DOI: 10.1002/alz.

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A L Z H E I M E R ’ S A S S O C I AT I O N R E P O R T

2021 Alzheimer’s disease facts and figures

Abstract
This article describes the public health impact of Alzheimer’s disease (AD),
including incidence and prevalence, mortality and morbidity, use and costs of care,
and the overall impact on caregivers and society. The Special Report discusses the
challenges of providing equitable health care for people with dementia in the United
States. An estimated 6.2 million Americans age 65 and older are living with Alzheimer’s
dementia today. This number could grow to 13.8 million by 2060 barring the develop-
ment of medical breakthroughs to prevent, slow or cure AD. Official death certificates
recorded 121,499 deaths from AD in 2019, the latest year for which data are available,
making Alzheimer’s the sixth-leading cause of death in the United States and the fifth-
leading cause of death among Americans age 65 and older. Between 2000 and 2019,
deaths from stroke, heart disease and HIV decreased, whereas reported deaths from
AD increased more than 145%. This trajectory of deaths from AD was likely exacer-
bated in 2020 by the COVID-19 pandemic. More than 11 million family members and
other unpaid caregivers provided an estimated 15.3 billion hours of care to people with
Alzheimer’s or other dementias in 2020. These figures reflect a decline in the number
of caregivers compared with a decade earlier, as well as an increase in the amount of
care provided by each remaining caregiver. Unpaid dementia caregiving was valued
at $256.7 billion in 2020. Its costs, however, extend to family caregivers’ increased
risk for emotional distress and negative mental and physical health outcomes — costs
that have been aggravated by COVID-19. Average per-person Medicare payments
for services to beneficiaries age 65 and older with AD or other dementias are more
than three times as great as payments for beneficiaries without these conditions, and
Medicaid payments are more than 23 times as great. Total payments in 2021 for health
care, long-term care and hospice services for people age 65 and older with dementia
are estimated to be $355 billion. Despite years of efforts to make health care more
equitable in the United States, racial and ethnic disparities remain — both in terms of
health disparities, which involve differences in the burden of illness, and health care
disparities, which involve differences in the ability to use health care services. Blacks,
Hispanics, Asian Americans and Native Americans continue to have a higher burden of
illness and lower access to health care compared with Whites. Such disparities, which
have become more apparent during COVID-19, extend to dementia care. Surveys
commissioned by the Alzheimer’s Association recently shed new light on the role of
discrimination in dementia care, the varying levels of trust between racial and ethnic
groups in medical research, and the differences between groups in their levels of
concern about and awareness of Alzheimer’s disease. These findings emphasize the

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need to increase racial and ethnic diversity in both the dementia care workforce and in
Alzheimer’s clinical trials.

KEYWORDS
Alzheimer’s dementia, Alzheimer’s disease, Biomarkers, Caregivers, COVID-19, Dementia, Diag-
nostic criteria, Discrimination, Diversity, Equity, Ethnicity, Family caregiver, Health care costs,
Health care disparities, Health care expenditures, Health care professional, Health disparities,
Implicit bias, Incidence, Long-term care costs, Medicaid spending, Medicare spending, Morbidity,
Mortality, Prevalence, Race, Risk factors, Spouse caregiver

1 ABOUT THIS REPORT When possible, specific information about Alzheimer’s disease is
provided; in other cases, the reference may be a more general one of
2021 Alzheimer’s Disease Facts and Figures is a statistical resource for “Alzheimer’s or other dementias.”
U.S. data related to Alzheimer’s disease, the most common cause of
dementia. Background and context for interpretation of the data are
contained in the Overview. Additional sections address prevalence, 2 OVERVIEW OF ALZHEIMER’S DISEASE
mortality and morbidity, caregiving and use and costs of health care and
services. A Special Report examines race, ethnicity and Alzheimer’s in Alzheimer’s disease is a type of brain disease, just as coronary artery
America. disease is a type of heart disease. It is also a progressive disease, mean-
ing that it becomes worse with time. Alzheimer’s disease is thought
to begin 20 years or more before symptoms arise.1–8 It starts with
1.1 Specific information in this report
changes in the brain that are unnoticeable to the person affected. Only
after years of brain changes do individuals experience noticeable symp-
Specific information in this year’s Alzheimer’s Disease Facts and Figures
toms such as memory loss and language problems. Symptoms occur
includes:
because nerve cells (neurons) in parts of the brain involved in think-
∙ Brain changes that occur with Alzheimer’s disease. ing, learning and memory (cognitive function) have been damaged or
∙ Risk factors for Alzheimer’s dementia. destroyed. As the disease progresses, neurons in other parts of the
∙ Number of Americans with Alzheimer’s dementia nationally and for brain are damaged or destroyed as well. Eventually, neurons in parts

each state. of the brain that enable a person to carry out basic bodily functions,
∙ Lifetime risk for developing Alzheimer’s dementia. such as walking and swallowing, are affected. Individuals become bed-
∙ Proportion of women and men with Alzheimer’s and other demen- bound and require around-the-clock care. Alzheimer’s disease is ulti-

tias. mately fatal.

∙ Number of deaths due to Alzheimer’s disease nationally and for each
state, and death rates by age.
∙ The effect of COVID-19 on deaths from Alzheimer’s disease. 2.1 Alzheimer’s disease or dementia?
∙ Number of family caregivers, hours of care provided, and economic
value of unpaid care nationally and for each state. Many people wonder what the difference is between Alzheimer’s dis-
∙ The health and economic impact of caregiving on caregivers. ease and dementia. Dementia is an overall term for a particular group
∙ The impact of COVID-19 on dementia caregiving. of symptoms. The characteristic symptoms of dementia are difficul-
∙ National cost of care for individuals with Alzheimer’s or other ties with memory, language, problem-solving and other thinking skills

dementias, including costs paid by Medicare and Medicaid and costs that affect a person’s ability to perform everyday activities. Dementia

paid out of pocket. has many causes (see Table 1). Alzheimer’s disease is the most common
∙ Medicare payments for people with dementia compared with people cause of dementia. In this report, Alzheimer’s dementia refers to demen-

without dementia. tia that is caused by, or believed to be caused by, the brain changes of
∙ Types of discrimination experienced by Alzheimer’s and dementia Alzheimer’s disease.

caregivers.
∙ Racial and ethnic attitudes about medical research and clinical trial
participation. 2.2 Brain changes of Alzheimer’s disease

The Appendices detail sources and methods used to derive statistics A healthy adult brain has about 100 billion neurons, each with
in this report. long, branching extensions. These extensions enable individual
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TA B L E 1 Common Causes of Dementia and Associated Characteristics

Cause Characteristics
Alzheimer’s disease Alzheimer’s disease is the most common cause of dementia, accounting for an estimated 60% to 80% of cases. Recent large
autopsy studies show that more than 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 cerebrovascular disease or Lewy
body disease.11–12 This is called mixed pathologies, 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 are accompanied by the
death of neurons and damage to brain tissue. 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/or brain tissue is injured
disease from not receiving enough blood, oxygen or nutrients. People with dementia whose brains show evidence of
cerebrovascular disease are said to have vascular dementia. About 5% to 10% of individuals with dementia show evidence
of vascular dementia alone.11–12 However, it is more common as a mixed pathology, with most people living with dementia
showing the brain changes of cerebrovascular disease and Alzheimer’s disease.11–12
Impaired judgment or impaired ability to make decisions, plan or organize may be the initial symptom, but memory may also be
affected, especially when the brain changes of other causes of dementia are present. In addition to changes in cognitive
function, people with vascular dementia commonly have difficulty with motor function, especially slow gait and poor
balance.
Vascular dementia occurs most commonly from blood vessel blockage, such as that which occurs with stroke, 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 disease Lewy bodies are abnormal aggregations (or clumps) of the protein alpha-synuclein in neurons. When they develop in a part of
the brain called the cortex, dementia can result. This is called dementia with Lewy bodies or DLB. People with DLB have
some of the symptoms common in Alzheimer’s, but are more likely to have initial or early symptoms of sleep disturbance,
well-formed visual hallucinations and visuospatial impairment. These symptoms may occur in the absence of significant
memory impairment but memory loss often occurs, especially when the brain changes of other causes of dementia are
present.
About 5% of individuals with dementia show evidence of DLB alone, but most people with DLB also have Alzheimer’s disease
pathology.
Frontotemporal lobar FTLD includes dementias such as behavioral-variant FTLD, primary progressive aphasia, Pick’s disease, corticobasal
degeneration degeneration and progressive supranuclear palsy.
(FTLD) Typical early symptoms include marked changes in personality and behavior and/or difficulty with producing or
comprehending 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 these regions
become markedly atrophied (shrunken). In addition, the upper layers of the cortex typically become soft and spongy and
have abnormal protein inclusions (usually tau protein or the transactive response DNA-binding protein, TDP-43).
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% of people with FTLD are ages 45 to 60.13 Scientists think that FTLD is the most
common cause of dementia in people younger than 60.13 In a systematic review, FTLD accounted for about 3% of dementia
cases in studies that included people 65 and older and about 10% of dementia cases in studies restricted to those younger
than 65.14
Parkinson’s disease Problems with movement (slowness, rigidity, tremor and changes in gait) are common symptoms of PD. Cognitive symptoms
(PD) develop either just before movement symptoms or later in the disease.
In PD, clumps of the protein alpha-synuclein appear in an area deep in the brain called the substantia nigra. These clumps are
thought to cause degeneration of the nerve cells that produce dopamine.15
As PD progresses, alpha-synuclein can also accumulate in the cortex of the brain (similar to dementia with Lewy bodies).
Dementia may result.
Hippocampal HS is the hardening of tissue in the hippocampus of the brain. The hippocampus plays a key role in forming memories. The
sclerosis (HS) most pronounced symptom of HS is memory loss, and individuals may be misdiagnosed as having Alzheimer’s disease.
HS brain changes are often accompanied by accumulations of a misfolded form of a protein called TDP-43.
HS is a common cause of dementia in the ”oldest-old,” individuals age 85 or older.
Mixed pathologies When an individual shows the brain changes of more than one cause of dementia, mixed pathologies are considered the cause.
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 more than 50% of people with
dementia who were studied at Alzheimer’s Disease Research Centers having pathologic evidence of more than one cause of
dementia.12 In community-based studies, the percentage of mixed dementia cases is considerably higher.11 The likelihood of
having mixed dementia increases with age and is highest in people age 85 or older.16-17
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neurons to form connections with other neurons. At such connections, 2.3 Mixed dementia
called synapses, information flows in tiny bursts of chemicals that
are released by one neuron and detected by another neuron. The Many people with dementia have brain changes associated with more
brain contains about 100 trillion synapses. They allow signals to travel than one cause of dementia.11,18–23 This is called mixed dementia.
rapidly through the brain, and the information they carry creates the Some studies11,12 report that the majority of people with the brain
cellular basis of memories, thoughts, sensations, emotions, movements changes of Alzheimer’s also have the brain changes of a second cause
and skills. of dementia on autopsy. One autopsy study showed that of 447 older
The accumulation of the protein fragment beta-amyloid into clumps people who were believed to have Alzheimer’s dementia when they
(called beta-amyloid plaques) outside neurons and the accumulation of died, only 3% had the brain changes of Alzheimer’s disease alone,
an abnormal form of the protein tau (called tau tangles) inside neurons 15% had the brain changes of a different cause of dementia, and 82%
are two of several brain changes associated with Alzheimer’s. had the brain changes of Alzheimer’s plus at least one other cause of
Plaques and smaller accumulations of beta-amyloid called oligomers dementia.11 Studies suggest that mixed dementia is the norm, and the
may contribute to the damage and death of neurons (neurode- number of distinct combinations of mixed dementia is extensive.24–25
generation) by interfering with neuron-to-neuron communication at Mixed dementia is common at advanced ages.18,26 For example, the
synapses. Inside neurons, tau tangles block the transport of nutri- oldest-old, those age 85 or older, are more likely to have evidence of
ents and other molecules essential for normal function and neuron two or more causes of dementia than those younger than 85.16–17 Hav-
survival. Although the complete sequence of events is unclear, beta- ing Alzheimer’s brain changes plus another type of brain change makes
amyloid may begin accumulating before abnormal tau, and increasing it more likely that a person will show dementia symptoms in their
beta-amyloid accumulation is associated with subsequent increases in lifetime11,18 compared with someone with Alzheimer’s brain changes
tau.9,10 alone. It may also account for the wide variety of memory and thinking
Other brain changes associated with Alzheimer’s include inflam- problems experienced by people living with dementia.
mation and atrophy (decreased brain volume). The presence of toxic
beta-amyloid and tau proteins are believed to activate immune sys-
tem cells in the brain called microglia. Microglia try to clear the toxic 2.4 Alzheimer’s disease continuum
proteins as well as widespread debris from dead and dying cells.
Chronic inflammation may set in when the microglia can’t keep up The progression of Alzheimer’s disease from brain changes that are
with all that needs to be cleared. Atrophy occurs because of cell loss. unnoticeable to the person affected to brain changes that cause prob-
Normal brain function is further compromised in Alzheimer’s disease lems with memory and eventually physical disability is called the
by decreases in the brain’s ability to metabolize glucose, its main Alzheimer’s disease continuum.
fuel. These brain changes are considered biomarkers of Alzheimer’s. On this continuum, there are three broad phases: preclinical
Biomarkers are biological changes that can be measured to indicate the Alzheimer’s disease, mild cognitive impairment (MCI) due to
presence or absence of a disease or the risk of developing a disease. Alzheimer’s disease and dementia due to Alzheimer’s disease (see
For example, the level of glucose in blood is a biomarker of diabetes, Figure 1).27–30 The Alzheimer’s dementia phase is further broken
and cholesterol level is a biomarker of one’s risk of cardiovascular down into the stages of mild, moderate and severe, which reflect the
disease. degree to which symptoms interfere with one’s ability to carry out
A study7 of people with rare genetic mutations that cause everyday activities.
Alzheimer’s, called dominantly inherited Alzheimer’s disease (DIAD), While we know the continuum starts with preclinical Alzheimer’s
found that levels of beta-amyloid in the brain were significantly and ends with severe Alzheimer’s dementia, how long individuals spend
increased starting 22 years before symptoms were expected to in each part of the continuum varies. The length of each phase of
develop (individuals with these genetic mutations usually develop the continuum is influenced by age, genetics, biological sex and other
symptoms at the same or nearly the same age as their parent with factors.31
Alzheimer’s). Glucose metabolism began to decrease 18 years before
expected symptom onset, and brain atrophy began 13 years before
expected symptom onset. Another study1 of people with DIAD found 2.4.1 Alzheimer’s begins before dementia
abnormal levels of the neurofilament light chain protein, a biomarker
of neurodegeneration, 22 years before symptoms were expected to In the past, Alzheimer’s disease was often used to describe the dementia
develop. A third study2 found that levels of two types of tau pro- phase of the disease. Today we know that dementia is only one part of
tein begin to increase when beta-amyloid starts clumping together as the disease. It is preceded by mild cognitive impairment (MCI), a period
amyloid plaques. Levels of these types of tau increase as early as two when individuals have subtle cognitive changes that do not interfere
decades before the characteristic tau tangles of Alzheimer’s begin to with everyday activities. When biomarker tests show that individuals
appear. with MCI have the brain changes of Alzheimer’s disease, they are said
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FIGURE 1 Alzheimer’s disease (AD) continuum. Although these arrows are of equal size, the components of the AD continuum are not equal in
duration

to have MCI due to Alzheimer’s disease, another part of the Alzheimer’s The mild changes in thinking abilities occur when the brain can no
disease continuum. longer compensate for the damage and death of nerve cells caused by
MCI is a key area of interest to researchers involved in drug develop- Alzheimer’s disease.
ment. Because individuals with MCI are still able to function indepen- Among those with MCI, about 15% develop dementia after two
dently, a treatment that prevents MCI from progressing to dementia years.35 About one-third (32%) of individuals with MCI develop
would have a significant impact on quality of life, caregiver burden, and Alzheimer’s dementia within five years’ follow-up.36 It’s important
use and cost of care. to note that some individuals are diagnosed as having MCI several
years after cognitive decline began, and these individuals are likely to
develop dementia sooner than those whose cognitive decline is more
recent. It’s also important to note that some individuals with MCI
2.4.2 Preclinical Alzheimer’s disease
revert to normal cognition or do not have additional cognitive decline.
In other cases, such as when a medication inadvertently causes cogni-
In this phase, individuals have measurable brain changes that indi-
tive changes, MCI is mistakenly diagnosed and cognitive changes can
cate the earliest signs of Alzheimer’s disease (biomarkers), but they
be reversed. Identifying which individuals with MCI are more likely to
have not yet developed symptoms such as memory loss. Examples
develop dementia is a major goal of current research.
of Alzheimer’s biomarkers include abnormal levels of beta-amyloid as
shown on positron emission tomography (PET) scans32 and in analysis
of cerebrospinal fluid (CSF), and decreased metabolism of glucose as
2.4.4 Dementia due to Alzheimer’s disease
shown on PET scans. When the early changes of Alzheimer’s occur, the
brain compensates for them, enabling individuals to continue to func-
Dementia due to Alzheimer’s disease, or Alzheimer’s dementia, is
tion normally.
characterized by noticeable memory, thinking or behavioral symp-
While research settings have the tools and expertise to identify
toms that impair a person’s ability to function in daily life, com-
some of the early brain changes of Alzheimer’s, additional research
bined with biomarker evidence of Alzheimer’s-related brain changes.
is needed to fine-tune the tools’ accuracy before they become avail-
As Alzheimer’s progresses, individuals commonly experience multiple
able for widespread use in hospitals, doctors’ offices and other clinical
types of symptoms that change with time. These symptoms reflect the
settings. It is important to note that not all individuals with evidence
degree of damage to nerve cells in different parts of the brain. The
of Alzheimer’s-related brain changes go on to develop symptoms of
pace at which symptoms of dementia advance from mild to moderate
MCI or dementia due to Alzheimer’s.33,34 For example, some individ-
to severe differs from person to person.
uals have beta-amyloid plaques at death but did not have memory or
thinking problems in life. Mild Alzheimer’s Dementia
In the mild stage of Alzheimer’s dementia, most people are able to func-
tion independently in many areas but are likely to require assistance
with some activities to maximize independence and remain safe. They
2.4.3 MCI due to Alzheimer’s disease
may still be able to drive, work and participate in favorite activities.

People with MCI due to Alzheimer’s disease have biomarker evidence Moderate Alzheimer’s Dementia
of Alzheimer’s brain changes plus subtle problems with memory and In the moderate stage of Alzheimer’s dementia, which is often the
thinking. These cognitive problems may be noticeable to the individ- longest stage, individuals may have difficulties communicating and
ual, family members and friends, but not to others, and they do not performing routine tasks, including activities of daily living (such
interfere with the individual’s ability to carry out everyday activities. as bathing and dressing); become incontinent at times; and start
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having personality and behavioral changes, including suspiciousness ropsychologists, geriatricians and geriatric psychiatrists) use a variety
and agitation. of approaches and tools to help make a diagnosis. They include the fol-
lowing:
Severe Alzheimer’s Dementia
In the severe stage of Alzheimer’s dementia, individuals need help ∙ Obtaining a medical and family history from the individual, including
with activities of daily living and are likely to require around-the-clock psychiatric history and history of cognitive and behavioral changes.
care. The effects of Alzheimer’s disease on individuals’ physical health ∙ Asking a family member to provide input about changes in thinking
become especially apparent in this stage. Because of damage to areas skills and behavior.
of the brain involved in movement, individuals become bed-bound. ∙ Conducting problem-solving, memory and other cognitive tests, as
Being bed-bound makes them vulnerable to conditions including blood well as physical and neurologic examinations.
clots, skin infections and sepsis, which triggers body-wide inflamma- ∙ Having the individual undergo blood tests and brain imaging to rule
tion that can result in organ failure. Damage to areas of the brain that out other potential causes of dementia symptoms, such as a tumor
control swallowing makes it difficult to eat and drink. This can result in or certain vitamin deficiencies.
individuals swallowing food into the trachea (windpipe) instead of the ∙ In some circumstances, using PET imaging of the brain to find
esophagus (food pipe). Because of this, food particles may be deposited out if the individual has high levels of beta-amyloid, a hallmark
in the lungs and cause lung infection. This type of infection is called of Alzheimer’s; normal levels would suggest Alzheimer’s is not the
aspiration pneumonia, and it is a contributing cause of death among cause of dementia.37
many individuals with Alzheimer’s (see Mortality and Morbidity sec- ∙ In some circumstances, using lumbar puncture to determine the lev-
tion). els of beta-amyloid and certain types of tau in CSF; normal levels
would suggest Alzheimer’s is not the cause of dementia.38

2.4.5 When dementia-like symptoms are not Although physicians can almost always determine if a person has
dementia dementia, it may be difficult to identify the exact cause. Alzheimer’s
disease is the most common cause of dementia, but most people with
It is important to note that some individuals have dementia-like the brain changes of Alzheimer’s also have the brain changes of another
symptoms without the progressive brain changes of Alzheimer’s or cause of dementia.25,39–40 Many individuals who would meet the diag-
other degenerative brain diseases. Causes of dementia-like symptoms nostic criteria for Alzheimer’s and other dementias are not diagnosed
include depression, untreated sleep apnea, delirium, side effects of by a physician,41–44 and fewer than half of Medicare beneficiaries who
medications, Lyme disease, thyroid problems, certain vitamin deficien- have a diagnosis of Alzheimer’s or another dementia in their Medicare
cies and excessive alcohol consumption. Unlike Alzheimer’s and other billing records report (or their caregiver reports, if the beneficiary’s
dementias, these conditions often may be reversed with treatment. cognitive impairment prevented him or her from responding) being told
Consulting a medical professional to determine the cause of symptoms of the diagnosis.45–48 It is important that individuals who are living
is critical to one’s physical and emotional well-being. with dementia receive a diagnosis and are aware of the diagnosis. It is
also important that individuals receive an accurate diagnosis to ensure
treatment and follow-up care are appropriate for their specific cause of
2.4.6 Normal age-related cognitive changes or dementia.
symptoms of dementia?

The differences between normal age-related cognitive changes and the 2.6 Treatment of Alzheimer’s dementia
cognitive changes of Alzheimer’s dementia can be subtle (see Table 2).
People experiencing cognitive changes should seek medical help to 2.6.1 Pharmacologic treatment
determine if the changes are normal for one’s age, reversible or a symp-
tom of Alzheimer’s or another dementia. The Medicare Annual Well- None of the pharmacologic treatments (drugs) available today for
ness Visit, available to all Medicare enrollees each year at no cost, Alzheimer’s dementia slow or stop the damage and destruction of
includes a cognitive evaluation and is an opportune time for individu- neurons that cause Alzheimer’s symptoms and make the disease
als age 65 or older to discuss cognitive changes with their physician. fatal. The U.S. Food and Drug Administration (FDA) has approved five
drugs for the treatment of Alzheimer’s — rivastigmine, galantamine,
donepezil, memantine, and memantine combined with donepezil. A
2.5 Diagnosis of dementia due to Alzheimer’s sixth drug, aducanumab, is under FDA review for potential approval
disease at this writing. Of these drugs, aducanumab is the only one that
may potentially slow the progression of Alzheimer’s, and it has been
There is no single test for dementia due to Alzheimer’s disease. Instead, tested only for individuals with MCI or early Alzheimer’s dementia.
physicians (often with the help of specialists such as neurologists, neu- With the exception of memantine, the remaining drugs temporarily
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TA B L E 2 Signs of Alzheimer’s Dementia Compared with Typical Age-Related Changes*

Signs of Alzheimer’s Dementia Typical Age-Related Changes

Memory loss that disrupts daily life: One of the most common signs of Alzheimer’s Sometimes forgetting names or appointments, but
dementia is memory loss, especially forgetting recently learned information. Others remembering them later.
include forgetting important dates or events, asking for the same information over
and over, and increasingly needing to rely on memory aids (for example, reminder
notes or electronic devices) or family members for things that used to be handled
on one’s own.
Challenges in planning or solving problems: Some people experience changes in their Making occasional errors when balancing a
ability to develop and follow a plan or work with numbers. They may have trouble checkbook.
following a familiar recipe, keeping track 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 Occasionally needing help to use the settings on a
Alzheimer’s often find it hard to complete daily tasks. Sometimes, people have trouble microwave or record a television show.
driving to a familiar location, managing a budget at work or remembering the rules of a
favorite game.
Confusion with time or place: People with Alzheimer’s can lose track of dates, seasons Getting confused about the day of the week but
and the passage of time. They may have trouble understanding something if it is not figuring it out later.
happening immediately. Sometimes they forget where they are or how they got there.
Trouble understanding visual images and spatial relationships: For some people, having Vision changes related to cataracts, glaucoma or
vision problems is a sign of Alzheimer’s. They may have difficulty reading, judging age-related macular degeneration.
distance and determining color or contrast, which may cause problems with driving.
New problems with words in speaking or writing: People with Alzheimer’s may have Sometimes having trouble finding the right word.
trouble following or joining a conversation. They may stop in the middle of a
conversation and have no idea how to continue or they may repeat themselves. They
may struggle with vocabulary, have problems finding the right word or call 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 Misplacing things from time to time and retracing
put things in unusual places and lose things and be unable to go back over their steps to steps to find them.
find them again. Sometimes, they accuse others of stealing. This may occur more
frequently over time.
Decreased or poor judgment: People with Alzheimer’s may experience changes in Making a bad decision once in a while.
judgment or decision-making. For example, they may use poor judgment when dealing
with money, giving large amounts to 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 Sometimes feeling weary of work, family and social
themselves from hobbies, social activities, work projects or sports. They may have obligations.
trouble keeping up with a favorite sports team or remembering how to complete a
favorite hobby. They may also avoid being social because of the changes they have
experienced.
Changes in mood and personality: The mood and personalities of people with Developing very specific ways of doing things and
Alzheimer’s can change. They can become confused, suspicious, depressed. fearful or becoming irritable when a routine is disrupted.
anxious. They may be easily upset at home, at work, with friends or in places where
they are out of their comfort zones.

*For more information about the symptoms of Alzheimer’s, visit alz.org/alzheimers-dementia/10_signs.

improve cognitive symptoms by increasing the amount of chemicals not successful and these symptoms have the potential to cause harm
called neurotransmitters in the brain. Memantine blocks certain to the individual or others, physicians may prescribe drugs approved
receptors in the brain from excess stimulation that can damage for similar symptoms in people with other conditions. A type of drug
nerve cells. The effectiveness of these drugs varies from person to called antipsychotics may be prescribed to treat hallucinations, aggres-
person. sion and agitation. However, research has shown that some antipsy-
No drugs are specifically approved by the FDA to treat behav- chotics are associated with an increased risk of stroke and death
ioral and psychiatric symptoms that may develop in the moderate and in individuals with dementia.49,50 The decision to use antipsychotics
severe stages of Alzheimer’s dementia. If nonpharmacologic therapy is must be considered with extreme caution. The FDA has ordered
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manufacturers to label such drugs with a “black box warning” about to improvements in specific symptoms); the range of dementia stages
their risks and a reminder that they are not approved to treat dementia represented (from mild to moderate to severe); the multiple types of
symptoms. dementia that may be present among participants in a particular study
Many factors contribute to the difficulty of developing effec- given the pervasiveness of mixed dementia; and the lack of a standard
tive treatments for Alzheimer’s. These include the slow pace of method for carrying out any individual therapy. With these multiple
recruiting sufficient numbers of participants and sufficiently diverse factors to consider, it is challenging to group together and compare
participants to clinical studies, gaps in knowledge about the pre- nonpharmacologic therapies.
cise molecular changes and biological processes in the brain that Nevertheless, researchers have pooled data from multiple studies
cause Alzheimer’s disease, and the relatively long time needed to of nonpharmacologic therapies to provide insight into their potential
observe whether an investigational treatment affects disease progres- effectiveness.
sion. In addition, because mixed dementia is so common, even more
brain changes than previously thought may be contributing to symp- ∙ A meta-analysis54 found that aerobic exercise and a combination of
toms, further complicating decisions about which brain changes to aerobic and non-aerobic exercise had positive effects on cognitive
target. function in people living with Alzheimer’s dementia. A systematic
Researchers believe that future treatments to slow or stop the review55 found that exercise has a positive effect on overall cogni-
progression of Alzheimer’s disease and preserve brain function may tive function and may slow the rate of cognitive decline in people
be most effective when administered early in the disease continuum, with Alzheimer’s dementia.
either at the MCI due to Alzheimer’s or preclinical Alzheimer’s phase. ∙ A systematic review56 found that cognitive stimulation had bene-
Biomarker tests, such as PET brain imaging and analysis of proteins ficial effects on cognitive function and some aspects of well-being
in blood and CSF, will be essential to identify which individuals are in in people with Alzheimer’s dementia. Another systematic review57
these phases of the continuum and should receive treatments when reported that cognitive stimulation was associated with improved
they are available. Biomarkers also will be critical for monitoring the scores on tests of depression in people with mild-to-moderate
effects of treatment. Biomarker tests are already playing an impor- Alzheimer’s dementia. A summary of systematic reviews58 reported
tant role in drug development because they enable researchers to that cognitive stimulation, music-based therapies and psychologi-
recruit into clinical trials only those individuals with the Alzheimer’s cal treatment (for example, cognitive behavioral therapy) improved
brain changes that a drug has been designed to affect.51 The most depression, anxiety and quality of life in people with dementia.
effective biomarker test or combination of tests may differ depend- ∙ A summary of systematic reviews59 of cognitive training for people
ing on where the individual is on the disease continuum and other with mild-to-moderate dementia found cognitive training may show
factors.52 some benefits in overall cognition that may last for at least a few
months.

