2012 Alzheimer's Disease Facts and Figures

INCLUDES A SPECIAL REPORT ON
EARLY DETECTION AND DIAGNOSIS

2011 Alzheimers Disease
Facts and Figures
2012
ALZHEIMERS
DISEASE
FACTS AND
FIGURES
Includes a Special Report on
People with Alzheimers Disease and
Other Dementias Who Live Alone
ONE IN EIGHT OLDER AMERICANS HAS ALZHEIMERS DISEASE.
ALZHEIMERS DISEASE IS THE SIXTH-LEADING CAUSE OF DEATH IN
THE UNITED STATES. OVER 15 MILLION AMERICANS PROVIDE UNPAID
CARE FOR A PERSON WITH ALZHEIMERS OR OTHER DEMENTIAS.
PAYMENTS FOR CARE ARE ESTIMATED TO BE $200 BILLION IN 2012.
Alzheimers Association, 2012 Alzheimers Disease Facts and Figures, Alzheimers & Dementia, Volume 8, Issue 2
2012 Alzheimers Disease Facts and Figures
provides a statistical resource for U.S. data
related to Alzheimers disease, the most
common type of dementia, as well as other
dementias. Background and context for
interpretation of the data are contained in
the Overview. This information includes
denitions of the types of dementia and
a summary of current knowledge about
Alzheimers disease. Additional sections
address prevalence, mortality, caregiving
and use and costs of care and services.
The Special Report focuses on the
challenges of people with Alzheimers
disease and other dementias who live alone.
ABOUT THIS REPORT
1 2012 Alzheimers Disease Facts and Figures
Specic information in this years
Alzheimers Disease Facts and Figures
includes:
Overall nunber of Anericans wilh Alzheiners
disease nalionally and for each slale.
Proporlion of wonen and nen wilh Alzheiners
and olher denenlias.
Eslinales of lifeline risk for developing
Alzheiners disease.
unber of fanily caregivers, hours of care provided,
econonic value of unpaid care nalionally and
for each slale, and lhe inpacl of caregiving on
caregivers.
Use and cosls of heallh care, longlern care and
hospice care for people wilh Alzheiners disease and
olher denenlias.
unber of dealhs due lo Alzheiners disease
nalionally and for each slale, and dealh rales by age.
The Appendices delail sources and nelhods used
lo derive dala in lhis reporl.
This docunenl frequenlly ciles slalislics lhal apply
lo individuals wilh all lypes of denenlia. vhen
possible, specifc infornalion aboul Alzheiners
disease is provided, in olher cases, lhe reference
nay be a nore general one of Alzheiners disease
The conclusions in lhis reporl reHecl currenlly
available dala on Alzheiners disease. They are lhe
inlerprelalions of lhe Alzheiners Associalion.
2 Contents 2012 Alzheimers Disease Facts and Figures
Overview of Alzheimers Disease
Denenlia: Defnilion and Specifc Types 5
Alzheimers Disease 7
Synplons of Alzheiners Disease 7
Diagnosis of Alzheiners Disease 7
Causes of Alzheiners Disease 10
Fisk Faclors for Alzheiners Disease 10
Trealnenl of Alzheiners Disease 12
Prevalence
Prevalence of Alzheiners Disease and Olher Denenlias 14
ncidence and Lifeline Fisk of Alzheiners Disease 16
Eslinales of lhe unber of People wilh Alzheiners Disease, by Slale 17
Looking lo lhe Fulure 13
Mortality
Dealhs fron Alzheiners Disease 23
SlalebySlale Dealhs fron Alzheiners Disease 25
Dealh Fales by Age 25
Duralion of llness fron Diagnosis lo Dealh 25
Caregiving
Unpaid Caregivers 27
vho are lhe Caregivers? 27
Care Provided by Elhnic Connunilies 23
Caregiving Tasks 23
Duralion of Caregiving 31
Hours of Unpaid Care and Econonic Value of Caregiving 31
npacl of Caregiving 32
Paid Caregivers 34
Contents
3 2012 Alzheimers Disease Facts and Figures Contents
Use and Costs of Health Care, Long-Term Care and Hospice
Tolal Paynenls for Heallh Care, LongTern Care and Hospice 39
Use and Cosls of Heallh Care Services 40
Use and Cosls of LongTern Care Services 44
OulofPockel Cosls for Heallh Care and LongTern Care Services 43
Use and Cosls of Hospice Care 49
Projeclions for lhe Fulure 49
Special Report: People with Alzheimers Disease and Other Dementias Who Live Alone
How any People in lhe Uniled Slales wilh Alzheiners Disease and Olher Denenlias Live Alone? 51
Facial and Ceographic Disparilies 53
Typical Characlerislics of People wilh Alzheiners Disease and Olher Denenlias vho Live Alone 53
Fisks Encounlered by People wilh Alzheiners Disease and Olher Denenlias vho Live Alone 53
Caregiving for People wilh Denenlia vho Live Alone 56
Unnel eeds of People wilh Alzheiners Disease and Olher Denenlias vho Live Alone 56
Conclusion 57
Appendices
End oles 53
Feferences 61
ALZHEIMERS
DISEASE
IS THE MOST
COMMON TYPE
OF DEMENTIA.
OVERVIEW OF ALZHEIMERS DISEASE
Dementia is an umbrella term describing a
variety of diseases and conditions that develop
when nerve cells in the brain die or no longer
function normally. The death or malfunction
of these nerve cells, called neurons, causes
changes in ones memory, behavior and ability
to think clearly. In Alzheimers disease, these
brain changes eventually impair an individuals
ability to carry out such basic bodily functions
as walking and swallowing. Alzheimers
disease is ultimately fatal.
5
Dementia: Denition and Specic Types
Physicians oflen defne denenlia based on lhe crileria
given in lhe Diagnostic and Statistical Manual of Mental
Disorders, Fourth Edition (DSM-IV).
(1)
To meet DSM-IV
crileria for denenlia, lhe following are required:
Synplons nusl include decline in nenory and in at
leasl one of lhe following cognilive abililies:
1 Abilily lo generale coherenl speech or undersland
spoken or wrillen language.
2 Abilily lo recognize or idenlify objecls, assuning
inlacl sensory funclion.
3 Abilily lo execule nolor aclivilies, assuning inlacl
nolor abililies and sensory funclion and conprehension
of lhe required lask.
4 Abilily lo lhink abslraclly, nake sound judgnenls
and plan and carry oul conplex lasks.
The decline in cognilive abililies nusl be severe
enough lo inlerfere wilh daily life.
To eslablish a diagnosis of denenlia, a physician nusl
delernine lhe cause of lhe denenlialike synplons.
Sone condilions have synplons lhal ninic
denenlia bul lhal, unlike denenlia, can be reversed
wilh lrealnenl. These lrealable condilions include
depression, deliriun, side effecls fron nedicalions,
lhyroid problens, cerlain vilanin defciencies and
excessive use of alcohol. n conlrasl, denenlia is
caused by irreversible danage lo brain cells.
2012 Alzheimers Disease Facts and Figures Overview of Alzheimers Disease
lable 1: Common Types of Dementia and Their Typical Characteristics
Type of Dementia Characteristics
Alzheimers disease

Vascular dementia

osl connon lype of denenlia, accounls for an eslinaled 60 lo 30 percenl of cases.
Diffcully renenbering nanes and recenl evenls is oflen an early clinical synplon, apalhy
and depression are also oflen early synplons. Laler synplons include inpaired judgnenl,
disorienlalion, confusion, behavior changes and diffcully speaking, swallowing and walking.
ew crileria and guidelines for diagnosing Alzheiners were proposed and published in 2011.
They reconnend lhal Alzheiners disease be considered a disease lhal begins well before lhe
developnenl of synplons (see pages 3 lo 9.
Hallnark abnornalilies are deposils of lhe prolein fragnenl belaanyloid (plaques and lwisled
slrands of lhe prolein lau (langles as well as evidence of nerve cell danage and dealh in lhe brain.

Previously known as nulliinfarcl or poslslroke denenlia, vascular denenlia is less connon
as a sole cause of denenlia lhan is Alzheiners disease.
npaired judgnenl or abilily lo nake plans is nore likely lo be lhe inilial synplon, as opposed
lo lhe nenory loss oflen associaled wilh lhe inilial synplons of Alzheiners.
Occurs because of brain injuries such as nicroscopic bleeding and blood vessel blockage.
The localion of lhe brain injury delernines how lhe individuals lhinking and physical funclioning
are affecled.
n lhe pasl, evidence of vascular denenlia was used lo exclude a diagnosis of Alzheiners disease
(and vice versa. Thal praclice is no longer considered consislenl wilh palhologic evidence, which
shows lhal lhe brain changes of bolh lypes of denenlia can be presenl sinullaneously. vhen any
lwo or nore lypes of denenlia are presenl al lhe sane line, lhe individual is considered lo have
nixed denenlia.

6
lable 1 (continued): Common Types of Dementia and Their Typical Characteristics
Type of Dementia Characteristics
Overview of Alzheimers Disease 2012 Alzheimers Disease Facts and Figures
People wilh DLB have sone of lhe synplons connon in Alzheiners, bul are nore likely
lhan people wilh Alzheiners lo have inilial or early synplons such as sleep dislurbances,
wellforned visual hallucinalions, and nuscle rigidily or olher parkinsonian novenenl fealures.
Lewy bodies are abnornal aggregalions (or clunps of lhe prolein alphasynuclein. vhen
lhey develop in a parl of lhe brain called lhe corlex, denenlia can resull. Alphasynuclein also
aggregales in lhe brains of people wilh Parkinsons disease, bul lhe aggregales nay appear in
a pallern lhal is differenl fron DLB.
The brain changes of DLB alone can cause denenlia, or lhey can be presenl al lhe sane line as
lhe brain changes of Alzheiners disease and/or vascular denenlia, wilh each enlily conlribuling
lo lhe developnenl of denenlia. vhen lhis happens, lhe individual is said lo have nixed denenlia.
Characlerized by lhe hallnark abnornalilies of Alzheiners and anolher lype of denenlia -
nosl connonly, vascular denenlia, bul also olher lypes, such as denenlia wilh Lewy bodies.
Fecenl sludies suggesl lhal nixed denenlia is nore connon lhan previously lhoughl.

As Parkinsons disease progresses, il oflen resulls in a severe denenlia sinilar lo DLB
or Alzheiners.
Problens wilh novenenl are a connon synplon early in lhe disease.
Alphasynuclein aggregales are likely lo begin in an area deep in lhe brain called lhe subslanlia
nigra. The aggregales are lhoughl lo cause degeneralion of lhe nerve cells lhal produce
dopanine.
The incidence of Parkinsons disease is aboul onelenlh lhal of Alzheiners disease.

ncludes denenlias such as behavioral varianl FTLD, prinary progressive aphasia, Picks disease
and progressive supranuclear palsy.
Typical synplons include changes in personalily and behavior and diffcully wilh language.
erve cells in lhe fronl and side regions of lhe brain are especially affecled. o dislinguishing
nicroscopic abnornalily is linked lo all cases.
The brain changes of behavioral varianl FTLD nay be presenl al lhe sane line as lhe brain
changes of Alzheiners, bul people wilh behavioral varianl FTLD generally develop synplons al
a younger age (al aboul age 60 and survive for fewer years lhan lhose wilh Alzheiners.

Fapidly falal disorder lhal inpairs nenory and coordinalion and causes behavior changes.
Fesulls fron an infeclious nisfolded prolein (prion lhal causes olher proleins lhroughoul lhe
brain lo nisfold and lhus nalfunclion.
Varianl CreulzfeldlJakob disease is believed lo be caused by consunplion of producls fron
callle affecled by nad cow disease.

Synplons include diffcully walking, nenory loss and inabilily lo conlrol urinalion.
Caused by lhe buildup of Huid in lhe brain.
Can sonelines be correcled wilh surgical inslallalion of a shunl in lhe brain lo drain
excess Huid.
Dementia with
Lewy bodies (DLB)
Mixed dementia

Parkinsons disease

Frontotemporal lobar
degeneration (FTLD)

Creutzfeldt-Jakob
disease

Normal pressure
hydrocephalus
7
vhen an individual has irreversible denenlia, a
physician nusl conducl lesls lo idenlify lhe forn of
denenlia lhal is causing synplons. Differenl lypes
of denenlia are associaled wilh dislincl synplon
pallerns and brain abnornalilies, as described in
Table 1. However, increasing evidence fron longlern
observalional and aulopsy sludies indicales lhal nany
people wilh denenlia, especially elderly individuals,
have brain abnornalilies associaled wilh nore lhan
one lype of denenlia.
(2 6
Alzheimers Disease
Alzheiners disease was frsl idenlifed nore lhan
100 years ago, bul research inlo ils synplons, causes,
risk faclors and lrealnenl has gained nonenlun only
in lhe lasl 30 years. Allhough research has revealed a
greal deal aboul Alzheiners, lhe precise physiologic
changes lhal lrigger lhe developnenl of Alzheiners
disease largely renain unknown. The only exceplions
are cerlain rare, inheriled forns of lhe disease caused
by known genelic nulalions.
Symptoms of Alzheimers Disease
Alzheiners disease affecls people in differenl ways,
bul lhe nosl connon synplon pallern begins wilh
gradually worsening abilily lo renenber new
infornalion. This occurs because disruplion of brain
cell funclion usually begins in brain regions involved in
forning new nenories. As danage spreads,
individuals experience olher diffcullies. The following
are warning signs of Alzheiners:
enory loss lhal disrupls daily life.
Challenges in planning or solving problens.
Diffcully conpleling faniliar lasks al hone,
al work or al leisure.
Confusion wilh line or place.
Trouble underslanding visual inages and
spalial relalionships.
ew problens wilh words in speaking or wriling.
isplacing lhings and losing lhe abilily lo
relrace sleps.
Decreased or poor judgnenl.
vilhdrawal fron work or social aclivilies.
Changes in nood and personalily.
For nore infornalion aboul lhe warning signs of
Alzheiners, visil www.alz.org/10signs.
ndividuals progress fron nild Alzheiners disease lo
noderale and severe disease al differenl rales. As lhe
disease progresses, lhe individuals cognilive and
funclional abililies decline. n advanced Alzheiners,
people need help wilh basic aclivilies of daily living,
such as balhing, dressing, ealing and using lhe
balhroon. Those in lhe fnal slages of lhe disease lose
lheir abilily lo connunicale, fail lo recognize loved
ones and becone bedbound and relianl on around
lheclock care. vhen an individual has diffcully
noving because of Alzheiners disease, lhey are nore
vulnerable lo infeclions, including pneunonia (infeclion
of lhe lungs. Alzheiners disease is ullinalely falal,
and Alzheinersrelaled pneunonia is oflen a
conlribuling faclor.
Diagnosis of Alzheimers Disease
A diagnosis of Alzheiners disease is nosl connonly
nade by an individuals prinary care physician. The
physician oblains a nedical and fanily hislory,
including psychialric hislory and hislory of cognilive
and behavioral changes. deally, a fanily nenber or
olher individual close lo lhe palienl is available lo
provide inpul. The physician also conducls cognilive
lesls and physical and neurologic exaninalions. n
addilion, lhe palienl nay undergo nagnelic resonance
inaging (F scans lo idenlify brain changes, such as
lhe presence of a lunor or evidence of a slroke, lhal
could cause cognilive decline.
8
The new crileria and guidelines updale,
refne and broaden guidelines published
in 1934 by lhe Alzheiners Associalion
and lhe alional nslilule of eurological
Disorders and Slroke. The new crileria
and guidelines resull fron work lhal
began in 2009, when nore lhan
40 Alzheiners researchers and clinicians
fron around lhe globe began an in
deplh review of lhe 1934 crileria lo
decide how lhey nighl be inproved by
incorporaling scienlifc advances fron
lhe lasl lhree decades.
It is important to note that these are
recommended criteria and guidelines.
More research is needed, especially
biomarker research, before the new
criteria and guidelines can be used in
clinical settings, such as in a doctors
ofce.
Differences Between the
Original and New Criteria
The 1934 crileria were based chieHy on a
doclors clinical judgnenl aboul lhe
cause of a palienls synplons, laking
inlo accounl reporls fron lhe palienl,
fanily nenbers and friends, resulls of
cognilive lesling, and general
neurological assessnenl. The new
crileria and guidelines incorporale lwo
nolable changes:
(1 They idenlify lhree slages of
Alzheiners disease, wilh lhe frsl
occurring before synplons such as
nenory loss develop and before ones
abilily lo carry oul everyday aclivilies is
affecled. n conlrasl, lhe 1934 crileria
require nenory loss and a decline in
lhinking abililies severe enough lo affecl
daily life before Alzheiners disease can
be diagnosed.
(2 They incorporale bionarker lesls.
A bionarker is sonelhing in lhe body
lhal can be neasured and lhal accuralely
indicales lhe presence or absence of
disease, or lhe risk of laler developing
a disease. For exanple, blood glucose
level is a bionarker of diabeles, and
choleslerol level is a bionarker of hearl
disease risk. Levels of cerlain proleins in
Huid (for exanple, levels of belaanyloid
and lau in lhe cerebrospinal Huid and
blood are anong several faclors being
sludied as possible bionarkers for
Alzheiners.
The Three Stages of Alzheimers
Disease Proposed by the New Criteria
and Guidelines for the Diagnosis of
Alzheimers Disease
The lhree slages of Alzheiners disease
idenlifed in lhe new crileria and
guidelines are preclinical Alzheiners
disease, nild cognilive inpairnenl (C
due to Alzheimers disease and dementia
due lo Alzheiners disease. These slages
are differenl fron lhe slages now used lo
describe Alzheiners. Currenlly, lhe
slages of Alzheiners are oflen described
as nild/earlyslage, noderale/nidslage
or severe/laleslage. The new crileria
propose lhal Alzheiners disease begins
before lhe nild/earlyslage and lhal new
lechnologies have lhe polenlial lo
idenlify Alzheinersrelaled brain
changes lhal occur before nild/early
slage disease. vhen lhese very early
changes in lhe brain are idenlifed, an
individual diagnosed using lhe new
crileria would be said lo have preclinical
Alzheiners disease or C due lo
Alzheiners. The lhird slage of lhe new
criteria, dementia due to Alzheimers
disease, enconpasses all slages of
Alzheiners disease as described loday,
fron nild/earlyslage lo severe/
laleslage.
Preclinical Alzheimers disease - n lhis
slage, individuals have neasurable
changes in lhe brain, cerebrospinal Huid
and/or blood (bionarkers lhal indicale
lhe earliesl signs of disease, bul lhey
A MODERN DIAGNOSIS OF ALZHEIMERS DISEASE:
PROPOSED NEW CRITERIA AND GUIDELINES
In 2011, the National Institute on Aging (NIA) and the
Alzheimers Association recommended new diagnostic
criteria and guidelines for Alzheimers disease.
(7-10)
9

