alzheimer's associaton's 2010 alzheimer's disease facts ... · pdf filecontents...
Post on 12-Mar-2018
218 Views
Preview:
TRANSCRIPT
Alzheimer’s Disease Facts and Figures 2010
5.3million people
have Alzheimer’s
7thleading cause
of death
10.9million unpaid
caregivers
172billion dollars in
annual costs
Includes a Special Report on Race, Ethnicity and Alzheimer’s Disease
®
Alzheimer’s Association, 2010 Alzheimer’s Disease Facts and Figures, Alzheimer’s & Dementia, Volume 6
About This Report
2010 Alzheimer’s Disease Facts and Figures provides a statistical resource for United States data related to Alzheimer’s 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 includes definitions of the types of dementia and a summary of current knowledge about Alzheimer’s disease. Additional sections address prevalence, mortality, caregiving and use and costs of care and services. The Special Report for 2010 focuses on race, ethnicity and Alzheimer’s disease.
1 2010 Alzheimer’s Disease Facts and Figures
•Overall number of Americans with Alzheimer’s disease nationally and for each state
•ProportionofwomenandmenwithAlzheimer’sandotherdementias
•EstimatesoflifetimeriskfordevelopingAlzheimer’sdisease
•Numberoffamilycaregivers,hoursofcareprovided,economicvalueofunpaidcare
nationallyandforeachstateandtheimpactofcaregivingoncaregivers
•Useandcostsofhealthcare,long-termcareandhospicecareforpeoplewith
Alzheimer’s disease and other dementias
•NumberofdeathsduetoAlzheimer’sdiseasenationallyandforeachstate,and
death rates by age
•CurrentknowledgeoftheprevalenceofAlzheimer’sandotherdementiasin
diversepopulations
TheAppendicesdetailsourcesandmethodsusedtoderivedatainthisdocument.
Thisreportfrequentlycitesstatisticsthatapplytoindividualswithalltypesofdementia.
Whenpossible,specificinformationaboutAlzheimer’sdiseaseisprovided;inothercases,
thereferencemaybeamoregeneraloneof“Alzheimer’sdiseaseandotherdementias.”
TheconclusionsinthisreportreflectcurrentlyavailabledataonAlzheimer’sdisease.
TheyaretheinterpretationsoftheAlzheimer’sAssociation.
Specific information in this year’s Alzheimer’s Disease Facts and Figures
2 Contents 2010 Alzheimer’s Disease Facts and Figures
Contents
Overview of Alzheimer’s Disease 4
Dementia:DefinitionandSpecificTypes 5
More About Alzheimer’s Disease 7
SymptomsofAlzheimer’sDisease 7
RiskFactorsforAlzheimer’sDisease 7
TreatmentandPreventionofAlzheimer’sDisease 8
Prevalence 9
PrevalenceofAlzheimer’sDiseaseandOtherDementias 10
LifetimeRiskEstimatesforAlzheimer’sDisease 11
EstimatesfortheNumbersofPeoplewithAlzheimer’sDiseasebyState 12
CausesofDementia 14
LookingtotheFuture 14
Mortality 17
DeathsfromAlzheimer’sDisease 18
State-by-StateDeathsfromAlzheimer’sDisease 19
Death Rates by Age 21
Caregiving 22
PaidCaregiving 23
FamilyCaregiving 23
NumberofCaregivers 23
Caregivers’PerceptionofthePerson’sMainHealthProblem 23
HoursofUnpaidCare 24
EconomicValueofCaregiving 25
WhoaretheCaregivers? 25
“SandwichGeneration”Caregivers 26
Long-DistanceCaregivers 26
CaregivingTasks 26
DurationofCaregiving 27
ImpactofCaregiving 28
3 2010 Alzheimer’s Disease Facts and Figures Contents
Use and Costs of Health Care, Long-Term Care and Hospice 33
TotalPaymentsforHealthCare,Long-TermCareandHospice 34
CoststoU.S.BusinessesofCareforPeoplewithAlzheimer’sandOtherDementias 35
UseandCostsofHealthcareServices 35
UseandCostsofLong-TermCareServices 39
Out-of-PocketCostsforHealthcareandLong-TermCareServices 44
UseandCostsofHospiceCare 45
Special Report: Race, Ethnicity and Alzheimer’s Disease 46
UnderstandingtheConceptsofRaceandEthnicity 49
PrevalenceofCognitiveImpairmentinOlderWhites,African-AmericansandHispanics 49
PrevalenceofAlzheimer’sDiseaseandOtherDementiasinOlderWhites, African-Americans andHispanics 51
Alzheimer’sAssociationEstimatesofthePrevalenceofAlzheimer’sDiseaseandOther DementiasinWhites,African-AmericansandHispanics 54
RelationshipofGeneticFactorsandPrevalence of Alzheimer’s Disease and Dementia in DifferentRacialandEthnicGroups 54
RelationshipofCertainDiseasesandPrevalenceofAlzheimer’sDiseaseandDementiain DifferentRacialandEthnicGroups 55
RelationshipofSocioeconomicCharacteristicsandPrevalence of Alzheimer’s Disease andOtherDementiasinDifferentRacialandEthnicGroups 57
Diagnosis of Alzheimer’s Disease and Other Dementias in Different Racial and EthnicGroups 58
UseandCostsofMedicalServicesforDifferentRacialandEthnicGroups 61
Appendices 62
EndNotes 62
References 65
Alzheimer’s disease is the most common cause of dementia. This section provides information about the definition of dementia, the characteristics of specific types of dementia and the symptoms of, risk factors for and treatment of Alzheimer’s disease. More detailed information on these topics is available at www.alz.org.