2.6.2 Nonpharmacologic therapy The Lancet Commission 2020 report60 on dementia prevention,
intervention, and care recommends post-diagnostic care for people
Nonpharmacologic therapies are those that do not involve drugs. They with dementia that includes physical and mental health, social care, and
are often used for people with Alzheimer’s dementia with the goal support; management of neuropsychiatric symptoms, noting that mul-
of maintaining or improving cognitive function, overall quality of life ticomponent interventions are the treatments of choice to decrease
or the ability to perform activities of daily living. They also may be neuropsychiatric symptoms; and care for family caregivers, point-
used with the goal of reducing behavioral symptoms such as depres- ing out that specific interventions for family caregivers have long-
sion, apathy, wandering, sleep disturbances, agitation and aggression. lasting effects on depression and anxiety symptoms, increase qual-
A recent review and analysis of nonpharmacologic treatments for agi- ity of life, are cost-effective and might save money (see Caregiving
tation and aggression in people with dementia concluded that nonphar- section).
macologic interventions seemed to be more effective than pharmaco-
logic interventions for reducing aggression and agitation.53 Examples
of nonpharmacologic therapies include computerized memory train- 2.7 Active management of Alzheimer’s dementia
ing, listening to favorite music as a way to stir recall, and using special
lighting to lessen sleep disorders. As with current pharmacologic ther- Studies have consistently shown that active management of
apies, nonpharmacologic therapies do not slow or stop the damage and Alzheimer’s and other dementias can improve the quality of life
destruction of neurons that cause Alzheimer’s symptoms and make the of affected individuals and their caregivers.61–63 Active management
disease fatal. includes:
Determining the effectiveness of nonpharmacologic therapies can
be difficult because of the large number of unique therapies tested; ∙ Appropriate use of available treatment options.
the diversity of therapeutic aims (from improved overall quality of life ∙ Effective management of coexisting conditions.
 335

∙ Providing family caregivers with effective training in managing the TA B L E 3 Percentage of African Americans and European
day-to-day life of the care recipient. Americans with Specified APOE Pairs
∙ Coordination of care among physicians, other health care profes- APOE African European
sionals and lay caregivers. Pair Americans* Americans
∙ Participation in activities that are meaningful to the individual with e3/e3 45.2 63.4
dementia and bring purpose to his or her life. e3/e4 28.6 21.4
∙ Having opportunities to connect with others living with dementia;
e3/e2 15.1 10.2
support groups and supportive services are examples of such oppor-
e2/e4 5.7 2.4
tunities.
e4/e4 4.5 2.4
∙ Becoming educated about the disease.
∙ Planning for the future. e2/e2 0.7 0.2
74
Created from data from Rajan et al.
To learn more about Alzheimer’s disease, as well as practical infor- *Percentages do not total 100 due to rounding.

mation for living with Alzheimer’s and being a caregiver, visit alz.org.

than European Americans have at least one copy of the e4 allele (see
Table 3).74–76
2.8 Risk factors for Alzheimer’s dementia
Having the e4 form of APOE increases one’s risk of developing
Alzheimer’s compared with having the e3 form, but does not guaran-
The vast majority of people who develop Alzheimer’s dementia are
tee that an individual will develop Alzheimer’s. Having the e2 form
age 65 or older. This is called late-onset Alzheimer’s. Experts believe
may decrease one’s risk compared with having the e3 form. Those who
that Alzheimer’s, like other common chronic diseases, develops as a
inherit one copy of the e4 form have about three times the risk of devel-
result of multiple factors rather than a single cause. Exceptions are
oping Alzheimer’s compared with those with two copies of the e3 form,
cases of Alzheimer’s related to uncommon genetic changes that greatly
while those who inherit two copies of the e4 form have an eight- to
increase risk.
12-fold risk.77–79 In addition, those with the e4 form are more likely
to have beta-amyloid accumulation80 and Alzheimer’s dementia at a
younger age than those with the e2 or e3 forms of the APOE gene.81 A
2.8.1 Age, genetics and family history
meta-analysis including 20 published articles describing the frequency
of the e4 form among people in the United States who had been diag-
The greatest risk factors for late-onset Alzheimer’s are older age,64,65
nosed with Alzheimer’s found that 56% had one copy of the APOE-e4
genetics66,67 — especially the apolipoprotein e4 gene (APOE-e4) — and
gene, and 11% had two copies of the APOE-e4 gene.82 Another study
having a family history of Alzheimer’s.68–71
found that among 1,770 diagnosed individuals from 26 Alzheimer’s
Age Disease Research Centers across the United States, 65% had at least
Age is the greatest of these three risk factors. The percentage of peo- one copy of the APOE-e4 gene.83
ple with Alzheimer’s dementia increases dramatically with age: 5.3% of However, a recent study84 found that individuals with the APOE-e4
people age 65 to 74, 13.8% of people age 75 to 84 and 34.6% of people risk gene had a decreased risk of developing dementia if they had more
age 85 or older have Alzheimer’s dementia (see Prevalence section). years of early life education, had mentally challenging work in midlife,
The aging of the baby-boom generation will significantly increase the participated in leisure activities in late life, and/or had strong social net-
number of people in the United States with Alzheimer’s.72 However, works in late life.
it is important to note that Alzheimer’s dementia is not a normal part Studies of Alzheimer’s risk based on APOE status among Blacks
of aging,73 and older age alone is not sufficient to cause Alzheimer’s have had inconsistent results. For example, some have found that
dementia. having the e4 allele did not increase risk among Blacks,75,76,85 while

Genetics other studies have found that it significantly increased risk.86,87

Researchers have found several genes that increase the risk of More research is needed to better understand the genetic mecha-

Alzheimer’s. The APOE-e4 gene is the gene with the strongest impact nisms involved in Alzheimer’s risk among different racial and ethnic

on risk of late-onset Alzheimer’s. APOE-e4 provides the blueprint for groups.

a protein that transports cholesterol in the bloodstream. Everyone Family history

inherits one of three forms (alleles) of the APOE gene — e2, e3 or e4 A family history of Alzheimer’s is not necessary for an individual to
— from each parent, resulting in six possible APOE pairs: e2/e2, e2/e3, develop the disease. However, individuals who have a parent or sib-
e2/e4, e3/e3, e3/e4 and e4/e4. Researchers have found differences in ling (first-degree relative) with Alzheimer’s are more likely to develop
the frequency of these pairs in different racial and ethnic groups. For the disease than those who do not have a first-degree relative with
example, data show that a higher percentage of African Americans Alzheimer’s.68,77 Those who have more than one first-degree relative
336

with Alzheimer’s are at even higher risk.71 A large, population-based tors develop appears to affect dementia risk. For example, midlife
study found that having a parent with dementia increases risk indepen- obesity,103,106–109 hypertension,103,110–114 prehypertension (systolic
dent of known genetic risk factors such as APOE-e4.88 When diseases blood pressure from 120 to 139 mm Hg or diastolic pressure from 80
run in families, heredity (genetics) and shared non-genetic factors (for to 89 mm Hg)114 and high cholesterol115,116 are associated with an
example, access to healthy foods and habits related to physical activity) increased risk of dementia. Regarding hypertension, evidence from a
may play a role. large-scale clinical trial suggests that intensive medical treatment to
reduce blood pressure may safely decrease the occurrence of MCI and
dementia.117 In contrast to midlife, late-life obesity118 and hyperten-
2.8.2 Modifiable risk factors sion onset after age 80119 are associated with decreased risk of demen-
tia. It is possible that the disease causing dementia affects body mass
Although age, genetics and family history cannot be changed, other and blood pressure rather than the reverse. More research is needed
risk factors can be changed or modified to reduce the risk of cog- to understand why the effects of some modifiable risk factors may
nitive decline and dementia. Examples of modifiable risk factors are change with age.
physical activity, smoking, education, staying socially and mentally Building on the connection between heart health and brain health,
active, blood pressure, and diet. In fact, the 2020 recommendations researchers have found that factors that protect the heart may also
of The Lancet Commission on dementia prevention, intervention and protect the brain and reduce the risk of developing Alzheimer’s or
care60 suggest that addressing modifiable risk factors might pre- other dementias. Physical activity120–130 appears to be one of these
vent or delay up to 40% of dementia cases. Modifiable risk factors factors. Although researchers have studied a wide variety of exercises,
have been the subject of much research. In addition to The Lancet they do not yet know which specific types of exercises, what frequency
Commission report,60 the 2019 World Health Organization (WHO) of exercise or what duration of activity may be most effective in reduc-
recommendations89 to reduce risk of cognitive decline and dementia, ing risk. In addition to physical activity, emerging evidence suggests
an Alzheimer’s Association article90 evaluating the effects of modifi- that consuming a heart-healthy diet may be associated with reduced
able risk factors on cognitive decline and dementia, and a report from dementia risk.131–135 A heart-healthy diet emphasizes fruits, vegeta-
the National Academy of Medicine91 all point to the promising role bles, whole grains, fish, chicken, nuts and legumes while limiting satu-
of addressing these risk factors to reduce risk of dementia and cog- rated fats, red meat and sugar. A systematic review136 of the use of sup-
nitive decline. This section focuses on risk factors common to these plements, including vitamins C, D and E, omega-3 fatty acids and ginkgo
reports. biloba, found little to no benefit in preventing cognitive decline, MCI or
It is important to note that “reducing risk” of cognitive decline and Alzheimer’s dementia.
dementia is not synonymous with preventing cognitive decline and Researchers have begun studying combinations of health factors
dementia altogether. Individuals who take measures to reduce risk may and health behaviors (for example, blood pressure as a health factor
still develop dementia, but they may be less likely to develop it or they and physical activity as a health behavior) to learn whether combi-
may develop it later in life than they would have if they had not taken nations of risk factors better identify Alzheimer’s and dementia risk
steps to reduce their risk. It is also important to note that factors that than individual risk factors. They are also studying whether interven-
increase or decrease the risk of cognitive decline and dementia may ing on multiple risk factors simultaneously is more effective at reduc-
not necessarily do so by directly affecting the brain changes associated ing risk than addressing a single risk factor. Indeed, one such study,137
with Alzheimer’s disease.85 For example, it is possible that smoking the Finnish Geriatric Intervention Study to Prevent Cognitive Impair-
may contribute to cerebrovascular disease, which in turn increases the ment and Disability (FINGER), found that a multidomain intervention
risk of dementia, but it may not directly contribute to the development was associated with beneficial effects on cognitive function in older
of the amyloid plaques and tau tangles that characterize Alzheimer’s adults at high risk for cognitive decline and dementia. The success of
disease. FINGER has led to the launch of multidomain intervention studies in
other countries, including the Alzheimer’s Association’s U.S. Study to
Cardiovascular disease risk factors, physical activity, and diet
Protect Brain Health Through Lifestyle Intervention to Reduce Risk
Brain health is affected by the health of the heart and blood vessels.
(U.S. POINTER).138
Although it makes up just 2% of body weight, the brain consumes 20%
of the body’s oxygen and energy supplies.92 A healthy heart ensures Education
that enough blood is pumped to the brain, while healthy blood vessels People with more years of formal education are at lower risk for
enable the oxygen- and nutrient-rich blood to reach the brain so it can Alzheimer’s and other dementias than those with fewer years of for-
function normally. mal education.75,139–143 Some researchers believe that having more
Many factors that increase the risk of cardiovascular disease years of education builds “cognitive reserve.” Cognitive reserve refers
are also associated with a higher risk of dementia.93 These fac- to the brain’s ability to make flexible and efficient use of cognitive net-
tors include smoking94–98 and diabetes.99–102 Some studies propose works (networks of neuron-to-neuron connections) to enable a person
that impaired glucose processing (a precursor to diabetes) may also to continue to carry out cognitive tasks despite brain changes.144,145
increase risk for dementia.103–105 The age at which some risk fac- The number of years of formal education is not the only determinant
 337

of cognitive reserve. Having a mentally stimulating job and engaging ∙ Severe TBI is characterized by loss of consciousness or post-
in other mentally stimulating activities may also help build cognitive traumatic amnesia lasting 24 hours or more, or an initial Glasgow
reserve.146–149 score of 8 or less.
It is important to note that the underlying reason for the rela-
tionship between formal education and reduced Alzheimer’s risk is The risk of dementia increases with the number of TBIs
unclear. It is possible that the generally higher socioeconomic sta- sustained.173 Even those who experience mild TBI are at increased risk
tus of individuals with more years of formal education is a protec- of dementia compared with those who have not had a TBI. A recent
tive factor. Having fewer years of formal education is associated with study found that mild TBI is associated with a two-fold increase in the
lower socioeconomic status.150 This in turn may increase one’s likeli- risk of dementia diagnosis.178 Studies have also found that people with
hood of experiencing poor nutrition; decrease one’s ability to afford a history of TBI who develop Alzheimer’s do so at a younger age than
health care or medical treatments, such as treatments for cardiovas- those without a history of TBI.179,180 Whether TBI causes Alzheimer’s
cular disease risk factors that are so closely linked to brain health; disease, other conditions that lead to dementia, or both, is still being
and limit one’s access to physically safe housing and employment. The investigated.
latter could increase one’s risk of being exposed to substances that Chronic traumatic encephalopathy (CTE) is a neuropathologic diag-
are toxic to the nervous system such as air pollution,151 lead152 and nosis (meaning it is characterized by brain changes that can only be
pesticides.153 identified at autopsy) associated with repeated blows to the head, such
In addition, people with fewer years of education tend to have more as those that may occur while playing contact sports. Among former
cardiovascular risk factors for Alzheimer’s, including being less physi- amateur and professional football players, the risk of developing CTE,
cally active,154 having a higher risk of diabetes,155–157 and being more which is associated with dementia, increased 30% per year played.181
likely to have hypertension158 and to smoke.159 Currently, there is no test to determine if someone has CTE-related
brain changes during life. A review article indicates that the greatest
Social and cognitive engagement
risk factor for developing CTE-related brain changes is repetitive brain
Additional studies suggest that remaining socially and mentally active
trauma — repeated, forceful blows to the head that do not, individually,
throughout life may support brain health and possibly reduce the risk
result in symptoms.182 Like Alzheimer’s disease, CTE is characterized
of Alzheimer’s and other dementias.121,160–172 Socially and cognitively
by tangles of an abnormal form of the protein tau in the brain. Unlike
stimulating activity might help build cognitive reserve. However, it is
Alzheimer’s, beta-amyloid plaques are uncommon in CTE.183,184 How
also possible that undetected cognitive impairment decreases one’s
the brain changes associated with CTE are linked to cognitive or behav-
interest in and ability to participate in activities involving social and
ioral changes is unclear.
cognitive skills. In this case, the association may reflect the effect of
cognitive impairment on social and cognitive engagement rather than
Other modifiable risk factors
the effect of engagement on dementia risk. More research is needed to
Researchers are studying a variety of other potential modifiable risk
better understand the biological processes that link social and cogni-
factors. Among the many risk factors being studied are inadequate
tive engagement to dementia risk.
sleep or poor sleep quality,185 excessive alcohol use,186 depression187
Traumatic brain injury (TBI) and hearing impairment.188
TBI is the disruption of normal brain function caused by a blow or jolt In addition, a growing body of evidence indicates that critical ill-
to the head or penetration of the skull by a foreign object. TBI increases ness and medical encounters such as hospitalization in older peo-
the risk of dementia.173 ple increase their risk of long-term cognitive impairment.189–195 The
According to the Centers for Disease Control and Prevention (CDC), emergence of novel coronavirus disease in 2019 (COVID-19) has
nearly 3 million TBI-related emergency department visits, hospitaliza- resulted in tens of thousands of hospitalizations. This has the poten-
tions and deaths occurred in 2014, the latest year for which informa- tial to increase the number of cases of cognitive impairment follow-
tion is available.174 The leading causes of TBI that resulted in emer- ing critical illness. Furthermore, many of these individuals will receive
gency department visits were falls, being struck by an object and motor or have received mechanical ventilation, which increases one’s risk of
vehicle crashes.174 delirium,196 an acute state of short-term confusion that is a risk factor
Two ways to classify the severity of TBI are by the duration of loss for dementia.197–199
of consciousness or post-traumatic amnesia175 and by the individual’s There is also rapidly emerging evidence on how exposure to air pol-
initial score on the 15-point Glasgow Coma Scale.176 lution may be related to dementia risk. A number of different air pol-
lutants have been studied in relation to cognition, cognitive decline,
∙ Mild TBI (also known as a concussion) is characterized by loss of con- brain imaging and dementia itself. The most consistent and rigorous
sciousness or post-traumatic amnesia lasting 30 minutes or less, or results concern fine particulate matter air pollution, which consists of
an initial Glasgow score of 13 to 15; about 75% of TBIs are mild.177 tiny solid particles and liquid droplets generated by fuel combustion,
∙ Moderate TBI is characterized by loss of consciousness or post- fires, and processes that produce dust. Higher levels of long-term expo-
traumatic amnesia lasting more than 30 minutes but less than 24 sure to fine particulate matter air pollution is associated with worse
hours, or an initial Glasgow score of 9 to 12. cognitive function and cognitive decline.200–207
338

2.8.3 Uncommon genetic changes that greatly the potential to expand the field’s understanding of which therapies
increase risk may be most effective at which points in the Alzheimer’s disease
continuum.
Certain genetic mutations and the extra copy of chromosome 21 that However, a fuller understanding of Alzheimer’s — from its causes to
characterizes Down syndrome are uncommon genetic factors that how to prevent it, how to manage it and how to treat it — depends on
greatly influence Alzheimer’s risk. other crucial factors. Among these is the inclusion of participants from
diverse racial and ethnic groups in all realms of Alzheimer’s research.
Genetic mutations
Most of the research to date has not included sufficient numbers of
A small percentage of Alzheimer’s cases (an estimated 1% or less)208
Blacks, Hispanics, Asian Americans/Pacific Islanders and Native Amer-
develop as a result of mutations to any of three specific genes. A genetic
icans to be representative of the U.S. population. Moreover, because
mutation is an abnormal change in the sequence of chemical pairs that
Blacks and Hispanics are at increased risk for Alzheimer’s (see Preva-
make up genes. These mutations involve the gene for the amyloid pre-
lence section), their underrepresentation hampers the conduct of rig-
cursor protein (APP) and the genes for the presenilin 1 and presenilin 2
orous research to understand factors that may contribute to their
proteins. Those inheriting an Alzheimer’s mutation to these genes are
increased risk. Improving inclusion also increases the diversity of lived
virtually guaranteed to develop the disease if they live a normal life
experiences of participants (and investigators), which opens the door
span.209 Symptoms tend to develop before age 65, sometimes as young
to discovering environmental and societal factors that may influence
as age 30, while the vast majority of individuals with Alzheimer’s have
health behaviors and other factors that increase risk. It is important
late-onset Alzheimer’s.
that researchers identify risk factors that can be addressed to alter the
Trisomy in Down syndrome disparate burden of Alzheimer’s. Only by improving representation in
In Down syndrome, an individual is born with three copies of chromo- clinical trials, observational studies and other investigations will every-
some 21 (called trisomy 21) instead of two. People with Down syn- one have the potential to benefit from advances in Alzheimer’s science.
drome have an increased risk of developing Alzheimer’s, and this is
believed to be related to trisomy 21. Chromosome 21 includes the
3 PREVALENCE
gene that encodes for the production of APP, which in people with
Alzheimer’s is cut into beta-amyloid fragments that accumulate into
Millions of Americans are living with Alzheimer’s or other demen-
plaques. Having an extra copy of chromosome 21 may increase the pro-
tias. As the size of the U.S. population age 65 and older continues to
duction of beta-amyloid fragments in the brain.
increase, the number of Americans with Alzheimer’s or other demen-
Overall, people with Down syndrome develop Alzheimer’s at an
tias will grow. Both the number and proportion will escalate rapidly in
earlier age than people without Down syndrome. By age 40, most
coming years, as the population of Americans age 65 and older is pro-
people with Down syndrome have significant levels of beta-amyloid
jected to grow from 58 million in 2021 to 88 million by 2050.212,213 The
plaques and tau tangles in their brains.210 As with all adults, advanc-
baby-boom generation (Americans born between 1946 and 1964) has
ing age increases the likelihood that a person with Down syndrome
already begun to reach age 65 and beyond,214 the age range of great-
will exhibit symptoms of Alzheimer’s. According to the National Down
est risk of Alzheimer’s dementia215 ; in fact, the oldest members of the
Syndrome Society, about 30% of people with Down syndrome who
baby-boom generation turn age 75 in 2021.
are in their 50s have Alzheimer’s disease.211 About 50% of peo-
This section reports on the number and proportion of people with
ple with Down syndrome who are in their 60s have Alzheimer’s
Alzheimer’s dementia to describe the magnitude of the burden of
disease.211
Alzheimer’s on the community and health care systems. The preva-
lence of Alzheimer’s dementia refers to the number and proportion
of people in a population who have Alzheimer’s dementia at a given
2.9 Looking to the future
point in time. Incidence refers to the number or rate of new cases per
year. Estimates from selected studies on the number and proportion
With the discovery that Alzheimer’s may begin 20 years or more before
of people with Alzheimer’s or other dementias vary depending on how
the onset of symptoms, a substantial window of time has been opened
each study was conducted. Data from several studies are used in this
to intervene in the progression of the disease. During this window
section.
of time, advances in the identification of biomarkers for Alzheimer’s
will enable earlier detection of the disease, giving those affected the
opportunity to address modifiable risk factors that may delay cogni- 3.1 Prevalence of Alzheimer’s and other
tive decline and participate in clinical studies of potential new treat- dementias in the United States
ments. Biomarker advances will also accelerate the development of
these new treatments by enabling clinical trials to specifically recruit Based on updated calculations, an estimated 6.2 million Americans
individuals with the brain changes experimental therapies target. In age 65 and older are living with Alzheimer’s dementia in 2021.A1,216
addition, biomarker, basic science and other research advances offer Seventy-two percent are age 75 or older (Figure 2).216
 339

ing Alzheimer’s dementia based on symptoms do not have the bio-

logical brain changes of Alzheimer’s disease; that is, their dementia
is caused by something other than Alzheimer’s disease. Both autopsy
studies and clinical trials have found that 15% to 30% of individuals
who met the criteria for Alzheimer’s dementia based on symptoms did
not have Alzheimer’s-related brain changes.11,73,220–222 Thus, these
studies indicate that biomarker-based prevalence estimates — rather
than symptom-based prevalence estimates — will likely result in up
to a 30% decrease in prevalence estimates of Alzheimer’s dementia.
Another potential contributor to a decrease in prevalence estimates of
Alzheimer’s dementia is the use of multiple symptom-based longitudi-
nal studies when determining prevalence rather than one.A2,219
F I G U R E 2 Number and ages of people 65 or older with
Second, the estimate of how many people have Alzheimer’s dis-
Alzheimer’s dementia, 2021. Created from data from Rajan et al.A1,216
Percentages do not total 100 due to rounding ease (not just dementia due to Alzheimer’s disease) will be higher.
For decades it has been recognized that all individuals with demen-
tia pass through a precursor stage frequently referred to as mild cog-
Of the total U.S. population: nitive impairment (MCI). More recently, with the advent of biomark-
ers that detect elevated levels of the beta-amyloid and tau proteins
∙ More than 1 in 9 people (11.3%) age 65 and older has Alzheimer’s
that characterize Alzheimer’s, it is now possible to determine which
dementia.216
individuals diagnosed with MCI have MCI due to Alzheimer’s disease.
∙ The percentage of people with Alzheimer’s dementia increases with
As biomarker-based diagnoses become more common, individuals with
age: 5.3% of people age 65 to 74, 13.8% of people age 75 to 84,
MCI due to Alzheimer’s disease will be included in prevalence esti-
and 34.6% of people age 85 and older have Alzheimer’s dementia.216
mates of the number of Americans with Alzheimer’s disease.
People younger than 65 can also develop Alzheimer’s dementia, but
As reported in this section, the limited data available to date show
it is much less common and prevalence is uncertain.
that about half of individuals age 65 and older with MCI — roughly
5 million Americans — have MCI due to Alzheimer’s disease. Because
The estimated number of people age 65 and older with Alzheimer’s
MCI develops years before dementia, and potentially affects individu-
dementia comes from an updated study using the latest data from the
als before age 65, there are likely far more than 5 million Americans
2020 projections from the U.S. Census Bureau and the Chicago Health
with MCI due to Alzheimer’s disease.
and Aging Project (CHAP), a population-based study of chronic health
Lastly, the National Institute on Aging – Alzheimer’s Association
conditions of older people.216
(NIA-AA) Framework223 hypothesizes that there is an incipient and
National estimates of the prevalence of all dementias are not
silent stage of Alzheimer’s disease in which the individual appears not
available from CHAP, but they are available from other population-
to have the cognitive symptoms of either MCI or dementia. An esti-
based studies including the Aging, Demographics, and Memory Study
mate of the prevalence of “preclinical” Alzheimer’s disease population
(ADAMS), a nationally representative sample of older adults.A2,217,218
has been previously published,224 but we clearly need more research to
Based on estimates from ADAMS, 11% of people age 65 and older in
validate preclinical Alzheimer’s and determine how to measure it with
the United States have dementia.219
biomarkers that conclusively represent Alzheimer’s disease.
What does all this mean for future prevalence estimates? Preva-
3.1.1 Prevalence estimates lence estimates of Alzheimer’s disease reported in future Facts and Fig-
ures reports will continue to report clinically diagnosed individuals in
The 6.2 million prevalence estimate included in this section refers to the dementia stage, currently estimated to be 6.2 million Americans,
people age 65 and older who have Alzheimer’s dementia based on in addition to the best-available estimates of MCI due to Alzheimer’s
symptoms such as memory loss and difficulty thinking. It is based on disease. Facts and Figures will not include prevalence estimates for the
data from a single longitudinal study in which all individuals who exhib- preclinical Alzheimer’s disease stage until (1) there is conclusive evi-
ited the clinical symptoms of Alzheimer’s were classified as having dence of a connection between biomarkers in this silent stage and the
Alzheimer’s dementia. Future prevalence estimates will be different. development of MCI due to Alzheimer’s disease and (2) prevalence
First, the number of Americans with Alzheimer’s dementia (the 6.2 studies have then attempted to calculate the number of individuals
million figure reported here) is likely to be lower. This is because impacted.
future estimates of Alzheimer’s dementia are more likely to be Ultimately, with these refinements, future prevalence estimates of
based on whether individuals have the actual brain changes of Alzheimer’s disease will be higher, although estimates of Alzheimer’s
Alzheimer’s in addition to whether they have clinical changes in mem- dementia (the currently reported 6.2 million) will be lower. For exam-
ory, thinking and other cognitive skills. Evidence from biomarker-based ple, in 2021, biomarker-based estimates of Alzheimer’s disease could
studies11,73,220–222 indicates that some individuals counted as hav- result in up to 30% fewer individuals in the dementia stage of the
340

disease, leaving roughly 4 million Americans age 65 and older with underdiagnosed — and if it is diagnosed by a clinician, people are
Alzheimer’s dementia, while also including an additional 50% of those often unaware of their diagnosis — a large portion of Americans with
over age 65 with MCI (those with MCI due to Alzheimer’s disease). Alzheimer’s may not know they have it. For more detailed information
A conservative estimate of the number of people with MCI due to about detection of Alzheimer’s and other dementias in the primary care
Alzheimer’s disease is 5 million Americans. This would result in a very and clinical setting, see the Special Report from 2019 Alzheimer’s Dis-
rough current estimate of 9 million Americans with Alzheimer’s dis- ease Facts and Figures.228
ease. It should be noted that both symptom-based and biomarker- Since 2011, the Medicare Annual Wellness Visit has included a
based prevalence estimates will rapidly increase in the future due to required cognitive evaluation. A survey by the Alzheimer’s Associa-
growth in the proportion of Americans age 65 and over, the population tion found that only 1 in 3 older adults were aware that these visits
most at risk. should include a cognitive assessment.228 Furthermore, while 82% of
When epidemiological studies include biomarker-based diagnoses older adults believe it is important to have their memory and thinking
and a conclusive connection is shown between biomarkers and the checked, only 16% report having their memory and thinking checked.
preclinical stage, an Alzheimer’s disease prevalence estimate ought Most (93%) older adults said they trust their doctor to recommend
to include individuals throughout the continuum of Alzheimer’s dis- testing for memory and thinking problems; however, despite 94% of
ease: those with biomarker-confirmed Alzheimer’s dementia, those primary care physicians stating that it is important to assess all older
with biomarker-confirmed MCI due to Alzheimer’s disease, and those patients for cognitive impairment, fewer than half (47%) say it is their
with preclinical Alzheimer’s disease — making the true prevalence of standard protocol to do so. The primary reasons given by surveyed
Alzheimer’s disease even higher. physicians for not assessing older patients for cognitive impairment are
(1) the patient presents with no symptoms or complaints (68%) and
(2) lack of time (58%).
3.1.2 Mild cognitive impairment due to
Alzheimer’s disease
3.1.4 Prevalence of subjective cognitive decline
The number and proportion of older adults who have MCI due
to Alzheimer’s disease is currently difficult to estimate because
The experience of worsening or more frequent confusion or memory
it requires population-based prevalence measures of MCI and
loss (often referred to as subjective cognitive decline) is one of the ear-
Alzheimer’s biomarkers, and these studies are in their infancies.
liest warning signs of Alzheimer’s disease and may be a way to iden-
Furthermore, there is variation across studies in both the threshold of
tify people who are at high risk of developing Alzheimer’s or other
cognitive impairment required for an MCI diagnosis and the level of
dementias as well as MCI.229–233 Subjective cognitive decline refers to
biomarker burden that defines the presence of Alzheimer’s disease.
self-perceived worsening of memory and other thinking abilities by an
However, we can roughly estimate this prevalence indirectly using
individual, separate from cognitive testing, clinical diagnosis or anyone
multiple data sources. A systematic review of more than 30 studies
else noticing. Not all those who experience subjective cognitive decline
of MCI reported that 16.6% of people age 65 and older had MCI.35
go on to develop MCI or dementia, but many do.234–236 One study
Meanwhile, studies assessing biomarkers for Alzheimer’s disease with
showed those who over time consistently reported subjective cogni-
PET scans have reported that about half of people with MCI have
tive decline that they found worrisome were at higher risk for devel-
Alzheimer’s-related brain changes.225,226 Therefore, roughly 8% of
oping Alzheimer’s dementia.237 The Behavioral Risk Factor Surveil-
people age 65 and older — or approximately 5 million older Americans
lance System survey, which includes questions on subjective cognitive
— may have MCI due to Alzheimer’s disease. This prevalence esti-
decline, found that 11% of Americans age 45 and older reported sub-
mate needs to be confirmed with population-based studies involving
jective cognitive decline, but 54% of those who reported it had not
biomarkers.
consulted a health care professional.238 Individuals concerned about
declines in memory and other cognitive abilities should consult a health
3.1.3 Underdiagnosis of Alzheimer’s and other care professional.
dementias in the primary care setting

Prevalence studies such as CHAP and ADAMS are designed so that 3.2 Estimates of the number of people with
everyone in the study undergoes evaluation for dementia. But outside Alzheimer’s dementia by state
of research settings, a substantial portion of those who would meet
the diagnostic criteria for Alzheimer’s and other dementias are not Table 4 lists the estimated number of people age 65 and older with
diagnosed with dementia by a physician.41–44 Furthermore, only about Alzheimer’s dementia by state for 2020 (the most recent year for which
half of Medicare beneficiaries who have a diagnosis of Alzheimer’s these numbers are available), the projected number for 2025, and the
or another dementia in their Medicare billing records report being projected percentage change in the number of people with Alzheimer’s
told of the diagnosis.45–48,227 Because Alzheimer’s dementia is often between 2020 and 2025.A3,239
 341

TA B L E 4 Projections of Total Numbers of Americans Age 65 and TA B L E 4 (Continued)

