assessing patients for cognitive
impairment than those who have been in practice forSpecial Report — Alzheimer’s Detection in the Primary Care Setting: Connecting Patients with Physicians

65

FIGURE 17

Awareness of the Medicare Annual Wellness Visit (AWV) Among Primary Care Physicians and Seniors
Percentage

Primary Care Physicians

Seniors

100
90

87%

80

72%

70

76%

60
50
40

32%

30
20
10
0
Percentage awareof the AWV

Percentage awarethat the AWV includes
cognitive assessment

Percentage awareof the AWV

Percentage awarethat the AWV includes
cognitive assessment

Created from data based on the Alzheimer’s Association Consumer Cognitive Assessment and Primary Care Physician Cognitive Assessment Surveys. A22

25 years or more (n=378). For example, those with fewer
years in practice assess a greater percentage of theirolder patients for cognitive impairment (53 percent versus
46 percent), are more likely to assess all of their older
patients as part of their standard protocol (49 percent versus
43 percent) and think that early detection is beneficial fora higher percentage of their patients (66 percent versus
61 percent) than those with 25 or more years in practice.
They are also more likely to use structured assessments
during cognitive evaluations (91 percent versus 86 percent)and refer patients to a specialist when cognitive impairment
is detected (61 percent versus 57 percent). All differences
are statistically significant.

PCPs believe regular assessments are important for all
adults age 65 or older. It also indicates that PCPs are
responsive to seniors bringing up cognitive symptoms.
Important messages for seniors are that their doctors
think cognitive assessments are valuable, and that theyshould speak to their doctor if they have concerns about
their thinking or memory.

Toward Better Cognitive Assessment:
Challenges and Steps Forward

While the Alzheimer’s Association senior survey showedthat four of five older adults think brief cognitive
assessments are beneficial and nine of 10 say they would
want further testing if an impairment was detected,
nearly 30 percent of seniors surveyed believe thattests for thinking or memory problems are unreliable.
Furthermore, 57 percent of PCPs cite patient resistanceto initial assessment, and 34 percent cite refusal offollow-up testing, as reasons they don’t always provide
brief cognitive assessments, consistent with earlier
studies documenting these two phenomena.163 Thus,
seniors would benefit from increased awareness of the

Taken together, the Alzheimer’s Association surveys
provide a detailed view of the current state of briefcognitive assessments in the primary care setting and shedlight on several opportunities for better education of bothseniors and PCPs that have the potential to improve thequality and quantity of cognitive assessments.
Educational Opportunities for Seniors
The Alzheimer’s Association Primary Care Physician
Cognitive Assessment Survey reveals that nine of 10

66

Despite nearly 80 percent of seniors reporting thatthey are knowledgeable about their Medicare coverage,
only 32 percent are aware that AWVs include cognitive
assessment. This represents an important opportunity
to increase seniors' knowledge of the benefits
available to them.