1 Overview of Alzheimer’s Disease
5
Dementia: Definition and Specific Types
Dementia is characterized by the loss of or decline in memory
andothercognitiveabilities.Itiscausedbyvariousdiseases
andconditionsthatresultindamagedbraincells.Tobeclassi-
fiedasdementia,thefollowingcriteriamustbemet:
•Itmustincludedeclineinmemoryandinatleastoneofthe
following cognitive abilities:
1)Abilitytogeneratecoherentspeechorunderstand
spokenorwrittenlanguage;
2 ) Ability to recognize or identify objects, assuming intact
sensoryfunction;
3 )Abilitytoexecutemotoractivities,assumingintact
motorabilities,sensoryfunctionandcomprehensionofthe
requiredtask;and
4 )Abilitytothinkabstractly,makesoundjudgments
andplanandcarryoutcomplextasks.
•Thedeclineincognitiveabilitiesmustbesevere
enoughtointerferewithdailylife.
Differenttypesofdementiahavebeenassociated
withdistinctsymptompatternsanddistinguishing
microscopicbrainabnormalities.Increasingevidence
fromlong-termepidemiologicalobservationand
autopsystudiessuggeststhatmanypeoplehavebrain
abnormalitiesassociatedwithmorethanonetypeof
dementia.Thesymptomsofdifferenttypesofdementia
alsooverlapandcanbefurthercomplicatedbycoex-
istingmedicalconditions.Table1providesinformation
aboutthemostcommontypesofdementia.
Alzheimer’s disease
Vascular dementia(also known as multi-infarct or post-stroke dementia or vascular cognitive impairment)
Mixed dementia
Mostcommontypeofdementia;accountsforanestimated60–80percentofcases.
Difficultyrememberingnamesandrecenteventsisoftenanearlyclinicalsymptom;
apathyanddepressionarealsooftenearlysymptoms.Latersymptomsinclude
impairedjudgment,disorientation,confusion,behaviorchangesanddifficultyspeaking,
swallowingandwalking.
Hallmarkabnormalitiesaredepositsoftheproteinfragmentbeta-amyloid(plaques)and
twistedstrandsoftheproteintau(tangles).
Consideredthesecondmostcommontypeofdementia.
Impairmentiscausedbydecreasedbloodflowtopartsofthebrain,oftenduetoa
seriesofsmallstrokesthatblockarteries.
SymptomsoftenoverlapwiththoseofAlzheimer’s,althoughmemorymaynotbeas
seriouslyaffected.
CharacterizedbythehallmarkabnormalitiesofAlzheimer’sandanothertypeof
dementia—mostcommonlyvasculardementia,butalsoothertypes,suchasdemen-
tiawithLewybodies.
Recentstudiessuggestthatmixeddementiaismorecommonthanpreviouslythought.
Table 1: Common Types of Dementia and Their Typical Characteristics
Type of Dementia Characteristics
2010 Alzheimer’s Disease Facts and Figures Overview of Alzheimer’s Disease
6
Table 1 (Continued): Common Types of Dementia and Their Typical Characteristics
Type of Dementia Characteristics
Dementia with
Lewy bodies
Parkinson’sdisease
Frontotemporal
dementia
Creutzfeldt-Jakob
disease
Normalpressure
hydrocephalus
PatternofdeclinemaybesimilartoAlzheimer’s,includingproblemswithmemory
andjudgmentaswellasbehaviorchanges.
Alertnessandseverityofcognitivesymptomsmayfluctuatedaily.
Visualhallucinations,musclerigidityandtremorsarecommon.
HallmarksincludeLewybodies(abnormaldepositsoftheproteinalpha-synuclein)
thatforminsidenervecellsinthebrain.
ManypeoplewhohaveParkinson’sdisease(adisorderthatusuallyinvolvesmovement
problems)alsodevelopdementiainthelaterstagesofthedisease.
ThehallmarkabnormalityisLewybodies(abnormaldepositsoftheproteinalpha-
synuclein)thatforminsidenervecellsinthebrain.
Involvesdamagetobraincells,especiallyinthefrontandsideregionsofthebrain.
Typicalsymptomsincludechangesinpersonalityandbehavioranddifficultywith
language.
Nodistinguishingmicroscopicabnormalityislinkedtoallcases.
Pick’sdisease,characterizedbyPick’sbodies,isonetypeoffrontotemporaldementia.
Rapidlyfataldisorderthatimpairsmemoryandcoordinationandcausesbehavior
changes.
VariantCreutzfeldt-Jakobdiseaseisbelievedtobecausedbyconsumptionofproducts
fromcattleaffectedbymadcowdisease.
Causedbythemisfoldingofprionproteinthroughoutthebrain.
Causedbythebuildupoffluidinthebrain.
Symptomsincludedifficultywalking,memorylossandinabilitytocontrolurination.
Cansometimesbecorrectedwithsurgicalinstallationofashuntinthebrainto
drainexcessfluid.
Overview of Alzheimer’s Disease 2010 Alzheimer’s Disease Facts and Figures
7
More About Alzheimer’s Disease
InAlzheimer’sdisease,asinothertypesofdementia,
increasingnumbersofnervecellsdeteriorateanddie.
A healthy adult brain has 100 billion nerve cells, or
neurons,withlongbranchingextensionsconnectedat
100trillionpoints.Attheseconnections,called
synapses,informationflowsintinychemicalpulses
releasedbyoneneuronandtakenupbythereceiving
cell.Differentstrengthsandpatternsofsignalsmove
constantly through the brain’s circuits, creating the
cellularbasisofmemories,thoughtsandskills.
In Alzheimer’s disease, information transfer at the
synapsesbeginstofail,thenumberofsynapses
declinesandeventuallycellsdie.Brainswithadvanced
Alzheimer’sshowdramaticshrinkagefromcellloss
andwidespreaddebrisfromdeadanddyingneurons.
Symptoms of Alzheimer’s Disease
Alzheimer’sdiseasecanaffectdifferentpeoplein
differentways,butthemostcommonsymptom
patternbeginswithgraduallyworseningdifficultyin
rememberingnewinformation.Thisisbecause
disruptionofbraincellsusuallybeginsinregions
involvedinformingnewmemories.Asdamage
spreads,individualsexperienceotherdifficulties.
