DOI: 10.1002/alz.

12068

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

2020 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 future challenges of
meeting care demands for the growing number of people living with Alzheimer’s demen-
tia in the United States with a particular emphasis on primary care. By mid-century,
the number of Americans age 65 and older with Alzheimer’s dementia may grow to
13.8 million. This represents a steep increase from the estimated 5.8 million Ameri-
cans age 65 and older who have Alzheimer’s dementia today. Official death certificates
recorded 122,019 deaths from AD in 2018, the latest year for which data are avail-
able, 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
2018, deaths resulting from stroke, HIV and heart disease decreased, whereas reported
deaths from Alzheimer’s increased 146.2%. In 2019, more than 16 million family mem-
bers and other unpaid caregivers provided an estimated 18.6 billion hours of care to
people with Alzheimer’s or other dementias. This care is valued at nearly $244 billion,
but its costs extend to family caregivers’ increased risk for emotional distress and neg-
ative mental and physical health outcomes. 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 Medi-
caid payments are more than 23 times as great. Total payments in 2020 for health care,
long-term care and hospice services for people age 65 and older with dementia are esti-
mated to be $305 billion. As the population of Americans living with Alzheimer’s demen-
tia increases, the burden of caring for that population also increases. These challenges
are exacerbated by a shortage of dementia care specialists, which places an increasing
burden on primary care physicians (PCPs) to provide care for people living with demen-
tia. Many PCPs feel underprepared and inadequately trained to handle dementia care
responsibilities effectively. This report includes recommendations for maximizing qual-
ity care in the face of the shortage of specialists and training challenges in primary care.

KEYWORDS

Alzheimer’s disease, Alzheimer’s dementia, Alzheimer’s disease continuum, Biomarkers, Care-

givers, Dementia care training, Dementia, Family caregiver, Geriatrician, Health care professional,
Health care costs, Health care expenditures, Incidence, Long-term care costs, Medicare spending,
Medicaid spending, Mortality, Morbidity, Prevalence, Primary care physician, Risk factors, Spouse
caregiver

Alzheimer’s Dement. 2020;16:391–460. wileyonlinelibrary.com/journal/alz ○

c 2020 the Alzheimer’s Association 391
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1 ABOUT THIS REPORT occur because nerve cells (neurons) in parts of the brain involved in
thinking, learning and memory (cognitive function) have been damaged
2020 Alzheimer’s Disease Facts and Figures is a statistical resource for or destroyed. As the disease progresses, neurons in other parts of the
U.S. data related to Alzheimer’s disease, the most common cause of brain are damaged or destroyed. Eventually, nerve cells in parts of the
dementia. Background and context for interpretation of the data are brain that enable a person to carry out basic bodily functions, such as
contained in the Overview. Additional sections address prevalence, walking and swallowing, are affected. Individuals become bed-bound
mortality and morbidity, caregiving and use and costs of health care and and require around-the-clock care. Alzheimer’s disease is ultimately
services. A Special Report examines primary care physicians’ experi- fatal.
ences, exposure, training and attitudes in providing dementia care and
steps that can be taken to ensure their future readiness for a growing
number of Americans living with Alzheimer’s and other dementias. 2.1 Alzheimer’s disease or dementia?

Many people wonder what the difference is between Alzheimer’s dis-

1.1 Specific information in this report ease and dementia.
Dementia is an overall term for a particular group of symptoms. The
Specific information in this year’s Alzheimer’s Disease Facts and Figures characteristic symptoms of dementia are difficulties with memory, lan-
includes: guage, problem-solving and other thinking skills that affect a person’s
ability to perform everyday activities. Dementia has many causes (see
• Brain changes that occur with Alzheimer’s disease. Table 1). Alzheimer’s disease is the most common cause of dementia.
• Risk factors for Alzheimer’s dementia.
• Number of Americans with Alzheimer’s dementia nationally and for
each state. 2.2 Brain changes associated with Alzheimer’s
• Lifetime risk for developing Alzheimer’s dementia. disease
• Proportion of women and men with Alzheimer’s and other demen-
tias. A healthy adult brain has about 100 billion neurons, each with
• Number of deaths due to Alzheimer’s disease nationally and for each long, branching extensions. These extensions enable individual neu-
state, and death rates by age. rons to form connections with other neurons. At such connections,
• Number of family caregivers, hours of care provided, and economic called synapses, information flows in tiny bursts of chemicals that
value of unpaid care nationally and for each state. are released by one neuron and detected by another neuron. The
• The impact of caregiving on caregivers. brain contains about 100 trillion synapses. They allow signals to travel
• National cost of care for individuals with Alzheimer’s or other rapidly through the brain’s neuronal circuits, creating the cellular basis
dementias, including costs paid by Medicare and Medicaid and costs of memories, thoughts, sensations, emotions, movements and skills.
paid out of pocket. The accumulation of the protein fragment beta-amyloid (called
• Medicare payments for people with dementia compared with people beta-amyloid plaques) outside neurons and the accumulation of an
without dementia. abnormal form of the protein tau (called tau tangles) inside neurons are
• Number of geriatricians needed by state in 2050. two of several brain changes associated with Alzheimer’s.
Plaques and smaller accumulations of beta-amyloid called
The Appendices detail sources and methods used to derive statistics oligomers may contribute to the damage and death of neurons
in this report. (neurodegeneration) by interfering with neuron-to-neuron commu-
When possible, specific information about Alzheimer’s disease is nication at synapses. Tau tangles block the transport of nutrients
provided; in other cases, the reference may be a more general one of and other essential molecules inside neurons. Although the complete
“Alzheimer’s or other dementias.” sequence of events is unclear, beta-amyloid may begin accumulating
before abnormal tau, and increasing beta-amyloid accumulation is
associated with subsequent increases in tau.7,8
2 OVERVIEW OF ALZHEIMER’S DISEASE Other brain changes include inflammation and atrophy. The pres-
ence of toxic beta-amyloid and tau proteins are believed to activate
Alzheimer’s disease is a type of brain disease, just as coronary artery immune system cells in the brain called microglia. Microglia try to clear
disease is a type of heart disease. It is also a degenerative disease, the toxic proteins as well as widespread debris from dead and dying
meaning that it becomes worse with time. Alzheimer’s disease is cells. Chronic inflammation may set in when the microglia can’t keep
thought to begin 20 years or more before symptoms arise,1-6 with up with all that needs to be cleared. Atrophy, or shrinkage, of the
changes in the brain that are unnoticeable to the person affected. brain occurs because of cell loss. Normal brain function is further com-
Only after years of brain changes do individuals experience noticeable promised in Alzheimer’s disease by decreases in the brain’s ability to
symptoms such as memory loss and language problems. Symptoms metabolize glucose, its main fuel.
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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. 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
disease injured 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.9,10 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.
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 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 (called dementia with Lewy bodies or DLB) can result. People with DLB have
some of the symptoms common in Alzheimer’s, but are more likely to have initial or early symptoms of sleep
disturbances, well-formed visual hallucinations and 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 percent of people with FTLD are ages 45 to 60.11 Scientists think that
FTLD is the most common cause of dementia in people younger than 60.11 In a systematic review, FTLD accounts 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 65.12
Parkinson’s disease Problems with movement (slowness, rigidity, tremor and changes in gait) are common symptoms of PD. Cognitive
(PD) symptoms develop either just before movement symptoms or later in the disease.
In PD, alpha-synuclein aggregates appear in an area deep in the brain called the substantia nigra. The aggregates are
thought to cause degeneration of the nerve cells that produce dopamine.13
As PD progresses, it often results in dementia secondary to the accumulation of alpha-synuclein in the cortex (similar to
dementia with Lewy bodies).
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 Centers having pathologic evidence of more than one cause of
dementia.10 In community-based studies, the percentage of mixed dementia cases is considerably higher.9 The
likelihood of having mixed dementia increases with age and is highest in people age 85 or older.14,15
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FIGURE 1 Alzheimer’s disease (AD) continuum. *MCI is the acronym for mild cognitive impairment.

A study5 of people with rare genetic mutations that cause 2.3.1 Preclinical Alzheimer’s disease
Alzheimer’s found that levels of beta-amyloid in the brain were signif-
icantly increased starting 22 years before symptoms were expected In this phase, individuals have measurable brain changes that indicate
to develop (individuals with these genetic mutations usually develop the earliest signs of Alzheimer’s disease (biomarkers), but they have not
symptoms at the same or nearly the same age as their parent with yet developed symptoms such as memory loss. Examples of measur-
Alzheimer’s). Glucose metabolism began to decrease 18 years before able brain changes include abnormal levels of beta-amyloid as shown
expected symptom onset, and brain atrophy began 13 years before on positron emission tomography (PET) scans and in analysis of cere-
expected symptom onset. brospinal fluid (CSF), and decreased metabolism of glucose as shown
It is critical to note that while the field of Alzheimer’s research on PET scans. When the early changes of Alzheimer’s occur, the brain
has made great gains over the years in understanding the brain compensates for them, enabling individuals to continue to function
changes associated with the disease and how the disease progresses, normally.
much of the research to date has not included sufficient numbers of While research settings have the tools and expertise to identify
black/African Americans, Hispanics/Latinos, Asian Americans/Pacific some of the early brain changes of Alzheimer’s, additional research
Islanders and Native Americans to be representative of the U.S. popu- is needed to fine-tune the tools’ accuracy before they become avail-
lation. Moreover, because some studies16-19 find black/African Amer- able for widespread use in hospitals, doctors’ offices and other clinical
icans and Hispanics/Latinos to be at increased risk for Alzheimer’s, settings. It is important to note that not all individuals with evidence
the underrepresentation of these populations hampers the conduct of Alzheimer’s-related brain changes go on to develop symptoms of
of rigorous research to understand these health disparities. Addi- MCI or dementia due to Alzheimer’s.25,26 For example, some individ-
tional research involving individuals from underrepresented ethnic and uals have beta-amyloid plaques at death but did not have memory or
racial groups is necessary to gain a comprehensive understanding of thinking problems in life.
Alzheimer’s disease.

2.3.2 MCI due to Alzheimer’s disease

2.3 Alzheimer’s disease continuum
People with MCI due to Alzheimer’s disease have biomarker evidence
The progression of Alzheimer’s disease from brain changes that are of Alzheimer’s brain changes (for example, abnormal levels of beta-
unnoticeable to the person affected to brain changes that cause prob- amyloid) plus subtle problems with memory and thinking. These cogni-
lems with memory and eventually physical disability is called the tive problems may be noticeable to family members and friends, but not
Alzheimer’s disease continuum. to others, and they do not interfere with individuals’ ability to carry out
On this continuum, there are three broad phases: preclini- everyday activities. The mild changes in thinking abilities occur when
cal Alzheimer’s disease, mild cognitive impairment (MCI) due to the brain can no longer compensate for the damage and death of nerve
Alzheimer’s disease and dementia due to Alzheimer’s disease (see cells caused by Alzheimer’s disease.
Figure 1).20-23 The Alzheimer’s dementia phase is further broken down Among those with MCI, one analysis found that after 2 years’
into the stages of mild, moderate and severe, which reflect the degree follow-up, 15% of individuals older than 65 had developed dementia.27
to which symptoms interfere with one’s ability to carry out everyday Another study found that 32% of individuals with MCI developed
activities. Alzheimer’s dementia within 5 years’ follow-up.28 A third study found
While we know the continuum starts with preclinical Alzheimer’s that among individuals with MCI who were tracked for 5 years or
and ends with severe Alzheimer’s dementia, how long individuals spend longer, 38% developed dementia.29 However, in some individuals MCI
in each part of the continuum varies. The length of each phase of the reverts to normal cognition or remains stable. In other cases, such
continuum is influenced by age, genetics, gender and other factors.24 as when a medication inadvertently causes cognitive changes, MCI is
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mistakenly diagnosed and cognitive changes can be reversed with med- other degenerative brain diseases. Causes of dementia-like symptoms
ication changes. Identifying which individuals with MCI are more likely include depression, untreated sleep apnea, delirium, side effects of
to develop Alzheimer’s or other dementias is a major goal of current medications, Lyme disease, thyroid problems, certain vitamin deficien-
research. cies and excessive alcohol consumption. Unlike Alzheimer’s and other
dementias, these conditions often may be reversed with treatment.
Consulting a medical professional to determine the cause of symptoms
2.3.3 Dementia due to Alzheimer’s disease is critical to one’s physical and emotional well-being.
The differences between normal age-related cognitive changes and
Dementia due to Alzheimer’s disease is characterized by noticeable the cognitive changes of Alzheimer’s dementia can be subtle (see
memory, thinking or behavioral symptoms that impair a person’s abil- Table 2). People experiencing cognitive changes should seek medical
ity to function in daily life, along with evidence of Alzheimer’s-related help to determine if the changes are normal for one’s age, reversible or
brain changes. Individuals with Alzheimer’s dementia experience mul- a symptom of Alzheimer’s or another dementia. The Medicare Annual
tiple symptoms that change over a period of years. These symptoms Wellness Visit, which includes a cognitive evaluation, is an opportune
reflect the degree of damage to nerve cells in different parts of the time for individuals age 65 or older to discuss cognitive changes with
brain. The pace at which symptoms of dementia advance from mild to their physician.
moderate to severe differs from person to person.

Mild Alzheimer’s dementia 2.4 Diagnosis of dementia due to Alzheimer’s

In the mild stage of Alzheimer’s dementia, most people are able to func- disease
tion independently in many areas but are likely to require assistance
with some activities to maximize independence and remain safe. They There is no single test for dementia due to Alzheimer’s disease. Instead,
may still be able to drive, work and participate in favorite activities. physicians (often with the help of specialists such as neurologists, neu-
ropsychologists, geriatricians and geriatric psychiatrists) use a variety
Moderate Alzheimer’s dementia of approaches and tools to help make a diagnosis. They include the
In the moderate stage of Alzheimer’s dementia, which is often the following:
longest stage, individuals may have difficulties communicating and per-
forming routine tasks, including activities of daily living (such as bathing • Obtaining a medical and family history from the individual, including
and dressing); become incontinent at times; and start having personal- psychiatric history and history of cognitive and behavioral changes.
ity and behavioral changes, including suspiciousness and agitation. • Asking a family member to provide input about changes in thinking
skills and behavior.
Severe Alzheimer’s dementia • Conducting problem-solving, memory and other cognitive tests, as
In the severe stage of Alzheimer’s dementia, individuals need help well as physical and neurologic examinations.
with activities of daily living and are likely to require around-the-clock • Having the individual undergo blood tests and brain imaging to rule
care. The effects of Alzheimer’s disease on individuals’ physical health out other potential causes of dementia symptoms, such as a tumor
become especially apparent in this stage. Because of damage to areas or certain vitamin deficiencies.
of the brain involved in movement, individuals become bed-bound. • In some circumstances, using PET imaging of the brain to find
Being bed-bound makes them vulnerable to conditions including blood out if the individual has high levels of beta-amyloid, a hallmark of
clots, skin infections and sepsis, which triggers body-wide inflamma- Alzheimer’s; normal levels would suggest Alzheimer’s is not the
tion that can result in organ failure. Damage to areas of the brain that cause of dementia.30
control swallowing makes it difficult to eat and drink. This can result in • In some circumstances, using lumbar puncture to determine the lev-
individuals swallowing food into the trachea (windpipe) instead of the els of beta-amyloid and certain types of tau in CSF; normal levels
esophagus (food pipe). Because of this, food particles may be deposited would suggest Alzheimer’s is not the cause of dementia.31
in the lungs and cause lung infection. This type of infection is called
aspiration pneumonia, and it is a contributing cause of death among Although physicians can almost always determine if a person has
many individuals with Alzheimer’s (see Mortality and Morbidity sec- dementia, it may be difficult to identify the exact cause. Alzheimer’s
tion). disease is the most common cause of dementia, but there are other
causes as well.32,33 As shown in Table 1, different causes of dementia
are associated with distinct symptom patterns and brain abnormalities.
2.3.4 When dementia-like symptoms are not Many people with dementia have brain changes associated with more
dementia than one cause of dementia.9,34-38 This is called mixed dementia. Some
studies9,10 report that the majority of people with the brain changes of
It is important to note that some individuals have dementia-like Alzheimer’s also have the brain changes of a second cause of dementia
symptoms without the progressive brain changes of Alzheimer’s or on autopsy.
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TA B L E 2 Signs of Alzheimer’s or Other Dementias Compared with Typical Age-Related Changes*

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

Memory loss that disrupts daily life: One of the most common signs of Alzheimer’s is Sometimes forgetting names or appointments, but
memory loss, especially forgetting recently learned information. Others include remembering them later.
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 put Misplacing things from time to time and retracing
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
themselves from hobbies, social activities, work projects or sports. They may have social 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/10signs.

As discussed in the Prevalence section, many individuals who would 2.5 Treatment of Alzheimer’s dementia
meet the diagnostic criteria for Alzheimer’s and other dementias are
not diagnosed by a physician,39-42 and fewer than half of Medicare ben- 2.5.1 Pharmacologic treatment
eficiaries who have a diagnosis of Alzheimer’s or another dementia in
their Medicare billing records report (or their caregiver reports, if the None of the pharmacologic treatments (medications) available today
beneficiary’s cognitive impairment prevented him or her from respond- for Alzheimer’s dementia slow or stop the damage and destruction
ing) being told of the diagnosis.43-46 It is important that individuals who of neurons that cause Alzheimer’s symptoms and make the disease
are living with dementia receive a diagnosis and are aware of the diag- fatal. The U.S. Food and Drug Administration (FDA) has approved five
nosis. It is also important that individuals receive an accurate diagnosis drugs for the treatment of Alzheimer’s — rivastigmine, galantamine,
to ensure they receive treatment or follow-up care appropriate to their donepezil, memantine, and memantine combined with donepezil.
specific cause of dementia. With the exception of memantine, these drugs temporarily improve
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cognitive symptoms by increasing the amount of chemicals called neu- non-pharmacologic therapies include computerized memory training,
rotransmitters in the brain. Memantine blocks certain receptors in the listening to favorite music as a way to stir recall, and using special light-
brain from excess stimulation that can damage nerve cells. The effec- ing to lessen sleep disorders. As with current pharmacologic thera-
tiveness of these drugs varies from person to person and is limited in pies, non-pharmacologic therapies do not slow or stop the damage and
duration. destruction of neurons that cause Alzheimer’s symptoms and make the
No drugs are specifically approved by the FDA to treat behav- disease fatal.
ioral and psychiatric symptoms that may develop in the moderate and Determining the effectiveness of non-pharmacologic therapies can
severe stages of Alzheimer’s dementia. If non-pharmacologic therapy be difficult because of the large number of unique therapies tested;
is not successful and these symptoms have the potential to cause the diversity of therapeutic aims (from improved overall quality of life
harm to the individual or others, physicians may prescribe medications to improvements in specific symptoms); the diverse dementia stages
approved for similar symptoms in people with other conditions. A type represented (from mild to moderate to severe); the diverse types of
of medication called antipsychotics may be prescribed to treat hallu- dementia that may be present among participants in a particular study
cinations, aggression and agitation. However, research has shown that given the pervasiveness of mixed dementia; and the lack of a standard
some antipsychotics are associated with an increased risk of stroke and method for carrying out any individual therapy. With these multiple
death in individuals with dementia.47,48 The decision to use antipsy- factors to consider, it is challenging to group together and compare
chotics must be considered with extreme caution. The FDA has ordered non-pharmacologic therapies.
manufacturers to label such drugs with a “black box warning” about Nevertheless, researchers have pooled data from multiple studies
their risks and a reminder that they are not approved to treat dementia of non-pharmacologic therapies to provide insight into their potential
symptoms. effectiveness.
Many factors contribute to the difficulty of developing effective
treatments for Alzheimer’s. These factors include the slow pace of • A meta-analysis52 found that aerobic exercise and a combination of
recruiting sufficient numbers of participants and sufficiently diverse aerobic and non-aerobic exercise had positive effects on cognitive
participants to clinical studies, gaps in knowledge about the precise function in people living with Alzheimer’s dementia. A systematic
molecular changes and biological processes in the brain that cause review53 found that exercise has a positive effect on overall cogni-
Alzheimer’s disease, and the relatively long time needed to observe tive function and may slow the rate of cognitive decline in people
whether an investigational treatment affects disease progression. with Alzheimer’s dementia.
Researchers believe that future treatments to slow or stop the • A systematic review54 found that cognitive stimulation had bene-
progression of Alzheimer’s disease and preserve brain function may ficial effects on cognitive function and some aspects of well-being
be most effective when administered early in the disease continuum, in people with Alzheimer’s dementia. Another systematic review55
either at the MCI due to Alzheimer’s or preclinical Alzheimer’s phase. reported that cognitive stimulation was associated with improved
Biomarker tests will be essential to identify which individuals are in scores on tests of depression in people with mild-to-moderate
these phases of the continuum and should receive treatments when Alzheimer’s dementia. A 2019 summary56 of systematic reviews
they are available. Biomarkers also will be critical for monitoring the reported that cognitive stimulation, music-based therapies and psy-
effects of treatment. Biomarker tests are already playing an important chological treatment (for example, cognitive behavioral therapy)
role in drug development because they enable researchers to recruit improved depression, anxiety and quality of life in people with
into clinical trials only those individuals with the Alzheimer’s brain dementia.
changes that a drug has been designed to affect.49 The most effective • A 2019 summary of systematic reviews57 of cognitive training for
biomarker test or combination of tests may differ depending on where people with mild-to-moderate dementia found cognitive training
the individual is on the disease continuum and other factors.50 may show some benefits in overall cognition that may last for at least
a few months.