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

importance of brief cognitive assessments and of followup testing when cognitive impairment is detected.
Educational Opportunities for PCPs
In addition to highlighting key messages for older Americans,the Alzheimer’s Association surveys identified key trends
for PCPs to understand. With four of five seniors indicatingthat brief cognitive assessments are beneficial and nine of
10 saying they trust their doctor to recommend cognitive
testing, it is clear not only that seniors value cognitive
assessments, but also that they are waiting for their doctor
to ask about their thinking and memory symptoms.
Although PCPs are generally well aware of the many
medical, financial and social/emotional benefits of early
detection,529,531-532 fewer than four in 10 cite participationin clinical trials or other forms of research as an important
benefit of early detection, suggesting an opportunity forincreased education about the many ways that clinical trial
participation can be helpful to their patients.
Resources on Brief Cognitive Assessment Best Practices
The Alzheimer’s Association PCP survey showed thatnearly all PCPs desire more information about several
aspects of brief cognitive assessments. In recognition of
the lack of clear guidelines from CMS on how to perform
cognitive assessment during an AWV, in 2017, theAlzheimer’s Association convened a Diagnostic Evaluation
Clinical Practice Guideline Workgroup (the AADx-CPG
Workgroup), composed of experts across disciplines indementia care and research, that focuses on the evaluation,
diagnosis and disclosure process in all care settings,
particularly in primary care. When published, these clinicalpractice guidelines will be an important resource for PCPs.
Just four of 10 PCPs are aware of, and just threeof 10 use, the existing resources for brief cognitive
assessment best practices created by professionalsocieties. The Alzheimer’s Association Medicare
Annual Wellness Visit Algorithm for Assessment of
Cognition and the Cognitive Assessment Toolkit provide
guidance on review of patient health risk assessment
information, patient observation, informal questioning
about cognition, as well as the use of specific structured
patient and informant cognitive assessment tools. 552,569
The American Academy of Family Physicians Cognitive
Care Kit contains resources on cognitive assessments,
diagnosis and disclosure, and disease management, as
well as prevention, long-term planning and caregiver
resources. 554 Increasing PCP awareness and use of
these tools is an important step to empowering
physicians to increase the quantity and quality ofbrief cognitive assessments.
The Healthy Brain Initiative State and Local Public HealthPartnerships to Address Dementia: The 2018-2023 Road Map,published by the CDC and the Alzheimer’s Association,
outlines 25 action agenda items to maximize cognitive
health, including several strategies aimed at providing
better education about brief cognitive assessments to
PCPs.570 In addition, in 2018, the Alzheimer's Association
launched an innovative pilot program that is connecting
dementia care experts with health care providers. The
program includes information and resources relevant
to clinical practice and is aimed at helping primary careproviders not specialized in dementia care to better
diagnose, care and support individuals with Alzheimer's
and other dementias.
A handful of primary care provider training programs
have been developed to aid cognitive assessment in
the primary care setting. Studies of these programs,
which involved small sample sizes, had mixed results.
Positive outcomes reported by these studies include
increased cognitive assessment rates, improved ability
to detect dementia, increased clinician confidence indiagnosis and dementia care overall, and higher patientsatisfaction.563,571-573 More research is needed tofurther evaluate the utility of cognitive assessment
training programs.
New Diagnostic Modalities
As research on additional ways to diagnose Alzheimer’s
disease and other dementias moves forward, new tools
for diagnosis are becoming available to clinicians. Threepositron emission tomography (PET) radiotracers
are currently approved by the U.S. Food and Drug
Administration to assist clinicians in the diagnosis of
Alzheimer’s disease, although they cannot yet be used
to conclusively diagnose the disease in clinical practice.
The Imaging Dementia—Evidence for Amyloid Scanning(IDEAS) Study, led by the Alzheimer’s Association,is currently assessing whether amyloid PET imaging
can impact treatment decisions and medical outcomesin people with MCI or dementia of uncertain origin.
Preliminary results indicate that amyloid PET imaging
led to a change in patient management in more than
60 percent of participants. 574
Cerebrospinal fluid (CSF) biomarkers are anotherpromising diagnostic tool for Alzheimer’s disease
currently under development. 529 In preparation for the
inclusion of CSF biomarkers in the diagnostic processof Alzheimer’s disease, the Alzheimer’s Association
convened a multidisciplinary workgroup that developed
appropriate use criteria for lumbar puncture and CSF
testing to guide clinicians. 575
It is important to note that these tools are likely to be
utilized in tertiary care rather than primary care. They are
not needed to diagnose the presence of cognitive decline ordementia, but rather may be used to determine the specific

Special Report — Alzheimer’s Detection in the Primary Care Setting: Connecting Patients with Physicians

