2015 Alzheimer's Disease Facts and Figures

2015 Alzheimer's Disease Facts and Figures
2015 Alzheimer’s Disease
Facts and Figures
Includes a Special Report on Disclosing
a Diagnosis of Alzheimer’s Disease
Alzheimer’s Disease is the sixth-leading cause of death in the United States. more than
15 million Americans provide unpaid care for individuals with Alzheimer’s or another
dementia. Payments for health care are estimated to be $226 billion in 2015. fewer than
50 percent of people WITH ALZHEIMER’S disease report being told of their diagnosis.
About this report
2015 Alzheimer’s Disease Facts and Figures is
a statistical resource for U.S. data related to
Alzheimer’s disease, the most common cause
of dementia, as well as other dementias.
Background and context for interpretation
of the data are contained in the Overview.
This information includes descriptions of the
various causes of dementia and a summary of
current knowledge about Alzheimer’s disease.
Additional sections address prevalence,
mortality and morbidity, caregiving and use
and costs of health care. The Special Report
addresses issues surrounding the disclosure
of an Alzheimer’s diagnosis to individuals
with the disease.
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Specific information in this year’s
Alzheimer’s Disease Facts and Figures
includes:
• Proposed criteria and guidelines for diagnosing
Alzheimer’s disease from the National Institute on Aging and the Alzheimer’s Association.
• Overall number of Americans with Alzheimer’s disease nationally and for each state.
• Proportion of women and men with Alzheimer’s and
other dementias.
• Estimates of lifetime risk for developing Alzheimer’s disease.
• Number of deaths due to Alzheimer’s disease nationally and for each state, and death rates by age.
• Number of family caregivers, hours of care provided, economic value of unpaid care nationally and for each
state, and the impact of caregiving on caregivers.
• Use and costs of health care, long-term care and hospice care for people with Alzheimer’s disease and other dementias.
• Challenges surrounding the disclosure of an Alzheimer’s disease diagnosis to individuals with the disease.
The Appendices detail sources and methods used to
derive data in this report.
This report frequently cites statistics that apply to all
individuals with dementia. When possible, specific
information about individuals with Alzheimer’s disease is
provided; in other cases, the reference may be a more
general one of individuals with “Alzheimer’s disease and
other dementias.”
2015 Alzheimer’s Disease Facts and Figures
1
Contents
Overview of Alzheimer’s Disease
Dementia 5
Alzheimer’s Disease 8
Symptoms
8
Changes in the Brain That Are Associated with Alzheimer’s Disease
8
Genetic Mutations That Cause Alzheimer’s Disease
9
Risk Factors for Alzheimer’s Disease
9
Diagnosis
11
Treatment of Alzheimer’s Disease
12
Living with Alzheimer’s Disease 12
A Modern Diagnosis of Alzheimer’s Disease: Proposed Criteria and Guidelines
13
Prevalence
Prevalence of Alzheimer’s Disease and Other Dementias in the United States
Estimates of the Number of People with Alzheimer’s Disease by State
16
18
Incidence of Alzheimer’s Disease
18
Lifetime Risk of Alzheimer’s Disease
21
Trends in the Prevalence and Incidence of Alzheimer’s Disease 21
Looking to the Future
Growth of the Oldest-Old Population
22
23
Mortality and Morbidity
Deaths from Alzheimer’s Disease
25
Public Health Impact of Deaths from Alzheimer’s Disease 26
State-by-State Deaths from Alzheimer’s Disease
26
Alzheimer’s Disease Death Rates
28
2
Duration of Illness from Diagnosis to Death
28
Burden of Alzheimer’s Disease
28
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Caregiving
Unpaid Caregivers
31
Who Are the Caregivers?
31
Ethnic and Racial Diversity in Caregiving
31
Sandwich Generation Caregivers
32
Caregiving Tasks
32
Duration of Caregiving
34
Hours of Unpaid Care and Economic Value of Caregiving
35
Impact of Alzheimer’s Disease Caregiving 35
Interventions Designed to Assist Caregivers
40
Caregiver Interventions and Their Effects on Care Recipients 42
Paid Caregivers
42
Direct-Care Workers for People with Alzheimer’s Disease and Other Dementias
42
Shortage of Geriatric Health Care Professionals in the United States
43
Use and Costs of Health Care, Long-Term Care and Hospice Total Cost of Health Care, Long-Term Care and Hospice 45
Use and Costs of Health Care Services
47
Use and Costs of Long-Term Care Services
51
Use and Costs of Hospice Care
56
Projections for the Future
56
Special Report: disclosing A DIAGNOSIS OF ALZHEIMER’S DISEASE Historical Context
58
A Consensus for Disclosure
58
Are People Being Told They Have Alzheimer’s by Health Care Providers?
60
Reasons Cited for Not Disclosing a Diagnosis
64
Benefits of Disclosing a Diagnosis
The Process of Disclosure
Conclusion
65
66
67
Appendices
End Notes
68
References
71
Contents
3
Overview of Alzheimer’s Disease
Alzheimer’s disease
is the most common
cause of dementia.
4
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Alzheimer’s disease is a degenerative brain disease and the most
common cause of dementia.1-2 Dementia is also caused by other
diseases and conditions. It is characterized by a decline in memory,
language, problem-solving and other cognitive skills that affects
a person’s ability to perform everyday activities. This decline
occurs because nerve cells (neurons) in parts of the brain involved
in cognitive function have been damaged and no longer function
normally. In Alzheimer’s disease, neuronal damage eventually
affects parts of the brain that enable a person to carry out basic
bodily functions such as walking and swallowing. People in the final
stages of the disease are bed-bound and require around-the-clock
care. Alzheimer’s disease is ultimately fatal.
Dementia
Physicians often refer to the Diagnostic and Statistical
Manual of Mental Disorders (DSM) to guide them in
determining if an individual has dementia and, if so, the
condition causing dementia. The latest edition of the
manual, DSM-5, classifies dementia as a neurocognitive
disorder. 3 Dementia may be either a major or a mild
neurocognitive disorder. To meet DSM-5 criteria for a
major neurocognitive disorder, an individual must have
evidence of significant cognitive decline, and the
decline must interfere with independence in everyday
activities (for example, assistance may be needed with
complex activities such as paying bills or managing
medications). To meet DSM-5 criteria for a mild
neurocognitive disorder, an individual must have
evidence of modest cognitive decline, but the decline
does not interfere with everyday activities (individuals
can still perform complex activities such as paying bills
or managing medications, but the activities require
greater mental effort).
When an individual has these or other symptoms of
dementia, a physician must conduct tests to identify
the cause. Different causes of dementia are associated
with distinct symptom patterns and brain abnormalities,
as described in Table 1 (see pages 6-7). Increasing
evidence from long-term observational and autopsy
studies indicates that many people with dementia,
especially those in the older age groups, have brain
abnormalities associated with more than one cause of
dementia.4-8 This is called mixed dementia.
In some cases, individuals do not have dementia,
but instead have a condition whose symptoms mimic
those of dementia. Common causes of dementia-like
symptoms are depression, delirium, side effects
from medications, thyroid problems, certain vitamin
deficiencies and excessive use of alcohol. Unlike
dementia, these conditions often may be reversed with
treatment. One meta-analysis, a method of analysis in
which results of multiple studies are examined,
reported that 9 percent of people with dementia-like
symptoms did not in fact have dementia, but had other
conditions that were potentially reversible.9
Overview of Alzheimer’s Disease
5
table 1
Causes and Characteristics of Dementia*
Cause
Characteristics
Alzheimer’s
disease
Most common cause of dementia; accounts for an estimated 60 percent to 80 percent of cases. About half of
these cases involve solely Alzheimer’s pathology; many have evidence of pathologic changes related to other
dementias. This is called mixed dementia (see mixed dementia in this table).
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, behavior changes and, ultimately, difficulty speaking, swallowing and walking.
Revised criteria and guidelines for diagnosing Alzheimer’s were proposed and published in 2011 (see pages
13-14). They recommend that Alzheimer’s be considered a slowly progressive brain disease that begins well
before clinical symptoms emerge.
The hallmark pathologies of Alzheimer’s are the progressive 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 eventually accompanied by the damage and death of neurons.
Vascular
dementia
Previously known as multi-infarct or post-stroke dementia, vascular dementia is less common as a sole cause
of dementia than Alzheimer’s, accounting for about 10 percent of dementia cases. However, it is very common
in older individuals with dementia, with about 50 percent having pathologic evidence of vascular dementia
(infarcts). In most cases, the infarcts coexist with Alzheimer’s pathology (see mixed dementia in this table).10
Impaired judgment or impaired ability to make decisions, plan or organize is more likely to be the initial
symptom, as opposed to the memory loss often associated with the initial symptoms of Alzheimer’s.
Vascular dementia occurs most commonly from blood vessel blockage or damage leading to infarcts (strokes)
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.
In the past, evidence of vascular dementia was used to exclude a diagnosis of Alzheimer’s (and vice versa).
That practice is no longer considered consistent with the pathologic evidence, which shows that the brain
changes of Alzheimer’s and vascular dementia commonly coexist. When evidence of two or more causes of
dementia are present at the same time, the individual is considered to have mixed dementia (see mixed
dementia in this table).
Dementia with
Lewy bodies
(DLB)
People with DLB have some of the symptoms common in Alzheimer’s, but are more likely to have initial or
early symptoms of sleep disturbances, well-formed visual hallucinations and slowness, gait imbalance or other
parkinsonian movement features. These features, as well as early visuospatial impairment, may occur in the
absence of significant memory impairment.
Lewy bodies are abnormal aggregations (or clumps) of the protein alpha-synuclein that accumulate in neurons.
When they develop in a part of the brain called the cortex, dementia can result. Alpha-synuclein also aggregates
in the brains of people with Parkinson’s disease (PD), in which it is accompanied by severe neuronal loss in a
part of the brain called the substantia nigra. While people with DLB and PD both have Lewy bodies, the onset
of the disease is marked by motor impairment in PD and cognitive impairment in DLB.
The brain changes of DLB alone can cause dementia. But very commonly brains with DLB have coexisting
Alzheimer’s pathology. In people with both DLB and Alzheimer’s pathology, symptoms of both diseases may
emerge and lead to some confusion in diagnosis. Vascular dementia can also coexist and contribute to the
dementia. When evidence of more than one dementia is present, the individual is said to have mixed dementia
(see mixed dementia in this table).
6
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
table 1 (cont.)
Causes and Characteristics of Dementia*
Cause
Frontotemporal
lobar degeneration (FTLD)
Characteristics
Includes dementias such as behavioral-variant FTLD, primary progressive aphasia, Pick’s disease, corticobasal
degeneration and progressive supranuclear palsy.
Typical early symptoms include marked changes in personality and behavior and 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 protein inclusions (usually tau protein or the transactive response
DNA-binding protein).
The brain changes of behavioral-variant FTLD may occur in those age 65 years and older, similar to
Alzheimer’s disease, but most people with this form of dementia develop symptoms at a younger age
(at about age 60). In this younger age group, FTLD is the second most common degenerative dementia.
Mixed dementia
Characterized by the hallmark abnormalities of more than one cause of dementia — most commonly
Alzheimer’s combined with vascular dementia, followed by Alzheimer’s with DLB, and Alzheimer’s with
vascular dementia and DLB. Vascular dementia with DLB is much less common.5-6
Recent studies suggest that mixed dementia is more common than previously recognized, with about half of
those with dementia having pathologic evidence of more than one cause of dementia.5-6
Parkinson’s
disease (PD)
dementia
Problems with movement (slowness, rigidity, tremor and changes in gait) are common symptoms of PD.
In PD, alpha-synuclein aggregates appear in an area deep in the brain called the substantia nigra. The
aggregates are thought to cause degeneration of the nerve cells that produce dopamine.
The incidence of PD is about one-tenth that of Alzheimer’s.
As PD progresses, it often results in dementia secondary to the accumulation of Lewy bodies in the cortex
(similar to DLB) or the accumulation of beta-amyloid clumps and tau tangles (similar to Alzheimer’s disease).
CreutzfeldtJakob disease
This very rare and rapidly fatal disorder impairs memory and coordination and causes behavior changes.
Results from a misfolded protein (prion) that causes other proteins throughout the brain to misfold and
malfunction.
May be hereditary (caused by a gene that runs in one’s family), sporadic (unknown cause) or caused by
a known prion infection.
A specific form called variant Creutzfeldt-Jakob disease is believed to be caused by consumption of
products from cattle affected by mad cow disease.
Normal
pressure
hydrocephalus
Symptoms include difficulty walking, memory loss and inability to control urination.
Accounts for less than 5 percent of dementia cases.11
Caused by impaired reabsorption of cerebrospinal fluid and the consequent build-up of fluid in the brain,
increasing pressure in the brain.
People with a history of brain hemorrhage (particularly subarachnoid hemorrhage) and meningitis are
at increased risk.
Can sometimes be corrected with surgical installation of a shunt in the brain to drain excess fluid.
* For more information on these and other causes of dementia, visit alz.org/dementia.
Overview of Alzheimer’s Disease
7
Alzheimer’s Disease
• Misplacing things and losing the ability to retrace
Alzheimer’s disease was first identified more than
steps.
100 years ago, but 70 years passed before it was
• Decreased or poor judgment.
recognized as the most common cause of dementia
• Withdrawal from work or social activities.
and a “major killer.” Although research has revealed a
• Changes in mood and personality, including apathy
great deal about Alzheimer’s, much is yet to be
and depression.
discovered about the precise biologic changes that
For more information about the symptoms of
cause Alzheimer’s, why it progresses more quickly in
Alzheimer’s, visit alz.org.
12
some than in others, and how the disease can be
The pace at which symptoms advance from mild to
prevented, slowed or stopped.
moderate to severe varies from person to person.
Researchers believe that early detection will be key to
As the disease progresses, cognitive and functional
preventing, slowing and stopping Alzheimer’s disease.
abilities decline. People need help with basic activities
The last 10 years have seen a tremendous growth in
of daily living, such as bathing, dressing, eating and
research on early detection. This research spurred the
using the bathroom; lose their ability to communicate;
2011 publication of proposed new diagnostic criteria
fail to recognize loved ones; and become bed-bound
and guidelines for Alzheimer’s disease (see pages
and reliant on around-the-clock care. When individuals
13-14).13-16 Under the proposed criteria, the disease
have difficulty moving, they are more vulnerable to
begins before symptoms such as memory loss appear,
infections, including pneumonia (infection of the lungs).
while earlier criteria require memory loss and a decline
Alzheimer’s-related pneumonia is often a contributing
in thinking abilities for an Alzheimer’s diagnosis to be
factor to the death of people with Alzheimer’s disease.
made. Because scientific evaluation of the proposed
criteria is ongoing, “Alzheimer’s disease” in this report
refers to the disease as defined by the earlier criteria.
17
Changes in the Brain That Are Associated
with Alzheimer’s Disease
A healthy adult brain has about 100 billion neurons,
Symptoms
each with long, branching extensions. These
Alzheimer’s disease symptoms vary among individuals.
extensions enable individual neurons to form
The most common initial symptom is a gradually
connections with other neurons. At such connections,
worsening ability to remember new information. This
called synapses, information flows in tiny bursts of
memory decline occurs because the first neurons to
chemicals that are released by one neuron and
malfunction and die are usually neurons in brain
detected by a receiving neuron. The brain contains
regions involved in forming new memories. As neurons
about 100 trillion synapses. They allow signals to travel
in other parts of the brain malfunction and die,
rapidly through the brain’s neuronal circuits, creating
individuals experience other difficulties. The following
the cellular basis of memories, thoughts, sensations,
are common symptoms of Alzheimer’s:
emotions, movements and skills.
• Memory loss that disrupts daily life.
• Challenges in planning or solving problems.
• Difficulty completing familiar tasks at home, at
work or at leisure.
• Confusion with time or place.
• Trouble understanding visual images and spatial
relationships.
• New problems with words in speaking or writing.
8
The accumulation of the protein beta-amyloid (called
beta-amyloid plaques) outside neurons and the
accumulation of an abnormal form of the protein tau
(called tau tangles) inside neurons are two of several
brain changes believed to contribute to the
development of Alzheimer’s. In Alzheimer’s disease,
information transfer at synapses begins to fail, the
number of synapses declines, and neurons eventually
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
die. The accumulation of beta-amyloid is believed to
Risk Factors for Alzheimer’s Disease
interfere with the neuron-to-neuron communication at
With the exception of the rare cases of Alzheimer’s
synapses and to contribute to cell death. Tau tangles
caused by genetic mutations, experts believe that
block the transport of nutrients and other essential
Alzheimer’s, like other common chronic diseases,
molecules inside neurons and are also believed to
develops as a result of multiple factors rather than a
contribute to cell death. The brains of people with
single cause. This section describes known risk factors
advanced Alzheimer’s show dramatic shrinkage
for Alzheimer’s. Other factors that may affect risk are
from cell loss and widespread debris from dead and
being studied.
dying neurons.
Age
The brain changes associated with Alzheimer’s may
begin 20 or more years
18-20
before symptoms appear.
The greatest risk factor for Alzheimer’s disease is age.
Most people with Alzheimer’s disease are diagnosed
The time between the initial brain changes of
at age 65 or older. People younger than 65 can also
Alzheimer’s and the symptoms of advanced
develop the disease, although this is much more rare
Alzheimer’s is considered by scientists to represent
(see the Prevalence section). While age is the greatest
the “continuum” of Alzheimer’s. At the start of the
risk factor, Alzheimer’s is not a normal part of aging
continuum, individuals are able to function normally
and age alone is not sufficient to cause the disease.
despite these brain changes. Further along the
continuum, the brain can no longer compensate for the
neuronal damage that has occurred, and individuals
show subtle decline in cognitive function. Later,
neuronal damage is so significant that individuals show
obvious cognitive decline, including symptoms such
Apolipoprotein E (APOE)-e4 Gene
The APOE gene provides the blueprint for a protein
that transports cholesterol in the bloodstream.
Everyone inherits one form of the APOE gene —
e2, e3 or e4 — from each parent:
as memory loss or confusion as to time or place.
• The e3 form is the most common,23 with about
Later still, basic bodily functions such as swallowing
60 percent of the U.S. population inheriting e3 from
are impaired.
both parents. 24
• The e4 form is carried by an estimated 20 to
Genetic Mutations That Cause Alzheimer’s Disease
30 percent of individuals; approximately 2 percent of
A small percentage of Alzheimer’s cases (an estimated
the U.S. population has two copies of e4. 23-24
1 percent or less) develop as a result of mutations to
• The e2 form is carried by an estimated 10 to
any of three specific genes. A genetic mutation is an
20 percent of the population. 23-24
21
abnormal change in the sequence of chemical pairs that
make up genes. These mutations involve the gene for
the amyloid precursor protein (APP) and the genes for
the presenilin 1 and presenilin 2 proteins. Those
inheriting a mutation to the APP or presenilin 1 genes
are guaranteed to develop Alzheimer’s. Those inheriting
a mutation in the presenilin 2 gene have a 95 percent
chance of developing the disease. 22 Individuals with
mutations in any of these three genes tend to develop
Alzheimer’s symptoms before age 65, sometimes as
early as age 30, while the vast majority of individuals
with Alzheimer’s have late-onset disease, occurring at
age 65 or later.
Having the e4 form increases one’s risk compared
with having the e3 form, while having the e2 form may
decrease one’s risk compared with the e3 form. Those
who inherit one copy of the e4 form have a three-fold
higher risk of developing Alzheimer’s than those
without the e4 form, while those who inherit two
copies of the e4 form have an 8- to 12-fold higher
risk. 25-26 In addition, those with the e4 form are more
likely to develop Alzheimer’s at a younger age than
those with the e2 or e3 forms of the APOE gene. 27
Researchers estimate that between 40 and 65 percent
of people diagnosed with Alzheimer’s have one or two
copies of the APOE-e4 gene. 23,28-29
Overview of Alzheimer’s Disease
9
Unlike inheriting a genetic mutation that causes
Cardiovascular Disease Risk Factors
Alzheimer’s, inheriting the e4 form of the APOE gene
Growing evidence suggests that the health of the brain
does not guarantee that an individual will develop
is closely linked to the overall health of the heart and
Alzheimer’s. This is also true for more than 20 recently
blood vessels. The brain is nourished by one of the
identified genes that appear to affect the risk of
body’s richest networks of blood vessels. A healthy
Alzheimer’s. These recently identified genes are
heart helps ensure that enough blood is pumped
believed to have a limited overall effect in the
through these blood vessels, and healthy blood vessels
population because they are rare or only slightly
help ensure that the brain is supplied with the oxygen-
increase risk. 30
and nutrient-rich blood it needs to function normally.
Family History
Many factors that increase the risk of cardiovascular
A family history of Alzheimer’s is not necessary for an
disease are also associated with a higher risk of
individual to develop the disease. However, individuals
dementia. These factors include smoking,33-35 obesity in
who have a parent, brother or sister with Alzheimer’s
midlife36-38 and diabetes.35,39-42 Some evidence suggests
are more likely to develop the disease than those who
that impaired glucose processing (a precursor to
do not have a first-degree relative with Alzheimer’s. 25,31
diabetes) may also result in an increased risk for
Those who have more than one first-degree relative
dementia. 36,43-44 Growing evidence also implicates
with Alzheimer’s are at even higher risk. When
midlife hypertension36,45-47 and midlife high
diseases run in families, heredity (genetics), shared
cholesterol48-49 as risk factors.
32
environmental and lifestyle factors, or both, may play
a role. The increased risk associated with having a
family history of Alzheimer’s is not entirely explained
by whether the individual has inherited the APOE-e4
risk gene.
Conversely, factors that protect the heart may also
protect the brain and reduce the risk of developing
Alzheimer’s and other dementias. Physical activity42,50-51
appears to be one of these factors. In addition,
emerging evidence suggests that consuming a diet that
Mild Cognitive Impairment (MCI)
benefits the heart, such as one that is low in saturated
MCI is a condition in which an individual has mild but
fats and rich in vegetables and fruits, may be
measurable changes in thinking abilities that are
associated with reduced Alzheimer’s and dementia
noticeable to the person affected and to family
risk.42,52-54
members and friends, but do not affect the individual’s
ability to carry out everyday activities. People with MCI,
especially MCI involving memory problems, are more
likely to develop Alzheimer’s and other dementias than
people without MCI. Revised criteria and guidelines for
diagnosis of Alzheimer’s disease published in 201113-16
Unlike genetic risk factors, many cardiovascular disease
risk factors are modifiable — that is, they can be
changed to decrease the likelihood of developing
cardiovascular disease and, possibly, Alzheimer’s and
other forms of dementia.