2.5.2 Non-pharmacologic therapy

2.6 Active management of Alzheimer’s dementia
Non-pharmacologic therapies are those that do not involve medication.
They are often used for people with Alzheimer’s dementia with the goal Studies have consistently shown that active management of
of maintaining or improving cognitive function, overall quality of life or Alzheimer’s and other dementias can improve the quality of life
the ability to perform activities of daily living. They also may be used of affected individuals and their caregivers.58-60 Active management
with the goal of reducing behavioral symptoms such as depression, apa- includes:
thy, wandering, sleep disturbances, agitation and aggression. A recent
review and analysis of non-pharmacologic treatments for agitation and • Appropriate use of available treatment options.
aggression in people with dementia concluded that non-pharmacologic • Effective management of coexisting conditions.
interventions seemed to be more effective than pharmacologic • Providing family caregivers with effective training in managing the
interventions for reducing aggression and agitation.51 Examples of day-to-day life of the care recipient.
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• Coordination of care among physicians, other health care profes- TA B L E 3 Percentage of Blacks/African Americans and European
sionals and lay caregivers. Americans with Specified APOE Pairs
• Participation in activities that are meaningful to the individual with APOE Blacks/African European
dementia and bring purpose to his or her life. Pair Americans* Americans
• Having opportunities to connect with others living with dementia; e3/e3 45.2 63.4
support groups and supportive services are examples of such oppor- e3/e4 28.6 21.4
tunities. e3/e2 15.1 10.2
• Becoming educated about the disease. e2/e4 5.7 2.4
• Planning for the future. e4/e4 4.5 2.4
e2/e2 0.7 0.2
To learn more about Alzheimer’s disease, as well as practical infor-
Created from data from Rajan et al.70
mation for living with Alzheimer’s and being a caregiver, visit alz.org. ∗
Percentages do not total 100 due to rounding

inherit one copy of the e4 form have about three times the risk of devel-
2.7 Risk factors for Alzheimer’s dementia oping Alzheimer’s compared with those with two copies of the e3 form,
while those who inherit two copies of the e4 form have an eight- to 12-
The vast majority of people who develop Alzheimer’s dementia are age fold risk.73-75 In addition, those with the e4 form are more likely to have
65 or older. This is called late-onset Alzheimer’s. Experts believe that beta-amyloid accumulation76 and Alzheimer’s dementia at a younger
Alzheimer’s, like other common chronic diseases, develops as a result age than those with the e2 or e3 forms of the APOE gene.77 A meta-
of multiple factors rather than a single cause. Exceptions are cases of analysis including 20 published articles describing the frequency of the
Alzheimer’s related to uncommon genetic changes that increase risk. e4 form among people in the United States who had been diagnosed
with Alzheimer’s found that 56% had one copy of the APOE-e4 gene,
and 11% had two copies of the APOE-e4 gene.78 Another study found
2.7.1 Age, genetics and family history that among 1,770 diagnosed individuals from 26 Alzheimer’s Disease
Centers across the United States, 65% had at least one copy of the
The greatest risk factors for late-onset Alzheimer’s are older age,61,62 APOE-e4 gene.79
genetics63,64 and having a family history of Alzheimer’s.65-68 However, studies of Alzheimer’s risk based on APOE status among
black/African Americans have had inconsistent results. For example,
Age some have found that having the e4 allele did not increase risk among
Age is the greatest of these three risk factors. As noted in the Preva- black/African Americans,71,72,80 while other studies have found that
lence section, the percentage of people with Alzheimer’s dementia it significantly increased risk.81,82 More research is needed to better
increases dramatically with age: 3% of people age 65-74, 17% of peo- understand the genetic mechanisms involved in Alzheimer’s risk among
ple age 75-84 and 32% of people age 85 or older have Alzheimer’s different racial and ethnic groups.
dementia.62 It is important to note that Alzheimer’s dementia is not a
normal part of aging,69 and older age alone is not sufficient to cause Family history
Alzheimer’s dementia. A family history of Alzheimer’s is not necessary for an individual to
develop the disease. However, individuals who have a parent or sib-
Genetics ling (first-degree relative) with Alzheimer’s dementia are more likely
Researchers have found several genes that increase the risk of to develop the disease than those who do not have a first-degree rela-
Alzheimer’s. The apolipoprotein-e4 (APOE-e4) gene is the gene with tive with Alzheimer’s.65,73 Those who have more than one first-degree
the strongest impact on risk of late-onset Alzheimer’s. APOE-e4 pro- relative with Alzheimer’s are at even higher risk.68 A large, population-
vides the blueprint for a protein that transports cholesterol in the based study found that having a parent with dementia increases risk
bloodstream. Everyone inherits one of three forms (alleles) of the independent of known genetic risk factors such as APOE-e4.83 When
APOE gene — e2, e3 or e4 — from each parent, resulting in six possible diseases run in families, heredity (genetics) and shared non-genetic fac-
APOE pairs: e2/e2, e2/e3, e2/e4, e3/e3, e3/e4 and e4/e4. Researchers tors (for example, access to healthy foods and habits related to physical
have found differences in the frequency of these pairs in different racial activity) may play a role.
and ethnic groups. For example, data show that a higher percentage of
black/African Americans than European Americans have at least one
copy of the e4 allele (see Table 3).70-72 2.7.2 Modifiable risk factors
Having the e4 form of APOE increases one’s risk of developing
Alzheimer’s compared with having the e3 form, but does not guaran- Although age, genetics and family history cannot be changed, other
tee that an individual will develop Alzheimer’s. Having the e2 form risk factors can be changed or modified to reduce the risk of cognitive
may decrease one’s risk compared with having the e3 form. Those who decline and dementia.
 399

In 2019, the World Health Organization (WHO) published decrease the occurrence of MCI and dementia in older adults who have
recommendations84 to reduce risk of cognitive decline and dementia. hypertension.114
WHO strongly recommends physical activity, quitting smoking, and Building on the connection between heart health and brain health,
managing hypertension and diabetes to reduce the risk of cognitive researchers have found that factors that protect the heart may also
decline and dementia. A report85 evaluating the state of the evidence protect the brain and reduce the risk of developing Alzheimer’s or
on the effects of modifiable risk factors on cognitive decline and other dementias. Physical activity115-125 appears to be one of these
dementia concluded that there is sufficiently strong evidence, from a factors. Although researchers have studied a wide variety of exercises,
population-based perspective, that regular physical activity and man- they do not yet know which specific types of exercises, what frequency
agement of cardiovascular risk factors (especially diabetes, obesity, of exercise or what duration of activity may be most effective in reduc-
smoking and hypertension) is associated with reduced risk of cognitive ing risk. In addition to physical activity, emerging evidence suggests
decline and may be associated with reduced risk of dementia. It also that consuming a heart-healthy diet may be associated with reduced
concluded that there is sufficiently strong evidence that a healthy diet, dementia risk.126-130 A heart-healthy diet emphasizes fruits, vegeta-
lifelong learning and cognitive training are associated with reduced bles, whole grains, fish, chicken, nuts and legumes while limiting sat-
risk of cognitive decline. A report from the National Academy of urated fats, red meat and sugar. A systematic review131 of the use of
Medicine (formerly the Institute of Medicine) examined the evidence supplements, including (but not limited to) vitamins C, D and E, omega-
regarding modifiable risk factors for cognitive decline and reached 3 fatty acids, and ginkgo biloba, found little to no benefit in preventing
similar conclusions.86 More research is needed to understand the cognitive decline, MCI or Alzheimer’s dementia.
biological mechanisms by which these factors reduce risk. Researchers have begun studying combinations of health factors
It is important to note that “reducing risk” of cognitive decline and lifestyle behaviors (for example, blood pressure as a health factor
and dementia is not synonymous with preventing cognitive decline and physical activity as a lifestyle behavior) to learn whether combi-
and dementia. Individuals who take measures to reduce risk may still nations of risk factors better identify Alzheimer’s and dementia risk
develop dementia, but may be less likely to develop it, or may develop than individual risk factors. They are also studying whether interven-
it later in life than they would have if they had not taken steps to ing on multiple risk factors simultaneously is more effective at reduc-
reduce their risk. It is also important to note that factors that increase ing risk than addressing a single risk factor. Indeed, one such study,132
or decrease the risk of cognitive decline and dementia may not nec- the Finnish Geriatric Intervention Study to Prevent Cognitive Impair-
essarily do so by directly affecting the brain changes associated with ment and Disability (FINGER), found that a multidomain lifestyle inter-
Alzheimer’s disease.80 For example, it is possible that smoking may con- vention was associated with beneficial effects on cognitive function in
tribute to cerebrovascular disease, which in turn increases the risk of older adults at high risk for cognitive decline and dementia. The suc-
dementia, but it may not directly contribute to the development of the cess of FINGER has led to the launch of multidomain lifestyle interven-
amyloid plaques and tau tangles that characterize Alzheimer’s disease. tion studies in other countries, including the Alzheimer’s Association
U.S. Study to Protect Brain Health Through Lifestyle Intervention to
Cardiovascular disease risk factors Reduce Risk (U.S. POINTER).133
Brain health is affected by the health of the heart and blood vessels.
Although it makes up just 2% of body weight, the brain consumes 20% Education
of the body’s oxygen and energy supplies.87 A healthy heart ensures People with more years of formal education are at lower risk for
that enough blood is pumped to the brain, while healthy blood vessels Alzheimer’s and other dementias than those with fewer years of for-
enable the oxygen- and nutrient-rich blood to reach the brain so it can mal education.71,134-138 Some researchers believe that having more
function normally. years of education builds “cognitive reserve.” Cognitive reserve refers
Many factors that increase the risk of cardiovascular disease to the brain’s ability to make flexible and efficient use of cognitive net-
are also associated with a higher risk of dementia.88 These fac- works (networks of neuron-to-neuron connections) to enable a person
tors include smoking89-93 and diabetes.94-97 Some studies propose to continue to carry out cognitive tasks despite brain changes139,140
that impaired glucose processing (a precursor to diabetes) may also such as beta-amyloid and tau accumulation. The number of years of for-
result in an increased risk for dementia.98-100 The age at which some mal education is not the only determinant of cognitive reserve. Having
risk factors develop appears to affect dementia risk. For example, a mentally stimulating job and engaging in other mentally stimulating
midlife obesity,98,101-104 hypertension,98,105-109 prehypertension (sys- activities may also help build cognitive reserve.141-144
tolic blood pressure from 120 to 139 mm Hg or diastolic pressure A recent study145 found that individuals with the APOE-e4 risk gene
from 80 to 89 mm Hg)109 and high cholesterol110,111 are associated had a decreased risk of developing dementia if they had more years of
with an increased risk of dementia. However, late-life obesity112 and early life education, had mentally challenging work in midlife, partici-
hypertension onset after age 80113 are associated with decreased pated in leisure activities in late life, and/or had strong social networks
risk of dementia. More research is needed to understand why the in late life.
effects of some modifiable risk factors may change with age. Regarding It is important to note that the underlying reason for the rela-
blood pressure, there is now evidence from a large-scale clinical trial tionship between formal education and reduced Alzheimer’s risk is
that intensive medical treatment to reduce blood pressure may safely unclear. It is possible that the generally higher socioeconomic status of
400

individuals with more years of formal education is a protective fac- • Moderate TBI is characterized by loss of consciousness or post-
tor. Having fewer years of formal education is associated with lower traumatic amnesia lasting more than 30 minutes but less than 24
socioeconomic status,146 which may: hours, or an initial Glasgow score of 9-12.
• Severe TBI is characterized by loss of consciousness or post-
• Increase one’s likelihood of experiencing poor nutrition. traumatic amnesia lasting 24 hours or more, or an initial Glasgow
• Decrease one’s ability to afford health care or medical treatments, score of 8 or less.
such as treatments for cardiovascular disease risk factors that are
so closely linked to brain health. The risk of dementia increases with the number of TBIs
• Limit one’s access to physically safe housing and employment, sustained.168 Even those who experience mild TBI are at increased risk
which could increase risk of being exposed to substances that are of dementia compared with those who have not had a TBI. A recent
toxic to the nervous system such as air pollution,147 lead148 and study found that mild TBI is associated with a two-fold increase in the
pesticides.149 risk of dementia diagnosis.173 Another study found that people with
a history of TBI who develop Alzheimer’s do so at a younger age than
In addition, people with fewer years of education tend to have more those without a history of TBI.174 Whether TBI causes Alzheimer’s
cardiovascular risk factors for Alzheimer’s, including being less physi- disease, other conditions that lead to dementia, or both, is still being
cally active,150 having a higher risk of diabetes,151-153 and being more investigated.
likely to have hypertension154 and to smoke.155 Chronic traumatic encephalopathy (CTE) is a neuropathologic diag-
nosis (meaning it is characterized by brain changes that can only be
Social and cognitive engagement identified at autopsy) associated with repeated blows to the head, such
Additional studies suggest that remaining socially and mentally active as those that may occur while playing contact sports. Among former
throughout life may support brain health and possibly reduce the risk amateur and professional football players, the risk of developing CTE,
of Alzheimer’s and other dementias.116,156-167 Remaining socially and which is associated with dementia, increases 30% per year played.175
mentally active might help build cognitive reserve, but the exact mech- Currently, there is no test to determine if someone has CTE-related
anism by which this may occur is unknown. It is possible that the associ- brain changes during life. A review article indicates that the greatest
ation observed between social and cognitive engagement and reduced risk factor for developing CTE-related brain changes is repetitive brain
dementia risk reflects something else. Specifically, the presence of cog- trauma — repeated, forceful blows to the head that do not, individually,
nitive impairment could decrease one’s interest in and ability to par- result in symptoms.176 Like Alzheimer’s disease, CTE is characterized
ticipate in activities involving social and cognitive skills. Therefore, the by tangles of an abnormal form of the protein tau in the brain. Unlike
association may reflect the effect of cognitive impairment on social and Alzheimer’s, beta-amyloid plaques are uncommon in CTE.177,178 How
cognitive engagement rather than the effect of engagement on demen- the brain changes associated with CTE are linked to cognitive or behav-
tia risk. More research is needed to better understand how social and ioral changes is unclear.
cognitive engagement may affect biological processes that influence
risk.
2.7.3 Uncommon genetic changes that increase
Traumatic brain injury (TBI) risk
TBI is the disruption of normal brain function caused by a blow or jolt
to the head or penetration of the skull by a foreign object. TBI increases Certain genetic mutations and the extra copy of chromosome 21 that
the risk of dementia.168 characterizes Down syndrome are uncommon genetic factors that
According to the Centers for Disease Control and Prevention strongly influence Alzheimer’s risk.
(CDC), approximately 2.87 million TBI-related emergency department
visits, hospitalizations and deaths occurred in 2014, the latest year Genetic mutations
for which information is available.169 The leading causes of TBI that A small percentage of Alzheimer’s cases (an estimated 1% or less)179
resulted in emergency department visits were falls, being struck by an develop as a result of mutations to any of three specific genes. A genetic
object and motor vehicle crashes.169 mutation is an abnormal change in the sequence of chemical pairs that
Two ways to classify the severity of TBI are by the duration of loss make up genes. These mutations involve the gene for the amyloid pre-
of consciousness or post-traumatic amnesia170 and by the individual’s cursor protein (APP) and the genes for the presenilin 1 and presenilin 2
initial score on the 15-point Glasgow Coma Scale.171 proteins. Those inheriting an Alzheimer’s mutation to these genes are
virtually guaranteed to develop the disease if they live a normal life
• Mild TBI (also known as a concussion) is characterized by loss of con- span.180 Symptoms tend to develop before age 65, sometimes as young
sciousness or post-traumatic amnesia lasting 30 minutes or less, or as age 30, while the vast majority of individuals with Alzheimer’s have
an initial Glasgow score of 13-15; about 75% of TBIs are mild.172 late-onset Alzheimer’s,
 401

Trisomy in Down syndrome

In Down syndrome, an individual is born with three copies of chromo-
some 21 (called trisomy 21) instead of two. People with Down syn-
drome have an increased risk of developing Alzheimer’s, and this is
believed to be related to trisomy 21. Chromosome 21 includes the
gene that encodes for the production of APP, which in people with
Alzheimer’s is cut into beta-amyloid fragments that accumulate into
plaques. Having an extra copy of chromosome 21 may increase the pro-
duction of beta-amyloid fragments in the brain.
Overall, people with Down syndrome develop Alzheimer’s at an
earlier age than people without Down syndrome. By age 40, most
people with Down syndrome have significant levels of beta-amyloid
plaques and tau tangles in their brains.181 As with all adults, advanc- F I G U R E 2 Number and ages of people 65 or older with Alzheimer’s
ing age increases the likelihood that a person with Down syndrome dementia, 2020. Created from data from Hebert et al.A2,62
will exhibit symptoms of Alzheimer’s. According to the National Down
Syndrome Society, about 30% of people with Down syndrome who
are in their 50s have Alzheimer’s dementia.58 About 50% of peo-
tion has already begun to reach age 65 and beyond,185 the age range of
ple with Down syndrome who are in their 60s have Alzheimer’s
greatest risk of Alzheimer’s dementia186 ; in fact, the oldest members
dementia.182
of the baby boom generation turn age 74 in 2020.
This section reports on the number and proportion of people with
Alzheimer’s dementia to describe the magnitude of the burden of
2.8 Looking to the future
Alzheimer’s on the community and health care system. The preva-
lence of Alzheimer’s dementia refers to the number and proportion
The identification of biomarkers for Alzheimer’s enables early detec-
of people in a population who have Alzheimer’s dementia at a given
tion of the disease and will accelerate the development of new ther-
point in time. Incidence refers to the number or rate of new cases per
apies by ensuring that appropriate people are enrolled in clinical trials.
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. In the future, more will
section.
be understood about which therapies will be most effective at which
points in the Alzheimer’s disease continuum.
A fuller understanding of Alzheimer’s — from its causes to how
3.1 Prevalence of Alzheimer’s and other dementias
to prevent it, how to manage it and how to treat it — depends on
in the United States
other crucial factors. Among these factors is the inclusion of partici-
pants from diverse racial and ethnic groups in all realms of Alzheimer’s
An estimated 5.8 million Americans age 65 and older are living with
research. Consistent with studies of other top 10 causes of death,
Alzheimer’s dementia in 2020.A1,62 Eighty percent are age 75 or older
studies of Alzheimer’s disease in underrepresented ethnic and racial
(Figure 2).A2,62
groups are relatively sparse. This reflects the urgent need for cur-
Out of the total U.S. population:
rent and future research to include increased numbers of black/African
Americans, Hispanics/Latinos, Asian Americans/Pacific Islanders and
• One in 10 people (10%) age 65 and older has Alzheimer’s
Native Americans in clinical trials, observational studies and other
dementia.A3,62,184
investigations so everyone benefits from advances in Alzheimer’s
• The percentage of people with Alzheimer’s dementia increases with
science.
age: 3% of people age 65-74, 17% of people age 75-84, and 32%
of people age 85 and older have Alzheimer’s dementia.62 People
younger than 65 can also develop Alzheimer’s dementia, but it is
3 PREVALENCE
much less common and prevalence is uncertain.

Millions of Americans have Alzheimer’s or other dementias. As the size The estimated number of people age 65 and older with Alzheimer’s
of the U.S. population age 65 and older continues to increase, the num- dementia comes from a study using the latest data from the 2010
ber of Americans with Alzheimer’s or other dementias will grow. Both U.S. Census and the Chicago Health and Aging Project (CHAP), a
the number and proportion will escalate rapidly in coming years, as the population-based study of chronic health conditions of older people.62
population of Americans age 65 and older is projected to grow from 56 National estimates of the prevalence of all dementias are not avail-
million in 2020 to 88 million by 2050.183,184 The baby boom genera- able from CHAP, but they are available from other population-based
402

studies including the Aging, Demographics, and Memory Study Association found that only one in three older adults were aware that
(ADAMS), a nationally representative sample of older adults.A4,187,188 these visits should include a cognitive assessment.194 Furthermore,
Based on estimates from ADAMS, 14% of people age 71 and older in while 82% of older adults believe it is important to have their memory
the United States have dementia.187 and thinking checked, only 16% report having their memory and think-
These estimates refer to people who have Alzheimer’s dementia ing checked. Most (93%) older adults said they trust their doctor to rec-
based on symptoms such as memory loss and difficulty planning or ommend testing for memory and thinking problems; however, despite
solving problems. Biomarker-based prevalence estimates could sig- 94% of primary care physicians stating that it is important to assess all
nificantly affect the reported number of people with Alzheimer’s older patients for cognitive impairment, fewer than half (47%) say it
disease.189,190 The estimated 5.8 million people with Alzheimer’s is their standard protocol to do so. The primary reasons given by sur-
dementia would be lower, but the total number of people in the con- veyed physicians for not assessing older patients for cognitive impair-
tinuum of Alzheimer’s disease would be higher. ment are the patient presents with no symptoms or complaints (68%)
Some individuals now counted as having Alzheimer’s dementia may and lack of time (58%).
not have the biological brain changes associated with Alzheimer’s dis-
ease because their diagnosis was based on clinical symptoms rather
than confirmed by biomarkers. Both autopsy studies and clinical tri- 3.1.2 Prevalence of subjective cognitive decline
als have found that 15% to 30% of individuals who met the criteria for
Alzheimer’s dementia based on symptoms did not have the required The experience of worsening or more frequent confusion or memory
Alzheimer’s-related brain changes at death.9,69,191-193 That is, these loss (often referred to as subjective cognitive decline) is one of the ear-
individuals had dementia caused by something other than Alzheimer’s liest warning signs of Alzheimer’s disease and may be a way to iden-
disease. tify people who are at high risk of developing Alzheimer’s or other
At the same time, a biomarker-based prevalence estimate would dementias as well as MCI.195-199 Subjective cognitive decline refers
comprise people throughout the continuum of Alzheimer’s dis- to self-perceived worsening of memory and other thinking abilities
ease, including those with mild cognitive impairment (MCI) due to by an individual, separate from cognitive testing, clinical diagnosis or
Alzheimer’s disease and preclinical Alzheimer’s disease who are not anyone else noticing. There is a correlation between subjective cog-
counted in current Alzheimer’s prevalence estimates, which are limited nitive decline and worse performance on cognitive tests, as recently
to those with Alzheimer’s dementia. reported using data from the National Health and Nutrition Examina-
tion Survey, a nationally representative sample of U.S. older adults.200
Not all of those who experience subjective cognitive decline go on to
3.1.1 Underdiagnosis of Alzheimer’s and other develop MCI or dementia, but many do.201-203 One study showed those
dementias in the primary care setting who over time consistently reported subjective cognitive decline that
they found worrisome were at higher risk for developing Alzheimer’s
Prevalence studies such as CHAP and ADAMS are designed so that dementia.204 The Behavioral Risk Factor Surveillance System survey,
everyone in the study undergoes evaluation for dementia. But out- which includes questions on subjective cognitive decline, found that
side of research settings, a substantial portion of those who would in the United States, 11% of Americans age 45 and older reported
meet the diagnostic criteria for Alzheimer’s and other dementias are subjective cognitive decline, but 54% of those who reported it had not
not diagnosed with dementia by a physician.39-42 Furthermore, fewer consulted a health care professional.205 Individuals concerned about
than half of Medicare beneficiaries who have a diagnosis of Alzheimer’s declines in memory and other cognitive abilities should consult a health
or another dementia in their Medicare billing records (or their care- care professional.
giver, if the beneficiary’s cognitive impairment prevented him or her
from responding) report being told of the diagnosis.43-46 Because
Alzheimer’s dementia is often underdiagnosed — and if it is diagnosed, 3.2 Estimates of the number of people with
people are often unaware of their diagnosis — a large portion of Ameri- Alzheimer’s dementia by state
cans with Alzheimer’s may not know they have it. A recent survey194 by
the Alzheimer’s Association found that on average, primary care physi- Table 4 lists the estimated number of people age 65 and older with
cians inform their patients 92% of the time when cognitive impairment Alzheimer’s dementia by state for 2020, the projected number for
is detected, and 64% of the physicians reported they always inform 2025, and the projected percentage change in the number of people
patients. Of the 36% of surveyed physicians who do not always inform with Alzheimer’s between 2020 and 2025.A5,206
their patients, 73% say it is because it is premature to do so before a full As shown in Figure 3, between 2020 and 2025 every state across
diagnostic workup, and 41% say brief cognitive assessments have high the country is expected to experience an increase of at least 6.7% in
rates of false positives or false negatives. the number of people with Alzheimer’s. These projected increases in
Since 2011, the Medicare Annual Wellness Visit has included a the number of people with Alzheimer’s are due solely to projected
required cognitive evaluation. The same survey by the Alzheimer’s increases in the population age 65 and older in these states. Because
 403

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
District of Columbia 8.9 9 1.1 Texas 400 490 22.5
Alabama 96 110 14.6 Utah 34 42 23.5
Alaska 8.5 11 29.4 Vermont 13 17 30.8
Arizona 150 200 33.3 Virginia 150 190 26.7
Arkansas 58 67 15.5 Washington 120 140 16.7
California 690 840 21.7 West Virginia 39 44 12.8
Colorado 76 92 21.1 Wisconsin 120 130 8.3
Connecticut 80 91 13.8 Wyoming 10 13 30.0
Delaware 19 23 21.1
Created from data provided to the Alzheimer’s Association by Weuve
Florida 580 720 24.1 et al.A5,206
Georgia 150 190 26.7
Hawaii 29 35 20.7 risk factors for dementia such as midlife obesity and diabetes can
Idaho 27 33 22.2 vary dramatically by region and state, the regional patterns of future
Illinois 230 260 13.0 burden may be different than reported here. Based on these projec-
Indiana 110 130 18.2 tions, the West and Southeast are expected to experience the largest
Iowa 66 73 10.6 percentage increases in people with Alzheimer’s dementia between
Kansas 55 62 12.7 2020 and 2025. These increases will have a marked impact on states’
Kentucky 75 86 14.7 health care systems, as well as the Medicaid program, which covers

Louisiana 92 110 19.6 the costs of long-term care and support for many older residents with
dementia, including more than a quarter of Medicare beneficiaries with
Maine 29 35 20.7
Alzheimer’s or other dementias.207
Maryland 110 130 18.2
Massachusetts 130 150 15.4
Michigan 190 220 15.8
3.3 Incidence of Alzheimer’s dementia
Minnesota 99 120 21.2
Mississippi 57 65 14.0 While prevalence refers to existing cases of a disease in a popula-
Missouri 120 130 8.3 tion at a given time, incidence refers to new cases of a disease that
Montana 22 27 22.7 develop in a given period of time in a defined population — in this
Nebraska 35 40 14.3 case, the U.S. population age 65 or older. Incidence provides a mea-
Nevada 49 64 30.6 sure of risk for developing a disease. According to one study using
New Hampshire 26 32 23.1 data from the Established Populations for Epidemiologic Study of the
New Jersey 190 210 10.5 Elderly, approximately 491,000 people age 65 or older will develop

New Mexico 43 53 23.3 Alzheimer’s dementia in the United States in 2020.208 Other studies
have arrived at incidence estimates that are much higher. For example,
New York 410 460 12.2
according to CHAP estimates, approximately 910,000 people age 65
North Carolina 180 210 16.7
or older developed Alzheimer’s dementia in the United States in 2011,
North Dakota 15 16 6.7
a number that would be expected to be even higher in 2020 if CHAP
Ohio 220 250 13.6
estimates were available for that year.209 A study using data from the
Oklahoma 67 76 13.4
Adult Changes in Thought study, a cohort of members of Kaiser Per-
Oregon 69 84 21.7 manente (formerly Group Health), a health care delivery system in the
Pennsylvania 280 320 14.3 Northwest United States, reported similar incidence rates to the CHAP
Rhode Island 24 27 12.5 study.210 The number of new cases of Alzheimer’s increases dramati-
South Carolina 95 120 26.3 cally with age: according to estimates from CHAP, in 2011 the average
South Dakota 18 20 11.1 annual incidence in people age 65-74 was 0.4% (meaning four of every
(Continues) 1,000 people age 65-74 developed Alzheimer’s dementia in 2011); in
people age 75-84, the annual incidence was 3.2% (32 of every 1,000
404