67cause or causes of a person's cognitive symptoms. As new
diagnostic tools become available for clinical practice,physician and consumer attitudes and practices with respect
to brief cognitive assessments may also evolve.
Trends of Hope
Despite significant challenges to improving briefcognitive assessments in the primary care setting, there
are a number of encouraging signs that the UnitedStates is moving toward better and more numerous
assessments, and better awareness of cognitive decline.
Both seniors and PCPs think cognitive assessments areimportant, indicating that there is a strong foundationof knowledge on which to build going forward. PCPs
are asking for information about how to better conduct
assessments, demonstrating a desire for improvement.
The fact that PCPs who have been in practice for fewer
than 25 years are conducting more brief cognitive
assessments and placing more importance on them thantheir older counterparts also suggests that the future
will see improved early detection of cognitive decline.
Finally, as awareness and usage of the Medicare AWVs,
and the new care planning benefit grows, it will become
progressively more common to regularly assess the
cognition of older adults.

Conclusions
The Alzheimer’s Association Primary Care Physician
and Consumer Cognitive Assessment Surveys provide
a clear picture of the state of cognitive assessment in
the primary care setting. Despite seniors’ and PCPs’
widespread awareness of the benefits of early detection
and widely held beliefs that regular cognitive assessments
are important, just half of seniors are being assessed, andonly one in seven is receiving regular assessments.
The surveys highlight a number of educational
opportunities for seniors and PCPs alike that havethe potential to lead to the better utilization of briefcognitive assessments and the greater detection anddiagnosis of cognitive impairment and dementia thatare so urgently needed.

68

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

End Notes
A1. Number of Americans age 65 and older with Alzheimer’s
dementia for 2019 (prevalence of Alzheimer’s in 2019): The
number 5.6 million is from published prevalence estimates basedon incidence data from the Chicago Health and Aging Project(CHAP) and population estimates from the 2010 U.S. Census.51
A2. Percentage of total Alzheimer’s dementia cases by age groups:
Percentages for each age group are based on the estimated200,000 people under 65,51 plus the estimated numbers forpeople ages 65 to 74 (0.9 million), 75 to 84 (2.6 million), and 85+(2.1 million) based on prevalence estimates for each age groupand incidence data from the CHAP study.
A3. Proportion of Americans age 65 and older with Alzheimer’s
dementia: The 10 percent for the age 65 and older population
is calculated by dividing the estimated number of people age
65 and older with Alzheimer’s dementia (5.6 million) by the U.S.
population age 65 and older in 2019, as projected by the U.S.
Census Bureau (54.6 million) = approximately 10 percent.157
Please note that the proportion of Americans age 65 and older
with Alzheimer’s dementia has gone down slightly in recent years
despite the number of Americans with Alzheimer’s dementia inthis age range going up; this is because of the large number ofbaby boomers who have started to enter this age range andincreased the overall number of seniors, but at the early low risk
years in this range.246
A4. Differences between CHAP and ADAMS estimates for Alzheimer’s
dementia prevalence: ADAMS estimated the prevalence of
Alzheimer’s dementia to be lower than CHAP, at 2.3 million
Americans age 71 and older in 2002,160 while the CHAP estimate
for 2000 was 4.5 million.576 At a 2009 conference convened by
the National Institute on Aging and the Alzheimer’s Association,
researchers determined that this discrepancy was mainly due totwo 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 alsocounted as having Alzheimer’s, even if they exhibited clinicalsymptoms of Alzheimer’s.161 Because the more stringent
threshold for dementia in ADAMS may miss people with mild
Alzheimer’s dementia and because clinical-pathologic studies haveshown that mixed dementia due to both Alzheimer’s and vascularpathology in the brain is very common,25 the Association believes
that the larger CHAP estimates may be a more relevant estimateof the burden of Alzheimer’s dementia in the United States.
A5. Number of new cases of Alzheimer’s dementia in 2019:
The East Boston Established Populations for Epidemiologic Studyof the Elderly (EPESE) estimated that there would be 454,000
new cases in 2010 and 491,000 new cases in 2020 (see Hebert
et al.183). The Alzheimer’s Association calculated the incidence of
new cases in 2019 by multiplying the 10-year change from
454,000 to 491,000 (37,000) by 0.9 (for the number of years
from 2010 to 2019 divided by the number of years from 2010 to2020), adding that result (33,300) to the Hebert et al. estimate for2010 (454,000) = 487,300.183 Rounded to the nearest thousand,this is 487,000 new cases of Alzheimer’s dementia in 2019.
A6. Criteria for identifying people with Alzheimer’s or otherdementias in the Framingham 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 forincidence of dementia.184 Diagnosis of dementia was madeaccording to the Diagnostic and Statistical Manual of Mental
Disorders, 4th Edition (DSM-IV) criteria and required that theparticipant survive for at least 6 months after onset ofsymptoms. 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 6 months’
duration were used, lifetime risks of Alzheimer’s and otherdementias would be higher than those estimated by this study.