(see pages 13-14) suggest that in some cases MCI is
Researchers have begun to study combinations of
actually an early stage of Alzheimer’s or another
health factors and lifestyle behaviors to learn whether
dementia. However, MCI does not always lead to
they are better than individual factors and behaviors at
dementia. In some individuals, MCI reverts to normal
identifying increased risk.55
cognition or remains stable. In other cases, such as
when a medication causes cognitive impairment, MCI
is mistakenly diagnosed. Therefore, it’s important that
people experiencing cognitive impairment seek help as
soon as possible for diagnosis and possible treatment.
10
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Education
amnesia that lasts more than 30 minutes. If loss of
People with fewer years of formal education are at
consciousness or post-traumatic amnesia lasts more
higher risk for Alzheimer’s and other dementias than
than 24 hours, the injury is considered severe. Half of all
those with more years of formal education.
moderate and severe TBIs are caused by motor vehicle
56-60
Some
researchers believe that having more years of education
accidents.78 Moderate TBI is associated with twice the
builds a “cognitive reserve” that enables individuals to
risk of developing Alzheimer’s and other dementias
better compensate for changes in the brain that could
compared with no head injuries, and severe TBI is
result in symptoms of Alzheimer’s or another
associated with 4.5 times the risk.79
dementia.59,61-62 According to the cognitive reserve
hypothesis, having more years of education increases
the connections between neurons in the brain and
enables the brain to compensate for the early brain
changes of Alzheimer’s by using alternate routes of
neuron-to-neuron communication to complete a
cognitive task.
Individuals who have experienced repeated head
injuries, such as boxers, football players and combat
veterans, are at higher risk of dementia, cognitive
impairment and neurodegenerative disease than
individuals who have not experienced head injury.80-86
Evidence suggests that even repeated mild TBI might
promote neurodegenerative disease.87-89 Some of these
Some scientists believe other factors may contribute
neurodegenerative diseases, such as chronic traumatic
to or explain the increased risk of dementia among
encephalopathy, can only be distinguished from
those with lower educational attainment. These
Alzheimer’s upon autopsy.
factors include being more likely to have occupations
that are less mentally stimulating.63 In addition,
lower educational attainment may reflect lower
socioeconomic status,63 which may increase one’s
likelihood of poor nutrition and decrease one’s ability
to afford health care or obtain suggested treatments.
Social and Cognitive Engagement
Diagnosis
A diagnosis of Alzheimer’s disease is most commonly
made by an individual’s primary care physician. No
single, simple test exists to diagnose Alzheimer’s
disease. A variety of approaches and tools are available
to help make a diagnosis. They include the following:
Additional studies suggest that remaining socially
• Obtaining a medical and family history from the
and mentally active throughout life may support brain
individual, including psychiatric history and history of
health and possibly reduce the risk of Alzheimer’s
cognitive and behavioral changes.
and other dementias.64-76 Remaining socially and
• Asking a family member or other person close to the
mentally active may help build cognitive reserve,
individual to provide input about changes in thinking
but the exact mechanism by which this may occur
skills or behavior.
is unknown. More research is needed to better
• Seeking input from a specialist, such as a neurologist.
understand how social and cognitive engagement
• Conducting cognitive tests and physical and
may affect biological processes to reduce risk.
neurologic examinations.
• Having the individual undergo a magnetic resonance
Traumatic Brain Injury (TBI)
Moderate and severe TBIs increase the risk of
developing Alzheimer’s disease and other dementias.77
TBI is the disruption of normal brain function caused by
imaging (MRI) scan, which can help identify brain
changes, such as a tumor, that could explain the
individual’s symptoms.
a blow or jolt to the head or penetration of the skull by a
Before making a diagnosis of Alzheimer’s, physicians
foreign object. Not all blows or jolts to the head disrupt
may refer to medical resources such as the DSM-5 and
brain function. Moderate TBI is defined as a head injury
published diagnostic criteria that delve even further into
resulting in loss of consciousness or post-traumatic
the disease.
Overview of Alzheimer’s Disease
11
Treatment of Alzheimer’s Disease
Pharmacologic Treatment
Pharmacologic treatments employ medication to
slow or stop an illness or treat its symptoms. Six drugs
have been approved by the U.S. Food and Drug
Administration (FDA) that temporarily improve
symptoms of Alzheimer’s disease by increasing the
Non-pharmacologic therapies are often used with
the goal of maintaining or improving cognitive function,
the ability to perform activities of daily living, or overall
quality of life. They also may be used with the goal of
reducing behavioral symptoms such as depression,
apathy, wandering, sleep disturbances, agitation and
aggression.
amount of chemicals called neurotransmitters in the
Systematic reviews of published research on
brain. The effectiveness of these drugs varies from
non-pharmacologic therapies have found that some,
person to person. However, none of the treatments
such as exercise and cognitive activity (for example,
available today for Alzheimer’s disease slows or stops
gardening, word games, listening to music and cooking)
the damage to neurons that causes Alzheimer’s
show promise.91 However, few non-pharmacologic
symptoms and eventually makes the disease fatal.
therapies have been tested in randomized controlled
In December 2014, the FDA approved the sixth drug,
which combines two existing FDA-approved
Alzheimer’s drugs and is for moderate to severe
disease. Prior to that, the last approval of an Alzheimer’s
drug was in 2003. In the decade of 2002–2012, 244
drugs for Alzheimer’s were tested in clinical trials
registered with ClinicalTrials.gov, a National Institutes of
Health registry of publicly and privately funded clinical
studies.90 The drug approved in 2003 was the only drug
studies, which provide the strongest evidence of
whether a therapy is effective. In randomized controlled
studies, participants are randomly assigned to receive a
therapy or not receive a therapy, and results from the
two groups are compared. Additional research on
non-pharmacologic therapies is needed to better
evaluate their effectiveness.
Living with Alzheimer’s Disease
of the 244 tested to complete the clinical trials process
Despite the lack of disease-modifying therapies for
and receive approval. Many factors contribute to the
Alzheimer’s, studies have consistently shown that
difficulty of developing effective treatments for
active management of Alzheimer’s and other dementias
Alzheimer’s. These factors include the high cost of drug
can improve quality of life through all stages of the
development, the relatively long time needed to
disease for individuals with dementia and their
observe disease progression in Alzheimer’s, and the
caregivers.92-94 Active management includes:
structure of the brain, which is protected by the
(1) appropriate use of available treatment options,
blood-brain barrier, through which few drugs can cross.
(2) effective management of coexisting conditions,
Non-Pharmacologic Therapy
Non-pharmacologic therapies are those that employ
approaches other than medication, such as music
therapy and reminiscence therapy (therapy in which
photos and other familiar items may be used to elicit
recall). As with current pharmacologic therapies,
(3) coordination of care among physicians, other health
care professionals and lay caregivers,
(4) participation in activities and/or adult day care
programs and
(5) taking part in support groups and supportive
services.
non-pharmacologic therapies have not been shown
To learn more about each of these ways of helping to
to alter the course of Alzheimer’s disease.
manage Alzheimer’s, as well as practical information for
living with the disease and being a caregiver for an
individual with Alzheimer’s, visit alz.org.
12
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
A Modern Diagnosis
of Alzheimer’s Disease:
Proposed Criteria and Guidelines
In 2011, the National Institute on Aging
Alzheimer’s disease to be diagnosed
(as detected by brain imaging and
(NIA) and the Alzheimer’s Association
using the 1984 criteria, memory loss and
other biomarker tests) would be said to
proposed revised criteria and
a decline in thinking abilities must have
have preclinical Alzheimer’s disease.
guidelines for diagnosing Alzheimer’s
already occurred.
Those who have very mild symptoms
disease.13-16 These criteria and
guidelines updated diagnostic criteria
and guidelines published in 1984 by
the National Institute of Neurological
Disorders and Stroke and the
Alzheimer’s Association. In 2012, the
17
NIA and the Alzheimer’s Association
also proposed new guidelines to help
pathologists describe and categorize
the brain changes associated with
Alzheimer’s disease and other
dementias on autopsy.95
It is important to note that more
research is needed before the
proposed diagnostic criteria and
guidelines can be used in clinical
settings, such as in a doctor’s office.
Differences Between the
Original and Proposed Criteria
The 1984 diagnostic criteria and
guidelines were based chiefly on a
doctor’s clinical judgment about the
cause of an individual’s symptoms, taking
into account reports from the individual,
family members and friends; results of
cognitive tests; and general neurological
assessment. The new criteria and
guidelines incorporate two notable
changes:
(2) They incorporate biomarker tests.
A biomarker is a biological factor that can
be measured to indicate the presence or
absence of disease, or the risk of
developing a disease. For example, blood
glucose level is a biomarker of diabetes,
and cholesterol level is a biomarker of
would be described as having MCI due
to Alzheimer’s. Individuals whose
symptoms are more pronounced and
interfere with carrying out everyday
tasks would be said to have dementia
due to Alzheimer’s disease.
heart disease risk. Levels of certain
Preclinical Alzheimer’s Disease —
proteins in fluid (for example, levels of
In this stage, individuals have
beta-amyloid and tau in the cerebrospinal
measurable changes in the brain,
fluid and the presence of particular
cerebrospinal fluid and/or blood
groups of proteins in blood) are among
(biomarkers) that indicate the earliest
several factors being studied as possible
signs of disease, but they have not yet
biomarkers for Alzheimer’s. Finding a
developed noticeable symptoms such
simple and inexpensive test, such as a
as memory loss. This preclinical or
blood test, would be ideal for patients,
presymptomatic stage reflects current
physicians and scientists. Research is
thinking that Alzheimer’s-related brain
underway to develop such a test, but no
changes may begin 20 years or more
test to date has shown the accuracy and
before symptoms occur.18-20 Although
reliability needed to diagnose Alzheimer’s.
the 2011 criteria and guidelines identify
The Three Stages of Alzheimer’s
Disease Proposed by the
2011 Criteria and Guidelines
preclinical disease as a stage of
Alzheimer’s, they do not establish
diagnostic criteria that doctors can use
The three stages of Alzheimer’s
now. Rather, they state that additional
disease proposed by the 2011 criteria
research is needed before this stage of
and guidelines are preclinical
Alzheimer’s can be identified.
Alzheimer’s disease, mild cognitive
impairment (MCI) due to Alzheimer’s
disease, and dementia due to
(1) They identify three stages of
Alzheimer’s disease. An individual who
Alzheimer’s disease, with the first
does not yet have outward symptoms
occurring before symptoms such as
of Alzheimer’s but does have some of
memory loss develop. In contrast, for
the early brain changes of Alzheimer’s
but can still perform everyday tasks
MCI Due to Alzheimer’s Disease —
Individuals with MCI have mild but
measurable changes in thinking
abilities that are noticeable to the
person affected and to family members
and friends, but that do not affect the
Overview of Alzheimer’s Disease
13
A Modern Diagnosis
of Alzheimer’s Disease:
Proposed Criteria and Guidelines
(continued)
individual’s ability to carry out everyday
testing for people with MCI to learn
“disease-modifying” treatments) will
activities. Studies indicate that as many
whether they have biological changes
be most effective when administered
as 10 to 20 percent of people age 65 or
that put them at high risk of developing
during the preclinical and MCI stages
older have MCI.96-98 Among people
Alzheimer’s disease or another
of the disease. Biomarker tests will be
whose MCI symptoms cause them
dementia. If testing shows that
essential to identify which individuals
enough concern to contact their
changes in the brain, cerebrospinal
are in these early stages and should
physicians for an exam, as many as
fluid and/or blood are similar to the
receive disease-modifying treatment.
15 percent progress from MCI to
changes of Alzheimer’s, the proposed
They also will be critical for monitoring
dementia each year. Nearly half of all
criteria and guidelines recommend a
the effects of treatment. At this time,
people who have visited a doctor about
diagnosis of MCI due to Alzheimer’s
however, more research is needed to
MCI symptoms will develop dementia
disease. However, this diagnosis
validate the accuracy of biomarkers and
in 3 or 4 years.99
cannot currently be made, as additional
better understand which biomarker
research is needed to validate the 2011
test or combination of tests is most
criteria before they can be used in
effective in diagnosing Alzheimer’s
clinical settings.
disease. The most effective test or
When individuals in a community are
assessed, regardless of whether they
have memory or cognitive complaints,
combination of tests may differ
the estimated percentage who will
Dementia Due to Alzheimer’s
progress from MCI to Alzheimer’s is
Disease — This stage, as described by
slightly lower — up to 10 percent per
the 2011 diagnostic criteria and
year.100 Further cognitive decline is
guidelines, is characterized by quite
more likely among individuals whose
noticeable memory, thinking and
Criteria and Validating Biomarkers
MCI involves memory problems than
behavioral symptoms that, unlike MCI,
Since the revised criteria were
among those whose MCI does not
impair a person’s ability to function in
published in 2011, dozens of scientists
involve memory problems. Over a year,
daily life.
have published results of studies
most individuals with MCI who are
identified through community sampling
remain cognitively stable. Some,
primarily those without memory
problems, experience an improvement
in cognition or revert to normal
cognitive status.
101
It is unclear why
some people with MCI develop
dementia and others do not.
After accurate and reliable biomarker
tests for Alzheimer’s have been
identified, the 2011 criteria and
guidelines recommend biomarker
14
Biomarker Tests
The 2011 criteria and guidelines
identify two biomarker categories:
(1) biomarkers showing the level of
beta-amyloid accumulation in the brain
and (2) biomarkers showing that
neurons in the brain are injured or
actually degenerating.
depending on the stage of the disease
and the cause of dementia.102
Progress Toward Implementing
implementing the revised criteria in
research settings, examining the
accuracy of biomarker tests in
detecting and predicting Alzheimer’s,
and using biomarker tests to
distinguish Alzheimer’s from other
forms of dementia. Although additional
studies are needed before the revised
criteria and guidelines are ready for use
Many researchers believe that future
in physicians’ offices, preliminary
treatments to slow or stop the
evidence supporting the revised criteria
progression of Alzheimer’s disease and
and biomarker tests is growing.103-119
preserve brain function (called
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Prevalence
older Americans has
Alzheimer’s disease.
Prevalence
15
Millions of Americans have
Alzheimer’s disease and other
dementias. The number of Americans
with Alzheimer’s disease and other
dementias will grow each year as
the size and proportion of the
U.S. population age 65 and older
continue to increase. The number
will escalate rapidly in coming years
as the baby boom generation ages.
figure 1
Ages of People with Alzheimer’s Disease
in the United States, 2015
•
•
•
•
The prevalence of Alzheimer’s disease refers to the
85+ years, 38%
75-84 years, 43%
65-74 years, 15%
<65 years, 4%
proportion of people in a population who have
Alzheimer’s at a given point in time. This section
reports on the number and proportion of people with
Created from data from Hebert et al.120, A3
Alzheimer’s disease to describe the magnitude of the
burden of Alzheimer’s on the community and the health
care system. Incidence, the number of new cases per
year, is also provided as an estimate of the risk of
developing Alzheimer’s disease and other dementias
for different age groups. Estimates from selected
studies on the number and proportion of people with
Alzheimer’s and other dementias vary depending on
how each study was conducted. Data from several
studies are used in this section.
Prevalence of Alzheimer’s Disease
and Other Dementias in the United States
An estimated 5.3 million Americans of all ages have
Alzheimer’s disease in 2015. This number includes an
estimated 5.1 million people age 65 and older120, A1 and
approximately 200,000 individuals under age 65 who
have younger-onset Alzheimer’s.121
• One in nine people age 65 and older (11 percent)
has Alzheimer’s disease. A2
• About one-third of people age 85 and older
(32 percent) have Alzheimer’s disease.120
• Eighty-one percent of people who have Alzheimer’s
disease are age 75 or older (Figure 1).120, A3
The estimated number of individuals age 65 and older
with Alzheimer’s disease comes from a recent study
using the latest data from the 2010 U.S. Census and
the Chicago Health and Aging Project (CHAP), a
population-based study of chronic health diseases of
older people.120
National estimates of the prevalence of all forms of
dementia are not available from CHAP, but are available
from other population-based studies including the
Aging, Demographics, and Memory Study (ADAMS), a
nationally representative sample of older adults.122-123, A4
Based on estimates from ADAMS, 14 percent of
people age 71 and older in the United States have
dementia.122
Prevalence studies such as CHAP and ADAMS are
designed so that everyone in the study is tested for
dementia. But in the community, only about half of
those who would meet the diagnostic criteria for
Alzheimer’s disease and other dementias are
diagnosed with dementia by a physician.124-125 Because
Alzheimer’s disease is underdiagnosed, half of the
estimated 5.3 million Americans with Alzheimer’s may
not have been told by a physician that they have it.
16
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Preclinical Alzheimer’s Disease
13 percent of Americans age 45 and older reported
The estimates of the number and proportion of people
experiencing worsening confusion or memory loss, but
who have Alzheimer’s are based on commonly
77 percent had not consulted a health care professional
accepted criteria for diagnosing Alzheimer’s disease
about it.129 Individuals concerned about declines in
that have been used since 1984. These criteria are
memory and other cognitive abilities should consult a
applicable only after the onset of symptoms. But as
health care professional.
described in the Overview (see pages 13-14), revised
and the Alzheimer’s Association published in 201113-16
Differences Between Women and Men in
the Prevalence of Alzheimer’s Disease and
Other Dementias
propose that Alzheimer’s begins before the onset of
More women than men have Alzheimer’s disease and
symptoms, which aligns with what most researchers
other dementias. Almost two-thirds of Americans with
now believe. The 2011 criteria identify three stages of
Alzheimer’s are women.120, A5 Of the 5.1 million people
Alzheimer’s disease: preclinical Alzheimer’s, mild
age 65 and older with Alzheimer’s in the United States,
cognitive impairment (MCI) due to Alzheimer’s and
3.2 million are women and 1.9 million are men.120, A5
dementia due to Alzheimer’s. Because more research is
Based on estimates from ADAMS, among people age
needed to validate tests for detecting preclinical
71 and older, 16 percent of women have Alzheimer’s
Alzheimer’s and MCI due to Alzheimer’s, the number of
disease and other dementias compared with 11 percent
people in these stages is difficult to estimate. However,
of men.122,130
criteria and guidelines by National Institute on Aging
if Alzheimer’s disease could be detected before
symptoms developed, the number of people reported
to have Alzheimer’s disease would be much larger than
what is presented in this report.
There are a number of potential reasons why more
women than men have Alzheimer’s disease and other
dementias. The prevailing view has been that this
discrepancy is due to the fact that women live longer
Subjective Cognitive Decline
than men on average, and older age is the greatest risk
The experience of worsening or more frequent
factor for Alzheimer’s.130-131 Many studies of incidence
confusion or memory loss (often referred to as
(which indicates risk of developing disease) of
subjective cognitive decline) is one of the earliest
Alzheimer’s57-58,131-135 or any dementia56-57,132-133,136 have
warning signs of Alzheimer’s disease and may be a way
found no significant difference between men and
to identify people who are at high risk of developing
women in the proportion who develop Alzheimer’s or
Alzheimer’s and other dementias as well as MCI.
other dementias at any given age. However, limited new
Subjective cognitive decline does not refer to someone
research suggests that risk could be higher for women,
occasionally forgetting their keys or the name of
potentially due to biological or genetic variations or even
someone they recently met; it refers to more serious
different life experiences (for example, type and amount
issues such as having trouble remembering how to do
of education, or occupational choices).137 Data from the
things they have always done or forgetting things that
Framingham Study suggests that because men have a
they would normally know. Not all of those who
higher rate of death from cardiovascular disease than
experience subjective cognitive decline go on to
women in middle age, men who survive beyond age
develop MCI or Alzheimer’s disease and other
65 may have a healthier cardiovascular risk profile and
dementias, but many do.128 Data from the 2012
thus a lower risk for dementia than women of the same
Behavioral Risk Factor Surveillance System (BRFSS)
age, though more research is needed to support this
survey, which included questions on self-perceived
finding.138 Another large study showed that the
confusion and memory loss for 21 states, showed that
APOE-e4 genotype, the best known genetic risk factor
126-127
Prevalence
17
for Alzheimer’s disease, may have a stronger association
There is evidence that missed diagnoses of Alzheimer’s
with Alzheimer’s disease in women than men.
disease and other dementias are more common among
139-140
It is
unknown why this may be the case, but some evidence
older African-Americans and Hispanics than among
suggests an interaction between the APOE-e4
older whites,151-152 but it is unclear whether disparities in
genotype and the sex hormone estrogen.141-142 Finally,
missed diagnoses have lessened in recent years. Based
because low education is a risk factor for dementia,
on data for Medicare beneficiaries age 65 and older,
50-60
it is possible that lower educational attainment in
Alzheimer’s disease or another dementia had been
women than in men born in the first half of the 20th
diagnosed in 8 percent of white older adults,
century could account for a higher risk of Alzheimer’s
11 percent of African-Americans and 12 percent of
and other dementias in women; however, this possibility
Hispanics.153 Although rates of diagnosis were higher
has not been thoroughly investigated scientifically.
among African-Americans than among whites,
Racial and Ethnic Differences in the Prevalence of
Alzheimer’s Disease and Other Dementias
Although there are more non-Hispanic whites living with
Alzheimer’s and other dementias than people of any
other racial or ethnic group in the United States, older
according to prevalence studies that detect all people
who have dementia irrespective of their use of the
health care system, the rates should be twice as high
(approximately 16 percent instead of 11 percent). African-Americans and Hispanics are more likely than
Estimates of the Number of People with
Alzheimer’s Disease by State
older whites to have Alzheimer’s disease and other
Table 2 lists the estimated number of people age 65
dementias.143-144 A review of many studies by an expert
and older with Alzheimer’s disease by state for 2015,
panel concluded that older African-Americans are about
the projected number for 2025, and the projected
twice as likely to have Alzheimer’s and other dementias
percentage change in the number of people with
as older whites,145-146 and Hispanics are about one and
Alzheimer’s between 2015 and 2025.154, A7 Comparable
one-half times as likely to have Alzheimer’s and other
estimates and projections for other causes of dementia
dementias as older whites.146-147, A6
are not available.