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.A5,206

people); and for age 85 and older (the “oldest-old”), the incidence was 3.5 Differences between women and men in the
7.6% (76 of every 1,000 people).209 Because of the increasing number prevalence and risk of Alzheimer’s and other
of people age 65 and older in the United States, particularly the oldest- dementias
old, the annual number of new cases of Alzheimer’s and other demen-
tias is projected to double by 2050.208 More women than men have Alzheimer’s or other dementias. Almost
two-thirds of Americans with Alzheimer’s are women.A7,62 Of the 5.8
million people age 65 and older with Alzheimer’s in the United States,
3.4 Lifetime risk of Alzheimer’s dementia 3.6 million are women and 2.2 million are men.A7,62 Based on estimates
from ADAMS, among people age 71 and older, 16% of women have
Lifetime risk is the probability that someone of a given age who does Alzheimer’s or other dementias compared with 11% of men.187
not have a particular condition will develop the condition during his The prevailing reason that has been stated for the higher preva-
or her remaining life span. Data from the Framingham Heart Study lence of Alzheimer’s and other dementias in women is that women
were used to estimate lifetime risks of Alzheimer’s dementia by age and live longer than men on average, and older age is the greatest risk
sex.A6,211 As shown in Figure 4, the study found that the estimated life- factor for Alzheimer’s.211-213 But when it comes to differences in the
time risk for Alzheimer’s dementia at age 45 was approximately one in actual risk of developing Alzheimer’s or other dementias for men and
five (20%) for women and one in 10 (10%) for men. The risks for both women of the same age, findings have been mixed. Most studies of
sexes were slightly higher at age 65.211 incidence in the United States have found no significant difference
 405

Other research is assessing whether the risk of Alzheimer’s could

actually be higher for women at any given age due to genetic differ-
ences or different susceptibility to Alzheimer’s pathology.226 A num-
ber of studies have shown that the APOE-e4 genotype, the best known
genetic risk factor for Alzheimer’s dementia, may have a stronger asso-
ciation with Alzheimer’s dementia227,228 and neurodegeneration229 in
women than in men. However, a recent meta-analysis found no differ-
ence between men and women in the association between APOE geno-
type and Alzheimer’s dementia overall, though there was an elevated
risk for women with the APOE-e4 genotype at certain age ranges.230 It
is unknown why the APOE gene could convey different risk for women,
but some evidence suggests that it may be due to an interaction
between the APOE genotype and the sex hormone estrogen.231,232
Finally, there is some evidence that women show more rapid cog-
nitive decline and neurodegeneration than men despite having simi-
lar levels of beta-amyloid and tau, meaning the hallmark proteins of
Alzheimer’s disease may have more negative effects for women than
men.233-235

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.211
3.6 Racial and ethnic differences in the prevalence
of Alzheimer’s and other dementias

between men and women in the proportion who develop Alzheimer’s Although there are more non-Hispanic whites living with Alzheimer’s
or other dementias at any given age.71,210,213-215 However, some Euro- and other dementias than any other racial or ethnic group in the United
pean studies have reported a higher incidence among women at older States (because non-Hispanic whites are the largest racial/ethnic
ages,216,217 and one study from the United Kingdom reported higher group in the country), older black/African Americans and Hispan-
incidence for men.218 Differences in the risk of dementia between ics/Latinos are disproportionately more likely than older whites to
men and women may therefore depend on age and/or geographic have Alzheimer’s or other dementias.16,17,236-239 Most studies indi-
region.219,220 cate that older black/African Americans are about twice as likely
If there is a difference in the risk of Alzheimer’s or other dementias to have Alzheimer’s or other dementias as older whites.18,19,209
between men and women, there are a number of potential biological Some studies indicate older Hispanics/Latinos are about one and
and social explanations.219,221 One explanation may be differences one-half times as likely to have Alzheimer’s or other dementias as
in the distribution of or even the effect of risk factors for dementia older whites.A8,19,240,241 However, Hispanics/Latinos comprise a very
between men and women. If women’s risk for Alzheimer’s or other diverse group in terms of cultural history, genetic ancestry and health
dementias is higher, it is possible that lower educational attainment profiles, and there is evidence that prevalence may differ from one spe-
in women than in men born in the first half of the 20th century could cific Hispanic/Latino ethnic group to another (for example, Mexican
account for some of the elevated risk, as limited formal education is a Americans compared with Caribbean Americans).242,243
risk factor for dementia.222 This explanation requires more research, The higher prevalence of Alzheimer’s dementia in minority racial
but there is evidence that increases in educational attainment over and ethnic groups compared with whites appears to be due to a
time in the United States — which have been more substantial for higher incidence of dementia in these groups.244 Variations in med-
women than men — have led to decreased risk for dementia.223 Inter- ical conditions, health-related behaviors and socioeconomic risk fac-
estingly, European studies have found that the relationship of lower tors across racial groups likely account for most of the differences in
education with dementia outcomes may actually be stronger in women risk of Alzheimer’s and other dementias.239 Despite some evidence
than men.224,225 Some studies have attributed an observed difference that the influence of genetic risk factors on Alzheimer’s and other
in risk for dementia between men and women to differences in health dementias may differ by race,80,82,245 genetic factors do not appear
factors. A study using Framingham Heart Study data suggested that to account for the large differences in prevalence or incidence among
men in the study appear to have a lower risk for dementia due to racial groups.244,246 Instead, health conditions such as cardiovascu-
“survival bias,” in which the men who survived beyond age 65 and were lar disease and diabetes, which are associated with an increased risk
included in the study were the ones with a healthier cardiovascular risk for Alzheimer’s and other dementias, are believed to account for
profile (men have a higher rate of death from cardiovascular disease in these differences, as they are more prevalent in black/African Amer-
middle age than women) and thus a lower risk for dementia.212 More ican and Hispanic/Latino people.247,248 Socioeconomic characteris-
research is needed to support this interpretation. tics, including lower levels and quality of education, higher rates of
406

poverty, and greater exposure to adversity and discrimination, may also continue to increase dramatically because of the increase in the num-
increase risk in black/African American and Hispanic/Latino commu- ber of people at the oldest ages.
nities (and may in turn contribute to the health conditions mentioned It is unclear whether these encouraging trends will continue
above).80,247-249 Some studies suggest that differences based on race into the future given worldwide trends showing increases in dia-
and ethnicity do not persist in rigorous analyses that account for such betes and obesity — potential risk factors for Alzheimer’s demen-
factors.135,187,244 tia — which may lead to a rebound in dementia risk in coming
There is evidence that missed diagnoses of Alzheimer’s and other years,102,257,259,275,276 or if these positive trends pertain to all racial
dementias are more common among older black/African Ameri- and ethnic groups.209,255,273,274,277 Thus, while recent findings are
cans and Hispanics/Latinos than among older whites.250,251 Based promising, the social and economic burden of Alzheimer’s and other
on data for Medicare beneficiaries age 65 and older, it has been dementias will continue to grow. Moreover, 68% of the projected
estimated that Alzheimer’s or another dementia had been diag- increase in the global prevalence and burden of dementia by 2050 will
nosed in 10.3% of whites, 12.2% of Hispanics/Latinos and 13.8% of take place in low- and middle-income countries, where there is cur-
black/African Americans.252 Although rates of diagnosis were higher rently no evidence that the risk of Alzheimer’s and other dementias has
among black/African Americans than among whites, according to been declining.278
prevalence studies that detect all people who have dementia irrespec-
tive of their use of the health care system, the rates should be even
higher for black/African Americans. 3.7.1 Looking to the future: Aging of the baby boom
There are fewer data from population-based cohort studies regard- generation
ing the national prevalence of Alzheimer’s and other dementias in racial
and ethnic groups other than whites, black/African Americans and His- A large segment of the American population — the baby boom gener-
panics/Latinos. However, a study examining electronic medical records ation — has reached age 65 and older, when the risk for Alzheimer’s
of members of a large health plan in California indicated that demen- and other dementias is elevated. By 2030, the segment of the U.S. pop-
tia incidence — determined by the presence of a dementia diagnosis in ulation age 65 and older will increase substantially, and the projected
members’ medical records — was highest in black/African Americans, 74 million older Americans will make up over 20% of the total pop-
intermediate for Latinos (the term used in the study for those who ulation (up from 16% in 2020).184,279 As the number of older Ameri-
self-reported as Latino or Hispanic) and whites, and lowest for Asian cans grows rapidly, so too will the numbers of new and existing cases of
Americans.253 A follow-up study with the same cohort showed het- Alzheimer’s dementia, as shown in Figure 5.A9,62
erogeneity within Asian-American subgroups, but all subgroups stud-
ied had lower dementia incidence than whites.254 A recent system- • By 2025, the number of people age 65 and older with Alzheimer’s
atic review of the literature found that Japanese Americans were the dementia is projected to reach 7.1 million — almost a 22% increase
only Asian-American subgroup with reliable prevalence data, and that from the 5.8 million age 65 and older affected in 2020.A10,62
they had the lowest prevalence of dementia compared with all other • By 2050, the number of people age 65 and older with Alzheimer’s
ethnic groups.243 More studies, especially those involving population- dementia is projected to reach 13.8 million, barring the develop-
based cohorts, are necessary to draw conclusions about the prevalence ment of medical breakthroughs to prevent, slow or cure Alzheimer’s
of Alzheimer’s and other dementias in different racial groups and sub- disease.A9,62
groups.

3.7.2 Growth of the oldest-old population

3.7 Trends in the prevalence and incidence of
Alzheimer’s dementia over time The number of Americans surviving into their 80s, 90s and beyond
is expected to grow dramatically due to medical advances, as well as
A growing number of studies indicate that the prevalence223,255-263 social and environmental conditions.279 Longer life expectancies and
and incidence218,259,263-270 of Alzheimer’s and other dementias in the aging of the large baby boom cohort will lead to an increase in
the United States and other higher-income Western countries may the number and percentage of Americans who will be 85 and older,
have declined in the past 25 years,218,223,258-269 though results are the oldest-old. Between now and 2050, the oldest-old are expected to
mixed.61,209,271,272 These declines have been attributed to increas- comprise an increasing proportion of the U.S. population age 65 and
ing levels of education and improved control of cardiovascular risk older — from 10% in 2020 to 19% in 2050.279 This will result in an addi-
factors.223,258,264,267,273,274 Such findings are promising and suggest tional 4.8 million oldest-old people — individuals at the highest risk for
that identifying and reducing risk factors for Alzheimer’s and other developing Alzheimer’s dementia.279
dementias may be effective. Although these findings indicate that a
person’s risk of dementia at any given age may be decreasing slightly, • In 2020, about 2.1 million people who have Alzheimer’s demen-
the total number of people with Alzheimer’s or other dementias in the tia are age 85 or older, accounting for 35% of all people with
United States and other high-income Western countries is expected to Alzheimer’s dementia.62
 407

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, 2010 to 2050.
Created from data from Hebert et al.A9,62

• When the first wave of baby boomers reaches age 85 (in 2031), it is as cancer and heart disease, but deaths due to other types of clini-
projected that more than 3 million people age 85 and older will have cally diagnosed dementia are not ranked in this manner. The number
Alzheimer’s dementia.62 of deaths from dementia of any type is much higher than the number of
• By 2050, 7 million people age 85 and older are projected to have reported Alzheimer’s deaths. In 2018, some form of dementia was the
Alzheimer’s dementia, accounting for about half (51%) of all people officially recorded underlying cause of death for 266,957 individuals
65 and older with Alzheimer’s dementia.62 (this includes the 122,019 from Alzheimer’s disease).281,283 Therefore,
the number of deaths from all causes of dementia, even as listed on
death certificates, is more than twice as high as the number of reported
4 MORTALITY AND MORBIDITY
Alzheimer’s deaths alone.
To add further complexity, the vast majority of death certificates
Alzheimer’s disease is officially listed as the sixth-leading cause of
listing Alzheimer’s disease or dementia as an underlying cause of death
death in the United States.280 It is the fifth-leading cause of death for
are not verified by autopsy, and research has shown that about 30%
those age 65 and older.281 However, it may cause even more deaths
of those diagnosed with Alzheimer’s dementia during life do not in
than official sources recognize. Alzheimer’s is also a leading cause of
fact have dementia due to Alzheimer’s disease, but have dementia
disability and poor health (morbidity). Before a person with Alzheimer’s
due to another cause (see Table 2). Therefore, an underlying cause of
dies, he or she lives through years of morbidity as the disease
death listed as Alzheimer’s disease may not be accurate. In this section,
progresses.
“deaths from Alzheimer’s disease” refers to what is officially reported
on death certificates, with the understanding that the person filling
4.1 Deaths from Alzheimer’s disease out the report believed dementia due to Alzheimer’s disease was the
underlying cause of death, usually without pathologic confirmation.
It is difficult to determine how many deaths are caused by Alzheimer’s Severe dementia frequently causes complications such as immobil-
disease each year because of the way causes of death are recorded. ity, swallowing disorders and malnutrition that significantly increase
According to data from the Centers for Disease Control and Preven- the risk of serious acute conditions that can cause death. One such
tion (CDC), 122,019 people died from Alzheimer’s disease in 2018, the condition is pneumonia (infection of the lungs), which is the most
latest year for which data are available.281 The CDC considers a person commonly identified immediate cause of death among older adults
to have died from Alzheimer’s if the death certificate lists Alzheimer’s as with Alzheimer’s or other dementias.284,285 One autopsy study found
the underlying cause of death, defined as “the disease or injury which that respiratory system diseases were the immediate cause of death
initiated the train of events leading directly to death.”282 in more than half of people with Alzheimer’s dementia, followed by
In the United States, Alzheimer’s disease is counted as a cause of circulatory system disease in about a quarter.285 Death certificates for
death that can be ranked against other leading causes of death such individuals with Alzheimer’s often list acute conditions such as
408

F I G U R E 6 Percentage changes in selected causes of death (all ages) between 2000 and 2018. Created from data from the National Center for
Health Statistics.281,294

pneumonia as the primary cause of death rather than third of all Medicare beneficiaries who die in a given year have been
Alzheimer’s.286-288 As a result, people with Alzheimer’s dementia diagnosed with Alzheimer’s or another dementia.291 Based on data
who die due to these acute conditions may not be counted among from the Chicago Health and Aging Project (CHAP) study, in 2020 an
the number of people who die from Alzheimer’s disease, even though estimated 700,000 people age 65 and older in the United States will
Alzheimer’s disease may well have caused the acute condition listed have Alzheimer’s when they die.292 Although some older adults who
on the death certificate. This difficulty in using death certificates to have Alzheimer’s disease at the time of death die from causes that are
determine the number of deaths from Alzheimer’s and other demen- unrelated to Alzheimer’s, many of them die from Alzheimer’s disease
tias has been referred to as a “blurred distinction between death with itself or from conditions in which Alzheimer’s was a contributing cause,
dementia and death from dementia.”289 such as pneumonia.
Another way to determine the number of deaths from Alzheimer’s Irrespective of the cause of death, among people age 70, 61% of
dementia is through calculations that compare the estimated risk of those with Alzheimer’s dementia are expected to die before age 80
death in those who have Alzheimer’s dementia with the estimated compared with 30% of people without Alzheimer’s dementia.293
risk of death in those who do not have Alzheimer’s dementia. A study
using data from the Rush Memory and Aging Project and the Religious 4.2 Public health impact of deaths from Alzheimer’s
Orders Study estimated that 500,000 deaths among people age 75 and disease
older in the United States in 2010 could be attributed to Alzheimer’s
dementia (estimates for people age 65 to 74 were not available), mean- Although deaths from other major causes have decreased significantly
ing that those deaths would not be expected to occur in that year if or remained approximately the same, official records indicate that
those individuals did not have Alzheimer’s dementia.290 deaths from Alzheimer’s disease have increased significantly. Between
The true number of deaths caused by Alzheimer’s is somewhere 2000 and 2018, the number of deaths from Alzheimer’s disease as
between the number of deaths from Alzheimer’s recorded on death recorded on death certificates has more than doubled, increasing
certificates and the number of people who have Alzheimer’s disease 146%, while the number of deaths from the number one cause of death
when they die. According to 2014 Medicare claims data, about one- (heart disease) decreased 7.8% (Figure 6).281,294 The increase in the
 409

TA B L E 5 Number of Deaths and Annual Mortality Rate (per TA B L E 5 (Continued)

100,000 People) Due to Alzheimer’s Disease by State, 2018
Number of Mortality
Number of Mortality State Deaths Rate
State Deaths Rate Utah 1,024 32.4
Alabama 2,616 53.5 Vermont 333 53.2
Arkansas 131 17.8 Virginia 2,592 30.4
Arizona 3,012 42 Washington 3,752 49.8
Arkansas 1,457 48.3 West Virginia 791 43.8
California 16,627 42 Wisconsin 2,453 42.2
Colorado 1,649 29 Wyoming 277 47.9
Connecticut 986 27.6 U.S. TOTAL 122,019 37.3
Delaware 412 42.6
Created from data from the National Center for Health Statistics.A11,281
District of Columbia 105 14.9
Florida 6,725 31.6
number of death certificates listing Alzheimer’s as the underlying cause
Georgia 4,513 42.9 of death probably reflects both a real increase in the actual number
Hawaii 480 33.8 of deaths from Alzheimer’s due in large part to Alzheimer’s becom-
Idaho 666 38 ing a more common cause of death as the population ages, as well as
Illinois 4,030 31.6 increased reporting of Alzheimer’s deaths on death certificates over
Indiana 2,668 39.9 time by physicians, coroners and others who assign causes of death.295
Iowa 1,439 45.6
Kansas 899 30.9
4.3 State-by-state deaths from Alzheimer’s disease
Kentucky 1,674 37.5
Louisiana 2,166 46.5 Table 5 provides information on the number of deaths due to
Maine 580 43.3 Alzheimer’s by state in 2018, the most recent year for which state-by-
Maryland 1,122 18.6 state data are available. This information was obtained from death cer-
Massachusetts 1,823 26.4 tificates and reflects the condition identified by the physician as the
Michigan 4,474 44.8 underlying cause of death. The table also provides annual mortality
Minnesota 2,436 43.4 rates by state to compare the risk of death due to Alzheimer’s disease
Mississippi 1,547 51.8 across states with varying population sizes. For the United States as

Missouri 2,641 43.1 a whole, in 2018, the mortality rate for Alzheimer’s disease was 37.3
deaths per 100,000 people.A11,281
Montana 310 29.2
Nebraska 683 35.4
Nevada 704 23.2 4.4 Alzheimer’s death rates
New Hampshire 487 35.9
New Jersey 2,710 30.4 As shown in Figure 7, the rate of deaths due to Alzheimer’s has risen
New Mexico 583 27.8 substantially since 2000.281 Table 6 shows that the rate of death
New York 3,755 19.2 from Alzheimer’s increases dramatically with age, especially after age
North Carolina 4,495 43.3 65.A11,281 The increase in the Alzheimer’s death rate over time has dis-

North Dakota 356 46.8 proportionately affected the oldest-old.294 Between 2000 and 2018,
the death rate from Alzheimer’s increased 32% for people age 65 to 74,
Ohio 5,391 46.1
but increased 53% for people age 75 to 84 and 84% for people age 85
Oklahoma 1,739 44.1
and older.281 A report by the CDC determined that even after adjusting
Oregon 1,868 44.6
for differences in age distributions over time, the annual Alzheimer’s
Pennsylvania 4,064 31.7
death rate in the United States increased substantially between 1999
Rhode Island 470 44.5
and 2014.295 Therefore, the growing proportion of older adults in the
South Carolina 2,616 51.5 country is not the only explanation for the increase in Alzheimer’s
South Dakota 437 49.5 death rates. Other possible reasons include fewer deaths from other
Tennessee 3,488 51.5 common causes of death in old age such as heart disease and stroke;
Texas 9,763 34 increased diagnosis of Alzheimer’s dementia; and increased reporting
(Continues) of Alzheimer’s as a cause of death by physicians and others who fill out
death certificates.295
410

F I G U R E 7 U.S. annual Alzheimer’s death rate (per 100,000 people) by year. Created from data from the National Center for Health
Statistics.281

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

Age 2000 2002 2004 2006 2008 2010 2012 2014 2016 2018
45-54 0.2 0.1 0.2 0.2 0.2 0.3 0.2 0.2 0.2 0.3
55-64 2.0 1.9 1.8 2.1 2.2 2.1 2.2 2.1 2.7 2.9
65-74 18.7 19.6 19.5 19.9 21.1 19.8 17.9 19.6 23.6 24.7
75-84 139.6 157.7 168.5 175.0 192.5 184.5 175.4 185.6 214.1 213.9
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

Created from data from the National Center for Health Statistics.281

4.5 Duration of illness from diagnosis to death developed methods to measure and compare the burden of different
diseases on a population in a way that takes into account not only the
Studies indicate that people age 65 and older survive an average of 4 number of people with the condition, but also the number of years of
to 8 years after a diagnosis of Alzheimer’s dementia, yet some live as life lost due to that disease and the number of healthy years of life
long as 20 years with Alzheimer’s dementia.210,296-303 This reflects the lost by virtue of being in a state of disability. The primary measure of
slow, insidious and uncertain progression of Alzheimer’s. A person who disease burden is called disability-adjusted life years (DALYs), which is
lives from age 70 to age 80 with Alzheimer’s dementia will spend an the sum of the number of years of life lost due to premature mortal-
average of 40% of this time in the severe stage.293 Much of this time ity (YLLs) and the number of years lived with disability (YLDs), totaled
will be spent in a nursing home. At age 80, approximately 75% of peo- across all those with the disease or injury. These measures indicate
ple with Alzheimer’s dementia live in a nursing home compared with that Alzheimer’s is a very burdensome disease, not only to the individ-
only 4% of the general population age 80.293 In all, an estimated two- uals with the disease, but also to their families and informal caregivers,
thirds of those who die of dementia do so in nursing homes, compared and that the burden of Alzheimer’s has increased more dramatically in
with 20% of people with cancer and 28% of people dying from all other the United States than the burden of other diseases in recent years.
conditions.304 According to the most recent Global Burden of Disease classifica-
tion system, Alzheimer’s disease rose from the 12th most burdensome
disease or injury in the United States in 1990 to the 6th in 2016 in
4.6 Burden of Alzheimer’s disease
terms of DALYs. In 2016, Alzheimer’s disease was the fourth highest
disease or injury in terms of YLLs and the 19th in terms of YLDs.305
The long duration of illness before death contributes significantly to
Taken together, these statistics indicate that not only is Alzheimer’s
the public health impact of Alzheimer’s disease because much of that
disease responsible for the deaths of more and more Americans, but
time is spent in a state of disability and dependence. Scientists have
 411

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
finances and legal affairs, and answering the telephone.
5 CAREGIVING
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
Helping the person adhere to treatment recommendations for
well-being. Caregiving often includes assistance with one or more dementia or other medical conditions.
activities of daily living (ADLs), including bathing and dressing, as well
Assisting with personal activities of daily living (ADLs), such as
as multiple instrumental activities of daily living (IADLs), such as pay- bathing, dressing, grooming and feeding and helping the person
ing bills, shopping and using transportation.306,307 Caregivers also pro- walk, transfer from bed to chair, use the toilet and manage
vide emotional support to people with Alzheimer’s as well as many incontinence.

other forms of help (for example, communicating and coordinating care Managing behavioral symptoms of the disease such as aggressive
behavior, wandering, depressive mood, agitation, anxiety, repetitive
with other family members and health care providers, ensuring safety
activity and nighttime disturbances.
at home and elsewhere, and managing health conditions; see Table 7).
Finding and using support services such as support groups and adult
In addition to providing descriptive information about caregivers of
day service programs.
people with Alzheimer’s or other dementias, this section compares
Making arrangements for paid in-home, nursing home or assisted
caregivers of people with dementia to either caregivers of people with living care.
other medical conditions or, if that comparison is not available, to non- Hiring and supervising others who provide care.
caregivers.
Assuming additional responsibilities that are not necessarily specific
tasks, such as:
• Providing overall management of getting through the day.
5.1 Unpaid caregivers • Addressing family issues related to caring for a relative with
Alzheimer’s disease, including communication with other family
members about care plans, decision-making and arrangements for
Eighty-three percent of the help provided to older adults in the
respite for the main caregiver.
United States comes from family members, friends or other unpaid • Managing other health conditions (i.e., “comorbidities”), such as
caregivers.308 Nearly half of all caregivers (48%) who provide help arthritis, diabetes or cancer.
to older adults do so for someone with Alzheimer’s or another • Providing emotional support and a sense of security.