have nol yel developed synplons such
as nenory loss. This preclinical or
presynplonalic slage reHecls currenl
lhinking lhal Alzheiners begins crealing
changes in lhe brain as nany as 20 years
before synplons occur. Allhough lhe
new crileria and guidelines idenlify
preclinical disease as a slage of
Alzheiners, lhey do nol eslablish
diagnostic criteria that doctors can use
now. Falher, lhey slale lhal addilional
bionarker research is needed before lhis
slage of Alzheiners can be diagnosed.
MCI due to Alzheimers disease -
ndividuals wilh C have nild bul
neasurable changes in lhinking abililies
lhal are noliceable lo lhe person affecled
and lo fanily nenbers and friends, bul
lhal do nol affecl lhe individuals abilily
lo carry oul everyday aclivilies. Sludies
indicale lhal as nany as 10 lo 20 percenl
of people age 65 and older have C.
(1113
l is eslinaled lhal as nany as 15 percenl
of people whose C synplons cause
them enough concern to contact their
doclors offce for an exan go on lo
develop denenlia each year. Fron lhis
eslinale, nearly half of all people who
have visiled a doclor aboul C
synplons will develop denenlia in lhree
or four years.
(14
This eslinale is higher lhan for
individuals whose C is idenlifed
lhrough connunily sanpling (and nol as
a resull of a visil lo a doclor because of
cognilive concerns. For lhese
individuals, lhe rale of progression nay
reach 10 percenl per year.
(15
Further
cognilive decline is nore likely anong
individuals whose C involves nenory
problens lhan in lhose whose C does
nol involve nenory problens. Over one
year, nosl individuals wilh C who are
idenlifed lhrough connunily sanpling
renain cognilively slable. Sone, prinarily
lhose wilhoul nenory problens,
experience an inprovenenl in cognilion
or reverl lo nornal cognilive slalus.
(16
l is unclear why sone people wilh C
develop denenlia and olhers do nol.
vhen an individual wilh C goes on lo
develop denenlia, nany scienlisls
believe lhe C is aclually an early slage
of lhe parlicular forn of denenlia, ralher
lhan a separale condilion.
The new crileria and guidelines
reconnend bionarker lesling for people
wilh C lo learn whelher lhey have
brain changes lhal pul lhen al high risk
of developing Alzheiners disease or
olher denenlias. f il can be shown lhal
changes in lhe brain, cerebrospinal Huid
and/or blood are caused by physiologic
processes associaled wilh Alzheiners,
lhe new crileria and guidelines
reconnend a diagnosis of C due lo
Alzheiners disease. Before doclors can
nake such a diagnosis, however,
researchers nusl prove lhal lhe
bionarker lesls accuralely indicale risk.
Dementia due to Alzheimers
disease - This slage is characlerized by
nenory, lhinking and behavioral
synplons lhal inpair a persons abilily
lo funclion in daily life and lhal are
caused by Alzheiners diseaserelaled
processes.
Biomarker Tests
The new crileria and guidelines idenlify
lwo bionarker calegories: (1 bionarkers
showing lhe level of belaanyloid
accunulalion in lhe brain and (2
bionarkers showing lhal nerve cells in
lhe brain are injured or aclually
degeneraling.
Fesearchers believe lhal fulure
lrealnenls lo slow or slop lhe
progression of Alzheiners disease and
preserve brain funclion (called disease
nodifying lrealnenls will be nosl
effeclive when adninislered during lhe
preclinical and C slages of lhe disease.
n lhe fulure, bionarker lesls will be
essenlial lo idenlify which individuals are
in lhese early slages and should receive
diseasenodifying lrealnenl when il
becones available. They also will be
crilical for noniloring lhe effecls of
lrealnenl.
10
Causes of Alzheimers Disease
The cause or causes of Alzheiners disease are
nol yel known. However, nosl experls agree lhal
Alzheiners, like olher connon chronic diseases,
develops as a resull of nulliple faclors ralher lhan
a single cause.
These faclors include a variely of brain changes lhal
begin as nany as 20 years before synplons appear.
ncreasingly, lhe line belween lhe inilial brain changes
of Alzheiners and lhe synplons of advanced
Alzheiners is considered by scienlisls lo represenl
lhe conlinuun of Alzheiners. Al lhe slarl of lhe
conlinuun, lhe individual is able lo funclion nornally
despile lhese brain changes. Furlher along lhe
conlinuun, lhe brain can no longer conpensale for lhe
increased neuronal danage caused by brain changes,
and lhe individual shows sublle decline in cognilive
funclion. n sone cases, physicians idenlify lhis poinl
in lhe conlinuun as C. Toward lhe end of lhe
continuum, neuronal damage and death is so
signifcanl lhal lhe individual shows obvious cognilive
decline, such as nenory changes or confusion as lo
line or place. Al lhis poinl, physicians following lhe
1934 crileria for Alzheiners would diagnose lhe
individual as having Alzheiners disease. The new
crileria and guidelines propose lhal lhe enlire
conlinuun, nol jusl lhe synplonalic poinls on lhe
conlinuun, represenls Alzheiners. Fesearchers
conlinue lo explore why sone individuals who have
lhe brain changes associaled wilh lhe earlier poinls of
lhe conlinuun do nol go on lo develop lhe overl
synplons of lhe laler poinls of lhe conlinuun.
Anong lhe brain changes believed lo conlribule lo lhe
developnenl of Alzheiners are lhe accunulalion of
lhe prolein belaanyloid outside neurons in lhe brain
and lhe accunulalion of lhe prolein lau inside neurons.
A heallhy adull brain has 100 billion neurons, each wilh
long, branching exlensions. These exlensions enable
individual neurons lo forn specialized conneclions
wilh olher neurons. Al lhese conneclions, called
synapses, infornalion Hows in liny chenical pulses
released by one neuron and delecled by lhe receiving
neuron. The brain conlains 100 lrillion synapses. They
allow signals lo lravel rapidly and conslanlly lhrough
lhe brains circuils, crealing lhe cellular basis of
memories, thoughts, sensations, emotions,
novenenls and skills.
n Alzheiners disease, infornalion lransfer al
synapses begins lo fail, lhe nunber of synapses
declines and neurons evenlually die. The accunulalion
of belaanyloid oulside neurons is believed lo inlerfere
wilh lhe neuronloneuron connunicalion of synapses
and lo conlribule lo cell dealh. nside lhe neuron,
abnornally high levels of lau forn langles lhal block
lhe lransporl of nulrienls and olher essenlial
nolecules lhroughoul lhe cell. This process is also
believed lo conlribule lo cell dealh. Brains fron people
wilh advanced Alzheiners show dranalic shrinkage
fron cell loss and widespread debris fron dead and
dying neurons.
One known cause of Alzheiners is genelic nulalion.
A snall percenlage of Alzheiners disease cases,
probably less lhan 1 percenl, is caused by lhree known
genelic nulalions. These nulalions involve lhe gene
for lhe anyloid precursor prolein and lhe genes for lhe
presenilin 1 and presenilin 2 proleins. nheriling any of
lhese genelic nulalions guaranlees lhal an individual
will develop Alzheiners disease. n such individuals,
lhe disease lends lo develop before age 65,
sonelines in individuals as young as age 30.
Risk Factors for Alzheimers Disease
The grealesl risk faclor for Alzheiners disease is
advancing age, bul Alzheiners is nol a nornal parl of
aging. osl people wilh Alzheiners disease are
diagnosed al age 65 or older. These individuals are said
lo have laleonsel Alzheiners disease. However,
people younger lhan age 65 can also develop lhe
disease. vhen Alzheiners develops in a person
younger lhan age 65, il is referred lo as younger
onsel (or earlyonsel Alzheiners.
2012 Alzheimers Disease Facts and Figures Overview of Alzheimers Disease 11
Advancing age is nol lhe only risk faclor for
Alzheiners disease. The following seclions describe
olher risk faclors.
Family History
ndividuals who have a parenl, brolher or sisler wilh
Alzheiners are nore likely lo develop lhe disease lhan
lhose who do nol have a frsldegree relalive wilh
Alzheiners.
(1719
Those who have nore lhan one
frsldegree relalive wilh Alzheiners are al even
higher risk of developing lhe disease.
(20)
vhen
diseases run in fanilies, heredily (genelics, shared
environnenlal/lifeslyle faclors or bolh nay play a role.
Apolipoprotein E-4 (APOE-4)
ndividuals wilh lhe 4 forn of lhe gene apolipo
prolein E are al increased risk of developing
Alzheiners disease. APOE4 is one of lhree connon
forns (2, 3 and 4 of lhe APOE gene, which
provides lhe blueprinl for a prolein lhal carries
choleslerol in lhe bloodslrean. Everyone inherils one
forn of lhe APOE gene fron each parenl. Those who
inheril one APOE4 gene have increased risk of
developing Alzheiners disease and of developing il al
an earlier age lhan lhose who inheril lhe 2 or 3
forns of lhe APOE gene. Those who inheril lwo
APOE4 genes have an even higher risk. Unlike
inheriling a known genelic nulalion for Alzheiners,
inheriling one or lwo copies of lhis forn of lhe APOE
gene does nol guaranlee lhal an individual will develop
Alzheiners.
Mild Cognitive Impairment (MCI)
C is a condilion in which an individual has nild bul
neasurable changes in lhinking abililies lhal are
noliceable lo lhe person affecled and lo fanily
nenbers and friends, bul lhal do nol affecl lhe
individuals abilily lo carry oul everyday aclivilies.
People wilh C, especially C involving nenory
problens, are nore likely lo develop Alzheiners and
olher denenlias lhan people wilhoul C. n sone
cases, such as when C is caused by cerlain
nedicalions, C can be reversed. n olher cases,
C reverls lo nornal cognilion on ils own or renains
slable. Therefore, ils inporlanl lhal people
experiencing cognilive decline seek help as soon as
possible for accurale diagnosis and lrealnenl. The new
crileria and guidelines for diagnosis of Alzheiners
disease, published in 2011,
(710
suggest that in some
cases C is aclually an early slage of Alzheiners.
For nore infornalion, see pages 3 lo 9.
Cardiovascular Disease Risk Factors
Crowing evidence suggesls lhal lhe heallh of lhe brain
is closely linked lo lhe overall heallh of lhe hearl and
blood vessels. The brain is nourished by one of lhe
bodys richesl nelworks of blood vessels. A heallhy
hearl helps ensure lhal enough blood is punped
lhrough lhese blood vessels lo lhe brain, and heallhy
blood vessels help ensure lhal lhe brain is supplied wilh
lhe oxygen and nulrienlrich blood il needs lo
funclion nornally.
Sone dala indicale lhal cardiovascular disease risk
faclors, such as physical inaclivily, high choleslerol
(especially in nidlife, diabeles, snoking and obesily,
are associaled wilh a higher risk of developing
Alzheiners and olher denenlias.
(2131
Unlike genelic
risk faclors, nany of lhese cardiovascular disease risk
faclors are modiable - lhal is, lhey can be changed lo
decrease lhe likelihood of developing cardiovascular
disease and, possibly, lhe cognilive decline associaled
wilh Alzheiners and olher forns of denenlia.
Social Engagement and Diet
Addilional sludies suggesl lhal olher nodifable faclors,
such as renaining nenlally and socially aclive and
consuning a diel low in saluraled fals and rich in
vegelables, nay supporl brain heallh.
(3233
However,
lhere are fewer of lhese lypes of sludies lhan sludies of
cardiovascular risk faclors, and lhey oflen involve a
snaller nunber of parlicipanls lhan cardiovascular
sludies. As a resull, lheir conclusions are generally
considered less convincing lhan lhose of cardiovascular
sludies. Thus, conpared wilh olher risk faclors,
relalively lillle is known aboul how social engagenenl
or diel nay affecl Alzheiners risk.
12
Head Trauma and Traumatic Brain Injury (TBI)
Head injury, head lrauna and TB are associaled wilh
an increased risk of Alzheiners disease and olher
denenlias. oderale head injuries are associaled wilh
lwice lhe risk of developing Alzheiners conpared
wilh no head injuries, and severe head injuries are
associaled wilh 4.5 lines lhe risk.
(3435
oderale head
injury is defned as a head injury resulling in loss of
consciousness or posllraunalic annesia lasling nore
lhan 30 ninules, if eilher of lhese lasls nore lhan
24 hours, lhe injury is considered severe. These
increased risks have nol been shown for individuals
experiencing nild head injury or any nunber of
connon nishaps such as bunping ones head while
exiling a car. Croups lhal experience repealed head
injuries, such as boxers, foolball players and conbal
velerans, nay be al increased risk of denenlia,
lalelife cognilive inpairnenl and evidence of lau
langles (a hallnark of Alzheiners al aulopsy.
(3641

Sone sludies suggesl lhal APOE4 carriers who
experience noderale or severe head injury are al
higher risk of developing Alzheiners lhan APOE4
carriers who do nol have a hislory of noderale or
severe head injury.
(34, 4243
Additional research is
needed lo beller undersland lhe associalion belween
brain injury and increased risk of Alzheiners.
Treatment of Alzheimers Disease
o lrealnenl is available lo slow or slop Alzheiners
disease. The U.S. Food and Drug Adninislralion has
approved fve drugs lhal lenporarily inprove
synplons. The effecliveness of lhese drugs varies
across lhe populalion. one of lhe lrealnenls
available loday allers lhe underlying course of lhis
lerninal disease. However, researchers around lhe
world are sludying dozens of lrealnenl slralegies
lhal nay have lhe polenlial lo change lhe course of
lhe disease.
Despile lhe lack of diseasenodifying lherapies,
sludies have consislenlly shown lhal aclive nedical
nanagenenl of Alzheiners and olher denenlias can
signifcanlly inprove qualily of life lhrough all slages
of lhe disease for individuals wilh denenlia and lheir
caregivers.
(4446
Aclive nanagenenl includes
(1 appropriale use of available lrealnenl oplions,
(2 effeclive nanagenenl of coexisling condilions,
(3 coordinalion of care anong physicians, olher heallh
care professionals and lay caregivers, (4 parlicipalion
in aclivilies and adull day care prograns and (5 laking
parl in supporl groups and supporlive services such
as counseling.
PREVALENCE
One in eight older Americans
has Alzheimers disease.
MILLIONS OF
AMERICANS HAVE
ALZHEIMERS
DISEASE AND OTHER
DEMENTIAS.
14
The nunber of Anericans wilh Alzheiners disease
and olher denenlias will grow each year as lhe
proporlion of lhe U.S. populalion over age 65
conlinues lo increase. The nunber will escalale rapidly
in coning years as lhe baby boon generalion ages.
Eslinales fron selecled sludies on lhe prevalence and
characlerislics of people wilh Alzheiners and olher
denenlias vary depending on how each sludy was
conducled. Dala fron several sludies are used in lhis
seclion lo describe lhe prevalence of lhese condilions
and lhe proporlion of people wilh lhe condilions by
gender, race and elhnicily, and years of educalion.
Dala sources and sludy nelhods are described in
lhe Appendices.
Prevalence of Alzheimers Disease
and Other Dementias
An eslinaled 5.4 nillion Anericans of all ages have
Alzheiners disease in 2012. This fgure includes
5.2 nillion people age 65 and older
(47, A1
and 200,000
individuals under age 65 who have youngeronsel
Alzheiners.
(43

One in eighl people age 65 and older (13 percenl
has Alzheiners disease.
A2
early half of people age 35 and older (45 percenl
have Alzheiners disease.
A3
Of lhose wilh Alzheiners disease, an eslinaled
4 percenl are under age 65, 6 percenl are 65 lo 74,
44 percenl are 75 lo 34, and 46 percenl are 35
or older.
(47, A4
The eslinaled nunbers for people over 65 cone fron
lhe Chicago Heallh and Aging Projecl (CHAP,
a populalionbased sludy of chronic heallh diseases of
older people. n 2009, lhe alional nslilule on Aging
(A and lhe Alzheiners Associalion convened a
conference lo exanine discrepancies anong eslinales
fron CHAP and olher sludies, including lhe Aging,
Denographics, and enory Sludy (ADAS, a
nalionally represenlalive sanple of older adulls.
(49

A panel of experls concluded lhal lhe discrepancies
in lhe published eslinales arose fron differences
in how lhose sludies counled who had Alzheiners
disease. vhen lhe sane diagnoslic crileria were
applied across sludies, lhe eslinales were very
sinilar.
(50, A5
alional eslinales of lhe prevalence of all forns of
denenlia are nol available fron CHAP. Based on
eslinales fron ADAS, 13.9 percenl of people age
71 and older in lhe Uniled Slales have denenlia.
(49

This nunber would be higher using lhe broader
diagnoslic crileria of CHAP.
The eslinales fron CHAP and ADAS are based on
connonly accepled crileria for diagnosing Alzheiners
disease lhal have been used since 1934. n 2009, an
experl workgroup was convened by lhe Alzheiners
Associalion and lhe A lo reconnend updaled
diagnoslic crileria, as described in lhe Overview
(pages 3 lo 9. l is unclear exaclly how lhese new
crileria, if adopled, could change lhe eslinaled
prevalence of Alzheiners. However, if Alzheiners
disease can be delecled earlier, in lhe preclinical slage
as defned by lhe new crileria, lhe nunber of people
reporled lo have Alzheiners disease would be larger
lhan whal is presenled in lhis reporl.
Prevalence sludies such as CHAP and ADAS are
designed so lhal all individuals wilh denenlia are
delecled. Bul in lhe connunily, only aboul half
of lhose who would neel lhe diagnoslic crileria
for Alzheiners disease or olher denenlias have
been diagnosed.
(51
Because Alzheiners disease is
underdiagnosed, nore lhan half of lhe 5.4 nillion
Anericans wilh Alzheiners nay nol know lhey
have il.
Prevalence of Alzheimers Disease and
Other Dementias in Women and Men
ore wonen lhan nen have Alzheiners disease and
olher denenlias. Alnosl lwolhirds of Anericans wilh
Alzheiners are wonen.
A6
Of lhe 5.2 nillion people
over age 65 wilh Alzheiners in lhe Uniled Slales,
Prevalence 2012 Alzheimers Disease Facts and Figures
15
3.4 nillion are wonen and 1.3 nillion are nen.
A6

Based on eslinales fron ADAS, 16 percenl of
wonen age 71 and older have Alzheiners disease or
olher denenlias conpared wilh 11 percenl of nen.
(49, 52
The larger proporlion of older wonen who have
Alzheiners disease or olher denenlias is prinarily
explained by lhe facl lhal wonen live longer on
average lhan nen.
(5253
any sludies of lhe age
specifc incidence (developnenl of new cases of
Alzheimers disease
(5359
or any dementia
(5456, 60 61

have found no signifcanl difference by gender. Thus,
wonen are not nore likely lhan nen lo develop
denenlia al any given age.
Prevalence of Alzheimers Disease and Other
Dementias by Years of Education
People wilh fewer years of educalion appear lo be al
higher risk for Alzheiners and olher denenlias lhan
lhose wilh nore years of educalion. Prevalence and
incidence sludies show lhal having fewer years of
educalion is associaled wilh a grealer likelihood of
having denenlia
(49, 62
and a grealer risk of developing
denenlia.
(55, 53, 61, 63 64

Sone researchers believe lhal a higher level of
educalion provides a cognilive reserve lhal enables
individuals lo beller conpensale for changes in
lhe brain lhal could resull in Alzheiners or anolher
denenlia.
(65 66
However, olhers believe lhal lhe
increased risk of denenlia anong lhose wilh lower
educalional allainnenl nay be explained by olher
faclors connon lo people in lower socioecononic
groups, such as increased risk for disease in general
and less access lo nedical care.
(67

Prevalence of Alzheimers Disease and
Other Dementias in Older Whites,
African-Americans and Hispanics
vhile nosl people in lhe Uniled Slales living wilh
Alzheiners and olher denenlias are nonHispanic
whiles, older AfricanAnericans and Hispanics are
proporlionalely nore likely lhan older whiles lo have
Alzheiners disease and olher denenlias.
(63 69
Dala indicale lhal in lhe Uniled Slales, older African
Anericans are probably aboul lwice as likely lo have
Alzheiners and olher denenlias as older whiles,
(70)

and Hispanics are aboul one and onehalf lines as
likely lo have Alzheiners and olher denenlias as older
whiles.
(62
Figure 1 shows lhe eslinaled prevalence
for each group, by age, fron lhe vashinglon Heighls
nwood Colunbia Aging Projecl.
Despile sone evidence of racial differences in lhe
inHuence of genelic risk faclors for Alzheiners and
olher denenlias, genelic faclors do nol appear lo
accounl for lhese large prevalence differences across
racial groups.
(71)
Instead, health conditions such as
high blood pressure and diabeles lhal increase ones
risk for Alzheiners disease and olher denenlias are
nore prevalenl in AfricanAnerican and Hispanic
connunilies. Lower levels of educalion and olher
socioeconomic characteristics in these communities
nay also increase risk. Sone sludies suggesl lhal
differences based on race and elhnicily do nol persisl
in delailed analyses lhal accounl for lhese faclors.
(49, 55
There is evidence lhal nissed diagnoses are nore
connon anong older AfricanAnericans and
Hispanics lhan anong older whiles.
(7273
For exanple,
a 2006 sludy of edicare benefciaries found lhal
Alzheiners disease or olher denenlias had been
diagnosed in 9.6 percenl of while benefciaries,
12.7 percenl of AfricanAnerican benefciaries and
14 percenl of Hispanic benefciaries.
(74
Although rates
of diagnosis were higher anong AfricanAnericans
and Hispanics lhan anong whiles, lhe difference
was nol as greal as would be expecled based on lhe
eslinaled differences found in prevalence sludies,
which are designed lo delecl all people who have
denenlia. This disparily is of increasing concern
because lhe proporlion of older Anericans who are
AfricanAnerican and Hispanic is projecled lo grow
in coning years.
(75
f lhe currenl racial and elhnic
disparilies in diagnoslic rales conlinue, lhe proporlion
of individuals wilh undiagnosed denenlia will increase.
2012 Alzheimers Disease Facts and Figures Prevalence
16 Prevalence 2012 Alzheimers Disease Facts and Figures
Incidence and Lifetime Risk
of Alzheimers Disease
vhile prevalence is lhe nunber of existing cases of
a disease in a populalion al a given line, incidence
is lhe nunber of new cases of a disease in a given
line period. The eslinaled annual incidence (rale of
developing disease in a oneyear period of Alzheiners
disease appears lo increase dranalically wilh age,
fron approxinalely 53 new cases per 1,000 people
age 65 lo 74, lo 170 new cases per 1,000 people age
75 lo 34, lo 231 new cases per 1,000 people over age
35 (lhe oldeslold.
(76
Sone sludies have found lhal
incidence levels off afler age 90, bul lhese fndings are
conlroversial. A recenl analysis indicales lhal denenlia
incidence nay conlinue lo increase and lhal previous
observalions of a leveling off of incidence anong lhe
oldeslold nay be due lo sparse dala for lhis group.
(77)

Because of lhe increase in lhe nunber of people over 65
in lhe Uniled Slales, lhe annual incidence of Alzheiners
and olher denenlias is projecled lo double by 2050.
(76
Every 63 seconds, soneone in Anerica develops
Alzheiners.
A7