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 2020 2025 2020-2025
State 2020 2025 2020-2025 Tennessee 120 140 16.7
Alabama 96 110 14.6 Texas 400 490 22.5
Alaska 8.5 11 29.4 Utah 34 42 23.5
Arizona 150 200 33.3 Vermont 13 17 30.8
Arkansas 58 67 15.5 Virginia 150 190 26.7
California 690 840 21.7 Washington 120 140 16.7
Colorado 76 92 21.1 West Virginia 39 44 12.8
Connecticut 80 91 13.8 Wisconsin 120 130 8.3
Delaware 19 23 21.1 Wyoming 10 13 30.0
District of Columbia 8.9 9 1.1
Created from data provided to the Alzheimer’s Association by Weuve
Florida 580 720 24.1 et al.A3,239
Georgia 150 190 26.7
Hawaii 29 35 20.7
As shown in Figure 3, between 2020 and 2025 every state across the
Idaho 27 33 22.2
country is expected to experience an increase of at least 6.7% in the
Illinois 230 260 13.0 number of people with Alzheimer’s. These projected increases in the
Indiana 110 130 18.2 number of people with Alzheimer’s are based on projected increases
Iowa 66 73 10.6 in the population age 65 and older in these states. Because risk factors
Kansas 55 62 12.7 for dementia such as midlife obesity and diabetes can vary dramatically
Kentucky 75 86 14.7 by region and state, the regional patterns of future burden may be dif-
ferent than reported here. Based on these projections, the West and
Louisiana 92 110 19.6
Southeast are expected to experience the largest percentage increases
Maine 29 35 20.7
in people with Alzheimer’s dementia between 2020 and 2025. These
Maryland 110 130 18.2
increases will have a marked impact on states’ health care systems, as
Massachusetts 130 150 15.4
well as the Medicaid program, which covers the costs of long-term care
Michigan 190 220 15.8 and support for many older residents with dementia, including more
Minnesota 99 120 21.2 than a quarter of Medicare beneficiaries with Alzheimer’s or other
Mississippi 57 65 14.0 dementias.240
Missouri 120 130 8.3
Montana 22 27 22.7
Nebraska 35 40 14.3
3.3 Incidence of Alzheimer’s dementia
Nevada 49 64 30.6
While prevalence refers to existing cases of a disease in a population
New Hampshire 26 32 23.1
at a given time, incidence refers to new cases of a disease that develop
New Jersey 190 210 10.5 in a given period of time in a defined population — in this case, the
New Mexico 43 53 23.3 U.S. population age 65 or older. Incidence provides a measure of risk
New York 410 460 12.2 for developing a disease. According to estimates using data from the
North Carolina 180 210 16.7 CHAP study and the U.S. Census, approximately 910,000 people age 65
North Dakota 15 16 6.7 or older developed Alzheimer’s dementia in the United States in 2011,

Ohio 220 250 13.6

a number that would be expected to be even higher in 2021 if CHAP
estimates were available for that year.241 A study using data from the
Oklahoma 67 76 13.4
Adult Changes in Thought Study, a cohort of members of Group Health
Oregon 69 84 21.7
Cooperative of Puget Sound (now Kaiser Permanente Northwest), a
Pennsylvania 280 320 14.3
health care delivery system in the Seattle, Washington, area, reported
Rhode Island 24 27 12.5 similar incidence rates to the CHAP study.242 The number of new cases
South Carolina 95 120 26.3 of Alzheimer’s increases dramatically with age: according to estimates
South Dakota 18 20 11.1 from CHAP, in 2011 the average annual incidence in people age 65
(Continues) to 74 was 0.4% (meaning four of every 1,000 people age 65 to 74
342

F I G U R E 3 Projected increases between 2020 and 2025 in Alzheimer’s dementia prevalence by state. Change from 2020 to 2025 for
Washington, D.C.: 1.1%. Created from data provided to the Alzheimer’s Association by Weuve et al.A3,239

developed Alzheimer’s dementia in 2011); in people age 75 to 84, the

annual incidence was 3.2% (32 of every 1,000 people); and for age 85
and older (the “oldest-old”), the incidence was 7.6% (76 of every 1,000
people).241 Because of the increasing number of people age 65 and
older in the United States, particularly the oldest-old, the annual num-
ber of new cases of Alzheimer’s and other dementias is projected to
double by 2050.243

3.4 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.A4,244 As shown in Figure 4, the study found that the estimated life-
time risk for Alzheimer’s dementia at age 45 was approximately 1 in 5
(20%) for women and 1 in 10 (10%) for men. The risks for both sexes F I G U R E 4 Estimated lifetime risk for Alzheimer’s dementia, by
sex, at ages 45 and 65. Created from data from Chene et al.244
were slightly higher at age 65.244
 343

3.5 Differences between women and men in the included in the study were the ones with a healthier cardiovascular risk
prevalence and risk of Alzheimer’s and other profile (men have a higher rate of death from cardiovascular disease in
dementias middle age than women) and thus a lower risk for dementia.245 More
research is needed to support this interpretation.
More women than men have Alzheimer’s or other dementias. Almost Research into biological sex differences has examined whether
two-thirds of Americans with Alzheimer’s are women.216 Of the genetic risk operates differently in women and men or whether
6.2 million people age 65 and older with Alzheimer’s in the United there are sex differences in the development of or susceptibil-
States, 3.8 million are women and 2.4 million are men.216 This repre- ity to Alzheimer’s pathology.261 A number of studies have shown
sents 12% of women and 9% of men age 65 and older in the United that the APOE-e4 genotype, the best known genetic risk factor
States.213 for Alzheimer’s dementia, may have a stronger association with
The prevailing reason that there are more women living with Alzheimer’s dementia262,263 and neurodegeneration264 in women than
Alzheimer’s or other dementias than men is most likely the fact that in men. However, a recent meta-analysis found no difference between
women live longer than men on average, and older age is the great- men and women in the association between APOE genotype and
est risk factor for Alzheimer’s.244–246 However, when it comes to dif- Alzheimer’s dementia overall, though there was an elevated risk for
ferences in the actual risk of developing Alzheimer’s or other demen- women with the APOE-e4 genotype at certain age ranges.265 It is
tias for men and women of the same age (i.e., incidence), findings unknown why the APOE gene could convey different risk for women,
have been mixed. Most studies of incidence in the United States have but some evidence suggests that it may be due to an interaction
found no significant difference between men and women in the pro- between the APOE genotype and the sex hormone estrogen.266,267
portion who develop Alzheimer’s or other dementias at any given Finally, there is some evidence that women show more rapid cog-
age.75,242,246–248 Some European studies have reported a higher inci- nitive decline and neurodegeneration than men despite having simi-
dence among women at older ages,249,250 and one study from the lar levels of beta-amyloid and tau, meaning the hallmark proteins of
United Kingdom reported higher incidence for men.251 Differences in Alzheimer’s disease may have more negative effects for women than
the risk of dementia between men and women may therefore depend men.268–270
on age and/or geographic region.252,253
Although there do not appear to be large or consistent differences in
the rate at which men and women develop Alzheimer’s or other demen- 3.6 Racial and ethnic differences in the
tias, there may be differences in the reasons they develop dementia. prevalence of Alzheimer’s and other dementias
These differences may be based in biology such as chromosomal or
hormonal differences (i.e., sex differences) or differences in environ- Although there are more Whites living with Alzheimer’s and other
mental, social and cultural influences on men and women (i.e., gen- dementias than any other racial or ethnic group in the United States
der differences), or the combination of the two.252,254 There are many (because Whites are the largest racial/ethnic group in the coun-
instances of gender difference in the distribution of or even the effect try), older Black and Hispanic Americans are disproportionately more
of known risk factors for dementia, such as education, occupation, likely than older White Americans to have Alzheimer’s or other
and health behaviors. For example, lower educational attainment in dementias.271–277 Data from the CHAP study indicates 18.6% of Blacks
women than in men born in the first half of the 20th century could and 14% of Hispanics age 65 and older have Alzheimer’s dementia com-
account for elevated risk in women, as limited formal education is a risk pared with 10% of White older adults.216 Most other prevalence stud-
factor for dementia.255 This explanation requires more research, but ies also indicate that older Blacks are about twice as likely to have
there is evidence that increases in educational attainment over time Alzheimer’s or other dementias as older Whites.241,278,279 Some stud-
in the United States — which have been more substantial for women ies indicate older Hispanics are about one and one-half times as likely
than men — have led to decreased risk for dementia.256 Interestingly, to have Alzheimer’s or other dementias as older Whites.279–281 How-
European studies have found that the relationship of lower educa- ever, Hispanics comprise very diverse groups with different cultural
tion with dementia outcomes may actually be stronger in women than histories, genetic ancestries and health profiles, and there is evidence
men.257,258 that prevalence may differ from one specific Hispanic ethnic group to
Other societal gender differences may also be at play, such as dif- another (for example, Mexican Americans compared with Caribbean
ferences in occupational attainment between men and women, with a Americans).282,283
recent study showing that women who participated in the paid work- The higher prevalence of Alzheimer’s dementia in underrepre-
force earlier in life had better cognitive outcomes after age 60.259,260 sented racial and ethnic groups compared with Whites appears to
Other studies have provided evidence that any observed difference in be due to a higher risk of developing dementia in these groups com-
risk for dementia between men and women may be an artifact of who pared with whites of the same age.284 This higher risk, or incidence,
is more or less likely to die of other health factors before developing of Alzheimer’s and other dementias appears to stem from variations
dementia. A study using Framingham Heart Study data suggested that in medical conditions, health-related behaviors and socioeconomic risk
men in the study appear to have a lower risk for dementia due to “sur- factors across racial groups.277 Despite some evidence that the influ-
vival bias,” in which the men who survived beyond age 65 and were ence of genetic risk factors on Alzheimer’s and other dementias may
344

differ by race,85,87,285 genetic factors do not account for the large dif- reported as Latino or Hispanic) and Whites, and lowest for Asian
ferences in prevalence or incidence among racial groups.284,286 Americans.298 A follow-up study with the same cohort showed het-
Instead, the difference in risk for Alzheimer’s and other dementias erogeneity within Asian American subgroups, but all subgroups stud-
is explained by disparities in health conditions, socioeconomics, and ied had lower dementia incidence than Whites.299 A recent system-
life experiences for older Black and Hispanic populations compared atic review of the literature found that Japanese Americans were the
with older White populations. Many studies suggest that racial and only Asian American subgroup with reliable prevalence data, and that
ethnic differences in dementia risk do not persist in rigorous analyses they had the lowest prevalence of dementia compared with all other
that account for health and socioeconomic factors.140,217,284 Chronic ethnic groups.283 More studies, especially those involving population-
health conditions that are associated with higher dementia risk, such based cohorts, are necessary to draw conclusions about the prevalence
as cardiovascular disease and diabetes, disproportionately affect Black of Alzheimer’s and other dementias in different racial groups and sub-
and Hispanic populations.287,288 Social and environmental disparities groups.
including lower levels and quality of education, higher rates of poverty,
and greater exposure to adversity and discrimination increase risk for
these chronic conditions and risk for dementia in Black and Hispanic 3.7 Trends in the prevalence and incidence of
populations.85,287–289 These health and socioeconomic disparities are Alzheimer’s dementia over time
rooted in the history of discrimination against Black and other peo-
ple of color in the United States, not only during interpersonal inter- A growing number of studies indicate that the prevalence219,256,300–307
actions, but also as enshrined in the rules, practices and policies of U.S. and incidence251,303,307–315 of Alzheimer’s and other dementias in
banks, laws, medical systems and other institutions — that is, structural the United States and other higher income Western countries may
racism.290,291 have declined in the past 25 years,251,256,302–314 though results are
Structural racism influences environmental factors such as where mixed.64,241,316,317 One recent systematic review found that inci-
people can live, the quality of schools in their communities, and expo- dence of dementia has decreased over the last four decades while
sure to harmful toxicants and pollutants. It also influences sociocultural incidence of Alzheimer’s dementia, specifically, has held steady, but
factors such as access to quality health care, employment prospects, more research on this distinction is needed, especially in non-Western
occupational safety, the ability to pass wealth to subsequent gen- countries.318 Declines in dementia risk have been attributed to
erations, treatment by the legal system, and exposure to violence. increasing levels of education and improved control of cardiovascu-
Structural racism impacts many aspects of life that may directly or lar risk factors.256,302,309,312,319,320 Such findings are promising and
indirectly alter the ability to adhere to healthy behaviors or access suggest that identifying and reducing risk factors for dementia may
resources that influence dementia risk. For example, some studies indi- be effective. Although these findings indicate that a person’s risk of
cate that early life experiences with residential and school segregation dementia at any given age may be decreasing slightly, the total num-
can have detrimental effects on the cognitive health of Black Amer- ber of people with Alzheimer’s or other dementias in the United States
icans in later life.292,293 This points to a need for health disparities and other high-income Western countries is expected to continue to
research that employs lifecourse perspectives to account for the many increase dramatically because of the increase in the number of people
environmental and sociocultural factors that may put disproportion- at the oldest ages.
ately affected populations at increased risk for Alzheimer’s and other It is unclear whether these encouraging trends will continue
dementias.288,289 into the future given worldwide trends showing increases in dia-
There is evidence that missed diagnoses of Alzheimer’s and other betes and obesity — potential risk factors for Alzheimer’s demen-
dementias are more common among older Blacks and Hispanics than tia — which may lead to a rebound in dementia risk in coming
among older Whites.294–296 Based on data for Medicare beneficiaries years,107,301,303,321–323 or if these positive trends pertain to all racial
age 65 and older, it has been estimated that Alzheimer’s or another and ethnic groups.241,273,300,319,320,324 Thus, while recent findings are
dementia has been diagnosed in 10.3% of Whites, 12.2% of Hispan- promising, the social and economic burden of Alzheimer’s and other
ics and 13.8% of Blacks.297 Although rates of diagnosis were higher dementias will continue to grow. Moreover, 68% of the projected
among Blacks and Hispanics than among Whites, according to preva- increase in the global prevalence and burden of dementia by 2050 will
lence studies that detect all people who have dementia irrespective of take place in low- and middle-income countries, where there is cur-
their use of health care systems, the rates should be even higher for rently no evidence that the risk of Alzheimer’s and other dementias has
Blacks and Hispanics. been declining.325
Data from population-based cohort studies regarding the national
prevalence of Alzheimer’s and other dementias in racial and ethnic
groups other than Whites, Blacks and Hispanics are relatively sparse. 3.7.1 Looking to the future: Aging of the
However, a study examining electronic medical records of members baby-boom generation
of a large health plan in California indicated that dementia incidence
— determined by the first presence of a dementia diagnosis in mem- A large segment of the American population — the baby-boom gen-
bers’ medical records — was highest for African Americans, inter- eration — has started reaching age 65 and older, when the risk for
mediate for Latinos (the term used in the study for those who self- Alzheimer’s and other dementias is elevated. By 2030, the segment
 345

F I G U R E 5 Projected number of people age 65 and older (total and by age) in the U.S. population with Alzheimer’s dementia, 2020 to 2060.
Created from data from Rajan et al.A5,216

of the U.S. population age 65 and older will have grown substan- ∙ In 2021, about 2.3 million people who have Alzheimer’s dementia
tially, and the projected 74 million older Americans will make up are age 85 or older, accounting for 36% of all people with Alzheimer’s
over 20% of the total population (up from 17% in 2021).213,326 As dementia.216
the number of older Americans grows rapidly, so too will the num- ∙ By 2060, 6.7 million people age 85 and older are expected to have
bers of new and existing cases of Alzheimer’s dementia, as shown in Alzheimer’s dementia, accounting for about half (48%) of all people
Figure 5.A5,72 65 and older with Alzheimer’s dementia.216

∙ By 2025, the number of people age 65 and older with Alzheimer’s

dementia is projected to reach 7.2 million — a 16% increase from the 4 MORTALITY AND MORBIDITY
6.2 million age 65 and older affected in 2021.216
∙ By 2060, the number of people age 65 and older with Alzheimer’s Alzheimer’s disease is officially listed as the sixth-leading cause of
dementia is projected to reach 13.8 million, barring the development death in the United States and is the fifth-leading cause of death for
of medical breakthroughs to prevent, slow or cure Alzheimer’s dis- those age 65 and older.327 However, it may cause even more deaths
ease.A5,216 than official sources recognize. Alzheimer’s is also a leading cause of
disability and poor health (morbidity) in older adults. Before a person
with Alzheimer’s dies, he or she lives through years of morbidity as the
3.7.2 Growth of the oldest-old population disease progresses.

The number of Americans surviving into their 80s, 90s and beyond
is expected to grow dramatically due to the aging of the large baby- 4.1 The effect of the COVID-19 pandemic on
boom cohort, as well as longer life expectancies due to medical deaths from Alzheimer’s disease
advances and changes to social and environmental conditions.326 This
will lead to an increase in the number and percentage of Ameri- The data presented in the Mortality and Morbidity section comes
cans who will be 85 and older, the oldest-old. Between now and from the most recent data sources available, all of which preceded the
2050, the oldest-old are expected to comprise an increasing propor- COVID-19 pandemic that emerged in the United States in 2020. Ini-
tion of the U.S. population age 65 and older — from 17% in 2021 to tial reports from the Centers for Disease Control and Prevention (CDC)
22% in 2050.326 This will result in an additional 12 million oldest-old show that excess mortality (the difference between the observed num-
people — individuals at the highest risk for developing Alzheimer’s ber of deaths and the expected number of deaths during a given time
dementia.326 period) due to all causes was very high in 2020 compared with previous
346

F I G U R E 6 Deaths due to Alzheimer’s and other dementias in the United States in 2020 compared with previous years. Data for 2020 are
current as of February 3, 2021. Created from data from the National Center for Health Statistics.328

years, especially among older adults.328 Many of these excess deaths In the United States, Alzheimer’s disease is counted as a cause of
were in vulnerable older adults with Alzheimer’s disease and other death that can be ranked against other leading causes of death such as
dementias (Figure 6). Preliminary reports from the CDC indicate that cancer and heart disease, but deaths due to other types of dementia are
there were at least 42,000 more deaths from Alzheimer’s disease and not ranked in this manner. The number of deaths from dementia of any
other dementias in 2020 compared with the average of the five years type is much higher than the number of reported Alzheimer’s deaths.
before 2020. This is approximately 16% more than expected. Addi- In 2019, some form of dementia was the officially recorded underlying
tionally, the CDC reported the number of COVID-19 deaths for which cause of death for 271,872 individuals (this includes the 121,499 from
death certificates listed additional conditions as a cause of death: in 4% Alzheimer’s disease).330,332 Therefore, the number of deaths from all
of death certificates listing COVID-19 as the primary cause of death, causes of dementia, even as listed on death certificates, is more than
Alzheimer’s disease was also listed as one of multiple causes of death, twice as high as the number of reported Alzheimer’s deaths alone.
and in 11% of death certificates listing COVID-19 as the primary cause Severe dementia frequently causes complications such as immobil-
of death, vascular or unspecified dementia was also listed. Among peo- ity, swallowing disorders and malnutrition that significantly increase
ple over age 85 who died of COVID-19, Alzheimer’s disease was listed the risk of serious acute conditions that can cause death. One such
as one of multiple causes of death for 8% and vascular or unspecified condition is pneumonia (infection of the lungs), which is the most com-
dementia was listed for 20%.329 Thus, we expect the dramatic effect of monly identified immediate cause of death among older adults with
this pandemic on patterns of death from Alzheimer’s to be apparent in Alzheimer’s or other dementias.333–336 One autopsy study found that
coming years’ Facts and Figures reports that incorporate data from 2020 respiratory system diseases were the immediate cause of death in
and 2021. more than half of people with Alzheimer’s dementia, followed by cir-
culatory system disease in about a quarter.334 Death certificates for
individuals with Alzheimer’s often list acute conditions such as pneu-
4.2 Deaths from Alzheimer’s disease monia as the primary cause of death rather than Alzheimer’s.335–336
As a result, people with Alzheimer’s dementia who die due to these
It is difficult to determine how many deaths are caused by acute conditions may not be counted among the number of people
Alzheimer’s disease each year because of the way causes of who die from Alzheimer’s disease, even though Alzheimer’s disease
death are recorded. According to data from the CDC, 121,499 may well have caused the acute condition listed on the death certifi-
people died from Alzheimer’s disease in 2019, the latest year for cate. This difficulty in using death certificates to determine the number
which data are available.330 The CDC considers a person to have of deaths from Alzheimer’s and other dementias has been referred to
died from Alzheimer’s if the death certificate lists Alzheimer’s as a “blurred distinction between death with dementia and death from
as the underlying cause of death, defined as “the disease or dementia.”337
injury which initiated the chain of events leading directly to Another way to determine the number of deaths from Alzheimer’s
death.”331 dementia is through calculations that compare the estimated risk of
 347

F I G U R E 7 Percentage changes in selected causes of death (all ages) between 2000 and 2019. Created from data from the National Center for
Health Statistics.330,343

death in those who have Alzheimer’s dementia with the estimated people who have Alzheimer’s disease when they die. Although some
risk of death in those who do not have Alzheimer’s dementia. A study older adults who have Alzheimer’s disease at the time of death die from
using data from the Rush Memory and Aging Project and the Religious causes that are unrelated to Alzheimer’s, many die from Alzheimer’s
Orders Study estimated that 500,000 deaths among people age 75 and disease itself or from conditions in which Alzheimer’s was a contribut-
older in the United States in 2010 could be attributed to Alzheimer’s ing cause, such as pneumonia.
dementia (estimates for people age 65 to 74 were not available), mean- To add further complexity, the vast majority of death certificates list-
ing that those deaths would not be expected to occur in that year if ing Alzheimer’s disease or dementia as an underlying cause of death
those individuals did not have Alzheimer’s dementia.338 A more recent are not verified by autopsy, and research has shown that about 15% to
study using data from the nationally representative Health and Retire- 30% of those diagnosed with Alzheimer’s dementia during life do not
ment Study estimated that about 14% of deaths in Americans age in fact have dementia due to Alzheimer’s disease, but have dementia
70 and older from 2000-2009 were attributable to dementia, while due to another cause (see Table 1).11,73,220–222 Therefore, an underly-
only 5% of death certificates listed dementia as the underlying cause ing cause of death listed as Alzheimer’s disease may not be accurate.
of death for this age group in that time period, indicating underre- In this section, “deaths from Alzheimer’s disease” refers to what is offi-
porting on death certificates.339 According to 2014 Medicare claims cially reported on death certificates, with the understanding that the
data, about one-third of all Medicare beneficiaries who die in a given person filling out the report believed dementia due to Alzheimer’s dis-
year have been diagnosed with Alzheimer’s or another dementia.340 ease was the underlying cause of death, usually without pathologic con-
Based on data from the Chicago Health and Aging Project (CHAP) firmation.
study, in 2020 an estimated 700,000 people age 65 and older in the Irrespective of the cause of death, among people age 70,
United States had Alzheimer’s at death.341 The true number of deaths 61% of those with Alzheimer’s dementia are expected to die
caused by Alzheimer’s is somewhere between the number of deaths before age 80 compared with 30% of people without Alzheimer’s
from Alzheimer’s recorded on death certificates and the number of dementia.342
348

TA B L E 5 Number of Deaths and Annual Mortality Rate (per 100,000) Due to Alzheimer’s Disease by State, 2019

Number of Mortality Number of Mortality

State Deaths Rate State Deaths Rate
Alabama 2,659 54.2 Montana 326 30.5
Alaska 128 17.5 Nebraska 768 39.7
Arizona 3,047 41.9 Nevada 678 22
Arkansas 1507 49.9 New Hampshire 511 37.6
California 16,859 42.7 New Jersey 2,629 29.6
Colorado 1,909 33.1 New Mexico 568 27.1
Connecticut 967 27.1 New York 3,753 19.3
Delaware 339 34.8 North Carolina 4,508 43
District of Columbia 81 11.5 North Dakota 403 52.9
Florida 6,539 30.4 Ohio 5,234 44.8
Georgia 4,221 39.8 Oklahoma 1,775 44.9
Hawaii 471 33.3 Oregon 1,992 47.2
Idaho 650 36.4 Pennsylvania 4,150 32.4
Illinois 3,954 31.2 Rhode Island 456 43
Indiana 2,561 38 South Carolina 2,323 45.1
Iowa 1,344 42.6 South Dakota 495 56
Kansas 839 28.8 Tennessee 3,252 47.6
Kentucky 1,684 37.7 Texas 10,101 34.8
Louisiana 2,165 46.6 Utah 980 30.6
Maine 544 40.5 Vermont 315 50.5
Maryland 1,012 16.7 Virginia 2,631 30.8
Massachusetts 1,663 24.1 Washington 3,585 47.1
Michigan 4,467 44.7 West Virginia 832 46.4
Minnesota 2,552 45.3 Wisconsin 2,390 41
Mississippi 1,662 55.8 Wyoming 238 41.1
Missouri 2,782 45.3 U.S. Total 121,499 37

Created from data from the National Center for Health Statistics.A6,330

4.3 Public health impact of deaths from 4.4 State-by-state deaths from Alzheimer’s
Alzheimer’s disease
Table 5 provides information on the number of deaths due to
Although deaths from other major causes have decreased signifi- Alzheimer’s by state in 2019, the most recent year for which state-
cantly or remained approximately the same, official records indi- by-state data are available. This information was obtained from death
cate that deaths from Alzheimer’s disease have increased significantly. certificates and reflects the condition identified by the physician as
Between 2000 and 2019, the number of deaths from Alzheimer’s dis- the underlying cause of death. The table also provides annual mortal-
ease as recorded on death certificates more than doubled, increas- ity rates by state to compare the risk of death due to Alzheimer’s dis-
ing 145.2%, while deaths from the number one cause of death (heart ease across states with varying population sizes. For the United States
disease) decreased 7.3% (Figure 7).330,343 The increase in the num- as a whole, in 2019, the mortality rate for Alzheimer’s disease was
ber of death certificates listing Alzheimer’s as the underlying cause 37 deaths per 100,000 people.A6,330
of death probably reflects both a real increase in the actual number
of deaths from Alzheimer’s due in large part to Alzheimer’s becom-
ing a more common cause of death as the population ages, as well 4.5 Alzheimer’s death rates
as increased reporting of Alzheimer’s deaths on death certificates
over time by physicians, coroners and others who assign causes of As shown in Figure 8, the rate of deaths due to Alzheimer’s has risen
death.344 substantially since 2000.330 Table 6 shows that the rate of death
 349

FIGURE 8 U.S. annual Alzheimer’s death rate (per 100,000) by year. Created from data from the National Center for Health Statistics.330

from Alzheimer’s increases dramatically with age, especially after age with 20% of people with cancer and 28% of people dying from all other
65.A6,330 The increase in the Alzheimer’s death rate over time has dis- conditions.353
proportionately affected the oldest-old.343 Between 2000 and 2019,
the death rate from Alzheimer’s increased 33% for people age 65 to
74, but increased 51% for people age 75 to 84 and 78% for people 4.7 Burden of Alzheimer’s disease
age 85 and older.330 A report by the CDC determined that even after
adjusting for differences in age distributions over time, the annual The long duration of illness before death contributes significantly to
Alzheimer’s death rate in the United States increased substantially the public health impact of Alzheimer’s disease because much of that
between 1999 and 2014.344 Therefore, the growing proportion of time is spent in a state of disability and dependence. Scientists have
older adults in the country is not the only explanation for the increase in developed methods to measure and compare the burden of different
Alzheimer’s death rates. Other possible reasons include fewer deaths diseases on a population in a way that takes into account not only the
from other common causes of death in old age such as heart dis- number of people with the condition, but also the number of years of
ease and stroke; increased clinical recognition of and formal diagno- life lost due to that disease and the number of healthy years of life
sis of Alzheimer’s dementia; and increased reporting of Alzheimer’s lost by virtue of being in a state of disability. The primary measure of
as a cause of death by physicians and others who fill out death disease burden is called disability-adjusted life years (DALYs), which
certificates.344 is the sum of the number of years of life lost (YLLs) due to premature
mortality and the number of years lived with disability (YLDs), totaled
across all those with the disease or injury. These measures indicate
4.6 Duration of illness from diagnosis to death that Alzheimer’s is a very burdensome disease, not only to the indi-
viduals with the disease, but also to their families and informal care-
Studies indicate that people age 65 and older survive an average of four givers, and that the burden of Alzheimer’s has increased more dramati-
to eight years after a diagnosis of Alzheimer’s dementia, yet some live cally in the United States than the burden of other diseases in recent
as long as 20 years with Alzheimer’s dementia.242,345–352 This reflects years. According to the most recent Global Burden of Disease clas-
the slow, insidious and uncertain progression of Alzheimer’s. A person sification system, Alzheimer’s disease rose from the 12th most bur-
who lives from age 70 to age 80 with Alzheimer’s dementia will spend densome disease or injury in the United States in 1990 to the sixth in
an average of 40% of this time in the severe stage.342 Much of this time 2016 in terms of DALYs. In 2016, Alzheimer’s disease was the fourth
will be spent in a nursing home. At age 80, approximately 75% of peo- highest disease or injury in terms of YLLs and the 19th in terms of
ple with Alzheimer’s dementia live in a nursing home compared with YLDs.354
only 4% of the general population age 80.342 In all, an estimated two- Taken together, these statistics indicate that not only is Alzheimer’s
thirds of those who die of dementia do so in nursing homes, compared disease responsible for the deaths of more and more Americans, but
350

TA B L E 6 U.S. Annual Alzheimer’s Death Rates (per 100,000) by Age and Year

Age 2000 2002 2004 2006 2008 2010 2012 2014 2016 2018 2019
45-54 0.2 0.1 0.2 0.2 0.2 0.3 0.2 0.2 0.2 0.3 0.3
55-64 2.0 1.9 1.8 2.1 2.2 2.1 2.2 2.1 2.7 2.9 3.0
65-74 18.7 19.6 19.5 19.9 21.1 19.8 17.9 19.6 23.6 24.7 24.9
75-84 139.6 157.7 168.5 175.0 192.5 184.5 175.4 185.6 214.1 213.9 210.2
85+ 667.7 790.9 875.3 923.4 1,002.2 987.1 936.1 1,006.8 1,216.9 1,225.3 1,191.3
330
Created from data from the National Center for Health Statistics.

also that the disease is contributing to more and more cases of poor TA B L E 7 Dementia Caregiving Tasks
health and disability in the United States.
Helping with instrumental activities of daily living (lADLs), such as
household chores, shopping, preparing meals, providing
transportation, arranging for doctor’s appointments, managing
5 CAREGIVING finances and legal affairs, and answering the telephone.
Helping the person take medications correctly, either via reminders or
direct administration of medications.
Caregiving refers to attending to another person’s health needs and
well-being. Caregiving often includes assistance with one or more Helping the person adhere to treatment recommendations for
dementia or other medical conditions.
activities of daily living (ADLs), including bathing and dressing, as
Assisting with personal activities of daily living (ADLs), such as
well as multiple instrumental activities of daily living (IADLs), such as
bathing, dressing, grooming and feeding and helping the person
paying bills, shopping and using transportation.355,356 Caregivers also
walk, transfer from bed to chair, use the toilet and manage
provide emotional support to people with Alzheimer’s as well as com- incontinence.
municating and coordinating care with other family members and Managing behavioral symptoms of the disease such as aggressive
health care providers, ensuring safety at home and elsewhere, and behavior, wandering, depressive mood, agitation, anxiety, repetitive
managing health conditions (see Table 7). In addition to providing activity and nighttime disturbances.
descriptive information about caregivers of people with Alzheimer’s Finding and using support services such as support groups and adult
or other dementias, this section compares caregivers of people with day service programs.

dementia to either caregivers of people with other medical conditions Making arrangements for paid in-home, nursing home or assisted
living care.
or, if that comparison is not available, to people who are not caregivers
(referred to here as non-caregivers). Hiring and supervising others who provide care.
Assuming additional responsibilities that are not necessarily specific
tasks, such as:
5.1 Unpaid caregivers ∙ Providing overall management of getting through the day.
∙ Addressing family issues related to caring for a relative with
Eighty-three percent of the help provided to older adults in the Alzheimer’s disease, including communication with other family
United States comes from family members, friends or other unpaid members about care plans, decision-making and arrangements for
respite for the main caregiver.
caregivers.359 Nearly half of all caregivers (48%) who provide help
∙ Managing other health conditions (i.e., comorbidities), such as
to older adults do so for someone with Alzheimer’s or another arthritis, diabetes or cancer.
dementia.360 More than 11 million Americans provide unpaid care for ∙ Providing emotional support and a sense of security.
people with Alzheimer’s or other dementias.A7
In 2020, caregivers of people with Alzheimer’s or other dementias
provided an estimated 15.3 billion hours of informal (that is, unpaid)
assistance, a contribution to the nation valued at $256.7 billion. This is Three of the main reasons caregivers provide assistance to a per-
approximately 49% of the net value of Walmart’s total revenue in fiscal son with Alzheimer’s or another dementia are: (1) the desire to keep
year 2020 ($524 billion)361 and 12 times the total revenue of McDon- a family member or friend at home (65%), (2) proximity to the per-
ald’s in 2019 ($21.1 billion).362 The total lifetime cost of care for some- son with dementia (48%) and (3) the caregiver’s perceived obligation
one with dementia was estimated at $373,527 in 2020 dollars. Sev- to the person with dementia (38%).A8 Caregivers often indicate love
enty percent of the lifetime cost of care is borne by family caregivers and a sense of duty and obligation when describing what motivates
in the forms of unpaid caregiving and out-of-pocket expenses for items them to assume care responsibilities for a relative or friend living with
ranging from medications to food for the person with dementia.363,364 dementia.366
Current estimates of the lifetime costs of care may underestimate the Individuals with dementia living in the community are more likely
impact of a relative’s dementia on family caregivers’ health and work- than older adults without dementia to rely on multiple unpaid care-
place productivity.365 givers (often family members); 30% of older adults with dementia rely
 351

on three or more unpaid caregivers, whereas 23% of older adults with- compared with a dementia caregiver a decade ago. In other words, the
out dementia rely on three or more unpaid caregivers.367 Only a small amount of care received by a person with dementia is about the same,
percentage of older adults with dementia do not receive help from fam- but it is provided by fewer people.
ily members or other informal care providers (8%). Of these individu- Finally, while rebuilding the caregiving model, external experts
als, nearly half live alone, perhaps making it more difficult to ask for advised that the Association was undervaluing the care provided by
and receive informal care.367 Of caregivers of spouses with dementia unpaid caregivers by being too conservative in the method used to
who are at the end of life, close to half provide care without the help of assess the economic value of care. The experts noted that most other
other family or friends.368 Living alone with dementia may be a partic- assessments of caregiver value used a less conservative methodol-
ular challenge for certain subgroups, such as lesbian, gay, bisexual and ogy. In light of this advice, the new model incorporates an assessment
transgender (LGBT) individuals, who may experience greater isolation methodA10 that is more consistent with, but still more conservative
for reasons ranging from social stigma to a diminished social network than, the expert recommendations. This has resulted in an increase in
of available family or friend caregivers.369 the estimate of the economic value of unpaid care, even while the num-
ber of caregivers has declined.