Variations in health, lifestyle and socioeconomic risk
As shown in Figure 2, between 2015 and 2025 every
factors across racial groups likely account for most of
state and region across the country is expected to
the differences in risk of Alzheimer’s disease and other
experience an increase of at least 14 percent in the
dementias by race. Despite some evidence that the
number of people with Alzheimer’s due to increases in
influence of genetic risk factors on Alzheimer’s and
the population age 65 and older. The West and
other dementias may differ by race,148 genetic factors do
Southeast are expected to experience the largest
not appear to account for the large prevalence
increases in numbers of people with Alzheimer’s
differences among racial groups.149-150 Instead, health
between 2015 and 2025. These increases will have a
conditions such as cardiovascular disease and diabetes,
marked impact on states’ health care systems, as well
which increase risk for Alzheimer’s disease and other
as on families and caregivers.
dementias, are believed to account for these differences
as they are more prevalent in African-American and
Incidence of Alzheimer’s Disease
Hispanic people. Lower levels of education and other
While prevalence is the number of existing cases of a
socioeconomic characteristics in these communities
disease in a population at a given time, incidence is the
may also increase risk. Some studies suggest that
number of new cases of a disease that develop in a
differences based on race and ethnicity do not persist in
given period of time in a defined population — in this
rigorous analyses that account for these factors.57,122
case, the U.S. population age 65 or older. Incidence
provides a measure of risk for developing a disease.
18
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
table 2
Projections of Total Numbers of Americans Age 65 and Older with Alzheimer’s by State
Projected Number w/
Alzheimer’s (in thousands)
Percentage
Change
State
2015
2025 2015-2025
Projected Number w/
Alzheimer’s (in thousands)
Percentage
Change
State
2015
2025 2015-2025
Alabama
87
110
26.4
Montana
19
27
42.1
Alaska
6.4
11
71.9
Nebraska
33
40
21.2
Arizona
120
200
66.7
Nevada
39
64
64.1
Arkansas
53
67
26.4
New Hampshire
22
32
45.5
California
590
840
42.4
New Jersey
170
210
23.5
Colorado
65
92
41.5
New Mexico
36
53
47.2
Connecticut
73
91
24.7
New York
380
460
21.1
Delaware
17
23
35.3
North Carolina
160
210
31.3
District of Columbia
9.1
9.0
-1.1
North Dakota
14
16
14.3
Florida
500
720
44.0
Ohio
210
250
19.0
Georgia
130
190
46.2
Oklahoma
60
76
26.7
Hawaii
26
35
34.6
Oregon
60
84
40.0
Idaho
23
33
43.5
Pennsylvania
270
320
18.5
Illinois
210
260
23.8
Rhode Island
22
27
22.7
Indiana
110
13018.2
South Carolina
81
120
48.1
16
20
25.0
Iowa
63
73
15.9
South Dakota
Kansas
51
62
21.6
Tennessee
110
140
27.3
Kentucky
68
86
26.5
Texas
340
490
44.1
Louisiana
82
110
34.1
Utah
29
42
44.8
Maine
26
35
34.6
Vermont
12
17
41.7
Maryland
99
130
31.3
Virginia
130
190
46.2
Massachusetts120
150 25.0
Washington
100
140
40.0
Michigan
22022.2
West Virginia
36
44
22.2
180
Minnesota
89
120
34.8
Wisconsin 110 13018.2
Mississippi
51
65
27.5
Wyoming
Missouri
110
8.8
13.0
47.7
13018.2
Created from data provided to the Alzheimer’s Association by Weuve et al.154, A7
Prevalence
19
figure 2
Projected Increases Between 2015 and 2025 in Alzheimer’s Disease Prevalence by State
14.3% - 21.6% 21.7% - 26.4% 26.5% - 34.8% 34.9% - 44.1% 44.2% - 71.9%
AK
WA
MT
ME
ND
OR
VT NH
MN
ID
WI
SD
NY
WY
PA
IA
NE
NV
UT
IL
CO
CA
KS
AZ
MA
CT RI
MI
NM
IN
NC
AR
SC
MS
TX
VA
KY
TN
HI
NJ
MD DE
DC
WV
MO
OK
OH
AL
GA
LA
FL
Change from 2015 to 2025 for Washington, D.C.: -1.1%
Created from data provided to the Alzheimer’s Association by Weuve et al.154, A7
Approximately 473,000 people age 65 or older will
per 1,000 people age 85 and older. A8 Because of the
develop Alzheimer’s disease in the United States in
increasing number of people age 65 and older in the
2015. A8 The number of new cases of Alzheimer’s
United States, particularly the oldest-old, the annual
increases dramatically with age: in 2015, there will be
number of new cases of Alzheimer’s and other
approximately 61,000 new cases among people age 65
dementias is projected to double by 2050.155
to 74, 172,000 new cases among people age 75 to 84,
and 240,000 new cases among people age 85 and older
(the “oldest-old”).155, A8 This translates to approximately
two new cases per 1,000 people age 65 to 74, 13 new
cases per 1,000 people age 75 to 84, and 39 new cases
20
• Every 67 seconds, someone in the United States
develops Alzheimer’s. A9
• By mid-century, someone in the United States will
develop the disease every 33 seconds. A9
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Lifetime Risk of Alzheimer’s Disease
though results are mixed.165 These declines have largely
Lifetime risk is the probability that someone of a given
been attributed to increasing levels of education and
age will develop a condition during his or her remaining
improved control of cardiovascular risk factors.159,166
lifespan. Data from the Framingham Study were used to
Such findings are promising and suggest that
estimate lifetime risks of Alzheimer’s disease by age
identifying and reducing risk factors for Alzheimer’s and
and sex.156, A10 As shown in Figure 3, the study found
other dementias may be effective. Although these
that the estimated lifetime risk for Alzheimer’s
findings indicate that a person’s risk of dementia at any
specifically at age 65 was one in six (17 percent) for
given age may be decreasing slightly, it should be noted
women and one in 11 (9 percent) for men.156
that the total number of Americans with Alzheimer’s
and other dementias is expected to continue to
Trends in the Prevalence and Incidence of
Alzheimer’s Disease
increase dramatically because of the population’s shift
A growing number of studies indicate that the
these findings are promising, they are outweighed by
age-specific risk of Alzheimer’s and other dementias in
the aging of the population, and the social and
the United States and other higher-income Western
economic burden of Alzheimer’s and other dementias
countries may have declined in the past 25 years,
will continue to grow.
to older ages (see Looking to the Future). Thus, while
157-164
figure 3
Estimated Lifetime Risk for Alzheimer’s, by Age and Sex, from the Framingham Study
Percentage
Men
Women
25
20
20%
19%
17.2%
17%
15
12%
10
9.1%
9%
10%
5
0
Age
65
75
85
Created from data from Seshadri et al.156
Prevalence
21
Looking to the Future
• In 2010, there were an estimated 454,000 new cases
The number of Americans surviving into their 80s, 90s
of Alzheimer’s disease. By 2030, that number is
and beyond is expected to grow dramatically due to
projected to be 615,000 (a 35 percent increase), and
advances in medicine and medical technology, as well
by 2050, 959,000 (a 110 percent increase from
as social and environmental conditions.
2010).155
167
Additionally,
a large segment of the American population — the
• By 2025, the number of people age 65 and older with
baby boom generation — has begun to reach age 65
Alzheimer’s disease is estimated to reach 7.1 million
and older, when the risk for Alzheimer’s and other
— a 40 percent increase from the 5.1 million age 65
dementias is elevated. By 2030, the segment of the
and older affected in 2015.120, A12
• By 2050, the number of people age 65 and older with
U.S. population age 65 and older will increase
Alzheimer’s disease may nearly triple, from 5.1 million
substantially, and the projected 72 million older
Americans will make up approximately 20 percent of
to a projected 13.8 million, barring the development
the total population (up from 13 percent in 2010).
of medical breakthroughs to prevent or cure the
167
As the number of older Americans grows rapidly, so
too will the numbers of new and existing cases of
Alzheimer’s disease, as shown in Figure 4.120, A11
disease.120, A11 Previous estimates based on high range
projections of population growth provided by the U.S.
Census suggest that this number may be as high as
16 million.168, A13
figure 4
Projected Number of People Age 65 and Older (Total and by Age Group)
in the U.S. Population with Alzheimer’s Disease, 2010 to 2050
Millions of people
with Alzheimer’s
Ages 65-74 Ages 75-84 Ages 85+
13.8
14
11.6
12
10
8.4
8
5.8
6
4.7
4
2
0
Year
2010
2020
2030
2040
Created from data from Hebert et al.120, A11
22
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
2050
Growth of the Oldest-Old Population
Longer life expectancies and aging baby boomers will
also increase the number and percentage of Americans
who will be among the oldest-old, individuals age 85
and older. Between 2010 and 2050, the oldest-old are
expected to increase from 14 percent of all people age
65 and older in the United States to 20 percent of all
people age 65 and older.167 This will result in an
additional 13 million oldest-old people — individuals at
the highest risk for developing Alzheimer’s.167
• In 2015, about 2 million people who have Alzheimer’s
disease are age 85 or older, accounting for 38 percent
of all people with Alzheimer’s.120
• When the first wave of baby boomers reaches age
85 (in 2031), it is projected that more than 3 million
people age 85 and older will have Alzheimer’s.120
• By 2050, as many as 7 million people age 85 and
older may have Alzheimer’s disease, accounting for
half (51 percent) of all people 65 and older with
Alzheimer’s.120
Prevalence
23
Mortality and Morbidity
seniors who die in a given year
has been diagnosed with
Alzheimer’s or another dementia.
24
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Alzheimer’s disease is officially listed
as the sixth-leading cause of death in
the United States.169 It is the fifthleading cause of death for those age
65 and older.169 However, it may cause
even more deaths than official
sources recognize. Alzheimer’s is also
a leading cause of disability and poor
health (morbidity). Before a person
with Alzheimer’s dies, he or she lives
through years of morbidity as the
disease progresses.
is a contributing cause of death for more Americans than
is indicated by CDC data. A recent study using data from
the Rush Memory and Aging Project and the Religious
Orders Study supports this concept; researchers
estimated that 500,000 deaths among people age 75 and
older could be attributed to Alzheimer’s disease in the
United States in 2010 (estimates for people age 65 to 74
were not available), meaning that those deaths would not
be expected to occur in that year if those individuals did
not have Alzheimer’s.176
The situation has been described as a “blurred distinction
between death with dementia and death from
dementia.”177 According to data from the Chicago Health
and Aging Project (CHAP), an estimated 600,000 people
Deaths from Alzheimer’s Disease
age 65 and older died with Alzheimer’s in the United
It is difficult to determine how many deaths are caused
States in 2010, meaning they died after developing
by Alzheimer’s disease each year because of the way
Alzheimer’s disease.178 Of these, an estimated 400,000
causes of death are recorded. According to data from
were age 85 and older, and an estimated 200,000 were
the National Center for Health Statistics of the Centers
age 65 to 84. Furthermore, according to Medicare data,
for Disease Control and Prevention (CDC), 84,767
one-third of all seniors who die in a given year have been
people died from Alzheimer’s disease in 2013.169 The
diagnosed with Alzheimer’s or another dementia.153,179
CDC considers a person to have died from Alzheimer’s
Although some seniors who die with Alzheimer’s disease
if the death certificate lists Alzheimer’s as the
die from causes that are unrelated to Alzheimer’s, many of
underlying cause of death, defined by the World Health
them die from Alzheimer’s disease itself or from
Organization as “the disease or injury which initiated the
conditions in which Alzheimer’s was a contributing cause,
train of events leading directly to death.”
such as pneumonia. A recent study evaluating the
170
However,
death certificates for individuals with Alzheimer’s often
contribution of individual common diseases to death using
list acute conditions such as pneumonia as the primary
a nationally representative sample of older adults found
cause of death rather than Alzheimer’s.171-173 Severe
that dementia was the second largest contributor to death
dementia frequently causes complications such as
behind heart failure.180 Thus, for people who die with
immobility, swallowing disorders and malnutrition that
Alzheimer’s, the disease is expected to be a significant
can significantly increase the risk of other serious
direct contributor to their deaths.
conditions that can cause death. One such condition is
In 2015, an estimated 700,000 people in the United
pneumonia, which is the most commonly identified
States age 65 and older will die with Alzheimer’s based on
cause of death among elderly people with Alzheimer’s
CHAP data.178 The true number of deaths caused by
disease and other dementias.174-175 The number of
Alzheimer’s is likely to be somewhere between the official
people with Alzheimer’s disease who die while
estimated numbers of those dying from Alzheimer’s (as
experiencing these other conditions may not be counted
indicated by death certificates) and those dying with
among the number of people who died from
Alzheimer’s. Regardless of the cause of death, among
Alzheimer’s disease according to the CDC definition,
people age 70, 61 percent of those with Alzheimer’s are
even though Alzheimer’s disease is likely a contributing
expected to die before age 80 compared with 30 percent
cause of death. Thus, it is likely that Alzheimer’s disease
of people without Alzheimer’s.181
Mortality and Morbidity
25
Public Health Impact of Deaths
from Alzheimer’s Disease
State-by-State Deaths from
Alzheimer’s Disease
As the population of the United States ages,
Table 3 provides information on the number of deaths
Alzheimer’s is becoming a more common cause of
due to Alzheimer’s by state in 2013, the most recent
death. Although deaths from other major causes have
year for which state-by-state data are available. This
decreased significantly, official records indicate that
information was obtained from death certificates and
deaths from Alzheimer’s disease have increased
reflects the condition identified by the physician as
significantly. Between 2000 and 2013, deaths
the underlying cause of death. The table also
attributed to Alzheimer’s disease increased 71 percent,
provides annual mortality rates by state to compare
while those attributed to the number one cause of
the risk of death due to Alzheimer’s disease across
death (heart disease) decreased 14 percent
states with varying population sizes and attributes.
(Figure 5).
169
For the United States as a whole, in 2013, the
The increase in the number and
proportion of death certificates listing Alzheimer’s as
mortality rate for Alzheimer’s disease was 27 deaths
the underlying cause of death reflects both changes in
per 100,000 people.169
patterns of reporting deaths on death certificates over
time as well as an increase in the actual number of
deaths attributable to Alzheimer’s.
figure 5
Percentage Changes in Selected Causes of Death (All Ages) Between 2000 and 2013
Percentage
70
+71%
60
50
40
30
20
10
0
-2%
-10
-11%
-14%
-23%
-20
-30
-40
-52%
-50
Cause
of Death
Breast
Prostate
Heart
Stroke
HIV
Alzheimer’s
cancer
cancer
disease
disease
Created from data from the National Center for Health Statistics.169
26
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
table 3
Number of Deaths and Annual Mortality Rate (per 100,000) Due to Alzheimer’s Disease by State, 2013
State Alabama
Number of Deaths
Mortality
Rate
State Number of Deaths
Mortality
Rate
1,398
28.9
Montana
267
26.3
72
9.8
Nebraska
557
29.8
2,383
36.0
Nevada
448
16.1
Arkansas
918
31.0
New Hampshire
351
26.5
California
11,891
31.0
New Jersey
1,812
20.4
Colorado
1,316
25.0
New Mexico
339
16.3
Connecticut
824
22.9
New York
2,556
13.0
Delaware
192
20.7
North Carolina
2,872
29.2
District of Columbia
130
20.1
North Dakota
363
50.2
Florida
5,093
26.0
Ohio
3,798
32.8
Georgia
2,048
20.5
Oklahoma
1,145
29.7
Hawaii
260
18.5
Oregon
1,312
33.4
Idaho
347
21.5
Pennsylvania
3,271
25.6
Illinois
2,919
22.7
Rhode Island
346
32.9
Indiana
2,104
32.0
South Carolina
1,623
34.0
Iowa
1,252
40.5
South Dakota
418
49.5
742
25.6
Tennessee
2,536
39.0
Kentucky
1,462
33.3
Texas
5,293
20.0
Louisiana
1,50532.5
Utah
412
14.2
269
42.9
Alaska
Arizona
Kansas
Maine
401
30.2
Vermont
Maryland
919
15.5
Virginia
1,642
19.9
Massachusetts
1,699
25.4
Washington
3,277
47.0
Michigan
3,22032.5
West Virginia
590
31.8
Minnesota
1,427
26.3
Wisconsin
1,671
29.1
Mississippi
925
30.9
Wyoming
126
21.6
2,026
33.5
U.S. Total 84,767
26.8
Missouri
Created from data from the National Center for Health Statistics.169, A14
Mortality and Morbidity
27
table 4
U.S. Annual Alzheimer’s Death Rate (per 100,000) by Age
Age
20002001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013
45-54
0.2
0.2
0.1
0.2
0.2
0.2
0.2
0.2
0.2
0.2
0.3
0.2
0.2
0.2
55-64
2.0
2.1
1.9
2.0
1.8
2.1
2.1
2.2
2.2
2.0
2.1
2.2
2.2
2.2
65-74
18.7
18.6
19.6
20.7
19.5
20.2
19.9
20.2
21.1
19.4
19.8
19.2
17.9
18.1
75-84
139.6 147.2
157.7
164.1
168.5
177.0
175.0 175.8
192.5
179.1
184.5
183.9 175.4
171.6
85+
667.7 725.4
790.9
846.8
875.3
935.5
923.4 928.7 1,002.2
945.3
987.1
967.1 936.1
929.5
Created from data from the National Center for Health Statistics.169
Alzheimer’s Disease Death Rates
As shown in Figure 6, the rate of deaths attributed to
age 80 is expected for 75 percent of people with
Alzheimer’s has risen substantially since 2000.169
Alzheimer’s compared with only 4 percent of the
Table 4 shows that the rate of death from Alzheimer’s
general population.181 In all, an estimated two-thirds of
increases dramatically with age, especially after
those who die of dementia do so in nursing homes,
age 65.169 The increase in the Alzheimer’s death rate
compared with 20 percent of people with cancer and
over time has disproportionately affected the
28 percent of people dying from all other conditions.189
oldest-old.182 Between 2000 and 2013, the death rate
from Alzheimer’s did not increase for people age 65 to
Burden of Alzheimer’s Disease
74, but increased 23 percent for people age 75 to 84,
The long duration of illness before death contributes
and 39 percent for people age 85 and older. significantly to the public health impact of Alzheimer’s
Duration of Illness from
Diagnosis to Death
disease because much of that time is spent in a state of
disability and dependence. Scientists have developed
methods to measure and compare the burden of
Studies indicate that people age 65 and older survive an
different diseases on a population in a way that takes
average of 4 to 8 years after a diagnosis of Alzheimer’s
into account both the number of years of life lost due
disease, yet some live as long as 20 years with
to that disease as well as the number of healthy years
Alzheimer’s.183-188 This reflects the slow, insidious
of life lost by virtue of being in a state of disability.
progression of Alzheimer’s. On average, a person with
These measures indicate that Alzheimer’s is a very
Alzheimer’s disease will spend more years (40 percent
burdensome disease and that the burden of Alzheimer’s
of the total number of years with Alzheimer’s) in the
has increased more dramatically in the United States
most severe stage of the disease than in any other
than other diseases in recent years. The primary
stage.
measure of disease burden is called disability-adjusted
181
Much of this time will be spent in a nursing
home. Exemplifying this, nursing home admission by
28
life-years (DALYs), which is the sum of the number of
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
figure 6
U.S. Annual Alzheimer’s Death Rate (per 100,000) by Year
30
27.1
25
20
15
17.6
18.9
21.9
22.5
2003
2004
24.2
24.3
24.8
2005
2006
2007
25.8
27.0
27.3
26.6
26.8
2012
2013
20.5
10
5
0
2000
2001
2002
2008
2009
2010
2011
Created from data from the National Center for Health Statistics.169
years of life lost due to premature mortality and the
number of years lived with disability. Using this measure,
Alzheimer’s rose from the 25th most burdensome
disease in the United States in 1990 to the 12th in 2010.
No other disease or condition increased as much.190
In terms of years of life lost, Alzheimer’s disease rose
from 32nd to 9th, the largest increase for any disease.
In terms of years lived with disability, Alzheimer’s
disease went from ranking 17th to 12th; only kidney
disease equaled Alzheimer’s in as high a jump in rank.
Taken together, the numbers in this section indicate
that not only is Alzheimer’s disease responsible for the
deaths of more and more Americans, the disease is also
contributing to more and more cases of poor health and
disability in the United States.
Mortality and Morbidity
29
Caregiving
In 2014, Americans
provided nearly
billion
hours of unpaid care
to people with
Alzheimer’s disease
and other dementias.
30
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Caregiving refers to attending to
another individual’s health needs.
Caregiving often includes assistance
with one or more activities of daily
living (ADLs) such as bathing and
dressing.191-192 More than 15 million
Americans provide unpaid care for
people with Alzheimer’s disease and
other dementias. A15
United States.197-200, A16 Approximately two-thirds of
caregivers are women197-198, A16 and 34 percent are age 65
or older. A16 Over two-thirds of caregivers are married,
living with a partner or in a long-term relationship.198, A16
More than two-thirds of caregivers are non-Hispanic
white,198, A16 while 10 percent are African-American,
8 percent are Hispanic, and 5 percent are Asian. A16
Over 40 percent of dementia caregivers have a college
degree or greater education.198, A16 Forty-one percent
of caregivers have a household income of $50,000 or
less. A16 Over half of primary caregivers of people with
dementia (individuals who indicate having the most
responsibility for helping their relatives; 55 percent) take
Unpaid Caregivers
Eighty-five percent of unpaid help provided to older
adults in the United States is from family members.193
Friends may provide unpaid caregiving as well. In 2014,
caregivers of people with Alzheimer’s and other
dementias provided an estimated 17.9 billion hours of
informal (that is, unpaid) assistance, a contribution to
care of parents. 200 Most caregivers either live with the
care recipient (27 percent) or live within 20 minutes of
the care recipient (46 percent). A16 It is estimated that
250,000 children and young adults between ages 8 and
18 provide help to someone with Alzheimer’s disease or
another dementia. 201
the nation valued at $217.7 billion. This is approximately
Ethnic and Racial Diversity in Caregiving
46 percent of the net value of Walmart sales in 2013
Among caregivers of people with Alzheimer’s and other
($473.1 billion)194 and nearly eight times the total revenue
dementias, the National Alliance for Caregiving (NAC)
of McDonald’s in 2013 ($28.1 billion).195 According to a
and AARP found the following in 2009:202
recent report,196 the value of informal care (not including
•Fifty-four percent of non-Hispanic white caregivers
caregivers’ out-of-pocket costs) was nearly equal to the
assist a parent, compared with 38 percent of
costs of direct medical and long-term care of dementia. individuals from other racial/ethnic groups.