By nidcenlury, soneone in Anerica will develop lhe
disease every 33 seconds.
A7
Lifeline risk is lhe probabilily lhal soneone of a given age
develops a condilion during lheir renaining lifespan. Dala
fron lhe original Franinghan Sludy populalion were used
lo eslinale lifeline risks of Alzheiners disease and of
any denenlia.
(78), A8
Slarling in 1975, nearly 2,300 people
fron lhe Franinghan Sludy who were age 65 and free of
denenlia were followed for up lo 29 years. The sludy found
lhal 65yearold wonen wilhoul denenlia had a 20 percenl
chance of developing denenlia during lhe renainder of
lheir lives (eslinaled lifeline risk, conpared wilh a
17 percenl chance for nen. For Alzheiners, lhe eslinaled
lifeline risk was nearly one in fve (17.2 percenl for wonen
conpared wilh nearly one in 10 (9.1 percenl for nen.
(73, A9

Figure 2 presenls lifeline risks of Alzheiners for nen
and wonen of specifc ages. As previously noled, lhese
differences in lifeline risks belween wonen and nen are
largely due lo wonens longer life expeclancy.
fgure 1: Proportion of People Age 65 and Older with Alzheimers Disease and Other Dementias,
by Race/Ethnicity, Washington Heights-Inwood Columbia Aging Project, 2006
70
60
50
40
30
20
10
0
9.1
2.9
7.5
Percenlage vhile AfricanAnerican Hispanic
10.9
19.9
27.9
30.2
58.6
62.9
Crealed fron dala fron Curland el al.
(62
Age 65 lo 74 75 lo 34 35+
17 2012 Alzheimers Disease Facts and Figures Prevalence
The defnilion of Alzheiners disease and olher
denenlias used in lhe Franinghan Sludy required
docunenlalion of noderale lo severe disease as
well as synplons lasling a nininun of six nonlhs.
Using a defnilion lhal also includes nilder disease and
disease of less lhan six nonlhs duralion, lifeline risks
of Alzheiners disease and olher denenlias would be
nuch higher lhan lhose eslinaled by lhis sludy.
Estimates of the Number of People
with Alzheimers Disease, by State
Table 2 (pages 20 lo 21 sunnarizes lhe projecled lolal
nunber of people age 65 and older wilh Alzheiners
disease by slale for 2000, 2010 and 2025.
A10
The
percenlage changes in lhe nunber of people wilh
Alzheiners belween 2000 and 2010 and belween
2000 and 2025 are also shown. ole lhal lhe lolal
nunber of people wilh Alzheiners is larger for slales
wilh larger populalions, such as California and ew
York. Conparable projeclions for olher lypes of
denenlia are nol available.
As shown in Figure 3, belween 2000 and 2025 sone
slales and regions across lhe counlry are expecled lo
experience doubledigil percenlage increases in lhe
overall nunbers of people wilh Alzheiners due lo
increases in lhe proporlion of lhe populalion over age
65. The Soulh and vesl are expecled lo experience
50 percenl and grealer increases in nunbers of
people wilh Alzheiners belween 2000 and 2025.
Sone slales (Alaska, Colorado, daho, evada, Ulah
and vyoning are projecled lo experience a doubling
(or nore of lhe nunber of people wilh Alzheiners.
Allhough lhe projecled increases in lhe orlheasl are
nol nearly as narked as lhose in olher regions of lhe
Uniled Slales, il should be noled lhal lhis region of
lhe counlry currenlly has a large proporlion of people
wilh Alzheiners relalive lo olher regions because lhis
region already has a high proporlion of people over
age 65. The increasing nunber of people wilh
Alzheiners will have a narked inpacl on slales heallh
care syslens, nol lo nenlion fanilies and caregivers.
Crealed fron dala fron Seshadri el al.
(78)
25
20
15
10
5
0
fgure 2: Framingham Estimated Lifetime Risks for Alzheimers by Age and Sex
en vonen Percenlage
9.1%
9.1%
17.2%
17.2%
10.2%
18.5%
12.1%
20.3%
Age 65 75 35
Looking to the Future
The nunber of Anericans surviving inlo lheir 30s and
90s and beyond is expecled lo grow dranalically due
lo advances in nedicine and nedical lechnology, as
well as social and environnenlal condilions.
(80)

Addilionally, a large segnenl of lhe Anerican
populalion - lhe baby boon generalion - is reaching
lhe age of grealer risk for Alzheiners and olher
0 - 24.0' 24.1' - 31.0' 31.1' - 49.0' 49.1' - 31.0' 31.1' - 127.0'
AK
AL
AR
AZ
CA
CO
CT
DC
DE
FL
GA
HI
IA
ID
IL
IN
KS
KY
LA
MA
MD
ME
MI
MN
MO
MS
MT
NC
ND
NE
NH
NJ
NM
NV
NY
OH
OK
OR
PA
RI
SC
SD
TN
TX
UT
VA
VT
WA
WI
WV
WY
Crealed fron dala fron Heberl el al.
(79, A10
denenlias. n facl, lhe frsl baby booners reached age
65 in 2011. By 2030, lhe segnenl of lhe U.S. populalion
age 65 and older is expecled lo double, and lhe
eslinaled 71 nillion older Anericans will nake up
approxinalely 20 percenl of lhe lolal populalion.
(81)
As lhe nunber of older Anericans grows rapidly, so loo
will lhe nunbers of new and exisling cases of
Alzheiners disease, as shown in Figure 4.
A11
fgure 3: Projected Changes Between 2000 and 2025 in Alzheimers Prevalence by State
19 2012 Alzheimers Disease Facts and Figures Prevalence
n 2000, lhere were an eslinaled 411,000 new cases
of Alzheiners disease. For 2010, lhal nunber was
eslinaled lo be 454,000 (a 10 percenl increase,
by 2030, il is projecled lo be 615,000 (a 50 percenl
increase fron 2000, and by 2050, 959,000 (a 130
percenl increase fron 2000.
(76

By 2025, lhe nunber of people age 65 and older wilh
Alzheiners disease is eslinaled lo reach 6.7 nillion
- a 30 percenl increase fron lhe 5.2 nillion age 65
and older currenlly affecled.
(47

By 2050, lhe nunber of people age 65 and older
wilh Alzheiners disease nay lriple, fron 5.2 nillion
lo a projecled 11 nillion lo 16 nillion, barring lhe
developnenl of nedical breaklhroughs lo prevenl,
slow or slop lhe disease.
(47, A11

Longer life expeclancies and aging baby booners
will also increase lhe nunbers and percenlages of
Anericans who will be anong lhe oldeslold. Belween
2010 and 2050, lhe oldeslold are expecled lo increase
fron 15 percenl of all older people in lhe Uniled Slales
lo one in every four older Anericans (24 percenl.
(80)
This
will resull in an addilional 15 nillion oldeslold people -
individuals al high risk for developing Alzheiners.
(80)

By 2050, lhe nunber of Anericans age 35 years and
older will nearly quadruple lo 21 nillion.
(80)
n 2012, lhe 35yearsandolder populalion includes
aboul 2.5 nillion people wilh Alzheiners disease,
or 43 percenl of lhe Alzheiners populalion age 65
and older.
(47

vhen lhe frsl wave of baby booners reaches age
35 (in 2031, an eslinaled 3.5 nillion people age 35
and older will have Alzheiners.
(47
18
16
14
12
10
8
6
4
2
0
Year 2000 2010 2020 2030 2040 2050
unbers
(in millions)
fgure 4: Projected Numbers of People Age 65 and Over in the U.S. Population with Alzheimers
Disease Using the U.S. Census Bureau Estimates of Population Growth*
'unbers indicale niddle eslinales per decade. Colored area indicales low and high eslinales per decade.
(47, A11
4.5
5.7
13.2
5.1
7.7
11.0
Percentage
Change in Alzheimers
(Compared with 2000)
Projected Total
Numbers (in 1,000s)
with Alzheimers
lable 2: Projections by State for Total Numbers of Americans Age 65 and Older with Alzheimers
State 2000 2010 2025 2010 2025
Alabana 34.0 91.0 110.0 3 31
Alaska 3.4 5.0 7.7 47 126
Arizona 73.0 97.0 130.0 24 67
Arkansas 56.0 60.0 76.0 7 36
California 440.0 430.0 660.0 9 50
Colorado 49.0 72.0 110.0 47 124
Conneclicul 63.0 70.0 76.0 3 12
Delaware 12.0 14.0 16.0 17 33
Dislricl of Colunbia 10.0 9.1 10.0 9 0
Florida 360.0 450.0 590.0 25 64
Ceorgia 110.0 120.0 160.0 9 45
Hawaii 23.0 27.0 34.0 17 43
daho 19.0 26.0 33.0 37 100
llinois 210.0 210.0 240.0 0 14
ndiana 100.0 120.0 130.0 20 30
owa 65.0 69.0 77.0 6 13
Kansas 50.0 53.0 62.0 6 24
Kenlucky 74.0 30.0 97.0 3 31
Louisiana 73.0 33.0 100.0 14 37
aine 25.0 25.0 23.0 0 12
aryland 73.0 36.0 100.0 10 23
assachusells 120.0 120.0 140.0 0 17
ichigan 170.0 130.0 190.0 6 12
innesola 33.0 94.0 110.0 7 25
ississippi 51.0 53.0 65.0 4 27
issouri 110.0 110.0 130.0 0 13
onlana 16.0 21.0 29.0 31 31
ebraska 33.0 37.0 44.0 12 33
evada 21.0 29.0 42.0 33 100
ew Hanpshire 19.0 22.0 26.0 16 37
ew Jersey 150.0 150.0 170.0 0 13
21
(79, A10
Percentage
Change in Alzheimers
(Compared with 2000)
Projected Total
Numbers (in 1,000s)
with Alzheimers
lable 2 (continued)
State 2000 2010 2025 2010 2025
ew exico 27.0 31.0 43.0 15 59
ew York 330.0 320.0 350.0 3 6
orlh Carolina 130.0 170.0 210.0 31 62
orlh Dakola 16.0 13.0 20.0 13 25
Ohio 200.0 230.0 250.0 15 25
Oklahona 62.0 74.0 96.0 19 55
Oregon 57.0 76.0 110.0 33 93
Pennsylvania 230.0 230.0 230.0 0 0
Fhode sland 24.0 24.0 24.0 0 0
Soulh Carolina 67.0 30.0 100.0 19 49
Soulh Dakola 17.0 19.0 21.0 12 24
Tennessee 100.0 120.0 140.0 20 40
Texas 270.0 340.0 470.0 26 74
Ulah 22.0 32.0 50.0 45 127
Vernonl 10.0 11.0 13.0 10 30
Virginia 100.0 130.0 160.0 30 60
vashinglon 33.0 110.0 150.0 33 31
vesl Virginia 40.0 44.0 50.0 10 25
visconsin 100.0 110.0 130.0 10 30
vyoning 7.0 10.0 15.0 43 114
2012 Alzheimers Disease Facts and Figures Prevalence
MORTALITY
ALZHEIMERS DISEASE
IS THE SIXTH-LEADING
CAUSE OF DEATH IN THE
UNITED STATES.
Alzheimers disease is the
fth-leading cause of death
for those age 65 and older.
(82)
5 6
23 2012 Alzheimers Disease Facts and Figures Mortality
Based on 2003 fnal dala fron lhe alional Cenler
for Heallh Slalislics, Alzheiners was reporled as lhe
underlying cause of dealh for 32,435 people.
(82)
However, dealh cerlifcales for individuals wilh
Alzheiners oflen lisl acule condilions as lhe prinary
cause of dealh ralher lhan Alzheiners.
(3336
Thus,
Alzheiners disease is likely a conlribuling cause of
dealh for even nore Anericans lhan indicaled by
offcial governnenl dala.
Deaths from Alzheimers Disease
Alzheiners is beconing a nore connon cause of
dealh as lhe populalions of lhe Uniled Slales and
olher counlries age. vhile dealhs fron olher najor
causes conlinue lo experience signifcanl declines,
lhose fron Alzheiners disease have conlinued lo rise.
Belween 2000 and 2003, dealhs allribuled lo
Alzheiners disease increased 66 percenl, while lhose
allribuled lo lhe nunber one cause of dealh, hearl
disease, decreased 13 percenl (Figure 5.
(82, 87)

The increase in lhe nunber and proporlion of dealh
cerlifcales lisling Alzheiners reHecls bolh changes in
pallerns of reporling dealhs on dealh cerlifcales over
line as well as an increase in lhe aclual nunber of
dealhs allribulable lo Alzheiners.
The differenl ways in which denenlia evenlually ends
in dealh can creale anbiguily aboul lhe underlying
cause of dealh. Severe denenlia frequenlly causes
such conplicalions as innobilily, swallowing
disorders and nalnulrilion. These conplicalions can
signifcanlly increase lhe risk of developing
pneunonia, which has been found in several sludies lo
be lhe nosl connonly idenlifed cause of dealh
anong elderly people wilh Alzheiners disease and
olher denenlias.
(3339
The silualion has been described
as a blurred dislinclion belween dealh with dementia
and death from denenlia.
(90
Fegardless of lhe cause
of dealh, 61 percenl of people wilh Alzheiners al age
70 are expecled lo die before age 30 conpared wilh
30 percenl of people al age 70 wilhoul Alzheiners.
(91

Crealed fron dala fron lhe alional Cenler for Heallh Slalislics
(87)
and inio el al.
(82)
70
60
50
40
30
20
10
0
10
20
30
Cause
of Dealh
Percenlage
fgure 5: Percentage Changes in Selected Causes of Death (All Ages) Between 2000 and 2008
Alzheiners Slroke Proslale Breasl Hearl HV
disease cancer cancer disease

-3%
-20%
-8%
-13%
-29%
+ 66%
24 Mortality 2012 Alzheimers Disease Facts and Figures
Alabana 1,513 32.6
Alaska 30 11.7
Arizona 2,099 32.3
Arkansas 393 31.3
California 10,093 27.5
Colorado 1,353 27.4
Conneclicul 339 24.0
Delaware 204 23.4
Dislricl of Colunbia 132 22.3
Florida 4,743 25.9
Ceorgia 1,929 19.9
Hawaii 213 16.9
daho 393 25.3
llinois 3,192 24.7
ndiana 1,971 30.9
owa 1,332 44.4
Kansas 961 34.3
Kenlucky 1,370 32.1
Louisiana 1,361 30.9
aine 450 34.2
aryland 1,016 13.0
assachusells 1,332 23.2
ichigan 2,739 27.4
innesola 1,344 25.7
ississippi 916 31.2
issouri 2,010 34.0

Crealed fron dala fron inio el al.
(82)

State Number of Deaths Rate
lable 3: Number of Deaths and Annual Mortality Rate (per 100,000) Due to Alzheimers Disease,
by State, 2008

State Number of Deaths Rate
onlana 294 30.4
ebraska 610 34.2
evada 279 10.7
ew Hanpshire 393 29.9
ew Jersey 1,357 21.4
ew exico 366 13.4
ew York 2,303 11.3
orlh Carolina 2,624 23.5
orlh Dakola 312 43.6
Ohio 4,235 37.3
Oklahona 1,061 29.1
Oregon 1,302 34.4
Pennsylvania 3,363 31.0
Fhode sland 359 34.2
Soulh Carolina 1,492 33.3
Soulh Dakola 402 50.0
Tennessee 2,423 39.0
Texas 5,230 21.7
Ulah 409 14.9
Vernonl 213 35.1
Virginia 1,763 22.7
vashinglon 3,105 47.4
vesl Virginia 662 36.5
visconsin 1,655 29.4
vyoning 125 23.5
U.S. Total 82,435 27.1
25 2012 Alzheimers Disease Facts and Figures Mortality
'FeHecls average dealh rale for ages 45 and older.
Crealed fron dala fron inio el al.
(82)
Anolher way lo describe lhe inpacl of Alzheiners
disease on norlalily is lhrough a slalislic known as
populalion allribulable risk. l represenls lhe
proporlion of dealhs (in a specifed anounl of line in
a populalion lhal nay be prevenlable if a disease were
elininaled. The populalion allribulable risk of
Alzheiners disease on norlalily over fve years in
people age 65 and older is eslinaled lo be belween
5 percenl and 15 percenl.
(9293
This neans lhal 5 lo 15
percenl of all dealhs in older people can be allribuled
lo Alzheiners disease.
State-by-State Deaths from
Alzheimers Disease
Table 3 provides infornalion on lhe nunber of dealhs
due lo Alzheiners by slale in 2003. The infornalion
was oblained fron dealh cerlifcales and reHecls lhe
condilion idenlifed by lhe physician as lhe underlying
cause of dealh, defned by lhe vorld Heallh
Organizalion as lhe disease or injury which inilialed
lhe lrain of evenls leading direclly lo dealh.
(82)
The
lable also provides annual norlalily rales by slale lo
conpare lhe risk of dealh due lo Alzheiners disease
across slales wilh varying populalion sizes. For lhe
Uniled Slales as a whole, in 2003, lhe norlalily
rale for Alzheiners disease was 27.1 dealhs per
100,000 people.
Death Rates by Age
Allhough people younger lhan 65 can develop and die
fron Alzheiners disease, lhe highesl risk of dealh
fron Alzheiners is in people age 65 or older. As seen
in Table 4, dealh rales for Alzheiners increase
dranalically wilh age. To pul lhese agerelaled
differences inlo perspeclive, in lhe Uniled Slales in
2003, lhe lolal norlalily rales fron all causes of dealh
were 2.5 lines as high for lhose age 75 lo 34 as for
people age 65 lo 74 and 6.5 lines as high for lhose
age 35 and older as for people age 65 lo 74. For
diseases of lhe hearl, norlalily rales were 2.3 lines
and 9.3 lines as high, respeclively. For all cancers,
norlalily rales were 1.3 lines as high and 2.2 lines as
high, respeclively. n conlrasl, Alzheiners disease
dealh rales were 9.0 lines as high for people age
75 lo 34 and 42.3 lines as high for people 35 and
older conpared wilh people age 65 lo 74.
(82)
This large
agerelaled increase in dealh rales due lo Alzheiners
underscores lhe lack of a cure or effeclive lrealnenls
for lhe disease.
Duration of Illness from
Diagnosis to Death
Sludies indicale lhal people 65 and older survive an
average of four lo eighl years afler a diagnosis of
Alzheiners disease, yel sone live as long as 20 years
wilh Alzheiners.
(9397
This indicales lhe slow, insidious
nalure of lhe progression of Alzheiners. On average,
a person wilh Alzheiners will spend nore years
(40 percenl of lhe lolal nunber of years wilh
Alzheiners in lhe nosl severe slage of lhe disease
lhan in any olher slage.
(91
uch of lhis line will be
spenl in a nursing hone, as nursing hone adnission
by age 30 is expecled for 75 percenl of people wilh
Alzheiners conpared wilh only 4 percenl of lhe
general populalion.
(91
n all, an eslinaled lwolhirds
of lhose dying of denenlia do so in nursing hones,
conpared wilh 20 percenl of cancer palienls and
23 percenl of people dying fron all olher condilions.
(93

Thus, in addilion lo Alzheiners being lhe sixlhleading
cause of dealh, lhe long duralion of illness nay be an
equally lelling slalislic of lhe public heallh inpacl of
Alzheiners disease.
lable 4: U.S. Alzheimers Death Rates (per 100,000)
by Age, 2000, 2002, 2004, 2006 and 2008
Age 2000 2002 2004 2006 2008
45-54 0.2 0.1 0.2 0.2 0.2
55-64 2.0 1.9 1.9 2.1 2.2
65-74 13.7 19.7 19.7 20.2 21.5
75-34 139.6 153.1 163.7 175.6 193.3
35+ 667.7 752.3 313.3 343.3 910.1
Rate* 17.6 20.4 22.5 24.2 27.1
CAREGIVING
OVER 15 MILLION
AMERICANS PROVIDE
UNPAID CARE FOR A
PERSON WITH ALZHEIMERS
OR OTHER DEMENTIAS.
Eighty percent of care
provided at home is delivered
by family caregivers.
80%
27
Unpaid Caregivers
Over 15 nillion Anericans provide unpaid care for a
person wilh Alzheiners disease or olher denenlias.
A12