A7.

State-by-state prevalence of Alzheimer’s dementia: Thesestate-by-state prevalence numbers are based on an analysis ofincidence data from CHAP, projected to each state’s population,with adjustments for state-specific age, gender, years ofeducation, race and mortality.185 Specific prevalence numbersfor 2019 were derived from this analysis and provided to the
Alzheimer’s Association by a team led by Liesi Hebert, Sc.D.,
from Rush University Institute on Healthy Aging.

A8. Number of women and men age 65 and older with Alzheimer’s
dementia in the United States: The estimates for the number ofU.S. women (3.5 million) and men (2.1 million) age 65 and older
with Alzheimer’s in 2019 is from unpublished data from CHAP.
For analytic methods, see Hebert et al.51
A9. Prevalence of Alzheimer’s and other dementias in older whites,
black/African Americans and Hispanics: The statement thatblack/African Americans are twice as likely and Hispanics one
and one-half times as likely as whites to have Alzheimer’s orother dementias is the conclusion of an expert review of anumber of multiracial and multiethnic data sources, as reported
in detail in the Special Report of the Alzheimer’s Association’s
2010 Alzheimer’s Disease Facts and Figures.
A10. Projected number of people with Alzheimer’s dementia: This
figure comes from the CHAP study.51 Other projections are
somewhat lower (see, for example, Brookmeyer et al.577) because
they relied on more conservative methods for counting people
who currently have Alzheimer’s dementia. A4 Nonetheless, theseestimates 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.
A11. Projected number of people age 65 and older with
Alzheimer’s dementia in 2025: The number 7.1 million is basedon a linear extrapolation from the projections of prevalenceof Alzheimer’s for the years 2020 (5.8 million) and 2030
(8.4 million) from CHAP. 51
A12. 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 true
burden of mortality for each state. States such as Florida withlarger 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.
A13. Number of family and other unpaid caregivers of people with
Alzheimer’s or other dementias: To calculate this number, theAlzheimer’s Association started with data from the BRFSS
survey. In 2009, the BRFSS survey asked respondents age
18 and over whether they 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.
To determine the number of family and other unpaid
caregivers nationally and by state, we applied the proportionof caregivers nationally and for each state from the 2009
BRFSS (as provided by the CDC, Healthy Aging Program,
unpublished data) to the number of people age 18 and older
nationally and in each state from the U.S. Census Bureau
report for July 2018. Available at: https://www.census.gov/
data/tables/time-series/demo/popest/2010s-state-detail.
html. Accessed on Jan. 3, 2019. To calculate the proportionof family and other unpaid caregivers who provide care for a
person with Alzheimer’s or another dementia, the Alzheimer’s
Association used data from the results of a national telephonesurvey also conducted in 2009 for the National Alliance for
Caregiving (NAC)/AARP. 578 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 healthproblems of the person for whom they provided care. In
response, 26 percent of caregivers said that: (1) Alzheimer’s