dementia.309 More than 16 million Americans provide unpaid care for

people with Alzheimer’s or other dementias.A12
It is important to note that the number of caregivers for peo- ranging from medications to food for the person with dementia.312,313
ple with Alzheimer’s or other dementias is calculated using a model Current estimates of the lifetime costs of care may underestimate the
that incorporates, in part, data from 2009, the most recent date for impact of a relative’s dementia on family caregivers’ health and work-
which the data are available. There are indications that over the past place productivity.314
decade, the number of family caregivers for all older Americans may Three of the main reasons caregivers provide care and assistance
have declined. The Alzheimer’s Association is examining new data and to a person with Alzheimer’s or another dementia are (1) the desire
recently released state-specific data on dementia caregivers and is to keep a family member or friend at home (65%), (2) proximity to
working with experts to revise the model to take into account these the person with dementia (48%) and (3) the caregiver’s perceived obli-
recent trends. Preliminary evaluation indicates that, compared with gation to the person with dementia (38%).A13 Caregivers often indi-
the past, there are fewer family caregivers in total, and each individ- cate love and a sense of duty and obligation when describing what
ual caregiver is experiencing a greater burden by providing significantly motivates them to assume care responsibilities for a relative or friend
more hours of care. If this preliminary analysis holds, future estimates living with dementia.315 Individuals with dementia living in the com-
of the number of Alzheimer’s and dementia caregivers nationally and munity are more likely than older adults without dementia to rely
for each state will be lower than current estimates. on multiple unpaid caregivers (often family members); 30% of older
In 2019, caregivers of people with Alzheimer’s or other dementias adults with dementia rely on three or more unpaid caregivers, whereas
provided an estimated 18.6 billion hours of informal (that is, unpaid) 23% of older adults without dementia rely on three or more unpaid
assistance, a contribution to the nation valued at nearly $244 billion. caregivers.316 Only a small percentage of older adults with demen-
This is approximately 47% of the net value of Walmart’s total revenue tia do not receive help from family members or other informal care
in 2019 ($514.4 billion)310 and 11 times the total revenue of McDon- providers (8%). Of these individuals, nearly half live alone, perhaps
ald’s in 2018 ($21 billion).311 The total lifetime cost of care for some- making it more difficult to ask for and receive informal care.316 Of
one with dementia was estimated at $357,297 in 2019 dollars. Sev- caregivers of spouses with dementia who are at the end of life, close
enty percent of the lifetime cost of care is borne by family caregivers to half provide care without the help of other family or friends.317
in the forms of unpaid caregiving and out-of-pocket expenses for items Living alone with dementia may be a particular challenge for certain
412

subgroups, such as lesbian, gay, bisexual and transgender (LGBT) indi- (BRFSS) surveys found that of all dementia caregivers who spend more
viduals, who may experience greater isolation for reasons ranging from than 40 hours per week providing care, 73% were women.324 Two and
social stigma to a diminished social network of available family or friend a half times as many women as men reported living with the person
caregivers.318 with dementia full time.328 Of those providing care to someone with
dementia for more than 5 years, 63% are women.324 Similarly, care-
givers who are women may experience slightly higher levels of bur-
5.1.1 Who are the caregivers? den, impaired mood, depression and impaired health than men, with
evidence suggesting that these differences arise because female care-
Several sources have examined the demographic background of family givers tend to spend more time caregiving, assume more caregiving
caregivers of people with Alzheimer’s or other dementias in the United tasks, and care for someone with more cognitive, functional and/or
States. They have found the following:A13,319-323 behavioral problems.329,330 Of dementia caregivers who indicate a
need for individual counseling or respite care, the large majority are
• Approximately two-thirds of dementia caregivers are women (individual counseling, 85%, and respite care, 84%).324
women.A13,319,320
• About 30% of caregivers are age 65 or older.A13
• Over 60% of caregivers are married, living with a partner or in a long- 5.1.3 Caregiving tasks
term relationship.A13,320
• Over half of caregivers are providing assistance to a parent The care provided to people with Alzheimer’s or other dementias
or in-law with dementia.323 Approximately 10% of caregivers is wide-ranging and in some instances all-encompassing. Table 7
provide help to a spouse with Alzheimer’s disease or another summarizes some of the most common types of dementia care
dementia.323,324 provided.
• Two-thirds of caregivers are non-Hispanic white,A13,319,320,323 Though the care provided by family members of people with
while 10% are black/African American, 8% are Hispanic/Latino and Alzheimer’s or other dementias is somewhat similar to the help pro-
5% are Asian.A13 The remaining 10% represent a variety of other vided by caregivers of people with other conditions, dementia care-
racial/ethnic groups. givers tend to provide more extensive assistance. Family caregivers of
• Approximately 40% of dementia caregivers have a college degree or people with dementia are more likely to monitor the health of the care
more education.A13,320,323 recipient than are caregivers of people without dementia (79% versus
• Forty-one percent of caregivers have a household income of 66%).331 Data from the 2011 National Health and Aging Trends Study
$50,000 or less.A13 indicated that caregivers of people with dementia are more likely than
• Among primary caregivers (individuals who indicate having the most caregivers of people without dementia to provide help with self-care
responsibility for helping their relatives) of people with dementia, and mobility (85% versus 71%) and health or medical care (63% versus
over half take care of their parents.322,325,326 52%).309,319 Figure 8 illustrates how family caregivers of people with
• Most caregivers (66%) live with the person with dementia in the dementia are more likely than caregivers of other older people to assist
community.316 with ADLs.
• Approximately one-quarter of dementia caregivers are “sandwich In addition to assisting with ADLs, more caregivers of people with
generation” caregivers — meaning that they care not only for an Alzheimer’s or other dementias advocate for these individuals with
aging parent, but also for a child.A13,323,324 community agencies and care providers (65%) and manage finances
(68%) compared with caregivers of people without dementia (46%
and 50%, respectively).323 More caregivers of people with Alzheimer’s
or other dementias arrange for outside services (46%) and communi-
5.1.2 Caregiving and women cate with health care professionals (80%) compared with caregivers
of people without dementia (27% and 59%, respectively).323 One in
The responsibilities of caring for someone with dementia often fall five caregivers of people with Alzheimer’s or other dementias (22%)
to women. As mentioned earlier, approximately two-thirds of demen- report problems dealing with a bank or credit union when helping to
tia caregivers are women.A13,319,320,325,326 Over one-third of demen- manage the finances of people living with dementia, compared with
tia caregivers are daughters.308,316 It is more common for wives 9% of caregivers of people without dementia.323 Caring for a per-
to provide informal care for a husband than vice versa.327 On son with dementia also means managing symptoms that caregivers
average, female caregivers spend more time caregiving than male of people with other diseases may not face, such as neuropsychiatric
caregivers.316 According to the 2014 Alzheimer’s Association Women symptoms (for example, anxiety, apathy and lack of inhibition)
and Alzheimer’s Poll, which surveyed both men and women, of those and severe behavioral problems. Family caregivers of people with
providing care for 21 hours or more per week, 67% were women.328 Alzheimer’s or other dementias are more likely than family caregivers
Similarly, the 2015-2017 Behavioral Risk Factor Surveillance System of people without dementia to help with emotional or mental health
 413

F I G U R E 8 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, Unites States, 2015. Created from data from the National Alliance for Caregiving and AARP.323

problems (41% versus 16%) and behavioral issues (15% versus 4%).323 5.1.5 Hours of unpaid care and economic value of
People with dementia tend to have larger networks of family and caregiving
friends involved in their care compared with people without dementia.
Family members and friends in dementia care networks may provide In 2019, the 16.3 million family and other unpaid caregivers of
help for a larger number of tasks than do those in non-dementia care people with Alzheimer’s or other dementias provided an estimated
networks, where family members and friends are more likely to focus 18.6 billion hours of unpaid care. This number represents an aver-
on specific care tasks.332 age of 21.9 hours of care per caregiver per week, or 1,139 hours of
When a person with Alzheimer’s or another dementia moves to care per caregiver per year.A14 With this care valued at $13.11 per
an assisted living residence or a nursing home, the help provided by hour,A15 the estimated economic value of care provided by family and
his or her family caregiver usually changes from the comprehensive other unpaid caregivers of people with dementia across the United
care summarized in Table 7 to providing emotional support, interacting States was nearly $244 billion in 2019. Table 8 shows the total hours
with facility staff and advocating for appropriate care. However, some of unpaid care as well as the value of care provided by family and
family caregivers continue to help with bathing, dressing and other other unpaid caregivers for the United States and each state. Unpaid
ADLs.333-335 caregivers of people with Alzheimer’s or other dementias provided
care valued at more than $4 billion in each of 22 states. Unpaid care-
givers in each of the four most populous states — California, Florida,
5.1.4 Duration of caregiving New York and Texas — provided care valued at more than $15 bil-
lion. A longitudinal study of the monetary value of family caregiving
Eighty-six percent of dementia caregivers have provided care and for people with dementia found that the overall value of daily fam-
assistance for at least the past year, according to the national 2014 ily care increased 18% with each additional year of providing care,
Alzheimer’s Association Women and Alzheimer’s Poll.A13 According to and that the value of this care further increased as the care recipi-
another study, well over half (57%) of family caregivers of people with ent’s cognitive abilities declined.336,337 Additional research is needed
Alzheimer’s or other dementias in the community had provided care for to estimate the future value of family care for people with Alzheimer’s
4 or more years.316 More than six in 10 (63%) Alzheimer’s caregivers disease and other dementias as the U.S. population continues to
expect to continue having care responsibilities for the next 5 years age.
compared with less than half of caregivers of people without demen- Apart from its long duration, the immediate demands of caregiv-
tia (49%).323 ing are also time-intensive. Caregivers of people with dementia report
414

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
Number of Hours of Value of Unpaid
Unpaid Care by State, 2019*
Caregivers Unpaid Care Care (in millions
Number of Hours of Value of Unpaid State (in thousands) (in millions) of dollars)
Caregivers Unpaid Care Care (in millions Utah 159 181 2,366
State (in thousands) (in millions) of dollars)
Vermont 30 34 449
Alabama 306 349 $4,576
Virginia 467 532 6,970
Alaska 33 38 495
Washington 353 402 5,268
Arizona 346 394 5,165
West Virginia 105 120 1,574
Arkansas 178 203 2,663
Wisconsin 195 223 2,918
California 1,624 1,849 24,245
Wyoming 28 31 413
Colorado 256 292 3,825
U.S. TOTAL 16,343 18,611 $243,994
Connecticut 178 203 2,655
∗
State totals may not add to the U.S. total due to rounding.
Delaware 55 63 822
Created from data from the 2009 Behavioral Risk Factor Surveillance Sys-
District of Columbia 29 33 433 tem survey, U.S. Census Bureau, Centers for Medicare & Medicaid Ser-
Florida 1,152 1,312 17,206 vices, National Alliance for Caregiving, AARP and U.S. Department of
Labor.A12,A14,A15
Georgia 540 615 8,063
Hawaii 65 74 975
providing 27 hours more care per month on average (92 hours ver-
Idaho 87 99 1,299
sus 65 hours) than caregivers of people without dementia.319 An anal-
Illinois 587 668 8,759
ysis of national caregiving trends from 1999 to 2015 found that the
Indiana 342 390 5,112
average hours of care per week increased from 45 in 1999 to 48
Iowa 136 155 2,036 in 2015 for dementia caregivers; over the same time period, weekly
Kansas 152 173 2,268 hours of care decreased for non-dementia caregivers from 34 to
Kentucky 274 312 4,089 24.338
Louisiana 231 264 3,456
Maine 70 79 1,042
Maryland 294 335 4,389 5.1.6 Impact of Alzheimer’s caregiving
Massachusetts 340 387 5,075
Michigan 518 590 7,733
Caring for a person with Alzheimer’s or another dementia poses spe-
cial challenges. For example, people in the middle to later stages
Minnesota 257 293 3,838
of Alzheimer’s experience losses in judgment, orientation, and the
Mississippi 207 235 3,085
ability to understand and communicate effectively. Family caregivers
Missouri 319 363 4,755
must often help people with Alzheimer’s manage these issues. The
Montana 51 58 757
personality and behavior of a person with Alzheimer’s are affected
Nebraska 83 95 1,240
as well, and these changes are often among the most challenging
Nevada 153 175 2,289 for family caregivers.339-341 Individuals with Alzheimer’s also require
New Hampshire 68 78 1,016 increasing levels of supervision and personal care as the disease pro-
New Jersey 448 510 6,684 gresses. As symptoms worsen, the care required by family members
New Mexico 108 123 1,617 can result in increased emotional stress and depression among care-
New York 1,011 1,151 15,089 givers; new or exacerbated health problems; and depleted income
North Carolina 479 545 7,151 and finances due in part to disruptions in employment and paying for
North Dakota 30 35 454 health care or other services for themselves and people living with

Ohio 604 688 9,018

dementia.342-350

Oklahoma 226 257 3,371

Caregiver emotional and social well-being
Oregon 188 214 2,810
The intimacy, shared experiences and memories that are often part of
Pennsylvania 677 771 10,104
the relationship between a caregiver and person living with demen-
Rhode Island 54 61 800
tia may be threatened due to the memory loss, functional impairment
South Carolina 318 362 4,749
and psychiatric/behavioral disturbances that can accompany the pro-
South Dakota 39 44 575 gression of Alzheimer’s. In a national poll, however, 45% of caregivers
Tennessee 444 506 6,628 of people with dementia indicated that providing help to someone
Texas 1,449 1,650 21,628 with cognitive impairment was very rewarding.326 Although caregivers
(Continues)
 415

• In a meta-analysis, the type of relationship was the strongest pre-

dictor of caregiver depression; caregivers of spouses had two and a
half times higher odds of having depression than caregivers of peo-
ple who were not spouses.362
• The prevalence of anxiety among dementia caregivers is 44%, which
is higher than among caregivers of people with stroke (31%).362,363
• Caregivers of individuals with Alzheimer’s report more subjective
cognitive problems (for example, problems with memory) and expe-
rience greater declines in cognition over time than non-caregivers
matched on age and other characteristics.366,367
• Caring for people with dementia who have four or more behavioral
and psychological symptoms (for example, aggression, self-harm and
wandering) represents a “tipping point” for family caregivers, as they
are more likely to report clinically meaningful depression and bur-
den (that is, negative emotional reactions to providing care).368

F I G U R E 9 Proportion of caregivers of people with Alzheimer’s or Strain.

other dementias who report high to very high emotional and physical
stress due to caregiving. Created from data from the Alzheimer’s
• Caregivers of people with Alzheimer’s or other dementias were
Association.A13
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
report positive feelings about caregiving, such as family togetherness catheter/colostomy care) was difficult.331
and the satisfaction of helping others,A13,351-357 they also frequently • About half of caregivers (51%) of people with Alzheimer’s or another
report higher levels of stress. dementia report having no experience performing medical/nursing-
related tasks,331 and they often lack the information or resources
Burden and stress. necessary to manage complex medication regimens.369-372
• According to the 2014 Alzheimer’s Association poll of caregivers,
• More dementia caregivers were classified as having a high level of respondents often believed they had no choice in taking on the role
burden than caregivers of people without dementia (46% versus of caregiver.A13
38%) based on the 2015 National Alliance for Caregiving/AARP sur- • The poll also found that more than half of women with children
vey’s Burden of Care Index, which combined the number of hours of under age 18 felt that caregiving for someone with dementia was
care and the number of ADL tasks performed by the caregiver into a more challenging than caring for children (53%).A13
single numerical score.323 • Many caregivers of people with Alzheimer’s or other dementias pro-
• Compared with caregivers of people without dementia, twice as vide help alone. Forty-one percent of dementia caregivers in the
many caregivers of those with dementia indicate substantial emo- 2014 Alzheimer’s Association poll reported that no one else pro-
tional, financial and physical difficulties.319 vided unpaid assistance.A13
• Fifty-nine percent of family caregivers of people with Alzheimer’s • A population-based sample of caregivers found that although
or other dementias rated the emotional stress of caregiving as high dementia caregivers indicated greater strain than non-dementia
or very high (Figure 9).A13 Nearly half of dementia caregivers (49%) caregivers, no substantial differences in strain between white and
indicate that providing help is highly stressful compared with 35% of black/African American dementia caregivers were evident.373
caregivers of people without dementia.323
Stress of care transitions.
Depression and mental health.
• Admitting a relative to a residential care facility has mixed effects
• A meta-analysis reported that caregivers of people with dementia on the emotional and psychological well-being of family caregivers.
were significantly more likely to experience depression and anxiety Some studies suggest that distress remains unchanged or even
than non-caregivers.330 Approximately 30% to 40% of family care- increases after a relative is admitted to a residential care facil-
givers of people with dementia report depression, compared with ity, but other studies have found that distress declines following
5% to 17% of non-caregivers of similar ages.358-362 admission.335,374,375
• The prevalence of depression is higher among dementia caregivers • The demands of caregiving may intensify as people with dementia
(30% to 40%) than other caregivers, such as those who provide help approach the end of life.376 In the year before the death of the per-
to individuals with schizophrenia (20%) or stroke (19%).362-365 son living with dementia, 59% of caregivers felt they were “on duty”
416

24 hours a day, and many felt that caregiving during this time was number of physiological changes that could increase the risk of devel-
extremely stressful.377 The same study found that 72% of family oping chronic conditions, including high levels of stress hormones,388
caregivers experienced relief when the person with Alzheimer’s or impaired immune function,342,389 slow wound healing390 and coronary
another dementia died.377 heart disease.391 A recent meta-analysis of studies examining the asso-
ciations between family caregiving, inflammation and immune func-
Caregiver physical health tion suggests that dementia caregivers had slight reductions in immune
For some caregivers, the demands of caregiving may cause declines function and modestly elevated inflammation.396 Additional studies of
in their own health. Evidence suggests that the stress of providing physiological changes before and after the start of caregiving in diverse
dementia care increases caregivers’ susceptibility to disease and health populations are needed to better understand the physiological effects
complications.378 As shown in Figure 9, 38% of Alzheimer’s and other of caregiving.
dementia caregivers indicate that the physical stress of caregiving is
high to very high.A13 Building on this, a recent analysis found that 29% Health care. Caregivers of people with dementia who are depressed,
of caregivers of people with Alzheimer’s or other dementias report have behavioral disturbances or have low functional status are more
that providing care results in high physical strain compared with 17% likely to be hospitalized and have emergency department visits397,398
of caregivers of people without dementia.323 The distress associated than caregivers of people with dementia who do not have these symp-
with caring for a relative with Alzheimer’s or another dementia has toms. Increased depressive symptoms among caregivers over time
also been shown to negatively influence the quality of family care- are linked to more frequent doctor visits, increased outpatient tests
givers’ sleep.379-381 Compared with those of the same age who were and procedures, and greater use of over-the-counter and prescription
not caregivers, caregivers of people with dementia are estimated to medications.398
lose between 2.4 hours and 3.5 hours of sleep a week.381
Mortality. Studies of how the health of people with dementia affects
General health. Seventy-four percent of caregivers of people with their caregivers’ risk of dying have had mixed findings.399,400 For exam-
Alzheimer’s or other dementias reported that they were “somewhat ple, caregivers of spouses who were hospitalized and had dementia
concerned” to “very concerned” about maintaining their own health were more likely to die in the following year than caregivers whose
since becoming a caregiver.A13 Forty-two percent of caregivers of peo- spouses were hospitalized but did not have dementia (after account-
ple with Alzheimer’s or another dementia report that their health is ing for differences in caregiver age).401 In addition, caregivers who
excellent or very good, which is lower than caregivers of people with- perceive higher strain due to care responsibilities were at higher risk
out dementia (50%).323 In addition, 35% of caregivers of people with for death than caregivers who perceive little or no strain.402 In con-
Alzheimer’s or another dementia report that their health has worsened trast, a longitudinal study of participants in the Health and Retirement
due to care responsibilities compared with 19% of caregivers of people Study found that dementia caregivers were less likely to die than non-
without dementia.323 A 2017 poll reported that 27% of dementia care- caregivers of similar age over a 12-year period. These results are con-
givers delayed or did not do things they should to maintain their own sistent with a protective effect of dementia care, at least as it per-
health.326 Dementia caregivers indicate lower health-related quality tains to death.399 The findings are also consistent with the possibility
of life than non-caregivers and are more likely than non-caregivers or that individuals who assume dementia care roles do so in part because
other caregivers to report that their health is fair or poor.344,348,382-384 their initial health allows them to do so. Eighteen percent of spousal
Data from the Health and Retirement Study showed that dementia caregivers die before their partners with dementia.403
caregivers who provided care to spouses were much more likely (41%
increased odds) than other spousal caregivers of similar age to become Caregiver employment and finances
increasingly frail during the time between becoming a caregiver and Six in 10 caregivers of people with Alzheimer’s or another demen-
their spouse’s death.385 Other studies, however, suggest that caregiv- tia were employed or had been employed in the prior year while
ing tasks have the positive effect of keeping older caregivers more providing care.323 These individuals worked an average of 35 hours
physically active than non-caregivers.386 per week while caregiving.323 Among people who were employed in
Recent research has examined variations in self-rated health among the past year while providing care to someone with Alzheimer’s or
dementia caregivers of diverse racial and ethnic backgrounds. Sup- another dementia, 57% reported sometimes needing to go in late
port from family and friends is associated with better self-rated health or leave early compared with 47% of non-dementia caregivers. Eigh-
for black/African American dementia caregivers, but not for white teen percent of dementia caregivers reduced their work hours due to
or Mexican American caregivers. A more positive perceived relation- care responsibilities, compared with 13% of non-dementia caregivers.
ship between the caregiver and person with dementia was associated Other work-related changes among dementia and non-dementia care-
with better self-rated health among black/African American and white givers who had been employed in the past year are summarized in
caregivers.387 Figure 10.323
Costs of dementia caregiving for employers may include
Physiological changes. The chronic stress of caregiving may be asso- replacement costs for employees who quit due to their caregiving
ciated with an increased incidence of hypertension342,388-395 and a responsibilities and costs of absenteeism and workday
 417

F I G U R E 10 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.323

interruptions.404 In 2010, employers lost $13 billion due to employees’ 5.1.7 Interventions designed to assist caregivers
elder care responsibilities.405,406
In 2019, it is estimated that dementia caregivers bore nearly For more than 30 years, strategies to support family caregivers of peo-
twice the average out-of-pocket costs (for example, medical care, ple with dementia have been developed and evaluated. The types and
personal care and household expenses for the person with demen- focus of these strategies (often called “interventions”) are summarized
tia and personal expenses and respite services for the caregiver) of in Table 9.347,409
non-dementia caregivers ($11,372 versus $6,121).407 Data from the In general, the goal of interventions is to improve the health and
2016 Alzheimer’s Association Family Impact of Alzheimer’s Survey well-being of dementia caregivers by relieving the negative aspects of
indicated that among care contributors (a friend or relative who paid caregiving. Some also aim to delay nursing home admission of the per-
for dementia expenses and/or provided care for someone with demen- son with dementia by providing caregivers with skills and resources
tia at least once a month in the prior year), 48% cut back on spending (emotional, social, psychological and/or technological) to continue
and 43% cut back on saving due to the out-of-pocket costs of provid- helping their relatives or friends at home. Specific approaches used in
ing help to someone with dementia.349 Due to care responsibilities in various interventions include providing education to caregivers, help-
the year prior to the survey, close to four in 10 care contributors indi- ing caregivers manage dementia-related symptoms, improving social
cated that the “food they bought just didn’t last, and they didn’t have support for caregivers and providing caregivers with respite from care-
money to get more,” and three in 10 ate less because of care-related giving duties.
costs.349 According to a publication on dementia caregiver interventions that
reviewed seven meta-analyses and 17 systematic reviews of random-
Effects of caregiver stress on people with dementia ized controlled trials, the following characteristics distinguish inter-
Research has emerged on the effects of caregiver stress on people with ventions that are effective: family caregivers are actively involved in
dementia and their use of health care services. For example, distress the intervention, in contrast to passively receiving information; the
on the part of family caregivers is associated with increased odds of intervention is tailored and flexible to meet the changing needs of fam-
institutionalization of the person with dementia, exacerbated behav- ily caregivers during the course of a relative’s dementia; and the inter-
ioral and psychological challenges in the person with dementia, and vention meets the needs not only of caregivers, but of people living with
increased likelihood of people with dementia being abused.408 See the dementia as well.410 A 2012 report examined randomized, controlled
Use and Costs of Health Care, Long-Term Care, and Hospice section for studies of caregiver interventions and identified 44 interventions that
additional information. benefited individuals with dementia as well as caregivers. More such
418