The following are warning signs of Alzheimer’s:
•Memorylossthatdisruptsdailylife
•Challengesinplanningorsolvingproblems
•Difficultycompletingfamiliartasksathome,atwork
or at leisure
•Confusionwithtimeorplace
•Troubleunderstandingvisualimagesandspatial
relationships
•Newproblemswithwordsinspeakingorwriting
•Misplacingthingsandlosingtheabilitytoretrace
steps
•Decreasedorpoorjudgment
•Withdrawalfromworkorsocialactivities
•Changesinmoodandpersonality
For more information about the warning signs of
Alzheimer’s, visit www.alz.org/10signs.
InadvancedAlzheimer’s,peopleneedhelpwith
bathing, dressing, using the bathroom, eating and
otherdailyactivities.Thoseinthefinalstagesofthe
disease lose their ability to communicate, fail to
recognizelovedonesandbecomebed-boundand
relianton24/7care.Theinabilitytomovearoundin
late-stageAlzheimer’sdiseasecanmakeaperson
morevulnerabletoinfections,includingpneumonia
(infectionofthelungs).Alzheimer’sdiseaseisulti-
matelyfatal,andAlzheimer-relatedpneumoniaisoften
thecause.
Althoughfamiliesgenerallyprefertokeeptheperson
withAlzheimer’sathomeaslongaspossible,most
peoplewiththediseaseeventuallymoveintoanursing
homeoranotherresidencewhereprofessionalcare
isavailable.
Risk Factors for Alzheimer’s Disease
Although the cause or causes of Alzheimer’s disease
arenotyetknown,mostexpertsagreethat
Alzheimer’s,likeothercommonchronicconditions,
probablydevelopsasaresultofmultiplefactorsrather
thanasinglecause.
ThegreatestriskfactorforAlzheimer’sdiseaseis
advancingage,butAlzheimer’sisnotanormalpartof
aging.MostAmericanswithAlzheimer’sdiseaseare
aged65orolder,althoughindividualsyoungerthan
age65canalsodevelopthedisease.
When Alzheimer’s or another dementia is recognized
inapersonunderage65,theseconditionsarereferred
toas“younger-onset”or“early-onset”Alzheimer’sor
“younger-onset”or“early-onset”dementia.
AsmallpercentageofAlzheimer’sdiseasecases,
probablylessthan1percent,arecausedbyrare
genetic variations found in a small number of families
worldwide.Thesevariationsinvolvechromosome21
onthegenefortheamyloidprecursorprotein,
2010 Alzheimer’s Disease Facts and Figures Overview of Alzheimer’s Disease
8
chromosome14onthegeneforthepresenilin1protein
andchromosome1onthegeneforpresenilin2.In
these inherited forms of Alzheimer’s, the disease tends
todevelopbeforeage65,sometimesinindividualsas
youngas30.
Ageneticfactorinlate-onsetAlzheimer’sdisease
(Alzheimer’sdiseasedevelopingatage65orolder)is
apolipoproteinE-e4(ApoE-e4).ApoE-e4isoneofthree
commonformsoftheApoEgene,whichprovidesthe
blueprintforaproteinthatcarriescholesterolinthe
bloodstream.EveryoneinheritsoneformoftheApoE
genefromeachofhisorherparents.Thosewhoinherit
oneApoE-e4genehaveincreasedriskofdeveloping
Alzheimer’sdisease.ThosewhoinherittwoApoE-e4
geneshaveanevenhigherrisk.However,inheritingone
ortwocopiesofthegenedoesnotguaranteethatthe
individualwilldevelopAlzheimer’s.
Asignificantportionofpeoplewithmildcognitive
impairment(MCI),butnotall,willlaterdevelop
Alzheimer’s.MCIisaconditioninwhichapersonhas
problemswithmemory,languageoranotheressential
cognitive function that are severe enough to be
noticeabletoothersandshowuponcognitivetests,
butnotsevereenoughtointerferewithdailylife.
Studiesindicatethatasmanyas10–20percentof
peopleaged65andolderhaveMCI.PeoplewhoseMCI
symptomscausethemenoughconcerntovisita
physicianappeartohaveahigherriskofdeveloping
dementia.It’sestimatedthatasmanyas15percentof
theseindividualsprogressfromMCItodementiaeach
year.Fromthisestimate,nearlyhalfofallpeoplewho
havevisitedaphysicianaboutMCIsymptomswill
developdementiainthreeorfouryears.Itisunclear
whichmechanismsputthosewithMCIatgreaterrisk
fordevelopingAlzheimer’sorotherdementia.MCImay
insomecasesrepresentatransitionalstatebetween
normalagingandtheearliestsymptomsofAlzheimer’s.
Treatment and Prevention of Alzheimer’s Disease
Notreatmentisavailabletosloworstopthedeteriora-
tionofbraincellsinAlzheimer’sdisease.TheU.S.Food
andDrugAdministrationhasapprovedfivedrugsthat
temporarilyslowworseningofsymptomsforaboutsix
to 12 months, on average, for about half of the individ-
ualswhotakethem.Researchershaveidentified
treatmentstrategiesthatmayhavethepotentialto
changeitscourse.Approximately90experimental
therapiesaimedatslowingorstoppingtheprogression
ofAlzheimer’sareinclinicaltestinginhumanvolunteers.
Despitethecurrentlackofdisease-modifyingtherapies,
studies have consistently shown that active medical
management of Alzheimer’s and other dementias can
significantlyimprovequalityoflifethroughallstagesof
the disease for diagnosed individuals and their care-
givers.Activemanagementincludesappropriateuseof
availabletreatmentoptions,effectiveintegrationof
coexistingconditionsintothetreatmentplan,coordina-
tionofcareamongphysiciansandothersinvolvedin
maximizingqualityoflifeforpeoplewithAlzheimer’sor
otherdementiaanduseofsuchsupportiveservicesas
counseling,activityandsupportgroupsandadultday
centerprograms.