The three primary reasons caregivers decide to provide
•On average, Hispanic and African-American
care and assistance to a person with Alzheimer’s
caregivers spend more time caregiving (approximately
disease are (1) the desire to keep a family member/friend
30 hours per week) than non-Hispanic white
at home (65 percent), (2) proximity to the person with
caregivers (20 hours per week) and Asian-American
dementia (48 percent) and (3) the caregiver’s perceived
caregivers (16 hours per week).
obligation as a spouse or partner (38 percent).
A16
•Hispanic (45 percent) and African-American
(57 percent) caregivers are more likely to experience
Who Are the Caregivers?
high burden from caregiving than non-Hispanic white
Several sources have examined the demographic
caregivers (33 percent) and Asian-American
background of family caregivers of people with
caregivers (30 percent).
Alzheimer’s disease and other dementias in the
Caregiving
31
Sandwich Generation Caregivers
dementia.197 Sandwich generation caregivers indicate
Traditionally, the term “sandwich generation caregiver”
lower quality of life and diminished health behaviors
has referred to a middle-aged person who
(for example, less likely to choose foods based on
simultaneously cares for dependent minor children and
health values; less likely to use seat belts; less likely to
aging parents. The phenomenon of sandwich
exercise) compared with non-sandwich generation
generation caregiving has received a good deal of
caregivers or non-caregivers. 208-209
attention in recent years as it has been argued that
demographic changes (such as parents of dependent
Caregiving Tasks
minors being older than in the past along with the aging
The care provided to people with Alzheimer’s disease
of the U.S. population) have led to increases in the
and other dementias is wide-ranging and in some
number of sandwich generation caregivers.
instances all-encompassing. Table 5 summarizes some
203-205
National surveys have found that 23 percent of
Alzheimer’s disease and dementia caregivers lived with
children under the age of 18. A16 Other studies have
found that sandwich generation caregivers are present
in 8 to 13 percent of households in the United
States.206-207 It is not clear what proportion of care
recipients in these studies had Alzheimer’s disease or
another dementia, but in other studies of sandwich
generation caregivers about one-third of elderly care
recipients have Alzheimer’s disease or another
of the most common types of dementia care provided.
Though the care provided by family members of
people with Alzheimer’s disease and other dementias
is somewhat similar to the help provided by caregivers
of people with other conditions, dementia caregivers
tend to provide more extensive assistance. Family
caregivers of people with dementia are more likely than
caregivers of other older people to assist with any ADL
(Figure 7). More than half of dementia caregivers report
table 5
Dementia Caregiving Tasks
Help with instrumental activities of daily living (IADLs), such as household chores, shopping, preparing meals, providing
transportation, arranging for doctor’s appointments, managing finances and legal affairs and answering the telephone.
Helping the person take medications correctly, either via reminders or direct administration of medications.
Helping the person adhere to treatment recommendations for dementia or other medical conditions.
Assisting with personal activities of daily living (ADLs), such as bathing, dressing, grooming, feeding and helping
the person walk, transfer from bed to chair, use the toilet and manage incontinence.
Managing behavioral symptoms of the disease such as aggressive behavior, wandering, depressive mood, agitation,
anxiety, repetitive activity and nighttime disturbances.
Finding and using support services such as support groups and adult day service programs.
Making arrangements for paid in-home, nursing home or assisted living care.
Hiring and supervising others who provide care.
Assuming additional responsibilities that are not necessarily specific tasks, such as:
• Providing overall management of getting through the day.
• Addressing family issues related to caring for a relative with Alzheimer’s disease, including communication with
other family members about care plans, decision-making and arrangements for respite for the main caregiver.
32
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
figure 7
Proportion of Caregivers of People with Alzheimer’s and Other Dementias versus Caregivers of Other Older People
Who Provide Help with Specific Activities of Daily Living, United States, 2009
Caregivers of people with Alzheimer’s and other dementias Caregivers of other older people
Percentage
60
50
40
54%
42%
40%
30
32%
31%
31%
31%
31%
26%
20
23%
16%
14%
10
0
Activity
Getting in and
Dressing
out of bed
Getting to and
from the toilet
Bathing
Managing
incontinence and diapers
Feeding
Created from data from the National Alliance for Caregiving and AARP. 202
providing help with getting in and out of bed, and
In addition to assisting with ADLs, almost two-thirds
about one-third provide help with getting to and from
of caregivers of people with Alzheimer’s and other
the toilet, bathing, managing incontinence and feeding.
dementias advocate for their care recipient with
These findings are consistent with the heightened
government agencies and service providers (64 percent),
degree of dependency experienced by many people
and nearly half arrange and supervise paid caregivers
with Alzheimer’s disease and other dementias. Fewer
from community agencies (46 percent). By contrast,
caregivers of other older people report providing help
caregivers of other older adults are less likely to
with each of these types of care.
advocate for their family member (50 percent) and
202
Data from the 2011
National Survey of Caregiving (NSOC) indicated that
supervise community-based care (33 percent). 202
caregivers of people with dementia210 are more likely
Caregivers of people with dementia are more likely to
than caregivers of people without dementia to provide
coordinate health care for the care recipient compared
help with self-care and mobility (85 percent versus
with caregivers of people without dementia (86 percent
71 percent) and health or medical care (63 percent
versus 72 percent).197 Caring for a person with dementia
versus 52 percent).197,211 Individuals with dementia are
also means managing symptoms that family caregivers
also more likely than those without dementia to rely on
of people with other diseases may not face, such as
multiple unpaid caregivers; 39 percent of people with
neuropsychiatric symptoms and severe behavioral
dementia rely on three or more caregivers, whereas
problems. Family caregivers often lack the information
30 percent of people without dementia rely on three
or resources necessary to manage the increasing
or more unpaid individuals.197
complexity of medication regimens for people
with dementia. 212
Caregiving
33
figure 8
Proportion of Alzheimer’s and Dementia Caregivers Versus Caregivers of Other
Older People by Duration of Caregiving, United States, 2009
Caregivers of people with Alzheimer’s and other dementias Caregivers of other older people
Percentage
50
45
43%
40
35
34%
30
33%
32%
28%
25
20
23%
15
10
5
2%
0
Duration
4%
Occasionally
Less than 1 year
1– 4 years
5+ years
Created from data from the National Alliance for Caregiving and AARP. 202
When a person with Alzheimer’s or another dementia
placement, while husbands are more likely than other
moves to an assisted living residence or nursing home,
family caregivers to indicate persistent depression up to
the help provided by his or her family caregiver usually
a year following a relative’s admission to a residential
changes from the comprehensive care summarized in
care facility. 216
Table 5 (see page 32) to providing emotional support,
interacting with facility staff and advocating for
Duration of Caregiving
appropriate care. However, some family caregivers
Eighty-six percent of dementia caregivers have
continue to help with bathing, dressing and other
provided care and assistance for at least the past year,
ADLs.
according to the 2014 Alzheimer’s Association Women
213-215
Admitting a relative to a residential care
facility has mixed effects on the emotional and
and Alzheimer’s Poll. A16 Caregivers of people with
psychological well-being of family caregivers. Some
Alzheimer’s and other dementias provide care for a
studies suggest that distress remains unchanged or
longer time, on average, than caregivers of older adults
even increases after a relative is admitted to a
with other conditions. As shown in Figure 8, 43 percent
residential care facility, but other studies have found
of caregivers of people with Alzheimer’s and other
that distress declines significantly after admission.
dementias provided care for 1 to 4 years compared
215-217
The relationship between the caregiver and person
with 33 percent of caregivers of people without
with dementia may explain these discrepancies.
dementia. Similarly, 32 percent of dementia caregivers
For example, husbands, wives and daughters are
provide care for 5 years or more compared with
significantly more likely than other family caregivers to
28 percent of caregivers of people without dementia. 202
indicate persistent burden up to 12 months following
34
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Hours of Unpaid Care and
Economic Value of Caregiving
communicate effectively. Family caregivers must often
In 2014, the 15.7 million family and other unpaid
personality and behavior of a person with Alzheimer’s
caregivers of people with Alzheimer’s disease and
are affected as well, and these changes are often
other dementias provided an estimated 17.9 billion
among the most challenging for family caregivers. 218
hours of unpaid care. This number represents an
Individuals with Alzheimer’s also require increasing
average of 21.9 hours of care per caregiver per week, or
levels of supervision and personal care as the disease
1,139 hours of care per caregiver per year.
progresses. As symptoms worsen with the progression
help people with Alzheimer’s manage these issues. The
A17
With this
care valued at $12.17 per hour, A18 the estimated
of a relative’s dementia, the care required of family
economic value of care provided by family and other
members can result in increased emotional stress and
unpaid caregivers of people with dementia was
depression; new or exacerbated health problems; and
$217.7 billion in 2014. Table 6 (see pages 36-37) shows
depleted income and finances due in part to disruptions
the total hours of unpaid care as well as the value of
in employment. 219-224, A16 The intimacy and history of
care provided by family and other unpaid caregivers for
experiences and memories that are often part of the
the United States and each state. Unpaid caregivers of
relationship between a caregiver and care recipient may
people with Alzheimer’s and other dementias provided
also be threatened due to the memory loss, functional
care valued at more than $1 billion in each of 39 states.
impairment and psychiatric/behavioral disturbances that
Unpaid caregivers in each of the four most populous
can accompany the progression of Alzheimer’s disease.
states — California, Florida, New York and Texas —
Caregiver Emotional Well-Being
provided care valued at more than $14 billion.
Although caregivers report some positive feelings
Additional research is needed to estimate the future
about caregiving such as family togetherness and the
value of family care for people with Alzheimer’s disease
satisfaction of helping others,225, A16 they also report high
as the U.S. population continues to age.
levels of stress when providing care:
Caregivers of people with dementia report providing
•Based on a Level of Care Index that combined the
27 hours’ more care per month on average (92 hours
number of hours of care and the number of ADL tasks
versus 65 hours) than caregivers of people without
performed by the caregiver, fewer dementia
dementia.197 Other studies suggest that primary family
caregivers in the 2009 NAC/AARP survey were
caregivers provide particularly extensive amounts of
classified in the lowest level of burden than
care to people who have dementia. For example, a 2011
caregivers of people without dementia (16 percent
report found that primary family caregivers of people
versus 31 percent, respectively). 202
with dementia reported spending an average of 9 hours
•Approximately 18 percent of caregivers of people
per day providing help to their relatives. 200 In addition,
with dementia, in contrast to only 6 percent of
many caregivers of people with Alzheimer’s disease or
caregivers of people without dementia, indicate
another dementia provide help alone. Forty-one percent
substantial negative aspects of caregiving.197
of dementia caregivers in the 2014 Alzheimer’s
•Compared with caregivers of people without
Association poll reported that no one else provided
dementia, twice as many caregivers of people with
unpaid assistance. A16
dementia indicate substantial financial, emotional and
Impact of Alzheimer’s Disease Caregiving
Caring for a person with Alzheimer’s or another
dementia poses special challenges. For example,
people with Alzheimer’s disease experience losses in
judgment, orientation and the ability to understand and
physical difficulties.197
•Fifty-nine percent of family caregivers of people with
Alzheimer’s and other dementias rated the emotional
stress of caregiving as high or very high (Figure 9, see
page 38). A16
Caregiving
35
table 6
Number of Alzheimer’s and Dementia (AD/D) Caregivers, Hours of Unpaid Care, Economic
Value of Unpaid Care and Higher Health Care Costs of Caregivers by State, 2014*
AD/D Caregivers
State
(in thousands)
Alabama
Value of Unpaid Care
(in millions of dollars)
Higher Health Care
Costs of Caregivers
(in millions of dollars)†
301
342
$4,166
$171
Alaska
33
38
$458
$27
Arizona
314
357
$4,345
$155
Arkansas
174
198
$2,410
$97
California
1,573
1,791
$21,795
$895
Colorado
234
266
$3,243
$128
Connecticut
177
201
$2,450
$139
Delaware
52
60
$725
$40
District of Columbia
27
31
$378
$26
1,058
1,205
$14,669
$688
Georgia
506
576
$7,015
$251
Hawaii
65
74
$901
$41
Idaho
78
89
$1,084
$40
Illinois
589
671
$8,163
$362
Indiana
332
379
$4,608
$201
Iowa
134
152
$1,853
$84
Kansas
150
171
$2,075
$92
Kentucky
269
306
$3,725
$161
Louisiana
230
262
$3,186
$142
68
78
$946
$53
Maryland
289
329
$4,001
$197
Massachusetts
329
374
$4,554
$277
Michigan
508
578
$7,035
$305
Minnesota
248
282
$3,430
$167
Mississippi
205
234
$2,846
$122
Missouri
312
355
$4,326
$198
Florida
Maine
36
Hours of Unpaid Care
(in millions)
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
table 6 (cont.)
Number of Alzheimer’s and Dementia (AD/D) Caregivers, Hours of Unpaid Care, Economic
Value of Unpaid Care and Higher Health Care Costs of Caregivers by State, 2014*
AD/D Caregivers
State
(in thousands)
Hours of Unpaid Care (in millions)
Value of Unpaid Care
(in millions of dollars)
Higher Health Care
Costs of Caregivers
(in millions of dollars)†
Montana
48
55
$668
$29
Nebraska
81
92
$1,117
$52
140
159
$1,937
$73
65
74
$905
$47
New Jersey
447
509
$6,189
$308
New Mexico
106
121
$1,467
$64
1,017
1,158
$14,091
$771
448
510
$6,208
$263
30
34
$414
$21
Ohio
594
676
$8,229
$382
Oklahoma
220
250
$3,046
$130
Oregon
175
199
$2,422
$105
Pennsylvania
671
765
$9,304
$472
Rhode Island
53
60
$731
$40
295
336
$4,092
$169
37
42
$514
$24
422
480
$5,847
$245
1,331
1,516
$18,446
$716
142
162
$1,969
$65
Vermont
30
34
$413
$21
Virginia
452
514
$6,259
$258
Washington
324
369
$4,485
$200
West Virginia
108
123
$1,499
$75
Wisconsin
191
218
$2,650
$127
Wyoming
28
32
$384
$18
15,706
17,886
$217,670
$9,733
Nevada
New Hampshire
New York
North Carolina
North Dakota
South Carolina
South Dakota
Tennessee
Texas
Utah
U.S. Totals
*State totals may not add up to the U.S. total due to rounding.
Created from data from the 2009 BRFSS, U.S. Census Bureau, Centers for Medicare and Medicaid Services, National Alliance for Caregiving,
AARP and U.S. Department of Labor. A13, A15, A16, A17
†
Higher health care costs are the dollar amount difference between the weighted per capita personal health care spending of caregivers and
non-caregivers in each state. A19
Caregiving
37
•Many family caregivers report “a good amount” to
“a great deal” of caregiving strain concerning
financial issues (47 percent). A16
•Approximately 40 percent of family caregivers of
people with dementia suffer from depression,
compared with 5 to 17 percent of non-caregivers of
similar ages.223, 226-229 Rates of depression increase
with the severity of cognitive impairment of the
figure 9
Proportion of Alzheimer’s and Dementia
Caregivers Who Report High or Very High Emotional
and Physical Stress Due to Caregiving
Percentage
High to very high Not high to somewhat high
80
60
person with dementia. 230-231
•In the 2009 NAC/AARP survey, caregivers most likely
40
41%
to indicate stress were women, older, residing with
the care recipient, and white or Hispanic.
202
•According to the 2014 Alzheimer’s Association poll,
62%
59%
38%
20
0
respondents often believed they had no choice in
Stress
taking on the role of caregiver. A16
Emotional stress of
caregiving
Physical stress of
caregiving
•The 2014 Alzheimer’s Association poll found that
women with children under age 18 felt that caregiving
Created from data from the Alzheimer’s Association.A16
for someone with Alzheimer’s disease was more
challenging than caring for children (53 percent). A16
•When caregivers report being stressed because of
Caregiver Physical Health
the impaired person’s behavioral symptoms, it
For some caregivers, the demands of caregiving may
increases the chance that they will place the care
cause declines in their own health. Evidence suggests
recipient in a nursing home. 202,232
that the stress of dementia care provision increases
•Seventy-three percent of family caregivers of people
caregivers’ susceptibility to disease and health
with Alzheimer’s disease and other dementias agree
complications.237 As shown in Figure 9, 38 percent of that it is neither “right nor wrong” when families
Alzheimer’s and dementia caregivers indicate that the
decide to place their family member in a nursing
physical impact of caregiving was high to very high. A16
home. Yet many such caregivers experience feelings
Sleep disturbances, which can occur frequently when
of guilt, emotional upheaval and difficulties in
caring for a relative with Alzheimer’s disease or another
adapting to the admission transition (for example,
dementia, have also been shown to negatively influence
interacting with care staff to determine an appropriate
family caregivers’ health. 238-239
care role for the family member).
General Health
213,215,233-234, A16
•The demands of caregiving may intensify as people
with dementia approach the end of life. 235 In the year
before the person’s death, 59 percent of caregivers
felt they were “on duty” 24 hours a day, and many
felt that caregiving during this time was extremely
stressful. 236 One study of end-of-life care found that
72 percent of family caregivers experienced relief
when the person with Alzheimer’s disease or another
dementia died. 236
Seventy-four percent of caregivers of people with
Alzheimer’s disease and other dementias reported that
they were “somewhat concerned” to “very concerned”
about maintaining their own health since becoming a
caregiver. A16 Dementia caregivers were more likely than
non-caregivers to report that their health was fair or
poor. 221 Dementia caregivers were also more likely than
caregivers of other older people to say that caregiving
made their health worse. 202,240 The 2009 and 2010
Behavioral Risk Factor Surveillance System (BRFSS)
surveys found that 7 percent of dementia caregivers
38
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
say the greatest difficulty of caregiving is that it creates
were depressed, had low functional status or had
or aggravates their own health problems compared with
behavioral disturbances.255
2 percent of other caregivers.198 According to 1998–
2010 bi-annual data from the Health and Retirement
Survey, dementia caregivers were much more likely
(41 percent increased odds) to become more frail from
the period prior to the death of a spouse receiving care
to the spouse’s death. 241 Other studies suggest that
caregiving tasks have the positive effect of keeping
older caregivers more physically active than
non-caregivers. 242
Mortality
The health of a person with dementia may also affect the
caregiver’s risk of dying, although studies have reported
mixed findings on this issue. In one study, caregivers of
spouses who were hospitalized and had dementia in their
medical records were more likely to die in the following
year than caregivers whose spouses were hospitalized
but did not have dementia, even after accounting for the
age of caregivers. 256 However, other studies have found
Physiological Changes
The chronic stress of caregiving is associated with
physiological changes that could increase the risk of
developing chronic conditions. For example, a series of
recent studies found that under certain circumstances
some Alzheimer’s caregivers were more likely to have
elevated biomarkers of cardiovascular disease risk and
impaired kidney function risk than those who were not
caregivers. 243-248
that caregivers in general have lower mortality rates than
non-caregivers. 257-258 One study reported that higher
levels of stress were associated with higher rates of
mortality in both caregivers in general and
non-caregivers. 258 These findings suggest that it is high
stress, not caregiving per se, that increases the risk of
mortality. Such results emphasize that dementia
caregiving is a complex undertaking; simply providing
care to someone with Alzheimer’s disease or another
Caregivers of a spouse with Alzheimer’s or another
dementia may not consistently result in stress or
dementia are more likely than married non-caregivers to
negative health problems for caregivers. Instead, the
have physiological changes that may reflect declining
stress of dementia caregiving is influenced by a number
physical health, including high levels of stress
of other factors, such as dementia severity, how
hormones,249 reduced immune function,219,250 slow
challenging caregivers perceive certain aspects of care to
wound healing,
be, available social support and caregiver personality.
251
and increased incidence of
hypertension,252 coronary heart disease253 and impaired
All of these factors are important to consider when
endothelial function (the endothelium is the inner lining
understanding the health impact of caring for a person
of the blood vessels). Some of these changes may be
with dementia. 259
associated with an increased risk of cardiovascular
Caregiver Employment
disease. 254 Overall, the literature is fairly consistent in
Among caregivers of people with Alzheimer’s disease
suggesting that the chronic stress of dementia care can
and other dementias, 75 percent reported being
have potentially negative influences on caregiver health.
employed at any time since assuming care
responsibilities. Eighty-one percent of Alzheimer’s
Health Care
The physical and emotional impact of dementia
caregiving is estimated to have resulted in $9.7 billion in
health care costs in the United States in 2014. A19 Table 6
(see pages 36-37) shows the estimated higher health
care costs for Alzheimer’s and dementia caregivers in
each state. In separate studies, hospitalization and
emergency department visits were more likely for
dementia caregivers who helped care recipients who
caregivers under age 65 had been or were employed,
while 35 percent age 65 and older had been or were
employed. 202 Seventeen percent of dementia caregivers
had to give up their jobs before or after assuming
caregiving responsibilities. Among those who were
employed at any time since they became caregivers,
9 percent ultimately quit their jobs to continue providing
care. Fifty-four percent had to go in late or leave early,
Caregiving
39
figure 10
Work-Related Changes Among Caregivers of People with Alzheimer’s Disease and Other Dementias
Who Had Been Employed at Any Time Since They Began Caregiving
Percentage
100
80
60
54%
40
20
15%
13%
13%
Had to go from
working full- to
part-time
Had to take a less
demanding job
0
Effect
Had to go in
late/leave early/
take time off
Had to take a
leave of absence
9%
Had to give up
working entirely
8%
Lost job
benefits
8%
8%
Saw work
performance suffer
to point of possible
dismissal
Chose early
retirement
7%
Had to turn
down a
promotion
Created from data from the Alzheimer’s Association.A16
and 15 percent had to take a leave of absence. Other
been found to be particularly effective: they (1) assist
work-related challenges for dementia caregivers who
caregivers over long periods; (2) approach dementia
had been employed at any time since beginning
care as an issue for the entire family; and (3) train
caregiving are summarized in Figure 10.
dementia caregivers in the management of behavioral
A16
problems.262-265 Multicomponent approaches that
Interventions Designed to Assist Caregivers
combine individual and family counseling, education
Strategies to support family caregivers of people with
and other support over time appear especially beneficial
Alzheimer’s disease have been developed and
in helping caregivers manage changes that occur as the
evaluated. The types and focus of these strategies
care recipient’s dementia progresses. 266-267 Examples
(often called “interventions”) are summarized in
of successful multicomponent interventions are the
Table 7.260-261
New York University Caregiver Intervention,268-270 the
In general, interventions aim to improve the health and
Resources for Enhancing Alzheimer’s Caregiver
well-being of dementia caregivers by relieving the
Health (REACH) II protocol,271 the Savvy Caregiver
negative aspects of caregiving. Some also aim to delay
program,272-274 the Reducing Disability in Alzheimer’s
nursing home admission of the person with dementia.