Appendices69

or another dementia was the main problem of the person forwhom they provided care, or (2) the person had Alzheimer’s orother mental confusion in addition to his or her main problem.
The 26 percent figure was applied to the total number ofcaregivers nationally and in each state, resulting in a totalof 16.2495 million Alzheimer’s and dementia caregivers.
A14. 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 andexperiences 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’sor a related dementia were asked questions about their careprovision. Random selections of telephone numbers fromlandline and cell phone exchanges throughout the UnitedStates were conducted. One individual per household wasselected 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, selected from U.S. Census tracts
with higher than an 8 percent concentration of this group.
A list sample of Asian Americans was also utilized tooversample this group. A general population weight wasused to adjust for number of adults in the household andtelephone usage; the second stage of this weight balanced
the sample to estimated U.S. population characteristics.
A weight for the caregiver sample accounted for theincreased likelihood of female and white respondents inthe caregiver sample. Sampling weights were also createdto 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 andinterviewing were conducted by Abt SRBI of New York.
A15. Number of hours of unpaid care: To calculate this number,
the Alzheimer’s Association used data from a follow-up analysisof results from the 2009 NAC/AARP national telephone survey(data provided under contract by Matthew Greenwald andAssociates, Nov. 11, 2009). These data show that caregiversof people with Alzheimer’s or other dementias provided anaverage of 21.9 hours a week of care, or 1,139 hours per
year. The number of family and other unpaid caregivers(16.2495 million)A13 was multiplied by the average hours ofcare per year, which totals 18.505 billion hours of care. Thisis slightly lower than the total resulting from multiplying
1,139 by 16.2495 million because of rounding.
A16. Value of unpaid caregiving: To calculate this number, theAlzheimer’s Association used the method of Amo andcolleagues. 579 This method uses the average of the federal
minimum hourly wage ($7.25 in 2018) and the mean hourly
wage of home health aides ($18.02 in July 2018). 580 The
average is $12.64, which was multiplied by the number ofhours of unpaid care (18.505 billion) to derive the total valueof unpaid care ($233.903 billion; this is slightly higher than
the total resulting from multiplying $12.64 by 18.505 billion
because 18.505 is a rounded number for the hours of
unpaid care).
A17. Higher health care costs of Alzheimer’s caregivers: This figure
is based on a methodology originally developed by Brent
Fulton, Ph.D., for The Shriver Report: A Woman’s Nation
Takes on Alzheimer’s. A survey of 17,000 employees of amultinational firm based in the United States estimatedthat caregivers’ health care costs were 8 percent higher
than non-caregivers’. 581 To determine the dollar amountrepresented by that 8 percent figure nationally and in eachstate, the 8 percent figure and the proportion of caregivers
from the 2009 BRFSSA13 were used to weight each state’s

70

caregiver and non-caregiver per capita personal healthcare spending in 2014, 582 inflated to 2018 dollars. The dollar
amount difference between the weighted per capita personal
health care spending of caregivers and non-caregivers in eachstate (reflecting the 8 percent higher costs for caregivers)
produced the average additional health care costs for
caregivers in each state. Nationally, this translated into an
average of $727. The amount of the additional cost in eachstate, which varied by state from a low of $540 in Utah toa high of $1,084 in the District of Columbia, was multipliedby the total number of unpaid Alzheimer’s and dementia
caregivers in that state A13 to arrive at that state’s total
additional health care costs of Alzheimer’s and other dementia
caregivers as a result of being a caregiver. The combined total
for all states was $11.789 billion. Fulton concluded that this is“likely to be a conservative estimate because caregiving forpeople with Alzheimer’s is more stressful than caregiving formost people who don’t have the disease.”583
A18. 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 healthcare, long-term care and hospice — as well as state-by-state
Medicaid spending — for people with Alzheimer’s and otherdementias. 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 purposesof the data presented in this report, the following parameters ofthe 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 the2008 MCBS; (2) prevalence among older adults was assumed toequal the prevalence levels from Hebert and colleagues51 andincluded in this report (5.8 million in 2019), A2 rather than theprevalence estimates derived by the model itself; (3) estimatesof inflation and excess cost growth reflect the most recent
relevant estimates from the cited sources (the Centers for
Medicare & Medicaid Services [CMS] actuaries and theCongressional Budget Office); and (4) the most recent (2014)
state-by-state data from CMS on the number of nursing homeresidents and percentage with moderate and severe cognitive
impairment were used in lieu of 2012 data.
A19. All cost estimates were inflated to year 2018 dollars using theConsumer Price Index (CPI): All cost estimates were inflatedusing the seasonally adjusted average prices for medical careservices 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.
A20. Medicare Current Beneficiary Survey Report: These data comefrom an analysis of findings from the 2011 Medicare Current
Beneficiary Survey (MCBS). The analysis was conducted for the
Alzheimer’s Association by Avalere Health.466 The MCBS, acontinuous survey of a nationally representative sample ofabout 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 threetimes 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 anotherresidential care facility, such as an assisted living residence,
retirement home or a long-term care unit in a hospital ormental health facility, MCBS interviews are conducted with astaff member designated by the facility administrator as themost appropriate to answer the questions. Data from the MCBS