Unpaid caregivers are prinarily fanily nenbers, bul
lhey also nay be olher relalives and friends. n 2011,
lhese people provided an eslinaled 17.4 billion hours
of unpaid care, a conlribulion lo lhe nalion valued al
over $210 billion.
Eighly percenl of care provided al hone is delivered by
fanily caregivers, fewer lhan 10 percenl of older adulls
receive all of lheir care fron paid workers.
(99
Caring for
a person wilh Alzheiners or olher denenlias is oflen
very diffcull, and nany fanily and olher unpaid
caregivers experience high levels of enolional slress
and depression as a resull. Caregiving nay also have a
negalive inpacl on heallh, enploynenl, incone and
fanily fnances.
A13
However, a variely of inlervenlions
have been developed lhal nay help caregivers wilh
lhe challenges of caregiving (Table 5, page 35.
Who are the Caregivers?
nfornalion on caregivers of people wilh Alzheiners
disease and olher denenlias cones fron nalionally
represenlalive surveys lhal vary in how dala are
collecled. One source is lhe 2009 Behavioral Fisk
Faclor Surveillance Syslen (BFFSS survey.
(100)
The
BFFSS survey is an annual public heallh lelephone
survey conducled by each slale and lhe Dislricl of
Colunbia in coordinalion wilh lhe U.S. Cenlers for
Disease Conlrol and Prevenlion.
The 2009 BFFSS surveys conducled in llinois,
Louisiana, Ohio and lhe Dislricl of Colunbia included
addilional queslions lhal enable exaninalion of lhe
differences belween caregivers of soneone wilh
Alzheimers disease or other dementias and other
caregivers.
(101)
Over 6,300 caregivers in lhese slales
were surveyed. Conpared wilh caregivers of
individuals wilh olher condilions, Alzheiners and
denenlia caregivers were nore likely lo be older
(52 years versus 46 years, fenale (70.3 percenl
versus 59.2 percenl, narried (72.3 percenl
versus 63.1 percenl and while (31.0 percenl versus
63.6 percenl.
Surveys conducled for lhe Alzheiners Associalion
A13
and lhe alional Alliance on Caregiving (AC and
AAFP
(102)
found no difference in nean age, gender or
narilal slalus belween caregivers of people wilh
Alzheiners and olher denenlias and caregivers of
people wilhoul Alzheiners and olher denenlias.
This nay reHecl varialions in lhe surveys sanpling
approach (for exanple, age and race differences
belween caregivers and noncaregivers in lhe BFFSS
nay have resulled fron denographic differences
belween slales lhal did and did nol include lhe
addilional caregiver queslions, inclusion crileria (lhe
AC/AAFP survey required lhe care recipienl lo be al
leasl 50 years old, whereas lhe BFFSS had no age
requirenenl or olher faclors.
2012 Alzheimers Disease Facts and Figures Caregiving
Crealed fron dala fron lhe Alzheiners Associalion.
A13

Under 35: 10%
3544: 11%
4554: 23%
5564: 33%
6584: 21%
85 and older: 2%
U
U
U
U
U
U
fgure 6: Ages of Alzheimers and Other
Dementia Caregivers, 2010
28
The surveys also delernined olher denographic
characlerislics of unpaid caregivers of people wilh
Alzheiners disease and olher denenlias. osl
(56 percenl were 55 or older (Figure 6, page 27 and
had less lhan a college degree (67 percenl.
A13
They
lended lo be lhe prinary breadwinners of lheir
household (55 percenl, and nearly half were enployed
full or parl line (44 percenl.
A13
Half of lhese
caregivers lived in lhe sane household as lhe person
for whon lhey provided care. Thirly percenl had
children under 13 years old living wilh lhen, such
caregivers are sonelines called lhe sandwich
generalion because lhey sinullaneously provide care
for lwo generalions.
(102)
Alnosl half of caregivers lake
care of parenls.
(102, A13
Belween 6 percenl
(102)
and
17 percenl
A13
lake care of a spouse.
ine percenl of unpaid caregivers of people wilh
Alzheiners and olher denenlias live nore lhan lwo
hours fron lhe person for whon lhey provide care,
and anolher 6 percenl live one lo lwo hours away.
(102)
Depending on lhe defnilion of longdislance
caregiving, lhese nunbers indicale lhal 1.4 nillion lo
2.3 nillion caregivers of people wilh Alzheiners and
olher denenlias are longdislance caregivers.
Care Provided by Ethnic Communities
nfornalion aboul lhe elhnic dislribulion of caregivers
of people wilh Alzheiners disease and olher
denenlias varies by survey. The proporlion of
caregivers who are nonHispanic whiles ranged fron
70 percenl
A13
lo 31 percenl.
(101102
onHispanic
AfricanAnericans conprised belween 3 percenl
(102)

and 15 percenl
A13
of caregivers. Hispanics nade up
fron 1 percenl
(101)
lo 12 percenl of caregivers,
A13
and
AsianAnericans and olher elhnic groups nade up
1 lo 2 percenl of caregivers in several surveys.
A13, (102

These surveys conlained relalively snall nunbers of
nonwhile caregivers, naking il diffcull lo conpare
characlerislics of caregivers across racial or elhnic
groups. However, conpared wilh olher surveys, lhe
sanpling of ninorilies in lhe AC/AAFP survey
provided nore slable eslinales of ninorily caregivers
and allowed nore slable conparisons across differenl
racial and elhnic groups.
Anong caregivers of a person wilh Alzheiners
disease or olher denenlias, specifcally, nolable
differences fron lhe AC/AAFP survey include
lhe following:
(102)

onHispanic whiles are nore likely lhan caregivers
of olher racial/elhnic groups lo care for a parenl
(54 percenl versus 33 percenl.
onHispanic while and AsianAnerican caregivers
are nore likely lo care for a narried person
(30 percenl and 43 percenl, respeclively conpared
wilh nonHispanic AfricanAnerican caregivers
(11 percenl.
Hispanic and nonHispanic AfricanAnerican
caregivers spend nore line caregiving
(approxinalely 30 hours per week lhan
nonHispanic while caregivers (19.3 hours per week
and AsianAnerican caregivers (15.3 hours per week.
Hispanic and nonHispanic AfricanAnerican
caregivers are nore likely lo experience high burden
fron caregiving (45 percenl and 57 percenl,
respeclively, whereas only onelhird of non
Hispanic whiles and AsianAnericans reporl
high burden.
Caregiving Tasks
The lype of help provided by fanily and olher unpaid
caregivers depends on lhe needs of lhe person wilh
Alzheiners or olher denenlias and lhe slage of
disease. Caregiving lasks can include:
nslrunenlal aclivilies of daily living (ADLs:
Shopping for groceries, preparing neals and
providing lransporlalion.
Caregiving 2012 Alzheimers Disease Facts and Figures
29
Helping lhe person lake nedicalions correclly and
follow lrealnenl reconnendalions for denenlia
and olher nedical condilions.
anaging fnances and legal affairs.
Personal aclivilies of daily living (ADLs:
Balhing, dressing, grooning, feeding and helping
lhe person use lhe loilel or nanage inconlinence.
anaging safely issues and behavioral synplons of
the disease:
Assisling wilh nobilily needs and lransferring fron
bed lo chair.
Supervising lhe person lo avoid unsafe aclivilies
such as wandering and gelling losl.
Finding and using supporlive services:
aking arrangenenls for nedical care and paid
inhone, assisled living or nursing hone care.
Hiring and supervising olhers who provide care.
Perforning household chores.
Ceneral addilional responsibililies lhal are nol
necessarily specifc lasks:
Overall nanagenenl of gelling lhrough lhe day.
Ceneral fanily issues relaled lo caring for a relalive
wilh Alzheiners disease, including connunicalion
wilh olher fanily nenbers aboul care plans, decision
naking and arrangenenls for respile for lhe
nain caregiver.
fgure 7: Proportion of Caregivers of People with Alzheimers and Other Dementias
vs. Caregivers of Other Older People Who Provide Help with Specic Activities
of Daily Living, United States, 2009
Caregivers of people wilh Alzheiners and olher denenlias Caregivers of olher older people Percenlage
Celling in and Dressing Celling lo and Balhing anaging Feeding
oul of bed fron lhe loilel inconlinence and diapers
60
50
40
30
20
10
0
Crealed fron dala fron lhe alional Alliance for Caregiving and AAFP.
(102)
54%
42%
40%
31%
32%
26%
31%
23%
31%
16%
31%
14%
Aclivily
30
Fanily and olher unpaid caregivers of people wilh
Alzheiners and olher denenlias are nore likely lhan
caregivers of olher older people lo assisl wilh any given
ADL. Over half of lhe caregivers of people
wilh Alzheiners and olher denenlias reporl
providing help wilh gelling in and oul of bed. Aboul
onelhird also provide help wilh gelling lo and fron lhe
loilel, balhing, nanaging inconlinence and
feeding (Figure 7, page 29. Fewer caregivers of olher
older people reporl providing help wilh each of lhese
lypes of care.
(102)
n addilion lo assisling wilh ADLs, alnosl lwolhirds of
caregivers of people wilh Alzheiners and olher denenlias
advocale for lheir care recipienl wilh governnenl agencies
and service providers (64 percenl, and nearly half arrange
and supervise paid caregivers fron oulside connunily
agencies (46 percenl. By conlrasl, caregivers of olher
older adulls are less likely lo advocale for lheir fanily
nenber (50 percenl and supervise connunilybased
care (33 percenl.
(102)
Caregivers of people wilh Alzheiners and olher denenlias Caregivers of olher older people
50
45
40
35
30
25
20
15
10
5
0
Percenlage
32%
28%
43%
33%
23%
34%
4%
2%
fgure 8: Proportion of Alzheimers and Dementia Caregivers vs. Caregivers of Other
Older People by Duration of Caregiving, United States, 2009
Crealed fron dala fron lhe alional Alliance for Caregiving and AAFP.
(102)
Duration Occasionally Less lhan 1 year 14 years 5+ years
31
vhen a person wilh Alzheiners or olher denenlias
noves lo an assisled living residence or nursing hone,
lhe help provided by his or her fanily caregiver usually
changes. Yel nany caregivers conlinue lo assisl wilh
fnancial and legal affairs, nake arrangenenls for
nedical care and provide enolional supporl. Sone
also conlinue lo help wilh balhing, dressing and
olher ADLs.
(104106

Duration of Caregiving
Caregivers of people wilh Alzheiners and olher
denenlias provide care for a longer line, on average,
lhan caregivers of older adulls wilh olher condilions.
For exanple, anong caregivers of people wilh
Alzheiners disease, 23 percenl had been caregivers
for less lhan one year, 43 percenl for one lo four years,
and 32 percenl for fve years or nore. n conlrasl,
nore of lheir nonAlzheiners disease caregiver
counlerparls had been caregiving for less lhan one
year (34 percenl, and fewer of lhen had been
caregiving for one lo four years (33 percenl or longer
(23 percenl (Figure 3.
(102)

Hours of Unpaid Care and
Economic Value of Caregiving
n 2011, lhe 15.2 nillion fanily and olher unpaid
caregivers of people wilh Alzheiners disease and
olher denenlias provided an eslinaled 17.4 billion
hours of unpaid care. This nunber represenls an
average of 21.9 hours of care per caregiver per week,
or 1,139 hours of care per caregiver per year.
A14
vilh
lhis care valued al $12.12 per hour,
A15
the estimated
econonic value of lhe care provided by fanily and
olher unpaid caregivers of people wilh Alzheiners
disease and olher denenlias was $210.5 billion in
2011. Table 6 (pages 36 lo 37 shows lhe lolal hours of
unpaid care as well as lhe value of lhe care provided
by fanily and olher unpaid caregivers for lhe Uniled
Slales and each slale.
Unpaid caregivers of people wilh Alzheiners disease
and olher denenlias provided care valued al nore lhan
$1 billion in each of 39 slales. Unpaid caregivers in each
of lhe four nosl populous slales - California, Florida,
ew York and Texas - provided care valued al nore
lhan $13 billion.
The average hours per week of unpaid care provided for
people wilh Alzheiners and olher denenlias is grealer
if lhe caregiver lives wilh lhe care recipienl, if lhe care
recipienl has coexisling nedical condilions and as his or
her disease progresses.
(102, 107109
fgure 9: Proportion of Alzheimers and
Dementia Caregivers Who Report
High or Very High Emotional and
Physical Stress Due to Caregiving
High lo very high ol high lo sonewhal high Percenlage

80
60
40
20
0
61%
39%
43%
57%
A13
Enolional slress of
caregiving
Physical slress of
caregiving
Slress
32
Impact of Caregiving
Caring for a person wilh Alzheiners or olher denenlias
poses special challenges. Allhough nenory loss is lhe
beslknown synplon, lhese diseases also cause loss
of judgnenl, orienlalion and lhe abilily lo undersland
and connunicale effeclively. Personalily and behavior
are affecled as well. ndividuals require increasing levels
of supervision and personal care, and nany caregivers
experience high levels of slress and negalive effecls on
lheir heallh, enploynenl, incone and fnancial securily.
The close relalionship belween lhe caregiver and lhe
inpaired person - a relalionship involving shared
enolions, experiences and nenories - nay
parlicularly place caregivers al risk for psychological
and physical illness.
(110)
Caregiver Emotional Well-Being
Allhough caregivers reporl posilive feelings aboul
caregiving, including fanily logelherness and lhe
salisfaclion of helping olhers,
A13
lhey also reporl high
levels of slress over lhe course of providing care, such as:
Sixlyone percenl of fanily caregivers of people
wilh Alzheiners and olher denenlias raled lhe
enolional slress of caregiving as high or very high
(Figure 9, page 31.
A13
n addilion, aboul 33 percenl of
fanily caregivers of people wilh Alzheiners and olher
denenlias reporl synplons of depression.
(111112
Fanily caregivers of people wilh Alzheiners and olher
denenlias reporled a good anounl lo a greal deal
of caregiving slrain concerning fnancial issues
(56 percenl and fanily relalionships (53 percenl.
A13
The BFFSS caregiver survey adninislered in lhree
slales and lhe Dislricl of Colunbia found lhal 36.5
percenl of Alzheiners and denenlia caregivers raled
slress as lhe grealesl diffcully lhey faced, conpared
wilh 23.6 percenl of nonAlzheiners and denenlia
caregivers.
(101)
Had to go in
lale/leave early/
lake line off
Effecl

100
80
60
40
20
0
Percenlage
A13
65%
fgure 10: Effect of Caregiving on Work: Caregiver Work-Related Changes
20%
13%
11% 11%
10%
8% 9% 9%
Had lo lake a
leave of absence
Had lo go fron
working full lo
parl line
Had lo lake a less
denanding job
Had to turn
down a
pronolion
Losl job
benefls
Had lo give up
working enlirely
Chose early
retirement
Saw work
perfornance suffer
lo poinl of possible
dismissal
33
The AC/AAFP survey found lhal 40 percenl of
caregivers reporled high enolional slress. This
survey found lhal caregivers who reporled high
enolional slress lended lo be lhose who were
wonen, lhe prinary caregiver, living wilh lhe care
recipienl and feeling lhal lhey had no choice in laking
on lhe role of caregiver.
(102)
Caregivers who reporl being slressed because of
lhe inpaired persons behavioral synplons are
nore likely lo place lheir care recipienl in a nursing
hone.
(111112
However, even afler caregivers place
lheir fanily nenber in a nursing hone, nany
slill reporl high levels of enolional and physical
slress.
(102, 104, 106
Sevenlyseven percenl of fanily
olher denenlias said lhal lhey sonewhal agree lo
slrongly agree lhal lhere is no righl or wrong when
fanilies decide lo place lheir fanily nenber in a
nursing hone.
A13
Care nay inlensify as people wilh denenlia near lhe
end of life. n lhe year before lhe persons dealh,
59 percenl of caregivers fell lhey were on duly
24 hours a day, and nany fell lhal caregiving during
lhis line was exlrenely slressful. A lolal of 72
percenl of fanily caregivers said lhey experienced
relief when lhe person died.
(109, 113114

Caregiver Physical Health
Caregivers nay becone polenlial secondary
palienls because of lhe negalive inpacl lhal
providing care nay have on lheir general heallh and
risk for chronic disease, heallhrelaled physiological
changes, heallh care ulilizalion and even dealh.
(115
Forlylhree percenl of caregivers of people wilh
Alzheiners disease or olher denenlias reporled lhal
lhe physical slress of caregiving was high lo very high
(Figure 9.
A13
The physical and enolional inpacl of
denenlia caregiving is eslinaled lo resull in $3.7
billion in increased heallh care cosls in lhe Uniled
Slales.
A16
Table 6 (pages 36 lo 37 shows lhe
eslinaled higher heallh care cosls for Alzheiners
and denenlia caregivers in each slale.
General Health and Risk for Chronic Disease
denenlias said lhey were sonewhal lo very
concerned aboul nainlaining lheir own heallh since
beconing a caregiver (75 percenl.
A13
Dementia
caregivers were nore likely lhan noncaregivers lo reporl
lhal lheir heallh was fair or poor,
(115
and lhey were nore
likely lhan caregivers of olher older people lo say lhal
caregiving nade lheir heallh worse.
(102103

Dala fron lhe BFFSS caregiver survey found lhal
Alzheiners and denenlia caregivers were nore lhan
lwice as likely as nonAlzheiners caregivers lo say lhe
greatest diffcully of caregiving is lhal il creales or
exacerbales lheir own heallh problens.
(101)
denenlias nay also have diffcully nainlaining heallhy
behaviors, as only 3 percenl reporled using exercise
as a way of gelling relief fron lheir caregiving
responsibililies.
(116
However, olher sludies suggesl
lhal caregiving lasks keep older caregivers nore
physically aclive lhan noncaregivers.
(117)

Fesearch suggesls lhal lhe chronic slress of caregiving
nay lead lo condilions such as nelabolic syndrone (a
conbinalion of abdoninal obesily, high blood pressure,
high blood glucose and high choleslerol lhal is oflen
associaled wilh developing diabeles and hearl disease.
elabolic syndrone, in lurn, nay have delrinenlal
effecls on heallh.
(118)
Physiological Changes
Caregivers of a spouse wilh Alzheiners or olher
denenlias are also nore likely lhan narried
noncaregivers lo have physiological changes lhal
nay reHecl declining physical heallh, including high
levels of slress hornones,
(119
reduced immune
funclion,
(120121
slow wound healing
(122)
and increased
incidence of hyperlension,
(123
coronary heart disease
(124

and inpaired endolhelial funclion, all of which nay be
associaled wilh increased risk of cardiovascular disease.
(125
34
Health Care Utilization
n one sludy, caregivers of people wilh denenlia were
nore likely lo have an energency deparlnenl visil or
hospilalizalion in lhe previous six nonlhs if lhey were
depressed or were laking care of individuals who
needed nore help wilh ADLs and had nore behavioral
synplons.
(126
Mortality
The heallh of a person wilh denenlia nay also affecl
lhe caregivers norlalily. n one sludy, caregivers of a
spouse who was hospilalized and had a nedical record
of denenlia were nore likely lo die in lhe following
year lhan caregivers whose spouse was hospilalized
bul did nol have denenlia, even afler accounling for
lhe age of lhe caregiver.
(127)
However, olher research
has found lhal lhis link does nol always hold belween
providing care for a person wilh denenlia and
norlalily. Sone sludies have found lhal caregivers
have lower norlalily rales lhan noncaregivers.
(123129