A growing body of evidence suggests that the health of
the brain — one of the body’s most highly vascular
organs—iscloselylinkedtotheoverallhealthofthe
heartandbloodvessels.Somedataindicatethat
managementofcardiovascularriskfactors,suchashigh
cholesterol,Type2diabetes,highbloodpressure,
smoking,obesityandphysicalinactivitymayhelpavoid
ordelaycognitivedecline.(1-9)Manyoftheseriskfactors
aremodifiable—thatis,theycanbechangedto
decreasethelikelihoodofdevelopingbothcardiovascular
disease and the cognitive decline associated with
Alzheimer’sandotherformsofdementia.Morelimited
datasuggestthatalow-fatdietrichinfruitsandvegeta-
blesmaysupportbrainhealth,asmayarobustsocial
networkandalifetimeofintellectualcuriosityand
mentalstimulation.
Overview of Alzheimer’s Disease 2010 Alzheimer’s Disease Facts and Figures
Millions of Americans now have Alzheimer’s disease or another dementia. More women than men have dementia, primarily because women live longer, on average, than men. This longer life expectancy increases the time during which women could develop Alzheimer’s or other dementia.
Prevalence2
10
Estimatesfromdifferentstudiesontheprevalenceand
characteristicsofpeoplewithAlzheimer’sandother
dementiasvarydependingonhoweachstudywas
conducted.Datafromseveralstudiesareusedinthis
sectiontodescribetheprevalenceoftheseconditions
andtheproportionofpeoplewiththeconditionsby
genderandyearsofeducation.Datasourcesand
study methods are described, and more detailed
informationiscontainedintheEndNotessectionin
theAppendices.
Prevalence of Alzheimer’s Disease and Other Dementias
Anestimated5.3millionAmericansofallageshave
Alzheimer’sdisease.Thisfigureincludes5.1million
peopleaged65andolder(10) and 200,000 individuals
underage65whohaveyounger-onsetAlzheimer’s.(11)
The Alzheimer’s Association estimates that there are
500,000Americansyoungerthan65withAlzheimer’s
andotherdementias.Ofthese,approximately
40percentareestimatedtohaveAlzheimer’s.
•Oneineightpeopleaged65andolder(13percent)
haveAlzheimer’sdisease.A1
•Every70seconds,someoneinAmericadevelops
Alzheimer’s.Bymid-century,someonewilldevelop
thediseaseevery33seconds.A2
Prevalence of Alzheimer’s Disease and Other
Dementias in Women and Men
WomenaremorelikelythanmentohaveAlzheimer’s
diseaseandotherdementias.Basedonestimates
fromtheAging,Demographics,andMemoryStudy
(ADAMS),14percentofallpeopleaged71andolder
havedementia.(12) As shown in Figure 1, women aged
71andolderhadhigherratesthanmen:16percentfor
womenand11percentformen.
Further analysis of these data shows that the larger
proportionofolderwomenthanmenwhohave
dementiaisprimarilyexplainedbythefactthatwomen
livelongeronaveragethanmen.(12)Likewise,many
studiesoftheage-specificincidence(newcases)
ofdementiahavefoundnosignificantdifferenceby
gender.(13-17)
Asimilarexplanationisbelievedtobetruefor
Alzheimer’sdisease.Thelargerproportionofolder
women than men who have Alzheimer’s disease is
believedtobeexplainedbythefactthatwomenlive
longer.(12)Again,manystudiesoftheage-specific
incidenceofAlzheimer’sdiseaseshownosignificant
differenceforwomenandmen.(13,16-21)Thus,itappears
thatgenderisnotariskfactorforAlzheimer’sdisease
andotherdementiasonceageistakenintoaccount.
Prevalence 2010 Alzheimer’s Disease Facts and Figures
CreatedfromdatafromPlassmanetal.(12)
20
15
10
5
0
Figure 1: Estimated Percentage of Americans Aged 71+ with Dementia by Gender, ADAMS, 2002
Men Women
Percent
16%
11%
11
Prevalence of Alzheimer’s Disease and Other
Dementias by Years of Education
Peoplewithfeweryearsofeducationappeartobeat
higherriskforAlzheimer’sandotherdementiasthan
thosewithmoreyearsofeducation.Prevalenceand
incidence studies show that having fewer years of
educationisassociatedwithagreaterlikelihoodof
having dementia(12,22)andagreaterriskofdeveloping
dementia.(15-16,19,23-24)
Someresearchersbelievethathavingmoreyearsof
education(comparedwiththosewithfeweryears)
providesa“cognitivereserve”thatenablesindividuals
tocompensateforsymptomsofAlzheimer’sor
anotherdementia.However,othersbelievethatthese
differencesineducationattainmentanddementiarisk
reflectsuchfactorsasincreasedrisksfordiseasein
general and less access to medical care in lower socio-
economicgroups.
Racial and ethnic differences in rates of Alzheimer’s
diseaseandotherdementiashavealsobeenreported
andarediscussedintheSpecialReportattheendof
thisdocument.