TA B L E 9 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 a structured program that provides 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. and Gaugler et al.346,409

interventions are emerging each year.411-416 A meta-analysis exam- most effective for specific situations and how these interventions are
ining the components of dementia caregiver interventions that are successful.444-447 Improved tools and measures to personalize services
most beneficial found that interventions that initially enhance caregiv- for caregivers to maximize their benefits represent an emerging area of
ing competency, gradually address the care needs of the person with research.448-454 More studies are also needed to adapt proven inter-
dementia, and offer emotional support for loss and grief when needed ventions or develop new intervention approaches for families from
appeared most effective.417 different racial, ethnic and socioeconomic backgrounds and in differ-
Interventions for dementia caregivers that have demonstrated effi- ent geographic settings.455-469 Additional research on interventions
cacy in scientific evaluations have been gradually implemented in focused on disease stages is also needed, as well as research on specific
the community, but are still not widespread or available to all family intervention needs for LGBT caregivers.318
caregivers.418-432 When interventions are implemented, they are gen-
erally successful at improving how caregiver services are delivered,
and have the potential to reach a large number of families while also 5.2 Paid caregivers
helping caregivers cope with their responsibilities.433 In one example,
researchers utilized an “agile implementation” process to more rapidly 5.2.1 Direct-care workers for people with
select, localize, evaluate and replicate a collaborative care model for Alzheimer’s or other dementias
dementia care. This care model has successfully operated for nearly
a decade in an Indianapolis health care system.434 Other efforts have Direct-care workers, such as nurse aides, home health aides, and per-
attempted to broaden the reach and accessibility of interventions for sonal and home care aides, provide most of the paid long-term care
dementia caregivers through the use of technologies (for instance, to older adults living at home or in residential settings.470,471 In nurs-
video-phone delivery and online training),435-442 while others inte- ing homes, nursing assistants make up the majority of staff who work
grated evidence-based dementia care interventions into community- with cognitively impaired residents.472-474 Nursing assistants help with
based, long-term service programs.443 In 2019, the National Institute bathing, dressing, housekeeping, food preparation and other activities.
on Aging (NIA) awarded funding to create the NIA Imbedded Prag- Most nursing assistants are women, and they come from increasingly
matic AD/ADRD Clinical Trials (IMPACT) Collaboratory. The Collabo- diverse ethnic, racial and geographic backgrounds.
ratory includes experts from more than 30 top research institutions Direct-care workers have difficult jobs, and they may not receive
and will support up to 40 pilot trials to test non-drug, care-based inter- the training necessary to provide dementia care.473,475-477 Turnover
ventions for people living with dementia in the next five years. The goal rates are high among direct-care workers, and recruitment and reten-
of IMPACT is to expedite the timeline of research implementation in tion are persistent challenges.476,478 Inadequate education and chal-
real-world settings to improve care for people living with dementia and lenging work environments have also contributed to higher turnover
their caregivers. rates among nursing staff across care environments.479 Studies have
Because caregivers and the settings in which they provide care are shown that staff training programs to improve the quality of dementia
diverse, more studies are required to define which interventions are care in nursing homes and hospitals have modest benefits.475,480-484
 419

The National Academies of Sciences, Engineering, and Medicine have dementia and their family caregivers (for example, delayed nursing
recommended changes to federal requirements for general direct- home admission and reduction in caregiver distress).499-508 Current
care worker training, including an increase in training hours from 75 research is attempting to determine the feasibility of these models
to 120, and instructional content that focuses more on knowledge beyond the specialty settings in which they currently operate.509-512
and skills related to caring for individuals with Alzheimer’s and other In 2016, the National Academies of Sciences, Engineering, and
dementias.476,477 Medicine released Families Caring for an Aging America, a seminal report
that includes a number of recommendations to refocus national health
care reform efforts from models of care that center on the patient
5.2.2 Shortage of geriatric health care professionals (person-centered care) to models of care that also explicitly engage
and support the patient’s family (family-centered care).404 These ser-
Professionals who may receive special training in caring for older adults vice models recognize the important role family members play in
include physicians, nurse practitioners, registered nurses, social work- providing care and incorporate family caregivers during the deliv-
ers, pharmacists, physician assistants and case workers.476 It is esti- ery of health care to their relatives with dementia. Furthermore,
mated that the United States has approximately half the number of cer- these models encourage health care providers to deliver evidence-
tified geriatricians that it currently needs.485 As of 2016, there were based services and support to both caregivers and people living with
7,293 certified geriatricians in the United States, or one geriatrician for dementia.404,513
every 1,924 Americans age 65 or older in need of care.486 The Ameri- In January 2017, Medicare began reimbursing physicians, physician
can Geriatrics Society estimates that, due to the increase in vulnerable assistants, nurse practitioners and clinical nurse specialists for health
older Americans who require geriatric care, an additional 23,750 geri- care visits that result in a comprehensive dementia care plan. Com-
atricians should be trained between now and 2030 to meet the needs prehensive care planning is a core element of effective dementia care
of an aging U.S. population487 (see the Special Report for additional management and can result in the delivery of services that potentially
information). There were 272,000 nurse practitioners in the United enhance quality of life for people with dementia and their caregivers. In
States in 2019. Eleven percent of nurse practitioners had special exper- the first year the care planning benefit was available (2017), less than
tise in gerontological care.488 Less than 1% of registered nurses, physi- 1% of those with Alzheimer’s disease or other dementias received a
cian assistants and pharmacists identify themselves as specializing in comprehensive dementia care plan. In seven states (Alaska, Montana,
geriatrics.476 Although 73% of social workers serve clients age 55 and New Hampshire, North Dakota, Rhode Island, South Dakota and Ver-
older, only 4% have formal certification in geriatric social work.476 Fur- mont) and the District of Columbia, no fee-for-service Medicare ben-
thermore, the overall aging of the long-term care workforce may affect eficiaries received a comprehensive dementia care plan. Use of the
the number of paid caregivers.479 Medicare care planning benefit did increase throughout the year, and
the rate of use was 3.3 times greater in the fourth quarter of 2017 com-
pared with the first quarter of 2017.514 The Alzheimer’s Association
5.2.3 Enhancing health care for family caregivers has developed a care planning kit (alz.org/careplanning) to help guide
providers to deliver effective care planning for people with dementia
There is a growing consensus that professionals caring for people with and their family caregivers.
Alzheimer’s and other dementias should acknowledge the role family
caregivers play in facilitating the treatment of dementia, and that pro-
fessionals should assess the well-being of family caregivers to improve 5.3 Trends in dementia caregiving
overall disease management of the person with dementia.489-493 The
complex care challenges of people with dementia also require inter- There is some indication that families are now better at managing the
professional collaboration and education.494-497 Ongoing efforts have care they provide to relatives with dementia than in the past. From
attempted to integrate innovative care management practices with tra- 1999 to 2015, dementia caregivers were significantly less likely to
ditional primary care for people with dementia. One example involves a report physical difficulties (from 30% in 1999 to 17% in 2015) and
skilled professional who serves as the care manager of the person with financial difficulties (from 22% in 1999 to 9% in 2015) related to
dementia. The care manager collaborates with primary care physicians care provision. In addition, use of respite care by dementia caregivers
and nurse practitioners to develop personalized care plans. These plans increased substantially (from 13% in 1999 to 27% in 2015).338 How-
can provide support to family caregivers, help people with dementia ever, as noted earlier, more work is needed to ensure that interventions
manage care transitions (for example, a change in care provider or site for dementia caregivers are available and accessible to those who need
of care) and ensure the person with dementia has access to appropriate them. A 2016 study of the Older Americans Act’s National Family Care-
community-based services. Other models include addressing the needs giver Support Program found that over half (52%) of Area Agencies on
of family caregivers simultaneously with comprehensive disease man- Aging did not offer evidence-based family caregiver interventions.515
agement of people living with dementia to improve the quality of life The Alzheimer’s Association has undertaken several efforts to
of both.498 Several evaluations have suggested that such approaches improve how dementia care is studied and delivered. Its recent demen-
have considerable potential for improving outcomes for people with tia care practice recommendations516 place individuals with dementia
420

F I G U R E 12 Distribution of aggregate costs of care by payment

source for Americans age 65 and older with Alzheimer’s or other
dementias, 2020. Data are in 2020 dollars. Percentages do not total
100 due to rounding. Created from data from the Lewin Model.A16
“Other” payment sources include private insurance, health
maintenance organizations, other managed care organizations and
uncompensated care.

F I G U R E 11 Person-centered care delivery. Created from data

from the Alzheimer’s Association.516 TA B L E 1 0 Average Annual Per-Person Payments by Payment
Source for Health Care and Long-Term Care Services, Medicare
Beneficiaries Age 65 and Older, with and without Alzheimer’s or
and their caregivers at the center of how care should be delivered (see Other Dementias, in 2019 Dollars
Figure 11). Essential to this model is the need to reconsider how we
Beneficiaries with Beneficiaries without
measure and design care for people with dementia by moving away Alzheimer’s or Alzheimer’s or Other
from an approach that focuses on loss of abilities due to dementia to Payment Source Other Dementias Dementias
an approach that emphasizes the individual’s unique needs, personal Medicare 25,213 7,750
experiences and strengths. This person-centered care philosophy Medicaid 8,779 374
not only values and respects the individual with dementia, but also Uncompensated 390 392
promotes well-being and health.517 This new framework is designed
Health maintenance 1,293 1,583
to shift how researchers and care providers think about dementia, and organization
may point the way to a greater understanding of the resilience, adapt- Private insurance 2,309 1,458
ability, and the possibilities of maintenance or even improvement of
Other payer 961 248
skills and abilities when living with dementia.518,519 A core element of
Out of pocket 11,068 2,395
this and other frameworks is to ensure that every experience and inter-
TOTAL* 50,201 14,326
action is seen as an opportunity to have meaningful engagement, which
∗
Payments from sources do not equal total payments exactly due to
in turn helps create a better quality of life for the person with dementia.
the effects of population weighting. Payments for all beneficiaries with
Alzheimer’s or other dementias include payments for community-dwelling
and facility-dwelling beneficiaries.
6 USE AND COSTS OF HEALTH CARE, Created from unpublished data from the Medicare Current Beneficiary Sur-
LONG-TERM CARE AND HOSPICE vey for 2011.207

The costs of health care and long-term care for individuals with 6.1 Total cost of health care and long-term care
Alzheimer’s or other dementias are substantial, and dementia is one of
the costliest conditions to society.520 Total payments in 2020 (in 2020 Table 10 reports the average annual per-person payments for health
dollars) for all individuals with Alzheimer’s or other dementias are esti- care and long-term care services for Medicare beneficiaries age 65
mated at $305 billion (Figure 12), not including the value of informal and older with and without Alzheimer’s or other dementias. Total
caregiving that is described in the Caregiving Section. Medicare and per-person health care and long-term care payments in 2019 from all
Medicaid are expected to cover $206 billion, or 67%, of the total health sources for Medicare beneficiaries with Alzheimer’s or other demen-
care and long-term care payments for people with Alzheimer’s or other tias were over three times as great as payments for other Medicare
dementias. Out-of-pocket spending is expected to be $66 billion, or beneficiaries in the same age group ($50,201 per person for those
22% of total payments.A16 Throughout the rest of this section, all costs with dementia compared with $14,326 per person for those without
are reported in 2019 dollars unless otherwise indicated.A17 dementia).A18,207
 421

Twenty-seven percent of older individuals with Alzheimer’s or other care spending than individuals without Alzheimer’s dementia, after
dementias who have Medicare also have Medicaid coverage, com- controlling for differences in patient characteristics, with the largest
pared with 11% of individuals without dementia.207 Medicaid pays for portion of the difference being due to higher spending on home
nursing home and other long-term care services for some people with health care and prescription drugs.526 Furthermore, individuals with
very low income and low assets, and the high use of these services Alzheimer’s dementia spend 12% of their income on out-of-pocket
by people with dementia translates into high costs to Medicaid. Aver- health care services compared with 7% for individuals without
age annual Medicaid payments per person for Medicare beneficia- Alzheimer’s dementia.527 Another research team found that the
ries with Alzheimer’s or other dementias ($8,779) were 23 times as five-year incremental cost of dementia was $15,704 (in 2017 dollars;
great as average Medicaid payments for Medicare beneficiaries with- $16,389 in 2019 dollars), with the additional costs of care in the first
out Alzheimer’s or other dementias ($374) (Table 10).207 year after diagnosis representing 46% of the five-year incremental
Despite these and other sources of financial assistance, individu- costs.527
als with Alzheimer’s or other dementias still incur high out-of-pocket Other researchers compared end-of-life costs for individuals with
costs. These costs are for Medicare, other health insurance premiums, and without dementia and found that the total cost in the last 5 years
deductibles, copayments and services not covered by Medicare, Medi- of life was $287,038 per person for individuals with dementia in 2010
caid or additional sources of support. On average, Medicare beneficia- dollars and $183,001 per person for individuals without dementia
ries age 65 and older with Alzheimer’s or other dementias paid $11,068 ($366,593 and $233,721, respectively, in 2019 dollars), a difference of
out of pocket annually for health care and long-term care services not 57%.528 Additionally, out-of-pocket costs represented a substantially
covered by other sources (Table 10).207 larger proportion of total wealth for those with dementia than for peo-
Researchers have evaluated the additional or “incremental” health ple without dementia (32% versus 11%).
care, residential long-term care and family caregiving costs of demen-
tia (that is, the costs specifically attributed to dementia when com-
paring people with and without dementia who have the same coexist- 6.2 Use and costs of health care services
ing medical conditions and demographic characteristics).312,520-522 In
a recent systematic review of studies of older adults with Alzheimer’s 6.2.1 Use of health care services
and other dementias enrolled in private Medicare managed care plans,
researchers found a wide range of incremental costs attributable to People with Alzheimer’s or other dementias have twice as many hos-
Alzheimer’s and other dementias.523 One group of researchers found pital stays per year as other older people.291 Moreover, the use of
that the incremental health care and nursing home costs for those with health care services by people with other serious medical conditions is
dementia were $28,501 per person per year in 2010 dollars ($36,400 strongly affected by the presence or absence of dementia. In particular,
in 2019 dollars).A19,520 Another group of researchers found that the people with coronary artery disease, diabetes, chronic kidney disease,
incremental lifetime cost of Alzheimer’s dementia was substantially chronic obstructive pulmonary disease (COPD), stroke or cancer who
higher for women than men, due to a greater lifetime risk of devel- also have Alzheimer’s or other dementias have higher use and costs of
oping Alzheimer’s dementia (see Prevalence section).524 Additionally, health care services than people with these medical conditions but no
because women are more likely to be widowed and living in poverty, coexisting dementia.
the incremental Medicaid costs associated with Alzheimer’s dementia In addition to having more hospital stays, older people with
were 70% higher for women than men. A third group of researchers Alzheimer’s or other dementias have more skilled nursing facility stays
found that the lifetime cost of care, including out-of-pocket costs, and home health care visits per year than other older people.
Medicare and Medicaid expenditures, and the value of informal care-
giving, was $321,780 per person with Alzheimer’s dementia in 2015 • Hospital. There are 538 hospital stays per 1,000 Medicare ben-
dollars ($357,297 in 2019 dollars).312 The lifetime cost of care for indi- eficiaries age 65 and older with Alzheimer’s or other dementias
viduals with Alzheimer’s dementia was more than twice the amount compared with 266 hospital stays per 1,000 Medicare beneficiaries
incurred by individuals without Alzheimer’s dementia, translating into age 65 and older without these conditions.291 A person with demen-
an incremental lifetime cost of Alzheimer’s dementia of $184,500 tia in 2012 had, on average, 23 inpatient days — defined as days in
($204,864 in 2019 dollars). a hospital or skilled nursing facility — compared with 5 days for the
Several groups of researchers have examined the additional Medicare population as a whole.529 The most common reasons for
out-of-pocket costs borne by individuals with Alzheimer’s or other hospitalization of people with Alzheimer’s dementia are syncope
dementias. In a recent analysis of the lifetime incremental cost of (fainting), fall and trauma (26%); ischemic heart disease (17%); and
dementia, researchers found that individuals with dementia spent gastrointestinal disease (9%) (Figure 13).530 In a study of inpatient
$38,540 (in 2014 dollars; $43,920 in 2019 dollars) more out-of-pocket hospitalizations of adults age 60 and older, those with Alzheimer’s
between age 65 and death, due to nursing home care.525 Another dementia were at 7% greater risk of dying during the hospital stay
group of researchers found that community-dwelling individuals and stayed nearly a day longer than individuals without Alzheimer’s
age 65 and older with Alzheimer’s dementia had $1,101 (in 2012 dementia.531 Among Medicare beneficiaries with Alzheimer’s
dollars; $1,316 in 2019 dollars) higher annual out-of-pocket health or other dementias, 22% of hospital stays are followed by a
422

F I G U R E 13 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 percent of hospitalizations were due to other reasons. Created from data from Rudolph et al.530

readmission within 30 days.532 While not directly comparable, one 6.2.2 Costs of health care services
study of a portion of Medicare beneficiaries found an overall read-
mission rate of 18%.533 The proportion of hospital stays followed by Average per-person payments for health care services (hospital, physi-
a readmission within 30 days remained relatively constant between cian and other medical provider, nursing home, skilled nursing facil-
2007 and 2017 (23% in 2007 versus 22% in 2017). ity, hospice and home health care) and prescription medications were
• Emergency department. There are 1,548 emergency department higher for Medicare beneficiaries with Alzheimer’s or other demen-
visits per 1,000 Medicare beneficiaries with Alzheimer’s or other tias than for other Medicare beneficiaries in the same age group
dementias per year.532 While not directly comparable, there were (Table 11).207
640 emergency department visits per 1,000 Medicare beneficia-
ries per year based on a review of utilization patterns of a sub-
set of Medicare beneficiaries.533 Emergency department visits for 6.2.3 Use and costs of health care service by
people with Alzheimer’s or other dementias per 1,000 Medicare state
beneficiaries increased 22% between 2007 and 2017 (from 1,265
to 1,548), similar to the increases in emergency department visits Substantial geographic variation exists in health care utilization and
for individuals with cancer, ischemic heart disease and heart failure Medicare payments by individuals with Alzheimer’s or other dementias
(Figure 14).532 (Table 12), similar to the geographic variation observed for Medicare
• Skilled nursing facility. Skilled nursing facilities provide direct medi- beneficiaries with other medical conditions.535 Emergency depart-
cal care that is performed or supervised by registered nurses, such ment visits range from 1,134 per 1,000 beneficiaries in South Dakota
as giving intravenous fluids, changing dressings and administering to 1,828 per 1,000 beneficiaries in West Virginia, and the percentage of
tube feedings.534 There are 283 skilled nursing facility stays per hospital stays followed by hospital readmission within 30 days ranges
1,000 beneficiaries with Alzheimer’s or other dementias per year from 15.4% in Utah to 26.8% in the District of Columbia. Medicare
compared with 73 stays per 1,000 beneficiaries without these con- spending per capita ranges from $17,572 in North Dakota to $34,875
ditions — a rate nearly four times as great.291 in Nevada (in 2019 dollars).532
• Home health care. Twenty-five percent of Medicare beneficiaries
age 65 and older with Alzheimer’s or other dementias have at least
one home health visit during the year, compared with 10% of Medi- 6.2.4 Use and costs of health care services across
care beneficiaries age 65 and older without Alzheimer’s or other the spectrum of cognitive impairment
dementias.291 Medicare covers home health services, such as part-
time skilled nursing care, home health aide (personal hands-on) care, Health care costs increase with the presence of dementia. In a
therapies, and medical social services in the home, but does not population-based study of adults age 70 to 89, annual health care
include homemaker or personal care services. costs were significantly higher for individuals with dementia than for
 423

F I G U R E 14 Percentage changes in emergency department visits per 1,000 fee-for-service Medicare beneficiaries for selected health
conditions between 2007 and 2017. Includes Medicare beneficiaries with a claims-based diagnosis of each chronic condition. Beneficiaries may
have more than one chronic condition. Created from data from U.S. Centers for Medicare & Medicaid Services.532

TA B L E 1 1 Average Annual Per-Person Payments by Type of those with either mild cognitive impairment (MCI) or without cognitive
Service for Health Care and Long-Term Care Services, Medicare impairment.536 Annual health care costs for individuals with MCI were
Beneficiaries Age 65 and Older, with and without Alzheimer’s or
not significantly different, however, from costs for individuals without
Other Dementias, in 2019 Dollars
cognitive impairment.
Beneficiaries with Beneficiaries without Several groups of researchers have found that both health care and
Alzheimer’s or Alzheimer’s or Other
prescription drug spending are significantly higher in the year prior
Service Other Dementias Dementias
to diagnosis,537-539 2 years prior to diagnosis,540 and one year after
Inpatient hospital $11,465 $3,703
diagnosis,527,537,538 compared with otherwise similar individuals not
Medical provider* 5,762 3,589
diagnosed with Alzheimer’s or another dementia, although there are
Skilled nursing 7,213 493
differences in the sources of increased spending. In one study, the
facility
largest differences were in inpatient and post-acute care,538 while
Nursing home 16,523 800
in another study the differences in spending were primarily due to
Hospice 2,126 161
outpatient care, home care and medical day services.539 In a third
Home health care 2,661 386
study, the differences were due to home health care, skilled nursing
Prescription 3,481 2,986 care and durable medical equipment.540 Additionally, three groups of
medications**
researchers have found that spending in the year after diagnosis was
∗
“Medical provider” includes physician, other provider and laboratory ser-
higher than for individuals not diagnosed with the disease, by amounts
vices, and medical equipment and supplies.
∗∗ lnformation on payments for prescription medications is only available for ranging from $7,264 in 2017 dollars, based on individuals with fee-for-
people who were living in the community, that is, not in a nursing home or an service Medicare coverage ($7,581 in 2019 dollars)527 to $17,852 in
assisted living facility. additional costs in 2014 dollars, based on another group of individuals
Created from unpublished data from the Medicare Current Beneficiary Sur-
with Medicare fee-for-service coverage ($20,344 in 2019 dollars).538
vey for 2011.207
One group of researchers, however, found no difference in health care
spending in the 2 years after diagnosis.540 One possible explanation
for the spike in health care costs in the year immediately prior to and
424

TA B L E 1 2 Emergency Department (ED) Visits, Hospital TA B L E 1 2 (Continued)

Readmissions and Per Capita Medicare Payments in 2019 Dollars by
Percentage of
Medicare Beneficiaries with Alzheimer’s or Other Dementias by State,
Hospital Stays
2017
Number of ED Followed by Per Capita
Percentage of Visits per 1,000 Readmission Medicare
Hospital Stays State Beneficiaries within 30 Days Payments
Number of ED Followed by Per Capita South Carolina 1,563.8 21.4 23,917
Visits per 1,000 Readmission Medicare
South Dakota 1,134.0 19.1 19,070
State Beneficiaries within 30 Days Payments
Tennessee 1,574.3 22.1 24,199
Alabama 1,426.8 21.5 22,555
Texas 1,544.9 22.0 30,383
Alaska 1,447.9 19.6 24,801
Utah 1,205.4 15.4 22,229
Arizona 1,491.3 20.6 25,490
Vermont 1,485.6 19.2 22,588
Arkansas 1,563.6 21.8 22,373
Virginia 1,637.2 22.0 23,846
California 1,497.6 23.1 32,940
Washington 1,483.7 18.5 22,007
Colorado 1,437.1 18.3 23,060
West Virginia 1,827.7 23.6 24,762
Connecticut 1,568.0 22.0 28,461
Wisconsin 1,510.4 20.1 21,516
Delaware 1,600.0 21.8 28,260
Wyoming 1,436.6 16.1 21,815
District of Columbia 1,698.5 26.8 31,993
U.S. AVERAGE 1,547.7 22.3 27,101*
Florida 1,564.9 23.4 28,606
∗
Georgia 1,568.5 21.9 24,228 The average per capita Medicare payments differ slightly from the figure
in Table 10 due to different underlying sources of data. Created from data
Hawaii 1,225.2 17.4 20,009 from the U S. Centers for Medicare & Medicaid Services.532
Idaho 1,401.8 17.0 21,051
Illinois 1,611.9 23.1 28,485
Indiana 1,510.5 21.0 25,572 after diagnosis of Alzheimer’s or another dementia relates to delays
Iowa 1,344.7 18.5 18,715 in timely diagnosis. One group of researchers found that individuals

Kansas 1,394.1 19.4 22,787

with cognitive decline who sought care from a specialist (that is, a
neurologist, psychiatrist or geriatrician) had a shorter time to diagno-
Kentucky 1,718.4 23.0 24,991
sis of Alzheimer’s disease.541 Additionally, individuals diagnosed with
Louisiana 1,770.8 22.1 29,001
cognitive impairment by a specialist had lower Medicare costs in the
Maine 1,666.3 19.8 21,787
year after receiving a diagnosis of Alzheimer’s dementia than those
Maryland 1,525.6 24.6 30,331
diagnosed by a non-specialist. One research team found that health
Massachusetts 1,618.0 24.3 30,535
care costs were higher in each of the first four years after a demen-
Michigan 1,711.5 24.1 28,325 tia diagnosis, but were not significantly different in the fifth year after
Minnesota 1,447.9 21.0 22,830 diagnosis.527
Mississippi 1,723.3 22.6 26,566
Missouri 1,515.1 22.4 23,441
Montana 1,307.1 17.5 18,664 6.2.5 Impact of Alzheimer’s and other dementias on
Nebraska 1,166.5 18.1 21,012 the use and costs of health care in people with
Nevada 1,712.2 25.4 34,875 coexisting medical conditions
New Hampshire 1,508.9 21.6 25,147
Medicare beneficiaries with Alzheimer’s or other dementias are more
New Jersey 1,459.8 23.0 30,930
likely than those without dementia to have other chronic conditions.291
New Mexico 1,566.1 20.7 22,711
While 26% of Medicare beneficiaries age 65 and older with Alzheimer’s
New York 1,446.1 23.7 31,353
or other dementias have five or more chronic conditions (includ-
North Carolina 1,699.3 21.5 23,226
ing Alzheimer’s or other dementias), only 4% of Medicare benefi-
North Dakota 1,193.4 19.2 17,572
ciaries without Alzheimer’s or other dementias have five or more
Ohio 1,633.7 22.6 26,502 chronic conditions.291 Table 13 reports the percentage of people with
Oklahoma 1,700.7 21.5 26,351 Alzheimer’s or other dementias who had certain coexisting medical
Oregon 1,582.9 18.5 21,210 conditions. In 2014, the latest year for which information is available,
Pennsylvania 1,477.7 22.4 26,839 38% of Medicare beneficiaries age 65 and older with dementia also had
Rhode Island 1,614.9 22.8 26,876 coronary artery disease, 37% had diabetes, 29% had chronic kidney dis-