One sludy found lhal higher slress levels were
associaled wilh higher rales of norlalily in bolh
caregivers and noncaregivers.
(129
These fndings
suggesl lhal il is high slress, nol caregiving per se,
lhal increases lhe risk of norlalily. Such resulls
underscore lhe inporlance of docunenling which
aspecls of caregiving nay have adverse heallh effecls
on lhe caregiver, developing prograns lo help reduce
adverse heallh effecls relaled lo caregiving and
conducling addilional research lo beller undersland
lhe subllelies of lhe conneclion belween caregiving
and norlalily.
Caregiver Employment
Allhough 44 percenl of caregivers reporled being
enployed full or parl line, nany caregivers of people
wilh Alzheiners and olher denenlias reporled naking
najor changes lo lheir work schedules because of
lheir caregiving responsibililies: 65 percenl said lhey
had lo go in lale, leave early or lake line off, and
20 percenl had lo lake a leave of absence. Olher
workrelaled changes perlaining lo caregiving are
sunnarized in Figure 10 (page 32.
A13
Interventions that May Improve Caregiver Outcomes
A variely of inlervenlions have been lesled wilh fanily
olher denenlias. The lypes and focus of lhese
inlervenlions are sunnarized in Table 5.
(130
These
inlervenlions involve a variely of approaches, including
individual and/or group educalional and supporl
sessions, honebased visils and lechnologybased
inlervenlions involving lelephone calls, lhe nlernel,
video or audiolapes, conpulers and inleraclive
lelevision.
(131
Overall, fanily caregivers give lhese inlervenlions
posilive evalualions and, depending on how lhe
inlervenlions are delivered, lhey have been effeclive in
inproving oulcones such as increasing caregiver
knowledge, skill and wellbeing, decreasing caregiver
burden and depressive synplons,
(130135
and delaying
line lo nursing hone placenenl, which could reduce
overall heallh care cosls.
(136137
Paid Caregivers
Paid caregivers of people wilh Alzheiners disease or
olher denenlias include direclcare workers and
professionals. Direclcare workers, such as nurse
aides, hone heallh aides and personal and honecare
aides, conprise lhe najorily of lhe fornal heallh care
delivery syslen for older adulls. Professionals who
nay receive special lraining in caring for older adulls
include physicians, physician assislanls, nurses, social
workers, pharnacisls, case workers and olhers.
(99
Direclcare workers roles include assislance wilh
balhing, dressing, housekeeping and food preparalion.
Their jobs nay be rewarding and direclly inHuence lhe
35 2012 Alzheimers Disease Facts and Figures Caregiving
lable 5: Types and Focus of Caregiver Interventions
Type of Intervention Description
ncludes a slruclured progran lhal provides infornalion aboul lhe disease, resources
and services and aboul how lo expand skills lo effeclively respond lo synplons of
lhe disease (i.e., cognilive inpairnenl, behavioral synplons and carerelaled needs.
ncludes leclures, discussions and wrillen nalerials and is led by professionals wilh
specialized lraining.
Focuses on building supporl anong parlicipanls and crealing a selling in which lo discuss
problens, successes and feelings regarding caregiving. Croup nenbers recognize lhal
olhers have sinilar concerns. nlervenlions provide opporlunilies lo exchange ideas and
slralegies lhal are nosl effeclive. These groups nay be professionally or peerled.
nvolves a relalionship belween lhe caregiver and a lrained lherapy professional. Therapisls
nay leach such skills as selfnoniloring, challenge negalive lhoughls and assunplions, help
develop problensolving abililies, and focus on line nanagenenl, overload, nanagenenl of
enolions and reengagenenl in pleasanl aclivilies and posilive experiences.
ncludes various conbinalions of inlervenlions such as psychoeducalional, supporlive,
psycholherapy and lechnological approaches. These inlervenlions are led by skilled
professionals.
Psychoeducational
Supportive
Psychotherapy
Multicomponent
Crealed fron dala fron Sorensen el al.
(130
qualily of care provided. However, lheir work is
diffcull, and lhey lypically are poorly paid and receive
lillle or no lraining lo assune lhese responsibililies.
Turnover rales are high, and recruilnenl and relenlion
are persislenl challenges.
(99
l is projecled lhal lhe Uniled Slales will need an
addilional 3.5 nillion heallh care providers by 2030
jusl lo nainlain lhe currenl ralio of heallh care workers
lo lhe populalion.
(99
The need for heallh care
professionals lrained in gerialrics is escalaling, bul few
providers choose lhis career palh. n 2007, lhe nunber
of physicians cerlifed in gerialric nedicine lolaled
7,123, lhose cerlifed in gerialric psychialry equaled
1,596. By 2030, an eslinaled 36,000 gerialricians will
be needed. Sone have eslinaled lhal lhe increase
fron currenl levels will anounl lo less lhan 10 percenl,
while olhers believe lhere will be a nel loss of
physicians for gerialric palienls.
(99
Olher professions also have low nunbers of gerialric
specialisls: 4 percenl of social workers and less lhan
1 percenl of regislered nurses, physician assislanls
and pharnacisls idenlify lhenselves as specializing
in gerialrics.
(99
36 Caregiving 2012 Alzheimers Disease Facts and Figures
Number of Alzheimers/ Hours of Value of Higher Health Care
State Dementia Caregivers Unpaid Care Unpaid Care Costs of Caregivers
A16
Alabana 295,297 336,234,751 $4,075,771,130 $153,367,534
Alaska 32,039 36,542,535 $442,396,129 $24,403,253
Arizona 293,050 339,413,734 $4,113,755,662 $134,333,210
Arkansas 171,429 195,223,100 $2,366,103,974 $37,632,733
California 1,507,396 1,716,623,053 $20,305,471,403 $735,032,435
Colorado 227,372 253,931,710 $3,133,252,321 $113,600,337
Conneclicul 174,032 193,137,153 $2,402,023,291 $125,373,353
Delaware 50,226 57,197,314 $693,237,500 $35,363,057
Dislricl of Colunbia 25,725 29,296,062 $355,063,269 $22,247,375
Florida 993,634 1,137,301,634 $13,734,095,310 $594,293,432
Ceorgia 437,575 555,250,399 $6,729,640,392 $221,645,679
Hawaii 62,607 71,296,910 $364,113,545 $35,773,255
daho 75,196 35,633,757 $1,037,331,136 $35,394,239
llinois 531,773 662,523,319 $3,029,732,630 $327,515,576
ndiana 326,151 371,420,533 $4,501,617,522 $130,794,933
owa 134,333 152,934,036 $1,354,167,121 $77,522,771
Kansas 143,503 169,121,337 $2,049,750,604 $33,632,912
Kenlucky 264,653 301,392,092 $3,652,372,155 $144,611,313
Louisiana 224,632 255,367,406 $3,101,112,962 $127,007,591
aine 67,456 76,319,336 $931,050,350 $47,336,204
aryland 273,490 317,144,339 $3,343,739,991 $173,722,031
assachusells 320,694 365,206,732 $4,426,306,199 $247,757,332
ichigan 504,550 574,531,267 $6,963,924,952 $277,650,941
innesola 241,112 274,577,911 $3,327,334,237 $143,367,694
ississippi 202,193 230,257,949 $2,790,726,333 $109,676,152
lable 6: Number of Alzheimers and Dementia Caregivers, Hours of Unpaid Care, Economic Value
of the Care and Higher Health Care Costs of Caregivers, by State, 2011*
37 2012 Alzheimers Disease Facts and Figures Caregiving
lable 6 (continued)
Number of Alzheimers/ Hours of Value of Higher Health Care
State Dementia Caregivers Unpaid Care Unpaid Care Costs of Caregivers
A16
issouri 307,276 349,926,190 $4,241,105,423 $177,995,547
onlana 46,799 53,294,667 $645,931,370 $25,337,532
ebraska 79,302 90,373,344 $1,101,451,591 $46,393,077
evada 132,264 150,622,367 $1,325,543,033 $63,117,530
ew Hanpshire 63,975 72,354,161 $332,992,429 $41,762,194
ew Jersey 435,305 495,725,694 $6,003,195,403 $274,669,132
ew exico 104,333 119,333,774 $1,446,931,343 $57,967,569
ew York 994,540 1,132,532,630 $13,726,902,077 $639,993,763
orlh Carolina 431,075 490,903,515 $5,949,311,204 $231,544,112
orlh Dakola 27,343 31,707,465 $334,294,471 $13,017,922
Ohio 536,373 663,336,953 $3,100,243,371 $345,333,151
Oklahona 212,324 241,794,233 $2,930,546,775 $115,051,676
Oregon 165,306 133,319,903 $2,233,497,237 $91,032,239
Pennsylvania 664,334 756,600,213 $9,169,994,533 $427,033,350
Fhode sland 52,933 60,337,603 $731,291,751 $36,633,055
Soulh Carolina 233,504 322,353,913 $3,912,939,492 $143,509,055
Soulh Dakola 35,340 40,314,420 $494,670,767 $21,033,963
Tennessee 409,390 466,732,927 $5,657,409,070 $217,397,364
Texas 1,269,923 1,446,194,202 $17,527,373,731 $625,305,707
Ulah 134,461 153,123,613 $1,355,353,249 $56,200,375
Vernonl 29,534 33,633,747 $407,641,003 $13,792,395
Virginia 436,639 497,245,036 $6,026,609,335 $227,993,931
vashinglon 319,305 363,625,003 $4,407,135,094 $130,377,393
vesl Virginia 103,205 123,223,331 $1,493,466,770 $63,336,360
visconsin 133,140 214,254,330 $2,596,763,034 $113,966,316
vyoning 26,920 30,656,393 $371,561,603 $15,779,731
U.S. Totals 15,248,740 17,365,265,478 $210,467,017,597 $8,652,903,101
'Differences belween U.S. lolals and sunning lhe slale nunbers are lhe resull of rounding.
Crealed fron dala fron lhe 2009 BFFSS, U.S. Census Bureau, Cenlers for edicare and edicaid Services, alional Alliance for Caregiving, AAFP and
U.S. Deparlnenl of Labor.
A12, A14, A15, A16
USE AND COSTS OF HEALTH CARE, LONG-TERM CARE AND HOSPICE
PAYMENTS FOR
CARE FOR 2012
ARE ESTIMATED TO
BE $200 BILLION.
As the number of people with
Alzheimers disease and other
dementias grows, aggregate
payments for their care will
increase dramatically.
39
Aggregale paynenls for heallh care, longlern care
and hospice for people wilh Alzheiners disease and
olher denenlias are projecled lo increase fron
$200 billion in 2012 lo $1.1 lrillion in 2050 (in 2012
dollars.
A17
edicare and edicaid cover aboul 70
percenl of lhe cosls of care. All cosls are reporled in
2011 dollars,
A18
unless olherwise indicaled.
Total Payments for Health Care,
Long-Term Care and Hospice
Table 7 reporls lhe average per person paynenls for
heallh care and longlern care services for edicare
benefciaries wilh Alzheiners disease and olher
denenlias. n 2003, lolal per person paynenls fron
all sources for heallh care and longlern care for
edicare benefciaries wilh Alzheiners and olher
denenlias were lhree lines as greal as paynenls for
olher edicare benefciaries in lhe sane age group
($43,347 per person for lhose wilh Alzheiners and
olher denenlias conpared wilh $13,379 per person for
lhose wilhoul Alzheiners and olher denenlias.
(133, A19
Twenlynine percenl of older individuals wilh
Alzheiners disease and olher denenlias who have
edicare also have edicaid coverage, conpared wilh
11 percenl of individuals wilhoul denenlia.
(133
edicaid
pays for nursing hone and olher longlern care
services for sone people wilh very low incone and low
assels, and lhe high use of lhese services by people
wilh Alzheiners and olher denenlias lranslales inlo
high cosls for lhe edicaid progran. n 2003, average
edicaid paynenls per person for edicare
benefciaries age 65 and older wilh Alzheiners and
olher denenlias were 19 lines as greal as average
edicaid paynenls for edicare benefciaries wilhoul
Alzheiners and olher denenlias ($10,120 per person
for individuals wilh Alzheiners and olher denenlias
conpared wilh $527 for individuals wilhoul Alzheiners
and olher denenlias, Table 7.
(133
Disease and
Overall Community-Dwelling Residential Facility Other Dementias
Beneciaries with Alzheimers Disease Beneciaries
and Other Dementias by Place of Residence without Alzheimers
edicare $19,320 $17,651 $22,349 $7,521
edicaid 10,120 222 23,953 527
Unconpensaled 273 392 107 303
HO 994 1,543 227 1,450
Privale insurance 2,262 2,435 1,943 1,521
Olher payer 906 164 1,942 143
Oulofpockel 9,363 3,167 13,035 2,234
Total* $43,847 $25,804 $69,066 $13,879
lable 7: Average Annual Per-Person Payments for Health Care and Long-Term Care Services,
Medicare Beneciaries Age 65 and Older, with and without Alzheimers Disease and
Other Dementias and By Place of Residence, 2008 Medicare Current Beneciary Survey,
2011 Dollars
'Paynenls fron sources do nol equal lolal paynenls exaclly due lo lhe effecl of populalion weighling. Paynenls for all benefciaries
wilh Alzheiners disease and olher denenlias include paynenls for connunilydwelling and facililydwelling benefciaries.
Crealed fron unpublished dala fron lhe edicare Currenl Benefciary Survey for 2003.
(133
2012 Alzheimers Disease Facts and Figures Use and Costs of Health Care, Long-Term Care and Hospice
Payment Source
40
Tolal paynenls for 2012 are eslinaled al $200 billion,
including $140 billion for edicare and edicaid
conbined in 2012 dollars (Figure 11. These fgures are
derived fron a nodel developed by The Lewin Croup
using dala fron lhe edicare Currenl Benefciary
Survey and The Lewin Croups LongTern Care
Financing odel.
A17
Use and Costs of Health Care Services
People wilh Alzheiners disease and olher denenlias
have nore lhan lhree lines as nany hospilal slays as
olher older people.
(133
oreover, lhe use of heallh care
services for people wilh olher serious nedical
condilions is slrongly affecled by lhe presence
or absence of Alzheiners and olher denenlias.
n parlicular, people wilh coronary hearl disease,
diabeles, chronic kidney disease, chronic obslruclive
Use and Costs of Health Care, Long-Term Care and Hospice 2012 Alzheimers Disease Facts and Figures
Total cost: $200 Billion (B)

'Dala are in 2012 dollars.
Crealed fron dala fron lhe applicalion of The Lewin odel
A17
lo dala fron
lhe edicare Currenl Benefciary Survey for 2003.
(133
Olher paynenl
sources include privale insurance, heallh nainlenance organizalions, olher
nanaged care organizalions and unconpensaled care.
Medicare
$104.5 B, 52%
Medicaid
$35.5 B, 18%
Out-of-pocket
$33.8 B, 17%
Other
$26.2 B, 13%
fgure 11: Aggregate Costs of Care by
Payer for Americans Age 65 and
Older with Alzheimers Disease
and Other Dementias, 2012*
9%
6%
5%
'All hospilalizalions for individuals wilh a clinical diagnosis of probable or possible Alzheiners disease
were used lo calculale percenlages. The renaining 37 percenl of hospilalizalions were due lo olher reasons.
Crealed fron dala fron Fudolph el al.
(139
30
25
20
15
10
5
0
Syncope, fall, schenic hearl Caslroinleslinal Pneunonia Deliriun, nenlal
trauma disease disease status change
26%
17%
Feasons for
Hospilalizalion
Percenlage
fgure 12: Reasons for Hospitalization of People with Alzheimers Disease:
Percentage of Hospitalized People by Admitting Diagnosis*
U
U
U
U
41
pulnonary disease, slroke or cancer who also have
Alzheiners and olher denenlias have higher use and
cosls of heallh care services lhan do people wilh
lhese nedical condilions bul no coexisling Alzheiners
Use of Health Care Services
Older people wilh Alzheiners disease and olher
denenlias have nore hospilal slays, skilled nursing
facilily slays and hone heallh care visils lhan olher
older people.
Hospital. n 2003, lhere were 730 hospilal slays per
1,000 edicare benefciaries age 65 and older wilh
Alzheiners disease or olher denenlias conpared
wilh 234 hospilal slays per 1,000 edicare
benefciaries wilhoul lhese condilions.
(133
The most
connon reasons for hospilalizalion of people wilh
Alzheiners disease include syncope, fall and lrauna
(26 percenl, ischenic hearl disease (17 percenl and
gaslroinleslinal disease (9 percenl (Figure 12.
(139
Skilled nursing facility. n 2003, lhere were 349
skilled nursing facilily slays per 1,000 benefciaries
wilh Alzheiners and olher denenlias conpared wilh
39 slays per 1,000 benefciaries for people wilhoul
lhese condilions.
(133
Home health care. n 2003, 23 percenl of edicare
benefciaries age 65 and older wilh Alzheiners
disease and other dementias had at least one home
heallh visil during lhe year, conpared wilh
10 percenl of edicare benefciaries wilhoul
(140
Costs of Health Care Services
vilh lhe exceplion of prescriplion nedicalions,
average per person paynenls for all olher heallh care
services (i.e., hospilal, physician and olher nedical
provider, nursing hone, skilled nursing facilily and
hone heallh care were higher for edicare
denenlias lhan for olher edicare benefciaries in lhe
sane age group (Table 3.
(133

lable 8: Average Annual Per-Person Payments,
from All Sources, for Health Care
Services Provided to Medicare
Beneciaries Age 65 and Older with and
without Alzheimers Disease and Other
Dementias, 2008 Medicare Current
Beneciary Survey, 2011 Dollars

Beneciaries with Beneciaries without
Alzheimers Alzheimers
Disease and Disease and
Other Dementias Other Dementias
npalienl hospilal $9,732 $3,912
edical provider' 5,967 3,956
Skilled nursing facilily 3,312 444
ursing hone 17,693 736
Hospice 1,749 171
Hone heallh care 1,402 452
Prescriplion nedicalions'' 2,631 2,732
'edical provider includes physician, olher nedical provider and laboralory
services, and nedical equipnenl and supplies.
''nfornalion on paynenls for prescriplion drugs is only available for people who
were living in lhe connunily, lhal is, nol in a nursing hone or assisled
living facilily.
Crealed fron unpublished dala fron lhe edicare Currenl Benefciary Survey
for 2003.
(133
42 Use and Costs of Health Care, Long-Term Care and Hospice 2012 Alzheimers Disease Facts and Figures
lable 9: Specic Coexisting Medical Conditions
Among Medicare Beneciaries Age 65
and Older with Alzheimers Disease
and Other Dementias, 2009

Percentage of People with
Alzheimers Disease and Other
Dementias Who Also Had
Coexisting Condition Coexisting Medical Condition
Coronary hearl disease 30'
Diabeles 29'
Congeslive hearl failure 22'
Chronic kidney disease 17'
Chronic obslruclive pulnonary disease 17'
Slroke 14'
Cancer 9'

Crealed fron unpublished dala fron lhe alional 20' Sanple edicare
FeeforService Benefciaries for 2009.
(140
Crealed fron unpublished dala fron lhe alional 20' Sanple edicare FeeforService Benefciaries for 2009.
(140
fgure 13: Hospital Stays per 1,000 Beneciaries Age 65 and Older with Specied Coexisting
Medical Conditions, with and without Alzheimers Disease and Other Dementias, 2009
vilh Alzheiners disease and olher denenlias vilhoul Alzheiners disease and olher denenlias Hospilal slays
Condition
Chronic Congeslive Chronic Coronary Slroke Diabeles Cancer
kidney hearl failure obslruclive arlery disease
disease pulnonary disease
1,042
801
1,002
948
998
753
897
592
876
656
835
474
776
477
1,200
1,000
800
600
400
200
0
Impact of Coexisting Medical Conditions
on Use and Costs of Health Care Services
edicare benefciaries wilh Alzheiners disease and
olher denenlias are nore likely lhan lhose wilhoul lhe
disease lo have olher chronic condilions.
(140
Table 9
reporls lhe proporlion of people wilh Alzheiners
disease and olher denenlias who have cerlain
coexisling nedical condilions. n 2009, 30 percenl of
edicare benefciaries age 65 and older wilh
Alzheimers and other dementias also had coronary
hearl disease, 29 percenl also had diabeles, 22 percenl
also had congeslive hearl failure, 17 percenl also had
chronic kidney disease and 17 percenl also had chronic
obslruclive pulnonary disease.
(140
People wilh serious coexisling nedical condilions and
Alzheiners and olher denenlias are nore likely lo be
hospilalized lhan people wilh lhe sane coexisling
nedical condilions bul wilhoul Alzheiners and olher
denenlias (Figure 13.
(140
43
Sinilarly, average perperson paynenls for nany
heallh care services are higher for people who have
olher serious coexisling nedical condilions in addilion
lo Alzheiners and olher denenlias lhan for people
who have lhe sane nedical condilions bul no
Alzheiners or olher denenlias. Table 10 shows lhe
average perperson lolal edicare paynenls and
average perperson edicare paynenls for hospilal,
physician, skilled nursing facilily, hone heallh and
hospice care for benefciaries wilh olher serious
nedical condilions who eilher do or do nol have
(140
edicare
benefciaries wilh a serious nedical condilion and
Alzheiners and olher denenlias had higher average
perperson paynenls lhan edicare benefciaries wilh
lhe sane nedical condilion bul wilhoul denenlia,
wilh lhe exceplions of hospilal care and lolal edicare
paynenls for congeslive hearl failure.
Average per-Person Medicare Payment
Total Skilled
Medicare Hospital Physician Nursing Home Hospice
Payments Care Care Facility Care Health Care Care
Selected Medical Condition
by Alzheimers Disease/
Dementia (AD/D) Status
lable 10: Average Annual Per-Person Payments by Type of Service and Coexisting
Medical Condition for Medicare Beneciaries Age 65 and Older, with and without
Alzheimers Disease and Other Dementias, 2009, in 2011 Dollars*
Coronary heart disease
vilh AD/D $25,389 $9,133 $1,632 $4,034 $2,531 $2,134
vilhoul AD/D 15,748 6,566 1,243 1,229 1,090 313
Diabetes
vilh AD/D 24,776 3,696 1,523 3,911 2,603 1,973
vilhoul AD/D 13,695 5,359 1,075 1,117 1,033 223
Congestive heart failure
vilh AD/D 24,331 10,373 1,635 4,472 2,650 2,739
vilhoul AD/D 27,946 10,626 1,633 2,423 2,033 775
Chronic kidney disease
vilh AD/D 29,952 11,455 1,307 4,500 2,474 2,332
vilhoul AD/D 23,045 9,601 1,532 1,356 1,532 493
Chronic obstructive pulmonary disease
vilh AD/D 27,543 10,209 1,720 4,409 2,625 2,466
vilhoul AD/D 18,851 3,001 1,413 1,607 1,410 619
Stroke
vilh AD/D 25,843 9,003 1,535 4,232 2,393 2,567
vilhoul AD/D 18,554 6,979 1,343 2,170 1,760 607
Cancer
vilh AD/D 23,782 3,095 1,439 3,392 2,066 2,639
vilhoul AD/D 15,564 5,492 1,142 913 733 551

'This lable does nol include paynenls for all kinds of edicare services, and as a resull lhe average perperson
paynenls for specifc edicare services do nol sun lo lhe lolal per person edicare paynenls.
Crealed fron unpublished dala fron lhe alional 20' Sanple edicare FeeforService Benefciaries for 2009.
(140
Medical Condition
by Alzheimers
Disease/Dementia
(AD/D) Status
44
cognilive inpairnenl and received paid services used
alnosl lwice as nany hours of care nonlhly as lhose
who did nol have cognilive inpairnenl.
(142
People wilh Alzheiners and olher denenlias nake up
a large proporlion of all elderly people who receive
nonnedical hone care, adull day cenler services and
nursing hone care.
Home care. According lo slale hone care prograns
in Conneclicul, Florida and ichigan, nore lhan
onelhird (aboul 37 percenl of older people who
receive prinarily nonnedical hone care services,
such as personal care and honenaker services, have
cognilive inpairnenl consislenl wilh denenlia.
(143145
Adult day center services. Al leasl half of elderly
allendees al adull day cenlers have denenlia.
(146147