Disease intervention275 and the Skills2Care Program.276
Specific approaches used in various interventions
Other multicomponent approaches that have recently
include helping caregivers manage dementia-related
shown promise include: (1) Partners in Dementia Care,
symptoms, improving social support for caregivers, and
a care coordination program that improves access to
providing caregivers with respite from caregiving duties.
needed services and strengthens the family support
Three characteristics distinguish interventions that have
40
network 277 and (2) Acquiring New Skills While
Enhancing Remaining Strengths (ANSWERS),278
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
table 7
Type and Focus of Caregiver Interventions
Type of Intervention
Description
Case management
Provides assessment, information, planning, referral, care coordination and/or advocacy
for family caregivers.
Psychoeducational
Includes a structured program that provides information about the disease, resources
and services, and about how to expand skills to effectively respond to symptoms of the
disease (that is, cognitive impairment, behavioral symptoms and care-related needs).
Includes lectures, discussions and written materials and is led by professionals with
specialized training.
Counseling
Aims to resolve pre-existing personal problems that complicate caregiving to reduce
conflicts between caregivers and care recipients and/or improve family functioning.
Support groups
Less structured than psychoeducational or therapeutic interventions, support groups
provide caregivers the opportunity to share personal feelings and concerns to overcome
feelings of social isolation.
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 for a certain
number of weekly hours.
Training of the person
with dementia
Includes memory clinic or similar programs aimed at improving the competence of the care
recipient, which may also have a positive effect on caregiver outcomes.
Psychotherapeutic
approaches
Involve the establishment of a therapeutic relationship between the caregiver and a
professional therapist (for 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).
Multicomponent
approaches
Are characterized by intensive support strategies that combine multiple forms of
interventions, such as education, support and respite into a single, long-term service
(often provided for 12 months or more).
Created from data from Sörensen et al. and Pinquart et al. 260-261
Caregiving
41
person with dementia to help manage symptoms such
Caregiver Interventions and Their Effects
on Care Recipients
as memory loss. Other current, promising intervention
Several reviews have sought to determine whether
strategies include care coordination and approaches in
caregiver interventions improve outcomes for care
which people with early-stage Alzheimer’s disease and
recipients who have Alzheimer’s disease or other
their family caregivers are educated together.
dementias. One recent review found that caregiver-
a program that combines training for the caregiver and
279-290
Interventions for dementia caregivers that have
demonstrated efficacy in randomized controlled
evaluations have been gradually implemented in the
community. 291-298 These implementation efforts are
generally successful at improving how caregiver
services are delivered, reaching a larger number of
families and helping caregivers cope with their
responsibilities. Because caregivers and the settings
in which they provide care are diverse, more studies
are needed to define which interventions are most
effective for specific situations. 299 Improved tools to
“personalize” services for caregivers to maximize their
benefits is an emerging area of research. 265,300 More
studies are also needed to explore the effectiveness of
interventions in different racial, ethnic, socioeconomic
and geographic settings.301-305
services for caregivers.
behavioral or psychiatric problems in care recipients
who have dementia. 309 Multicomponent interventions
for dementia caregivers have also been shown to
prevent or delay nursing home admission of the care
recipient. 310-312 However, these conclusions are not
uniform; a recent review that restricted its scope to
randomized controlled evaluations found that caregiver
interventions had no consistent effects on outcomes of
care recipients who had Alzheimer’s disease or other
dementias. 313
Paid Caregivers
Direct-Care Workers for People with Alzheimer’s
Disease and Other Dementias
Direct-care workers, such as nurse aides, home health
aides and personal and home care aides, provide most
Growing evidence supports the effectiveness of respite
306
focused interventions are effective at reducing
Recent studies of adult day
of the long-term care services and supports for older
adults (including those with Alzheimer’s disease and
service programs suggest that use of these services
other dementias). In nursing homes, nursing assistants
can improve dementia caregivers’ emotional well-being
make up the majority of staff who work with cognitively
and can have beneficial effects on biological indicators
impaired residents. 314-316 Nursing assistants help with
of stress and health for caregivers.
bathing, dressing, housekeeping, food preparation and
307-308
Although less
consistent in their demonstrated benefits, in-person and
other activities. Most nursing assistants are women,
online support groups (such as alzconnected.org) have
and they come from increasingly diverse ethnic, racial
the potential to offer encouragement and enhance
and international backgrounds.
caregiver outcomes.
Direct-care workers have difficult jobs, and they may
not receive the training necessary to provide dementia
care.315,317 One review found that direct-care workers
received, on average, 75 hours of training and that this
training included little focus on issues specific or
pertinent to dementia care. 315 Turnover rates are high
among direct-care workers, and recruitment and
retention are persistent challenges. 318 Reviews have
shown that staff training programs to improve the
quality of dementia care in nursing homes have modest,
positive benefits. 317
42
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Shortage of Geriatric Health Care Professionals
in the United States
people with dementia manage care transitions (for
Professionals who may receive special training in caring
and ensure the person with dementia’s access to
for older adults include physicians, nurse practitioners,
appropriate community-based services. Several
registered nurses, social workers, pharmacists,
evaluations have suggested that such approaches
physician assistants, case workers and others. 318 It is
have considerable potential for improving outcomes
projected that the United States will need an additional
for people with dementia and their family
3.5 million health care professionals by 2030 just to
caregivers. 324-328 Current research is attempting to
maintain the current ratio of health care professionals to
determine the feasibility of these models beyond the
the older population. 318 The need for health care
specialty settings in which they currently operate. 329
example, a change in care provider or site of care),
professionals trained in geriatrics is escalating, but few
providers choose this career path. It is estimated that
the United States has approximately half the number of
certified geriatricians that it currently needs. 319 In 2010,
there were 4,278 physicians practicing geriatric
medicine in the United States. 320 An estimated 36,000
geriatricians will be required to adequately meet the
needs of older adults in the United States by 2030. 318
Other health-related professions also have low numbers
of geriatric specialists relative to the population’s needs.
According to the Institute of Medicine, less than
1 percent of registered nurses, physician assistants and
pharmacists identify themselves as specializing in
geriatrics.318 Similarly, although 73 percent of social
workers serve clients age 55 and older and about
8 percent are employed in long-term care settings, only
4 percent have formal certification in geriatric
social work. 318
Although the complex care challenges of many people
with dementia often require the simultaneous expertise
of professionals trained in multiple care disciplines, there
is a continuing need for interprofessional collaboration
and education to enhance the overall care of people
with dementia. 321-323 Ongoing efforts have attempted to
integrate innovative care management practices
alongside traditional primary care for people with
dementia. Dementia care management often involves a
skilled professional who serves as the care “manager”
of the person with dementia. The care manager
collaborates with primary care physicians or nurse
practitioners to develop personalized care plans. These
plans can provide support to family caregivers, help
Caregiving
43
Use and Costs of Health Care,
Long-Term Care and Hospice
Total payments for health
care, long-term care and
hospice are estimated to be
in 2015 for people with
Alzheimer’s disease and
other dementias.
44
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
The costs of health care, long-term
care and hospice for individuals with
Alzheimer’s disease and other
dementias are substantial, and
Alzheimer’s disease is one of the
costliest chronic diseases to society.196
figure 11
Aggregate Cost of Care by Payment Source
for Americans Age 65 and Older with Alzheimer‘s
Disease and Other Dementias, 2015*
Total cost: $226 Billion (B)
•
•
•
•
Total payments in 2015 (in 2015 dollars) for all
individuals with Alzheimer’s disease and other
dementias are estimated at $226 billion (Figure 11).
Medicare and Medicaid are expected to cover
$153 billion, or 68 percent, of the total health care and
long-term care payments for people with Alzheimer’s
disease and other dementias. Out-of-pocket spending
Medicare
$113 B, 50%
Medicaid
$41 B, 18%
Out of pocket
$44 B, 19%
Other
$29 B, 13%
is expected to be $44 billion, or 19 percent of
total payments. A20
*Data are in 2015 dollars.
TOTAL COST OF Health Care,
Long-Term Care and Hospice
Table 8 (see page 46) reports the average annual
Created from The Lewin Model. A20 “Other” payment sources include
private insurance, health maintenance organizations, other managed care
organizations and uncompensated care. Totals for payment sources may not
add to total cost due to rounding.
per-person payments for health care and long-term care
services for Medicare beneficiaries age 65 and older
disease and other dementias ($11,021) were 19 times
with and without Alzheimer’s disease and other
as great as average Medicaid payments for Medicare
dementias. Unless otherwise indicated, all costs in this
beneficiaries without Alzheimer’s disease and other
section are reported in 2014 dollars.
dementias ($574) (Table 8).179
A21
Total per-person
health care and long-term care payments in 2014 from
all sources for Medicare beneficiaries with Alzheimer’s
and other dementias were three times as great as
payments for other Medicare beneficiaries in the same
age group ($47,752 per person for those with dementia
compared with $15,115 per person for those without
dementia).179, A22
Despite these and other sources of financial assistance,
individuals with Alzheimer’s disease and other
dementias still incur high out-of-pocket costs. These
costs are for Medicare and other health insurance
premiums and for deductibles, copayments and
services not covered by Medicare, Medicaid or
additional sources of support. Medicare beneficiaries
Twenty-nine percent of older individuals with
age 65 and older with Alzheimer’s and other dementias
Alzheimer’s disease and other dementias who have
paid $10,202 out of pocket, on average, for health care
Medicare also have Medicaid coverage, compared with
and long-term care services not covered by other
11 percent of individuals without dementia.
179
Medicaid
sources (Table 8).179 Average per-person out-of-pocket
pays for nursing home and other long-term care
payments were highest ($19,642 per person) for
services for some people with very low income and
individuals living in nursing homes and assisted living
low assets, and the high use of these services by
facilities and were almost six times as great as the
people with dementia translates into high costs for the
average per-person payments for individuals with
Medicaid program. Average Medicaid payments per
Alzheimer’s disease and other dementias living in
person for Medicare beneficiaries with Alzheimer’s
the community.179
Use and Costs of Health Care, Long-Term Care and Hospice
45
table 8
Average Annual Per-Person Payments for Health Care and Long-Term Care Services, Medicare Beneficiaries
Age 65 and Older, with and without Alzheimer’s Disease and Other Dementias and by Place of Residence, in 2014 Dollars
Beneficiaries with Alzheimer’s Disease
and Other Dementias by Place of Residence
Payment
Source
Overall
Community-Dwelling Beneficiaries
without Alzheimer’s
Residential Facility
Disease and
Other Dementias
Medicare
$21,585
$19,223
$24,884
$8,191
Medicaid
11,021
242
26,086
574
297
427
117
335
Uncompensated
HMO
1,083
1,681
247
1,579
Private insurance
2,463
2,707
2,122
1,657
986
178
2,115
156
10,202
3,449
19,642
2,487
Other payer
Out of pocket
Total*
$47,75228,102
75,217
15,115
*Payments from sources do not equal total payments exactly due to the effect of population weighting. Payments for all beneficiaries
with Alzheimer’s disease and other dementias include payments for community-dwelling and facility-dwelling beneficiaries.
Created from unpublished data from the Medicare Current Beneficiary Survey for 2008.179
figure 12
Reasons for Hospitalization of Individuals with Alzheimer’s Disease:
Percentage of Hospitalized Individuals by Admitting Diagnosis*
Percentage
30
25
26%
20
15
17%
10
9%
5
6%
5%
0
Reasons
for
Hospitalization
Syncope, fall
and trauma
Ischemic heart
disease
Gastrointestinal
Pneumonia
disease
Delirium, mental
status change
*All hospitalizations for individuals with a clinical diagnosis of probable or possible Alzheimer’s disease
were used to calculate percentages. The remaining 37 percent of hospitalizations were due to other reasons.
Created from data from Rudolph et al. 331
46
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Recently, researchers evaluated the additional or
changing dressings and administering tube feedings. 332
“incremental” health care and caregiving costs of
There are 349 skilled nursing facility stays per 1,000
dementia (that is, the costs specifically attributed to
beneficiaries with Alzheimer’s and other dementias
dementia when comparing people with and without
compared with 39 stays per 1,000 beneficiaries for
dementia who have the same coexisting medical
people without these conditions.179
conditions and demographic characteristics).
196,330
One group of researchers found that the incremental
health care and nursing home costs for those with
dementia was $28,501 per year in 2010 dollars
($31,864 in 2014 dollars).196, A21, A23
Use and Costs of Health Care Services
•Home health care. Twenty-three percent of Medicare
beneficiaries age 65 and older with Alzheimer’s
disease and other dementias have at least one home
health care visit during the year, compared with
10 percent of Medicare beneficiaries age 65 and older
without Alzheimer’s and other dementias.153
People with Alzheimer’s disease and other dementias
Differences in health care use between individuals with
have more than three times as many hospital stays per
and without dementia are most prominent for those
year as other older people.
residing in the community. Based on data from the
179
Moreover, the use of
health care services for people with other serious
Health and Retirement Study, community-residing
medical conditions is strongly affected by the presence
individuals with dementia were more likely to have a
or absence of dementia. In particular, people with
potentially preventable hospitalization, an emergency
coronary artery disease, diabetes, chronic kidney
department visit that was potentially avoidable, and
disease, chronic obstructive pulmonary disease (COPD),
an emergency department visit that resulted in a
stroke or cancer who also have Alzheimer’s and other
hospitalization. 333 For individuals residing in a nursing
dementias have higher use and costs of health care
home, there were no differences in the likelihood
services than people with these medical conditions but
of being hospitalized or having an emergency
no coexisting dementia.
department visit.
Use of Health Care Services
Preventable hospitalizations are one common measure
Older people with Alzheimer’s disease and other
dementias have more hospital stays, skilled nursing
facility stays and home health care visits than other
older people.
•Hospital. There are 780 hospital stays per 1,000
of health care quality. Preventable hospitalizations are
hospitalizations for conditions that could have been
avoided with better access to or quality of preventive
and primary care. Based on data from the 2006 to 2008
Health and Retirement Study and Medicare, preventable
hospitalizations represented 25 percent of the total
Medicare beneficiaries age 65 and older with
hospitalizations for individuals with Alzheimer’s disease
Alzheimer’s disease and other dementias compared
and other dementias. 334 The proportion was substantially
with 234 hospital stays per 1,000 Medicare
higher, however, for African-Americans, Hispanics and
beneficiaries age 65 and older without these
individuals with low incomes. Hispanic older adults had
conditions.179 The most common reasons for
the highest proportion of preventable hospitalizations
hospitalization of people with Alzheimer’s disease are
(34 percent). Healthy People 2020, the U.S. Department
syncope (fainting), fall and trauma (26 percent);
of Health and Human Services’ initiative to achieve
ischemic heart disease (17 percent); and
10-year goals for health promotion and disease
gastrointestinal disease (9 percent) (Figure 12). 331
prevention, has set a target to reduce preventable
•Skilled nursing facility. Skilled nursing facilities provide
direct medical care that is performed or supervised by
hospitalizations for people with Alzheimer’s disease and
other dementias by 10 percent by 2020. 334
registered nurses, such as giving intravenous fluids,
Use and Costs of Health Care, Long-Term Care and Hospice
47
Costs of Health Care Services
With the exception of prescription medications, average
per-person payments for health care services (hospital,
physician and other medical provider, nursing home,
skilled nursing facility, hospice and home health care)
were higher for Medicare beneficiaries with Alzheimer’s
disease and other dementias than for other Medicare
beneficiaries in the same age group (Table 9).179 The fact
that only payments for prescription drugs were lower for
table 9
Average Annual Per-Person Payments for Health Care
Services Provided to Medicare Beneficiaries Age 65
and Older with and without Alzheimer’s Disease and Other
Dementias,
in 2014 Dollars
BeneficiariesBeneficiaries
with Alzheimer’s
without Alzheimer’s
Disease and
Disease and
Service
Other Dementias
Other Dementias
those with Alzheimer’s and other dementias underscores
Inpatient hospital
$11,370
$4,571
the lack of effective treatments available to those
Medical provider*
6,306
4,181
with dementia.
Skilled nursing facility
4,189
487
Use and Costs of Health Care Services for Individuals
Newly Diagnosed with Alzheimer’s Disease
Nursing home
19,442
864
Hospice
1,925
188
Individuals newly diagnosed with Alzheimer’s disease
Home health
1,543
498
have higher health care use and costs in the year prior to
Prescription medications** 2,889
2,945
diagnosis and in the 2 subsequent years after diagnosis
than those who do not receive this diagnosis, according
to a study of Medicare Advantage enrollees (that is,
Medicare beneficiaries enrolled in a private Medicare
health insurance plan). 335 Enrollees with a new diagnosis
*“Medical provider” includes physician, other medical provider and laboratory
services, and medical equipment and supplies.
**Information on payments for prescription drugs is only available for people who
were living in the community; that is, not in a nursing home or assisted
living facility.
Created from unpublished data from the Medicare Current Beneficiary Survey
for 2008.179
of Alzheimer’s disease had $2,529 more in health care
costs (medical and pharmacy) in the year prior to
diagnosis, $10,126 more in costs in the year following
diagnosis, and $6,251 more in costs in the second year
following diagnosis. In another study of pre-diagnosis
health care costs, Medicaid enrollees with Alzheimer’s
disease had $6,204 more in health care costs, with
$3,713 due to additional outpatient medical care and
$1,612 in additional home care and adult day care
services.336
While more work is needed to understand the underlying
causes of increased use of health care services
immediately prior to and after receiving a diagnosis of
Alzheimer’s disease, it may be attributed to care for
disability and injuries, such as falls, that might result
from the early stage of the disease;337 treatments related
to cognitive impairment or coexisting medical conditions;
and costs of diagnostic procedures.
48
table 10
Specific Coexisting Medical Conditions Among Medicare
Beneficiaries Age 65 and Older with Alzheimer’s Disease
and Other Dementias, 2009
Coexisting Condition
Percentage of Beneficiaries with
Alzheimer’s Disease and Other
Dementias Who Also Had
Coexisting Medical Condition
Coronary artery disease
30
Diabetes
29
Congestive heart failure
22
Chronic kidney disease 17
Chronic obstructive pulmonary disease 17
Stroke
14
Cancer
9
Created from unpublished data from the National 20% Sample Medicare
Fee-for-Service Beneficiaries for 2009.153
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Impact of Alzheimer’s Disease and Other
Dementias on Use and Costs of Health Care in People
with Coexisting Medical Conditions
Medicare beneficiaries with Alzheimer’s disease and other
dementias are more likely than those without dementia to
have other chronic conditions.153 Table 10 reports the
dementias have more potentially avoidable
hospitalizations for diabetes complications and
hypertension, meaning that the hospitalizations could
possibly be prevented through proactive care
management in the outpatient setting. 338
proportion of people with Alzheimer’s disease and other
Similarly, Medicare beneficiaries who have Alzheimer’s
dementias who have certain coexisting medical
and other dementias and a serious coexisting medical
conditions. In 2009, 30 percent of Medicare beneficiaries
condition have higher average per-person payments for
age 65 and older with dementia also had coronary artery
most health care services than Medicare beneficiaries
disease, 29 percent also had diabetes, 22 percent also had
who have the same medical condition without dementia.
congestive heart failure, 17 percent also had chronic
Table 11 (see page 50) shows the average per-person
kidney disease and 17 percent also had COPD.