5.1.1 Calculating the number of caregivers

5.1.2 Who are the caregivers?
The estimated number of caregivers for people with Alzheimer’s and
other dementias in 2020 (11.2 million) is significantly lower than pre- Several sources have examined the demographic background of family
vious estimates of the number of caregivers. As noted in last year’s caregivers of people with Alzheimer’s or other dementias in the United
Alzheimer’s Disease Facts and Figures report, preliminary analysis of States. They have found the following:A8,370–374
recently released data on caregivers indicated that the number of fam-
ily caregivers for all older Americans had declined compared with a ∙ Approximately two-thirds of dementia caregivers are wo-
decade earlier. Because the previous version of the model used to esti- men.A8,370,371
mate the number of dementia caregivers had incorporated data from ∙ About 30% of caregivers are age 65 or older.A8
2009 (the most recent date for which some data were available), the ∙ Over 60% of caregivers are married, living with a partner or in a long-
model had not reflected these broader trends. term relationship.A8,371
With the release of newer data over the last few years — including, ∙ Over half of caregivers are providing assistance to a parent or in-law
most notably, more detailed state-specific data on dementia caregivers with dementia.374 Approximately 10% of caregivers provide help to
that allows for more precise estimates for each state (as opposed to a spouse with Alzheimer’s disease or another dementia.374,375
applying national data to each state) — the Alzheimer’s Association ∙ Two-thirds of caregivers are White,A8,371,374 10% are Black, 8% are
worked with caregiving and modeling experts to rebuild the caregiving Hispanic and 5% are Asian American.A8 The remaining 10% repre-
model with entirely new methodology, inputs and assumptions. The sent a variety of other racial/ethnic groups.
result is that the number of unpaid dementia caregivers declined ∙ Approximately 40% of dementia caregivers have a college degree or
over the decade from 14.9 million in 2010, according to an earlier more education.A8,371,374
Alzheimer’s Disease Facts and Figures report, to 11.2 million in 2020. ∙ Forty-one percent of caregivers have a household income of
This comparison is consistent with the data showing fewer unpaid $50,000 or less.A8
caregivers in total compared with a decade ago. The previous model, ∙ Among primary caregivers (individuals who indicate having the most
using the best available data at the time, did not reflect this broader responsibility for helping their relatives) of people with dementia,
trend, and in fact showed slight year-over-year increases. Thus, the cur- over half take care of their parents.373,376,377
rent estimate should be compared with a decade ago, not with the num- ∙ Most caregivers (66%) live with the person with dementia in the
ber reported for 2019 in last year’s report. For the future, the new community.367
model has been designed to allow for easier incorporation of newer ∙ Approximately one-quarter of dementia caregivers are “sandwich
data as it is released, including data from individual states, to increase generation” caregivers — meaning that they care not only for an
the likelihood that trends in the prevalence and burden of dementia aging parent, but also for a child.A8,374,375
caregiving will be identified in a more timely fashion. ∙ Twenty-three percent of all caregivers ages 18 to 49 help someone
While the number of unpaid caregivers — both overall and for peo- with dementia, which is an increase of 7% since 2015.378
ple living with dementia — has declined, this does not reflect a signifi-
cant lessening in the amount of care provided. Data for both caregivers
in general and for dementia caregivers as reflected in the new model 5.1.3 Caregiving and women
show that as the number of unpaid caregivers decreased, the amount
of care each remaining caregiver provided increased, placing an even The responsibilities of caring for someone with dementia often
greater burden on those providing care. In fact, a dementia caregiver fall to women. As mentioned earlier, approximately two-thirds of
today is providing, on average, 20.2% more hours of care each week dementia caregivers are women.A8,370,371,376,377 Over one-third of
352

dementia caregivers are daughters.359,367 It is more common for ing may vary depending on racial and ethnic context, perhaps inter-
wives to provide informal care for a husband than vice versa.379 On secting with research. Studies of caregivers often lack sufficient num-
average, female caregivers spend more time caregiving than male bers of diverse participants to confirm these findings or delve deeper
caregivers.367 According to the 2014 Alzheimer’s Association Women into them for important insights. Recent reviews and national sum-
and Alzheimer’s Poll which surveyed both men and women, two-thirds mits have emphasized the need to revise recruitment strategies to cap-
of those providing care for 21 hours or more (67%) were women.380 ture the range of dementia care experiences among Black caregivers,
Similarly, the 2015-2017 Behavioral Risk Factor Surveillance System indigenous caregivers and caregivers of color.387 If representation in
(BRFSS) surveys found that of all dementia caregivers who spend more dementia care research is not improved, our ability to generalize find-
than 40 hours per week providing care, 73% were women.375 Two and a ings or determine whether findings vary by diverse subgroups is not
half times as many women as men reported living with the person with possible. This hinders the progress of all Alzheimer’s disease caregiv-
dementia full time.380 Of those providing care to someone with demen- ing research. In addition, if these individuals continue to lack repre-
tia for more than five years, 63% were women.375 Similarly, care- sentation in Alzheimer’s research, they will not receive the benefits
givers who are women may experience slightly higher levels of burden, of prevention, treatment or care innovations.387 Establishing stronger
impaired mood, depression and impaired health than caregivers who relationships with existing organizations and resources in Black com-
are men, with evidence suggesting that these differences arise because munities, indigenous communities and communities of color offer the
female caregivers tend to spend more time caregiving, assume more potential of research-based partnerships that enhance representation
caregiving tasks, and care for someone with more cognitive, functional in Alzheimer’s disease research.374,375 In addition, a greater under-
and/or behavioral problems.381–383 Of dementia caregivers who indi- standing of how multiple chronic diseases (multimorbidity) intersect
cated a need for individual counseling or respite care, the large major- with dementia among Blacks, indigenous peoples, and people of color
ity were women (individual counseling, 85%, and respite care, 84%).375 is needed.391

5.1.4 Race, ethnicity and dementia caregiving 5.1.5 Caregiving tasks

Only recently have population-based studies examined racial dispari- The care provided to people with Alzheimer’s or other dementias
ties in caregiving for older people. When compared with White care- is wide-ranging and in some instances all-encompassing. Table 7
givers, Black caregivers are more likely to provide more than 40 hours summarizes some of the most common types of dementia care
of care per week (54.3% versus 38.6%) and are also more likely to provided.
care for someone with dementia (31.7% versus 11.9%). Black demen- Though the care provided by family members of people with
tia caregivers were found to be 69% less likely to use respite services Alzheimer’s or other dementias is somewhat similar to the help pro-
when compared with White caregivers.384 Hispanic, Black, and Asian vided by caregivers of people with other conditions, dementia care-
American dementia caregivers indicate greater care demands, less out- givers tend to provide more extensive assistance. Family caregivers of
side help/formal service use, and greater depression when compared people with dementia are more likely to monitor the health of the care
with White caregivers.385–387 Mexican American older adults who live recipient than are caregivers of people without dementia (79% versus
alone experience dual risks of both greater cognitive impairment and 66%).393 Data from the 2011 National Health and Aging Trends Study
receiving low support from others when compared to Mexican Ameri- indicated that caregivers of people with dementia are more likely than
can older adults who live with others.388 Cultural values may also influ- caregivers of people without dementia to provide help with self-care
ence gender disparities in perceptions of support among caregivers and mobility (85% versus 71%) and health or medical care (63% versus
across diverse racial and ethnic contexts.389 52%).360,370 Figure 9 illustrates how family caregivers of people with
Black caregivers are more likely than White caregivers to report dementia are more likely than caregivers of other older people to assist
positive aspects of caregiving.390 A meta-analysis found that Black with ADLs.374
dementia caregivers indicate slightly higher psychological well-being People with dementia tend to have larger networks of family and
than White dementia caregivers. Hispanic dementia caregivers, how- friends involved in their care compared with people without dementia.
ever, reported slightly lower physical well-being than White demen- Family members and friends in dementia care networks tend to pro-
tia caregivers.391 Other research has examined variations in self-rated vide help for a larger number of tasks than do those in non-dementia
health among dementia caregivers of diverse racial and ethnic back- care networks.394
grounds. Support from family and friends is associated with better self- When a person with Alzheimer’s or another dementia moves to an
rated health for Black dementia caregivers, but not for White or His- assisted living residence or a nursing home, the help provided by his
panic caregivers. A more positive perceived relationship between the or her family caregiver usually changes from the comprehensive care
caregiver and person with dementia was associated with better self- summarized in Table 7 to providing emotional support, interacting with
rated health among Black and White caregivers.385 residential care staff and advocating for appropriate care. However,
Dementia caregiving is clearly common, regardless of race or eth- some family caregivers continue to help with bathing, dressing and
nicity. The comparisons above suggest that the experience of caregiv- other ADLs.394,395
 353

F I G U R E 9 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. Created from data from the National Alliance for Caregiving and AARP.374

5.1.6 Duration of caregiving of family care for people with Alzheimer’s disease and other dementias
as the U.S. population continues to age.
In 2014, 86% of dementia caregivers provided assistance for at least Apart from its long duration, caregiving involves immediate
the past year.A8 According to another study, well over half (57%) of demands that are also time-intensive. Caregivers of people with
family caregivers of people with Alzheimer’s or other dementias living dementia report providing 27 hours more care per month on aver-
in the community had provided care for four or more years.367 age (92 hours versus 65 hours) than caregivers of people without
dementia.370 An analysis of national caregiving trends from 1999 to
2015 found that the average hours of care per week increased from
5.1.7 Hours of unpaid care and economic value of 45 in 1999 to 48 in 2015 for dementia caregivers; over the same time
caregiving period, weekly hours of care decreased for non-dementia caregivers
from 34 to 24.398 The amount of time required for caregiving increases
In 2020, the 11.2 million family and other unpaid caregivers of as dementia progresses; one study showed that people with dementia
people with Alzheimer’s or other dementias provided an estimated required 151 hours of caregiving per month at the outset of dementia
15.3 billion hours of unpaid help. This number represents an average and increased to 283 hours per month eight years later.399 Each
of 26.3 hours of care per caregiver per week, or 1,369 hours of care per instance of a decrease in an ADL or IADL in someone with dementia
caregiver per year.A9 With this care valued at the average of the state results in close to five more hours of monthly caregiving compared
minimum wage and the median hourly cost of a home health aide,A10 with a similar functional decrease for someone without dementia.400
the estimated economic value of care provided by family and other
unpaid caregivers of people with dementia across the United States
was more than $256.7 billion in 2020. Table 8 shows the total hours 5.1.8 Health and economic impacts of Alzheimer’s
of unpaid care as well as the value of care provided by family and other caregiving
unpaid caregivers for the United States and each state. Unpaid care-
givers of people with Alzheimer’s or other dementias provided care val- Caring for a person with Alzheimer’s or another dementia poses special
ued at more than $4 billion in each of 21 states. Unpaid caregivers in challenges. For example, people in the moderate-to-severe stages of
each of the four most populous states — California, Florida, New York Alzheimer’s dementia experience losses in judgment, orientation, and
and Texas — provided care valued at more than $10 billion. A longitu- the ability to understand and communicate effectively. Family care-
dinal study of the monetary value of family caregiving for people with givers must often help people with Alzheimer’s manage these issues.
dementia found that the overall value of daily family care increased The personality and behavior of a person with Alzheimer’s are affected
18% with each additional year of providing care, and that the value as well, and these changes are often among the most challenging
of this care further increased as the care recipient’s cognitive abilities for family caregivers.401–403 Individuals with Alzheimer’s also require
declined.397 Additional research is needed to estimate the future value increasing levels of supervision and personal care as the disease
354

TA B L E 8 Number of Caregivers of People with Alzheimer’s or TA B L E 8 (Continued)

Other Dementias, Hours of Unpaid Care and Economic Value of
Unpaid Care by State, 2020* Number of Hours of Value of Care
Caregivers Care (in millions
Number of Hours of Value of Care State (in thousands) (in millions) of dollars)
Caregivers Care (in millions South Carolina 199 298 $4,354
State (in thousands) (in millions) of dollars)
South Dakota 19 18 $339
Alabama 206 225 $2,842
Tennessee 357 483 $6,823
Alaska 12 21 $406
Texas 1,079 1,759 $25,726
Arizona 262 511 $9,711
Utah 104 144 $2,397
Arkansas 93 140 $2,098
Vermont 25 36 $717
California 1,120 884 $18,126
Virginia 349 521 $7,886
Colorado 158 184 $3,675
Washington 295 426 $9,620
Connecticut 142 156 $2,877
West Virginia 85 145 $1,971
Delaware 46 67 $1,141
Wisconsin 196 204 $3,386
District of 15 16 $322
Columbia Wyoming 16 21 $379

Florida 527 685 $10,636 National 11,199 15,338 $256,650

Georgia 334 640 $9,198 *State totals may not add to the U.S. total due to rounding. Created
from data from the 2015–2019 Behavioral Risk Factor Surveillance Sys-
Hawaii 51 81 $1,621
tem survey, U.S. Census Bureau, National Alliance for Caregiving, AARP,
Idaho 40 47 $719 U.S. Department of Labor and Genworth.A7,A9,A10
Illinois 381 480 $8,514
Indiana 215 274 $4,288
progresses. As the person with dementia’s symptoms worsen, care-
Iowa 73 60 $995 givers can experience increased emotional stress and depression; new
Kansas 85 95 $1,396 or exacerbated health problems; and depleted income and finances due
Kentucky 149 265 $3,841 in part to disruptions in employment and paying for health care or other
Louisiana 204 318 $3,854 services for themselves and people living with dementia.404–412

Maine 46 68 $1,378 Caregiver emotional and social well-being

Maryland 238 364 $6,560 The intimacy, shared experiences and memories that are often part of
Massachusetts 281 406 $8,602 the relationship between a caregiver and person living with demen-
Michigan 463 491 $8,509 tia may be threatened due to the memory loss, functional impair-

Minnesota 170 155 $3,326 ment and psychiatric/behavioral disturbances that can accompany the
progression of Alzheimer’s. In a national poll, however, 45% of care-
Mississippi 131 227 $2,925
givers of people with dementia indicated that providing help to some-
Missouri 194 292 $4,741
one with cognitive impairment was very rewarding.377 In a national
Montana 16 24 $425
study, greater satisfaction from dementia caregiving was associated
Nebraska 61 51 $894
with more emotional support from family members and friends.413
Nevada 48 78 $1,334 Although caregivers report positive feelings about caregiving, such as
New Hampshire 57 82 $1,495 family togetherness and the satisfaction of helping others,A8,414–420
New Jersey 347 658 $12,178 they also frequently report higher levels of stress.
New Mexico 85 157 $2,511
Burden and stress
New York 586 774 $14,620
∙ Compared with caregivers of people without dementia, twice as
North Carolina 358 517 $7,302
many caregivers of those with dementia indicate substantial emo-
North Dakota 19 29 $521
tional, financial and physical difficulties.370
Ohio 442 590 $9,633
∙ Fifty-nine percent of family caregivers of people with Alzheimer’s or
Oklahoma 129 244 $3,814 other dementias rated the emotional stress of caregiving as high or
Oregon 155 257 $5,274 very high (Figure 10).A8
Pennsylvania 500 622 $9,726 ∙ Spousal dementia caregivers are more likely than non-spousal
Rhode Island 38 48 $1,026 dementia caregivers to experience increased burden over time. This
(Continues) increased burden also occurs when the person with dementia devel-
ops behavioral changes and decreased functional ability.421
 355

harm and wandering) represents a “tipping point” for family care-

givers, as they are more likely to report clinically meaningful depres-
sion and burden (that is, negative emotional reactions to providing
care).435

Strain

∙ Caregivers of people with Alzheimer’s or other dementias were

twice as likely as caregivers of individuals without dementia (22%
compared with 11%) to report that completing medical/nursing-
related tasks (for example, injections, tube feedings and
catheter/colostomy care) was difficult.393
∙ Dementia caregivers often lack the information or resources neces-
sary to manage complex medication regimens.436–439
F I G U R E 1 0 Percentage of caregivers who report high to very
∙ According to the 2014 Alzheimer’s Association poll of caregivers,
high stress due to caregiving. Created from data from the Alzheimer’s
Association.A8 respondents often believed they had no choice in taking on the role
of caregiver.A8
∙ Many people with dementia have co-occurring chronic conditions, ∙ The poll also found that more than half of women with children
such as hypertension or arthritis. A national study of caregivers of under age 18 felt that caregiving for someone with dementia was
people with dementia living with additional chronic conditions found more challenging than caring for children (53%).A8
that caregivers of people with dementia who had a diagnosis of dia- ∙ Many caregivers of people with Alzheimer’s or other dementias pro-
betes or osteoporosis were 2.6 and 2.3 times more likely, respec- vide help alone. Forty-one percent of dementia caregivers in the
tively, to report emotional difficulties with care compared with care- 2014 Alzheimer’s Association poll reported that no one else pro-
givers of people with dementia who did not have these co-occurring vided unpaid assistance.A8
conditions.422 ∙ A population-based sample of caregivers found that although
dementia caregivers indicated greater strain than non-dementia
Depression and mental health caregivers, no substantial differences in strain between White and
Black dementia caregivers were evident.440
∙ A meta-analysis reported that caregivers of people with dementia
were significantly more likely to experience depression and anxi- Stress of care transitions
ety than non-caregivers.383 Dementia caregivers also indicate more
depressive symptoms than non-dementia caregivers.423 Approxi- ∙ Individuals who assume care responsibilities for someone with
mately 30% to 40% of family caregivers of people with dementia dementia are more likely to report a decline in social network size
report depression, compared with 5% to 17% of non-caregivers of than those helping people without dementia.441
similar ages.424–429 ∙ Admitting a relative to a residential care facility has mixed effects
∙ The prevalence of depression is higher among dementia caregivers on the emotional and psychological well-being of family caregivers.
(30% to 40%) than other caregivers, such as those who provide help Some studies suggest that distress remains unchanged or even
to individuals with schizophrenia (20%) or stroke (19%).428,430,431 increases after a relative is admitted to a residential care facil-
∙ Among spousal caregivers, having a partner with dementia is asso- ity for some caregivers (such as spouses), but other studies have
ciated with a 30% increase in depressive symptoms compared with found that distress declines following admission overall for demen-
spousal caregivers of partners without dementia.432 tia caregivers.396,442–443
∙ In a meta-analysis, the type of relationship was the strongest pre- ∙ The demands of caregiving may intensify as people with demen-
dictor of caregiver depression; caregivers of spouses with demen- tia approach the end of life.444 In the year before the death of the
tia had two-and-a-half times higher odds of having depression than person living with dementia, 59% of caregivers felt they were “on
caregivers of people with dementia who were not spouses.428 duty” 24 hours a day, and many felt that caregiving during this time
∙ The prevalence of anxiety among dementia caregivers is 44%, which was extremely stressful.445 The same study found that 72% of fam-
is higher than among caregivers of people with stroke (31%).428 ily caregivers experienced relief when the person with Alzheimer’s
∙ Caregivers of individuals with Alzheimer’s report more subjective or another dementia died.445 In the last 12 months of life, people
cognitive problems (for example, problems with memory) and expe- with dementia relied on more hours of family care (64.5 hours per
rience greater declines in cognition over time than non-caregivers week) than people with cancer (39.3 hours per week).446 In addition,
matched on age and other characteristics.433,434 caregivers living with a family member with dementia pay for 64%
∙ Caring for people with dementia who have four or more behav- of total care costs incurred during their family member’s last seven
ioral and psychological symptoms (for example, aggression, self- years of life.447
356

TA B L E 9 Percentage of Dementia Caregivers Reporting Health Conditions by State

% of Caregivers % of Caregivers
Reporting at % of % of Caregivers Reporting at % of % of Caregivers
Least One Caregivers Reporting Least One Caregivers Reporting
Chronic Reporting Frequent Poor Chronic Reporting Frequent Poor
State Condition Depression Physical Health State Condition Depression Physical Health
Alabama 59.8 28.3 12.9 Montana 56.9 22.8 10.0
Alaska * * * Nebraska 55.6 19.3 8.8
Arizona 53.5 15.4 9.9 Nevada 80.2 18.3 *
Arkansas 73.4 23.4 11.4 New Hampshire † † †
California * * * New Jersey 68.1 27.4 13.0
Colorado 73.1 23.2 14.0 New Mexico 56.3 34.2 7.9
Connecticut 47.0 17.6 * New York 52.2 28.4 17.0
Delaware † † † North Carolina † † †
District of 65.1 20.5 * North Dakota 62.0 14.4 14.0
Columbia
Florida 47.8 16.3 * Ohio 67.8 13.6 16.1
Georgia 54.0 21.6 13.7 Oklahoma 53.5 27.5 *
Hawaii 65.3 14.9 10.5 Oregon 53.7 19.9 16.7
Idaho 73.7 30.8 16.7 Pennsylvania 62.0 24.0 16.1
Illinois 53.5 21.4 16.7 Rhode Island 54.8 27.4 14.9
Indiana 64.0 26.8 6.9 South Carolina 54.2 21.9 11.8
Iowa 63.9 28.7 11.8 South Dakota 40.9 9.4 65.8
Kansas 62.9 23.5 13.5 Tennessee 66.7 29.8 17.0
Kentucky 69.6 27.1 20.2 Texas 56.4 10.7 *
Louisiana 54.7 20.8 16.7 Utah 69.0 22.3 10.7
Maine 69.8 25.4 11.1 Vermont † † †
Maryland 68.8 27.7 13.6 Virginia 60.4 23.6 13.8
Massachusetts † † † Washington † † †
Michigan 59.2 27.2 21.5 West Virginia 72.2 25.3 16.6
Minnesota 55.3 29.9 14.4 Wisconsin 57.0 17.8 10.7
Mississippi 60.2 14.9 11.0 Wyoming 46.4 17.1 15.0
Missouri 64.1 35.8 13.3 National 57.5% 24.4% 13.0%
375
Created from data from the Behavioral Risk Factor Surveillance System (BRFSS) survey.
*Data not included because the sample size was less than 50 or the relative standard error was greater than 50%.
†
State did not collect data between 2015–2017.

Caregiver physical health and health conditions mental health. Table 9 presents state-by-state data on the health sta-
For some caregivers, the demands of caregiving may cause declines tus of dementia caregivers and Table 10 compares the percentages
in their own health. Evidence suggests that the stress of providing of dementia caregivers, non-dementia caregivers, and non-caregivers
dementia care increases caregivers’ susceptibility to disease and health who report having a specific chronic health condition.
complications.448 As shown in Figure 10, 38% of Alzheimer’s and other
dementia caregivers indicate that the physical stress of caregiving is General health
high to very high.A8 The distress associated with caring for a relative Seventy-four percent of caregivers of people with Alzheimer’s or other
with Alzheimer’s or another dementia has also been shown to neg- dementias reported that they were “somewhat concerned” to “very
atively influence the quality of family caregivers’ sleep.449,450 Com- concerned” about maintaining their own health since becoming a care-
pared with those of the same age who were not caregivers, caregivers giver.A8 A 2017 poll found that 27% of dementia caregivers delayed or
of people with dementia are estimated to lose between 2.4 hours and did not do things they should to maintain their own health.377 Demen-
3.5 hours of sleep a week.450 In addition, many caregivers may con- tia caregivers indicate lower health-related quality of life than non-
tend with health challenges of their own. Tables 9 and 10 present data caregivers and are more likely than non-caregivers or other caregivers
from 44 states and the District of Columbia on caregiver physical and to report that their health is fair or poor.410,451,452 Data from the
 357

TA B L E 1 0 Percentage of Dementia Caregivers Who Report caregivers who perceive little or no strain.470 In contrast, a longitudinal
Having a Chronic Health Condition Compared with Caregivers of analysis of the Health and Retirement Study found that dementia care-
People without Dementia or Non-Caregivers
givers were less likely to die than non-caregivers of similar age over a
Dementia Non-Dementia Non- 12-year period. These results are consistent with a protective effect of
Condition Caregivers Caregivers Caregivers dementia care, at least as it pertains to death.467 The findings are also
Stroke 5.2% 3.4% 3.2% consistent with the possibility that individuals who assume dementia
Coronary heart 8.3% 7.2% 6.6% care roles do so in part because their initial health allows them to do so.
disease Eighteen percent of spousal caregivers die before their partners with
Cardiovascular 11.8% 9.5% 8.6% dementia.471
disease*
Caregiver employment and finances
Diabetes 12.8% 11.1% 11.3%
Six in 10 caregivers of people with Alzheimer’s or another dementia
Cancer 14.3% 13.3% 11.5%
were employed or had been employed in the prior year while pro-
Obesity 32.7% 34.6% 29.5%
viding care.374 These individuals worked an average of 35 hours per
Table includes caregivers age 18 and older. week while caregiving.374 Among people who were employed in the
*Combination of coronary heart disease and stroke. past year while providing care to someone with Alzheimer’s or another
dementia, 57% reported sometimes needing to go in late or leave early
Health and Retirement Study showed that dementia caregivers who compared with 47% of non-dementia caregivers. Eighteen percent of
provided care to spouses were much more likely (41% increased odds) dementia caregivers reduced their work hours due to care responsi-
than other spousal caregivers of similar age to become increasingly bilities, compared with 13% of non-dementia caregivers. Other work-
frail during the time between becoming a caregiver and their spouse’s related changes among dementia and non-dementia caregivers who
death.453 Other studies, however, suggest that caregiving tasks have had been employed in the past year are summarized in Figure 11.374
the positive effect of keeping older caregivers more physically active In 2020, it is estimated that dementia caregivers bore nearly twice
than non-caregivers.454 the average out-of-pocket costs of non-dementia caregivers ($11,535
versus $6,209).364,472 Examples of these costs include costs of med-
Physiological changes
ical care, personal care and household expenses for the person with
The chronic stress of caregiving may be associated with an increased
dementia, and personal expenses and respite services for the care-
incidence of hypertension404,455–462 and a number of physiological
giver. Data from the 2016 Alzheimer’s Association Family Impact of
changes that could increase the risk of developing chronic condi-
Alzheimer’s Survey indicated that among care contributors (a friend
tions, including high levels of stress hormones,434 impaired immune
or relative who paid for dementia expenses and/or provided care for
function,404,456 slow wound healing457 and coronary heart disease.458
someone with dementia at least once a month in the prior year),
A recent meta-analysis of studies examining the associations between
48% cut back on other spending and 43% cut back on savings due to the
family caregiving, inflammation and immune function suggests that
out-of-pocket costs of providing help to someone with dementia.411
dementia caregivers had slight reductions in immune function and
Due to care responsibilities in the year prior to the survey, close to 4
modestly elevated inflammation.463 However, a study of physiological
in 10 care contributors indicated that the “food they bought just didn’t
changes before and after the start of caregiving found no change on six
last, and they didn’t have money to get more,” and 3 in 10 ate less
biomarkers of inflammation among dementia caregivers.464
because of care-related costs.411
Health care One in 5 caregivers of people with Alzheimer’s or other dementias
When persons with dementia also have depression, behavioral distur- (22%) report problems dealing with a bank or credit union when help-
bances or low functional status, their caregivers face a higher risk of ing to manage the finances of people living with dementia, compared
emergency department visits and hospitalization compared with care- with 9% of caregivers of people without dementia.374
givers of persons with dementia alone.465,466 Increased depressive
Effects of stress and other caregiving factors on people with dementia
symptoms among caregivers over time are linked to more frequent
Research has documented the effects of caregiver stress on people
doctor visits, increased outpatient tests and procedures, and greater
with dementia and their use of health care services. For example, dis-
use of over-the-counter and prescription medications.466
tress on the part of family caregivers is associated with increased odds
Mortality of institutionalization of the person with dementia, exacerbated behav-
Studies of how the health of people with dementia affects their care- ioral and psychological challenges in the person with dementia, and
givers’ risk of dying have had mixed findings.467,468 For example, care- increased likelihood of people with dementia being abused.473 Individ-
givers of spouses who were hospitalized and had dementia were more uals with dementia are more likely to be hospitalized if their caregiver
likely to die in the following year than caregivers whose spouses were has less than one year of caregiving experience when compared with
hospitalized but did not have dementia (after accounting for differ- caregivers who have provided assistance for more than one year.474
ences in caregiver age).469 In addition, caregivers who perceive higher See the Use and Costs of Health Care, Long-Term Care, and Hospice
strain due to care responsibilities were at higher risk for death than section for additional information.
358

F I G U R E 1 1 Work-related changes among caregivers of people with Alzheimer’s or other dementias who had been employed at any time since
they began caregiving. Created from data from the National Alliance for Caregiving and AARP.374