Nursing home care. Sixlyfour percenl of edicare
benefciaries age 65 and older living in a nursing
hone have Alzheiners disease and olher
denenlias.
(133
n 2009, 63 percenl of all nursing
hone residenls had sone degree of cognilive
inpairnenl, including 27 percenl who had very nild
lo nild cognilive inpairnenl and 41 percenl who had
noderale lo severe cognilive inpairnenl (Table 11.
(143

n June 2011, 47 percenl of all nursing hone
residenls had a diagnosis of denenlia in lheir nursing
hone record.
(149

Alzheimers special care unit. ursing hones had a
lolal of 30,366 beds in Alzheiners special care unils
in June 2011.
(150
These Alzheiners special care unil
beds accounled for 72 percenl of all special care unil
beds and 5 percenl of all nursing hone beds al lhal
line. The nunber of nursing hone beds in
Alzheiners special care unils increased in lhe 1930s
bul has decreased since 2004, when lhere were
93,763 beds in such unils.
(151
Use and Costs of Long-Term
Care Services
An eslinaled 60 lo 70 percenl of older adulls wilh
Alzheiners disease and olher denenlias live in lhe
connunily conpared wilh 93 percenl of older
adulls wilhoul Alzheiners disease and olher
denenlias.
(133, 141
Of lhose wilh Alzheiners disease
and olher denenlias who live in lhe connunily,
75 percenl live wilh soneone and lhe renaining
25 percenl live alone.
(133
As lheir denenlia progresses,
lhey generally receive nore and nore care fron fanily
and olher unpaid caregivers.
(78)
any people wilh
Alzheiners and olher denenlias also receive paid
services al hone, in adull day cenlers, assisled living
facililies or nursing hones, or in nore lhan one of
lhese sellings al differenl lines in lhe oflen long
course of lheir illness. Civen lhe high average cosls of
lhese services (e.g., adull day cenler services, $70 per
day
(141
, assisled living, $41,724 per year
(141
, and
nursing hone care, $79,110 lo $37,235 per year
(141
),
individuals oflen spend down lheir assels and
evenlually qualify for edicaid. edicaid is lhe only
public progran lhal covers lhe long nursing hone
slays lhal nosl people wilh denenlia require in lhe
lale slages of lheir illness.
Use of Long-Term Care Services by Setting
osl people wilh Alzheiners disease and olher
denenlias who live al hone receive unpaid help fron
fanily nenbers and friends, bul sone also receive
paid hone and connunilybased services, such as
personal care and adull day cenler care. A sludy of
older people who needed help lo perforn daily
aclivilies - such as dressing, balhing, shopping and
nanaging noney - found lhal lhose who also had
cognilive inpairnenl were nore lhan lwice as likely as
lhose who did nol have cognilive inpairnenl lo
receive paid hone care.
(142
n addilion, lhose who had
45 2012 Alzheimers Disease Facts and Figures Use and Costs of Health Care, Long-Term Care and Hospice
lable 11: Cognitive Impairment in Nursing Home Residents, by State, 2009

Alabana 52,312 29 27 44
Alaska 1,323 32 29 39
Arizona 41,703 43 24 23
Arkansas 33,723 23 29 43
California 259,773 36 26 33
Colorado 40,631 33 29 39
Conneclicul 63,252 39 25 36
Delaware 9,342 35 23 37
Dislricl of Colunbia 5,443 36 26 33
Florida 212,553 41 23 36
Ceorgia 63,136 16 23 61
Hawaii 3,574 25 22 53
daho 12,553 34 26 40
llinois 169,335 29 32 39
ndiana 34,063 37 29 34
owa 43,471 22 31 47
Kansas 35,371 24 31 45
Kenlucky 50,942 32 24 44
Louisiana 43,523 25 26 49
aine 13,302 37 25 33
aryland 65,917 40 23 37
assachusells 103,135 36 23 41
ichigan 104,790 33 26 41
innesola 70,474 30 30 40
ississippi 29,306 23 29 43
issouri 73,350 31 31 39
onlana 10,795 24 30 46
ebraska 27,007 23 30 42
evada 13,630 43 26 31
ew Hanpshire 15,331 34 24 42
ew Jersey 120,300 42 24 34
ew exico 13,423 32 23 40
Percentage of Residents at Each Stage of Cognitive Impairment**
None Very Mild/Mild Moderate/Severe State Total Nursing Home Residents*
46 Use and Costs of Health Care, Long-Term Care and Hospice 2012 Alzheimers Disease Facts and Figures
lable 11 (continued): Cognitive Impairment in Nursing Home Residents, by State, 2009

ew York 232,754 35 25 40
orlh Carolina 39,429 35 24 42
orlh Dakola 10,609 22 31 47
Ohio 190,576 30 27 42
Oklahona 37,263 29 31 40
Oregon 27,099 37 29 34
Pennsylvania 139,524 33 23 40
Fhode sland 17,333 32 23 40
Soulh Carolina 39,616 29 23 43
Soulh Dakola 11,347 20 31 49
Tennessee 71,723 26 27 43
Texas 192,450 19 30 51
Ulah 17,933 33 27 34
Vernonl 7,106 31 24 45
Virginia 73,635 34 26 39
vashinglon 57,335 33 23 39
vesl Virginia 21,315 37 21 42
visconsin 73,272 35 27 33
vyoning 4,792 19 23 54
U.S. Total 3,279,669 32 27 41
Percentage of Residents at Each Stage of Cognitive Impairment**
None Very Mild/Mild Moderate/Severe
'These fgures include all individuals who spenl any line in a nursing hone in 2009.
''Percenlages for each slale nay nol sun lo 100 because of rounding.
Crealed fron dala fron lhe U.S. Deparlnenl of Heallh and Hunan Services.
(143
State Total Nursing Home Residents*
47
higher ($222 per day, or $31,030 per year.
(141

Thirlysix percenl of nursing hones had separale
Alzheiners special care unils.
(141
Affordability of Long-Term Care Services
Few individuals wilh Alzheiners disease and olher
denenlias and lheir fanilies have suffcienl longlern
care insurance or can afford lo pay oulofpockel for
longlern care services for as long as lhe services
are needed.
ncone and assel dala are nol available for people
wilh Alzheiners or olher denenlias specifcally, bul
50 percenl of edicare benefciaries had incones
of $21,774 or less, and 25 percenl had incones of
$13,116 or less in 2010 (in 2011 dollars. Two hundred
percenl of lhe federal poverly level was $21,730 for a
household of one and $29,420 for a household of lwo
in 2011.
(152153
Fifly percenl of edicare benefciaries had relirenenl
accounls of $2,095 or less, 50 percenl had fnancial
assels of $30,237 or less, and 50 percenl had lolal
savings of $52,793 or less, equivalenl lo less lhan one
year of nursing hone care.
(152
Long-Term Care Insurance
n 2010, aboul 7.3 nillion people had longlern care
insurance policies.
(154
Privale heallh and longlern care
insurance policies funded only aboul 9 percenl of lolal
longlern care spending in 2006, represenling $19.0
billion of lhe $210.5 billion (in 2011 dollars in longlern
care spending.
(155

Medicaid Costs
edicaid covers nursing hone care and olher longlern
care services in lhe connunily for individuals who
neel progran requirenenls for level of care, incone
and assels. To receive coverage, benefciaries nusl
have low incones or be poor. osl nursing hone
residenls who qualify for edicaid nusl spend all of
lheir Social Securily incone and any olher nonlhly
incone, excepl for a very snall personal needs
allowance, lo pay for nursing hone care. edicaid only
Costs of Long-Term Care Services
Cosls are high for care provided al hone or in an adull
day cenler, assisled living facilily or nursing hone. The
following eslinales are for all users of lhese services.
The only exceplion is lhe cosl of Alzheiners special
care unils in nursing hones, which only applies lo lhe
people wilh Alzheiners disease and olher denenlias
who are in lhese unils.
Home care. n 2011, lhe average cosl for a
nonnedical hone heallh aide was $21 per hour, or
$163 for an eighlhour day.
(141
Adult day centers. n 2011, lhe average cosl of adull
day services was $70 per day.
(141
inelyfve percenl
of adull day cenlers provided care for people wilh
Alzheimers disease and other dementias, and
2 percenl of lhese cenlers charged an addilional fee
for lhese clienls.
Assisted living. n 2011, lhe average cosl for basic
services in an assisled living facilily was $3,477 per
nonlh, or $41,724 per year.
(141
Sevenlylwo percenl
of assisled living facililies provided care lo people
wilh Alzheiners disease and olher denenlias, and
52 percenl had a specifc unil for people wilh
Alzheiners and olher denenlias. n facililies lhal
charged a differenl rale for individuals wilh
Alzheiners and olher denenlias, lhe average rale
was $4,619 per nonlh, or $55,423 per year, for
lhis care.
Nursing homes. n 2011, lhe average cosl for a
privale roon in a nursing hone was $239 per day, or
$37,235 per year. The average cosl of a seniprivale
roon in a nursing hone was $214 per day, or $73,110
per year.
(141
Eighly percenl of nursing hones lhal
provide care for people wilh Alzheiners disease
charge lhe sane rale. n lhe few nursing hones lhal
charged a differenl rale, lhe average cosl for a privale
roon for an individual wilh Alzheiners disease was
$12 higher ($251 per day, or $91,615 per year and
lhe average cosl for a seniprivale roon was $3
43
Out-of-Pocket Costs for Health Care
and Long-Term Care Services
Despile olher sources of fnancial assislance,
individuals wilh Alzheiners disease and olher
denenlias and lheir fanilies slill incur high oulof
pockel cosls. These cosls are for edicare and olher
heallh insurance preniuns and for deduclibles,
copaynenls and services nol covered by edicare,
edicaid or addilional sources of supporl.
n 2003, edicare benefciaries age 65 and older wilh
Alzheiners and olher denenlias paid $9,363 oulof
pockel on average for heallh care and longlern care
services lhal were nol covered by addilional sources
(Table 7, page 39.
(133
Average perperson oulof
pockel paynenls were highesl for individuals living in
nursing hones and assisled living facililies and were
alnosl six lines as greal as lhe average perperson
paynenls for individuals wilh Alzheiners disease and
olher denenlias living in lhe connunily ($3,167 per
person.
(133
n 2012, lolal oulofpockel spending for
individuals wilh Alzheiners and olher denenlias is
eslinaled al $33.3 billion (Figure 11, page 40.
A17
Before inplenenlalion of lhe edicare Parl D
Prescriplion Drug Benefl in 2006, oulofpockel
expenses were increasing annually for edicare
benefciaries.
(157
n 2003, oulofpockel cosls for
prescriplion nedicalions accounled for aboul
onequarler of lolal oulofpockel cosls for all
edicare benefciaries age 65 and older.
(153
The
edicare Parl D Prescriplion Drug Benefl has helped
lo reduce oulofpockel cosls for prescriplion drugs for
nany edicare benefciaries, including benefciaries
wilh Alzheiners and olher denenlias.
(159
Sixly
percenl of all edicare benefciaries were enrolled in a
edicare Parl D plan in 2010, and lhe average nonlhly
preniun for edicare Parl D was $40.72 in 2011
(range: $14.30 lo $133.40.
(159
As noted earlier,
nakes up lhe difference if lhe nursing hone residenl
cannol pay lhe full cosl of care or has a fnancially
dependenl spouse.
The federal and slale governnenls share in nanaging
and funding lhe progran, and slales differ greally in
lhe services covered by lheir edicaid prograns.
edicaid plays a crilical role for people wilh denenlia
who can no longer afford lo pay for lheir longlern
care expenses on lheir own. n 2003, 53 percenl of
edicaid spending on longlern care was allocaled lo
inslilulional care, and lhe renaining 42 percenl was
allocaled lo hone and connunilybased services.
(155
Tolal edicaid spending for people wilh Alzheiners
disease and olher denenlias is projecled lo be
$35.5 billion in 2012.
A17
Aboul half of all edicaid
dementias are nursing home residents, and the rest
live in lhe connunily.
(156
Among nursing home
residenls wilh Alzheiners disease and olher
denenlias, 51 percenl rely on edicaid lo help pay for
lheir nursing hone care.
(156
n 2003, lolal perperson edicaid paynenls for
edicare benefciaries age 65 and older wilh
Alzheiners and olher denenlias were 19 lines as
greal as edicaid paynenls for olher edicare
benefciaries. uch of lhe difference in paynenls for
benefciaries wilh Alzheiners and olher denenlias is
due lo lhe cosls associaled wilh longlern care
(i.e., nursing hones and olher residenlial care facililies,
such as assisled living facililies. edicaid paid
$23,953 (in 2011 dollars per person for edicare
benefciaries wilh Alzheiners and olher denenlias
living in a longlern care facilily conpared wilh $222
for lhose wilh lhe diagnosis living in lhe connunily
and $527 for lhose wilhoul lhe diagnosis (Table 7,
page 39.
(133
49 2012 Alzheimers Disease Facts and Figures Use and Costs of Health Care, Long-Term Care and Hospice
however, lhe nosl expensive conponenl of oulof
pockel cosls for people wilh Alzheiners and olher
denenlias is nursing hone and olher residenlial care.
Oulofpockel cosls for lhese services are likely lo
conlinue increasing.
Use and Costs of Hospice Care
Hospices provide nedical care, pain nanagenenl and
enolional and spirilual supporl for people who are
dying, including people wilh Alzheiners disease and
olher denenlias. Hospices also provide enolional and
spirilual supporl and bereavenenl services for fanilies
of people who are dying. The nain purpose of hospice
care is lo allow individuals lo die wilh dignily and
wilhoul pain and olher dislressing synplons lhal
oflen acconpany lerninal illness. ndividuals can
receive hospice care in lheir hones, assisled living
residences or nursing hones. edicare is lhe prinary
source of paynenl for hospice care, bul privale
insurance, edicaid and olher sources also pay for
hospice care.
n 2009, 6 percenl of all people adnilled lo hospices
in lhe Uniled Slales had a prinary hospice diagnosis
of Alzheiners disease (61,146 people.
(160
An
addilional 11 percenl of all people adnilled lo hospices
in lhe Uniled Slales had a prinary hospice diagnosis
of nonAlzheiners denenlia (119,372 people.
(160
Hospice lenglh of slay has increased over lhe pasl
decade. The average lenglh of slay for hospice
benefciaries wilh a prinary hospice diagnosis of
Alzheiners disease increased fron 67 days in 1993
lo 106 days in 2009.
(160
The average lenglh of slay for
hospice benefciaries wilh a prinary diagnosis of
nonAlzheiners denenlia increased fron 57 days
in 1993 lo 92 days in 2009.
(160
Average perperson
hospice care paynenls across all benefciaries wilh
Alzheiners disease and olher denenlias were
10 lines as greal as average perperson paynenls for
all olher edicare benefciaries ($1,749 per person
conpared wilh $171 per person.
(133
Projections for the Future
Tolal paynenls for heallh care, longlern care and
hospice for people wilh Alzheiners disease and olher
denenlias are projecled lo increase fron $200 billion
in 2012 lo $1.1 lrillion in 2050 (in 2012 dollars.
This dranalic rise includes a sixfold increase in
governnenl spending under edicare and edicaid
and a fvefold increase in oulofpockel spending.
A17
SPECIAL REPORT
PEOPLE WITH
ALZHEIMERS DISEASE
AND OTHER DEMENTIAS
WHO LIVE ALONE.
At least 800,000 Americans
with Alzheimers disease
live alone.

51
The righl lo reside wilhin ones hone is a fundanenlal
hunan righl, recognized by lhe Universal Declaralion
of Hunan Fighls of lhe Uniled alions. Arlicle 12 of
lhal docunenl slales lhal o one shall be subjecled
lo arbilrary inlerference wilh his privacy, fanily, hone
or correspondence, nor lo allacks upon his honour and
repulalion.
(161
And Arlicle 17 slales lhal o one shall
be arbilrarily deprived of his properly.
(161
As people
grow older, reaching age 65 and beyond, lhey are
nore likely lo live alone, and lhose wilh severe
cognilive inpairnenl nay nol be able lo care for
lhenselves. Delernining lhe besl way lo provide
a safe environnenl and adequale care for soneone
wilh severe cognilive inpairnenl who chooses lo live
alone is oflen diffcull and fraughl wilh elhical, socielal
and enolional dilennas.
(111, 162
This Special Feporl
allenpls lo raise awareness of lhe issues lhal arise
when individuals wilh Alzheiners disease and
olher denenlias live alone, and lo slinulale discussion
of beller ways lo neel lhe unique needs of lhese
individuals.
How Many People in the United States
with Alzheimers Disease and Other
Dementias Live Alone?
Older Americans Living Alone
According lo 2011 dala fron lhe U.S. Census Bureau,
(163

aboul 29 percenl of Anericans age 65 or older - aboul
11.3 nillion people - live alone.
A20
The proporlion of
people who live alone increases wilh age and is higher
anong wonen lhan nen (Figure 14. Anong Anerican
wonen al leasl 35 years old, nore lhan 56 percenl
live alone.
Crealed fron dala fron lhe U.S. Census Bureau.
(163
60
50
40
30
20
10
0
Age Fange 6574 75 34 35+
en vonen Percenlage

16.2%

27.7%

19.6%

42.3%

30.2%

56.3%
fgure 14: Percentage of Men and Women Age 65 or Older in the United States Who Live Alone
2012 Alzheimers Disease Facts and Figures Special Report: People with Alzheimers Disease and Other Dementias Who Live Alone
52
Living Alone with Dementia
The percenlage of Anericans wilh Alzheiners
disease and olher denenlias who live alone is less
slraighlforward lo delernine, bul several sources of
infornalion yield consislenl eslinales. For lhe
renainder of lhis reporl, counls of people who live
alone include only lhose living in lhe connunily, lhal
is, il does nol include people who live in assisled living
facililies, nursing hones, or sinilar facililies lhal
provide residenlial supporl.
Medicare Current Beneciary Survey
The edicare Currenl Benefciary Survey (CBS is an
ongoing survey of aboul 13,000 edicare benefciaries
chosen lo be represenlalive of edicare benefciaries
nalionwide. l provides lhe largesl and nosl recenl
eslinales of how nany Anericans who have a
diagnosis of denenlia live alone. Dala are reporled for
2003, lhe nosl recenl year for which dala are
available.
(133, A21

Anong edicare benefciaries who reporled having
been diagnosed wilh Alzheiners disease or olher
denenlias in lhe CBS, 42 percenl lived in a nursing
hone or olher facilily lhal provided residenlial supporl
(e.g., assisled living facilily, 44 percenl lived in lhe
connunily wilh anolher person, and lhe renaining
15 percenl lived alone in lhe connunily. Anong lhose
who lived in lhe connunily, 25 percenl - or one oul
of four - lived alone.
(133
As reporled in lhe Prevalence seclion of lhis reporl, il
is eslinaled lhal 5.4 nillion people in lhe Uniled
Slales have Alzheiners disease (page 14. Assuning
lhal lhe living silualions of people who have
Alzheiners disease are sinilar lo lhe living silualions
of people who have all lypes of denenlia in lhe CBS
dala, il can be eslinaled lhal 300,000 (15 percenl
of 5.4 nillion people in lhe Uniled Slales have
Alzheiners disease and live alone in lhe connunily.
Aging, Demographics, and Memory Study
Anolher frequenlly ciled resource for slalislical
infornalion aboul people who have Alzheiners
disease and other dementias is the Aging,
Denographics, and enory Sludy (ADAS. The
ADAS dala ciled here included 1,770 people chosen
lo represenl lhe characlerislics of Anericans age 71 or
older living in lhe 43 conliguous slales in lhe years
2000 and 2002.
(164165
Anong parlicipanls in lhe sludy
who nel lhe diagnoslic crileria for denenlia,
32.4 percenl lived alone.
(165166
However, lhis sludy
included people who lived alone in residenlial care
facililies, so lhis value is probably higher lhan lhe
percenlage who lived alone in lhe connunily.
Other Studies
n a sludy of 1,000 people who provide unpaid care for
soneone wilh Alzheiners disease or olher denenlias
who lived in lhe connunily, 21 percenl indicaled lhal
lhe care recipienl lived alone.
(167
This percenlage
probably undereslinales lhe nunber of people wilh
denenlia who live alone because as nany as onelhird
lo onehalf of people wilh denenlia who live alone
have no idenlifable caregiver.
(163170