Medicare payments for seven specific medical conditions
153
People with Alzheimer’s or other dementias and a serious
coexisting medical condition (for example, congestive
heart failure) are more likely to be hospitalized than people
with the same coexisting medical condition but without
dementia (Figure 13).153 Research has demonstrated that
Medicare beneficiaries with Alzheimer’s disease and other
among beneficiaries who have Alzheimer’s disease and
other dementias and beneficiaries who do not have
dementia.153 Medicare beneficiaries with dementia had
higher average per-person payments in all categories
except total Medicare and hospital care payments for
individuals with congestive heart failure.
figure 13
Hospital Stays per 1,000 Beneficiaries Age 65 and Older with Specified Coexisting Medical Conditions,
with and without Alzheimer’s Disease and Other Dementias, 2009
Hospital stays
With Alzheimer’s disease and other dementias
Without Alzheimer’s disease and other dementias
1,200
1,000
800
1,042
1,002
948
801
998
897
876
835
776
753
600
592
656
477
474
400
200
0
Condition
Chronic
Congestive
kidney
heart failure
disease
Chronic
obstructive
pulmonary disease
Coronary
artery disease
Stroke
Diabetes
Cancer
Created from unpublished data from the National 20% Sample Medicare Fee-for-Service Beneficiaries for 2009.153
Use and Costs of Health Care, Long-Term Care and Hospice
49
table 11
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 Disease and Other Dementias, 2009, in 2014 Dollars*
Medical Condition
by Alzheimer’s
Selected
Medical Condition
Disease/Dementia
by
Alzheimer’s Disease/
(AD/D) Status
Dementia
(AD/D) Status
Average Per-Person Medicare Payment
Total
Skilled Medicare Hospital Physician
Nursing
HomeHospice
Payments
Care Care
Facility Care Health Care
Care
Coronary artery disease
With AD/D
27,661 10,225 1,725 4,433 2,785 2,403
Without AD/D
17,157 7,347 1,319 1,351 1,199 350
Diabetes
With AD/D
26,994 9,730 1,615 4,297 2,869 2,171
Without AD/D
14,920 5,997 1,136 1,228 1,137 246
Congestive heart failure
With AD/D
26,509 11,613 1,780 4,915 2,916 3,014
Without AD/D
30,447 11,890 1,779 2,663 2,297 852
Chronic kidney disease
With AD/D
32,633 12,817 1,910 4,945 2,722 2,621
Without AD/D
25,108 10,743 1,672 2,040 1,685 543
Chronic obstructive pulmonary disease
With AD/D
30,007 10,914 1,818 4,845 2,888 2,714
Without AD/D
20,539 8,953 1,494 1,766 1,552 681
Stroke
With AD/D
28,156 10,074 1,675 4,651 2,639 2,824
Without AD/D
20,214 7,809 1,425 2,384 1,936 668
Cancer
With AD/D
25,910 9,057 1,573 3,728 2,274 2,959
Without AD/D
16,957 6,145 1,207 1,009 807 607
*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 20% Sample Medicare Fee-for-Service Beneficiaries for 2009.153
50
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Use and Costs of Long-Term Care Services
•Home care. According to state home care programs in
An estimated 58 percent of older adults with
Connecticut, Florida and Michigan, more than one-third
Alzheimer’s disease and other dementias live in the
(about 37 percent) of older people who receive
community compared with 98 percent of older adults
primarily non-medical home care services, such as
without Alzheimer’s disease and other dementias.
personal care and homemaker services, have cognitive
Of those with dementia who live in the community,
impairment consistent with dementia. 341-343
179
75 percent live with someone and the remaining
•Adult day services. Thirty-two percent of individuals
25 percent live alone.179 People with Alzheimer’s
using adult day services have Alzheimer’s disease or
disease and other dementias generally receive more
other dementias, 344 and 73 percent of adult day
care from family members and other unpaid caregivers
services programs offer specific programs for
as their disease progresses. Many people with
individuals with Alzheimer’s disease and other
dementia also receive paid services at home; in adult
dementias. 345
day centers, assisted living facilities or nursing homes;
or in more than one of these settings at different times
in the often long course of the disease. Given the
high average costs of these services (assisted living,
$42,000 per year,
339, A24
and nursing home care,
$77,380 to $87,600 per year), 339, A24 individuals often
deplete their income and assets and eventually qualify
for Medicaid. Medicaid is the only public program
that covers the long nursing home stays that most
people with dementia require in the late stages of
their illnesses.
•Assisted living. Forty-two percent of residents in
assisted living facilities (that is, housing that includes
services to assist with everyday activities, such as
medication management and meals) had Alzheimer’s
disease and other dementias in 2010. 346 Forty percent
of residents in residential care facilities, including
assisted living facilities, have Alzheimer’s disease and
other dementias. 347 Small residential care facilities
(4 to 25 beds) have a larger proportion of residents
with Alzheimer’s and other dementias than larger
facilities (49 percent versus 41 percent in facilities with
Use of Long-Term Care Services by Setting
26 to 50 beds and 38 percent in facilities with more
Most people with Alzheimer’s disease and other
than 50 beds). 347 Sixty-eight percent of residential care
dementias who live at home receive unpaid help from
facilities offer programs for residents with Alzheimer’s
family members and friends, but some also receive paid
disease and other dementias, and 68 percent use a
home- and community-based services, such as
standardized tool to screen residents for cognitive
personal care and adult day care. A study of older
impairment before or at admission. 348
people who needed help to perform daily activities —
such as dressing, bathing, shopping and managing
money — found that those who also had cognitive
impairment were more than twice as likely as those
who did not have cognitive impairment to receive paid
home care.340 In addition, those who had cognitive
impairment and received paid services used almost
•Nursing home care. Of all Medicare beneficiaries
age 65 and older with Alzheimer’s disease and other
dementias, 31 percent live in a nursing home.179
Of all Medicare beneficiaries residing in a nursing
home, 64 percent have Alzheimer’s disease and other
dementias.179
twice as many hours of care monthly as those who did
not have cognitive impairment. 340
People with Alzheimer’s and other dementias make up
a large proportion of all elderly people who receive
non-medical home care, adult day services and nursing
home care.
Use and Costs of Health Care, Long-Term Care and Hospice
51
table 12
Total Nursing Home Beds and Alzheimer’s Special Care Unit Beds by State, 2014
Alzheimer’s
Special Care
State
Total Beds
Unit Beds Alabama
Alzheimer’s
Beds as a
Percentage of
Total Beds
Alzheimer’s
Special Care
State
Total Beds
Unit Beds 26,338
1,357
5.2
Montana
6,708
534
8.0
693
37
5.3
Nebraska
15,943
959
6.0
Arizona
16,586
936
5.6
Nevada
6,016
270
4.5
Arkansas
24,673
375
1.5
New Hampshire
7,491
710
9.5
California
120,968
2,556
2.1
New Jersey
52,310
1,213
2.3
Colorado
20,401
1,967
9.6
New Mexico
6,814
529
7.8
Connecticut
27,673
1,775
6.4
New York
117,140
3,791
3.2
4,876
408
8.4
North Carolina
44,849
1,557
3.5
District of Columbia 2,766
22
0.8
North Dakota
6,153
449
7.3
Alaska
Delaware
Florida
83,513
3,922
4.7
Ohio
90,689
3,751
4.1
Georgia
39,888
1,362
3.4
Oklahoma
28,832
499
1.7
Hawaii
4,213
106
2.5
Oregon
12,263
274
2.2
Idaho
5,951
182
3.1
Pennsylvania
88,261
6,332
7.2
Illinois
99,389
4,952
5.0
Rhode Island
8,717
1,202
13.8
Indiana
60,107
5,992
10.0
South Carolina
19,631
64
0.3
Iowa
34,213
1,617
4.7
South Dakota
6,963
532
7.6
Kansas
25,751
159
0.6
Tennessee
37,442
102
0.3
Kentucky
26,779
741
2.8
Texas
135,744
2,583
1.9
Louisiana
35,533
1,403
3.9
Utah
8,577
408
4.8
6,981
349
5.0
Vermont
3,174
249
7.8
Maryland
28,073
850
3.0
Virginia
32,453
1,206
3.7
Massachusetts
48,376
3,946
8.2
Washington
21,337
871
4.1
Michigan
46,594
789
1.7
West Virginia
10,888
235
2.2
Minnesota
30,362
2,379
7.8
Wisconsin
34,060
2,574
7.6
Mississippi
18,344
200
1.1
Wyoming
2,984
312
10.5
Missouri
55,294
4,154
7.5
U.S.
Maine
1,699,77473,742
Created from data from the American Health Care Association. 349
52
Alzheimer’s
Beds as a
Percentage of
Total Beds
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
4.4
•Alzheimer’s special care units. An Alzheimer’s special
and may reflect differences in the quality of care,
care unit is a dedicated unit in a nursing home that has
although more research is needed. Additionally,
tailored services for individuals with Alzheimer’s and
researchers found that feeding tube use was highest for
other dementias. Nursing homes had a total of 73,742
people with dementia whose care was managed by a
beds in Alzheimer’s special care units in 2014,
subspecialist physician or both a subspecialist and a
a decrease of 3 percent from the previous year.
349-350
general practitioner. Feeding tube use was lower among
These Alzheimer’s special care unit beds accounted
people with dementia whose care was managed by a
for 71 percent of all special care unit beds and
general practitioner. 354
4.4 percent of all nursing home beds. Rhode Island
had the largest percentage of Alzheimer’s special care
unit beds as a proportion of total beds (13.8 percent),
while Tennessee had the smallest percentage of
Alzheimer’s special care unit beds (0.3 percent)
(Table 12).349
Research has also demonstrated a decrease in the
proportion of individuals with Alzheimer’s disease who
die in an acute care hospital, with end-of-life care
shifting to home and nursing homes.355 Additionally,
more than twice as many individuals with the disease
were receiving hospice care at the time of death
Recent research demonstrates that individuals with
in 2009 than in 2000 (48 percent in 2009 versus
dementia often move between a nursing facility,
20 percent in 2000).
hospital and home, rather than remaining in a nursing
facility. 351 In a longitudinal study of primary care patients
with dementia, researchers found that those discharged
from a nursing facility were nearly equally as likely to be
discharged home (39 percent) as discharged to a
hospital (44 percent). Individuals with dementia may
also transition between a nursing facility and hospital or
between a nursing facility, home and hospital, creating
challenges for caregivers and providers to ensure that
care is coordinated across settings. Other research has
shown that nursing home residents frequently have
burdensome transitions at the end of life, including
admission to an intensive care unit in the last month of
life, late enrollment in hospice and receipt of a feeding
tube. 352 The number of care transitions for nursing home
residents with advanced cognitive impairment varies
substantially across geographic regions of the United
States.353 Researchers also found that both the number
of transitions between health care settings and the
odds of having a feeding tube inserted at the end of life
varied across the country. Furthermore, individuals with
frequent transitions between health care settings were
more likely to have feeding tubes at the end of life, even
though feeding tube placement has little or no benefit.
These differences across geographic regions were not
explained by severity of illness, restrictions on the use
of artificial hydration and nutrition, ethnicity or gender,
Demands for nursing home services and services from
long-term care hospitals are increasing. Long-term care
hospitals serve individuals whose acute medical
conditions require long-term care. Individuals are often
transferred from the intensive care units of acute care
hospitals to long-term care hospitals for medical care
related to rehabilitation services, respiratory therapy and
pain management. Despite this increasing demand,
there have been a number of restrictions on adding
facilities and increasing the number of beds in existing
facilities. In addition, the Medicare, Medicaid and SCHIP
(State Children’s Health Insurance Program) Extension
Act of 2007 issued a 3-year moratorium on both the
designation of new long-term care hospitals and
increases in Medicare-certified beds for existing
long-term care hospitals.356 This moratorium was in
response to the need for Medicare to develop criteria
for admitting beneficiaries to long-term care hospitals,
where stays average more than 25 days. 357 The
moratorium expired in late 2012. 356,358 In 2011,
certificate-of-need programs (i.e., programs that require
approval before building new facilities and/or expanding
beds or other services) were in place in 37 states to
regulate the number of nursing home beds, and a
number of these states had implemented a certificateof-need moratorium to prevent growth in the number of
beds and/or facilities. 359
Use and Costs of Health Care, Long-Term Care and Hospice
53
Costs of Long-Term Care Services
Long-Term Care Insurance
Costs are high for care provided at home or in an adult
Enrollment in private long-term care insurance is more
day center, assisted living facility or nursing home. The
common for older adults with higher-than-average
following estimates are for all users of these services.
incomes. While only 3 percent of adults age 55 and
•Home care. The median cost for a paid non-medical
older had long-term care insurance in 2008, 19 percent
home health aide is $20 per hour, or $160 for an
with incomes greater than $100,000 had long-term
eight-hour day. 339, A24
care insurance.362 The average annual long-term care
•Adult day centers. The median cost of adult day
services is $65 per day. 339, A24 Ninety-five percent of
adult day centers provided care for people with
Alzheimer’s disease and other dementias, and
2 percent of these centers charged an additional fee
for these clients in 2012. 360
health363 and long-term care insurance policies funded
only about 7 percent of total long-term care spending in
2011, representing $25 billion of the $363 billion in
long-term care spending. 364 The private long-term care
insurance market has consolidated since 2010. Five
major insurance carriers either exited the market or
•Assisted living facilities. The median cost for basic
services in an assisted living facility is $3,500 per
month, or $42,000 per year.
insurance premium was $2,320 in 2010.362 Private
substantially increased premiums since then, making
policies unaffordable for many individuals. 365
339, A24
•Nursing homes. The average cost for a private room in
a nursing home is $240 per day, or $87,600 per year.
The average cost of a semi-private room in a nursing
home is $212 per day, or $77,380 per year. 339, A24
Affordability of Long-Term Care Services
Few individuals with Alzheimer’s disease and other
dementias have sufficient long-term care insurance or
can afford to pay out of pocket for long-term care
services for as long as the services are needed.
•Income and asset data are not available for people
with Alzheimer’s and other dementias specifically, but
50 percent of Medicare beneficiaries had incomes of
$23,983 or less, and 25 percent had incomes of
$14,634 or less in 2013 (in 2014 dollars).361
•Fifty percent of Medicare beneficiaries had total
Medicaid Costs
Medicaid covers nursing home care and long-term care
services in the community for individuals who meet
program requirements for level of care, income and
assets. To receive coverage, beneficiaries must have
low incomes. Most nursing home residents who qualify
for Medicaid must spend all of their Social Security
income and any other monthly income, except for a
very small personal needs allowance, to pay for nursing
home care. Medicaid only makes up the difference if
the nursing home resident cannot pay the full cost of
care or has a financially dependent spouse.
The federal and state governments share in managing
and funding the program, and states differ greatly in the
services covered by their Medicaid programs. Medicaid
plays a critical role for people with dementia who can
no longer afford to pay for long-term care expenses on
savings of $62,396 or less, 25 percent had savings of
their own. In 2011, 55 percent of Medicaid spending on
$11,483 or less, and 8 percent had no savings or were
long-term care was allocated to institutional care, and
in debt in 2013 (in 2014 dollars). Median savings were
the remaining 45 percent was allocated to home and
substantially lower for African-American and Hispanic
community-based services.364
Medicare beneficiaries than white Medicare
beneficiaries. 361
54
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
disease and other dementias is projected to be
Programs to Reduce Avoidable Health Care
and Nursing Home Use
$41 billion in 2015 (in 2015 dollars). A20 Total per-person
Recent research has demonstrated that two different
Medicaid payments for Medicare beneficiaries age 65
types of programs have potential for reducing avoidable
and older with Alzheimer’s and other dementias were
health care and nursing home use, with one type of
19 times as great as Medicaid payments for other
program focusing on the caregiver and the other type of
Medicare beneficiaries. Much of the difference in
program focusing on the care delivery team.
Total Medicaid spending for people with Alzheimer’s
payments for beneficiaries with Alzheimer’s and other
dementias is due to the costs associated with long-
Studies of the effectiveness of caregiver support
term care (nursing homes and other residential care
programs suggest that these programs have promise
facilities, such as assisted living facilities) and the
for reducing unnecessary emergency department visits
greater percentage of people with dementia who are
and hospitalizations and reducing transitions to
eligible for Medicaid. Medicaid paid an average of
residential care for individuals with Alzheimer’s disease
$26,086 per person for Medicare beneficiaries with
and other dementias. For example, in an evaluation of
Alzheimer’s and other dementias living in a long-term
the Dementia Care Services Program in North Dakota,
care facility compared with $242 for those with the
researchers found that hospitalizations, ambulance use,
diagnosis living in the community and an average of
emergency department visits and 911 calls decreased
$574 for older adults without the diagnosis living in the
significantly after caregivers began working with the
community and long-term care facilities (Table 8, see
program, which offered them care consultations,
page 46).
resources and referrals. 367 In another study, researchers
179
In a study of Medicaid beneficiaries with a diagnosis of
Alzheimer’s disease, researchers found significant
differences in the cost of care by race/ethnicity. 366
These results demonstrated that African-Americans
had significantly higher cost of care than whites or
Hispanics, primarily due to more inpatient care and
greater severity of illness. These differences may be
attributable to later-stage diagnosis, which may lead to
higher levels of disability while receiving care; delays in
accessing timely primary care; lack of care coordination;
and duplication of services across providers. However,
more research is needed to understand the reasons for
this health care disparity.
estimated the effects of applying the New York
University Caregiver Intervention on health care costs
and utilization in the state of Minnesota over 15 years.
They determined that this intervention, which includes
individual and family caregiver counseling sessions, an
ongoing weekly caregiver support group and telephone
counseling, would increase the number of individuals
with dementia able to continue residing in the
community by 5 percent. They also predicted that nearly
20 percent fewer individuals with dementia would die in
residential care,368 and that the delayed and reduced
number of transitions to residential care would lower
health care costs in Minnesota by $996 million over the
15-year period. More research is needed to determine
the extent to which these results apply to the broader
population of individuals with Alzheimer’s disease and
other dementias and their caregivers.
Use and Costs of Health Care, Long-Term Care and Hospice
55
Additionally, collaborative care models — models that
primary hospice diagnosis of Alzheimer’s disease
include not only geriatricians, but also social workers,
increased from 67 days in 1998 to 106 days in 2009.370
nurses and medical assistants — improve care
The average length of stay for hospice beneficiaries
coordination, thereby reducing health care costs
with a primary diagnosis of non-Alzheimer’s dementia
associated with hospitalizations, emergency
increased from 57 days in 1998 to 92 days in 2009. 370
department visits and other outpatient visits.
369
Average per-person hospice care payments for
An interprofessional memory care clinic was shown to
beneficiaries with Alzheimer’s disease and other
reduce per-person health care costs by $3,474 over a
dementias were 10 times as great as for all other
year for individuals with memory problems, compared
Medicare beneficiaries ($1,925 per person compared
with others whose care was overseen by a primary
with $188 per person).179
care provider only.369 More than half of the cost savings
was attributed to lower inpatient hospital costs. The
Projections for the Future
program was relatively low cost per person, with an
Total annual payments for health care, long-term care
average annual cost of $618.
and hospice care for people with Alzheimer’s disease
369
and other dementias are projected to increase from
Use and Costs of Hospice Care
$226 billion in 2015 to more than $1 trillion in 2050
Hospice care provides medical care, pain management
(in 2015 dollars). This dramatic rise includes a five-fold
and emotional and spiritual support for people who are
increase in government spending under Medicare and
dying, including people with Alzheimer’s disease and
Medicaid and a nearly five-fold increase in out-of-
other dementias. Hospice care also provides emotional
pocket spending. A20
and spiritual support and bereavement services for
families of people who are dying. The main purpose of
hospice is to allow individuals to die with dignity and
without pain and other distressing symptoms that often
accompany terminal illness. Individuals can receive
hospice care in their homes, assisted living residences
or nursing homes. Medicare is the primary source of
payment for hospice care, but private insurance,
Medicaid and other sources also pay for hospice care.
In 2009, 6 percent of people admitted to hospices in
the United States had a primary hospice diagnosis of
Alzheimer’s disease (61,146 people). 370 An additional
11 percent of those admitted to hospices in the
United States had a primary hospice diagnosis of
non-Alzheimer’s dementia (119,872 people). 370 Hospice
length of stay has increased over the past decade. The
average length of stay for hospice beneficiaries with a
56
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Special Report:
Disclosing a Diagnosis of
Alzheimer’s Disease
Fewer than
of people with
Alzheimer’s disease
reported being told
of their diagnosis.
Special Report: Disclosing a Diagnosis of Alzheimer’s Disease
57
Should health care providers always tell
their patients about a diagnosis? When, if
ever, is it acceptable to keep the diagnosis
from the patient, or to soften its impact by
using less-than-clear explanations?
principles of disclosure have now been elaborated
and taught. Furthermore, the benefits of disclosure to
patients have been recognized, and today nearly all
health care providers have the usual policy of disclosing
a cancer diagnosis to patients and accurately explaining
prospects for the future. 376
The principles guiding disclosure of a cancer diagnosis
A limited number of studies have explored whether
people who had been diagnosed with Alzheimer’s
disease or another dementia could recall being told
their diagnosis.371-374 The studies often found that fewer
than 50 percent of patients recalled being told their
diagnosis. The factors affecting whether individuals are
told their diagnosis are numerous and complex.
Understanding and addressing these factors may
apply equally to other diagnoses. But there is evidence
that these principles are not always applied in practice,
especially when the diagnosis involves conditions
affecting the brain. As this report will show, it is still
common for patients and their caregivers to not be
made aware of a diagnosis of Alzheimer’s disease or
dementia, or to be left with insufficient understanding
of the true nature of the diagnosis.
improve the care that patients receive, their ability to
cope with the diagnosis, and their relationships with
family members and caregivers.
Historical Context
In the 1950s and early 1960s, the issue of whether to
tell cancer patients about their diagnosis was much
discussed. In one study published in 1961, a group of
291 physicians who treated cancer patients were asked
about their usual policies regarding disclosure of a
cancer diagnosis to the patient. 375 Almost 9 in 10
(88 percent) responded that it was their usual policy to
not tell patients that they had been diagnosed with
The Dilemma’s Ancient Roots
The ancient Greeks and Romans wrestled
with the same dilemma. In one mythological
tradition, Prometheus — the giver of fire —
claims to have brought happiness to
humankind by taking away foreknowledge
of life’s duration. 377 Others disputed his
claims of benevolence, asserting that
unforeseen ills strike a heavier blow than
expected ones. 378
cancer. Reasons for not telling were varied but
generally focused on the desire to protect the patient
from harm and preserve hope. Many physicians
A Consensus for Disclosure
thought that disclosing the diagnosis could cause the
Health care providers routinely encounter the situation
patient unnecessary anxiety or depression or lead to
of having to deliver a frightening or upsetting diagnosis
thoughts of suicide. However, there was very little
to patients and perhaps to relatives, friends and loved
evidence that such concerns were justified.
ones. Like the practice of medicine itself, the ethical
Physicians also had the common perception that
principles guiding health care providers during such
cancer treatments available in 1961 were ineffective, so
there was no benefit to revealing the diagnosis. 375 The
survey even revealed that many physicians at the time
encounters have evolved during the last half century,
and today there is general agreement that patients have
the right to know and understand their diagnosis.
opposed research into how patients react to such
disclosures. Fortunately, much research was done and
58
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Several professional organizations working in the realm
told their diagnosis. For example, not receiving the
of brain health have issued statements regarding the
diagnosis may deprive patients of the opportunity to
disclosure of a diagnosis of Alzheimer’s disease or
seek other medical opinions, plan for the future, and be
another dementia. These include the Alzheimer’s
involved in decisions that could impact their health care
Association,379 Alzheimer Europe, 380 the American381
both now and in the future. Second, a person who
and Canadian Medical Associations,
does not have the mental capacity to understand their
382
the American
Psychiatric Association,383 the European Federation of
condition or treatment choices cannot give informed
Neuroscience Societies
consent to treatment. In such cases, decisions are
384
and other organizations.