TA B L E 1 1 Type and Focus of Caregiver Interventions

Type Focus
Case management Provides assessment, information, planning, referral, care coordination and/or advocacy for family caregivers.
Psychoeducational Include structured programs that provide information about the disease, resources and services, and about how to
approaches expand skills to effectively respond to symptoms of the disease (for example, 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.
Psychotherapeutic Involve the establishment of a therapeutic relationship between the caregiver and a professional therapist (for
approaches example, cognitive-behavioral therapy for caregivers to focus on identifying and modifying beliefs related to
emotional distress, developing new behaviors to deal with caregiving demands, and fostering activities that can
promote caregiver well-being).
Respite Provides planned, temporary relief for the caregiver through the provision of substitute care; examples include adult
day services and in-home or institutional respite care for a certain number of weekly hours.
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 isolation.
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.408 and Gaugler et al.475

5.1.9 Interventions designed to assist caregivers caregiving. Some also aim to delay nursing home admission of the per-
son with dementia by providing caregivers with skills and resources
For more than 30 years, strategies to support family caregivers of peo- (emotional, social, psychological and/or technological) to continue
ple with dementia have been developed and evaluated. The types and helping their relatives or friends at home. Specific approaches used in
focus of these strategies (often called “interventions”) are summarized various interventions include providing education to caregivers, help-
in Table 11.408,475 ing caregivers manage dementia-related symptoms, improving social
In general, the goal of interventions is to improve the health and support for caregivers and providing caregivers with respite from care-
well-being of dementia caregivers by relieving the negative aspects of giving duties.
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According to a publication on dementia caregiver interventions that also required, as is research on specific intervention needs for LGBT
reviewed seven meta-analyses and 17 systematic reviews of random- caregivers.369
ized controlled trials, the following characteristics distinguish inter- In 2019, the National Institute on Aging (NIA) awarded fund-
ventions that are effective: family caregivers are actively involved in ing to create the NIA Imbedded Pragmatic AD/ADRD Clinical Tri-
the intervention, in contrast to passively receiving information; the als (IMPACT) Collaboratory. The Collaboratory includes experts from
intervention is tailored and flexible to meet the changing needs of fam- more than 30 research institutions and will support pilot trials to test
ily caregivers during the course of a relative’s dementia; and the inter- non-drug, care-based interventions for people living with dementia.
vention meets the needs not only of caregivers, but of people living with The goal of IMPACT is to expedite the timeline of research implemen-
dementia as well.476 A 2012 report examined randomized, controlled tation in real-world settings to improve care for people living with
studies of caregiver interventions and identified 44 interventions that dementia and their caregivers. In 2020, the Centers for Disease Con-
benefited individuals with dementia as well as caregivers. More such trol and Prevention established three Public Health Centers of Excel-
interventions are emerging each year.477–482 A meta-analysis exam- lence to disseminate best practices and tools to local, tribal and state
ining the components of dementia caregiver interventions that are public health organizations throughout the United States that sup-
most beneficial found that interventions that initially enhance care- port dementia caregivers, encourage early detection of Alzheimer’s
giving competency, gradually address the care needs of the person and reduce the risk of dementia, respectively.
with dementia, and offer emotional support for loss and grief when
needed appeared most effective.483 Recent meta-analyses suggest
that specific intervention types (psychoeducation; see Table 11) may 5.2 Paid caregivers
result in a small reduction in burden for caregivers, with other meta-
analyses reporting broader effects of various interventions across mul- 5.2.1 Direct-care workers for people with
tiple dementia caregiver outcomes.484,485 A meta-review of over 60 Alzheimer’s or other dementias
meta-analyses and systematic reviews of dementia caregiver inter-
ventions indicate that although various interventions may have posi- Direct-care workers, such as nurse aides, home health aides, and per-
tive effects on depression and other measures of caregiver well-being, sonal and home care aides provide most of the paid long-term care to
challenges related to how interventions are reported and classified older adults living at home or in residential settings.515,516 In nursing
has made it difficult to ascertain what works and why for dementia homes, nursing assistants make up the majority of staff who work with
caregivers.486 cognitively impaired residents.517–519 Nursing assistants help with
Interventions for dementia caregivers that have demonstrated effi- bathing, dressing, housekeeping, food preparation and other activities.
cacy in scientific evaluations have been gradually implemented in Most nursing assistants are women, and they come from increasingly
the community, but are still not widespread or available to all family diverse ethnic, racial and geographic backgrounds.
caregivers.487,488 When interventions are implemented, they are gen- Direct-care workers have difficult jobs, and they may not receive
erally successful at improving how caregiver services are delivered, the training necessary to provide dementia care.518,520–523 Turnover
and have the potential to reach a large number of families while also rates are high among direct-care workers, and recruitment and reten-
helping caregivers cope with their responsibilities.489 In one exam- tion are persistent challenges.521,524 Inadequate education and chal-
ple, researchers utilized an “agile implementation” process to more lenging work environments have also contributed to higher turnover
rapidly select, localize, evaluate and replicate a collaborative care rates among nursing staff across care environments.357 Studies have
model for dementia care. This care model has successfully operated shown that staff training programs to improve the quality of dementia
for nearly a decade in an Indianapolis health care system.490 Other care in nursing homes and hospitals have modest benefits.520,525–529
efforts have attempted to broaden the reach and accessibility of inter- The National Academies of Sciences, Engineering, and Medicine have
ventions for dementia caregivers through the use of technologies (for recommended changes to federal requirements for general direct-care
instance, video-phone delivery and online training),491–497 while oth- worker training, including an increase in training hours from 75 to
ers have integrated evidence-based dementia care interventions into 120, and instructional content with a stronger focus on knowledge
community-based programs.489 and skills related to caring for individuals with Alzheimer’s and other
Because caregivers and the settings in which they provide care are dementias.521,522
diverse, more studies are required to define which interventions are
most effective for specific situations and how these interventions are
successful.498–501 Improved tools and measures to personalize ser- 5.2.2 Shortage of geriatric health care
vices for caregivers to maximize their benefits represent an emerg- professionals
ing area of research.502–507 More studies are also needed to adapt
proven interventions or develop new intervention approaches for Professionals who may receive special training in caring for older adults
families from different racial, ethnic and socioeconomic backgrounds include physicians, nurse practitioners, registered nurses, social work-
and in different geographic settings (see the Special Report).508–514 ers, pharmacists, physician assistants and case workers.521 As summa-
Additional research on interventions focused on disease stages is rized in the 2020 Alzheimer’s Disease Facts and Figures Special Report,
360

On the Front Lines: Primary Care Physicians and Alzheimer’s Care in Amer- these models encourage health care providers to deliver evidence-
ica, the United States would have to triple the number of geriatricians based services and support to both caregivers and people living with
who were practicing in 2019 to effectively care for those 65 and older dementia.557–559
who are projected to have Alzheimer’s dementia in 2050.530,531 There In January 2017, Medicare began reimbursing physicians, physician
were 290,000 nurse practitioners in the United States in 2020. Thir- assistants, nurse practitioners and clinical nurse specialists for health
teen percent of nurse practitioners had special expertise in geronto- care visits that result in a comprehensive dementia care plan. Com-
logical care.532 Less than 1% of registered nurses, physician assistants prehensive care planning is a core element of effective dementia care
and pharmacists identify themselves as specializing in geriatrics.521 management and can result in the delivery of services that potentially
Although 73% of social workers serve clients age 55 and older, only 4% enhance quality of life for people with dementia and their caregivers.
have formal certification in geriatric social work.521 Furthermore, the In the first year the care planning benefit was available, less than 1%
overall aging of the long-term care workforce may affect the number of of those with Alzheimer’s disease or other dementias received a com-
paid caregivers.357 prehensive dementia care plan. In seven states (Alaska, Montana, New
Hampshire, North Dakota, Rhode Island, South Dakota and Vermont)
and the District of Columbia, no fee-for-service Medicare beneficia-
5.2.3 Enhancing health care for family caregivers ries received a comprehensive dementia care plan. Use of the Medi-
care care planning benefit did increase throughout the year (3.3 times
There is a growing consensus that professionals should acknowledge greater in the fourth quarter of 2017 compared with the first quarter
the role family caregivers play in facilitating the treatment of demen- of 2017), although the rate of use remained low.560 The Alzheimer’s
tia, and that professionals should assess the well-being of family care- Association has developed a care planning kit (alz.org/careplanning) to
givers to improve overall disease management of the person with help guide providers to deliver effective care planning for people with
dementia.533–535 The complex care challenges of people with demen- dementia and their family caregivers.
tia also require interprofessional collaboration and education.536–539
Ongoing efforts have attempted to integrate innovative care manage-
ment practices with traditional primary care for people with demen- 5.3 Trends in dementia caregiving
tia. One example involves a skilled professional who serves as the care
manager of the person with dementia. The care manager collaborates There is some indication that families are now better at managing the
with primary care physicians and nurse practitioners to develop per- care they provide to relatives with dementia than in the past. From
sonalized care plans. These plans can provide support to family care- 1999 to 2015, dementia caregivers were significantly less likely to
givers, help people with dementia manage care transitions (for exam- report physical difficulties (from 30% in 1999 to 17% in 2015) and
ple, a change in care provider or site of care) and ensure the person financial difficulties (from 22% in 1999 to 9% in 2015) related to
with dementia has access to appropriate community-based services. care provision. In addition, use of respite care by dementia caregivers
Other models include addressing the needs of family caregivers simul- increased substantially (from 13% in 1999 to 27% in 2015).398 How-
taneously with comprehensive disease management of people living ever, as noted earlier, more work is needed to ensure that interven-
with dementia to improve the quality of life of both.540 Several evalu- tions for dementia caregivers are available and accessible to those
ations have suggested that such approaches have considerable poten- who need them. A 2016 study of the Older Americans Act’s National
tial for improving outcomes for people with dementia and their family Family Caregiver Support Program found that over half (52%) of
caregivers (for example, delayed nursing home admission and reduc- Area Agencies on Aging did not offer evidence-based family caregiver
tion in caregiver distress).541–551 Current research is attempting to interventions.561
determine the feasibility of these models beyond the specialty set- The Alzheimer’s Association has undertaken several efforts to
tings in which they currently operate.552–555 One approach to accel- improve how dementia care is studied and delivered. Its recent demen-
erate the adoption of dementia care innovations is to reform payment tia care practice recommendations562 place individuals with demen-
reimbursement strategies for providers, such as paying for services tia and their caregivers at the center of how care should be delivered
provided to caregivers and identifying metrics of success in dementia (see Figure 12). Essential to this model is the need to reconsider how
care.556 we measure and design care for people with dementia by moving away
In 2016, the National Academies of Sciences, Engineering, and from an approach that focuses on loss of abilities to an approach that
Medicine released Families Caring for an Aging America, a seminal report emphasizes the individual’s unique needs, personal experiences and
that includes a number of recommendations to refocus national health strengths. This person-centered care philosophy not only values and
care reform efforts from models of care that center on the patient respects the individual with dementia, but also promotes well-being
(person-centered care) to models of care that also explicitly engage and health.563,564 This framework is designed to shift how researchers
and support the patient’s family (family-centered care).557 These ser- and care providers think about dementia, and may point the way to
vice models recognize the important role family members play in a greater understanding of the resilience, adaptability, and the pos-
providing care and incorporate family caregivers during the deliv- sibilities of maintenance or even improvement of skills and abilities
ery of health care to their relatives with dementia. Furthermore, when living with dementia.565,566 A core element of this and other
 361

FIGURE 12 Person-centered care delivery. Created from data from the Alzheimer’s Association.562

frameworks is ensuring that every experience and interaction is seen as their relatives, whereas relying on residential care staff rather than
an opportunity to have authentic and meaningful engagement, which in family members to engage in communication resulted in lower per-
turn helps create a better quality of life for the person with dementia. ceived well-being among family caregivers and their relatives.569 Tele-
phone interviews with family caregivers in rural Virginia following the
governor’s stay-at-home order found that those who were more con-
5.4 COVID-19 and dementia caregiving cerned about the COVID-19 pandemic and those who received less
help from family and friends experienced greater feelings of emotional
Although much of what is known about COVID-19 and dementia exhaustion and fatigue related to dementia care.570
caregiving remains anecdotal, preliminary reports indicate that the Concerns about COVID-19 in long-term care settings arise from the
COVID-19 pandemic has posed significant challenges to family mem- devastating burden it has placed on residents and staff: about 40% of
bers and friends who provide care for people with dementia.567 Care- COVID-19 deaths in the United States are residents or staff of long-
givers have been limited in or completely barred from visiting and com- term care facilities.571 The lack of preparation of many residential long-
municating with relatives who live in long-term care residences due to term care settings to effectively manage, contain and prevent the rapid
COVID-19 lockdown procedures. Adult day programs in many states spread of COVID-19 has had a detrimental effect on not only resi-
have been interrupted or closed. These and other factors shaped by the dents and their family caregivers in terms of their social well-being and
COVID-19 pandemic have caused emotional distress and other neg- health, but also on professional care staff. Media reports, observational
ative outcomes among caregivers.568 Data are beginning to emerge evidence, and limited research to date have suggested that the lack
from studies documenting the experience for dementia caregivers dur- of personal protective equipment (PPE), lack of transparent commu-
ing COVID-19. For example, family caregivers who are able to engage nication about the extent of COVID-19 outbreaks within and across
in more direct phone and email contact with relatives in long-term care facilities, work-related strain due to COVID-19 management proto-
residences indicated greater emotional well-being for themselves and cols, and increases and abrupt changes in workload have all contributed
362

to a nearly untenable work situation for various types of staff in

residential long-term care.572,573 Although direct care workers, admin-
istrators, and directors of residential long-term care settings have
rightfully received praise for their often heroic efforts to continue to
provide care in nursing homes or other residential long-term care set-
tings, whether these staff are receiving meaningful support to suc-
cessfully manage their feelings of emotional strain, bereavement (due
to the high proportion of resident deaths concentrated in residential
long-term care due to COVID-19) or other adverse consequences is
unknown. Several clinical and policy experts have noted that COVID-
19 has laid bare and exacerbated structural inequities in how residen-
tial long-term care is financed and regulated, and that short of pay-
ment reform, improved reporting, incentive restructuring, and signifi-
cant environmental changes, residential long-term care settings such F I G U R E 1 3 Distribution of aggregate costs of care by payment
as nursing homes will again be susceptible to future pandemics or simi- source for Americans age 65 and older with Alzheimer’s or other
lar crises.574 dementias, 2021. Data are in 2021 dollars. “Other” payment sources
include private insurance, health maintenance organizations, other
At the outset of the pandemic, the National Institutes of Health
managed care organizations and uncompensated care. Created from
and other federal agencies issued multiple requests for rapid grant
data from the Lewin Model.A11
applications to study and design interventions to mitigate the effects
of COVID-19 on people with dementia and their caregivers. The
Alzheimer’s Association also provides regularly updated guidance for TA B L E 1 2 Average Annual Per-Person Payments by Payment
dementia caregivers and professional care providers as the pandemic Source for Health Care and Long-Term Care Services, Medicare
Beneficiaries Age 65 and Older, with and without Alzheimer’s or
unfolds.575
Other Dementias, in 2020 Dollars

Beneficiaries with Beneficiaries without

Alzheimer’s or Other Alzheimer’s or Other
6 USE AND COSTS OF HEALTH CARE,
Payment Source Dementias Dementias
LONG-TERM CARE AND HOSPICE
Medicare $26,358 $8,102
Medicaid 9,178 391
The costs of health care and long-term care for individuals with
Alzheimer’s or other dementias are substantial, and dementia is one of Uncompensated 408 409

the costliest conditions to society.576 Total payments in 2021 (in 2021 Health maintenance 1,351 1,655
organization
dollars) for all individuals with Alzheimer’s or other dementias are esti-
mated at $355 billion (Figure 13), not including the value of informal Private insurance 2,414 1,524

caregiving that is described in the Caregiving section. Medicare and Other payer 1,004 259
Medicaid are expected to cover $239 billion, or 67%, of the total health Out of pocket 11,571 2,503
care and long-term care payments for people with Alzheimer’s or other Total* 52,481 14,976
dementias. Out-of-pocket spending is expected to be $76 billion, or
*Payments from sources do not equal total payments exactly due to
22% of total payments.A11 Throughout the rest of this section, all costs
the effects of population weighting. Payments for all beneficiaries with
are reported in 2020 dollars unless otherwise indicated.A12 Alzheimer’s or other dementias include payments for community-dwelling
and facility-dwelling beneficiaries.
Created from unpublished data from the Current Medicare Beneficiary Sur-
vey for 2011.240
6.1 Total cost of health care and long-term care

Table 12 reports the average annual per-person payments for health Despite these and other sources of financial assistance, individu-
care and long-term care services for Medicare beneficiaries age 65 als with Alzheimer’s or other dementias still incur high out-of-pocket
and older with and without Alzheimer’s or other dementias. Total per- costs. These costs are for Medicare copayments and coinsurance, other
person health care and long-term care payments in 2020 from all health insurance premiums, deductibles, copayments, coinsurance and
sources for Medicare beneficiaries with Alzheimer’s or other demen- services not covered by Medicare, Medicaid or additional sources of
tias were over three times as great as payments for other Medicare support. On average, Medicare beneficiaries age 65 and older with
beneficiaries in the same age group ($52,481 per person for those Alzheimer’s or other dementias paid $11,571 out of pocket annually for
with dementia compared with $14,976 per person for those without health care and long-term care services not covered by other sources
dementia).A13,240 (Table 12).240
 363

Researchers have evaluated the additional or “incremental” health 6.2 Use and costs of health care services
care, residential long-term care and family caregiving costs of demen-
tia (that is, the costs specifically attributed to dementia when com- 6.2.1 Use of health care services
paring people with and without dementia who have the same coexist-
ing medical conditions and demographic characteristics).363,576–578 In People with Alzheimer’s or other dementias have twice as many hos-
a recent systematic review of studies of older adults with Alzheimer’s pital stays per year as other older people.340 Moreover, the use of
and other dementias enrolled in private Medicare managed care plans, health care services by people with other serious medical conditions is
researchers found a wide range of incremental costs attributable to strongly affected by the presence or absence of dementia. In particular,
Alzheimer’s and other dementias.579 One group of researchers found people with coronary artery disease, diabetes, chronic kidney disease,
that the incremental health care and nursing home costs for those with chronic obstructive pulmonary disease (COPD), stroke or cancer who
dementia were $28,501 per person per year in 2010 dollars ($38,053 also have Alzheimer’s or other dementias have higher use and costs of
in 2020 dollars).A14,576 Another research team found that the five-year health care services than people with these medical conditions but no
incremental cost of dementia, based on Medicare claims, was $15,704 coexisting dementia.
(in 2017 dollars; $17,134 in 2020 dollars), with the additional costs of In addition to having more hospital stays, older people with
care in the first year after diagnosis representing 46% of the five-year Alzheimer’s or other dementias have more skilled nursing facility stays
incremental costs.580 A third group of researchers found that the incre- and home health care visits per year than other older people.
mental lifetime cost of Alzheimer’s dementia was substantially higher
for women than men, due to women both having a longer duration ∙ Hospital. There are 538 hospital stays per 1,000 Medicare beneficia-
of illness and spending more time in a nursing home.581 Additionally, ries age 65 and older with Alzheimer’s or other dementias compared
because women are more likely to be widowed and living in poverty, with 266 hospital stays per 1,000 Medicare beneficiaries age 65 and
the incremental Medicaid costs associated with Alzheimer’s dementia older without these conditions.340 A person with dementia in 2012
were 70% higher for women than men. A fourth group of researchers had, on average, 23 inpatient days — defined as days in a hospital or
found that the lifetime cost of care, including out-of-pocket costs, skilled nursing facility — compared with five days for the Medicare
Medicare and Medicaid expenditures, and the value of informal care- population as a whole.585 The most common reasons for hospitaliza-
giving, was $321,780 per person with Alzheimer’s dementia in 2015 tion of people with Alzheimer’s dementia are syncope (fainting), fall
dollars ($373,527 in 2020 dollars).363 The lifetime cost of care for indi- and trauma (26%); ischemic heart disease (17%); and gastrointesti-
viduals with Alzheimer’s dementia was more than twice the amount nal disease (9%) (Figure 14),586 although the COVID-19 pandemic
incurred by individuals without Alzheimer’s dementia, translating into may have changed the most common reasons for hospitalization in
an incremental lifetime cost of Alzheimer’s dementia of $184,500 2020. A study of inpatient hospitalizations of adults age 60 and older
($214,170 in 2020 dollars). found that those with Alzheimer’s dementia were at 7% greater risk
Several groups of researchers have examined the additional out-of- of dying during the hospital stay and stayed nearly a day longer
pocket costs borne by individuals with Alzheimer’s or other dementias. than individuals without Alzheimer’s dementia.587 Among Medicare
In an analysis of the lifetime incremental cost of dementia, researchers beneficiaries with Alzheimer’s or other dementias, 22% of hospital
found that individuals with dementia spent $38,540 (in 2014 dollars; stays are followed by a readmission within 30 days.588 Although not
$45,915 in 2020 dollars) more out of pocket between age 65 and death, directly comparable, one study of a portion of Medicare beneficia-
due to nursing home care.582 Another group of researchers found ries found an overall readmission rate of 18%.589 The proportion of
that community-dwelling individuals age 65 and older with Alzheimer’s hospital stays followed by a readmission within 30 days remained
dementia had $1,101 (in 2012 dollars; $1,376 in 2020 dollars) higher relatively constant between 2008 and 2018 (23% in 2007 versus
annual out-of-pocket health care spending than individuals without 22% in 2018).
Alzheimer’s dementia, after controlling for differences in patient char- ∙ Emergency department. Overall, 1.3% of all emergency department
acteristics, with the largest portion of the difference being due to visits were for people with Alzheimer’s or another dementia.590
higher spending on home health care and prescription drugs.583 Fur- There are 1,545 emergency department visits per 1,000 Medi-
thermore, individuals with Alzheimer’s dementia spend 12% of their care beneficiaries with Alzheimer’s or other dementias per year,
income on out-of-pocket health care services compared with 7% for including emergency department visits that result in a hospital
individuals without Alzheimer’s dementia.580 admission.588 Although not directly comparable, there were 640
Other researchers compared end-of-life costs for individuals with emergency department visits per 1,000 Medicare beneficiaries
and without dementia and found that the total cost in the last five per year based on a review of utilization patterns of a subset of
years of life was $287,038 per person for individuals with dementia in Medicare beneficiaries.589 Emergency department visits for peo-
2010 dollars and $183,001 per person for individuals without demen- ple with Alzheimer’s or other dementias per 1,000 Medicare ben-
tia ($383,242 and $244,336, respectively, in 2020 dollars), a difference eficiaries increased 28% between 2008 and 2018 (from 1,265 to
of 57%.584 Additionally, out-of-pocket costs represented a substan- 1,545), similar to the increases in emergency department visits for
tially larger proportion of total wealth for those with dementia than for individuals with cancer, ischemic heart disease and heart failure
people without dementia (32% versus 11%). (Figure 15).588
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F I G U R E 1 4 Reasons for hospitalization of individuals with Alzheimer’s dementia: Percentage of hospitalized individuals by admitting
diagnosis. All hospitalizations for individuals with a clinical diagnosis of probable or possible Alzheimer’s were used to calculate percentages. The
remaining 37% of hospitalizations were due to other reasons. Created from data from Rudolph et al.586

F I G U R E 1 5 Percentage changes in emergency department visits per 1,000 fee-for-service Medicare beneficiaries for selected health
conditions between 2008 and 2018. Includes Medicare beneficiaries with a claims-based diagnosis of each chronic condition. Beneficiaries may
have more than one chronic condition. Created from data from the U.S. Centers for Medicare & Medicaid Services.588

∙ Skilled nursing facility. Skilled nursing facilities provide direct medi- ∙ Home health care. Twenty-five percent of Medicare beneficiaries
cal care that is performed or supervised by registered nurses, such as age 65 and older with Alzheimer’s or other dementias have at
giving intravenous fluids, changing dressings and administering tube least one home health visit during the year, compared with 10%
feedings.591 There are 283 skilled nursing facility stays per 1,000 of Medicare beneficiaries age 65 and older without Alzheimer’s
beneficiaries with Alzheimer’s or other dementias per year com- or other dementias.340 Medicare covers home health services,
pared with 73 stays per 1,000 beneficiaries without these conditions such as part-time skilled nursing care, home health aide (per-
— a rate nearly four times as great.340 sonal hands-on) care, therapies, and medical social services in
 365

TA B L E 1 3 Average Annual Per-Person Payments by Type of costs were significantly higher for individuals with dementia than for
Service for Health Care and Long-Term Care Services, Medicare those with either mild cognitive impairment (MCI) or without cognitive
Beneficiaries Age 65 and Older, with and without Alzheimer’s or
impairment.593 Annual health care costs for individuals with MCI were
Other Dementias, in 2020 Dollars
not significantly different, however, from costs for individuals without
Beneficiaries with Beneficiaries without cognitive impairment.
Alzheimer’s or Other Alzheimer’s or Other
Several groups of researchers have found that both health care and
Services Dementias Dementias
prescription drug spending are significantly higher in the year prior to
Inpatient hospital $11,933 $3,855
diagnosis,594–596 two years prior to diagnosis,597 and one year after
Medical provider* 5,862 3,651 diagnosis,580,594,595 compared with otherwise similar individuals not
Skilled nursing facility 7,405 507 diagnosed with Alzheimer’s or another dementia, although there are
Nursing home 16,964 822 differences in the sources of increased spending. In one study, the
Hospice 2,240 170 largest differences were in inpatient and post-acute care,595 while
Home health care 2,804 407 in another study the differences in spending were primarily due to
outpatient care, home care and medical day services.596 In a third
Prescription 3,534 3,031
medications** study, the differences were due to home health care, skilled nursing
care and durable medical equipment.597 Additionally, three groups of
*“Medical provider” includes physician, other provider and laboratory ser-
vices, and medical equipment and supplies. researchers have found that spending in the year after diagnosis was
**Information on payments for prescription medications is only available for higher than for individuals not diagnosed with the disease, by amounts
people who were living in the community, that is, not in a nursing home or an ranging from $7,264 in 2017 dollars, based on individuals with fee-
assisted living facility.
for-service Medicare coverage ($7,925 in 2020 dollars)580 to $17,852
Created from unpublished data from the Current Medicare Beneficiary Sur-
vey for 2011.240 in additional costs in 2014 dollars in the year after diagnosis, based
on another group of individuals with Medicare fee-for-service cov-

the home, but does not include homemaker or personal care erage ($21,268 in 2020 dollars).595 One group of researchers, how-

services. ever, found no difference in health care spending in the two years
after diagnosis.597 In research that has examined health care costs
after dementia diagnosis, one research team found that the incremen-
6.2.2 Costs of health care services tal costs remained higher in the second year after diagnosis ($7,327 in
additional costs in 2014 dollars [$8,729 in 2020 dollars]).595 Another
Average per-person payments for health care services (hospital, physi- research team found that health care costs remained higher in the
cian and other medical provider, nursing home, skilled nursing facil- second through fourth years after a dementia diagnosis, although the
ity, hospice and home health care) and prescription medications were incremental costs decreased over time, from $4,241 ($4,627 in 2020
higher for Medicare beneficiaries with Alzheimer’s or other demen- dollars) in year two to $1,302 ($1,421 in 2020 dollars) in year four,
tias than for other Medicare beneficiaries in the same age group (see but were not significantly different in the fifth year after diagnosis.580
Table 13).240 Researchers have also found a similar increase in health care costs in
the two years after a diagnosis of MCI, although the additional costs
6.2.3 Use and costs of health care service by state were lower than for dementia.595 One possible explanation for the
spike in health care costs in the year immediately before and the year
Substantial geographic variation exists in health care utilization and immediately after diagnosis of Alzheimer’s or another dementia relates
Medicare payments by individuals with Alzheimer’s or other demen- to delays in timely diagnosis. One group of researchers found that indi-
tias (see Table 14), similar to the geographic variation observed for viduals with cognitive decline who sought care from a specialist (that is,
Medicare beneficiaries with other medical conditions.592 Emergency a neurologist, psychiatrist or geriatrician) had a shorter time to diagno-
department visits, including visits that result in a hospital admission, sis of Alzheimer’s disease.598 Additionally, individuals diagnosed with
range from 1,153 per 1,000 beneficiaries in Nebraska to 1,811 per cognitive impairment by a specialist had lower Medicare costs in the
1,000 beneficiaries in West Virginia, and the percentage of hospital year after receiving a diagnosis of Alzheimer’s dementia than those
stays followed by hospital readmission within 30 days ranges from diagnosed by a non-specialist.
16% in Hawaii to 25.8% in Nevada. Medicare spending per capita
ranges from $18,320 in North Dakota to $36,533 in Nevada (in 2020
dollars).588 6.2.5 Impact of Alzheimer’s and other dementias
on the use and costs of health care in people with
6.2.4 Use and costs of health care services across coexisting medical conditions
the spectrum of cognitive impairment
Overall, 96% of Medicare beneficiaries with Alzheimer’s disease or
Health care costs increase with the presence of dementia. In a other dementias have at least one other chronic condition.599 Addi-
population-based study of adults age 70 to 89, annual health care tionally, they are more likely than those without dementia to have other
366

TA B L E 1 4 Emergency Department (ED) Visits, Hospital Readmissions and Per Capita Medicare Payments in 2020 Dollars by Medicare
Beneficiaries with Alzheimer’s or Other Dementias by State, 2018

Percentage of Percentage of
Hospital Stays Hospital Stays
Followed by Followed by
Number of ED Readmission Per Capita Number of ED Readmission Per Capita
Visits per 1,000 within 30 Medicare Visits per 1,000 within 30 Medicare
State Beneficiaries Days Payments State Beneficiaries Days Payments
Alabama 1,410.8 21.2 $24,132 Montana 1,328.6 16.6 $19,995
Alaska 1,477.6 19.3 26,424 Nebraska 1,153.6 18.7 22,573
Arizona 1,436.2 20.2 26,211 Nevada 1,711.5 25.8 36,533
Arkansas 1,530.4 21.5 23,722 New Hampshire 1,493.8 20.4 26,703
California 1,496.3 23.0 35,364 New Jersey 1,456.3 22.9 32,924
Colorado 1,424.8 18.6 24,482 New Mexico 1,563.7 20.6 24,052
Connecticut 1,635.4 22.7 30,653 New York 1,461.3 23.7 33,631
Delaware 1,577.6 21.5 28,876 North Carolina 1,683.8 21.5 24,737
District of 1,741.7 25.6 33,037 North Dakota 1,173.3 18.4 18,320
Columbia
Florida 1,551.9 23.0 30,106 Ohio 1,618.7 22.5 27,990
Georgia 1,573.2 22.5 26,188 Oklahoma 1,692.1 21.6 27,966
Hawaii 1,248.2 16.0 21,395 Oregon 1,628.4 18.7 22,804
Idaho 1,389.2 17.2 22,493 Pennsylvania 1,470.5 22.0 28,073
Illinois 1,624.1 23.4 30,339 Rhode Island 1,605.6 23.2 27,714
Indiana 1,514.2 21.3 26,852 South Carolina 1,558.2 21.7 25,470
Iowa 1,310.7 18.0 19,851 South Dakota 1,200.1 18.6 20,683
Kansas 1,406.0 19.8 24,601 Tennessee 1,548.6 21.5 25,323
Kentucky 1,735.5 23.1 26,331 Texas 1,549.1 22.1 32,510
Louisiana 1,709.9 22.1 30,452 Utah 1,194.3 16.7 23,832
Maine 1,665.3 19.7 22,946 Vermont 1,528.4 19.6 23,830
Maryland 1,524.1 24.4 31,669 Virginia 1,621.7 21.6 25,246
Massachusetts 1,668.4 24.7 33,029 Washington 1,479.2 18.6 22,949
Michigan 1,691.4 24.0 29,199 West Virginia 1,811.4 24.1 26,381
Minnesota 1,467.1 21.6 24,562 Wisconsin 1,519.9 19.9 23,317
Mississippi 1,714.8 22.1 28,344 Wyoming 1,445.9 17.4 23,151
Missouri 1,529.6 22.6 25,091 U.S. Average 1,544.8 22.3 28,777*