Lifetime Risk Estimates for Alzheimer’s Disease
TheoriginalFraminghamStudypopulationwasused
toestimateshort-term(10-year),intermediate(20-and
30-year)andlifetimerisksforAlzheimer’sdisease,
aswellasoverallriskforanydementia.(25),A3In1975,
acohort(group)ofnearly2,800peoplewhowere
65yearsofageandfreeofdementiaprovidedthe
basis for an incidence study of dementia, as well as
Alzheimer’sdisease.Thiscohortwasfollowedforup
to29years.Keyfindingsincludedsignificantlyhigher
lifetimeriskforbothdementiaandAlzheimer’sin
womencomparedwithmen.Morethan20percent
ofwomenreachingage65ultimatelydeveloped
dementia(estimatedlifetimerisk),comparedwith
2010 Alzheimer’s Disease Facts and Figures Prevalence
25
20
15
10
5
0
CreatedfromdatafromSeshadrietal.(25)
Figure 2: Framingham Estimated Lifetime Risks for Alzheimer’s by Age and Sex
Age 65 75 85
Men Women
Percent
9.1%
17.2%
10.2%12.1%
18.5%20.3%
12
approximately17percentofmen.ForAlzheimer’s,
theestimatedlifetimeriskwasnearlyoneinfive
forwomencomparedwithonein10formen.(25)
UnpublisheddatafromtheFraminghamStudyindi-
catedthatatage55,theestimatedlifetimeriskfor
Alzheimer’swas17percentinwomen(approximately
oneinsixwomen),comparedwith9percentinmen
(nearlyonein10men).Theunpublisheddataindicate
thatthelifetimeriskforanydementiainwomenwho
reachedage55was21percent,andformen
14percent.A4
Increasesinshort-andintermediate-termrisksfor
Alzheimer’swereseennotonlyatage65,butalso
weremarkedlyincreasedatages75and85forboth
womenandmen.However,comparedwithwomen,
theriskswerenotashighinmen.Figure2presents
lifetimerisksformenandwomenforAlzheimer’s.
Again,thesedifferencesinlifetimerisksforwomen
comparedwithmenarelargelyduetothelongerlife
expectancyforwomen.
ThedefinitionofAlzheimer’sdiseaseandother
dementiasusedintheFraminghamStudyrequired
documentation of moderate to severe disease as well
assymptomslastingaminimumofsixmonths.When
oneconsidersthenumbersofpeoplewithmildto
moderate levels of dementia, as well as those with
dementiaoflessthansixmonths’duration,thecurrent
andfuturenumbersofpeopleatriskforAlzheimer’s
diseaseandotherdementiasfarexceedthosestated
intheFraminghamStudy.ThenumberofAmericans
with Alzheimer’s and other dementias is increasing
every year because of the steady growth in the older
population.Thisnumberwillcontinuetoincrease
andescalaterapidlyinthecomingyearsasthebaby
boomgenerationages.By2030,thesegmentofthe
U.S.populationaged65yearsandolderisexpected
todouble.Atthattime,theestimated71millionolder
Americanswillmakeupapproximately20percentof
thetotalpopulation.(26)
Longerlifeexpectanciesandagingbabyboomers
willalsoincreasethenumbersandpercentagesof
Americanswhowillbeamongtheoldest-old(85years
andolder).Between2010and2050,theoldestold
areexpectedtoincreasefrom29.5percentofallolder
peopleintheUnitedStatesto35.5percent.Although
thisprojectedchangemayappeartobemodest,
itmeansanincreaseof17millionoldest-old
people—individualswhowillbeathighriskfor
developingAlzheimer’s.(27)
Estimates for the Numbers of People with Alzheimer’s Disease by State
Table2(pages15-16)summarizestheprojectedtotal
numberofpeopleaged65andolderwithAlzheimer’s
diseasebystatefortheyears2000,2010and2025.
ThepercentagechangesinAlzheimer’sbetween
2000and2010,andbetween2000and2025arealso
shown.Comparableprojectionsfordementiaare
notavailable.
Notonlyistheresubstantialvariabilitybystateinthe
projectednumbersofpeoplewithAlzheimer’s,butthis
variabilityisalsoreflectedamongdifferentregionsof
thecountry.Thebulkofthedifferenceisclearlydue
towherethe65-and-olderpopulationresideswithin
theUnitedStates.However,between2000and2025,
it also is clear that some states and regions across
thecountryareexpectedtoexperiencedouble-digit
percentageincreasesintheoverallnumbersofpeople
withAlzheimer’s.Comparedwiththenumbersof
peoplewithAlzheimer’sestimatedfor2000,the
South,MidwestandWestareexpectedtoexperi-
enceincreasesthatwillresultin30-to50-percent
(andgreater)increasesoverthe25-yearperiod.Some
statesintheWest(Alaska,Colorado,Idaho,Nevada,
UtahandWyoming)areprojectedtoexperiencea
doubling(ormore)oftheirpopulationsaged65and
olderwithAlzheimer’s.
Prevalence 2010 Alzheimer’s Disease Facts and Figures
13
Figure 3: Projected Changes Between 2000 and 2025 in Alzheimer Prevalence by State
81.1%–127.0% 49.1%–81.0% 31.1%–49.0% 24.1%–31.0% 0–24.0%
CreatedfromdatafromHebertetal.(28),A5
TheincreasednumbersofpeoplewithAlzheimer’swill
haveamarkedimpactonstates’healthcaresystems,
nottomentionfamiliesandcaregivers.Althoughthe
projectedincreasesintheNortheastarenotnearlyas
markedasthoseinotherregionsoftheUnitedStates,
it should be noted that this section of the country
currentlyhasalargeproportionofpeopleaged65and
olderwithAlzheimer’s.
Figure3summarizeshowtheprevalenceof
Alzheimer’sinAmericansaged65andolderis
expectedtochangebystatebetween2000and
2025.Ofparticularnotearethestatesanticipated
toexperiencegrowthexceeding80percent.