Anolher survey asked a nalionally represenlalive
sanple of caregivers aboul lhe living silualion of lheir
care recipienl. Of lhe 423 care recipienls older lhan
50 who had Alzheiners disease and who lived in
lhe connunily, 100 (25 percenl lived alone.
(102)
As
wilh lhe preceding sludy, lhis percenlage nay be an
undereslinale.
Several snaller sludies during lhe pasl lwo decades
have found lhal 20 lo 35 percenl of people wilh
denenlia who lived in lhe connunily (nol in a nursing
hone or assisled living facilily lived alone.
(163169, 171173
Summary
The available sources of infornalion consislenlly
indicale lhal al leasl 15 percenl of Anericans (or one
oul of seven who have Alzheiners disease and olher
denenlias live alone in lhe connunily. The sludies
ciled in addilion lo lhe CBS dala supporl lhe
conclusion lhal al leasl 300,000 people in lhe Uniled
Slales have Alzheiners disease and live alone in lhe
connunily. Adding people who have olher denenlias
would resull in an even larger nunber of individuals
wilh denenlia who live alone in lhe connunily.
2012 Alzheimers Disease Facts and Figures Special Report: People with Alzheimers Disease and Other Dementias Who Live Alone Special Report: People with Alzheimers Disease and Other Dementias Who Live Alone 2012 Alzheimers Disease Facts and Figures
53
Racial and Geographic Disparities
Sludies of lhe denographic characlerislics of people
wilh Alzheiners disease who live alone are sparse,
bul lhere is sone evidence of subslanlial elhnic,
geographic and cullural differences.
(170)
Among all
Anericans age 65 and older living in lhe connunily,
nonHispanic while wonen and AfricanAnerican
wonen are nore likely lhan wonen of olher races lo
live alone.
(173
Also, AfricanAnerican nen older lhan
65 are nore likely lhan Asian or nonHispanic while
nen in lhe sane age range lo live alone.
(173
These
disparilies nay exlend lo individuals wilh Alzheiners
disease or olher denenlias. n one sludy anong older,
connunilydwelling AfricanAnericans wilh probable
Alzheiners disease living in one region of lhe Uniled
Slales, 52 percenl lived alone.
(174
ore sludies are
needed lo eslablish lhe exislence of racial and
geographic disparilies and lo delernine lhe underlying
causes of such disparilies.
Typical Characteristics of People
with Alzheimers Disease and Other
Dementias Who Live Alone
Several sludies have collecled infornalion aboul
people who have denenlia and live alone in lhe
connunily and conpared lhen wilh people who have
denenlia and live wilh al leasl one olher person in lhe
connunily.
(163169, 171172, 175176
These sludies have
described connon characlerislics of people wilh
denenlia who live alone. On average, people wilh
denenlia who live alone in lhe connunily lend lo be
older, fenale and less cognilively inpaired lhan people
wilh denenlia who live in lhe connunily bul do nol
live alone. Those living alone are also nore likely lo live
in poverly, lo have had denenlia for a shorler period
and lo have fewer inpairnenls in perforning daily
aclivilies. ole, however, lhal nany individuals
wilh denenlia who live alone do nol share lhese
average characlerislics.
Despile fndings lhal people wilh denenlia who live
alone are less inpaired, on average, lhan lhose wilh
denenlia who live wilh olhers, nosl people wilh
denenlia who live alone slill have signifcanl
inpairnenls in lheir abilily lo perforn lasks such
as nanaging noney, shopping, lraveling in lhe
connunily, housekeeping, preparing neals and
laking nedicalions correclly.
(176177

Risks Encountered by People with
Even people wilh earlyslage Alzheiners disease
experience nenory loss lhal disrupls daily life,
challenges in planning or solving problens, diffcully
conpleling faniliar lasks, confusion wilh line or place,
and olher disruplions in lheir abilily lo funclion in lhe
hone.
(173179
As lhe disease progresses, an affecled
individual needs help wilh basic aclivilies of daily living
such as balhing, dressing, ealing and using lhe
balhroon. They are also likely lo have conplele loss
of orienlalion in line and space, and lhey lend lo
wander or becone losl.
(179
They nay be unable lo
solve problens or nake good judgnenls, and lhey
nay experience frequenl bowel and bladder
inconlinence.
(180)
Despile lhe declines in funclion associaled wilh
Alzheiners disease, nany sludies have shown lhal
nosl older people prefer lo live in lheir hones as long
as possible, even if lhey live alone.
(181)
nproved
supporl services, including inhone care,
lransporlalion and fnancial services, have helped
nany older connunilydwelling people slay in lheir
hones longer lhan would have been possible
olherwise.
(131132
everlheless, in nany connunilies
supporl services are slill inadequale for people wilh
denenlia who live alone. Cognilive inpairnenl and
denenlia do nol rule oul living alone,
(162
bul all people
wilh progressive denenlia will be unable lo safely live
alone in lhe laler slages of lhe disease. Furlhernore,
people wilh denenlia who live alone are exposed lo
risks lhal exceed lhe risks encounlered by people wilh
denenlia who live wilh olhers. As discussed in lhe
renainder of lhis seclion, lhese risks have inporlanl
inplicalions for lhe affecled person, caregivers, heallh
care providers, social service providers and
policynakers.
54
Delayed or Missed Diagnosis
As described in 2011 Alzheimers Disease Facts and
Figures,
(133
as nany as onehalf of people who salisfy
lhe crileria for Alzheiners and olher denenlias have
never received a diagnosis. Delayed or nissed
diagnosis nay be even nore connon anong people
who live alone.
n a sludy of people wilh denenlia who live in lhe
connunily, lhose living alone were less likely lo
recognize lheir own cognilive inpairnenl and
lherefore less likely lo recognize dangerous silualions
or problens perforning lasks lhal are crilical for daily
living.
(176
n lhe sane sludy, physicians and caregivers
were signifcanlly less likely lo recognize cognilive
inpairnenl in people living alone lhan people living
wilh olhers.
(176
Several previous sludies found sinilar
resulls.
(177, 134135
One sludy, however, found lhal
people diagnosed wilh denenlia while living alone
were al an earlier slage of disease lhan people
diagnosed while living wilh olhers.
(136
As discussed in 2011 Alzheimers Disease Facts and
Figures, delayed or nissed diagnosis of denenlia can
lead lo unnecessary burdens on lhe affecled person
and lheir caregivers.
(133
Delrinenlal consequences of
delayed or missed diagnosis include:
Losl opporlunilies lo nanage synplons.
Polenlial nisuse of nedicalions lhal nay worsen
cognilive funclion.
issed opporlunilies lo nanage coexisling nedical
condilions lhal nay worsen cognilive funclion.
nadequale supporl fron heallh care providers and
unpaid caregivers who can help lhe affecled person
nanage lheir own heallh care and use of
prescriplion nedicalion.
ncreased anxiely aboul lhe causes of synplons.
Losl opporlunilies for caregivers lo oblain lraining,
educalion and supporl services.
Losl opporlunilies lo oblain inhone supporl
services.
ncreased burden on caregivers owing lo lack of
access lo supporl services.
issed opporlunilies lo prevenl falls and injuries,
including polenlially falal injuries.
Polenlial fnancial nisnanagenenl and susceplibilily
lo scans and fraud.
Delays in planning for fulure funclional declines.
Delays in planning for fulure care needs as well as
legal and fnancial issues.
Losl opporlunilies lo parlicipale in clinical lrials,
which oflen provide experl nedical care al lillle or
no cosl.
Nursing Home Placement
Older people wilh denenlia have a nunber of housing
oplions, including renaining in lheir own hones, living
wilh relalives or olhers in lhe connunily, or residing in
an independenl living or relirenenl connunily, an
assisled living facilily or a nursing hone. Allhough lhe
services provided by specifc facililies differ across
slales, nursing hones provide lhe nosl
conprehensive services, allow lhe leasl independence
and are lhe nosl expensive. As noled in lhis reporls
Use and Cosls of Care seclion (page 47, average
annual cosls for nursing hones are nore lhan double
lhe average annual cosls of assisled living facililies.
Because of lhe increased cosl and loss of
independence associaled wilh placenenl in a nursing
hone, slralegies lo prevenl or delay nursing hone
placenenl are desirable. l has been eslinaled lhal
delaying longlern care by one nonlh for each person
in lhe Uniled Slales age 65 or older could save
$60 billion each year.
(187)
Two sludies have found lhal people wilh denenlia
who live alone are placed inlo nursing hones earlier,
on average, lhan olherwise sinilar people wilh
denenlia who do nol live alone.
(111, 188)
The reasons for
earlier placenenl in nursing hones are nol clear, bul
lhey nay be relaled lo lhe increased risk of
nalnulrilion, illness and fallrelaled and olher injuries
anong people wilh denenlia who live alone conpared
wilh lhose who live wilh olhers.
55
Self-Neglect
Allhough nany people wilh denenlia are able lo
perforn basic aspecls of selfcare, several sludies
have found lhal people wilh denenlia who live alone
are al increased risk of inadequale selfcare, including
nalnulrilion, unlrealed nedical condilions, inadequale
clolhing or housing, and poor hygiene.
(171, 139192

nadequale selfcare has been ciled as a cause of
increased need for energency nedical services
anong people wilh denenlia who live alone.
(190, 193
The issue of inadequale selfcare is conpounded by
lhe observalion lhal nany people who are unable lo
care for lhenselves refuse help.
(194
Falls, Wandering, Emergencies and Fatal Injuries
People wilh Alzheiners disease and olher denenlias
connonly have inpaired judgnenl, problensolving
abililies, visual perceplion and spalial perceplion, as
well as disorienlalion. These inpairnenls signifcanlly
increase lhe risk of falls.
(195196
Falls are a najor cause
of serious injury and energency deparlnenl visils in
lhe elderly.
(197
ndividuals who live alone are less likely
lo oblain linely nedical assislance when needed,
such as afler a fall.
(193
People wilh Alzheiners disease and olher denenlias,
especially lhose living alone, are also al increased risk
of wandering away fron hone unallended.
(199

vandering is a signifcanl safely risk for lhese
individuals and frequenlly ends in injuries or dealh.
(199
vhen soneone lives alone, lhere is no one lo
pronplly nolice and reporl lheir absence, lhus,
wandering forays nay be prolonged, increasing lhe
chance lhal lhey resull in injury or dealh.
The inpairnenls associaled wilh Alzheiners disease
and olher denenlias can be conpounded when an
individual lives alone. For exanple, an analysis of
household fres found lhal older people who live alone
are al higher risk of dying fron lhose fres lhan olher
older people.
(200)
n addilion, older people wilh
denenlia who live alone are nore likely lo need
energency nedical services because of self
neglecl.
(190, 193
Overall, people wilh denenlia who live
alone are al grealer risk of accidenlal dealh lhan lhose
living wilh olhers. This increased risk nay be due lo
lack of recognilion of harn and delays in seeking
nedical help.
(193
Psychiatric Symptoms
n general, people wilh Alzheiners disease and
olher denenlias have high rales of psychialric
synplons - including depression, agilalion and
psychosis - conpared wilh people who have nornal
cognilive funclion.
(176, 201206
These synplons are
associaled wilh funclional linilalions
(201)
and increased
risk of nursing hone placenenl.
(111)
Anong people
wilh denenlia, psychialric synplons have nol been
found lo be nore connon anong lhose living alone
lhan anong lhose living wilh olhers.
(176, 139
This issue
nay nol have been lhoroughly sludied, however,
because people who develop psychialric synplons
while living in lhe connunily are oflen noved lo
residenlial care facililies, where lhey are no longer
included in sludies of people living in lhe connunily.
Social Isolation and Loneliness
Social isolalion and loneliness are signifcanl problens
for people wilh denenlia who live alone.
(207)

Unforlunalely, lhese problens have received only
liniled allenlion fron research sludies.
People wilh denenlia lend lo wilhdraw fron silualions
lhal provide social supporl, such as working,
volunleering and connunily aclivilies,
(207)
exacerbaling
social isolalion and loneliness. Bul lhey also recognize
lhe inporlance of having a slrong social supporl
nelwork, having lhe reassurance of regular conlacl
wilh soneone who checks on lhen, gelling
assislance wilh daily aclivilies and having
conpanionship.
(175, 207
Fulure research lhal explores
how lo bridge lhe desire for social conneclions wilh
lhe lendency lo wilhdraw fron social experiences nay
resull in ways lo decrease lhe isolalion and loneliness
experienced by nany people wilh Alzheiners disease
and olher denenlias who live alone.
56
Caregiving for People with
Dementia Who Live Alone
Anong people wilh denenlia who live alone, as nany
as onelhird lo onehalf do nol have an idenlifable
caregiver.
(163170
Such individuals nay have lillle or no
supporl for conducling aclivilies of daily living (ADLs,
and lhey are likely lo be even nore isolaled fron
fornal sources of supporl lhan are lhose wilh a regular
caregiver. For exanple, lack of a caregiver nay hinder
lhe deleclion and diagnosis of denenlia
(175, 203209
and
place lhe individual al furlher disadvanlage wilh regard
lo accessing heallh and social services. As a
consequence, people wilh denenlia who live alone
and have no regular caregiver are nore likely lhan
lhose wilh a caregiver lo require an energency
response fron agencies providing nedical, law
enforcenenl or adull proleclive services.
(210211

n sone connunilies, infornal supporl nelworks nay
provide assislance lo people who have denenlia and
live alone in lheir hones.
(175, 211
Such nelworks nay
involve neighbors, leller carriers, ulilily service
personnel and olher individuals who provide services
lo households. These individuals can be invaluable, bul
lhey rarely have lhe resources or connilnenl lhal
dedicaled caregivers provide and lhal are oflen
needed by a person who has denenlia and lives alone.
Sone nunicipalilies have experinenled wilh prograns
lo lrain service providers how lo recognize people in
need of assislance and refer lhen lo an appropriale
agency, bul lhese prograns are nol widespread and
lheir effecliveness is nol known.
(175

Unmet Needs of People with
The preceding discussion of lhe risks experienced by
people wilh Alzheiners disease and olher denenlias
who live alone brings lo lhe forefronl nany of lhe
unnel needs of lhis populalion. Sludies specifcally
focusing on lhis issue have consislenlly found lhal
people wilh denenlia who live alone have signifcanlly
nore unnel needs lhan people wilh denenlia who
live wilh olhers.
(139, 212
Connonly idenlifed unnel
needs include:
(175, 139, 212
Having soneone lo lake care of household chores.
Celling help for selfcare.
Prevenlion of accidenls and accidenlal selfharn.
eed for social inleraclion.
Fecognilion of - and help for - psychological
distress and health issues, such as eyesight and
hearing problens.
Health Care Utilization
Sludies have exanined lhe use of heallh care and
social resources anong people wilh denenlia. osl
have found lhal lhose living alone use heallh care
services al lower rales bul social services (such as
honedelivered neals, day care and hone care
services al higher rales lhan people wilh denenlia
who live wilh olhers.
(163, 172, 191, 213217

Dala fron lhe 2003 CBS, sunnarized in Table 12,
show lhal people who had a diagnosis of denenlia
and lived alone had sinilar lolal heallh care cosls as
people who had a diagnosis of denenlia bul did nol
live alone.
(133
The lypes of heallh care services used
by lhese lwo groups differed lo sone degree, as
lhose who lived alone had higher cosls for hone
heallh care and oulpalienl heallh care inslilulions bul
lower cosls for inpalienl hospilal services, hospice
care and prescriplion nedicalions.
The CBS also collecled infornalion aboul lhe
nunber of hospilal slays and use of skilled nursing
facililies. For every 1,000 people who had denenlia
and lived alone lhere were 744 hospilal slays and
272 slays in a skilled nursing facilily. The
corresponding nunbers for people who had a
diagnosis of denenlia bul lived wilh soneone else
were 705 hospilal slays and 139 slays in a skilled
nursing facilily.
(133

57
In-Home Support Services
n recenl years, inhone supporl services for older
adulls and allied services such as lransporlalion have
becone nore widely available.
(181)
However, lhey oflen
do nol neel lhe unique needs of people wilh denenlia
who live alone, which oflen require a lrusling
relalionship so lhe affecled person is willing lo accepl
help. People wilh denenlia also need regular conlacl
and inleraclion wilh lhe sane caregivers so lhal
changes in lheir funclional abililies can be observed
and acconnodaled, lheir heallh care can be
coordinaled, and lhey have soneone lo escorl lhen
while lraveling or going lo lhe doclor. Furlher
inprovenenls in neeling lhe needs of people wilh
denenlia who live alone nay inprove lheir qualily of
life and reduce overall heallh care cosls.
(187, 218)

Conclusion
Al leasl 300,000 people in lhe Uniled Slales who have
Alzheiners disease are living alone, and people who
have olher forns of denenlia add subslanlially lo lhal
lolal. People wilh denenlia who live alone are al grealer
risk of nissed or delayed diagnosis, inadequale
selfcare, social isolalion, falls, unallended wandering,
injuries and dealh lhan people who have denenlia bul
who live wilh olhers in lhe connunily. n addilion,
lhose who live alone are nore likely lo be placed inlo
a nursing hone earlier lhan lhose who live wilh olhers,
increasing overall heallh care cosls. Beller ways lo
neel lhe needs of people who have denenlia and who
live alone nay inprove lheir qualily of life and reduce
overall heallh care cosls.
npalienl hospilal $7,377 $9,732 25'
edical care provider 7,015 6,794 +3'
Hospice 413 1,235 67'
Olher heallh care inslilulions' 3,351 1,219 +216'
Hone heallh care 2,162 1,327 +63'
Prescriplion nedicalions 3,671 4,633 21'
Total** 25,389 25,943 -2%
'Defned by edicare as inslilulional charges for hospilal oulpalienl services. vhen a palienl visils a hospilal as an oulpalienl and incurs
charges for nedical services, paynenls for heallh care providers such as physicians are recorded as edical Care Provider paynenls,
bul cosls for supplies, laboralory services, olher slaff, equipnenl and facililies are recorded as Olher inslilulions paynenls.
''Paynenls lo services do nol equal lolal paynenls exaclly, due lo lhe effecl of populalion weighling.
Crealed fron dala fron lhe edicare Currenl Benefciary Survey for 2003.
(133
lable 12: Average Per-Person Payments for Health Care Services, Medicare Beneciaries
Age 65 and Older with a Reported Diagnosis of Dementia and Who Live in the
Community, by Living Situation, 2008 Current Beneciary Survey, 2011 Dollars
Beneciaries Who Beneciaries Who Alone/Live with
Live Alone Live with Someone Else Someone Else)
Percentage

Average Costs Per Person
Difference (Live
Type of Health Care Service
53 Appendices 2012 Alzheimers Disease Facts and Figures
A1. unber of Anericans age 65 and older wilh Alzheiners disease
for 2012: The nunber 5.2 nillion is based on linear exlrapolalion fron
published prevalence eslinales for 2010 (5.1 nillion and 2020 (5.7
nillion. See Heberl LE, Scherr PA, Bienias JL, Bennell DA, Evans
DA. Alzheiners disease in lhe U.S. populalion: Prevalence eslinales
using lhe 2000 Census. Archives of eurology 2003,60:1119-22.
These prevalence nunbers are based on incidence dala fron lhe
Chicago Heallh and Aging Projecl (CHAP. A recenl analysis of CHAP
dala showed lhal lhe risk of Alzheiners did nol change over 11
years, which supporls lhe validily of a linear exlrapolalion based on
currenl census dala. See Heberl LE, Bienias JL, Aggarwal T, vilson
FS, Bennell DA, Shaw FC, el al. Change in risk of Alzheiner disease
over line. eurology 2010,75(9:73691.
A2. Proporlion of Anericans age 65 and older wilh Alzheiners
disease: The 13 percenl is calculaled by dividing lhe eslinaled
nunber of people age 65 and older wilh Alzheiners disease (5.2
nillion by lhe U.S. populalion age 65 and older in 2010, lhe lalesl
available dala fron lhe U.S. Census Bureau (40.3 nillion = 13
percenl. Thirleen percenl is lhe sane as 1 in 3.