*The average per capita Medicare payment differs from the figure in Table 12 due to different underlying sources of data. Created from data from the
U.S. Centers for Medicare & Medicaid Services.588

chronic conditions.340 Overall, 2.8 times more Medicare beneficiaries payments for most health care services than Medicare beneficiaries
with Alzheimer’s or other dementias have four or more chronic condi- with the same medical condition but without dementia. Table 16 shows
tions (excluding Alzheimer’s disease and other dementias) than Medi- the average per-person Medicare payments for seven specific med-
care beneficiaries without dementia.340 Table 15 reports the percent- ical conditions among beneficiaries who have Alzheimer’s or other
age of people with Alzheimer’s or other dementias who had certain dementias and beneficiaries who do not have Alzheimer’s or another
coexisting medical conditions. In 2014, the latest year for which infor- dementia.340 Medicare beneficiaries with Alzheimer’s or other demen-
mation is available, 38% of Medicare beneficiaries age 65 and older tias have higher average per-person payments in all categories except
with dementia also had coronary artery disease, 37% had diabetes, hospital care payments for individuals with congestive heart fail-
29% had chronic kidney disease, 28% had congestive heart failure and ure. One group of researchers found that individuals with dementia
25% had chronic obstructive pulmonary disease.340 and behavioral disturbances, such as agitation, had more psychiatric
Medicare beneficiaries who have Alzheimer’s or other dementias comorbidities than individuals with dementia but without behavioral
and a coexisting medical condition have higher average per-person disturbances.600 Additionally, larger proportions of individuals with
 367

TA B L E 1 5 Percentage of Medicare Beneficiaries Age 65 and vided either low- or moderate-level medical services than in centers
Older with Alzheimer’s or Other Dementias Who Have Specified that either provided no medical services or mainly provided health
Coexisting Conditions
or medical services.602
Coexisting Condition Percentage ∙ Residential care facilities. Forty-two percent of residents in res-
Coronary artery disease 38 idential care facilities (that is, housing that includes services to

Diabetes 37 assist with everyday activities, such as medication management and

meals), including assisted living facilities, have Alzheimer’s or other
Chronic kidney disease 29
dementias.601 Sixty-one percent of residential care communities are
Congestive heart failure 28
small (four to 25 beds),603 and these facilities have a larger propor-
Chronic obstructive pulmonary disease 25
tion of residents with Alzheimer’s or other dementias than facili-
Stroke 22 ties with more beds (51% in facilities with four to 25 beds com-
Cancer 13 pared with 44% in facilities with 26 to 50 beds and 39% in facili-
Created from unpublished data from the National 5% Sample Medicare ties with more than 50 beds).604 Fifty-eight percent of residential
Fee-for-Service Beneficiaries for 2014.340 care facilities offer programs for residents with Alzheimer’s or other
dementias.605 Average aide staff hours per resident day in residen-
tial care communities range from 2 hours and 11 minutes per day in
dementia and behavioral disturbances used medications including anti- facilities with less than 25% of residents diagnosed with dementia to
hypertensives, dementia treatments, antipsychotics, antidepressants, 2 hours and 44 minutes per day in facilities with more than 75% of
antiepileptics and hypnotics. residents diagnosed with dementia.603
∙ Nursing home care. Overall, 48% of nursing home residents have
6.3 Use and costs of long-term care services Alzheimer’s or other dementias,601 while 37% of short-stay (less
than 100 days) nursing home residents have Alzheimer’s or other
An estimated 70% of older adults with Alzheimer’s or other demen- dementias, and 59% of long-stay (100 days or longer) residents
tias live in the community, compared with 98% of older adults without have these conditions. In 2014, 61% of nursing home residents
Alzheimer’s or other dementias.240 Of those with dementia who live with Alzheimer’s or other dementias had moderate or severe cog-
in the community, 74% live with someone and the remaining 26% live nitive impairment.606 Ten percent of Medicare beneficiaries with
alone.240 As their disease progresses, people with Alzheimer’s or other Alzheimer’s or other dementias reside in a nursing home, compared
dementias generally receive more care from family members and other with 1% of Medicare beneficiaries without the condition.240 One
unpaid caregivers. Many people with dementia also receive paid ser- group of researchers has estimated that approximately 75% of sur-
vices at home; in adult day centers, assisted living facilities or nursing viving Alzheimer’s disease patients diagnosed at age 70 will reside
homes; or in more than one of these settings at different times during in a nursing home by age 80, compared with only 4% of the general
the often long course of the disease. Medicaid is the only public pro- population surviving to age 80.342
gram that covers the long nursing home stays that most people with ∙ Alzheimer’s special care units and dedicated facilities. An
dementia require in the severe stage of their illnesses. Alzheimer’s special care unit is a dedicated unit, wing or floor
in a nursing home or other residential care facility that has tailored
services for individuals with Alzheimer’s or other dementias. Fifteen
6.3.1 Use of long-term care services by setting percent of nursing homes and 14% of other residential care facilities
have a dementia special care unit,601 even though 72% of Medicare
Most people with Alzheimer’s or other dementias who live at home beneficiaries with Alzheimer’s dementia have a nursing home stay
receive unpaid help from family members and friends, but some also in the last 90 days of life.607 Additionally, 9% of residential care
receive paid home- and community-based services, such as personal facilities exclusively provide care to individuals with dementia, while
care and adult day care. People with Alzheimer’s or other dementias less than 1% (0.4%) of nursing homes exclusively provide care to
make up a large proportion of all older adults who receive adult day ser- individuals with dementia.
vices and nursing home care.
Long-term care services provided at home and in the community
∙ Home health services. Thirty-two percent of individuals using home Nationally, state Medicaid programs are shifting long-term care ser-
health services have Alzheimer’s or other dementias.601 vices from institutional care to home- and community-based ser-
∙ Adult day services. Thirty-one percent of individuals using adult vices as a means to both reduce unnecessary costs and meet the
day services have Alzheimer’s or other dementias, and approxi- growing demand for these services by older adults. The federal and
mately 10% of adult day services centers in the United States spe- state governments share the management and funding of the pro-
cialize in caring for individuals with Alzheimer’s disease or other gram, and states differ greatly in the services covered by their Med-
dementias.602 The percentage of participants with Alzheimer’s or icaid programs. In 2016, home- and community-based services rep-
other dementias was higher in adult day services centers that pro- resented the majority (57%) of Medicaid spending on long-term
368

TA B L E 1 6 Average Annual Per-Person Payments by Type of Services and Coexisting Medical Condition for Medicare Beneficiaries Age 65 and
Older, with and without Alzheimer’s or Other Dementias, in 2020 Dollars*

Medical Condition by Total Medicare Hospital Physician Skilled Nursing Home Hospice
Alzheimer’s/Dementia (A/D) Status Payments Care Care Home Care Health Care Care
Coronary artery disease
With A/D $29,414 $8,997 $2,273 $4,961 $2,670 $3,276
Without A/D 18,358 6,480 1,617 1.594 1,107 426
Diabetes
With A/D 28,474 8,561 2,225 4,798 2,583 2,950
Without A/D 15,719 5,363 1,426 1,386 961 290
Congestive heart failure
With A/D 32,275 10,111 2,387 5,423 2,796 3,933
Without A/D 27,382 10,265 2,144 2,936 1,985 919
Chronic kidney disease
With A/D 31,410 9,689 2,330 5,278 2,642 3,503
Without A/D 22,520 8,008 1,838 2,130 1,368 539
Chronic obstructive pulmonary disease
With A/D 31,179 9,717 2,359 5,230 2,733 3,633
Without A/D 21,270 7,782 1,783 1,978 1,368 686
Stroke
With A/D 29,846 8,880 2,250 5,163 2,568 3,644
Without A/D 21,501 7,224 1,812 2,595 1,657 689
Cancer
With A/D 28,275 8,423 2,179 4,450 2,362 3,260
Without A/D 17,933 5,537 1,495 1,188 788 552

*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 2014.340

services and supports, with institutional care representing the remain- found that individuals discharged from a nursing facility were nearly
ing 43%.608 Between 2013 and 2016, Medicaid spending on home- equally as likely to be discharged home (39%) as discharged to a hos-
and community-based services increased 26% overall, while spending pital (44%).612 Individuals with dementia may also transition between
on institutional care increased only 1.5%. Additionally, total spending a nursing facility and hospital or between a nursing facility, home and
on home care for Medicare beneficiaries with Alzheimer’s or other hospital, creating challenges for caregivers and providers to ensure
dementias nearly doubled between 2004 and 2011, although increases that care is coordinated across settings. Other researchers have shown
in spending may be due to a variety of factors, including more peo- that nursing home residents frequently have burdensome transitions
ple being diagnosed with Alzheimer’s dementia, more people using at the end of life, including admission to an intensive care unit in
home care, an increase in the number of coexisting medical condi- the last month of life and late enrollment in hospice.613 The number
tions, more intensive use of home care services and an increase in of care transitions for nursing home residents with advanced cogni-
Medicaid coverage by older adults.240,609 In two recent systematic tive impairment varies substantially across geographic regions of the
reviews of the cost-effectiveness of home support interventions for United States.614
individuals with dementia, researchers found some evidence to sup-
port occupational therapy, home-based exercise and some psychologi-
cal and behavioral treatments as potentially cost-effective approaches, 6.3.2 Costs of long-term care services
although the research that has evaluated both the costs and benefits of
home support interventions is scant.610,611 Long-term care services include home- and community-based services,
assisted living and nursing home care. The following estimates are for
Transitions between care settings all users of these services.
Individuals with dementia often move between a nursing facility, hos-
pital and home, rather than remaining solely in a nursing facility. In a ∙ Home care. The median cost in 2020 for a paid non-medical home
longitudinal study of primary care patients with dementia, researchers health aide is $24 per hour and $4,576 per month.615 Home
 369

care costs increased 3.7% annually on average over the past five concentrated and has consolidated since 2000. In 2000, 41% of individ-
years. uals with a long-term care policy were insured by one of the five largest
∙ Adult day centers. The median cost of adult day services is $74 per insurers versus 56% in 2014.619
day.615 The cost of adult day services has increased 1.5% annually on To address the dearth of private long-term care insurance options
average over the past five years. and high out-of-pocket cost of long-term care services, Washington
∙ Assisted living facilities. The median cost for care in an assisted liv- became the first state in the country to pass a law that will create a
ing facility is $4,300 per month, or $51,600 per year.615 The cost of public state-operated long-term care insurance program.621 The Long-
assisted living has increased 3.6% annually on average over the past Term Services and Supports Trust Program will be funded by a payroll
five years. tax on employees of 58 cents per $100 earned that begins in 2022, and
∙ Nursing homes. The average cost for a private room in a nursing self-employed individuals will be able to opt into the program. The pro-
home is $290 per day, or $105,850 per year, and the average cost gram is currently structured to pay up to $36,500 in lifetime benefits,
of a semi-private room is $255 per day, or $93,075 per year.615 The beginning in 2025.
cost of nursing home care has increased 3% annually on average over
the past five years for both private and semi-private rooms. Medicare does not cover long-term care in a nursing home
Although Medicare covers care in a long-term care hospital, skilled
Affordability of long-term care services nursing care in a skilled nursing home, and hospice care, long-term care
Few individuals with Alzheimer’s or other dementias have sufficient in a nursing home is not covered by Medicare.622
long-term care insurance or can afford to pay out of pocket for long- The terms “nursing home,” “skilled nursing facility,” and “long-term
term care services for as long as the services are needed. care hospital” are often confused. Additionally, results from the 2016
Alzheimer’s Association Family Impact of Alzheimer’s Survey revealed
∙ Medicare beneficiaries with a dementia diagnosis have lower house- that 28% of adults believed Medicare covered the cost of nursing home
hold incomes on average than beneficiaries without a dementia diag- care for people with Alzheimer’s, and 37% did not know whether it
nosis. In 2018, 23% of community-dwelling Medicare beneficiaries covered the cost of nursing home care.411 These findings suggest that
with a dementia diagnosis had household incomes below the fed- Medicare beneficiaries and caregivers need more education and infor-
eral poverty level and 53% had household incomes between 100% mation about the types of services that Medicare covers.
and 200% of the federal poverty level, while 15% of those with- Medicare does not cover custodial care, that is, care to assist with
out a dementia diagnosis lived below the federal poverty level and activities of daily living, such as dressing and bathing. Most nurs-
40% had household incomes between 100% and 200% of the federal ing home care is custodial care, and therefore is not covered by
poverty level.616 Medicare.
∙ Asset data are not available for people with Alzheimer’s or other Medicare does cover skilled nursing care, or nursing and therapy
dementias specifically, but 50% of Medicare beneficiaries age 65 and care that must be performed or supervised by medical profession-
older had total savings of $83,850 or less in 2019 dollars ($84,740 in als, such as registered or licensed nurses.591 For Medicare to cover
2020 dollars) and 25% had savings of $9,650 or less in 2019 dollars skilled nursing care, the Medicare beneficiary must have a qualifying
($9,752 in 2020 dollars). Median savings for White Medicare benefi- hospital stay, a physician must decide that skilled care is needed, and
ciaries were 8.5 times higher than for Blacks and more than 15 times the medical condition requiring skilled care must be related to the
higher than for Hispanics.617 hospitalization.623 Fee-for-service Medicare (Part A) covers the first
20 days of skilled nursing care with $0 coinsurance for each benefit
Long-term care insurance period. For the next 80 days of skilled nursing care (days 21-100), the
Long-term care insurance typically covers the cost of care provided in a beneficiary pays $185.50 per day in coinsurance.
nursing home, assisted living facility and Alzheimer’s special care facil- A long-term care hospital is an acute care hospital that specializes in
ity, as well as community-based services such as adult day care and ser- caring for people who stay more than 25 days, on average. A long-term
vices provided in the home, including nursing care and help with per- care hospital provides specialized care, such as respiratory therapy,
sonal care.618 pain management and treatment for head trauma.624 Benefits work in
Industry reports estimate that approximately 7.2 million Americans the same way that Medicare covers other acute care hospitalizations.
had long-term care insurance in 2014.619 The median income for indi- The terms “Medicare” and “Medicaid” are also often confused. Most
viduals purchasing long-term care insurance was $87,500 in 2010 dol- individuals who are age 65 or older, have a permanent disability or
lars ($103,665 in 2020 dollars), with 77% having an annual income have end-stage renal disease qualify for Medicare Part A, which is also
greater than $50,000 ($59,237 in 2020 dollars) and 82% having assets referred to as hospital insurance.625 Individuals are eligible to receive
greater than $75,000 ($88,856 in 2020 dollars).619 Private health care Medicare Part A at no cost if they have worked and paid Medicare taxes
and long-term care insurance policies funded only about 8% of total for at least 10 years (i.e., have a sufficient earnings history) or a spouse,
long-term care spending in 2013, representing $24.8 billion of the parent or child has a sufficient earnings history. Medicare Part B
$310 billion total in 2013 dollars ($27.5 billion of the $344 billion in (medical insurance) is a voluntary program that requires enrollees to
2020 dollars).620 The private long-term care insurance market is highly pay a monthly premium. Medicare Advantage Plans, also referred to
370

as Medicare Part C, are becoming more common, with more than one- 6.3.3 Use and costs of care at the end of life
third of Medicare beneficiaries enrolled in this type of plan in 2020.626
Medicare Advantage Plans are privately offered Medicare plans that Hospice care provides medical care, pain management, and emotional
combine Medicare Parts A and B and often also include prescription and spiritual support for people who are dying, including people with
drug coverage (Medicare Part D).627 Alzheimer’s or other dementias, either in a facility or at home. Hos-
While Medicare is a federal program, Medicaid is a joint federal and pice care also provides emotional and spiritual support and bereave-
state program, and benefits vary state-to-state.628 Individuals with low ment services for families of people who are dying. The main purpose
incomes and/or low resources may qualify for coverage. Medicaid cov- of hospice is to allow individuals to die with dignity and without pain
ers some services that Medicare either does not cover or only partially and other distressing symptoms that often accompany terminal illness.
covers, such as nursing home care and home- and community-based Medicare is the primary source of payment for hospice care, but private
care. Individuals who are enrolled in both Medicare and Medicaid are insurance, Medicaid and other sources also pay for hospice care. Medi-
sometimes referred to as “dual eligibles.” care beneficiaries enrolled in Medicare Part A (i.e., Medicare’s hospital
For more information about Medicare, visit medicare.gov. For insurance) can choose to enroll in Medicare’s hospice benefit if a hos-
more information about Medicaid, visit healthcare.gov/medicaid- pice physician certifies that the individual is terminally ill (i.e., expected
chip/getting-medicaid-chip/. to live six months or less), and the individual accepts palliative or com-
fort care and forgoes curative care for the terminal illness, so that hos-
Medicaid costs pice care replaces other Medicare-covered benefits for treating the
Medicaid covers nursing home care and long-term care services in the terminal illness and related conditions.629
community for individuals who meet program requirements for level of Nineteen percent of Medicare beneficiaries with Alzheimer’s and
care, income and assets. To receive coverage, beneficiaries must have other dementias have at least one hospice claim annually compared
low incomes. Most nursing home residents who qualify for Medicaid with 2% of Medicare beneficiaries without Alzheimer’s or other
must spend all of their Social Security income and any other monthly dementias.340 Expansion of hospice care is associated with fewer indi-
income, except for a very small personal needs allowance, to pay for viduals with dementia having more than two hospitalizations for any
nursing home care. Medicaid only makes up the difference if the nurs- reason or more than one hospitalization for pneumonia, urinary tract
ing home resident cannot pay the full cost of care or has a financially infection, dehydration or sepsis in the last 90 days of life.630 In 2017,
dependent spouse. Although Medicaid covers the cost of nursing home 4,254 U.S. companies provided hospice care in the home, assisted liv-
care, its coverage of many long-term care and support services, such as ing communities, long-term care residences, inpatient hospitals, and
assisted living care, home-based skilled nursing care and help with per- inpatient hospice and other settings.631 Additionally, 18% of Medicare
sonal care, varies by state. beneficiaries who received hospice care had a primary diagnosis of
Twenty-seven percent of older individuals with Alzheimer’s or dementia, including Alzheimer’s dementia (Table 18).631 Dementia was
other dementias who have Medicare also have Medicaid coverage, the second most common primary diagnosis for Medicare beneficiaries
compared with 11% of individuals without dementia.240 Medicaid admitted to hospice overall, with cancer being the most common pri-
pays for nursing home and other long-term care services for some mary diagnosis. Forty-five percent of hospice users in 2015 had a diag-
people with very low income and low assets, and the high use of nosis of Alzheimer’s or other dementias, suggesting that a large pro-
these services by people with dementia translates into high costs portion of hospice users have Alzheimer’s as a comorbid condition.601
to Medicaid. Average annual Medicaid payments per person for The average number of days with hospice care for individuals with a
Medicare beneficiaries with Alzheimer’s or other dementias ($9,178) primary diagnosis of dementia was more than 50% higher than for indi-
were 23 times as great as average Medicaid payments for Medi- viduals with other primary diagnoses, based on data from the 2008 to
care beneficiaries without Alzheimer’s or other dementias ($391) 2011 National Hospice Survey.632 Individuals with a primary diagno-
(Table 12).240 Much of the difference in payments for beneficiaries sis of dementia use an average of 112 days versus 74 days for individu-
with Alzheimer’s or other dementias and other beneficiaries is due to als with other primary diagnoses. Researchers have found that patients
the costs associated with long-term care (nursing homes and other with dementia are more likely to be disenrolled from hospice after a
residential care facilities, such as assisted living facilities) and the long hospice stay (more than 165 days in hospice) than patients with
greater percentage of people with dementia who are eligible for other primary diagnoses,632 due to admission to an acute care hospital
Medicaid. and loss of eligibility because the individual was no longer terminally ill
Total Medicaid spending for people with Alzheimer’s or other or failed to recertify for hospice.633
dementias is projected to be $59 billion in 2021 (in 2021 dol- Per-person hospice payments among all individuals with
lars).A11 Estimated state-by-state Medicaid spending for people with Alzheimer’s dementia averaged $2,240 compared with $170 for
Alzheimer’s or other dementias in 2020 (in 2020 dollars) is included all other Medicare beneficiaries.240 In 2016, Medicare reimbursement
in Table 17. Total per-person Medicaid payments for Medicare ben- for home hospice services changed from a simple daily rate for each
eficiaries age 65 and older with Alzheimer’s or other dementias setting to a two-tiered approach that provides higher reimbursement
were 23 times as great as Medicaid payments for other Medicare for days 1 to 60 than for subsequent days and a service intensity add-
beneficiaries.240 on payment for home visits by a registered nurse or social worker in the
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TA B L E 1 7 Total Medicaid Payments for Americans Age 65 and Older Living with Alzheimer’s or Other Dementias by State*

2020 2025 2020 2025

(in millions (in millions Percentage (in millions (in millions Percentage
State of dollars) of dollars) Increase State of dollars) of dollars) Increase
Alabama $925 $1,127 21.8 Montana $166 $203 22.2
Alaska 76 110 44.6 Nebraska 372 411 10.3
Arizona 414 545 31.7 Nevada 203 277 36.5
Arkansas 396 454 14.6 New Hampshire 254 335 31.9
California 4,197 5,235 24.7 New Jersey 2,186 2,614 19.6
Colorado 635 789 24.1 New Mexico 227 279 22.9
Connecticut 1,022 1,189 16.1 New York 5,453 6,306 15.6
Delware 253 313 23.6 North Carolina 1,332 1,628 22.2
District of Columbia 126 135 6.8 North Dakota 190 215 13.2
Florida 2,689 3,453 28.4 Ohio 2,534 2,940 16.0
Georgia 1,256 1,594 26.0 Oklahoma 516 611 18.3
Hawaii 240 285 18.7 Oregon 253 317 25.4
Idaho 149 196 31.2 Pennsylvania 3,658 4,029 10.2
Illinois 1,787 2,199 23.1 Rhode Island 470 565 20.1
Indiana 1,054 1,233 17.1 South Carolina 652 818 25.4
Iowa 676 792 17.2 South Dakota 182 212 16.6
Kansas 473 543 14.6 Tennessee 1,109 1,377 24.2
Kentucky 803 949 18.2 Texas 3,202 3,949 23.3
Louisiana 765 934 22.1 Utah 185 235 27.0
Maine 212 274 29.5 Vermont 116 146 26.4
Maryland 1,231 1,535 24.7 Virginia 1,000 1,266 26.6
Massachusetts 1,753 2,031 15.9 Washington 547 689 26.0
Michigan 1,487 1,738 16.9 West Virginia 445 521 17.1
Minnesota 905 1,087 20.1 Wisconsin 777 924 18.9
Mississippi 606 729 20.4 Wyoming 86 111 28.8
Missouri 973 1,137 16.8 U.S. Average 51,226 61,581 20.2

*All cost figures are reported in 2020 dollars. State totals may not add to the U.S. total due to rounding.
Created from data from the Lewin Model.411

last seven days of life. In fiscal year 2020, the routine home care rates than for families of individuals with dementia not enrolled in hospice
were $199.25 per day for days 1 to 60 and $157.49 per day for days 61 care.639
and beyond.634 In a simulation to evaluate whether the reimbursement Based on data from the National Hospice Survey for 2008 to
change will reduce costs for Medicare, a group of researchers found 2011, nearly all (99%) hospices cared for individuals with dementia,
that the new reimbursement approach is anticipated to reduce costs although only 67% of hospices had residents with a primary diagno-
for Medicare, although individuals with dementia who receive hospice sis of dementia.632 Fifty-two percent of individuals in for-profit hos-
care will have higher Medicare spending overall than individuals with pices had either a primary or comorbid diagnosis of dementia, while
dementia who do not receive hospice care.635 41% of individuals in nonprofit hospices had a diagnosis of dementia.
For Medicare beneficiaries with advanced dementia who receive More research is needed to understand the underlying reasons for the
skilled nursing home care in the last 90 days of life, those who are differences in the percentage of people with dementia in for-profit ver-
enrolled in hospice are less likely to die in the hospital.636 Addition- sus nonprofit hospices.
ally, those enrolled in hospice care are less likely to be hospitalized Researchers have found similar reductions in hospitalizations at the
in the last 30 days of life637 and more likely to receive regular treat- end of life for individuals receiving palliative care. For nursing home
ment for pain.638 Nearly half of individuals with dementia die while residents with moderate-to-severe dementia, those who received
receiving hospice care.607 Satisfaction with medical care is higher for an initial palliative care consultation between one and six months
families of individuals with dementia who are enrolled in hospice care before death had significantly fewer hospitalizations and emergency
372

TA B L E 1 8 Number and Percentage of Medicare Beneficiaries Admitted to Hospice with a Primary Diagnosis of Dementia by State, 2017

Number of Percentage of Number of Percentage of

State Beneficiaries Beneficiaries State Beneficiaries Beneficiaries
Alabama 5,867 18 Montana 507 11
Alaska 95 14 Nebraska 1,648 18
Arizona 7,229 18 Nevada 2,167 17
Arkansas 3,133 18 New Hampshire 1,007 17
California 30,045 20 New Jersey 8,207 23
Colorado 3,254 15 New Mexico 1,523 15
Connecticut 2,380 15 New York 7,669 16
Delaware 716 12 North Carolina 8,486 17
District of Columbia 263 18 North Dakota 468 18
Florida 19,897 15 Ohio 12,656 17
Georgia 10,435 21 Oklahoma 4,102 18
Hawaii 943 16 Oregon 3,565 17
Idaho 1,566 17 Pennsylvania 12,384 17
Illinois 9,795 18 Rhode Island 1,657 25
Indiana 5,922 17 South Carolina 6,038 20
Iowa 3,278 17 South Dakota 421 13
Kansas 2,770 18 Tennessee 6,435 19
Kentucky 2,895 15 Texas 26,672 22
Louisiana 4,786 19 Utah 2,506 19
Maine 1,494 19 Vermont 543 17
Maryland 4,072 17 Virginia 6,440 19
Massachusetts 7,245 23 Washington 5,459 20
Michigan 9,001 16 West Virginia 1,552 15
Minnesota 5,399 21 Wisconsin 5,086 16
Mississippi 3,547 20 Wyoming 89 7
Missouri 5,991 17 U.S. Total 278,192 18

Created from data from the U.S. Centers for Medicare & Medicaid Services.631

department visits in the last seven and 30 days of life, compared with 90 days of life has decreased for individuals with Alzheimer’s or other
those who did not receive palliative care.640 Patients with an initial dementias.630 Finally, with the increased focus on the lack of evidence
palliative care consultation within one month of death also had signif- supporting feeding tube use for people with advanced dementia, the
icantly fewer hospitalizations in the last seven days of life compared proportion of nursing home residents receiving a feeding tube in the
with those who did not receive palliative care.640 12 months before death decreased from nearly 12% in 2000 to less
than 6% in 2014.642
Feeding tube use at the end of life
Place of death for individuals with Alzheimer’s or other dementias
Individuals with frequent transitions between health care settings are
Between 1999 and 2018, the proportion of individuals with
more likely to have feeding tubes at the end of life, even though feed-
Alzheimer’s who died in a nursing home decreased from 68% to
ing tube placement does not prolong life or improve outcomes.585
51%, and the proportion who died in a medical facility decreased from
The odds of having a feeding tube inserted at the end of life vary
15% to 5%.643 During the same period, the proportion of individuals
across the country and are not explained by severity of illness, restric-
who died at home increased from 14% to 28% (Figure 16).643
tions on the use of artificial hydration and nutrition, ethnicity or gen-
der. Researchers found that feeding tube use was highest for peo-
ple with dementia whose care was managed by a subspecialist physi- 6.4 Use and costs of health care and long-term
cian or both a subspecialist and a general practitioner. By contrast, care services by race/ethnicity
feeding tube use was lower among people with dementia whose care
was managed by a general practitioner.641,642 With the expansion of Among Medicare beneficiaries with Alzheimer’s or other dementias,
Medicare-supported hospice care, the use of feeding tubes in the last Blacks had the highest Medicare payments per person per year, while
 373

FIGURE 16 Place of death due to Alzheimer’s disease, 1999 to 2018. Created from data from the National Center for Health Statistics.643

TA B L E 1 9 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 2020 Dollars

Total Medicare Hospital Physician Skilled Home Health Hospice

Race/Ethnicity Payments Per Person Care Care Nursing Care Care Care
White $22,135 $5,915 $1,665 $3,809 $1,931 $3,563
Black 29,934 9,957 2,258 4,721 2,360 2,638
Hispanic 23,725 8,004 1,963 3,629 2,035 1,964
Other 28,799 9,003 2,208 3,802 4,182 2,904

Created from unpublished data from the National 5% Sample Medicare Fee-for-Service Beneficiaries for 2014.340

Whites had the lowest payments ($29,934 versus $22,135, respec- 6.5 Avoidable use of health care and long-term
tively) (Table 19). The largest difference in payments was for hospital care services
care, with Blacks incurring 1.7 times as much in hospital care costs as
Whites ($9,957 versus $5,915).340 6.5.1 Preventable hospitalizations
In a study of Medicaid beneficiaries with a diagnosis of Alzheimer’s
dementia that included both Medicaid and Medicare claims data, Preventable hospitalizations are one common measure of health care
researchers found significant differences in the costs of care by quality. Preventable hospitalizations are hospitalizations for condi-
race/ethnicity.644 These results demonstrated that Blacks had sig- tions that could have been avoided with better access to, or qual-
nificantly higher costs of care than Whites or Hispanics, primarily ity of, preventive and primary care. Unplanned hospital readmissions
due to more inpatient care and more comorbidities. These differ- within 30 days are another type of hospitalization that potentially
ences may be attributable to later-stage diagnosis, which may lead could have been avoided with appropriate post-discharge care. In
to higher levels of disability while receiving care; delays in access- 2013, 21% of hospitalizations for fee-for-service Medicare enrollees
ing timely primary care; lack of care coordination; duplication of ser- with Alzheimer’s or other dementias were either for unplanned read-
vices across providers; or inequities in access to care. However, more missions within 30 days or for an ambulatory care sensitive condition
research is needed to understand the reasons for this health care (a condition that was potentially avoidable with timely and effective
disparity. ambulatory — that is, outpatient — care). The total cost to Medicare of
374