2010 Alzheimer’s Disease Facts and Figures Prevalence
14
Causes of Dementia
Although Alzheimer’s disease is the most common
form of dementia, data are emerging to suggest that
theattributionofdementiatospecifictypesmaynot
beasclearcutaspreviouslybelieved.(29) A study by
Schneiderandcolleaguesreportsthatmostolder
community-dwellingpeople(meanageatdeath,
approximately88years)havechangesinthebrain
suggestiveofdisease.Peoplewithdementiaoften
haveevidenceofmultipletypesofbraindisease.(30)
Ofthefirst141autopsiesinthisstudy,80examined
braintissuesamplesfrompeoplewithintermediate
orhighlikelihoodofhavingAlzheimer’sbasedon
clinical evaluation, which included medical history,
neuropsychologicaltestsandphysicalexamination
withanemphasisonneurologicfunction.Less
thanhalfofthe80autopsiesshowedevidenceof
Alzheimer’salone.Nearlyathirdshowedevidence
ofAlzheimer’sandinfarcts;15percentshowed
evidenceofAlzheimer’sandParkinson’sdisease/Lewy
bodydisease;5percentshowedevidenceofallthree
diseases;and2.5percentshowedevidenceof
Alzheimer’s and a brain disease other than infarcts
orParkinson’sdisease/Lewybodydisease.Although
50percentofparticipantswithlittleornolikelihood
of having Alzheimer’s disease based on clinical
evaluation also had no evidence of dementia on
autopsy,approximatelyone-thirdshowedsignsof
braininfarcts.Thus,thereisreasontobelievethatthe
causesofdementiamaybemuchmorecomplicated
thanoriginallybelieved.
Looking to the Future
ThenumberofAmericanssurvivingintotheir80sand
90sandbeyondisexpectedtogrowdramaticallydue
to advances in medicine and medical technology, as
wellassocialandenvironmentalconditions.Sincethe
incidenceandprevalenceofAlzheimer’sdiseaseand
other dementias increase with age, the number of
peoplewiththeseconditionswillalsogrowrapidly.
• In2000,therewereanestimated411,000new
(incident)casesofAlzheimer’sdisease.For2010,
thatnumberisprojectedtobe454,000newcases;
by2030,615,000;andby2050,959,000.(31)
•Thisyear,morethananestimated5.5million
Americansare85yearsandolder;by2050,that
numberwillnearlyquadrupleto19million.
•WhilethenumberofAmericansaged100yearsand
olderisestimatedat80,000in2010,by2050there
will be more than a half million Americans aged
100yearsandolder.
•The85-years-and-olderpopulationcurrentlyincludes
about2.4millionpeoplewithAlzheimer’sdisease,
or47percentoftheAlzheimerpopulationaged65
andover.Whenthefirstwaveofbabyboomers
reachesage85years(2031),anestimated
3.5millionpeopleaged85andolderwillhave
Alzheimer’s.(10)
• Thenumberofpeopleaged65andolderwith
Alzheimer’sdiseaseisestimatedtoreach7.7million
in2030—morethana50percentincreasefromthe
5.1millionaged65andoldercurrentlyaffected.(10)
•By2050,thenumberofindividualsaged65and
olderwithAlzheimer’sisprojectedtonumber
between11millionand16million—unlessmedical
breakthroughsidentifywaystopreventormore
effectivelytreatthedisease. Barringsuchdevelop-
ments,by2050morethan60percentofpeoplewith
Alzheimer’sdiseasewillbeaged85orolder.(10)
Prevalence 2010 Alzheimer’s Disease Facts and Figures
15
Table 2: Projections by State for Total Numbers of Americans Aged 65 and Older with Alzheimer’s
State 2000 2010 2025 2010 2025
Alabama 84.0 91.0 110.0 8 31
Alaska 3.4 5.0 7.7 47 126
Arizona 78.0 97.0 130.0 24 67
Arkansas 56.0 60.0 76.0 7 36
California 440.0 480.0 660.0 9 50
Colorado 49.0 72.0 110.0 47 124
Connecticut 68.0 70.0 76.0 3 12
Delaware 12.0 14.0 16.0 17 33
DistrictofColumbia 10.0 9.1 10.0 -9 0
Florida 360.0 450.0 590.0 25 64
Georgia 110.0 120.0 160.0 9 45
Hawaii 23.0 27.0 34.0 17 48
Idaho 19.0 26.0 38.0 37 100
Illinois 210.0 210.0 240.0 0 14
Indiana 100.0 120.0 130.0 20 30
Iowa 65.0 69.0 77.0 6 18
Kansas 50.0 53.0 62.0 6 24
Kentucky 74.0 80.0 97.0 8 31
Louisiana 73.0 83.0 100.0 14 37
Maine 25.0 25.0 28.0 0 12
Maryland 78.0 86.0 100.0 10 28
Massachusetts 120.0 120.0 140.0 0 17
Michigan 170.0 180.0 190.0 6 12
Minnesota 88.0 94.0 110.0 7 25
Mississippi 51.0 53.0 65.0 4 27
Missouri 110.0 110.0 130.0 0 18
Montana 16.0 21.0 29.0 31 81
Nebraska 33.0 37.0 44.0 12 33
Nevada 21.0 29.0 42.0 38 100
NewHampshire 19.0 22.0 26.0 16 37
NewJersey 150.0 150.0 170.0 0 13
Percentage Change in Alzheimer’s
(Compared to 2000)
Projected Total Numbers (in 1,000s)
with Alzheimer’s
2010 Alzheimer’s Disease Facts and Figures Prevalence
State 2000 2010 2025 2010 2025
NewMexico 27.0 31.0 43.0 15 59
NewYork 330.0 320.0 350.0 -3 6
NorthCarolina 130.0 170.0 210.0 31 62
NorthDakota 16.0 18.0 20.0 13 25
Ohio 200.0 230.0 250.0 15 25
Oklahoma 62.0 74.0 96.0 19 55
Oregon 57.0 76.0 110.0 33 93
Pennsylvania 280.0 280.0 280.0 0 0
RhodeIsland 24.0 24.0 24.0 0 0
SouthCarolina 67.0 80.0 100.0 19 49
SouthDakota 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
Utah 22.0 32.0 50.0 45 127
Vermont 10.0 11.0 13.0 10 30
Virginia 100.0 130.0 160.0 30 60
Washington 83.0 110.0 150.0 33 81
WestVirginia 40.0 44.0 50.0 10 25
Wisconsin 100.0 110.0 130.0 10 30
Wyoming 7.0 10.0 15.0 43 114
Percentage Change in Alzheimer’s
(Compared to 2000)
Table 2 (Continued): Projections by State for Total Numbers of Americans Aged 65 and Older with Alzheimer’s
Projected Total Numbers (in 1,000s)
with Alzheimer’s
16 Prevalence 2010 Alzheimer’s Disease Facts and Figures
CreatedfromdatafromHebertetal.(28),A5
17
Alzheimer’s disease was the seventh-leading cause of death across all ages in the United States in 2006. It was the fifth-leading cause of death for those aged 65 and older.(32)
3 Mortality
18
Infinaldatafor2006,(33)Alzheimer’swasreportedas
theunderlyingcauseofdeathfor72,432people.Of
note are the nearly identical numbers of deaths for
thoseattributedtodiabetes(thesixth-leadingcauseof
death)andAlzheimer’sdisease.Infact,only17deaths
separatedthesixthandseventhrankings.