385-386
Guidelines uniformly advocate revealing the diagnosis
usually made by a person representing the patient’s
to the person who has been diagnosed and doing
best interests. Unfortunately, accurately assessing a
so in clear language. Guidance from the Alzheimer’s
patient’s ability to understand the diagnosis and
Association, for example, advocates talking to the
treatment options can be challenging for the health care
affected person directly and delivering the news in
provider. 388 In Alzheimer’s, those abilities may remain
“plain but sensitive language.”
consistent for an extended period or change from day
379
However, almost all
such guidelines recognize that there may be situations
to day, or even hour to hour. 389-390 Furthermore, when
in which communicating the diagnosis to the patient
decision-making responsibilities are given to a
is not possible or practicable. Furthermore, some
caregiver, the wishes of the caregiver may not match
individuals may prefer to not be told, and that
those of the person diagnosed. Several studies have
preference must be taken into account. However, a
shown, for example, that caregivers do not want care
person with Alzheimer’s or another dementia —
recipients to be told about a diagnosis of Alzheimer’s
especially in the later stages of disease — should have
disease or another dementia, even though the
an informed and cognitively intact caregiver to ensure
caregivers would want to be told if they were the
their safety and appropriate care.
ones being diagnosed. 391-392
The widespread agreement among professionals
Truth-Telling
that people with Alzheimer’s disease or another
It was common in the past to withhold from patients
dementia should be told of their diagnosis is founded
the truth about the nature or severity of their illness.
upon general principles of medical ethics, as well as
One reason that has frequently been given for
research into the benefits and potential harms of such
withholding the truth is fear of causing distress or of
disclosure. Two ethical principles that have perhaps the
taking away hope.392 Research conducted in recent
strongest bearing on this issue are respect for patient
decades has dispelled many of these concerns,
autonomy and truth-telling.
showing that most people are able to cope with
Respect for Patient Autonomy
People have the right to make decisions about their
medical care, including mental health care. 387 One
aspect of this principle is that patients have the right to
decide whether they want to be told their diagnosis.
But there are caveats. First, decisions should be made
from an informed perspective. 388 Patients should
understand the potential benefits and drawbacks of
each decision, including the decision of whether to be
knowing about their condition and that there are many
benefits to patients being fully informed. It is now
widely recognized that truth-telling in medical diagnosis
should be the standard approach, and that more harm
than good often comes from not telling patients the
truth.387 Withholding the truth can lead to loss of trust
and cooperation among patients, family members and
health care providers, and it can actually worsen the
distress associated with the diagnosis. 386,393-395
Special Report: Disclosing a Diagnosis of Alzheimer’s Disease
59
Are People Being Told They Have
indicated conditions. For example, a Medicare
Alzheimer’s by Health Care Providers?
beneficiary with a claim that indicated a diagnosis of
Several studies have found that a large majority of
physicians and other health care providers recognize
the benefits of disclosing the diagnosis of Alzheimer’s
disease or another dementia. 396 Despite these findings
and the existence of guidelines strongly advocating
disclosure of the diagnosis, health care providers vary
widely in their practices regarding disclosure. 392,396-399
In fact, one of the goals of the federal government’s
Healthy People 2020 program is to increase awareness
Alzheimer’s disease would be asked, “Has a doctor ever
told you that you have Alzheimer’s disease?” When the
beneficiary was unavailable or unable to answer the
question, a similar question was posed to a proxy
respondent (often a family member or caregiver).
Similarly, respondents with a claim related to breast
cancer had that claim linked to their MCBS response
as to whether a doctor had ever told them they
had cancer.
of the diagnosis of Alzheimer’s disease and other
From these data, a disclosure rate was calculated to
dementias among those who have been diagnosed or
determine the percentage of respondents with a
their caregivers.
specified medical condition claim who indicated that
374
To explore recent disclosure practices, the Alzheimer’s
Association commissioned an analysis of Medicare
their doctor had told them they had that medical
condition. A26
records and responses to the Medicare Current
Disclosure rates for several common medical diagnoses
Beneficiary Survey (MCBS), a continuous survey of
are shown in Figure 14. A27 The disclosure rate for
a nationally representative sample of Medicare
Alzheimer’s disease was 45 percent. The disclosure rate
beneficiaries living in the community or in long-term
was even lower (27 percent) among those diagnosed
care facilities. About 16,000 Medicare beneficiaries
with other conditions that cause dementia. In contrast,
complete the survey in any given year, and an individual
disclosure rates were substantially higher for all other
respondent typically participates in the survey for
conditions studied except stroke. For example, among
several consecutive years. The Centers for Medicare
respondents with a Medicare claim for one of the four
and Medicaid Services maintain a database of medical
most common cancers (cancer of the breast, colon or
claims submitted by health care providers for care
rectum, lung and prostate), 93 percent reported being
provided to all Medicare beneficiaries.
told of their diagnosis. With the exception of stroke
In the current analysis, de-identified claims records
were analyzed for all people who participated in the
MCBS during 2008, 2009 and 2010. These records
(48 percent), disclosure rates were significantly lower
for people with a diagnosis of Alzheimer’s disease or
another dementia than for those with other diagnoses. A28
were used to identify individuals with at least one claim
These data suggest that people with Alzheimer’s
related to selected medical conditions, including
disease or another dementia are much less likely to be
Alzheimer’s disease, other forms of dementia, breast
told about the diagnosis by their doctors or health care
cancer, prostate cancer, lung cancer, colorectal
providers than people with other common medical
cancer,
A25
stroke, cardiovascular disease other than
conditions. This finding is consistent with several older
stroke, Parkinson’s disease, diabetes, arthritis, high
studies in which generally fewer than 50 percent of
blood pressure and high cholesterol. (Claims were used
patients with Alzheimer’s disease or dementia reported
to indicate that the person’s health care provider had
being told their diagnosis. 371-373,400 The results are also
given care because of an indicated medical condition.)
comparable with those of a more recent analysis by the
Responses on the MCBS were then analyzed to
U.S. Centers for Disease Control and Prevention, which
determine whether the respondent indicated that they
found that among people with Alzheimer’s disease or
had been told by their doctor that they had the
another dementia, they or their caregivers reported
60
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
figure 14
Disclosure Rates Among MCBS Respondents for the Indicated Medical Conditions
100
90
93%
96%
92%
91%
80
84%
70
90%
84%
81%
72%
72%
70%
60
50
40
48%
45%
30
27%
20
10
0
Other
dementia
Alzheimer’s
disease
Breast
cancer
Four most
common
cancers
combined*
Lung
cancer
Colorectal
cancer
Arthritis
Parkinson’s
Cardiovascular
disease
disease other
than stroke
High blood
Diabetes
Prostate
High
pressure
cancer
cholesterol
Stroke
*Breast, colorectal, lung and prostate cancer
Created from unpublished data from the Medicare Current Beneficiary Survey for 2008, 2009 and 2010 and Medicare claims data. A27 Values shown are
weighted to adjust the demographics of the responding sample population to match the demographics of the U.S. population.
being aware of the diagnosis in only 35 percent
another dementia were asked if a doctor had told them
of cases.
they had the disease, only about one in three
374
Previous studies have also explored the attitudes
and practices of health care providers regarding the
disclosure of a diagnosis of Alzheimer’s disease or
dementia. Practices varied widely, with 38 percent to
96 percent of health care providers reporting that they
usually disclose the diagnosis to the person with
Alzheimer’s or dementia. 396
(33 percent) and one in five (18 percent), respectively,
responded “Yes.” However, when the respondent was
a proxy, they were more likely to report having been
told that the beneficiary had been diagnosed with
Alzheimer’s disease or another dementia (53 percent
and 50 percent, respectively). The reason for this
difference between beneficiary and proxy respondents
is unclear; however, even in the best case scenario, the
Many studies reported that health care providers were
disclosure rate is barely more than half of cases. Other
more likely to disclose the diagnosis to caregivers than
diagnoses involving brain conditions, such as stroke and
to affected persons, with 64 percent to 100 percent of
Parkinson’s disease, also showed differences between
health care providers reporting they disclose the
beneficiaries and proxy respondents, although the
diagnosis to caregivers. 396,400 The current analysis also
differences were not as prominent as for Alzheimer’s
explored this possibility. Figure 15 (see page 62) shows
and other dementias. One complicating factor in these
the responses according to whether the respondent
results is that people with severe Alzheimer’s or another
was the Medicare beneficiary or a proxy respondent. dementia are more likely to have proxy respondents
Notably, when people with Alzheimer’s disease or
Special Report: Disclosing a Diagnosis of Alzheimer’s Disease
61
than people in earlier stages. Thus, the greater
for which the person needed assistance. Disclosure
disclosure rates reported by proxy respondents
rates consistently and significantly varied according to
compared to beneficiary respondents could be due to
only two of these factors — the number of ADLs and
the presence of more severe disease in people who
IADLs for which the person needed assistance
required proxy respondents.
(Figures 16 and 17). A29
In the current analysis commissioned by the
Activities of daily living are those self-care activities that
Alzheimer’s Association, several factors were explored
are fundamental to day-to-day life, including walking,
to determine if they influenced whether respondents
getting into and out of bed, bathing, dressing, toileting
reported that a doctor had told beneficiaries about their
and eating. Instrumental ADLs are less fundamental to
diagnosis of Alzheimer’s disease or another dementia.
daily living, but still promote the ability to lead an
Factors included the beneficiary’s age, sex, race or
independent lifestyle. These include such activities as
ethnicity, income level, education level, geographic
housework, shopping, managing one’s own prescribed
region, and the patient’s degree of impairment as
medications, using the phone or other forms of
assessed by the number of activities of daily living
communication, and traveling within the community by
(ADLs) and instrumental activities of daily living (IADLs)
means such as driving or using public transit.
figure 15
Disclosure Rates According to Whether the Respondent was a Beneficiary or a Caregiver
Percentage
Medicare beneficiary Caregiver
100
95%
90
88%
80
90%
86%
85%
82%
83%
82%
75%
70
73%
69%
60
71%
67%
58%
50
50%
45%
40
30
64%
62%
33%
20
18%
10
0
Other
dementia
Alzheimer’s
disease
Cardiovascular
disease other
than stroke
Four most
common
cancers
combined*
Arthritis
High blood
pressure
Stroke
Parkinson’s
disease
High
cholesterol
Diabetes
*Breast, colorectal, lung and prostate cancer
Created from unpublished data from the Medicare Current Beneficiary Survey for 2008, 2009 and 2010 and Medicare claims data. A27
62
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
figure 17
figure 16
Disclosure Rates According to the Beneficiary’s
Degree of Disability as Determined by the Number
of ADLs for Which Assistance Was Needed
Percentage
0
1 or 2
3 or more
0
Percentage
60
1 or 2
3 or more
60
59%
57%
50
50
44%
40
30
Disclosure Rates According to the Beneficiary’s
Degree of Disability as Determined by the Number
of IADLs for Which Assistance Was Needed
40
38%
35%
20
22%
10
11%
0
41%
30
20
32%
22%
19%
23%
10
0
Alzheimer’s disease
Other dementia
Alzheimer’s disease
Other dementia
Created from unpublished data from the Medicare Current Beneficiary
Survey for 2008, 2009 and 2010 and Medicare claims data. A27
Created from unpublished data from the Medicare Current Beneficiary
Survey for 2008, 2009 and 2010 and Medicare claims data. A27
As shown in Figures 16 and 17 for ADLs and IADLs,
remember. 392 In other situations, there is sometimes
respectively, when the beneficiary had more severe
greater reluctance to reveal the diagnosis to someone
disability, they or their proxy were more likely to report
who has mild disease because of fear about how they
being told of the diagnosis of Alzheimer’s disease or
may react.400
dementia than when the beneficiary had less severe
disability. These findings may indicate that health care
providers are more likely to disclose the diagnosis when
disability is more severe. It also may be a consequence
of the fact that patients with more severe disability
have had the disease longer and, therefore, have had
more opportunities for the diagnosis to be disclosed to
them. Previous studies have had conflicting results
regarding whether patients with mild disease are more
or less likely to be told their diagnosis than patients
with more severe disease.401-403 In some situations,
health care providers may choose not to directly
disclose the diagnosis to people with severe disease
because such patients are not likely to understand or
Some Caveats
One problem common to many studies of people with
Alzheimer’s disease and other causes of dementia is that
the diseases themselves may affect the ability of the
affected people to remember being told their diagnosis.
The current analysis argues against this explanation
because disclosure rates were higher among
beneficiaries with more severe disability (as measured by
the number of ADLs and IADLs for which they needed
assistance) than beneficiaries with less severe disability.
In addition, even the proxy respondent numbers are very
low — only about 50 percent — so it is unlikely that
inability to recall disclosure is a significant factor.
Special Report: Disclosing a Diagnosis of Alzheimer’s Disease
63
However, studies have found that a large percentage of
Communication Difficulties. Many providers find
people with dementia and even some caregivers were
that disclosure of the diagnosis is one of the most
unable to accurately recall the diagnosis soon after being
challenging aspects of the diagnostic process, 398,405
told. 371,373 This underscores the need for continued efforts
and there have been calls for educational programs
by health care providers to ensure that the diagnosis is
to improve the communication skills of providers to
disclosed fully and carefully. Another problem is that some
address this barrier.407-408 Providers may also be
patients and even some caregivers may deny the
concerned about whether disclosure of the diagnosis
diagnosis or use denial as a way to cope with the
will be understood and accepted by patients or
diagnosis.404 Using only the data shown here, it is not
caregivers. 371,373,392
possible to determine how many people may have
reported not being told of their diagnosis because of
denial or failure to accurately remember being told.
Reasons Cited for Not Disclosing a Diagnosis
MCBS data do not contain information about why people
are not told of their diagnosis, but numerous studies have
explored this issue from the perspectives of health care
“Deliver the news in plain but sensitive
language. This may be one of the most
important things I ever hear. Please use
language that I can understand and is
sensitive to how this may make me feel.”
— Alzheimer’s Association Early-Stage Advisor
providers, caregivers and people with Alzheimer’s or
another dementia. 376,397-398
Diagnostic Uncertainty. Health care providers frequently
Fear of Causing Emotional Distress. This is one of the
cite the complexity and uncertainty of the diagnosis as one
reasons most commonly cited by family members and
barrier to disclosure.
health care providers for not disclosing the diagnosis or
125,376,405
A further complication is that
diagnostic uncertainty may prompt referral to a specialist,
for disguising its true nature. 392 However, studies that
which itself may reveal the suspicion of Alzheimer’s or
have explored this issue have found that few patients
dementia. Ongoing efforts are focused on developing
become depressed or have other long-term emotional
educational programs for health care providers to improve
problems because of the diagnosis.403,409-411 One study
their diagnostic skills related to dementia.406
concluded that “physicians can provide a suspected
Time Constraints and Lack of Support. Disclosing a
diagnosis of Alzheimer’s or another dementia to a patient
usually requires discussion of treatment options and
support services, as well as education about the disease
and what to expect. In many health care settings,
providers have insufficient time to dedicate to such
activities.405 Physicians and other health care providers
have also noted that there are insufficient resources and
services, including insufficient geriatric specialists and
interdisciplinary teams, to provide patients and caregivers
with the support needed at the time of diagnosis
and afterward.407
64
dementia diagnosis without fear of prompting a
catastrophic emotional reaction in most individuals with
early-stage dementia.”412 Although there has been fear
of suicide, the evidence indicates that it is very
uncommon.413 Certainly, many patients experience
initial shock, fear, distress, anger or other emotions, but
true clinical depression is uncommon.395,411-412 In one
study, only 6 percent of people diagnosed with
Alzheimer’s disease or another dementia had clinical
depression after 1 year, and those requiring treatment
for depression were likely to have had a history of
depression.395
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
Patient or Caregiver Wishes. Studies have shown that
family members and health care providers and to avoid
most patients want to be told if they have been
discussing memory problems.415 Similarly, health care
diagnosed with Alzheimer’s or another dementia, but
providers may avoid the issue to spare the patient from
some patients prefer not to be told. Although most
a potentially stigmatizing diagnosis.415
caregivers support disclosure of the diagnosis to the
patient,392,398 sometimes family members and
Benefits of Disclosing a Diagnosis
caregivers request that the patient not be told. 391-392
Several studies have found benefits to promptly and
These requests usually stem from concern that the
clearly explaining a diagnosis of dementia to the affected
affected person will have a distressing emotional
person and that person’s caregiver(s).376,397-398,409
response to the disclosure. Such requests can create a
dilemma for providers, who must choose between
respecting the patient’s autonomy or the wishes of
caregivers and family members. Recent guidance
generally advocates for holding the patient’s wishes as
the highest priority.414
Better Diagnosis. When a patient understands their
diagnosis, they have the opportunity to seek other
medical opinions or the advice of specialists. The
decision to withhold the diagnosis rests on the
assumption that the diagnosis is correct. However,
several reversible conditions can mimic dementia,
Lack of Disease-Modifying Treatment. In one study,
including depression, thyroid dysfunction, vitamin
25 percent of health care providers indicated that the
deficiency and sleep disruption.416 Concern about having
lack of treatments to modify the course of disease was
to tell a patient that they have Alzheimer’s disease or
a factor in choosing not to disclose a diagnosis to
another dementia has been cited as one barrier to early
patients. 392 However, informed patients and caregivers
diagnosis.407 However, early diagnosis is associated with
have better access to support services, are more able
numerous benefits regardless of whether a treatment
to participate in decision-making, and are better able to
is available.416
adapt to the diagnosis.
Better Decision-Making. When a patient is fully aware
Stigma. The stigma experienced by some people
of their diagnosis in the early stages of the disease, the
diagnosed with Alzheimer’s disease or another
patient is likely to be competent to understand options
dementia is very real and can have detrimental
and provide informed consent for current and future
consequences.415 The stigma can vary widely between
treatment options, including participation in research
cultures. In one study conducted in Italy, some
studies. In this way, the affected person can ensure that
caregivers expressed the opinion that it was
their desires and preferences are known, which may
disrespectful for a health care provider to tell an older
help them get better medical care and may contribute
person that they had dementia. 386 In other cultural
to advancing research toward better treatments.401,409
settings, patients expressed the sense that their friends
Furthermore, when people are actively involved in
afforded them less esteem after the diagnosis than
decision-making about their care, they are more likely
before.
to follow a treatment plan and take steps to maintain
415
Patients may even attach a stigma to their
own diagnosis, viewing a diagnosis of Alzheimer’s or
another dementia differently than they would other
“physical” conditions, even though the symptoms of
Alzheimer’s and other dementias are manifestations of
physical changes in the brain. As a consequence, it is
common for patients to disguise their symptoms from
their health.
Better Medical Care. Studies have shown that when
patients understand their diagnosis and are active
participants in the decision-making process, the quality
of care they receive is better than the care received by
uninformed patients.417-419
Special Report: Disclosing a Diagnosis of Alzheimer’s Disease
65
Respect for the Patient’s Wishes. Although studies of
the opinions and attitudes of patients with memory
complaints are limited, the evidence indicates that most
patients with mild dementia want to be told their
diagnosis.395,398,420
“It’s unfortunate I waited a year to get a diagnosis because that meant an additional year of worry, concern and hiding my issues from family and friends. I was exhausting myself needlessly when getting a diagnosis actually simplified and improved my life greatly.”
— Lou B., an individual living with Alzheimer’s disease
“People can overprotect you, which robs
you of your independence much quicker.”
— Person with dementia 421
Planning for the Future. Prompt disclosure of the
Knowing the diagnosis can also help caregivers prepare
diagnosis allows patients and caregivers to get legal
for and adapt to their role,403 which can reduce the
and financial affairs in order with the full and informed
perceived burden of caregiving.422
consent of the affected person.
Access to Services. Knowing the diagnosis allows
Understanding Changes. People affected by memory
patients and caregivers to obtain information about
loss and their caregivers are often aware that
support services and make plans to use such services.
something is not right. Knowing the diagnosis can help
Accessing support services can help patients and
them understand the symptoms they have felt or
caregivers cope with the diagnosis and behavior
observed. Among caregivers, knowledge of the
changes that may accompany it.403,420
diagnosis and disease characteristics can help them
better appreciate their loved one’s remaining
capacities.403 Safety. Awareness of the diagnosis allows caregivers
to take steps to ensure the affected person’s
environment is safe and may help caregivers take
Coping. Although the initial disclosure can be shocking,
precautionary steps to determine when certain
distressing or embarrassing, being aware of the
activities (such as driving) may need to be curtailed.
diagnosis gives patients and their caregivers the
opportunity to express their fears and grief and to adopt
positive strategies for coping with the diagnosis.403,409
Health care professionals are frequently concerned that
patients and their caregivers will lose hope or become
depressed when they learn of the diagnosis, but
several studies have found these concerns to be
Social Support. Knowing the diagnosis helps affected
people focus on spending quality time with loved ones,
garnering social support, appreciating what life has to
offer and possibly traveling or fulfilling long-held wishes.