F I G U R E 1 7 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. Created from unpublished data from the National 5% Sample Medicare Fee-for-Service Beneficiaries for
2014.340

these potentially preventable hospitalizations was $4.7 billion (in 2013 the same coexisting medical condition but without dementia (Fig-
dollars; $5.7 billion in 2020 dollars).645 Of people with dementia who ure 17).340 One research team found that individuals hospitalized with
had at least one hospitalization, 18% were readmitted within 30 days, heart failure are more likely to be readmitted or die after hospital dis-
and of those who were readmitted within 30 days, 27% were readmit- charge if they also have cognitive impairment.649 Another research
ted two or more times. Ten percent of Medicare enrollees had at least team found that Medicare beneficiaries with Alzheimer’s or other
one hospitalization for an ambulatory care sensitive condition, and dementias have more potentially avoidable hospitalizations for dia-
14% of total hospitalizations for Medicare enrollees with Alzheimer’s betes complications and hypertension, meaning that the hospitaliza-
or other dementias were for ambulatory care-sensitive conditions. tions could possibly be prevented through proactive care management
Based on Medicare administrative data from 2013 to 2015, pre- in the outpatient setting.650 A third research team found that having
ventable hospitalizations represented 23.5% of total hospitalizations depression, rheumatoid arthritis or osteoarthritis was associated with
for individuals with Alzheimer’s or other dementias.646 Black older higher emergency department use in Medicare beneficiaries with pos-
adults had a substantially higher proportion of preventable hospitaliza- sible or probable dementia and two more chronic conditions.651
tions (31%) compared with Hispanic and White older adults (22% for Differences in health care use between individuals with and with-
each group). out dementia are most prominent for those residing in the commu-
Based on data from the Health and Retirement Study and from nity. Based on data from the Health and Retirement Study, community-
Medicare, after controlling for demographic, clinical and health risk residing individuals with dementia were more likely to have a poten-
factors, individuals with dementia had a 30% greater risk of having tially preventable hospitalization, an emergency department visit that
a preventable hospitalization than those without a neuropsychiatric was potentially avoidable, and/or an emergency department visit that
disorder (that is, dementia, depression or cognitive impairment with- resulted in a hospitalization.652 For individuals residing in a nursing
out dementia). Moreover, individuals with both dementia and depres- home, there were no differences in the likelihood of being hospitalized
sion had a 70% greater risk of preventable hospitalization than those or having an emergency department visit.
without a neuropsychiatric disorder.647 Another group of researchers
found that individuals with dementia and a caregiver with depression
had 73% higher rates of emergency department use over six months 6.5.2 Initiatives to reduce avoidable health care
than individuals with dementia and a caregiver who did not have and nursing home use
depression.648
Medicare beneficiaries who have Alzheimer’s or other dementias Recent research has demonstrated that two types of programs have
and a serious coexisting medical condition (for example, congestive potential for reducing avoidable health care and nursing home use,
heart failure) are more likely to be hospitalized than people with with one type of program focusing on the caregiver and the other
 375

focusing on the care delivery team. The Caregiving section describes individuals enrolled in the program had 9.4 fewer emergency depart-
a number of interventions to support caregivers, and some of these ment visits and 160.1 fewer hospital days per 1,000 participants per
also hold promise for reducing residential care admissions for indi- quarter,656 and were less likely to have a long-term care nursing home
viduals with Alzheimer’s or other dementias. Additionally, collabora- admission over three years,657 although there was no difference in hos-
tive care models — models that include not only geriatricians, but pital admissions.656 Additionally, the program saved $284 per person
also social workers, nurses and medical assistants, for example — can per quarter in 2013 dollars ($346 in 2020 dollars) after taking into
improve care coordination, thereby reducing health care costs asso- account program costs that included clinician and staff time, payments
ciated with hospitalizations, emergency department visits and other to community-based organizations, supplies and other costs.657 More
outpatient visits.545 For example, an interprofessional memory care clinical trials and comparative studies are needed to identify promising
clinic was shown to reduce per-person health care costs by $3,474 interventions aimed at reducing hospital and nursing home admissions.
in 2012 dollars ($4,342 in 2020 dollars) over a year for individuals
with memory problems compared with others with memory problems
whose care was overseen by a primary care provider only.545 More 6.6 Projections for the future
than half of the cost savings was attributed to lower inpatient hos-
pital costs. The program was relatively low cost per person, with an Total annual payments for health care, long-term care and hospice
average annual cost of $618 ($695 in 2020 dollars) — a nearly 6-to- care for people with Alzheimer’s or other dementias are projected
1 return on investment. Another group of researchers found that a to increase from $355 billion in 2021 to more than $1.1 trillion in
telephone- and internet-based dementia care delivery system reduced 2050 (in 2021 dollars). This dramatic rise includes more than three-fold
emergency department visits over 12 months, although they found increases both in government spending under Medicare and Medicaid
no effect on the number of hospitalizations or use of ambulance and in out-of-pocket spending.A11
services.541
Researchers of two recent systematic reviews, however, have found
little evidence to support health services interventions successfully 6.6.1 Potential impact of changing the trajectory
reducing acute hospitalizations or emergency department visits. One of Alzheimer’s disease
group of researchers who conducted a recent systematic review and
meta-analysis of 17 randomized controlled trials from seven coun- While there are currently no FDA-approved pharmacologic treatments
tries aimed at reducing avoidable acute hospital care by community- that prevent or cure Alzheimer’s disease or slow its progression, sev-
dwelling individuals with dementia found that none of the interven- eral groups of researchers have estimated the cost savings of future
tions reduced acute hospital use, such as emergency department vis- interventions that either slow the onset of dementia or reduce the
its, hospital admissions, or hospital days.653 In another systematic symptoms.363,658–660 One group of researchers estimated that a treat-
review and meta-analysis that included some of the same studies, ment introduced in 2025 that delays the onset of Alzheimer’s by five
researchers also found no evidence that non-pharmacological inter- years would reduce total health care payments by 33% and out-of-
ventions reduced hospital admission for community-dwelling individ- pocket payments by 44% in 2050.658 A second group of researchers
uals with dementia.654 However, in an observational study of Medi- estimated the cost savings of delaying the onset of Alzheimer’s disease
care beneficiaries, a group of researchers found that individuals with by one to five years. For individuals age 70 and older, they projected
dementia whose care was concentrated within a smaller number of a one-year delay would reduce total health care payments by 14%
clinicians had fewer hospitalizations and emergency department vis- in 2050, a three-year delay would reduce total health care payments
its and lower health care spending overall compared with individu- by 27%, and a five-year delay would reduce health care payments by
als whose care was dispersed across a larger number of clinicians.655 39%.659 They also projected that a delay in onset may increase per
More research is needed to understand whether continuity of care is capita health care payments through the end of life due to longer life,
a strategy for decreasing unnecessary health care use for people with although the additional health care costs may be offset by lower infor-
Alzheimer’s or other dementias. mal care costs. A third group of researchers estimated that a treatment
There is also some evidence that community care coordination that slows the rate of functional decline by 10% would reduce average
reduces nursing home admission. In a systematic review and meta- per-person lifetime costs by $3,880 in 2015 dollars ($4,504 in 2020
analysis of non-pharmacologic interventions aimed at reducing hos- dollars), while a treatment that reduces the number of behavioral and
pital or nursing home admissions for community-dwelling individuals psychological symptoms by 10% would reduce average per-person life-
with dementia, researchers found that community care coordination time costs by $680 ($789 in 2020 dollars).363
reduced nursing home admission, based on the findings of two random- The Alzheimer’s Association commissioned a study of the poten-
ized trials.654 The researchers also found, however, that other types tial cost savings of early diagnosis,660 assuming that 88% of individ-
of single interventions, including exercise, psychosocial support and uals who will develop Alzheimer’s disease would be diagnosed in the
health professional training, and multifactorial assessment and treat- MCI phase rather than the dementia phase or not at all. Approxi-
ment had no effect on nursing home admissions.654 In a retrospec- mately $7 trillion could be saved in medical and long-term care costs for
tive case-controlled study of a dementia care program that used nurse individuals who were alive in 2018 and will develop Alzheimer’s dis-
practitioners and physicians to co-manage individuals with dementia, ease. Cost savings were due to a smaller spike in costs immediately
376

before and after diagnosis due to (1) the diagnosis being made during than Whites to report a range of health conditions, including asthma
the MCI phase rather than the dementia phase, which has higher costs, and diabetes. Native Americans also have higher rates of heart disease
and (2) lower medical and long-term care costs for individuals who have compared with Whites.665
diagnosed and managed MCI and dementia compared with individuals The existence of health care disparities is similarly well documented.
with unmanaged MCI and dementia. People of color and low-income individuals have historically faced
A treatment that prevents, cures or slows the progression of the dis- greater barriers to accessing care. One reason for this is that they
ease could result in substantial savings to the U.S. health care system. are more likely to be uninsured than Whites and people with higher
Without changes to the structure of the health care system, however, incomes.666
access to new treatments for Alzheimer’s may be severely restricted by Health and health care disparities are intertwined with social, eco-
capacity constraints. For example, one group of researchers developed nomic and environmental factors that perpetuate disadvantage. Both
a model of capacity constraints that estimated that individuals would health and health care disparities are influenced by socioeconomic
wait an average of 19 months for treatment in 2020 if a new treat- status, age, geographic location, gender, disability status and sexual
ment had been introduced by then.661 Under this model, approximately orientation.664 Race and ethnicity are also important factors contribut-
2.1 million individuals with MCI due to Alzheimer’s disease would ing to health and health care disparities.664
develop Alzheimer’s dementia between 2020 and 2040 while on wait- Health care system factors that contribute to disparity should also
ing lists for treatment. This model assumed both that the hypothetical be acknowledged. These include implicit bias on the part of health
treatment would require infusions at infusion centers and that it would care providers, as well as cultural and language barriers that impede
depend on people being evaluated with amyloid PET scans. While the patient-provider relationships.664
introduction of new treatments that prevent, cure or slow the progress Understanding how different racial and ethnic groups view, access
of Alzheimer’s could have a dramatic effect on the incidence and sever- and experience health care is critical to informing improvements to the
ity of Alzheimer’s, it is clear that their effectiveness could be limited by health care system and helping health providers care for an increas-
constraints on both health care system capacity and health insurance ingly diverse population. The need to do so is urgent. It is projected
reimbursement. that people of color will account for over half (52%) of the population
in 2050.664

7 SPECIAL REPORT: RACE, ETHNICITY AND

ALZHEIMER’S IN AMERICA 7.2 Pandemic sparks new discussions about
disparity
Despite decades of research and calls to action to ensure that health
care is accessible and equal for all regardless of gender, race, ethnicity, In 2020, the COVID-19 pandemic and social justice movements
geography, and socioeconomic status, this aim is still far from reality for sparked new conversations about endemic and long-standing health
too many Americans. and health care disparities faced by people of color, especially when
it comes to access, discrimination and trust in the health care
system.667,668 People of color were disproportionately affected by
7.1 Disparities still impacting health and health the environmental, societal and economic impact of the pandemic –
care facing greater risk of losing a job or income, being more likely to be
frontline workers with greater risk of exposure to the SARS-CoV-2
Reducing or eliminating disparity has been part of the national conver- virus that causes COVID-19, and having a higher likelihood of hous-
sation as a key goal of the U.S. Department of Health and Human Ser- ing uncertainty and food insecurity due to the pandemic.669–673 The
vices’ Healthy People initiative for more than 20 years.662,663 Yet dis- effects of these social, economic and environmental factors, known as
parity is still evident in health and health care. social determinants of health, can put a population’s current and future
While health disparities and health care disparities are often used health in jeopardy. For example, they have created stark contrasts in
interchangeably, there are important distinctions between the two COVID-19 infection rates and outcomes. Black, Native American and
terms. A health disparity exists when there is a higher burden of illness, Hispanic communities have seen COVID-19 cases, hospitalizations and
injury, disability, or mortality in one group relative to another, whereas deaths at rates greater than Whites, and these events far exceed their
a health care disparity is used to describe differences between groups in share of the U.S. population.674–677
health insurance coverage, access to and use of health care, and qual- In seeking care for COVID-19, Black Americans nationwide report
ity of health care.664 For both these disparities, the differences are not on social media and in news stories that they experienced bias and
explained by variations in health needs, patient preferences, or treat- discrimination.678,679 One study found that Hispanics were prevented
ment recommendations and are closely linked with social, economic, from accessing testing and care for COVID-19 because they lacked
and/or environmental disadvantage.664 insurance and there were shortages of interpreters in local health
The existence and adverse effects of health disparities are well doc- systems.680 Language barriers and low health literacy also contributed
umented. For example, Blacks and Native Americans are more likely to misunderstanding of COVID-19–related health information and the
 377

spread of misinformation in some Hispanic communities.680 A separate believe discrimination would be a barrier to receiving Alzheimer’s
survey found that Asian and White individuals were more knowledge- care.
able about COVID-19 than Hispanic and non-Hispanic Black individu- ∙ Half of Black Americans (50%) report they’ve experienced health
als; this difference in awareness and understanding could exacerbate care discrimination; more than 2 in 5 Native Americans (42%) and
existing disparities in health care.681 one-third of Asian Americans (34%) and Hispanic Americans (33%)
likewise report having experienced discrimination when seeking
health care.
7.3 Racial and ethnic disparities exist in ∙ Among non-White caregivers, half or more say they have faced
Alzheimer’s and dementia care discrimination when navigating health care settings for their care
recipient, with the top concern being that providers or staff do not
Racial and ethnic disparities in health and health care, such as those listen to what they are saying because of their race, color or ethnic-
observed during the pandemic, extend to dementia care. Stigma, cul- ity. This concern was especially high among Black caregivers (42%),
tural differences, awareness and understanding, and the ability to followed by Native American (31%), Asian American (30%) and
obtain a diagnosis, manage the disease, and access care and support Hispanic (28%) caregivers. Fewer than 1 in 5 White caregivers (17%)
services for dementia vary widely depending on race, ethnicity and expressed this view.
socioeconomic status. These disparities reach beyond clinical care to ∙ Two in 5 caregivers (41%) who provide unpaid care to a Black per-
include uneven representation of Black, Hispanic, Asian, and Native son say that race makes it harder for them to get excellent health
Americans in Alzheimer’s research in clinical trials. care. Nearly 1 in 3 caregivers of Hispanic people (32%) say the
As discussed in the Prevalence section, health and socioeconomic same.
disparities and systemic racism contribute to increased Alzheimer’s
and dementia risk in communities of color.85,140,217,284,287–289,292,293 People of color want health care providers who understand their unique
Older Black and Hispanic Americans are also disproportionately more experiences and backgrounds, but many doubt they would have access to
likely to have Alzheimer’s and other dementias, as well as more likely to culturally competent providers
have missed diagnoses, than older White Americans.271–277,294–296
Caregiving for individuals with Alzheimer’s or other dementias dif- ∙ An overwhelming majority of non-White Americans say it is impor-
fers between racial and ethnic groups too. These differences include tant for Alzheimer’s and dementia care providers to understand
the time spent on caregiving, cultural perceptions of the burden of their ethnic or racial background and experiences, including Native
caregiving, whether social networks provide support, and the psycho- Americans (92%), Blacks (89%), Hispanics (85%) and Asian Ameri-
logical well-being of the caregiver.384–388,390 cans (84%).
∙ But fewer than half of Black (48%) and Native Americans (47%) feel
confident there is access to providers who are culturally competent,
7.4 The state of disparity in Alzheimer’s and and only about 3 in 5 Asian Americans (63%) and Hispanics (59%)
dementia health care: Adult and caregiver surveys likewise feel confident.

To better understand racial and ethnic attitudes and experiences Black Americans lack trust in research clinical trials, and half doubt that
regarding Alzheimer’s and dementia care in the United States, the advances in Alzheimer’s treatments will be shared
Alzheimer’s Association commissioned Versta Research to conduct
surveys of (1) U.S. adults and (2) current or recent caregivers of adults ∙ Nearly two-thirds of Black Americans (62%) believe medical
age 50 or older with cognitive issues. Respondents were asked about research is biased against people of color, and Black Americans are
access to care and support services, trust in providers and the health less interested in participating in clinical trials for Alzheimer’s than
care system, participation in clinical trials and research, and caregiver all other groups surveyed.
experiences. This is the first Alzheimer’s Association survey to ask and ∙ Only half of Black Americans (53%) trust a future cure for
report the views of Asian Americans and Native Americans on these Alzheimer’s will be shared equally regardless of race, color or eth-
issues. It is also one of the few reports to investigate the experiences of nicity.
diverse caregivers.387
Knowledge, concern and stigma about Alzheimer’s varies widely across
racial and ethnic groups
7.4.1 Key findings
∙ Concern about developing Alzheimer’s is lower among Native Amer-
The Alzheimer’s Association surveys revealed: icans (25%), Blacks (35%) and Hispanics (41%), especially when com-
pared with Whites (48%).
Discrimination is a barrier to Alzheimer’s and dementia care
∙ More than one-third of Native Americans (35%) and nearly 3 in 10
∙ More than one-third of Black Americans (36%), and nearly one- Hispanics (28%) do not believe they will live long enough to develop
fifth of Hispanic Americans (18%) and Asian Americans (19%), Alzheimer’s or another dementia.
378

∙ More than half of non-White Americans believe significant loss of givers who identified as belonging to another ethnic or racial group
memory or cognitive abilities is “a normal part of aging.” (n = 10). Respondents were recruited via non-probability online pan-
∙ Hispanic, Black and Native Americans are twice as likely as Whites to els used exclusively for research, with full population screening and
say they would not see a doctor if experiencing thinking or memory respondent data weighted to match U.S. Census data on age, gender,
problems. income, education and race/ethnicity to ensure accurate representa-
∙ One in 5 Black (21%) and Hispanic Americans (20%) say they would tion of the caregiving population, and to correct for demographic over-
feel insulted if a doctor suggested a cognitive assessment. samples. The survey was offered in both English and Spanish.
∙ Hispanic and Black Americans worry less than other groups about For both surveys, differences noted in the report between racial
being a burden on family if they develop Alzheimer’s disease. and ethnic groups were tested and found to be statistically significant
∙ Nearly 2 in 3 caregivers (64%) across all groups say that caregiving is at the p < .05 level.
stressful, but nearly all (92%) say caregiving is rewarding as well.

Overall, the results of the Alzheimer’s Association surveys indicate 7.4.3 Survey results
that despite ongoing efforts to address health and health care dispari-
ties in Alzheimer’s and other dementias, there is still much work to do. Discrimination continues to be a barrier to dementia care

People of color face more challenges in accessing and receiving high The Alzheimer’s Association survey of U.S. adults found that more

quality dementia care and support services in the current environment. than one-third of Black Americans (36%) and one-fifth of Hispanic

The data suggest that discrimination and lack of diversity in the health (18%) and Asian (19%) Americans see discrimination as a barrier

care profession are significant barriers that demand attention. to receiving Alzheimer’s and dementia care (Figure 1). Specifically,
they expect to be treated differently because of their race, color or
ethnicity.
Other perceived barriers to care (Table 20) cited by survey respon-
7.4.2 Survey design and research methods
dents include affordability (especially among Asian Americans), fol-
lowed by lack of good health insurance coverage, lack of good local
Surveys across both groups explored wide-ranging issues related to
health care (especially among Black Americans and Asian Americans),
Alzheimer’s and dementia care, including:
and lack of family and social support. Fewer respondents saw language

∙ Knowledge and understanding of the disease. as a barrier to receiving dementia care, but among current caregivers,

∙ Access to care and support services. almost 1 in 4 Asian Americans (23%) and nearly 1 in 5 Hispanic care-

∙ Trust in health care, providers and disease research. givers (17%) cited language as a barrier to care.

∙ Interest in clinical trials. When asked more directly about the impact of race or ethnicity on

∙ Existence of discrimination and how that impacts care. the quality of care, two-thirds of Black Americans (66%) believe it is
harder for Black Americans to get excellent care for Alzheimer’s dis-
ease or other dementias. Likewise, 2 in 5 Native Americans (40%) and
Survey of U.S. adults
Hispanic Americans (39%) believe their own race or ethnicity makes it
A survey of 2,491 U.S. adults age 18 and older was conducted from
harder to get care, as do one-third of Asian Americans (34%).
October 26, 2020, to November 11, 2020. Data was collected by NORC
Caregivers, too, see discrimination as a top barrier, with 1 in 4 Black
at the University of Chicago via the AmeriSpeak® panel. AmeriSpeak is
caregivers (25%) citing discrimination as a barrier, followed by Native
a probability-based panel of all U.S. households. The survey included
945 White respondents. Oversamples of Hispanic (n = 541), Black American (19%), Asian American (17%), and Hispanic (8%) caregivers.

(n = 515), and Asian Americans (n = 412) were weighted back to In fact, more than half of Native American (63%), Black (61%) and His-

their true population proportions for statistical analysis and report- panic (56%) caregivers report having experienced racial discrimination

ing. For full inclusion of Native Americans, the same survey was admin- when navigating health care settings for their care recipient. The same
is true for nearly half of those who are Asian American (47%). Two in
istered to an additional sample of 406 Native Americans recruited
5 caregivers (41%) who provide unpaid care to a Black person say that
through online (non-probability) panels with sampling stratified and
race makes it harder for them to get excellent health care. Nearly 1 in 3
data weighted on gender, age, income and education to match U.S. Cen-
caregivers of Hispanic people (32%) say the same.
sus Bureau data. The survey was offered in both English and Spanish.
What specifically have caregivers experienced? The top problem
Survey of caregivers cited was that providers or staff do not listen to them because of their
A survey of 1,392 U.S. adults who were current or recent unpaid care- race, color, or ethnicity (Table 21). This was especially high among Black
givers for an adult relative or friend age 50 or older experiencing prob- caregivers (42%), followed by Native American (31%), Asian American
lems with thinking, understanding, or remembering things was con- (30%) and Hispanic (28%) caregivers. Fewer than 1 in 5 White care-
ducted from October 21, 2020, through November 22, 2020. The sam- givers (17%) expressed this same view. More than 1 in 4 caregivers of
ple included White (n = 313), Hispanic (n = 309), Black (n = 305), color report health care providers treating them as if they were “not
Asian (n = 301) and Native American caregivers (n = 154), and care- smart” (Native American, 43%; Asian American, 28%; Black, 28%; and
 379

TA B L E 2 0 Perceived Barriers to Getting Excellent Health Care and Support for Alzheimer’s or Another Dementia Among U.S. Adults

White Hispanic Black Asian Native

Barrier Americans Americans Americans Americans Americans
Affordability of care 61% 55% 52% 70% 61%
Lack of good health care insurance coverage 31% 41% 31% 39% 36%
Lack of good health care services in my community 20% 24% 27% 27% 24%
Lack of family and social support to help me 20% 21% 20% 25% 20%
Being treated differently because of my race, color or ethnicity 1% 18% 36% 19% 12%
Not being able to communicate easily in English 4% 9% 9% 8% 5%
Other barriers 2% 1% 1% 1% 2%
There would be no barriers 21% 17% 20% 12% 14%

TA B L E 2 1 Types of Discrimination Based on Race, Color, or Ethnicity Among Alzheimer’s and Dementia Caregivers

White Hispanic Black Asian Native

Type of Discrimination Americans Americans Americans Americans Americans
Felt not listened to 17% 28% 42% 30% 31%
Provider acted like you were not smart 11% 26% 28% 28% 43%
Treated with less courtesy than others 11% 26% 26% 23% 22%
Treated with less respect than others 8% 24% 26% 20% 27%
Received poorer service than others 7% 21% 19% 10% 18%
Provider acted afraid of you 7% 11% 13% 7% 4%

Hispanic, 26%) compared with about 1 in 10 White (11%) caregivers. An overwhelming majority of non-White respondents said it was
In addition, at least one-fifth of caregivers of color report being treated important for Alzheimer’s and dementia care providers to understand
with less courtesy and/or less respect. their ethnic or racial background and experiences, including Native
Not surprisingly, the belief among Americans of color (not just care- Americans (92%), Black Americans (89%), Hispanic Americans (85%)
givers) that discrimination is a barrier to Alzheimer’s and dementia care and Asian Americans (84%). However, fewer than half of Black respon-
is rooted in their own experiences with the health care system. Half dents (48%) and Native American respondents (47%) felt confident
of Black Americans (50%), more than 2 in 5 Native Americans (42%), that people in their communities with Alzheimer’s or other demen-
and a third of all Asian (34%) and Hispanic (33%) Americans report hav- tias currently have access to such providers, and fewer than two-
ing experienced discrimination when seeking health care (Figure 18). In thirds of Asian Americans (63%) and Hispanic Americans (59%) felt the
contrast, fewer than 1 in 10 White Americans (9%) report having expe- same.
rienced discrimination because of their race, color or ethnicity. The survey of caregivers mirrored these results. Among those car-
ing for a non-White person, most felt it was important for health care
Desire for providers who understand ethnic or racial background
providers to understand the ethnic or racial background and experi-
Given their own experiences with discrimination, it is not surprising
ences of the person they are caring for, including 96% of those caring
that people of color feel it is important for Alzheimer’s and demen-
for Native Americans, 94% of those caring for Asian Americans, 91% of
tia care providers to be more culturally competent. Responses from
those caring for Black Americans and 89% of those caring for Hispanic
both surveys indicate a strong desire for dementia care providers who
Americans.
understand different racial and ethnic backgrounds, but many survey
Far fewer caregivers rated their current health care providers as
respondents say access to these providers is lacking.
being “excellent” or “good” when it comes to understanding the ethnic
Figure 19 shows responses to two questions that were tailored
or racial background and experiences of the person they are caring for
to a respondent’s race or ethnicity. For example, Black respondents
(Native Americans, 67%; Hispanic Americans, 65%; Black Americans,
were asked: “How important do you feel it is for Black people with
61%; and Asian Americans, 53%).
Alzheimer’s or other dementias to have health care providers who
understand their background and experiences as Black people?” And Belief that research is biased is more common among non-whites;
then: “How confident are you that Black people with Alzheimer’s or Blacks do not believe a cure will be shared equally
other dementias have access to health care providers who understand The experiences and views of discrimination expressed by respon-
their background and experiences as Black people?” dents in both surveys are reflected in their views on clinical
380

FIGURE 18 Percentage of U.S. adults who have experienced racial or ethnic discrimination when seeking health care

FIGURE 19 Access to health care providers who understand racial and ethnic backgrounds among U.S. adults

trials, research and potential treatment for Alzheimer’s and other It’s not surprising, then, that among Americans as a whole, Blacks
dementias. have less interest in clinical research trials to prevent or slow the pro-
A majority of Black Americans (62%) believe that medical research gression of Alzheimer’s disease. White Americans are most likely to
is biased against people of color – a view shared by substantial num- express interest (82%), followed by Native Americans (81%), Hispanic
bers of Asian Americans (45%), Native Americans (40%) and Hispanic Americans (78%), Asian Americans (73%) and lastly, Black Americans
Americans (36%) as well. Notably, even a third of White Americans (67%).
(31%) see medical research as being biased against people of color Responses from caregivers present a somewhat different picture.
(Figure 20). Compared with other groups, Black caregivers and Hispanic caregivers
 381

F I G U R E 2 0 Percentage of U.S. adults who believe medical

research is biased against people of color F I G U R E 2 1 Percentage of U.S. adults who trust an Alzheimer’s
cure will be shared equally regardless of race, color or ethnicity

are somewhat more interested in clinical trials for their care recip-
ient (Black caregivers, 73%; Hispanic caregivers, 70%), while Asian sons for not wanting to participate; this reason was cited by 43% of
American caregivers are least interested in having their care recipi- respondents.
ent be involved in clinical research (57%). Overall, interest in clinical For caregivers, reasons for lack of interest were more varied. Black
trial participation was higher in both Alzheimer’s Association surveys caregivers were most focused on lack of perceived benefit (35%) and
than is reflected in current trial participation, particularly for people of not wanting the person to be a guinea pig (32%). Hispanic caregivers
color.682 Follow-up research is needed to better understand mitigating were most focused on not wanting a placebo treatment (28%). Asian
factors that may prevent interested individuals from actual trial partic- American caregivers were twice as likely as others to say the per-
ipation. son might not be treated fairly (20%). Native American caregivers
Among all U.S. adults who are not interested in clinical trial partic- were more focused on not wanting the person to be a guinea pig
ipation, the most common reason cited regardless of race or ethnic (40%) and potential lack of support among family and community
group is not wanting to be a “guinea pig” (Table 22). This sentiment is (39%).
especially strong among Black Americans (69%), for whom other dif- The impact of discrimination and bias is also apparent in respon-
ferences stand out as well. For example, almost half of Black Americans dents’ views on treatment access. Should clinical trials identify a treat-
(45%) worry that treatments might cause sickness. They are twice as ment or “cure” for Alzheimer’s disease, only half of Black Americans
likely as other groups to say they “don’t trust medical research.” And (53%) trust that this cure will be shared equally regardless of race, color
they are more than twice as likely than other racial or ethnic groups to or ethnicity (Figure 21). This is in sharp contrast to White Americans
say they “might not be treated fairly.” (75% of whom believe it will be shared) and lower than other racial and
A noteworthy difference for Asian Americans is that the poten- ethnic groups as well, including Asian Americans (69%), Hispanic Amer-
tial time and cost of clinical trials ranks second among their rea- icans (66%), and Native Americans (65%).