Alzheimer’s Association. 2019 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2019;15(3):321-87.

analysis that are included in 2019 Alzheimer’s Disease Facts andFigures 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 tothis question were accepted.
Survey participants who were living in a nursing home orother 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 witha 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 healthcare, 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 from2011 and reported in 2018 dollars.
A21. Differences in estimated costs reported by Hurd and colleagues:
Hurd and colleagues465 estimated per-person costs using datafrom participants in ADAMS, a cohort in which all individuals
underwent diagnostic assessments for dementia. 2019
Alzheimer’s Disease Facts and Figures estimated per-person
costs using data from the Medicare Current Beneficiary Survey(MCBS). 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 ofeveryone in the study, is more likely than MCBS to haveidentified 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 morecostly, illness. A second reason is that the Hurd et al. estimatedcosts reflect an effort to isolate the incremental costs associatedwith Alzheimer’s and other dementias (those costs attributed
only to dementia), while the per-person costs in 2019 Alzheimer’s
Disease Facts and Figures incorporate all costs of caring forpeople with the disease (regardless of whether the expenditure
was related to dementia or a coexisting condition).
A22. Alzheimer's Association Consumer and Primary Care Physician
Cognitive Assessment Surveys: The consumer survey was
conducted by Versta Research from December 13, 2018, throughDecember 26, 2018. The survey was offered in English andSpanish and as either an online Web survey or a phone survey.
The 1,954 respondents had the following demographics:
55 percent were female and 45 percent were male. Forty-one
percent were age 75 and older, 33 percent were age 65-69, and26 percent were age 70-74. Thirty-eight percent resided in theSouth, 22 percent in the West, 21 percent in the Midwest, and19 percent in the Northeast. Forty-two percent had an annual
household income below $40,000, 30 percent had an income
between $40,000 and $74,999, and 28 percent had an income
above $75,000. Seventy-seven percent of respondents identified
as white and non-Hispanic, 9 percent as black and non-Hispanic,and 8 percent as Hispanic. Seventy-six percent were retired, and17 percent were working. The primary care physician survey was
conducted by Versta Research from December 10, 2018, throughJanuary 8, 2019. Of the 1,000 respondents, 68 percent spent lessthan 90 percent of their professional time in direct patient care,while 32 percent spent between 90 and 100 percent of theirtime in direct patient care. On average, 49 percent of theirpatients were age 18-64 and 42 percent were age 65 andolder. Thirty-two percent had been in practice for 15-24 years,
31 percent for fewer than 15 years, 24 percent for 25-34 years,
and 14 percent for 35 years or more. Eighty-four percent had
office-based practices, and 14 percent had hospital-based

practices. Fifty-one percent had a primary medical specialty offamily medicine, 46 percent specialized in internal medicine, and3 percent were general practitioners. Thirty-six percent ofrespondents resided in the South, 23 percent in the West,22 percent in the Midwest, and 19 percent in the Northeast.
A23. Additional structured assessments used by primary care
physicians: Additional responses, ranked by the percentageof participants who selected that choice, are shown below.
Participants were allowed to select more than one answer,
so percentages do not add up to 100.
••••Montreal Cognitive Assessment (MoCA): 25 percent
Memory Impairment Screen (MIS): 22 percent)General Practitioner Assessment of Cognition (GPCog):
12 percent
Cambridge Cognitive Examination (CAMCOG): 7 percent