The Process of Disclosure
unwarranted or overemphasized. 396 Some patients and
The analysis described in this report gives only a
caregivers express relief when they finally know the
snapshot of whether patients or caregivers report being
diagnosis; it removes uncertainty and gives them the
told by a doctor that they or a care recipient have
opportunity to develop a plan of action.412 Some
Alzheimer’s disease or another dementia. Just as
caregivers have expressed that knowing the diagnosis
important is how the diagnosis is disclosed and who
allows them to blame the disease for changes in their
should be involved. Although autonomy of the individual
loved one’s behavior, rather than blaming the person.
is important, those involved in the diagnostic process
66
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
are encouraged to include family and other current or
approaches.396,414,424,426 These approaches represent a
future caregivers during the disclosure process.
distinct skill set, and providers have recognized the
414
Specific guidelines for an optimal diagnostic disclosure
process are hindered by the lack of systematic studies
and inconsistency of desired approaches of patients and
caregivers. Some caregivers want to be told directly and
others would like a gentler explanation.423 However,
need for training programs to help them improve their
skills in this setting.407-408 Efforts to improve how health
care providers diagnose and manage Alzheimer’s
disease and dementia include educational components
designed to improve the disclosure process.406,414,420
the disclosure process should be ongoing to ensure
understanding of the diagnosis and any needed changes
in the follow-up plans for the patient and family.414,424
It has been shown that a contributor to the caregivers’
dissatisfaction with the disclosure process is lack of
“Recognize that I am an individual and the
way I experience this disease is unique.” — Alzheimer’s Association Early-Stage Advisor
follow-up appointments and limited information about
community services.423
To best provide diagnostic disclosure and appropriate
connection to resources and services, providers need to
consider the ability of the patient and caregiver to
understand and cope with the diagnosis, the social and
cultural context in which the patient lives,425 and whether
Conclusion
Despite widespread recognition of the benefits of clear
and accurate disclosure, the practices of health care
providers vary widely. In several studies, including the
the patient has a strong support network.424
current analysis of Medicare records, fewer than half of
Providers sometimes tell patients about the diagnosis
dementia reported being told the diagnosis by their
without using the words “Alzheimer’s” or “dementia,”
perhaps in an attempt to soften the emotional impact of
the diagnosis.376,398,409 But such lack of clarity can lead
to confusion for both patients and family members 405
and may endanger trust between patients and the
medical team.409
patients with a diagnosis of Alzheimer’s or another
health care provider. Although caregivers were more
likely to report disclosure, more than 45 percent did not
report disclosure. Because of the complexity of the
diagnostic and disclosure processes, varying
preferences of patients and caregivers, and different
support networks and coping mechanisms among
patients, it is recognized that the disclosure process
“Tell the truth. Even if you don’t have all the
answers, be honest about what you do know
and why you believe it to be so.”
— Alzheimer’s Association Early-Stage Advisor
should be managed in a way that respects each
patient’s situation and that of their families and
caregivers. Furthermore, health care providers have
recognized the need for stronger support systems
for themselves and for patients newly diagnosed
with Alzheimer’s disease or another dementia.
Using a standard approach for disclosing a diagnosis is
not likely to be satisfactory because the same approach
can be perceived by different patients and caregivers as
either too blunt or too indirect. 396,398,426 Such difficulties
Improvements in such systems have the potential
to improve the care of individual patients and reduce
the burden of disease on both caregivers and health
care providers.
have led to calls for the disclosure process to be
managed in ways that are sensitive to each patient’s and
family’s individual circumstances, using patient-centered
Special Report: Disclosing a Diagnosis of Alzheimer’s Disease
67
End Notes
A1. Number of Americans age 65 and older with Alzheimer’s disease
for 2015 (prevalence of Alzheimer’s in 2015): The number 5.1 million is
from published prevalence estimates based on incidence data from the
Chicago Health and Aging Project (CHAP) and population estimates
from the 2010 U.S. Census.120
A2. Proportion of Americans age 65 and older with Alzheimer’s
disease: The 11 percent is calculated by dividing the estimated number
of people age 65 and older with Alzheimer’s disease (5.1 million) by
the U.S. population age 65 and older in 2015, as projected by the
U.S. Census Bureau (47.7 million) = 11 percent. Eleven percent is the
same as one in nine. (see 2012 National Population Projections:
Summary Tables located at http://www.census.gov/population/
projections/data/national/2012/summarytables.html)
A3. Percentage of total Alzheimer’s disease cases by age groups:
Percentages for each age group are based on the estimated 200,000
under 65, plus the estimated numbers (in millions) for people 65 to 74
(0.8), 75 to 84 (2.3), and 85+ (2.0) based on prevalence estimates for
each age group and incidence data from the Chicago Health and Aging
Project (CHAP).120
A4. Differences between CHAP and ADAMS estimates for Alzheimer’s
disease prevalence: The Aging, Demographics, and Memory Study
(ADAMS) estimates the prevalence of Alzheimer’s disease to be lower
than does the Chicago Health and Aging Project (CHAP), at 2.3 million
Americans age 71 and older in 2002.122 [Note that the CHAP estimates
referred to in this end note are from an earlier study using 2000
U.S. Census data.168] At a 2009 conference convened by the National
Institute on Aging and the Alzheimer’s Association, researchers
determined that this discrepancy was mainly due to two differences in
diagnostic criteria: (1) a diagnosis of dementia in ADAMS required
impairments in daily functioning and (2) people determined to have
vascular dementia in ADAMS were not also counted as having
Alzheimer’s, even if they exhibited clinical symptoms of Alzheimer’s.123
Because the more stringent threshold for dementia in ADAMS may
miss people with mild Alzheimer’s disease and because clinicalpathologic studies have shown that mixed dementia due to both
Alzheimer’s and vascular pathology in the brain is very common,6 the
Association believes that the larger CHAP estimates may be a more
relevant estimate of the burden of Alzheimer’s disease in the
United States.
A5. Number of women and men age 65 and older with Alzheimer’s
disease in the United States: The estimates for the number of
U.S. women (3.2 million) and men (1.9 million) age 65 and older with
Alzheimer’s in 2013 is from unpublished data from the Chicago Health
and Aging Project (CHAP). For analytic methods, see Hebert et al.120
A6. Prevalence of Alzheimer’s disease and other dementias in older
whites, African-Americans and Hispanics: The statement that
African-Americans are twice as likely and Hispanics one and one-half
times as likely as whites to have Alzheimer’s disease and other
dementias is the conclusion of an expert review of a number of
multiracial and multi-ethnic data sources, as reported in detail in the
Special Report of the Alzheimer’s Association’s 2010 Alzheimer’s
Disease Facts and Figures.
A7. State-by-state prevalence of Alzheimer’s disease: These state-bystate prevalence numbers are based on an analysis of incidence data
from the Chicago Health and Aging Project (CHAP), projected to each
state’s population, with adjustments for state-specific age, gender,
years of education, race and mortality.154 Specific prevalence numbers
projected for each year from 2015 to 2025 derived from this analysis
were provided to the Alzheimer’s Association by a team led by
Liesi Hebert, Sc.D., Rush University Institute on Healthy Aging.
68
A8. Number of new cases of Alzheimer’s disease this year (incidence of
Alzheimer’s in 2015): The East Boston Established Populations for
Epidemiologic Study of the Elderly (EPESE) estimated that there would
be 454,000 new cases in 2010 and 491,000 new cases in 2020. See
Hebert et al.155 The Alzheimer’s Association calculated that the
incidence of new cases in 2015 would be 461,400 by multiplying the
10-year change from 454,000 to 491,000 (37,000) by 0.5 (for the
number of years from 2010 to 2015 divided by the number of years
from 2010 to 2020), adding that result (18,500) to the Hebert et al.
estimate for 2010 (454,000) = 472,500.155 Rounded to the nearest
thousand, this is 473,000 new cases of Alzheimer’s disease in 2015.
The same technique for linear interpolation from 2000 to 2010
projections was used to calculate the number of new cases in 2015 for
ages 65–74, 75–84, and 85 and older. The age group-specific
Alzheimer’s disease incident rate is the number of new people with
Alzheimer’s per population at risk (the total number of people in the age
group in question). These incidence rates are expressed as number of
new cases per 1,000 people. Hebert et al. used the 2015 projected
population generated from the 2000 U.S. Census to estimate
age-specific rates, and these calculations depended on a particular
5-year age structure of the older adult population (e.g., percentage age
65–69, 70–74, etc.). To maintain compatibility with these calculations,
we used the total number of people per age group (e.g., 65–74, 75–84,
85+) for 2015 from population projections from the 2000 U.S. Census
(see 2000 National Population Projections: Summary Tables located at
http://www.census.gov/population/projections/files/natproj/summary/
np-t3-d.pdf).
A9. Number of seconds for the development of a new case of
Alzheimer’s disease: Although Alzheimer’s does not present suddenly
like stroke or heart attack, the rate at which new cases occur can be
computed in a similar way. The 67 seconds number is calculated by
dividing the number of seconds in a year (31,536,000) by the number of
new cases in a year. A8 The number of seconds in a year (31,536,000)
divided by 472,500 = 66.7 seconds, rounded to 67 seconds. Using the
same method of calculation for 2050, 31,536,000 divided by 959,000
[from Hebert et al.155] = 32.8 seconds, rounded to 33 seconds.
A10. Criteria for identifying subjects with Alzheimer’s disease and other
dementias in the Framingham Study: Starting in 1975, nearly 2,800
people from the Framingham Study who were age 65 and free of
dementia were followed for up to 29 years. Standard diagnostic criteria
(DSM-IV criteria) were used to diagnose dementia in the Framingham
Study, but, in addition, the subjects had to have at least “moderate”
dementia according to the Framingham Study criteria, which is
equivalent to a score of 1 or more on the Clinical Dementia Rating (CDR)
Scale, and they had to have symptoms for six months or more. Standard
diagnostic criteria (the NINCDS–ADRDA criteria from 1984) were used
to diagnose Alzheimer’s disease. The examination for dementia and
Alzheimer’s disease is described in detail in Seshadri et al.130 The
definition of Alzheimer’s disease and other dementias used in the
Framingham Study was thus very strict; using a definition that includes
milder disease and disease of less than six months’ duration, lifetime
risks of Alzheimer’s disease and other dementias would be much higher
than those estimated by this study.
A11. Projected number of people with Alzheimer’s disease: This comes
from the CHAP study.120 Other projections are somewhat lower [see, for
example, Brookmeyer et al.427] because they relied on more
conservative methods for counting people who currently have
Alzheimer’s disease. A8 Nonetheless, these estimates are statistically
consistent with each other, and all projections suggest substantial
growth in the number of people with Alzheimer’s disease over the
coming decades.
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
A12. Projected number of people age 65 and older with Alzheimer’s
disease in 2025: The number 7.1 million is based on a linear
extrapolation from the projections of prevalence of Alzheimer’s for the
years 2020 (5.8 million) and 2030 (8.4 million) from CHAP.120
A13. Previous high and low projections of Alzheimer’s disease
prevalence in 2050: High and low prevalence projections for 2050 from
the U.S. Census were not available for the most recent analysis of
CHAP data.120 The previous high and low projections indicate that the
projected number of Americans with Alzheimer’s in 2050 age 65 and
older will range from 11 to 16 million.168
A14. Annual mortality rate due to Alzheimer’s disease by state:
Unadjusted death rates are presented rather than age-adjusted death
rates in order to provide a clearer depiction of the true burden of
mortality for each state. States such as Florida with larger populations of
older people will have a larger burden of mortality due to Alzheimer’s.
A15. Number of family and other unpaid caregivers of people with
Alzheimer’s and other dementias: To calculate this number, the
Alzheimer’s Association started with data from the Behavioral Risk
Factor Surveillance System (BRFSS). In 2009, the BRFSS survey asked
respondents age 18 and over whether they had provided any regular
care or assistance during the past month to a family member or friend
who had a health problem, long-term illness or disability. To determine
the number of family and other unpaid caregivers nationally and by state,
we applied the proportion of caregivers nationally and for each state
from the 2009 BRFSS (as provided by the Centers for Disease Control
and Prevention, Healthy Aging Program, unpublished data) to the
number of people age 18 and older nationally and in each state from the
U.S. Census Bureau report for July 2014. Available at: www.census.
gov/popest/data/datasets.html. Accessed on Jan. 3, 2015. To calculate
the proportion of family and other unpaid caregivers who provide care
for a person with Alzheimer’s or another dementia, the Alzheimer’s
Association used data from the results of a national telephone survey
conducted in 2009 for the National Alliance for Caregiving (NAC)/
AARP.428 The NAC/AARP survey asked respondents age 18 and over
whether they were providing unpaid care for a relative or friend age
18 or older or had provided such care during the past 12 months.
Respondents who answered affirmatively were then asked about the
health problems of the person for whom they provided care. In
response, 26 percent of caregivers said that: (1) Alzheimer’s or another
dementia was the main problem of the person for whom they provided
care, or (2) the person had Alzheimer’s or other mental confusion in
addition to his or her main problem. The 26 percent figure was applied
to the total number of caregivers nationally and in each state, resulting in
a total of 15,705,824 Alzheimer’s and dementia caregivers.
A16. The 2014 Alzheimer’s Association Women and Alzheimer’s Poll
questioned a nationally-representative sample of 3,102 American adults
about their attitudes, knowledge and experiences related to Alzheimer’s
disease and dementia from January 9, 2014 to January 29, 2014. An
additional 512 respondents who provided unpaid help to a relative or
friend with Alzheimer’s disease or a related dementia were asked
questions about their care provision. Random selections of telephone
numbers from landline and cell phone exchanges throughout the United
States were conducted. One individual per household was selected
from the landline sample, and cell phone respondents were selected if
they were 18 years old or older. Interviews were administered in
English and Spanish. The poll “oversampled” Hispanics, selected from
U.S. Census tracts with higher than an 8 percent concentration of this
group. A list sample of Asian Americans was also utilized to oversample
this group. A general population weight was used to adjust for number
of adults in the household and telephone usage; the second stage of
this weight balanced the sample to estimated U.S. population
characteristics. A weight for the caregiver sample accounted for the
increased likelihood of female and white respondents in the caregiver
sample. Sampling weights were also created to account for the use of
two supplemental list samples. The resulting interviews comprise a
probability-based, nationally representative sample of U.S. adults.
A caregiver was defined as an adult over age 18 who, in the past
12 months, provided unpaid care to a relative or friend age 50 or older
with Alzheimer’s or another dementia. Questionnaire design and
interviewing were conducted by Abt SRBI of New York.
A17. Number of hours of unpaid care: To calculate this number, the
Alzheimer’s Association used data from a follow-up analysis of results
from the 2009 NAC/AARP national telephone survey (data provided
under contract by Matthew Greenwald and Associates, Nov. 11, 2009).
These data show that caregivers of people with Alzheimer’s and other
dementias provided an average of 21.9 hours a week of care, or
1,139 hours per year. The number of family and other unpaid caregivers
(15,705,824)A15 was multiplied by the average hours of care per year,
which totals 17.886 billion hours of care.
A18. Value of unpaid caregiving: To calculate this number, the
Alzheimer’s Association used the method of Amo et al.429 This method
uses the average of the federal minimum hourly wage ($7.25 in 2014)
and the mean hourly wage of home health aides ($17.09 in July 2014).430
The average is $12.17, which was multiplied by the number of hours of
unpaid care (17.886 billion) to derive the total value of unpaid care
($217.67 billion).
A19. Higher health care costs of Alzheimer’s caregivers: This figure is
based on a methodology originally developed by Brent Fulton, Ph.D., for
The Shriver Report: A Woman’s Nation Takes on Alzheimer’s. A survey of
17,000 employees of a multinational firm based in the United States
estimated that caregivers’ health care costs were 8 percent higher than
non-caregivers’.431 To determine the dollar amount represented by that
8 percent figure nationally and in each state, the 8 percent figure and
the proportion of caregivers from the 2009 Behavioral Risk Factor
Surveillance System A15 were used to weight each state’s caregiver and
non-caregiver per capita personal health care spending in 2009,432
inflated to 2014 dollars. The dollar amount difference between the
weighted per capita personal health care spending of caregivers and
non-caregivers in each state (reflecting the 8 percent higher costs for
caregivers) produced the average additional health care costs for
caregivers in each state. Nationally, this translated into an average of
$639. The amount of the additional cost in each state, which varied by
state from a low of $471 in Utah to a high of $974 in the District of
Columbia, was multiplied by the total number of unpaid Alzheimer’s and
dementia caregivers in that stateA15 to arrive at that state’s total
additional health care costs of Alzheimer’s and other dementia
caregivers as a result of being a caregiver. The combined total for all
states was $9.733 billion. Fulton concluded that this is “likely to be a
conservative estimate because caregiving for people with Alzheimer’s is
more stressful than caregiving for most people who don’t have the
disease.”433
A20. Lewin Model on Alzheimer’s and dementia costs: These numbers
come from a model created for the Alzheimer’s Association by The
Lewin Group and updated in January 2015. The model estimates total
payments for health care, long-term care and hospice for people with
Alzheimer’s disease and other dementias based on cost data from the
2008 Medicare Current Beneficiary Survey. A comprehensive report on
the model, Changing the Trajectory of Alzheimer’s Disease: How a
Treatment by 2025 Saves Lives and Dollars, was published by the
Alzheimer’s Association in February 2015. The report and additional
information on the model, its long-term projections and its methodology
are available at alz.org/trajectory.
Appendices
69
A21. All cost estimates were inflated to year 2014 dollars using the
Consumer Price Index (CPI): All cost estimates were inflated using
the seasonally adjusted average prices for medical care services from
all urban consumers. The relevant item within medical care services
was used for each cost element. For example, the medical care item
within the CPI was used to inflate total health care payments; the
hospital services item within the CPI was used to inflate hospital
payments; and the nursing home and adult day services item within
the CPI was used to inflate nursing home payments.
A22. Medicare Current Beneficiary Survey Report: These data come
from an analysis of findings from the 2008 Medicare Current
Beneficiary Survey (MCBS). The analysis was conducted for the
Alzheimer’s Association by Julie Bynum, M.D., M.P.H., Dartmouth
Institute for Health Policy and Clinical Care, Center for Health Policy
Research.179 The MCBS, a continuous survey of a nationally
representative sample of about 16,000 Medicare beneficiaries, is
linked to Medicare Part B claims. The survey is supported by the
U.S. Centers for Medicare and Medicaid Services (CMS). For
community-dwelling survey participants, MCBS interviews are
conducted in person three times a year with the Medicare beneficiary
or a proxy respondent if the beneficiary is not able to respond. For
survey participants who are living in a nursing home or another
residential care facility, such as an assisted living residence,
retirement home or a long-term care unit in a hospital or mental
health facility, MCBS interviews are conducted with a nurse who is
familiar with the survey participant and his or her medical record.
Data from the MCBS analysis that are included in 2015 Alzheimer’s
Disease Facts and Figures pertain only to Medicare beneficiaries age
65 and older. For this MCBS analysis, people with dementia are
defined as:
those with more severe, and therefore more costly, illness. A second
reason is that Hurd et al.’s estimated costs reflect an effort to isolate
the incremental costs associated with Alzheimer’s disease and other
dementias (those costs attributed only to dementia), while the
per-person costs in 2015 Alzheimer’s Disease Facts and Figures
incorporate all costs of caring for people with the disease (regardless
of whether the expenditure was related to dementia or a coexisting
condition).
A24. The source for long-term care costs differs from the source
used in prior years of this report: Some long-term care cost figures
for 2015 are lower than the figures reported in the 2014 Alzheimer’s
Disease Facts and Figures. There are several possible explanations for
these differences, including differences in the methodologies used,
differences in the long-term care organizations included in each
survey, or changes in the underlying cost structures.
A25. Individuals with Medicare claims for more than one cancer type
were excluded from the analysis because the calculation algorithm
did not support this situation.
A26. Method of calculating the disclosure rate: The number of
respondents with a Medicare claim related to a specified medical
condition and who responded “Yes” to the question of whether a
doctor had that condition divided by the number of respondents with
a Medicare claim related to that medical condition.
A27. Disclosure rates are based on calculations incorporating data
from the 2008, 2009 and 2010 Medicare Current Beneficiary Surveys
and Medicare claims data. Calculations and related analyses were
performed under contract by Avalere Health, LLC.
• Community-dwelling survey participants who answered yes to the
MCBS question, “Has a doctor ever told you that you had
Alzheimer’s disease or dementia?” Proxy responses to this
question were accepted.
A28. Ninety-five percent confidence intervals for disclosure rates did
not overlap with the 95% confidence intervals for Alzheimer’s
disease or other dementias.
• Survey participants who were living in a nursing home or other
residential care facility and had a diagnosis of Alzheimer’s disease
or dementia in their medical record.
A29. Comparisons were considered statistically significant if the 95%
confidence intervals did not overlap.
• Survey participants who had at least one Medicare claim with a
diagnostic code for Alzheimer’s disease and other dementias in
2008. The claim could be for any Medicare service, including
hospital, skilled nursing facility, outpatient medical care, home
health care, hospice or physician, or other health care provider visit.
The diagnostic codes used to identify survey participants with
Alzheimer’s disease and other dementias are 331.0, 331.1, 331.11,
331.19, 331.2, 331.7, 331.82, 290.0, 290.1, 290.10, 290.11, 290.12,
290.13, 290.20, 290.21, 290.3, 290.40, 290.41, 290.42, 290.43,
291.2, 294.0, 294.1, 294.10 and 294.11.
Costs from the MCBS analysis are based on responses from 2008
and reported in 2014 dollars.
A23. Differences in estimated costs reported by Hurd and colleagues:
Hurd et al.196 estimated per-person costs using data from participants
in ADAMS, a cohort in which all individuals underwent diagnostic
assessments for dementia. 2015 Alzheimer’s Disease Facts and
Figures estimated per-person costs using data from the Medicare
Current Beneficiary Survey (MCBS). One reason that the per-person
costs estimated by Hurd et al. are lower than those reported in
Facts and Figures is that ADAMS, with its diagnostic evaluations of
everyone in the study, is more likely than MCBS to have identified
individuals with less severe or undiagnosed Alzheimer’s. By contrast,
the individuals with Alzheimer’s registered by MCBS are likely to be
70
Alzheimer’s Association. 2015 Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332+.
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Appendices
83
The Alzheimer’s Association acknowledges the contributions of
Joseph Gaugler, Ph.D., Bryan James, Ph.D., Tricia Johnson, Ph.D.,
Ken Scholz, Ph.D., and Jennifer Weuve, M.P.H., Sc.D., in the
preparation of 2015 Alzheimer’s Disease Facts and Figures.
85
The Alzheimer’s Association® is the world’s leading voluntary health
organization in Alzheimer’s care, support and research. Our mission is
to eliminate Alzheimer’s disease through the advancement of research;
to provide and enhance care and support for all affected; and to reduce
the risk of dementia through the promotion of brain health.
Our vision is a world without Alzheimer’s disease.®
Alzheimer’s Association
National Office
225 N. Michigan Ave., Fl. 17
Chicago, IL 60601-7633
Alzheimer’s Association
Public Policy Office
1212 New York Ave., N.W., Suite 800
Washington, DC 20005-6105
800.272.3900
alz.org
®
©2015 Alzheimer’s Association. All rights reserved.
This is an official publication of the Alzheimer’s
Association but may be distributed by unaffiliated
organizations and individuals. Such distribution does
not constitute an endorsement of these parties or
their activities by the Alzheimer’s Association.
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