TA B L E 2 2 Reasons Cited By U.S. Adults for Not Being Interested in Clinical Trial Participation

White Hispanic Black Asian Native

Reason Americans Americans Americans Americans Americans
Don’t want to be a guinea pig 49% 51% 69% 54% 51%
Treatment might cause sickness 37% 36% 45% 32% 18%
Time and cost might be too much 33% 26% 24% 43% 31%
Don’t trust pharmaceutical companies 28% 22% 29% 19% 26%
Doubt there would be any benefit 26% 26% 21% 28% 36%
Might get placebo 17% 12% 14% 20% 9%
Don’t trust medical research 10% 10% 24% 6% 16%
Unable to travel or get transportation 11% 11% 16% 19% 23%
Might not be treated fairly 3% 8% 22% 12% 10%
382

While the majority of both White and non-White Americans trust for a loved one, the rewards of providing care may help balance the
health care providers generally, trust is somewhat weaker among His- stress.
panic, Black and Native Americans. Asian Americans are most likely to Over half of unpaid caregivers surveyed report providing assistance
say they trust health care providers (93%), followed by White Ameri- with personal care, such as bathing, eating or dressing. The percent-
cans (88%), with lower numbers for Black Americans (82%), Hispanic age providing this form of care is highest among Black caregivers (71%)
Americans (81%) and Native Americans (79%). and Hispanic caregivers (68%), followed by Asian American caregivers
Perhaps related to this, Hispanic, Black and Native Americans are (59%), Native American caregivers (56%) and White caregivers (53%).
twice as likely as White Americans to say they would not see a doctor Fewer Black Americans (78%) and Hispanic Americans (83%) worry
if they were experiencing thinking or memory problems. Almost 1 in 10 about being a burden on family if they develop Alzheimer’s disease
Hispanics (9%), Blacks (8%) and Native Americans (9%) say they would compared with other groups (White Americans, 93%; Asian Americans,
not see a health care provider, versus 1 in 25 White Americans (4%). 90%; Native Americans, 84%).
Six percent of Asian Americans say they would not see a health care And while nearly 2 in 3 caregivers (64%) say that caregiving is stress-
provider. ful, nearly all (92%) say that caregiving is rewarding, as well.
One in 5 Black Americans (21%) and Hispanic Americans (20%) say
they would feel insulted if a doctor suggested an assessment for their
thinking or memory, versus half as many White Americans who would 7.5 Bridging racial and ethnic barriers in
feel insulted (10%). About 1 in 6 Asian Americans (16%) would feel Alzheimer’s and dementia care: A path forward
insulted, as would 1 in 7 Native Americans (14%).
Hispanics are also least confident they would be able to access Findings from the Alzheimer’s Association surveys indicate that
quality health care for Alzheimer’s disease or other dementias if they despite ongoing efforts to address health and health care disparities in
needed it, especially compared with White Americans. In particular, Alzheimer’s and dementia care, there is still much work to do.
fewer Hispanic Americans express confidence in being able to get Current efforts to reduce health disparities, address social determi-
excellent health care for specialist testing and diagnosis (69% vs 79% of nants of health, build diversity in the health care profession, and train
White Americans) and health care and support to manage the disease health care providers to meet the needs of a growing population of
(67% vs 74% of White Americans). older adults from different racial and ethnic groups must be acceler-
ated. Amid broader calls for social justice, greater strides must be made
Knowledge and understanding of Alzheimer’s disease varies
to eliminate discrimination and other forms of bias to ensure all Ameri-
The Alzheimer’s Association survey of US adults also revealed that
cans have access to high quality dementia care and support services, as
fewer people of color report knowing someone with Alzheimer’s. Four
well as opportunities to participate in — and benefit from — Alzheimer’s
of 5 White Americans (80%) report having known somebody with
research.
Alzheimer’s or another type of dementia. The numbers among all other
Based on the surveys’ findings, paths forward include:
groups are 15 to 20 percentage points lower (Hispanic Americans,
64%; Black Americans, 65%; Asian Americans, 59%; and Native Ameri-
∙ Preparing the workforce to care for a racially and ethnically diverse
cans, 65%).
population of older adults.
Native Americans are least worried about developing Alzheimer’s
∙ Increasing diversity in dementia care.
disease, with 1 in 4 (25%) expressing concern, followed by 1 in 3 Black
∙ Engaging, recruiting and retaining diverse populations in
Americans (35%) and 2 in 5 Hispanic Americans (41%). In contrast,
Alzheimer’s research and clinical trials.
almost half of White Americans (48%) worry about it, as do nearly as
many Asian Americans (46%). Hispanic and Native Americans are also
more likely than other groups to believe they will not live long enough
7.5.1 Preparing the workforce to care for a racially
to get Alzheimer’s or another dementia. More than a third of Native
and ethnically diverse population of older adults
Americans (35%) and one-quarter of Hispanic Americans (28%) believe
they will not live long enough, versus fewer than 1 in 4 Asian Americans
As described in the Prevalence Section, older Black and Hispanic
(19%), Black Americans (20%), and White Americans (23%).
Americans are more likely to have Alzheimer’s or other dementias
Additionally, more than half of non-White Americans believe that
than Whites, and this is likely due in part to health and health care
significant loss of memory or cognitive abilities is a “normal part of
disparities.85,87,271–277,284,285,287,288 Coinciding with increasing diver-
aging” rather than being an indicator of disease (Hispanic Americans,
sity in the general population, the number of older Americans, particu-
57%; Asian Americans, 56%; Black Americans, 55%; and Native Ameri-
larly the oldest-old (those age 85 or older), is also expected to grow —
cans, 53%). This is in contrast to White Americans, among whom fewer
with more than twice as many cases of Alzheimer’s and other demen-
than half (48%) believe that memory loss or cognitive decline is normal.
tias anticipated by 2050.216 Up to 39% of this older adult population in
Caregiving is stressful but rewarding 2050 will be minorities.683,684
The Alzheimer’s Association survey of caregivers provided additional Current and future health care providers need to be prepared to
insights, indicating that for many family and friends who provide care screen, diagnose and treat Alzheimer’s and dementia in this expanding
 383

racially and ethnically diverse population of older adults so that dispar- and other patient characteristics influence how physicians treat peo-
ities are not perpetuated. ple. Medical schools are responding to the call to action to train future
Earlier reports on racial and ethnic differences in Alzheimer’s health physicians to recognize and overcome implicit bias. Hospitals, clinics
care have proposed cultural competence education as one solution and health care systems are also working to address this issue among
to address disparities. Training providers to recognize and overcome their employees.694
implicit bias is another method that organizations are using to tackle Although the Alzheimer’s Assoication surveys did not explore how
disparities. implicit bias is impacting dementia care, respondents did indicate
that they faced discrimination. Discriminatory behaviors are often the
Cultural competence
result of implicit bias.695 A survey indicates that implicit bias held
At the organizational level, cultural competence helps build a diverse
by the investigators and clinical trial recruiters in the field of cancer
and inclusive workforce.685 At the provider level, cultural competence
research may be a reason for the low recruitment and participation of
training equips professionals with the skills and resources needed to
racial and ethnic minorities in cancer clinical trials.696 Less has been
connect with dementia care recipients and caregivers across racial and
reported on how implicit bias contributes to low participation rates
ethnic groups in a way that is sensitive to culture and language.686
in Alzheimer’s and dementia research and suggests an area for future
Elements of cultural competence686 are:
investigation.
There is little information about the implementation and outcomes
∙ A culturally diverse staff that reflects the population served.
of implicit bias training specifically in Alzheimer’s and dementia care.
∙ Ability to overcome language barriers, either with bilingual staff or
However, specialties that play a role in dementia care, such as pri-
interpreters.
mary care/family medicine and geriatric medicine, do have materials
∙ Training for providers on the cultures and languages represented in
to train providers. For example, the National Institute on Aging offers
the population.
resources on implicit bias for those who care for older adults, and The
∙ Patient materials and practice signage that are translated and sensi-
EveryONE Project from the American Academy of Family Physicians
tive to cultural norms.
recently introduced the comprehensive Implicit Bias Training Guide for
primary care physicians.697–699
There have been several efforts to instill cultural competence into
dementia care. Stanford Health Care’s Memory Support Program
(MSP) is one such example. The model’s efforts encompass culturally
7.5.2 Increasing diversity in dementia care
competent care in inpatient and outpatient settings to ensure continu-
ity for patients and caregivers.687 A case study showed that MSP is a
Trust in health care and perceptions of health care quality are eroded
valuable way to provide culturally competent care to African Ameri-
when individuals experience racial and ethnic discrimination in clinical
cans and posits this model could be implemented in other settings.687
settings. An analysis of data from the 2015 to 2016 Adult California
Cultural competence training has also been proposed as a component
Health Interview Survey found that discrimination in a clinical setting
of Alzheimer’s and dementia nursing and nursing assistant training
“make[s] a person less likely to have a future interaction with health
curricula.688
care,” such as by not receiving medical care when necessary or not fill-
Other organizations that engage health care providers who may
ing prescriptions.700
screen and treat individuals with dementia are also committed to
The Alzheimer’s Association surveys uncovered weaker trust in the
cultural competence. The U.S. Department of Health and Human
health care system among Hispanics, Blacks and Native Americans. The
Services’ National Culturally and Linguistically Appropriate Services
same groups were also less likely to see a health care provider for diag-
(CLAS) Standards offer information to improve communication with
nosis or treatment of Alzheimer’s disease. This could exacerbate exist-
people from different ethnic groups in a way that is respectful and
ing health disparities. People of color surveyed already face discrimi-
responsive to their culture.683,689 Recognizing the changing racial and
nation and anticipate encountering future discrimination when seek-
ethnic demographics of Alzheimer’s disease, the Alzheimer’s Associ-
ing Alzheimer’s care, and as a result want to see their racial and ethnic
ation began promoting cultural competence and cultural sensitivity
backgrounds reflected in their Alzheimer’s and dementia health care
in dementia care more than a decade ago and this effort remains a
providers.
priority.690 In 2016, the American Geriatrics Society (AGS) formed an
Currently, only 1 in 3 U.S. physicians are Black, American Indian
Ethnogeriatrics Committee that issued a guidance stressing the impor-
or Alaska Native, Hispanic or Asian.701 Primary care is more diverse,
tance of cultural competence in geriatric care.683 An Ethnogeriatrics
which is encouraging. Approximately 40% of primary care physicians
Special Interest Group now convenes at the annual AGS meeting to dis-
are Black, Hispanic, American Indian or Alaska Native.702 As discussed
cuss ongoing projects and new developments in the field.691
in the Alzheimer’s Association 2020 Alzheimer’s Disease Facts and Fig-
Implicit bias ures Special Report,530 primary care physicians play an important role
Implicit bias, or when people act unintentionally on prejudices or in diagnosing and caring for people with Alzheimer’s and other demen-
stereotypes, is a key contributor to health care disparities.692,693 tias. The survey results presented earlier indicate that Hispanic Amer-
Implicit bias clouds decision-making such that race, gender, ethnicity icans may rely on their primary care providers more than other groups
384

to test for and diagnose Alzheimer’s disease because they face barriers greater diversity in Alzheimer’s disease research and clinical trials must
to accessing specialists. Ensuring diversity in these front-line providers be accelerated. Without appropriate participation by Black, Hispanic,
may help reduce future disparities in dementia care. Diversity in other Asian and Native Americans in Alzheimer’s clinical trials and research,
related specialties, such as neurology and geriatric medicine, however, it is impossible to get a complete understanding of how racial and eth-
remains low.703,704 nic differences may affect the efficacy and safety of potential new
Shortages of physicians and other health care professionals in treatments. Future clinical trials must do more to reflect the entire pop-
underserved areas contribute to health disparities. The racial and eth- ulation so everyone benefits from advances in Alzheimer’s research.
nic diversity of medical school applicants is not keeping pace with shift- A critical first step to increasing diverse participation and represen-
ing demographics of the U.S. population. Half of applicants are White tation in clinical research is building and restoring trust in underrep-
and almost one-quarter are Asian.705 Together, Blacks, Hispanics, indi- resented communities. One way to do so is through community-based
viduals who are Latino or of Spanish origin, and American Indians or organizations (CBOs) and other respected local partners.709 These
Alaska Natives make up only 15% of applicants.703 Since Blacks and efforts are gaining traction but should be expanded to more groups
American Indians or Alaska Natives enrolled in medical school are two and more communities. The Healthy Brain Initiative State and Local
to three times more likely than their White or Asian American coun- Public Health Partnerships to Address Dementia: 2018-2023 Road Map,
terparts to practice in an underserved area, it is important to support launched in partnership with the Alzheimer’s Association and the Cen-
programs that recruit diverse students to medical schools in greater ters for Disease Control and Prevention (CDC), is organized around a
numbers.706 core principle of “eliminating disparities and collaborating across mul-
Developing a workforce that reflects the demographics of individ- tiple sectors.” In addition, the Alzheimer’s Association and CDC col-
uals with Alzheimer’s or other dementias should begin during out- laborated to develop the first-ever Healthy Brain Initiative Road Map
reach and recruitment to training programs, continue with program- for Indian Country. The Association has used this guidebook to build
ming designed to support students of color during their training years, relationships with American Indian/Alaska Native communities, raise
and extend to offering residency opportunities in health care settings awareness about Alzheimer’s and collaborate with national partners
that treat diverse populations. In addition, hiring practices should con- on communications tailored to the unique tribal traditions present in
sider diversity and inclusion to meet the needs of local patient popula- American Indian/Alaska Native communities.712,713
tions. To succeed, relationships with CBOs must demonstrate that they
Future Alzheimer’s and dementia research can be strengthened by are sustainable, transparent and integrated with other public health
increasing the diversity of investigators and professionals who conduct efforts. Strong community relationships can serve to address mis-
clinical trial and population health research. Doing so introduces varied conceptions and mistrust about research because the community has
perspectives, lived experiences and cultural nuances vital to culturally a sense of ownership in the research initiative.714,715 Participants
accountable research. For example, one study found that Black com- are stakeholders rather than bystanders or subjects in the endeavor.
munity liaisons were able to successfully recruit Black participants to a This could make a difference in reinstating trust that Alzheimer’s
dementia clinical trial when they were the ones to explain and manage treatments or cures will be shared equitably. For example, a recent
trial procedures.707 report suggests that strong commitment to earning the trust of
The innovative Institute on Methods and Protocols for Advance- the Black community is essential to encourage their participation in
ment of Clinical Trials in Alzheimer’s disease and related demen- research.716
tias (IMPACT-AD) program launched in fall of 2020 is a step toward The Alzheimer’s Association is working with several CBOs and
this goal.708 A major emphasis of this intensive training course is other groups to educate and engage diverse communities about
to enhance future Alzheimer’s and dementia research. IMPACT-AD Alzheimer’s disease and care and support services the Association pro-
includes efforts to ensure program participants reflect diversity across vides. National partnerships include those with the African Methodist
the spectrum. Its inaugural class included physicians, nurses, public Episcopal Church, the National Hispanic Council on Aging and SAGE
health professionals, scientists and study coordinators, as well as post- (Advocacy & Services for LGBTQ Elders). In early 2021, the Association
doctoral researchers and research fellows from universities and health announced new partnerships with the Thurgood Marshall College Fund
care systems across the country. Participants included both early- and Tzu Chi USA. Local Association chapters are also working with var-
career and established professionals. Seventy percent were women ious nearby groups to engage diverse communities. In addition, sev-
and 40% self-identified as people of color. eral chapters are working with promotoras de salud (community health
workers) to provide Alzheimer’s education and resources to Spanish-
speaking communities.
7.5.3 Engaging, recruiting and retaining diverse Other notable but relatively new efforts to increase recruitment and
populations in Alzheimer’s research and clinical trials retention of diverse groups are also underway. In 2018, the National
Institute on Aging released its National Strategy for Recruitment and
There is a large body of evidence demonstrating low diversity in Participation in Alzheimer’s and Related Dementias Research. The
clinical trials and research, and in Alzheimer’s research the partici- strategy outlines practical, proactive approaches to help dementia
pants are mostly older non-Hispanic Whites.709–711 Efforts to ensure study sites engage a wider, more diverse group of volunteers.717
 385

New guidance released in late 2020 by the U.S. Food and Drug projections and incorporated information on the prevalence of
Administration aimed at enabling greater diversity in clinical tri- Alzheimer’s dementia for Hispanic/Latino Americans.
A2.
Differences between CHAP and ADAMS estimates for
als through changes to eligibility criteria, enrollment practices and
Alzheimer’s dementia prevalence: The number of people in the
trial designs is a welcome development. This guidance offers new U.S. living with Alzheimer’s dementia is higher in CHAP than in
approaches to help Alzheimer’s and dementia researchers navigate the Aging, Demographics, and Memory Study (ADAMS).216,219
current barriers that hinder clinical trial recruitment of racial and eth- This discrepancy is mainly due to two differences in diagnostic
criteria: (1) a diagnosis of dementia in ADAMS required
nic minorities. These barriers include strict eligibility requirements,
impairments in daily functioning and (2) people determined to
participant burden, and lack of culturally appropriate communication have vascular dementia in ADAMS were not also counted as
and outreach to build trust with these diverse populations.718 having Alzheimer’s, even if they exhibited clinical symptoms
In December 2020, the Alzheimer’s Association and the American of Alzheimer’s.218 Because the more stringent threshold for
dementia in ADAMS may miss people with mild Alzheimer’s
College of Radiology announced the opening of recruitment for the
dementia and because clinical-pathologic studies have shown
New IDEAS study with particular focus on outreach in Black and His-
that mixed dementia due to both Alzheimer’s and vascular
panic communities. New IDEAS will enroll 7,000 participants, includ- pathology in the brain is very common,22 the Association
ing 2,000 Hipanics/Latinos and 2,000 Blacks/African Americans. New believes that the larger CHAP estimates may be a more
IDEAS will build upon the original IDEAS study, which provided the relevant estimate of the burden of Alzheimer’s dementia in the
United States.
strongest phase 4 data to date supporting the clinical value of brain A3.
State-by-state prevalence of Alzheimer’s dementia: These
amyloid positron emission tomography (PET) scans. The goal of New state-by-state prevalence numbers are based on an analysis of
IDEAS is to determine if using a brain amyloid PET scan can help incidence data from CHAP, projected to each state’s popula-
inform an individual’s memory care plan and improve their health tion for 2020 and 2025, with adjustments for state-specific age,
gender, years of education, race and mortality.239 These pro-
outcomes.719–721
jections come from a previous analysis of CHAP data that is
not the same as the analysis providing the total number for the
United States in 2021. State-by-state projections are not avail-
7.6 Conclusion able for 2021.
A4.
Criteria for identifying people with Alzheimer’s or other
dementias in the Framingham Heart Study: From 1975 to 2009,
The Alzheimer’s Association surveys of U.S. adults and caregivers 7,901 people from the Framingham Study who had survived
of individuals with cognitive issues are among the first to explore free of dementia to at least age 45, and 5,937 who had survived
perspectives and experiences of different racial and ethnic groups free of dementia until at least age 65 were followed for inci-
dence of dementia.244 Diagnosis of dementia was made accord-
as they relate to health care for Alzheimer’s and other dementias.
ing to the Diagnostic and Statistical Manual of Mental Disorders,
Collectively, the responses indicate that organizations must remain 4th Edition (DSM-IV) criteria and required that the participant
committed to rectifying health and health care disparities for older survive for at least 6 months after onset of symptoms. Standard
adults. Disparities in Alzheimer’s and dementia care are the result diagnostic criteria (the NINCDS-ADRDA criteria from 1984)
were used to diagnose Alzheimer’s dementia. The definition
of deeply rooted issues in the health care system. The NIA Health
of Alzheimer’s and other dementias used in the Framingham
Disparities Research Framework722 recommends responses that
Study was very strict; if a definition that included milder disease
are multi-level and consider factors and risks over the lifecourse to and disease of less than six months’ duration were used, life-
address these disparities. Actions and solutions are needed to ensure time risks of Alzheimer’s and other dementias would be higher
the already devastating burden of Alzheimer’s disease and other than those estimated by this study.
A5.
Projected number of people with Alzheimer’s dementia,
dementias on diverse racial and ethnic groups is not made worse by
2020-2060: This figure comes from the CHAP study.216 Other
discrimination and health inequities in the current system. projections are somewhat lower (see, for example, Brookmeyer
et al.723 ) because they relied on more conservative methods for
ACKNOWLEDGMENTS counting people who currently have Alzheimer’s dementia.A2
Nonetheless, these estimates are statistically consistent with
The Alzheimer’s Association acknowledges the contributions of
each other, and all projections suggest substantial growth in
Joseph Gaugler, Ph.D., Bryan James, Ph.D., Tricia Johnson, Ph.D., the number of people with Alzheimer’s dementia over the
Jessica Reimer, Ph.D., and Jennifer Weuve, M.P.H., Sc.D., in the prepa- coming decades.
A6.
ration of 2021 Alzheimer’s Disease Facts and Figures. Annual mortality rate due to Alzheimer’s disease by state:
Unadjusted death rates are presented rather than age-adjusted
death rates in order to provide a clearer depiction of the burden
ENDNOTES of mortality for each state. States such as Florida with larger
populations of older people will have a larger burden of mortal-
A1.
Estimated prevalence (number and proportion) of Americans ity due to Alzheimer’s — a burden that appears smaller relative
age 65 and older with Alzheimer’s dementia for 2021: The num- to other states when the rates are adjusted for age.
ber 6.2 million is from updated prevalence estimates based A7.
Number of family and other unpaid caregivers of people with
on data from the Chicago Health and Aging Project (CHAP) Alzheimer’s or other dementias: To calculate this number, the
and population projections from the U.S. Census.216 The num- Alzheimer’s Association started with data from the Behavioral
ber is higher than previous estimates from CHAP data and Risk Factor Surveillance System (BRFSS) survey. Between
the US census because it used more recently updated Census 2015 and 2019, 44 states and the District of Columbia utilized
386

the BRFSS caregiver module. This module identified respon- naire design and interviewing were conducted by Abt SRBI of
dents age 18 and over who had provided any regular care New York.
A9.
or assistance during the past month to a family member or Number of hours of unpaid care: The BRFSS survey asks care-
friend who had a health problem, long-term illness or disability. givers to identify, within five time frames, the number of hours
The module asks a series of follow-up questions, including they provide care in an average week. Using the method devel-
asking the caregiver to identify what the main health problem, oped by Rabarison and colleagues,371 the Alzheimer’s Associ-
long-term illness, or disability that the person they care for ation assumed the midpoint of each time frame was the aver-
has. One of the reported condition categories is Alzheimer’s age number of hours for each caregiver within that time frame
disease, dementia, or other cognitive impairment. This number and then calculated the overall average number of hours of
does not include caregivers whose caregiving recipient has weekly care provided by dementia caregivers in each state. This
dementia, but is not their main condition. To calculate the total number was then converted to a yearly average and multiplied
percentage of adults that are caregivers for individuals living by the number of caregivers in each stateA7 to determine the
with dementia, data collected in 2019 by the National Alliance total number of hours of care provided. For the 6 states with-
for Caregiving (NAC)/AARP was also utilized. The NAC/AARP out recent BRFSS data, their number of hours was calculated
survey asked respondents age 18 and over whether they were using the aggregated average of BRFSS data from 2015-2017.
providing unpaid care for a relative or friend age 18 or older When added together, across all 50 states and the District of
or had provided such care during the past 12 months. Respon- Columbia, the total number of hours provided by Alzheimer’s
dents who answered affirmatively were then asked about the and dementia caregivers is 15.338 billion hours.
A10.
health problems of the person for whom they provided care: Value of unpaid caregiving: For each state, the hourly value
11% of respondents reported dementia as the main condition of care was determined as the average of the state minimum
of their care recipient, while 26% of all respondents reported hourly wage724 and the state median hourly cost of a home
the presence of dementia. Using this ratio in combination health aide.615 The average for each state was then multiplied
with BRFSS data, the Alzheimer’s Association was able to by the total number of hours of unpaid care in that stateA9 to
determine the percentage of adults in 44 states and the derive the total value of unpaid care. Adding the totals from
District of Columbia who are caregivers for individuals living all states and the District of Columbia resulted in an economic
with Alzheimer’s or another dementia. For the 6 states without value of $256,650 billion for dementia caregiving in the United
2015-2019 BRFSS data, this percentage was estimated using States in 2020.
A11.
state-specific BRFSS data from 2009 combined with the aggre- Lewin Model on Alzheimer’s and dementia costs: These num-
gated average of BRFSS data from 2015-2017. To determine bers come from a model created for the Alzheimer’s Associa-
the number of Alzheimer’s and dementia caregivers in each tion by the Lewin Group. The model estimates total payments
state, the percentages were applied to the estimated number for health care, long-term care and hospice — as well as
of people age 18 and older in each state in July 2020, using state-by-state Medicaid spending — for people with
U.S. Census Bureau data available at: https://www.census. Alzheimer’s and other dementias. The model was updated
gov/programs-surveys/popest/technical-documentation/ by the Lewin Group in January 2015 (updating previous model)
research/evaluation-estimates.html. This resul- and June 2015 (addition of state-by-state Medicaid estimates).
ted in a total of 11.199 million Alzheimer’s and dementia Detailed information on the model, its long-term projections
caregivers across all 50 states and the District of Columbia. and its methodology are available at alz.org/trajectory. For
A8.
The 2014 Alzheimer’s Association Women and Alzheimer’s the purposes of the data presented in this report, the follow-
Poll: This poll questioned a nationally-representative sample ing parameters of the model were changed relative to the
of 3,102 American adults about their attitudes, knowledge methodology outlined at alz.org/trajectory: (1) cost data from
and experiences related to Alzheimer’s and dementia from the 2011 Medicare Current Beneficiary Survey (MCBS) were
Jan. 9, 2014, to Jan. 29, 2014. An additional 512 respon- used rather than data from the 2008 MCBS; (2) prevalence
dents who provided unpaid help to a relative or friend with among older adults was assumed to equal the prevalence levels
Alzheimer’s or a related dementia were asked questions about from Rajan and colleagues216 and included in this report (6.2
their care provision. Random selections of telephone num- million in 2021), rather than the prevalence estimates derived
bers from landline and cell phone exchanges throughout the by the model itself; (3) estimates of inflation and excess cost
United States were conducted. One individual per household growth reflect the most recent relevant estimates from the
was selected from the landline sample, and cell phone respon- cited sources (Centers for Medicare & Medicaid Services
dents were selected if they were 18 years old or older. Inter- [CMS] actuaries and the Congressional Budget Office); and
views were administered in English and Spanish. The poll “over- (4) the most recent (2014) state-by-state data from CMS on
sampled” Hispanics/Latinos, selected from U.S. Census tracts the number of nursing home residents and percentage with
with higher than an 8% concentration of this group. A list sam- moderate and severe cognitive impairment were used in lieu of
ple of Asian Americans was also utilized to oversample this 2012 data.
A12.
group. A general population weight was used to adjust for num- All cost estimates were inflated to year 2020 dollars using the
ber of adults in the household and telephone usage; the sec- Consumer Price Index (CPI): All cost estimates were inflated
ond stage of this weight balanced the sample to estimated using the seasonally adjusted average prices for medical care
U.S. population characteristics. A weight for the caregiver services from all urban consumers. The relevant item within
sample accounted for the increased likelihood of female and medical care services was used for each cost element. For
white respondents in the caregiver sample. Sampling weights example, the medical care item within the CPI was used to
were also created to account for the use of two supplemental inflate total health care payments; the hospital services item
list samples. The resulting interviews comprise a probability- within the CPI was used to inflate hospital payments; and the
based, nationally representative sample of U.S. adults. A care- nursing home and adult day services item within the CPI was
giver was defined as an adult over age 18 who, in the past used to inflate nursing home payments.
A13.
12 months, provided unpaid care to a relative or friend age Medicare Current Beneficiary Survey Report: These data come
50 or older with Alzheimer’s or another dementia. Question- from an analysis of findings from the 2011 Medicare Current
 387

Beneficiary Survey (MCBS). The analysis was conducted for 2. Barthelemy N, Joseph-Mathurin N, Gordon BA, et al. A soluble
the Alzheimer’s Association by Avalere Health.240 The MCBS, phosphorylated tau signature links tau, amyloid and the evolution
a continuous survey of a nationally representative sample of of stages of dominantly inherited Alzheimer’s disease. Nat Med
about 15,000 Medicare beneficiaries, is linked to Medicare 2020;26:398-407.
claims. The survey is supported by the U.S. Centers for Medi- 3. Villemagne VL, Burnham S, Bourgeat P, et al. Amyloid ß deposition,
care & Medicaid Services (CMS). For community-dwelling sur- neurodegeneration, and cognitive decline in sporadic Alzheimer’s
vey participants, MCBS interviews are conducted in person disease: A prospective cohort study. Lancet Neurol 2013;12(4):357-
three times a year with the Medicare beneficiary or a proxy 367.
respondent if the beneficiary is not able to respond. For sur- 4. Reiman EM, Quiroz YT, Fleisher AS, et al. Brain imaging and fluid
vey participants who are living in a nursing home or another biomarker analysis in young adults at genetic risk for autosomal dom-
residential care facility, such as an assisted living residence, inant Alzheimer’s disease in the presenilin 1 E280A kindred: A case-
retirement home or a long-term care unit in a hospital or men- control study. Lancet Neurol 2012;11(2):1048-1056.
tal health facility, MCBS interviews are conducted with a staff 5. Jack CR, Lowe VJ, Weigand SD, et al. Serial PiB and MRI in nor-
member designated by the facility administrator as the most mal, mild cognitive impairment and Alzheimer’s disease: Implications
appropriate to answer the questions. Data from the MCBS for sequence of pathological events in Alzheimer’s disease. Brain
analysis that are included in 2021 Alzheimer’s Disease Facts and 2009;132:1355-1365.
Figures pertain only to Medicare beneficiaries age 65 and older. 6. Bateman RJ, Xiong C, Benzinger TL, et al. Clinical and biomarker
For this MCBS analysis, people with dementia are defined as: changes in dominantly inherited Alzheimer’s disease. N Engl J Med
• Community-dwelling survey participants who answered 2012;367(9):795-804.
yes to the MCBS question, “Has a doctor ever told you that you 7. Gordon BA, Blazey TM, Su Y, et al. Spatial patterns of neuroimag-
had Alzheimer’s disease or dementia?” Proxy responses to this ing biomarker change in individuals from families with autosomal
question were accepted. dominant Alzheimer’s disease: A longitudinal study. Lancet Neurol
• Survey participants who were living in a nursing home or 2018;17(3):241-250.
other residential care facility and had a diagnosis of Alzheimer’s 8. Braak H, Thal DR, Ghebremedhin E, Del Tredici K. Stages of the
disease or dementia in their medical record. pathologic process in Alzheimer disease: Age categories from 1 to
• Survey participants who had at least one Medicare claim 100 years. J Neuropathol Exp Neurol 2011;70(11):960-969.
with a diagnostic code for Alzheimer’s or other dementias in 9. Sato C, Barthélemy NR, Mawuenyega KG, et al. Tau kinetics in neu-
2008. The claim could be for any Medicare service, including rons and the human central nervous system. Neuron 2018;98(4):861-
hospital, skilled nursing facility, outpatient medical care, home 864.
health care, hospice or physician, or other health care provider 10. Hanseeuw, BJ; Betensky RA, Jacobs HIL, et al. Association of amyloid
visit. The diagnostic codes used to identify survey participants and tau with cognition in preclinical Alzheimer disease. JAMA Neurol
with Alzheimer’s or other dementias are 331.0, 331.1, 331.11, 2019;76(8):915-924.
331.19, 331.2, 331.7, 331.82, 290.0, 290.1, 290.10, 290.11, 11. Kapasi A, DeCarli C, Schneider JA. Impact of multiple pathologies
290.12, 290.13, 290.20, 290.21, 290.3, 290.40, 290.41, 290.42, on the threshold for clinically overt dementia. Acta Neuropathol
290.43, 291.2, 294.0, 294.1, 294.10 and 294.11. 2017;134(2):171-186.
Costs from the MCBS analysis are based on responses from 12. Brenowitz WD, Hubbard RA, Keene CD, et al. Mixed neuropatholo-
2011 and reported in 2020 dollars. gies and estimated rates of clinical progression in a large autopsy
A14.
Differences in estimated costs reported by Hurd and sample. Alzheimers Dement. 2017;13(6):654-662.
colleagues: Hurd and colleagues576 estimated per-person 13. National Institute on Aging. What are frontotemporal disor-
costs using data from participants in ADAMS, a cohort in ders? Available at: https://www.nia.nih.gov/health/what-are-
which all individuals underwent diagnostic assessments for frontotemporal-disorders. Accessed December 23, 2020.
dementia. 2021 Alzheimer’s Disease Facts and Figures estimated 14. Hogan DB, Jette N, Fiest KM, et al. The prevalence and incidence
per-person costs using data from the Medicare Current of frontotemporal dementia: A systematic review. Can J Neurol Sci
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the per-person costs estimated by Hurd and colleagues are 15. Stojkovska I, Krainc D, Mazzulli JR. Molecular mechanisms of
lower than those reported in Facts and Figures is that ADAMS, α-synuclein and GBA1 in Parkinson’s disease. Cell Tissue Res
with its diagnostic evaluations of everyone in the study, is 2018;373(1):51-60.
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with Alzheimer’s registered by MCBS are likely to be those cular dementia brains: A neuropathological study. Folia Neuropathol
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