TheunderreportingofAlzheimer’sdiseaseasan
underlying cause of death has been well documented,
and it occurs in both local communities and in nursing
homes.(34-37) Death rates from the disease can vary a
great deal across states and result from differences
instatedemographicsandreportingpractices.Death
ratesamongpeoplewithAlzheimer’sdiseasedramati-
callyincreasewithage.Fromonecommunity-based,
15-yearprospectivestudy,themortalityrateforpeople
aged75–84withAlzheimer’swasnearly2.5times
greaterthanforthoseaged55–74withthedisease.
Atage85andolder,theratewasnearlytwicethat
ofthosewithAlzheimer’saged75–84.(38)Two-thirds
of those dying of dementia did so in nursing homes,
comparedwith20percentofcancerpatientsand
28percentofpeopledyingfromallotherconditions.
Deaths from Alzheimer’s Disease
Whileothermajorcausesofdeathcontinuetoexperience
significantdeclines,thosefromAlzheimer’sdiseasehave
continuedtorise.In1991,only14,112deathcertificates
recordedAlzheimer’sdiseaseastheunderlyingcause.(39)
Comparingchangesinselectedcausesofdeathbetween
finaldatafor2000andfinaldatafor2006(Figure4),
deaths attributed to Alzheimer’s disease increased
46.1percent,whilethoseattributedtothenumberone
causeofdeath,heartdisease,decreased11.1percent.
Patternsofreportingdeathsondeathcertificateschange
substantially over time, however, for Alzheimer’s and for
othercausesofdeath.Alzheimer’sisamajorcauseof
death and is clearly becoming a more common cause
asthepopulationsoftheUnitedStatesandother
countriesage.Theincreaseinthenumberandpropor-
tionofdeathcertificateslistingAlzheimer’smaystrongly
reflectbothchangesinpatternsofreportingdeathson
deathcertificatesaswellasanincreaseintheactual
numberofdeathsattributabletoAlzheimer’s.
PeoplewithadiagnosisofAlzheimer’sdiseasehave
anincreasedriskofdeath.Onestudyfoundthat
peopleaged60andolderwithdiagnosedAlzheimer’s
diseasesurvivedanaverageoffourtosixyearsafter
thediagnosis.(40)Howdementialeadstodeathmay
createambiguityabouttheunderlyingcauseofdeath.
Severedementiafrequentlycausessuchcomplications
asimmobility,swallowingdisordersandmalnutrition.
Thesecomplicationscansignificantlyincreasetheriskof
developingpneumonia,whichhasbeenfoundinseveral
studiestobethemostcommonlyidentifiedcauseof
deathamongelderlypeoplewithAlzheimer’sdiseaseand
otherdementias.Oneresearcherdescribedthesituation
as a “blurred distinction between death with dementia
and death from dementia.”(38)
Mortality 2010 Alzheimer’s Disease Facts and Figures
19
State-by-State Deaths from Alzheimer’s Disease
Table3(page20)providesinformationonthenumber
of deaths due to Alzheimer’s by state and overall in
theUnitedStates.Theinformationwasobtainedfrom
deathcertificatesandreflectstheunderlyingcauseof
death: “the disease or injury which initiated the train
ofeventsleadingdirectlytodeath.”(33)The table also
providesage-adjustedratesbystate.Ageadjustment
shouldnotbeviewedasprovidingameasurement
ofactualrisk,butshouldbeviewedasprovidingan
indicationofrelativeriskbetweenthestates.Thus
intermsofrelativecomparisons,thehighestage-
adjusted rates for deaths due to Alzheimer’s occurred
insouthernstates(Alabama,Louisiana,SouthCarolina
andTennessee),withtheexceptionsofArizona,North
DakotaandWashington.Theage-adjustedratefor
Floridawouldsuggest,onthesurface,thattherisk
of mortality from Alzheimer’s is more modest in that
statecomparedwithothers.Floridaishometoalarge
numberofpeopleaged65yearsandolder,andthis
istheagegroupathighestriskforAlzheimer’sand
Alzheimer-relateddeath.However,itmaybethatthe
largenumberofactive,healthyretireesaged65and
olderinthatstatehelpmoderateFlorida’soverallage-
adjustedAlzheimerrisk.