(Continues) ease, 28% had congestive heart failure and 25% had chronic obstruc-
tive pulmonary disease.291
 425

TA B L E 1 3 Percentage of Medicare Beneficiaries Age 65 and dementias and beneficiaries who do not have Alzheimer’s or another
Older with Alzheimer’s or Other Dementias Who Have Specified dementia.291 Medicare beneficiaries with Alzheimer’s or other demen-
Coexisting Conditions
tias have higher average per-person payments in all categories except
Coexisting Condition Percentage hospital care payments for individuals with congestive heart fail-
Coronary artery disease 38 ure. One group of researchers found that individuals with dementia
Diabetes 37 and behavioral disturbances, such as agitation, had more psychiatric
Chronic kidney disease 29 comorbidities than individuals with dementia but without behavioral

Congestive heart failure 28 disturbances.542 Additionally, larger proportions of individuals with

dementia and behavioral disturbances used medications including anti-
Chronic obstructive pulmonary disease 25
hypertensives, dementia treatments, antipsychotics, antidepressants,
Stroke 22
antiepileptics and hypnotics.
Cancer 13

Created from unpublished data from the National 5% Sample Medicare Fee-
for-Service Beneficiaries for 2014.291 6.3 Use and costs of long-term care services

Medicare beneficiaries who have Alzheimer’s or other dementias An estimated 70% of older adults with Alzheimer’s or other dementias
and a coexisting medical condition have higher average per-person live in the community, compared with 98% of older adults without
payments for most health care services than Medicare beneficiaries Alzheimer’s or other dementias.207 Of those with dementia who live
with the same medical condition but without dementia. Table 14 shows in the community, 74% live with someone and the remaining 26% live
the average per-person Medicare payments for seven specific med- alone.207 As their disease progresses, people with Alzheimer’s
ical conditions among beneficiaries who have Alzheimer’s or other or other dementias generally receive more care from family

TA B L E 1 4 Average Annual Per-Person Payments by Type of Service and Coexisting Medical Condition for Medicare Beneficiaries Age 65 and
Older, with and without Alzheimer’s or Other Dementias, in 2019 Dollars*

Average Per-Person Medicare Payment

Medical Condition by
Alzheimer’s/Dementia Total Medicare Hospital Physician Skilled Nursing Home Health Hospice
(A/D) Status Payments Care Care Facility Care Care Care
Coronary artery disease
With A/D $28,136 $8,644 $2,401 $4,832 $2,516 $3,087
Without A/D 17,560 6,226 1,709 1,553 1,043 402
Diabetes
With A/D 27,237 8,225 2,351 4,673 2,434 2,780
Without A/D 15,036 5,152 1,506 1,350 906 273
Congestive heart failure
With A/D 30,872 9,714 2,521 5,282 2,635 3,706
Without A/D 26,193 9,862 2,265 2,860 1,871 866
Chronic kidney disease
With A/D 30,045 9,308 2,462 5,141 2,490 3,302
Without A/D 21,542 7,694 1,941 2,075 1,290 508
Chronic obstructive pulmonary disease
With A/D 29,825 9,335 2,492 5,094 2,575 3,424
Without A/D 20,346 7,476 1,883 1,927 1,289 646
Stroke
With A/D 28,549 8,531 2,377 5,028 2,420 3,435
Without A/D 20,567 6,940 1,914 2,527 1,562 649
Cancer
With A/D 27,046 8,093 2,302 4,334 2,226 3,073
Without A/D 17,154 5,320 1,579 1,157 743 520
∗
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 2014.291
426

members and other unpaid caregivers. Many people with demen- percent of nursing homes and 14% of other residential care facilities
tia also receive paid services at home; in adult day centers, assisted have a dementia special care unit,543 even though 72% of Medicare
living facilities or nursing homes; or in more than one of these settings beneficiaries with Alzheimer’s dementia have a nursing home stay
at different times during the often long course of the disease. Medicaid in the last 90 days of life.547 Additionally, 9% of residential care
is the only public program that covers the long nursing home stays facilities exclusively provide care to individuals with dementia,
that most people with dementia require in the late stages of their while less than 1% (0.4%) of nursing homes exclusively provide care
illnesses. to individuals with dementia.

Long-term care services provided at home and in the community

6.3.1 Use of long-term care services by setting Nationally, state Medicaid programs are shifting long-term care
services from institutional care to home- and community-based
Most people with Alzheimer’s or other dementias who live at home services as a means to both reduce unnecessary costs and meet
receive unpaid help from family members and friends, but some also the growing demand for these services by older adults. The federal
receive paid home- and community-based services, such as personal and state governments share the management and funding of the
care and adult day care. People with Alzheimer’s or other dementias program, and states differ greatly in the services covered by their
make up a large proportion of all elderly people who receive adult day Medicaid programs. In 2016, home- and community-based services
services and nursing home care. represented the majority (57%) of Medicaid spending on long-term
services and supports, with institutional care representing the remain-
• Home health services. Thirty-two percent of individuals using home ing 43%.548 Between 2013 and 2016, Medicaid spending on home-
health services have Alzheimer’s or other dementias.543 and community-based services increased 26% overall, while spend-
• Adult day services. Thirty-one percent of individuals using adult ing on institutional care increased only 1.5% over the same period.
day services have Alzheimer’s or other dementias.543 Overall, 69% Additionally, total spending on home care for Medicare beneficiaries
of adult day service programs offer specific programs for individu- with Alzheimer’s or other dementias nearly doubled between 2004
als with Alzheimer’s or other dementias, and 14% of adult day ser- and 2011, although increases in spending may be due to a variety
vice centers primarily serve individuals with Alzheimer’s or other of factors, including more people being diagnosed with Alzheimer’s
dementias.544 dementia, more people using home care, an increase in the number
• Residential care facilities. Forty-two percent of residents in res- of coexisting medical conditions, more intensive use of home care
idential care facilities (that is, housing that includes services to services and an increase in Medicaid coverage by older adults.207,549
assist with everyday activities, such as medication management and In two recent systematic reviews of the cost-effectiveness of home
meals), including assisted living facilities, have Alzheimer’s or other support interventions for individuals with dementia, researchers
dementias.543 Small residential care facilities (four to 25 beds) have found some evidence to support occupational therapy, home-based
a larger proportion of residents with Alzheimer’s or other demen- exercise and some psychological and behavioral treatments as poten-
tias than larger facilities (51% in facilities with four to 25 beds com- tially cost-effective approaches, although the research that has
pared with 44% in facilities with 26 to 50 beds and 39% in facili- evaluated both the costs and benefits of home support interventions
ties with more than 50 beds).545 Fifty-eight percent of residential is scant.550,551
care facilities offer programs for residents with Alzheimer’s or other
dementias.545 Transitions between care settings
• Nursing home care. Overall, 48% of nursing home residents have Individuals with dementia often move between a nursing facility, hos-
Alzheimer’s or other dementias,543 while 37% of short-stay (less pital and home, rather than remaining solely in a nursing facility. In a
than 100 days) nursing home residents have Alzheimer’s or other longitudinal study of primary care patients with dementia, researchers
dementias, and 59% of long stay (100 days or longer) residents found that individuals discharged from a nursing facility were nearly
have these conditions. In 2014, 61% of nursing home residents equally as likely to be discharged home (39%) as discharged to a hos-
with Alzheimer’s or other dementias had moderate or severe cog- pital (44%).552 Individuals with dementia may also transition between
nitive impairment.546 Four percent of Medicare beneficiaries with a nursing facility and hospital or between a nursing facility, home and
Alzheimer’s or other dementias reside in a nursing home,516 and hospital, creating challenges for caregivers and providers to ensure
nursing home admission by age 80 is expected for 75% of people that care is coordinated across settings. Other researchers have shown
with Alzheimer’s dementia compared with only 4% of the general that nursing home residents frequently have burdensome transitions
population.293 at the end of life, including admission to an intensive care unit in
• Alzheimer’s special care units and dedicated facilities. An the last month of life and late enrollment in hospice.553 The number
Alzheimer’s special care unit is a dedicated unit, wing or floor of care transitions for nursing home residents with advanced cogni-
in a nursing home or other residential care facility that has tailored tive impairment varies substantially across geographic regions of the
services for individuals with Alzheimer’s or other dementias. Fifteen United States.554
 427

6.3.2 Costs of long-term care services viduals purchasing long-term care insurance was $87,500 in 2010 dol-
lars ($102,373 in 2019 dollars), with 77% having an annual income
Long-term care services include home- and community-based services, greater than $50,000 ($58,499 in 2019 dollars) and 82% having assets
assisted living and nursing home care. The following estimates are for greater than $75,000 ($87,748 in 2019 dollars).559 Private health care
all users of these services. and long-term care insurance policies funded only about 8% of total
long-term care spending in 2013, representing $24.8 billion of the
• Home care. The median cost for a paid non-medical home health $310 billion total in 2013 dollars ($27.2 billion of the $340 billion in
aide is $23 per hour and $1,012 per week.555 Home care costs 2019 dollars).560 The private long-term care insurance market is highly
increased by 3.1% annually on average over the past 5 years. concentrated and has consolidated since 2000. In 2000, 41% of individ-
• Adult day centers. The median cost of adult day services is $75 per uals with a long-term care policy were insured by one of the five largest
day.555 The cost of adult day services has increased 2.9% annually insurers versus 56% in 2014.559
on average over the past 5 years. To address the dearth of private long-term care insurance options
• Assisted living facilities. The median cost for care in an assisted liv- and high out-of-pocket cost of long-term care services, Washington
ing facility is $4,051 per month, or $48,612 per year.555 The cost of became the first state in the country to pass a law that will create a
assisted living has increased 3% annually on average over the past 5 public state-operated long-term care insurance program.561 The Long-
years. Term Services and Supports Trust Program will be funded by a payroll
• Nursing homes. The average cost for a private room in a nursing tax on employees of 58 cents per $100 earned that begins in 2022, and
home is $280 per day, or $102,200 per year, and the average cost self-employed individuals will be able to opt in to the program. The pro-
of a semi-private room is $247 per day, or $90,155 per year.555 The gram is currently structured to pay up to $36,500 in lifetime benefits,
cost of nursing home care has increased 3.1% annually on average beginning in 2025.
over the past 5 years for both private and semi-private rooms.
Medicaid costs
Affordability of long-term care services Medicaid covers nursing home care and long-term care services in the
Few individuals with Alzheimer’s or other dementias have sufficient community for individuals who meet program requirements for level of
long-term care insurance or can afford to pay out of pocket for long- care, income and assets. To receive coverage, beneficiaries must have
term care services for as long as the services are needed. low incomes. Most nursing home residents who qualify for Medicaid
must spend all of their Social Security income and any other monthly
• Income and asset data are not available for people with Alzheimer’s income, except for a very small personal needs allowance, to pay for
or other dementias specifically, but 50% of Medicare beneficiaries nursing home care. Medicaid only makes up the difference if the nurs-
have incomes of $26,200 or less in 2016 dollars ($27,852 in 2019 ing home resident cannot pay the full cost of care or has a financially
dollars), and 25% have incomes of $15,250 or less in 2016 dollars dependent spouse. Although Medicaid covers the cost of nursing home
($16,212 in 2019 dollars).556 care, its coverage of many long-term care and support services, such as
• Fifty percent of Medicare beneficiaries had total savings of $74,450 assisted living care, home-based skilled nursing care and help with per-
or less in 2016 dollars ($79,145 in 2019 dollars), 25% had savings sonal care, varies by state.
of $14,550 or less in 2016 dollars ($15,468 in 2019 dollars), and 8% Total Medicaid spending for people with Alzheimer’s or other
had no savings or were in debt. Median savings were substantially dementias is projected to be $51 billion in 2020 (in 2020 dollars).A16
lower for black/African American and Hispanic/Latino beneficiaries Estimated state-by-state Medicaid spending on people with
than for white Medicare beneficiaries.556 Alzheimer’s or other dementias in 2020 (in 2020 dollars) is included
in Table 15. Total per-person Medicaid payments for Medicare ben-
Long-term care insurance eficiaries age 65 and older with Alzheimer’s or other dementias
Long-term care insurance typically covers the cost of care provided were 23 times as great as Medicaid payments for other Medicare
in a nursing home, assisted living facility and Alzheimer’s special care beneficiaries.207 Much of the difference in payments for beneficiaries
facility, as well as community-based services such as adult day care with Alzheimer’s or other dementias and other beneficiaries is due to
and services provided in the home, including nursing care and help the costs associated with long-term care (nursing homes and other
with personal care.557 Results from the 2016 Alzheimer’s Associa- residential care facilities, such as assisted living facilities) and the
tion Family Impact of Alzheimer’s Survey revealed that 28% of adults greater percentage of people with dementia who are eligible for
believed Medicare covered the cost of nursing home care for people Medicaid.
with Alzheimer’s, and 37% did not know whether it covered the cost of
nursing home care.349 Although Medicare covers care in a long-term
care hospital, skilled nursing care in a skilled nursing facility and hos- 6.3.3 Use and costs of care at the end of life
pice care, it does not cover long-term care in a nursing home.558
Industry reports estimate that approximately 7.2 million Americans Hospice care provides medical care, pain management, and emotional
had long-term care insurance in 2014.559 The median income for indi- and spiritual support for people who are dying, including people with
428

TA B L E 1 5 Total Medicaid Payments for Americans Age 65 and TA B L E 1 5 (Continued)

Older Living with Alzheimer’s or Other Dementias by State*
2020 (in millions 2025 (in millions Percentage
2020 (in millions 2025 (in millions Percentage State of dollars) of dollars) Increase
State of dollars) of dollars) Increase Vermont 116 146 26.4
Alabama $925 $1,127 21.8 Virginia 1,000 1,266 26.6
Alaska 76 110 44.6 Washington 547 689 26.0
Arizona 414 545 31.7 West Virginia 445 521 17.1
Arkansas 396 454 14.6 Wisconsin 777 924 18.9
California 4,197 5,235 24.7 Wyoming 86 111 28.8
Colorado 635 789 24.1 U.S. AVERAGE $51,226 $61,581 20.2
Connecticut 1,022 1,187 16.1 ∗
AII cost figures are reported in 2020 dollars. State totals may not add to
Delaware 253 313 23.6 the U.S. total due to rounding. Created from data from the Lewin Model.A16
District of Columbia 126 135 6.8
Florida 2,689 3,453 28.4
Alzheimer’s or other dementias, either in a facility or at home. Hos-
Georgia 1,265 1,594 26.0
pice care also provides emotional and spiritual support and bereave-
Hawaii 240 285 18.7 ment services for families of people who are dying. The main pur-
Idaho 149 196 31.2 pose of hospice is to allow individuals to die with dignity and without
Illinois 1,787 2,199 23.1 pain and other distressing symptoms that often accompany terminal ill-
Indiana 1,054 1,233 17.1 ness. Medicare is the primary source of payment for hospice care, but
Iowa 676 792 17.2 private insurance, Medicaid and other sources also pay for hospice
Kansas 473 543 14.6 care. Based on data from the National Hospice Survey for 2008 to

Kentucky 803 949 18.2 2011, nearly all (99%) hospices cared for individuals with dementia,
although only 67% of hospices cared for individuals with a primary
Louisiana 765 934 22.1
diagnosis of dementia.562 Fifty-two percent of individuals in for-profit
Maine 212 274 29.5
hospices had either a primary or comorbid diagnosis of dementia, while
Maryland 1,231 1,535 24.7
41% of individuals in nonprofit hospices had a diagnosis of dementia.
Massachusetts 1,753 2,031 15.9
More research is needed to understand the underlying reasons for the
Michigan 1,487 1,738 16.9
differences in the percentage of people with dementia in for-profit ver-
Minnesota 905 1,087 20.1
sus nonprofit hospices.
Mississippi 606 729 20.4 Nineteen percent of Medicare beneficiaries with Alzheimer’s and
Missouri 973 1,137 16.8 other dementias have at least one hospice claim annually compared
Montana 166 203 22.2 with 2% of Medicare beneficiaries without Alzheimer’s or other
Nebraska 372 411 10.3 dementias.291 Expansion of hospice care is associated with fewer indi-
Nevada 203 277 36.5 viduals with dementia having more than two hospitalizations for any
New Hampshire 254 335 31.9 reason or more than one hospitalization for pneumonia, urinary tract

New Jersey 2,186 2,614 19.6 infection, dehydration or sepsis in the last 90 days of life.563 In 2017,
there were 4,254 hospice companies in the United States that pro-
New Mexico 227 279 22.9
vided hospice care in the home, assisted living facilities, long-term
New York 5,453 6,306 15.6
care facilities, unskilled nursing facilities, skilled nursing facilities, inpa-
North Carolina 1,332 1,628 22.2
tient hospitals, inpatient hospice facilities and other facilities.564 Addi-
North Dakota 190 215 13.2
tionally, 18% of Medicare beneficiaries who received hospice care
Ohio 2,534 2,940 16.0
had a primary diagnosis of dementia, including Alzheimer’s demen-
Oklahoma 516 611 18.3
tia (Table 16).564 Dementia was the second most common primary
Oregon 253 317 25.4 diagnosis for Medicare beneficiaries admitted to hospice overall, with
Pennsylvania 3,658 4,029 10.2 cancer being the most common primary diagnosis. Forty-five percent
Rhode Island 470 565 20.1 of hospice users in 2014 had a primary or secondary diagnosis of
South Carolina 652 818 25.4 Alzheimer’s or other dementias, suggesting that a large proportion of
South Dakota 182 212 16.6 hospice users have Alzheimer’s as a comorbid condition.565 The aver-
Tennessee 1,109 1,377 24.2 age length of hospice stay for individuals with a primary diagnosis of

Texas 3,202 3,949 23.3 dementia was more than 50% longer than for individuals with other
primary diagnoses, based on data from the 2008 to 2011 National Hos-
Utah 185 235 27.0
pice Survey.562 Individuals with a primary diagnosis of dementia stayed
(Continues)
 429

TA B L E 1 6 Number and Percentage of Medicare Beneficiaries TA B L E 1 6 (Continued)

Admitted to Hospice with a Primary Diagnosis of Dementia by State,
Number of Percentage of
2017
State Beneficiaries Beneficiaries
Number of Percentage of Utah 2,506 19
State Beneficiaries Beneficiaries
Vermont 543 17
Alabama 5,867 18
Virginia 6,440 19
Alaska 95 14
Washington 5,459 20
Arizona 7,229 18
West Virginia 1,552 15
Arkansas 3,133 18
Wisconsin 5,086 16
California 30,045 20
Wyoming 89 7
Colorado 3,254 15
U.S. TOTAL 278,192 18
Connecticut 2,380 15
Created from data from the U.S. Centers for Medicare & Medicaid
Delaware 716 12
Services.564
District of Columbia 263 18
Florida 19,897 15
an average of 112 days versus 74 days for individuals with other pri-
Georgia 10,435 21
mary diagnoses.
Hawaii 943 16
Per-person hospice payments among all individuals with
Idaho 1,566 17
Alzheimer’s dementia averaged $2,126 compared with $161 for
Illinois 9,795 18 all other Medicare beneficiaries.207 In 2016 Medicare reimbursement
Indiana 5,922 17 for home hospice services changed from a simple daily rate for each
Iowa 3,278 17 setting to a two-tiered approach that provides higher reimbursement
Kansas 2,770 18 for days 1-60 than for subsequent days and a service intensity add-on
Kentucky 2,895 15 payment for home visits by a registered nurse or social worker in the
Louisiana 4,786 19 last 7 days of life. In fiscal year 2020, the routine home care rates are

Maine 1,494 19 $194.50 per day for days 1-60 and $153.72 per day for days 61 and
beyond.566 In a simulation to evaluate whether the reimbursement
Maryland 4,072 17
change will reduce costs for Medicare, a group of researchers found
Massachusetts 7,245 23
that the new reimbursement approach is anticipated to reduce costs
Michigan 9,001 16
for Medicare, although individuals with dementia who receive hospice
Minnesota 5,399 21
care will have higher Medicare spending overall than individuals with
Mississippi 3,547 20
dementia who do not receive hospice care.567
Missouri 5,991 17
For Medicare beneficiaries with advanced dementia who receive
Montana 507 11 skilled nursing facility care in the last 90 days of life, those who are
Nebraska 1,648 18 enrolled in hospice are less likely to die in the hospital.568 Addition-
Nevada 2,167 17 ally, those enrolled in hospice care are less likely to be hospitalized
New Hampshire 1,007 17 in the last 30 days of life569 and more likely to receive regular treat-
New Jersey 8,207 23 ment for pain.570,571 Nearly half of individuals with dementia die while
New Mexico 1,523 15 receiving hospice care.547 Satisfaction with medical care is higher for

New York 7,669 16 families of individuals with dementia who are enrolled in hospice care
than for families of individuals with dementia not enrolled in hospice
North Carolina 8,486 17
care.572
North Dakota 468 18
Ohio 12,656 17
Feeding tube use at the end of life
Oklahoma 4,102 18
Individuals with frequent transitions between health care settings
Oregon 3,565 17
are more likely to have feeding tubes at the end of life, even though
Pennsylvania 12,384 17
feeding tube placement does not prolong life or improve outcomes.529
Rhode Island 1,657 25 The odds of having a feeding tube inserted at the end of life vary across
South Carolina 6,038 20 the country and are not explained by severity of illness, restrictions
South Dakota 421 13 on the use of artificial hydration and nutrition, ethnicity or gender.
Tennessee 6,435 19 Researchers found that feeding tube use was highest for people with
dementia whose care was managed by a subspecialist physician or both
Texas 26,672 22
a subspecialist and a general practitioner. By contrast, feeding tube use
(Continues)
430

F I G U R E 15 Place of death due to Alzheimer’s disease, 1999 to 2017. Created from data from the National Center for Health Statistics.575

TA B L E 1 7 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 2019 Dollars

Total Medicare
Payments Per Hospital Physician Skilled Nursing Home Health Hospice
Race/Ethnicity Person Care Care Facility Care Care Care
White $21,174 $5,683 $1,637 $3,710 $1,832 $3,382
Black/African 28,633 9,566 2,219 4,599 2,239 2,503
American
Hispanic/Latino 22,694 7,690 1,930 3,535 1,932 1,864
Other 27,548 8,649 2,171 3,703 3,969 2,756

Created from unpublished data from the National 5% Sample Medicare Fee-for-Service Beneficiaries for 2014.291

was lower among people with dementia whose care was managed by a 6.4 Use and costs of health care and long-term care
general practitioner.573,574 With the expansion of Medicare-supported services by race/ethnicity
hospice care, the use of feeding tubes in the last 90 days of life has
decreased for individuals with Alzheimer’s or other dementias.563 Among Medicare beneficiaries with Alzheimer’s or other dementias,
Finally, with the increased focus on the lack of evidence supporting black/African Americans had the highest Medicare payments per
feeding tube use for people with advanced dementia, the proportion person per year, while whites had the lowest payments ($28,633
of nursing home residents receiving a feeding tube in the 12 months versus $21,174, respectively) (Table 17). The largest difference in
prior to death decreased from nearly 12% in 2000 to less than 6% payments was for hospital care, with black/African Americans incur-
in 2014.574 ring 1.7 times as much in hospital care costs as whites ($9,566 versus
$5,683).291
Place of death for individuals with Alzheimer’s or other dementias In a study of Medicaid beneficiaries with a diagnosis of Alzheimer’s
Between 1999 and 2017, the proportion of individuals with dementia that included both Medicaid and Medicare claims data,
Alzheimer’s who died in a nursing home decreased from 68% to researchers found significant differences in the costs of care by
51%, and the proportion who died in a medical facility decreased from race/ethnicity.576 These results demonstrated that black/African
15% to 5%.575 During the same period, the proportion of individuals Americans had significantly higher costs of care than whites or
who died at home increased from 14% to 28% (Figure 15).575 Hispanics/Latinos, primarily due to more inpatient care and more
 431