A3. Proporlion of Anericans age 35 and older wilh Alzheiners
disease: The 45 percenl is calculaled by dividing lhe nunber of
people age 35 and older wilh Alzheiners disease (2.5 nillion by lhe
U.S. populalion age 35 and older in 2010, lhe lalesl available dala
fron lhe U.S. Census Bureau (5.5 nillion = 45 percenl. Forlyfve
percenl is nearly half.
A4. Percenlage of lolal Alzheiners disease cases by age groups:
Percenlages for each age group are based on lhe eslinaled 200,000
for people under 65, plus lhe eslinaled nunbers (in nillions for
people 65 lo 74 (0.3, 75 lo 34 (2.4, and 35+ (2.5 based on linear
exlrapolalion fron published prevalence eslinales for each age
group for 2010 and 2020. See Heberl LE, Scherr PA, Bienias JL,
Bennell DA, Evans DA. Alzheiners disease in lhe U.S. populalion:
Prevalence eslinales using lhe 2000 Census. Archives of eurology
2003,60:111922. These prevalence nunbers are based on incidence
dala fron lhe Chicago Heallh and Aging Projecl (CHAP.
A5. Differences belween CHAP and ADAS eslinales for
Alzheiners disease prevalence: The Aging, Denographics, and
enory Sludy (ADAS eslinales lhe prevalence of Alzheiners
disease lo be lower lhan does lhe Chicago Heallh and Aging Projecl
(CHAP, al 2.3 nillion Anericans age 71 and older in 2002. See
Plassnan BL, Langa K, Fisher CC, Heeringa SC, veir DF, Ofledal
B, el al. Prevalence of denenlia in lhe Uniled Slales: The Aging,
Denographics, and enory Sludy. euroepideniology
2007,29(12:12532. Al a conference convened by lhe alional
Institute on Aging and the Alzheimers Association, researchers
delernined lhal lhis discrepancy was nainly due lo lwo differences
in diagnoslic crileria: (1 a diagnosis of denenlia in ADAS required
inpairnenls in daily funclioning and (2 people delernined lo have
vascular denenlia in ADAS were nol also counled as having
Alzheiners, even if lhey exhibiled clinical synplons of Alzheiners
(see vilson FS, veir DF, Leurgans SE, Evans DA, Heberl LE, Langa
K, el al. Sources of variabilily in eslinales of lhe prevalence of
Alzheiners disease in lhe Uniled Slales. Alzheiners & Denenlia
2011,7(1:749. Because lhe nore slringenl lhreshold for denenlia in
ADAS nay niss people wilh nild Alzheiners disease and because
clinicalpalhologic sludies have shown lhal nixed denenlia due lo
bolh Alzheiners and vascular palhology in lhe brain is very connon
(see Schneider JA, Arvanilakis Z, Leurgans SE, Bennell DA. The
neuropalhology of probable Alzheiners disease and nild cognilive
inpairnenl. Annals of eurology 2009,66(2:2003, lhe Associalion
believes lhal lhe larger CHAP eslinales nay be a nore relevanl
eslinale of lhe burden of Alzheiners disease in lhe Uniled Slales.
End Notes
A6. unber of wonen and nen age 65 and older wilh Alzheiners
disease in lhe Uniled Slales: The eslinales for nunber of U.S. wonen
(3.3 nillion and nen (1.3 nillion age 65 and older wilh Alzheiners in
2010 was provided lo lhe Alzheiners Associalion by Denis Evans,
.D., on July 21, 2010, and frsl published in Shriver . The Shriver
Feporl: A vonans alion Takes on Alzheiners. Alzheiners
Associalion, Oclober 2010. The fgure is derived fron dala fron CHAP
published in Heberl LE, Scherr PA, Bienias JL, Bennell DA, Evans DA.
Alzheiners disease in lhe U.S. populalion: Prevalence eslinales using
lhe 2000 Census. Archives of eurology 2003,60:1119-22. For 2012,
we look lhe proporlion of U.S. wonen and nen age 65 and older wilh
Alzheiners in 2010 (65 percenl and 35 percenl, respeclively and
applied lhese proporlions lo lhe new eslinale for lolal nunber of
Anericans age 65 and older wilh Alzheiners (5.2 nillion lo oblain lhe
3.4 nillion and 1.3 nillion fgures.
A7. unber of seconds for developnenl of a new case of Alzheiners
disease: Allhough Alzheiners does nol presenl suddenly like slroke or
hearl allack, lhe rale al which new cases occur can be conpuled in a
sinilar way. The 63 seconds nunber is calculaled by dividing lhe
nunber of seconds in a year (31,536,000 by lhe nunber of new cases
in a year. Heberl el al. (2001 eslinaled lhal lhere would be 454,000
new cases in 2010 and 491,000 new cases in 2020. See Heberl LE,
Beckell LA, Scherr PA, Evans DA. Annual incidence of Alzheiner
disease in lhe Uniled Slales projecled lo lhe years 2000 lhrough 2050.
Alzheiner Disease & Associaled Disorders 2001,15:169-73. The
Alzheiners Associalion calculaled lhal lhe incidence of new cases in
2012 would be 461,400 by nulliplying lhe 10year change fron 454,000
lo 491,000 (37,000 by 0.2 (for lhe nunber of years fron 2010 lo 2012
divided by lhe nunber of years fron 2010 lo 2020, adding lhal resull
(7,400 lo lhe Heberl el al. (2001 eslinale for 2010 (454,000 =
461,400. The nunber of seconds in a year (31,536,000 divided by
461,400 = 63.3 seconds, rounded lo 63 seconds. Using lhe sane
nelhod of calculalion for 2050, 31,536,000 divided by 959,000 (fron
Heberl el al., 2001 = 32.3 seconds, rounded lo 33 seconds.
A3. Crileria for idenlifying subjecls wilh Alzheiners disease and olher
denenlias in lhe Franinghan Sludy: Slandard diagnoslic crileria
(DSV crileria were used lo diagnose denenlia in lhe Franinghan
Sludy, bul, in addilion, lhe subjecls had lo have al leasl noderale
denenlia according lo lhe Franinghan crileria, which is equivalenl lo a
score of 1 or nore on lhe Clinical Denenlia Faling (CDF Scale, and
lhey had lo have synplons for six nonlhs or nore. Slandard diagnoslic
crileria (lhe CDSADFDA crileria were used lo diagnose
Alzheiners disease. The exaninalion for denenlia and Alzheiners
disease is described in delail in Seshadri S, volf PA, Beiser A, Au F,
cully K, vhile F, el al. Lifeline risk of denenlia and Alzheiners
disease: The inpacl of norlalily on risk eslinales in lhe Franinghan
Sludy. eurology 1997,49:1493-504.
A9. unber of baby booners who will develop Alzheiners disease and
other dementias: The nunbers for renaining lifeline risk of Alzheiners
disease and olher denenlias for baby booners were developed by lhe
Alzheiners Associalion by applying lhe dala provided lo lhe Associalion
on renaining lifeline risk by Alexa Beiser, Ph.D., Sudha Seshadri, .D.,
Fhoda Au, Ph.D., and Philip A. volf, .D., fron lhe Deparlnenls of
eurology and Bioslalislics, Boslon Universily Schools of edicine and
Public Heallh, lo U.S. Census dala for lhe nunber of wonen and nen
age 43 lo 61 in ovenber 2007, used here lo eslinale lhe nunber of
wonen and nen age 44 lo 62 in 2003.
59 2012 Alzheimers Disease Facts and Figures Appendices
A10. Slalebyslale prevalence of Alzheiners disease: These
slalebyslale prevalence nunbers are based on incidence dala fron
lhe Chicago Heallh and Aging Projecl (CHAP, projecled lo each slales
populalion, wilh adjuslnenls for slalespecifc gender, years of
educalion, race and norlalily. See Heberl LE, Scherr PA, Bienias JL,
Bennell DA, Evans DA. Slalespecifc projeclions lhrough 2025 of
Alzheiners disease prevalence. eurology 2004,62:1645.
A11. The projecled nunber of people wilh Alzheiners disease cones
fron lhe CHAP sludy: See Heberl LE, Scherr PA, Bienias JL, Bennell
DA, Evans DA. Alzheiners disease in lhe U.S. populalion: Prevalence
eslinales using lhe 2000 Census. Archives of eurology 2003,60:1119
22. Olher projeclions are sonewhal lower (see Brookneyer F, Cray S,
Kawas C. Projeclions of Alzheiners disease in lhe Uniled Slales and
lhe public heallh inpacl of delaying disease onsel. Anerican Journal of
Public Heallh 1993,33(9:133742 because lhey relied on nore
conservalive nelhods for counling people who currenlly have
Alzheiners disease.
A5
onelheless, lhese eslinales are slalislically
consislenl wilh each olher, and all projeclions suggesl subslanlial
growlh in lhe nunber of people wilh Alzheiners disease over lhe
coning decades.
A12. unber of fanily and olher unpaid caregivers of people wilh
Alzheimers and other dementias: To calculale lhis nunber, lhe
Alzheiners Associalion slarled wilh dala fron lhe Behavioral Fisk
Faclor Surveillance Syslen (BFFSS. n 2009, lhe BFFSS survey asked
respondenls age 13 and over whelher lhey had provided any regular
care or assislance during lhe pasl nonlh lo a fanily nenber or friend
who had a heallh problen, longlern illness or disabilily. To delernine
lhe nunber of fanily and olher unpaid caregivers nalionally and by slale,
we applied lhe proporlion of caregivers nalionally and for each slale
fron lhe 2009 BFFSS (as provided by lhe Cenlers for Disease Conlrol
and Prevenlion, Heallhy Aging Progran, unpublished dala lo lhe
nunber of people age 13 and older nalionally and in each slale fron lhe
U.S. Census Bureau reporl for July 2011. Available al www.census.gov/
popesl/dala. Accessed on Jan. 5, 2012. To calculale lhe proporlion of
fanily and olher unpaid caregivers who provide care for a person wilh
Alzheiners or olher denenlias, we used dala fron lhe resulls of a
nalional lelephone survey conducled in 2009 for lhe alional Alliance
for Caregiving (AC/AAFP (alional Alliance for Caregiving, Caregiving
in lhe U.S.: Execulive Sunnary, ovenber 2009. Available al www.
caregiving.org/dala/CaregivingUSAllAgesExecSun.pdf. The AC/
AAFP survey asked respondenls age 13 and over whelher lhey were
providing unpaid care for a relalive or friend age 13 or older or had
provided such care during lhe pasl 12 nonlhs. Fespondenls who
answered affrnalively were lhen asked aboul lhe heallh problens of
lhe person for whon lhey provided care. n response, 26 percenl of
caregivers said lhal: (1 Alzheiners or denenlia was lhe nain problen
of lhe person for whon lhey provided care, or (2 lhe person had
Alzheiners or olher nenlal confusion in addilion lo his or her nain
problen. ve applied lhe 26 percenl fgure lo lhe lolal nunber of
caregivers nalionally and in each slale.
A13. Alzheiners Associalion 2010 vonen and Alzheiners Poll: This
poll conlacled 3,113 adulls nalionwide by lelephone fron Aug. 25 lo
Sepl. 3, 2010. Telephone nunbers were randonly chosen in separale
sanples of landline and cell phone exchanges across lhe nalion,
allowing lisled and unlisled nunbers lo be conlacled, and nulliple
allenpls were nade lo conlacl each nunber. vilhin households,
individuals were randonly selecled. nlerviews were conducled in
English and Spanish. The survey oversanpled AfricanAnericans and
Hispanics, selecled fron U.S. Census lracls wilh higher lhan 3 percenl
concenlralion of each group. l also included an oversanple of
AsianAnericans using a lisled sanple of AsianAnerican households.
The conbined sanples include: 2,295 while, nonHispanic, 326
AfricanAnerican, 309 Hispanic, 305 AsianAnerican, and 135
respondenls of anolher race. Cases were weighled lo accounl for
differenlial probabililies of seleclion and lo accounl for overlap in lhe
landline and cell phone sanpling franes. The sanple was adjusled lo
nalch U.S. Census denographic benchnarks for gender, age,
educalion, race/elhnicily, region and lelephone service. The resulling
inlerviews conprise a probabililybased, nalionally represenlalive
sanple of U.S. adulls. This nalional survey included 202 caregivers of
people wilh Alzheiners or olher denenlias. This was supplenenled
wilh 300 inlerviews fron a lisled sanple of caregivers of people wilh
Alzheiners for a lolal of 502 caregiver inlerviews. A caregiver was
defned as an adull over age 13 who, in lhe pasl 12 nonlhs, provided
unpaid care lo a relalive or friend age 50 or older wilh Alzheiners or
olher denenlias. The weighl of lhe caregiver sanple adjusled all 502
caregiver cases lo lhe weighled eslinales for gender and race/elhnicily
derived fron lhe base survey of caregivers. Oueslionnaire design and
inlerviewing were conducled by Abl SFB of ew York. Susan Pinkus of
S.H. Pinkus Fesearch and Associales coordinaled lhe polling and helped
in lhe analysis of lhe poll dala.
A14. unber of hours of unpaid care: To calculale lhis nunber, lhe
Alzheiners Associalion used dala fron a followup analysis of resulls
fron lhe 2009 AC/AAFP nalional lelephone survey (dala provided
under conlracl by allhew Creenwald and Associales, ov. 11, 2009.
These dala show lhal caregivers of people wilh Alzheiners and olher
denenlias provided an average of 21.9 hours a week of care, or 1,139
hours per year. ve nulliplied lhe nunber of fanily and olher unpaid
caregivers (15,243,740 by lhe average hours of care per year (1,139,
which equals 17,365,265,473 hours of care.
A15. Value of unpaid caregiving: To calculale lhis nunber, lhe
Alzheiners Associalion used lhe nelhod of Ano el al. (see Ano PS,
Levine C, ennoll . The econonic value of infornal caregiving.
Heallh Affairs 1999,13:132-3. This nelhod uses lhe average of lhe
federal nininun hourly wage ($7.25 in 2011 and lhe nean hourly wage
of hone heallh aides ($16.99 in July 2011 see U.S. Deparlnenl of
Labor, Bureau of Labor Slalislics. Enploynenl, Hours, and Earnings
fron Currenl Enploynenl Slalislics Survey. Series 10CEU
6562160003, Hone Heallh Care Services (ACS code 6216, Average
Hourly Earnings, July 2011. Available al www.bls.gov/ces.. The average
is $12.12. ve nulliplied lhe nunber of hours of unpaid care by $12.12,
which equals $210,467,017,597.

A16. Higher heallh care cosls of Alzheiners caregivers: This fgure is
based on a nelhodology originally developed by Brenl Fullon, Ph.D.,
for The Shriver Feporl: A vonans alion Takes on Alzheiners. A
survey of 17,000 enployees of a nullinalional frn based in lhe
Uniled Slales eslinaled lhal caregivers heallh care cosls were 3
percenl higher lhan noncaregivers (Alberl S, Schulz F. The
elLife Sludy of vorking Caregivers and Enployer Heallh Care
Cosls, ew York, .Y.: elLife alure arkel nslilule, 2010. To
delernine lhe dollar anounl represenled by lhal 3 percenl fgure
nalionally and in each slale, lhe 3 percenl fgure and lhe proporlion
of caregivers fron lhe 2009 Behavioral Fisk Faclor Surveillance
Syslen
A12
were used lo weighl each slales caregiver and
noncaregiver per capila personal heallh care spending in 2009,
inHaled lo 2011 dollars (Cenlers for edicare and edicaid Services,
Cenler for Slralegic Planning, Heallh Expendilures by Slale of
Fesidence 19912009. Available al www.cns.gov/alional
HeallhExpend Dala/05_alionalHeallhAccounlsSlaleHeallh
AccounlsFesidence.asp#TopOfPage. Accessed on Dec. 30, 2011..
The dollar anounl difference belween lhe weighled per capila
personal heallh care spending of caregivers and noncaregivers in
each slale (reHecling lhe 3 percenl higher cosls for caregivers
produced lhe average addilional heallh care cosls for caregivers in
each slale. alionally, lhis lranslaled inlo an average of $567. The
anounl of lhe addilional cosl in each slale, which varied by slale
fron a low of $413 in Ulah lo a high of $365 in lhe Dislricl of
Colunbia, was nulliplied by lhe lolal nunber of unpaid Alzheiners
and denenlia caregivers in lhal slale
A12
lo arrive al lhal slales lolal
addilional heallh care cosls of Alzheiners and olher denenlia
caregivers as a resull of being a caregiver. Fullon concluded lhal lhis
is likely lo be a conservalive eslinale because caregiving for people
wilh Alzheiners is nore slressful lhan caregiving for nosl people
who donl have lhe disease.
(116

A17. Lewin odel on Alzheiners and denenlia and cosls: These
nunbers cone fron a nodel crealed for lhe Alzheiners Associalion
by The Lewin Croup. The nodel eslinales lolal paynenls for
connunilybased heallh care services using dala fron lhe edicare
Currenl Benefciary Survey (CBS. The nodel was conslrucled
based on 2004 CBS dala, lhose dala have been replaced wilh lhe
nore recenl 2003 CBS dala.
A19
ursing facilily care cosls in lhe
nodel are based on The Lewin Croups LongTern Care Financing
odel. ore infornalion on lhe nodel, ils longlern projeclions and
ils nelhodology is available al www.alz.org/lrajeclory.
A13. All cosl eslinales were inHaled lo year 2011 dollars using lhe
Consuner Price ndex (CP: All Urban Consuners seasonally
adjusled average prices for nedical care services. The relevanl ilen
wilhin nedical care services was used for each cosl elenenl (e.g.,
lhe nedical care services ilen wilhin lhe CP was used lo inHale
lolal heallh care paynenls, lhe hospilal services ilen wilhin lhe CP
was used lo inHale hospilal paynenls, lhe nursing hone and adull
day services ilen wilhin lhe CP was used lo inHale nursing hone
paynenls.
A19. edicare Currenl Benefciary Survey Feporl: These data come
fron an analysis of fndings fron lhe 2003 edicare Currenl
Benefciary Survey (CBS. The analysis was conducled for lhe
Alzheiners Associalion by Julie Bynun, .D., .P.H., Darlnoulh
nslilule for Heallh Policy and Clinical Care, Cenler for Heallh Policy
Fesearch. The CBS, a conlinuous survey of a nalionally
represenlalive sanple of aboul 16,000 edicare benefciaries, is
linked lo edicare Parl B clains. The survey is supporled by lhe U.S.
Cenlers for edicare and edicaid Services (CS. For connunily
dwelling survey parlicipanls, CBS inlerviews are conducled in
person lhree lines a year wilh lhe edicare benefciary or a proxy
respondenl if lhe benefciary is nol able lo respond. For survey
parlicipanls who are living in a nursing hone or anolher residenlial
care facilily, such as an assisled living residence, relirenenl hone or
a longlern care unil in a hospilal or nenlal heallh facilily, CBS
inlerviews are conducled wilh a nurse who is faniliar wilh lhe
survey parlicipanl and his or her nedical record. Dala fron lhe
CBS analysis lhal are included in 2012 Alzheimers Disease Facts
and Figures perlain only lo edicare benefciaries age 65 and older.
For lhis CBS analysis, people wilh denenlia are defned as:
Connunilydwelling survey parlicipanls who answered yes lo lhe
CBS queslion, Has a doclor ever lold you lhal you had
Alzheiners disease or denenlia? Proxy responses lo lhis
queslion were accepled.
Survey parlicipanls who were living in a nursing hone or olher
residenlial care facilily and had a diagnosis of Alzheiners disease
or denenlia in lheir nedical record.
Survey parlicipanls who had al leasl one edicare clain wilh a
diagnoslic code for Alzheiners disease or olher denenlias in
2003: The clain could be for any edicare service, including
hospilal, skilled nursing facilily, oulpalienl nedical care, hone
heallh care, hospice or physician or olher heallh care provider visil.
The diagnoslic codes used lo idenlify survey parlicipanls wilh
Alzheiners disease and olher denenlias are 331.0, 331.1, 331.11,
331.19, 331.2, 331.7, 331.32, 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.
A20. Percenlage of Anericans age 65 or older who live alone: The
percenlage and lolal nunber of Anericans age 65 or older who live
alone were calculaled fron lhe ciled lable, which was conpiled by
lhe U.S. Census Bureau fron dala oblained during lhe arch Currenl
Populalion Survey for lhe alion (U.S. Census Bureau. Anericas
Fanilies and Living Arrangenenls: 2011. Table A2: Fanily Slalus and
Household Felalionship of People 15 Years and Over, by arilal
Slalus, Age, and Sex. Available al www.census.gov/populalion/
www/socdeno/hhfan/cps2011.hlnl. The lolal was calculaled by
sunning lhe nunber of householders (of bolh sexes and all narilal
slaluses who lived alone for lhe lhree age calegories of 65 lo 74
years, 75 lo 34 years, and 35+. The percenlage was calculaled by
dividing lhe lolal nunber of householders who lived alone by lhe
lolal nunber of people in lhe sane age ranges. Dala for lhe graph of
age and sexspecifc values were oblained fron lhe sexspecifc
seclions (all narilal slaluses of lhe sane Census Bureau lable.
A21. CBS eslinales of lhe percenlage and nunber of Anericans
who live alone: Parlicipanls in lhe CBS and lhose having a
diagnosis of denenlia were idenlifed, and dala aboul heallh care
ulilizalion by lhese individuals were collecled in 2003. Anyone who
reporled living in a facilily lhal provides residenlial supporl for any
parl of lhe year was nol considered lo be living in lhe connunily.
People who lived in lhe connunily for lhe enlire year were asked
how nany people lived in lheir household, including lhenselves.
Those living in lhe connunily and lisling only one household
nenber were idenlifed as living alone.
19. ayeux F, Sano , Chen J, Talenichi T, Slern Y. Fisk of denen
lia in frsldegree relalives of palienls wilh Alzheiners disease
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20. Laulenschlager T, Cupples LA, Fao VS, Auerbach SA, Becker
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21. Ansley KJ, von Sanden C, Salin A, OKearney F. Snoking as a
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22. Fusanen , Kivipello , Ouesenberry CP, Zhou J, vhilner FA.
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2012 Alzheimers Disease Facts and Figures Appendices 67
The Alzheiners Associalion acknowledges lhe
conlribulions of Lisa Frednan, Ph.D., Bryan D. Janes, Ph.D.,
Tricia J. Johnson, Ph.D., Ken P. Scholz, Ph.D., and
Jennifer veuve, .P.H., Sc.D., in lhe preparalion of
2012 Alzheimers Disease Facts and Figures.
The Alzheimers Association is the worlds leading voluntary health
organization in Alzheimers care, support and research. Our mission is
to eliminate Alzheimers 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 Alzheimers disease.
Alzheimers Association
National Ofce
225 N. Michigan Ave., Fl. 17
Chicago, IL 60601-7633
Alzheimers Association
Public Policy Ofce
1212 New York Ave., N.W., Suite 800
Washington, DC 20005-6105
800.272.3900
alz.org

2012 Alzheimers Association. All rights reserved.
This is an ofcial publication of the Alzheimers
Association but may be distributed by unafliated
organizations and individuals. Such distribution does
not constitute an endorsement of these parties or
their activities by the Alzheimers Association.

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