A24. Other reasons primary care physicians choose not to assess:
Additional responses, grouped by theme, are shown below.
Participants were allowed to select more than one answer, so
percentages do not add up to 100. Concerns about the patient:
Few services are available for diagnosed patients (32 percent);
Diagnosis of cognitive impairment may be stigmatizing (25percent); Early diagnosis does not provide benefits (19 percent).
Lack of confidence in assessing: Specialists are better equipped toassess and diagnose (38 percent); Cognitive assessments have highrates of false positive or negatives (28 percent); Lack of training or
confidence in performing such assessments (25 percent).
Business concerns: Lack of financial reimbursement for time spent
discussing results (22 percent); Lack of financial reimbursement
for performing an assessment (21 percent); Follow-up care fordiagnosed patients would strain primary care resources (17%).
Difficulties with patients: Managing patients with cognitive
impairment is difficult or time consuming (29 percent); Disclosing
a diagnosis to patients is difficult or time consuming (24 percent).
A25. Other reasons primary care physicians choose not to disclose:
Additional responses, grouped by theme, are shown below.
Participants were allowed to select more than one answer, so
percentages do not add up to 100. Concerns about the patient:
Early disclosure of results may be stigmatizing (44 percent);
Few services are available for diagnosed patients (40 percent);
Early disclosure does not provide benefits to a patient(29 percent). Lack of confidence or expertise: Disclosing results
is difficult (44 percent); Specialists are better equipped to discuss
results (43 percent); Do not feel equipped to address potential
implications, such as employment, driving, etc. (34 percent);
Lack of training or confidence in disclosing results (30 percent).
Business Concerns: Lack of time during visits (40 percent);
Follow-up care for diagnosed patients would strain primary careresources (24 percent); Lack of financial reimbursement for timespent discussing results (23 percent). Difficulties with Patients:
The patient refusal rate for follow up testing is high (44 percent);
Managing patients with cognitive impairment is difficult or time
consuming (36 percent).
A26. Additional reasons seniors believe early diagnosis is important:
Additional responses, ranked by the percentage of participants
who selected that choice: It allows for earlier treatment ofsymptoms with medication or other interventions (93 percent);
A person can begin health measures to preserve existing cognitive
function for as long as possible (92 percent); It helps to understandwhat is happening (91 percent); It allows the person and their family
to plan for the future (91 percent); It allows the person to be tested
and treated for reversible causes of thinking or memory problems(91 percent); It helps a person address potential safety issues
ahead of time (90 percent); It encourages the person and his or
her family to seek support and education (89 percent); It allows formore time to assemble medical and caregiving teams (83 percent);
It relieves concerns about other things that might be wrong(76 percent); It allows the person to participate in clinical trials andother research (71 percent). Participants were allowed to selectmore than one answer, so percentages do not add up to 100.

Appendices71

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The Alzheimer's Association acknowledges
the contributions of Joseph Gaugler, Ph.D.,
Bryan James, Ph.D., Tricia Johnson, Ph.D.,
Allison Marin, Ph.D., and Jennifer Weuve,
M.P.H., Sc.D., in the preparation of2019 Alzheimer’s Disease Facts and Figures.

87The Alzheimer’s Association is the leading voluntary health organizationin Alzheimer’s care, support and research. Our mission is to eliminate
Alzheimer’s disease through the advancement of research; to provide
and enhance care and support for all affected; and to reduce the risk ofdementia through the promotion of brain health.
Our vision is a world without Alzheimer’s disease.®

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