F I G U R E 16 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
2014.291

comorbidities. These differences may be attributable to later-stage mitted two or more times. Ten percent of Medicare enrollees had
diagnosis, which may lead to higher levels of disability while receiving at least one hospitalization for an ambulatory care-sensitive condi-
care; delays in accessing timely primary care; lack of care coordination; tion, and 14% of total hospitalizations for Medicare enrollees with
duplication of services across providers; or inequities in access to care. Alzheimer’s or other dementias were for ambulatory care sensitive
However, more research is needed to understand the reasons for this conditions.
health care disparity. Based on Medicare administrative data from 2010 to 2015,
preventable hospitalizations represented 23.5% of the total hospi-
talizations for individuals with Alzheimer’s or other dementias.578
6.5 Avoidable use of health care and long-term care Black/African American older adults had a substantially higher pro-
services portion of preventable hospitalizations (32%) compared with His-
panic/Latino and white older adults (22%).
6.5.1 Preventable hospitalizations Based on data from the Health and Retirement Study and from
Medicare, after controlling for demographic, clinical and health risk
Preventable hospitalizations are one common measure of health care factors, individuals with dementia had a 30% greater risk of having
quality. Preventable hospitalizations are hospitalizations for condi- a preventable hospitalization than those without a neuropsychiatric
tions that could have been avoided with better access to, or qual- disorder (that is, dementia, depression or cognitive impairment with-
ity of, preventive and primary care. Unplanned hospital readmissions out dementia). Moreover, individuals with both dementia and depres-
within 30 days are another type of hospitalization that potentially sion had a 70% greater risk of preventable hospitalization than those
could have been avoided with appropriate post-discharge care. In without a neuropsychiatric disorder.579 Another group of researchers
2013, 21% of hospitalizations for fee-for-service Medicare enrollees found that individuals with dementia and a caregiver with depression
with Alzheimer’s or other dementias were either for unplanned read- had 73% higher rates of emergency department use over 6 months
missions within 30 days or for an ambulatory care sensitive condi- than individuals with dementia and a caregiver who did not have
tion (that is, a condition that was potentially avoidable with timely depression.580
and effective ambulatory care). The total cost to Medicare of these Medicare beneficiaries who have Alzheimer’s or other dementias
potentially preventable hospitalizations was $4.7 billion (in 2013 dol- and a serious coexisting medical condition (for example, conges-
lars; $5.4 billion in 2019 dollars).577 Of people with dementia who tive heart failure) are more likely to be hospitalized than people
had at least one hospitalization, 18% were readmitted within 30 with the same coexisting medical condition but without dementia
days. Of those who were readmitted within 30 days, 27% were read- (Figure 16).291 One research team found that individuals
432

hospitalized with heart failure are more likely to be readmitted or A group of researchers found that individuals with dementia whose
die after hospital discharge if they also have cognitive impairment.581 care was concentrated within a smaller number of clinicians had
Another research team found that Medicare beneficiaries with fewer hospitalizations and emergency department visits and lower
Alzheimer’s or other dementias have more potentially avoidable hospi- health care spending overall compared with individuals whose care was
talizations for diabetes complications and hypertension, meaning that dispersed across a larger number of clinicians.587 More research is
the hospitalizations could possibly be prevented through proactive needed to understand whether continuity of care is a strategy for
care management in the outpatient setting.582 A third research team decreasing unnecessary health care use for people with Alzheimer’s or
found that having depression, rheumatoid arthritis or osteoarthritis other dementias.
was associated with higher emergency department use in Medicare
beneficiaries with possible or probable dementia and two more chronic
conditions.583 6.6 Projections for the future
Differences in health care use between individuals with and with-
out dementia are most prominent for those residing in the commu- Total annual payments for health care, long-term care and hospice
nity. Based on data from the Health and Retirement Study, community- care for people with Alzheimer’s or other dementias are projected to
residing individuals with dementia were more likely to have a poten- increase from $305 billion in 2020 to more than $1.1 trillion in 2050
tially preventable hospitalization, an emergency department visit that (in 2020 dollars). This dramatic rise includes nearly four-fold increases
was potentially avoidable, and/or an emergency department visit that both in government spending under Medicare and Medicaid and in out-
resulted in a hospitalization.584 For individuals residing in a nursing of-pocket spending.A16
home, there were no differences in the likelihood of being hospitalized
or having an emergency department visit.
6.6.1 Potential impact of changing the trajectory of
Alzheimer’s disease
6.5.2 Initiatives to reduce avoidable health care and
nursing home use While there are currently no FDA-approved pharmacologic treatments
that prevent or cure Alzheimer’s disease or slow its progression, sev-
Recent research has demonstrated that two types of programs have eral groups of researchers have estimated the cost savings of future
potential for reducing avoidable health care and nursing home use, with interventions that either slow the onset of dementia or reduce the
one type of program focusing on the caregiver and the other focusing symptoms.312,588,590 One group of researchers estimated that a treat-
on the care delivery team. The Caregiving section describes a number ment introduced in 2025 that delays the onset of Alzheimer’s by
of caregiver support programs, and some of these also hold promise for 5 years would reduce total health care payments by 33% and out-of-
reducing transitions to residential care for individuals with Alzheimer’s pocket payments by 44% in 2050.588 A second group of researchers
or other dementias. Additionally, collaborative care models — mod- estimated the cost savings of delaying the onset of Alzheimer’s dis-
els that include not only geriatricians, but also social workers, nurses ease by 1 to 5 years. For individuals age 70 and older, they projected a
and medical assistants, for example — can improve care coordination, 1-year delay would reduce total health care payments by 14% in 2050,
thereby reducing health care costs associated with hospitalizations, a 3-year delay would reduce total health care payments by 27%, and a
emergency department visits and other outpatient visits.502 For exam- 5-year delay would reduce health care payments by 39%.589 They also
ple, an interprofessional memory care clinic was shown to reduce per- projected that a delay in onset may increase per capita health care pay-
person health care costs by $3,474 in 2012 dollars ($4,153 in 2019 ments through the end of life due to longer life, although the additional
dollars) over a year for individuals with memory problems compared health care costs may be offset by lower informal care costs. A third
with others with memory problems whose care was overseen by a pri- group of researchers estimated that a treatment that slows the rate
mary care provider only.502 More than half of the cost savings was of functional decline by 10% would reduce average per-person lifetime
attributed to lower inpatient hospital costs. The program was relatively costs by $3,880 in 2015 dollars ($4,308 in 2019 dollars), while a treat-
low cost per person, with an average annual cost of $618 ($739 in ment that reduces the number of behavioral and psychological symp-
2019 dollars) — a nearly 6-to-1 return on investment. Another group toms by 10% would reduce average per-person lifetime costs by $680
of researchers, however, found that a dementia care program that used ($755 in 2019 dollars).312
nurse practitioners and physicians to co-manage patients was cost neu- The Alzheimer’s Association commissioned a study of the poten-
tral after taking into account the costs of the program and cost savings tial cost savings of early diagnosis,590 assuming that 88% of individ-
due to fewer long-term care nursing home admissions.585 However, in uals who will develop Alzheimer’s disease would be diagnosed in the
a recent systematic review and meta-analysis of 17 randomized con- MCI phase rather than the dementia phase or not at all. Approximately
trolled trials from seven different countries aimed at reducing avoid- $7 trillion could be saved in medical and long-term care costs for indi-
able acute hospital care by persons with dementia, none of the inter- viduals who were alive in 2018 and will develop Alzheimer’s disease.
ventions reduced acute hospital use, such as emergency department Cost savings were due to a smaller spike in costs immediately before
visits, hospital admissions, or hospital days.586 and after diagnosis due to 1) the diagnosis being made during the MCI
 433

phase rather than the dementia phase, which has higher costs, and 2) psychiatrists, and neuropsychologists. Given the complexity of diag-
lower medical and long-term care costs for individuals who have diag- nosing and managing treatment for people living with dementia, there
nosed and managed MCI and dementia compared with individuals with is general agreement that a having a robust workforce of specialists
unmanaged MCI and dementia. would be ideal to optimize their care. However, the reality is that the
A treatment that prevents, cures or slows the progression of the shortage of such specialists means that the major responsibility for
disease could result in substantial savings to the U.S. health care diagnosing and treating people living with dementia lies with primary
system. Without changes to the structure of the U.S. health care care physicians.
system, however, access to new treatments for Alzheimer’s may be For example, one recent study597 found that the vast majority of
severely restricted by capacity constraints. For example, one group of older Americans diagnosed with dementia never see a dementia care
researchers developed a model of capacity constraints that estimated specialist and are overwhelmingly diagnosed and cared for by non-
that individuals would wait an average of 19 months for treatment in specialists. Specifically, the study found that 85% of people first diag-
2020 if a new treatment is introduced by then.591 Under this model, nosed with dementia were diagnosed by a non-dementia specialist,
approximately 2.1 million individuals with MCI due to Alzheimer’s dis- specialist usually a primary care physician. The same study found that
ease would develop Alzheimer’s dementia between 2020 and 2040 one year after diagnosis, less than a quarter of patients had seen a
while on waiting lists for treatment. This model assumed both that dementia specialist. After five years, the percent of patients who had
the hypothetical treatment would require infusions at infusion centers seen a dementia specialist had only increased to 36%. Specialty care
and that it would depend on people being evaluated with amyloid PET was particularly low for Hispanic and Asian people.
scans. While the introduction of new treatments that prevent, cure or
slow the progress of Alzheimer’s could have a dramatic effect on the
incidence and severity of Alzheimer’s, it is clear that their effectiveness 7.2 Growing need, projected shortages in specialists
could be limited by constraints on both health care system capacity and
health insurance reimbursement. As noted in the Prevalence section, between 2020 and 2050 the size of
America’s older population (those 65 and over) is expected to increase
dramatically. As the size of the older population grows, the number
7 SPECIAL REPORT: ON THE FRONT of living with Alzheimer’s dementia will also increase. Today approxi-
LINES: PRIMARY CARE PHYSICIANS AND mately one in 10 people age 65 and older has Alzheimer’s dementia. At
ALZHEIMER’S CARE IN AMERICA the same time, however, the workforce to care for the older population
is currently, and is likely to continue to be, inadequate.
Alzheimer’s and other dementias represent a growing crisis in Amer- According to the National Center for Health Workforce Analysis,598
ica. As reported in the Prevalence section of this year’s Alzheimer’s Dis- there was already a shortage of geriatricians in 2013, and although a
ease Facts and Figures, there are currently more than 5 million Ameri- modest increase in supply was projected by 2025, it was not expected
cans living with Alzheimer’s dementia, a number which is projected to to meet demand. Trends in medical training also point to a grow-
increase to nearly 14 million by the year 2050. Meanwhile is a short- ing shortage of geriatricians into the future. For example, geriatrics-
age of specialty physicians to provide care for the large and increasing related graduate medical education programs grew by only 1.1% from
numbers of people with Alzheimer’s dementia in the United States. As the 2001-2002 academic year to the 2017-2018 academic year.599
a result, the responsibility for their medical care rests mainly with pri- Similarly, a study of the current and future U.S. neurology workforce
mary care physicians. This Special Report examines the current gaps projected a 19% shortage of neurologists by 2025.600
and projected future shortages in specialty care for Alzheimer’s and We project large increases in the need for specialists to care for peo-
other dementias. It also explores the challenges primary care physi- ple living with Alzheimer’s dementia in 2050. Table 18 shows state-
cians face in caring for those currently living with Alzheimer’s dementia by-state projections for the number of geriatricians needed in the
in meeting the future care needs of an aging U.S. population. This report year 2050. As a nation, we need to triple the number of geriatri-
concludes with recommendations to address these shortages and chal- cians who were practicing in 2019 to have enough geriatricians to
lenges so more Americans have access to dementia care. care for those 65 and older who are projected to have Alzheimer’s
dementia in 2050 (approximately 10% of the population age 65 and
older). However, the number must increase nine times to have enough
7.1 Who diagnoses and provides medical care? geriatricians to care for the 30% of the population age 65 and older
estimated by the National Center for Health Workforce Analysis to
Medical care for people with Alzheimer’s and other dementias involves need geriatrician care. Similar analyses also showed large projected
a broad array of practitioners, including physicians, neuropsycholo- needs for neurologists, geriatric psychiatrists, and neuropsycholo-
gists, and allied health care professionals such as occupational and gists, specialists who provide critical expertise in dementia diagnosis
physical therapists and home health aides. In this report, we focus on and care.
primary care physicians (family medicine, internal medicine, general These shortages will affect states differently. The gaps are small
practice) and specialists such as geriatricians, neurologists, geriatric in some states. For example, New York, Hawaii and Washington, D.C.,
434

TA B L E 1 8 Projected Geriatrician Needs in 2050 by State

Number of Number of Geriatricians Needed in Number of Geriatricians Needed in

Geriatricians in 2050 to Serve 10% of Those Age 65 2050 to Serve 30% of Those Age 65
State 2019 and Older and Older
Alabama 44 228 684
Alaska 6 31 92
Arizona 89 363 1,089
Arkansas 51 134 402
California 590 1,676 5,029
Colorado 89 289 867
Connecticut 99 166 497
Delaware 17 55 165
District of Columbia 37 28 83
Florida 348 1,365 4,096
Georgia 96 492 1,476
Hawaii 61 64 192
Idaho 10 87 261
Illinois 218 517 1,551
Indiana 65 299 897
Iowa 24 142 426
Kansas 23 121 364
Kentucky 34 207 622
Louisiana 31 198 595
Maine 37 71 213
Maryland 150 288 865
Massachusetts 206 347 1,042
Michigan 169 465 1,394
Minnesota 93 270 811
Mississippi 25 124 373
Missouri 103 283 849
Montana 8 59 177
North Carolina 159 535 1,606
North Dakota 15 34 103
Nebraska 23 84 253
Nevada 40 158 474
New Hampshire 30 72 217
New Jersey 205 398 1,193
New Mexico 29 93 279
New York 605 818 2,454
Ohio 163 537 1,611
Oklahoma 28 171 512
Oregon 62 232 695
Pennsylvania 278 601 1,803
Rhode Island 32 49 147
South Carolina 66 288 865
South Dakota 10 44 131
Tennessee 40 343 1,029
Texas 342 1,255 3,766

(Continues)
 435

TA B L E 1 8 (Continued)

Number of Number of Geriatricians Needed in Number of Geriatricians Needed in

Geriatricians in 2050 to Serve 10% of Those Age 65 2050 to Serve 30% of Those Age 65
State 2019 and Older and Older
Utah 21 114 341
Vermont 5 32 95
Virginia 103 406 1,218
Washington 132 399 1,198
West Virginia 19 83 250
Wisconsin 84 273 820
Wyoming 4 26 79
U.S. TOTAL 5,218 15,417 46,252

Notes: The 10% column is how many geriatricians will be needed to serve only those 65 and older projected to have Alzheimer’s dementia in 2050, assuming
that the percentage of people age 65 and older with Alzheimer’s dementia remains at 10%. The 30% column is how many geriatricians will be needed to
serve the 30% of people age 65 and older who need geriatrician care, regardless of whether they have dementia, according to the National Center for Health
Workforce Analysis.598 The number of practicing geriatricians in 2019 was provided by IQVIA and includes physicians with geriatrics as either their primary
or secondary specialty. Calculations assume that each geriatrician can care for up to 700 patients.598 The underlying state-by-state estimates of the 2050
population age 65 and older were provided by Claritas Pop-Facts 2020.

appear well-positioned to achieve the relatively modest increases they

need. In contrast, 14 states need to at least quintuple the number of Alzheimer’s Association Surveys
practicing geriatricians by 2050 to care for those 65 and older pro- Physicians included in the Alzheimer’s Association Primary
jected to have Alzheimer’s dementia, or increase the number by 15 Care Physician Dementia Training SurveyA20 were recruited
times to care for the 30% of the population age 65 and older projected via WebMD’s Medscape Physician Panel, which includes 68%
to need geriatrician care. Two states, Tennessee and Idaho, will need to of all practicing PCPs in the United States. To qualify for the
increase the number of geriatricians by nine times just to meet the care survey, PCPs had to have been in practice for at least two
needs of those projected to have Alzheimer’s dementia, or by 26 times years, spend at least 50% of their time in direct patient care,
to meet the needs of all those projected to need geriatrician care. and have a practice in which at least 10% of their patients
were age 65 or older. A total of 1000 PCPs, balanced by
age, gender, years in practice, type of practice, specialty,
7.3 Primary care physicians
and region to match the total U.S. population of PCPs, were
included in the survey.A20
With a shortage of medical specialists to meet the current and future
A total of 202 current PCP residents in general, family or
needs for Alzheimer’s dementia care in the United States, primary care
internal medicine who completed their medical school train-
physicians will play an increasingly important role in caring for individ-
ing within the last two years were recruited to participate in
uals across the disease continuum – from identifying warning signs, to
the Alzheimer’s Association Recent Medical School Graduate
providing competent diagnoses, and to meeting the ongoing care and
Dementia Training SurveyA21 through WebMD’s Medscape
support needs for patients living with a complex, progressive, and ulti-
Healthcare Professional Panel.
mately fatal disease.
PCPs who had completed their residency within the last
While PCPs are clearly on the front lines, little is known about
two years were recruited to participate in the Alzheimer’s
the extent of PCPs’ preparedness to meet the growing demands for
Association Recent Primary Care Resident Dementia Train-
dementia care in the clinical setting. In order to learn more about PCPs’
ing SurveyA22 through WebMD’s Medscape Physician Panel.
experiences, exposure and attitudes about their medical education and
The sample included 200 PCPs and was matched to the full
training in dementia care, the Alzheimer’s Association commissioned
population of PCPs who are in their first two years of prac-
Versta Research to conduct surveys of 1) PCPs,A20 2) recent medical
tice based on age, gender, specialty, and region.A22
school graduates currently completing a residency in primary careA21
and 3) recent primary care residency graduates.A22 All surveys were
conducted from December 11 to December 26, 2019.
The Alzheimer’s Association surveys revealed that
• More than half of PCPs state that there are not enough specialists
• PCPs recognize they are on the front lines of diagnosing and provid- to receive patient referrals.
ing care for Alzheimer’s and other dementias. • Medical school and residency programs in primary care offer very
• Half of PCPs believe that the medical profession is not prepared to limited coursework and patient contact related to Alzheimer’s and
meet the expected increase in demand. other dementias.
436

F I G U R E 17 Frequency of Primary Care Physicians Receiving Questions about Alzheimer’s or Other Dementias from Patients Age 65 and
Older. Created from data from the Alzheimer’s Association Primary Care Physician Dementia Training Survey.A20

• PCPs feel a duty and are committed to staying current on the latest or their families, every few days or more with nearly one in five (19%)
information about the care of patients with Alzheimer’s and other receiving these questions on a daily basis (Figure 17).
dementias, particularly disease management and treatment, screen- PCPs report that the number of patients with Alzheimer’s disease is
ing and testing, and diagnosis. growing. Almost nine of ten PCPs (87%) expect the number of patients
• Despite this, fewer than half have pursued additional training in they see with dementia to increase over the next five years, and one-
dementia care since medical school and residency, noting challenges third (33%) expect the number of diagnosed patients to increase “a lot”.
associated with obtaining such training.
• Nearly two in five PCPs say their own experience in treating patients Management of patients
has been one of the most important teachers, second only to contin- Despite knowing that they are on the front lines of dementia care, a
uing medical education (CME) courses. significant number of PCPs surveyed reported that they do not feel
adequately prepared to care for patients with Alzheimer’s and other
Overall, the results of the Alzheimer’s Association surveys under- dementias. More than one-quarter (27%) report being only sometimes
score the important role PCPs play in providing critical dementia care. or never comfortable answering patient questions about Alzheimer’s
Findings also highlight the need for additional dementia care training or other dementias. Moreover, even though the vast majority of diag-
opportunities for PCPs, both during medical school and residency and noses are made by PCPs, nearly four in 10 PCPs (39%) report never
in subsequent clinical practice. or only sometimes or never being comfortable personally making a
diagnosis of Alzheimer’s or other dementias. In addition, half of PCPs
say that the medical profession is either “not very prepared” or “not
7.3.1 Survey results at all prepared” to care for the growing number of people living with
Alzheimer’s or other dementias (Figure 18).
Patient population To care for their patients optimally, nearly one-third (32%) of PCPs
The Alzheimer’s Association Primary Care Physician Dementia Care make specialist referrals for their dementia patients at least once a
Training Survey revealed that more than four in five PCPs (82%) believe month. However, most PCPs (55%) report that there are not enough
they are on the front lines of providing critical elements of demen- specialists in their area to meet patient demand (Figure 19). There
tia care for their patients. PCPs reported that, on average, 40% of was a substantial difference in PCPs’ report of specialist availability
their patients are age 65 and older and, of these, 13% have been diag- depending on whether their practice was located in an urban or rural
nosed with Alzheimer’s or other dementias. The survey also demon- setting. While 44% of PCPs in a large city and 54% of those located in a
strated that the topic of dementia is one that comes up frequently dur- suburb near a large city reported that there are not enough specialists
ing patient visits. The majority (53%) of PCPs receive questions related in their area, 63% of PCPs in a small city or town and 71% of those in a
to Alzheimer’s or other dementias from their patients age 65 and older, rural area said the same.
 437

F I G U R E 18 Medical Profession’s Preparedness to Care for People Living with Alzheimer’s and Other Dementias. Created from data from the
Alzheimer’s Association Primary Care Physician Dementia Training Survey.A20

Medical school and residency training in dementia care tia during their residency training. However, they were only involved
The vast majority of PCPs (91%) had at least some training in the in diagnostic workup for 10 people with dementia who undiagnosed
diagnosis and care of Alzheimer’s and other dementias in medical when initially seen. Only 18% of recent residents feel “very prepared”
school, but most of those (66%) describe it as being “very little.” Almost to provide dementia care in practice, compared with 72% who feel
one-quarter (22%) of all PCPs had no residency training in dementia “somewhat,” “not very” or “not at all” prepared.
diagnosis and care. Of the 78% who did undergo training, 65% reported
Keeping current
that the amount was “very little.”
Finding New Developments. The Alzheimer’s Association surveys
Encouragingly, this trend seems to be changing. A greater propor-
revealed that virtually all PCPs (99%) believe it is important to stay
tion of recently trained PCPs report medical school and residency
current on new developments in dementia care. Similar responses
training in dementia care compared with PCPs with a greater number
were found among recent medical school graduates (99%) and recent
of years in practice. Ninety-eight percent of PCPs in practice for 2-9
residents (100%).
years report at least some dementia training in medical school, com-
pared with 81% of those with 30 or more years in practice. Similarly,
• 93% feel a duty to patients to keep up with new developments in
85% of PCPs in practice for 2-9 years report receiving dementia train-
diagnosis and care.
ing during their residency, compared to 65% of PCPs with 30 years or
• 92% believe patients and caregivers expect them to know the latest
more of practice. However, regardless of how much training they had,
thinking and best practices around dementia care.
most PCPs (78%) said that medical school and residency can never fully
• 92% believe dementia care is a rapidly evolving area of medicine that
prepare a physician for dementia care.
requires ongoing learning and training.
To better understand the dementia training new PCPs are undergo-
ing, the Alzheimer’s Association surveyed recent medical school and In addition, the surveys found that more than two-thirds of PCPs
residency graduates. The survey of first- and second-year PCP resi- (69%) say they are always learning about the diagnosis and care of
dents revealed an average of 41 hours of medical school coursework Alzheimer’s and other dementias, and half (50%) say they put in a lot
that specifically focused on dementia, including Alzheimer’s. However of time and effort keeping up with new developments. However, more
more than one in five (21%) reported having fewer than 20 hours of than three in five (63%) feel they don’t have enough time to keep up
dementia coursework in medical school. During their clinical training with all of the new developments and half (53%) say the extent to which
in medical school, they reported seeing an average of just 20 dementia they are keeping up with the new developments in dementia care is
patients. “only a little” or “not at all.” PCPs have enormous demands on their time
The survey of recent residents (currently in their first or second year and energy, across all health-related domains, so ensuring that PCPs
of practice) revealed that residents had an average of eight hours of have readily accessible, high quality training opportunities is an impor-
formal curricular training focused specifically on Alzheimer’s or other tant challenge for the field.
dementias, and one-quarter (26%) reported fewer than two hours. On The most important areas where PCPs want to stay current on
average, recent residents saw and helped 50 patients with demen- Alzheimer’s and other dementias include management and treatment
438

F I G U R E 19 Availability of Dementia Specialists for Patient Referral. Created from data from the Alzheimer’s Association Primary Care
Physician Dementia Training Survey.A20

(83%), screening and testing (69%) and diagnosis (64%). These same most from CME courses (Figure 20). This finding highlights a need for
three areas also ranked as most important in the surveys of recent better dementia training programs for PCPs. Additional sources where
medical school graduates and recent residents. Additional areas where PCPs have learned the most about dementia diagnosis and care include
PCPs want to stay current include prevention (49%), family support UpToDate
R
(32%), professional journals (32%), medical conferences
(49%), managing dementia alongside other conditions (46%), signs and (31%) and in residency (29%).A25
symptoms (44%), reducing risk (41%), patient support (40%), end-of- The reasons provided by PCPs for pursuing additional dementia
life care (31%), palliative care and hospice (28%), coordinating care care training include general ongoing patient needs given their patient
with other health care providers (24%), quality improvement measures population (70%), specific patient problems or needs they are try-
(20%), pathophysiology (19%), and clinical trials (16%). ing to solve (64%), a professional obligation to stay current (60%), or
their own personal or professional interest in the topic (53%). Few
Additional training opportunities. To keep up to date, PCPs are follow- PCPs have pursued additional training due to requirements for medi-
ing new developments in dementia care mainly by scanning journals cal licensing (11%), health insurance companies or other payers (3%),
or content summaries for newly published research (77%) or scanning or their employer (1%).
CME offerings for new training opportunities (66%).A23 However, only PCPs who haven’t pursued additional training say it’s because they
two of five PCPs (42%) have completed additional training specifically don’t have time (38%) and because they typically refer Alzheimer’s
on dementia care since their residency. The most common formats for and other dementia patients to other physicians (35%). Just 19%
additional training are CME courses (91%), medical conferences (68%), of those who haven’t pursued additional training say it’s because
reading professional journals (67%) and UpToDate
R
(53%).A24 The they feel confident in how their dementia patients are being
vast majority (89%) of PCPs feel that staying current with dementia managed.A26
diagnosis and care developments requires more than just fulfilling CME
requirements, and when learning, the majority (55%) try to go deeper
than what most CME offers. 7.4 Meeting future demand
When asked specifically about additional training opportunities,
58% of PCPs feel that the quality of existing training options is either This Alzheimer’s Association dementia care analysis and survey should
good or excellent, though challenges in obtaining the training were sound an alarm regarding the future of dementia care in America. This
noted. Nearly a third (31%) say the current options are difficult to report indicates a shortage of dementia care specialists and a PCP com-
access and half (49%) say that there are too few options for continu- munity committed, but not always adequately prepared, to meet the
ing education and training on dementia care. In fact, 37% reported that increased demands of an aging population.
they learned the most about dementia care from their own experiences One way to address shortages in the workforce is through schol-
treating patients, second only to the 40% who reported learning the arship and loan forgiveness programs offered by federal and state
 439

F I G U R E 20 Where Primary Care Physicians Learned the Most about Dementia Diagnosis and Care. Created from data from the Alzheimer’s
Association Primary Care Physician Dementia Training Survey.A20

governments. Studies have found that loan repayment programs are primary care capacity for dementia care through expanded use of
correlated with increasing the number of physicians practicing in rural this model.
areas601 and directly influence the decision of osteopathic medical Another approach to bridging the gap is to expand collaborative
graduates to become primary care physicians.602 A large increase and coordinated care programs, which rely heavily on non-specialists.
between 2002 and 2009 in the number of young people choosing Pilot programs for individuals with dementia have reduced hospital
nursing as a career followed the large increase in federal funding for and emergency room visits502,608 and nursing home placement.585 In
nursing workforce development, which includes loan repayment and the UCLA Alzheimer’s and Dementia Care Program, dementia care
scholarships.603 A report on the geriatric workforce by the Institute management is provided by a nurse practitioner supervised by a pri-
of Medicine (now known as the National Academy of Medicine) con- mary care physician. After one year in the program, 58% of people liv-
cluded that “programs that link financial support to service have been ing with dementia and 63% of their caregivers showed clinical benefit
effective in increasing the numbers of health care professionals that on validated instruments,508 and the gross savings to Medicare on an
serve in underserved areas of the country” and that such programs annual basis totaled $2,404 per patient per year.585 A similar collabo-
“serve as good models for the development of similar programs to rative care model in Indiana, the Healthy Aging Brain Center (HABC),
address shortages of geriatric providers.”476 resulted in gross savings of $3,474 per patient per year.502 While the
Another approach that may increase the number of providers avail- HABC included a specialist (either a geriatrician or behavioral neurol-
able to diagnose and treat those with Alzheimer’s and other dementias ogist) as part of the care team, the bulk of the team were not physi-
is through educational funding. For example, federal funding of depart- cians, and included a registered nurse, a medical assistant, a techni-
ments of family medicine at U.S. medical schools is associated with cian and a social worker. And among 780 individuals with dementia
an expansion of the primary care workforce.604 In addition, a recent who participated in the Care Ecosystem, which uses a trained navi-
demonstration project by the Centers for Medicare & Medicaid Ser- gator, an advanced practice nurse, a social worker and a pharmacist,
vices (CMS) found that funding for clinical education of Advanced Prac- there were 120 fewer emergency room visits, 16 fewer ambulance
tice Registered Nurses (APRN) resulted in a 54% increase in APRN use events, and 13 fewer hospitalizations than would otherwise be
student enrollment, with graduations increasing 67%.605 expected over a 12-month period.608 Individuals in these care mod-
In addition to policies that strengthen the specialty workforce, els still sometimes received care from specialists, but the improvement
federal and state support is needed for programs that build capacity in quality care can be attributed to the well-trained, largely primary
in primary care. One example is Project ECHO
R
(Extension for care teams.
Community Healthcare Outcomes), a highly successful tele-mentoring The Alzheimer’s Association also offers a variety of resources to
program for health care providers developed by the University of New support health systems and clinicians throughout the disease contin-
Mexico. Project ECHO has been shown to improve primary care for uum, including early detection and diagnosis of Alzheimer’s and other
multiple diseases, including hepatitis C606 and complex diabetes.607 dementias, management of these conditions, and care planning and
The Alzheimer’s Association is launching a global initiative to build support services following a diagnosis.
440

For a complete listing of available Alzheimer’s Association the Alzheimer’s Association, researchers determined that this
resources to support health systems and clinicians, visit alz.org/ discrepancy was mainly due to two differences in diagnos-
professionals/health-systems-clinicians. tic criteria: (1) a diagnosis of dementia in ADAMS required
impairments in daily functioning and (2) people determined to
have vascular dementia in ADAMS were not also counted as
7.5 Conclusion having Alzheimer’s, even if they exhibited clinical symptoms
of Alzheimer’s.188 Because the more stringent threshold for
This Special Report underscores the urgent need to develop the medi- dementia in ADAMS may miss people with mild Alzheimer’s
cal workforce to meet current and future demands for quality diagnosis dementia and because clinical-pathologic studies have shown
and care of people living with Alzheimer’s and other dementias. Cur- that mixed dementia due to both Alzheimer’s and vascular
rent and projected future shortages in specialist care—geriatricians, pathology in the brain is very common,37 the Association
neurologists, geriatric psychiatrists and neuropsychologists—place the believes that the larger CHAP estimates may be a more relevant
burden of the vast majority of patient care on PCPs. However, while estimate of the burden of Alzheimer’s dementia in the United
PCPs recognize that they are on the front lines of this crisis and feel a States.
duty to provide the highest quality care, they report that the medical A5. State-by-state prevalence of Alzheimer’s dementia: These state-
profession is not prepared to adequately face the problem, acknowl- by-state prevalence numbers are based on an analysis of inci-
edge that there is a shortage of specialists to receive patient referrals, dence data from CHAP, projected to each state’s population,
and note that training opportunities are lacking or difficult to access. with adjustments for state-specific age, gender, years of edu-
The severity of these needs requires solutions that develop the spe- cation, race and mortality.206 Specific prevalence numbers for
cialty workforce while also improving capacity in primary care. 2020 were derived from this analysis and provided to the
Alzheimer’s Association by a team led by Liesi Hebert, Sc.D., from
ACKNOWLEDGMENTS Rush University Institute on Healthy Aging.
The Alzheimer’s Association acknowledges the contributions of Joseph A6. Criteria for identifying people with Alzheimer’s or other
Gaugler, Ph.D., Bryan James, Ph.D., Tricia Johnson, Ph.D., Allison dementias in the Framingham Study: From 1975 to 2009, 7,901
Marin, Ph.D., and Jennifer Weuve, M.P.H., Sc.D., in the preparation of people from the Framingham Study who had survived free of
2020 Alzheimer’s Disease Facts and Figures. dementia to at least age 45, and 5,937 who had survived free
of dementia until at least age 65 were followed for incidence of
ENDNOTES dementia.211 Diagnosis of dementia was made according to the
Diagnostic and Statistical Manual of Mental Disorders, 4th Edition
A1. Estimated number (prevalence) of Americans age 65 and older (DSM-IV) criteria and required that the participant survive for
with Alzheimer’s dementia for 2020 (prevalence of Alzheimer’s at least 6 months after onset of symptoms. Standard diagnostic
in 2020): The number 5.8 million is from published prevalence criteria (the NINCDS-ADRDA criteria from 1984) were used to
estimates based on incidence data from the Chicago Health and diagnose Alzheimer’s dementia. The definition of Alzheimer’s
Aging Project (CHAP) and population estimates from the 2010 and other dementias used in the Framingham Study was very
U.S. Census.62 strict; if a definition that included milder disease and disease
A2. Percentage of total Alzheimer’s dementia cases by age groups: of less than 6 months’ duration were used, lifetime risks of
Percentages for each age group are based on the estimated Alzheimer’s and other dementias would be higher than those
200,000 people under 65,62 plus the estimated numbers for peo- estimated by this study.
ple age 65 to 74 (1 million), 75 to 84 (2.7 million), and 85+ (2.1 A7. Number of women and men age 65 and older with Alzheimer’s
million) based on prevalence estimates for each age group and dementia in the United States: The estimates for the number of
incidence data from the CHAP study. U.S. women (3.6 million) and men (2.2 million) age 65 and older
A3. Proportion of Americans age 65 and older with Alzheimer’s with Alzheimer’s in 2020 is from unpublished data from CHAP.
dementia: The 10% of the age 65 and older population is cal- For analytic methods, see Hebert et al.62
culated by dividing the estimated number of people age 65 and A8. Prevalence of Alzheimer’s and other dementias in older whites,
older with Alzheimer’s dementia (5.8 million) by the U.S. popu- black/African Americans and Hispanics/Latinos: The statement
lation age 65 and older in 2020, as projected by the U.S. Census that black/African Americans are twice as likely and Hispan-
Bureau (56.4 million) = approximately 10%.184 ics/Latinos one and one-half times as likely as whites to have
A4. Differences between CHAP and ADAMS estimates for Alzheimer’s or other dementias is the conclusion of an expert
Alzheimer’s dementia prevalence: ADAMS estimated the review of a number of multiracial and multiethnic data sources,
prevalence of Alzheimer’s dementia to be lower than CHAP, as reported in detail in the Special Report of the Alzheimer’s
at 2.3 million Americans age 71 and older in 2002,187 while Association’s 2010 Alzheimer’s Disease Facts and Figures.
the CHAP estimate for 2000 was 4.5 million.592 At a 2009 A9. Projected number of people with Alzheimer’s dementia: This
conference convened by the National Institute on Aging and figure comes from the CHAP study.62 Other projections are
 441

somewhat lower (see, for example, Brookmeyer et al.593 ) ences related to Alzheimer’s and dementia from Jan. 9, 2014,
because they relied on more conservative methods for counting to Jan. 29, 2014. An additional 512 respondents who provided
people who currently have Alzheimer’s dementia.A4 Nonethe- unpaid help to a relative or friend with Alzheimer’s or a related
less, these estimates are statistically consistent with each other, dementia were asked questions about their care provision. Ran-
and all projections suggest substantial growth in the number of dom selections of telephone numbers from landline and cell
people with Alzheimer’s dementia over the coming decades. phone exchanges throughout the United States were conducted.
A10. Projected number of people age 65 and older with Alzheimer’s One individual per household was selected from the landline
dementia in 2025: The number 7.1 million is based on a linear sample, and cell phone respondents were selected if they were
extrapolation from the projections of prevalence of Alzheimer’s 18 years old or older. Interviews were administered in English
for the years 2020 (5.8 million) and 2030 (8.4 million) from and Spanish. The poll “oversampled” Hispanics/Latinos, selected
CHAP.62 from U.S. Census tracts with higher than an 8% concentration
A11. Annual mortality rate due to Alzheimer’s disease by state: Unad- of this group. A list sample of Asian Americans was also uti-
justed death rates are presented rather than age-adjusted death lized to oversample this group. A general population weight was
rates in order to provide a clearer depiction of the true burden of used to adjust for number of adults in the household and tele-
mortality for each state. States such as Florida with larger popu- phone usage; the second stage of this weight balanced the sam-
lations of older people will have a larger burden of mortality due ple to estimated U.S. population characteristics. A weight for
to Alzheimer’s — a burden that appears smaller relative to other the caregiver sample accounted for the increased likelihood of
states when the rates are adjusted for age. female and white respondents in the caregiver sample. Sam-
A12. Number of family and other unpaid caregivers of people with pling weights were also created to account for the use of two
Alzheimer’s or other dementias: To calculate this number, the supplemental list samples. The resulting interviews comprise
Alzheimer’s Association started with data from the BRFSS sur- a probability-based, nationally representative sample of U.S.
vey. In 2009, the BRFSS survey asked respondents age 18 and adults. A caregiver was defined as an adult over age 18 who, in
over whether they had provided any regular care or assistance the past 12 months, provided unpaid care to a relative or friend
during the past month to a family member or friend who had age 50 or older with Alzheimer’s or another dementia. Question-
a health problem, long-term illness or disability. To determine naire design and interviewing were conducted by Abt SRBI of
the number of family and other unpaid caregivers nationally New York.
and by state, we applied the proportion of caregivers nation- A14. Number of hours of unpaid care: To calculate this number, the
ally and for each state from the 2009 BRFSS (as provided by Alzheimer’s Association used data from a follow-up analysis of
the CDC, Healthy Aging Program, unpublished data) to the results from the 2009 NAC/AARP national telephone survey
number of people age 18 and older nationally and in each (data provided under contract by Matthew Greenwald and Asso-
state from the U.S. Census Bureau report for July 2019. Avail- ciates, Nov. 11, 2009). These data show that caregivers of people
able at: https://www.census.gov/data/tables/time-series/demo/ with Alzheimer’s or other dementias provided an average of 21.9
popest/2010s-state-detail.html. Accessed on January 6, 2020. hours a week of care, or 1,139 hours per year. The number of
To calculate the proportion of family and other unpaid care- family and other unpaid caregivers (16.343 million)A12 was mul-
givers who provide care for a person with Alzheimer’s or tiplied by the average hours of care per year, which totals 18.611
another dementia, the Alzheimer’s Association used data from billion hours of care. This is slightly lower than the product of
the results of a national telephone survey also conducted in multiplying 1,139 by 16.343 million because of rounding.
2009 for the National Alliance for Caregiving (NAC)/AARP.594 A15. Value of unpaid caregiving: To calculate this number, the
The NAC/AARP survey asked respondents age 18 and over Alzheimer’s Association used the method of Amo and
whether they were providing unpaid care for a relative or friend colleagues.595 This method uses the average of the federal
age 18 or older or had provided such care during the past 12 minimum hourly wage ($7.25 in 2019) and the mean hourly
months. Respondents who answered affirmatively were then wage of home health aides ($18.97 in July 2019).596 The average
asked about the health problems of the person for whom they is $13.11, which was multiplied by the number of hours of
provided care. In response, 26% of caregivers said that: (1) unpaid care (18.611 billion) to derive the total value of unpaid
Alzheimer’s or another dementia was the main problem of the care ($243.994 billion; this is slightly higher than the product of
person for whom they provided care, or (2) the person had multiplying $13.11 by 18.611 billion because 18.611 billion is a
Alzheimer’s or other mental confusion in addition to his or her rounded number for the hours of unpaid care).
main problem. The 26% figure was applied to the total number A16. Lewin Model on Alzheimer’s and dementia costs: These num-
of caregivers nationally and in each state, resulting in a total of bers come from a model created for the Alzheimer’s Associa-
16.343 million Alzheimer’s and dementia caregivers. tion by the Lewin Group. The model estimates total payments
A13. The 2014 Alzheimer’s Association Women and Alzheimer’s Poll: for health care, long-term care and hospice — as well as state-
This poll questioned a nationally representative sample of 3,102 by-state Medicaid spending — for people with Alzheimer’s and
American adults about their attitudes, knowledge and experi- other dementias. The model was updated by the Lewin Group in
442

January 2015 (updating previous model) and June 2015 (addi- • Survey participants who were living in a nursing home
tion of state-by-state Medicaid estimates). Detailed informa- or other residential care facility and had a diagnosis of
tion on the model, its long-term projections and its methodol- Alzheimer’s disease or dementia in their medical record.
ogy are available at alz.org/trajectory. For the purposes of the • Survey participants who had at least one Medicare claim
data presented in this report, the following parameters of the with a diagnostic code for Alzheimer’s or other dementias in
model were changed relative to the methodology outlined at 2008. The claim could be for any Medicare service, including
alz.org/trajectory: (1) cost data from the 2011 Medicare Current hospital, skilled nursing facility, outpatient medical care,
Beneficiary Survey (MCBS) were used rather than data from the home health care, hospice or physician, or other health care
2008 MCBS; (2) prevalence among older adults was assumed to provider visit. The diagnostic codes used to identify survey
equal the prevalence levels from Hebert and colleagues62 and participants with Alzheimer’s or other dementias are 331.0,
included in this report (5.8 million in 2020),A2 rather than the 331.1, 331.11, 331.19, 331.2, 331.7, 331.82, 290.0, 290.1,
prevalence estimates derived by the model itself; (3) estimates 290.10, 290.11, 290.12, 290.13, 290.20, 290.21, 290.3,
of inflation and excess cost growth reflect the most recent rele- 290.40, 290.41, 290.42, 290.43, 291.2, 294.0, 294.1, 294.10
vant estimates from the cited sources (Centers for Medicare & and 294.11.
Medicaid Services [CMS] actuaries and the Congressional Bud- Costs from the MCBS analysis are based on responses from
get Office); and (4) the most recent (2014) state-by-state data 2011 and reported in 2019 dollars.
from CMS on the number of nursing home residents and per- A19. Differences in estimated costs reported by Hurd and colleagues:
centage with moderate and severe cognitive impairment were Hurd and colleagues520 estimated per-person costs using data
used in lieu of 2012 data. from participants in ADAMS, a cohort in which all individ-
A17. All cost estimates were inflated to year 2019 dollars using the uals underwent diagnostic assessments for dementia. 2020
Consumer Price Index (CPI): All cost estimates were inflated Alzheimer’s Disease Facts and Figures estimated per-person costs
using the seasonally adjusted average prices for medical care using data from the Medicare Current Beneficiary Survey
services from all urban consumers. The relevant item within (MCBS) to be $50,201. One reason that the per-person costs
medical care services was used for each cost element. For exam- estimated by Hurd and colleagues are lower than those reported
ple, the medical care item within the CPI was used to inflate total in Facts and Figures is that ADAMS, with its diagnostic evaluations
health care payments; the hospital services item within the CPI of everyone in the study, is more likely than MCBS to have identi-
was used to inflate hospital payments; and the nursing home and fied individuals with less severe or undiagnosed Alzheimer’s. By
adult day services item within the CPI was used to inflate nursing contrast, the individuals with Alzheimer’s registered by MCBS
home payments. are likely to be those with more severe, and therefore more
A18. Medicare Current Beneficiary Survey Report: These data come costly, illness. A second reason is that the Hurd et al. estimated
from an analysis of findings from the 2011 Medicare Current costs reflect an effort to isolate the incremental costs associated
Beneficiary Survey (MCBS). The analysis was conducted for with Alzheimer’s and other dementias (those costs attributed
the Alzheimer’s Association by Avalere Health.207 The MCBS, only to dementia), while the per-person costs in 2020 Alzheimer’s
a continuous survey of a nationally representative sample of Disease Facts and Figures incorporate all costs of caring for peo-
about 15,000 Medicare beneficiaries, is linked to Medicare ple with the disease (regardless of whether the expenditure was
claims. The survey is supported by the U.S. Centers for Medicare related to dementia or a coexisting condition).
& Medicaid Services (CMS). For community-dwelling survey par- A20. Alzheimer’s Association Primary Care Physician Dementia
ticipants, MCBS interviews are conducted in person three times Training Survey: In sampling from the Medscape physician panel,
a year with the Medicare beneficiary or a proxy respondent if data from the American Medical Association (AMA) master file
the beneficiary is not able to respond. For survey participants of all practicing physicians in the United States were used to
who are living in a nursing home or another residential care stratify sampling and weight final data, ensuring a representa-
facility, such as an assisted living residence, retirement home tive sample based on age, gender, years in practice, type of prac-
or a long-term care unit in a hospital or mental health facility, tice, specialty, and region. Of the 1,000 respondents of the sur-
MCBS interviews are conducted with a staff member designated vey, 18% spent less than 90% of their professional time in direct
by the facility administrator as the most appropriate to answer patient care, while 82% spent between 90 and 100% of their time
the questions. Data from the MCBS analysis that are included in direct patient care. On average, 50% of their patients were age
in 2020 Alzheimer’s Disease Facts and Figures pertain only to 18-64 and 40% were age 65 and older. Sixty percent of respon-
Medicare beneficiaries age 65 and older. For this MCBS analysis, dents were male and 39% were female. Twenty-nine percent of
people with dementia are defined as: respondents had been in practice for 10-19 years, 28% for 20-
• Community-dwelling survey participants who answered yes 29 years, 24% for 35 years or more, and 19% for fewer than
to the MCBS question, “Has a doctor ever told you that you 10 years. Eighty-three percent had office-based practices, and
had Alzheimer’s disease or dementia?” Proxy responses to 14% had hospital-based practices. Fifty percent had a primary
this question were accepted. medical specialty of family medicine, 47% specialized in internal
 443

medicine, and three percent were general practitioners. Thirty- selected that choice, are shown below. Participants were
four percent of respondents practiced in the South, 25% in the allowed to select more than one answer, so percentages do not
West, 22% in the Midwest, and 19% in the Northeast. add up to 100. Lectures (including grand rounds, noon confer-
A21. Alzheimer’s Association Recent Medical School Graduate ences, etc.) (38%); Other online resources (such as AAN, NIH,
Dementia Training Survey: Of the 202 respondents of the CDC, etc.) (20%); Workshops (11%); YouTube videos or other
survey, 55% were in their first year of residency and 45% resources found on social media platforms (4%); Geriatric fellow-
were in their second year. Ninety-seven percent of respon- ship (2%); Another format (4%).
dents were under age 40 and three percent were age 40-49. A25. Other sources where PCPs have learned the most about
Sixty-nine percent of respondents were male, and 31% were dementia diagnosis and care: Additional responses, ranked by
female. Sixty-eight percent had a primary medical specialty the percentage of participants who selected that choice, are
of internal medicine, 31% specialized in family medicine, and shown below. Participants were allowed to select more than one
less than one percent were general practitioners. Thirty-two answer, so percentages do not add up to 100. Own research to
percent of respondents were in residency in the South, 25% in learn about the topic (17%); In medical school (15%); Lectures
the Northeast, 23% in the Midwest, and 20% in the West. In (including grand rounds, noon conferences, etc.) (13%); Profes-
estimating total hours of training from the survey data, 48 work sional discussion groups (8%); Other online resources (such as
weeks were assumed per year, with 5 hours of formal curricu- AAN, NIH, CDC, etc.) (6%); Workshops (5%); YouTube videos or
lum training each week, over the course of a three-year PCP other resources found on social media platforms (1%); Another
residency. format (1%); Geriatric fellowship (less than 1%).
A22. Alzheimer’s Association Recent Primary Care Resident A26. Other reasons for not pursuing additional training in dementia
Dementia Training Survey: Data from the AMA master file diagnosis and care: Additional responses, ranked by the percent-
were used to weight final data to ensure a sample that closely age of participants who selected that choice, are shown below.
matches the full population of PCPs who are in their first two Participants were allowed to select more than one answer, so
years of practice based on age, gender, specialty and region. Of percentages do not add up to 100. Decided to focus practice on
the 200 respondents of the survey, 43% spent less than 90% of another area of medicine (17%); Dementia care is less relevant
their professional time in direct patient care, while 57 percent than other topics (15%); Do not have good access to resources
spent between 90 and 100% of their time in direct patient for additional training (14%); Do not see much Alzheimer’s or
care. Fifty-eight percent had finished residency and begun an other dementia among patients (7%); Medical school and res-
independent practice within the last year, and 42% had done so idency training was sufficient (5%); Not much has changed in
within the last two years. Fifty-two percent of respondents were dementia care so there is no need (5%); Other reasons (1%).
male and 48% were female. Sixty-one percent had office-based
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