PercentageChange -30 -20 -10 0 10 20 30 40 50
Figure 4: Percentage Changes in Selected Causes of Death Between 2000a and 2006b
Alzheimer’s Disease
Stroke
ProstateCancer
BreastCancer
HeartDisease
HIV
aNationalCenterforHealthStatistics.Deaths: Final Data for 2000.(41)
bHeronetal.(33)
2010 Alzheimer’s Disease Facts and Figures Mortality
Cau
ses
of
Dea
th
-18.2%
+46.1%
-11.1%
-16.3%
-8.7%
-2.6%
20
Table 3: Number of Deaths Due to Alzheimer’s and Age-Adjusted Rates* (per 100,000), by State, 2006
Number of Age-Adjusted State Deaths Rate per 100,000
Number of Age-Adjusted State Deaths Rate per 100,000
Alabama 1,497 30.3
Alaska 73 24.7
Arizona 2,066 31.4
Arkansas 783 23.9
California 8,146 24.1
Colorado 1,058 27.7
Connecticut 728 16.2
Delaware 189 20.4
DistrictofColumbia 117 18.3
Florida 4,689 17.0
Georgia 1,820 25.7
Hawaii 201 12.2
Idaho 400 28.1
Illinois 2,794 20.6
Indiana 1,696 25.2
Iowa 1,121 26.3
Kansas 830 24.3
Kentucky 1,153 26.7
Louisiana 1,282 30.5
Maine 477 29.0
Maryland 915 17.1
Massachusetts 1,560 19.4
Michigan 2,331 21.7
Minnesota 1,299 22.2
Mississippi 744 25.0
Missouri 1,632 24.1
Montana 226 19.6
Nebraska 500 22.6
Nevada 281 14.7
NewHampshire 372 26.5
NewJersey 1,649 16.5
NewMexico 348 17.7
NewYork 2,021 9.1
NorthCarolina 2,265 26.4
NorthDakota 318 33.6
Ohio 3,565 27.0
Oklahoma 928 23.5
Oregon 1,231 29.0
Pennsylvania 3,311 18.9
RhodeIsland 297 20.3
SouthCarolina 1,364 31.5
SouthDakota 329 29.8
Tennessee 2,115 34.6
Texas 4,887 25.9
Utah 390 21.4
Vermont 186 26.2
Virginia 1,574 22.3
Washington 2,470 38.3
WestVirginia 496 21.8
Wisconsin 1,596 24.2
Wyoming 112 21.8
U.S. Total 72,432 22.6
*Age-adjustedtoyear2000standardpopulation.
CreatedfromdatafromHeronetal.(33)
Mortality 2010 Alzheimer’s Disease Facts and Figures
21
Death Rates by Age
Although Alzheimer’s disease and death from
Alzheimer’scanoccurinpeopleunderage65,the
highestriskisintheelderyears.AsseeninTable4,
death rates for Alzheimer’s increase dramatically
betweentheelderlyagegroupsof65–74,75–84and
85andolder.Toputsuchage-relateddifferencesinto
perspective,forU.S.deathsin2006,thedifferencesin
total mortality rates from all causes of death for those
aged65–74andthoseaged75–84was2.5-fold,and
betweenthe75–84agegroupandthe85andolder
agegroup,2.6-fold.Fordiseasesoftheheart,the
differenceswere2.8-foldand3.2-fold,respectively.
Forallcancers,thedifferenceswere1.7-foldand
1.3-foldrespectively.Thecorrespondingdifferences
forAlzheimer’swere8.7-foldand4.8-fold.Thislarge
increase in death rates due to Alzheimer’s among
America’soldestagegroupsunderscorestheimpact
of having neither a cure for Alzheimer’s nor highly
effectivetreatments.(33)
Age 2000 2004 2006
45–54 0.2 0.2 0.2
55–64 2.0 1.9 2.1
65–74 18.7 19.7 20.2
75–84 139.6 168.7 175.6
85+ 667.7 818.8 848.3
Table 4: U.S. Alzheimer Death Rates (per 100,000) by Age, 2000, 2004 and 2006
CreatedfromdatafromHeronetal.(33)
2010 Alzheimer’s Disease Facts and Figures Mortality
22
In 2011, the first baby boomers will reach their 65th birthdays. By 2029, all baby boomers will be at least 65 years old. This group, totaling an estimated 70 million people aged 65 and older, will have a significant impact on the U.S. healthcare system.
Caregiving 4
23
Paid Caregiving
OlderAmericansrepresentapproximately12percent
ofthepopulation.However,theycomprise26percent
ofphysicianofficevisits,approximatelyathirdofall
hospitalstays,athirdofallprescriptions,nearly
40percentofallemergencymedicalresponsesand
90percentofnursinghomeresidents,accordingtothe
NationalAcademyofSciences.(42) Alzheimer’s disease
willclearlyrequireasignificantportionoffuture
healthcareworkforce.
Initsexecutivesummary,theNationalAcademyof
Sciencesstatesthatanestimated3.5millionadditional
formallytrainedhealthcareproviderswillbeneededby
2030—morethanaone-thirdincreaseinthecurrent
ratioofproviderstothetotalpopulation—justto
maintaincurrentlevelsofstaffing.Theexecutive
summary also documents that the vast majority of
healthcareworkerswhoprovidethebulkofservices
totheelderlydonothavetrainingingeriatrics.
Currently,lessthan1percentofphysicianassistants
specializeingeriatrics.Asimilarpercentageof
pharmacistsandregisterednursesarecertifiedin
geriatrics.It’sestimatedthatonlyabout4percentof
socialworkers—33percentofwhat’sneeded—
specializeingeriatrics.
Asof2007,thenumberofphysicianscertifiedin
geriatricmedicinetotaled7,128;thosecertifiedingeri-
atricpsychiatryequaled1,596.(42)By2030,theneed
forgeriatriciansisestimatedtonumberapproximately
36,000.(42)Somehaveestimatedthattheincrease
fromcurrentlevelswillamounttolessthan10percent,
whileothersbelievetherewillbeanetlossofphysi-
ciansforgeriatricpatients.(42)
Thus,significantformalhealthcarestaffingneedsare
anticipatedtobeunmetorunderservedasAmerica
approachesunparalleleddemandsfortheseservices
initselderlypopulationgroups.Itshouldbenotedthat
theNationalAcademyofSciencesreportonlyprovides
asnapshotofthehealthworkerneedsandtheshort-
agesthereofimpactingpeoplewithAlzheimer’sand
otherdementiasandtheirfamilies.Increasedstaffing
tomeettheneedsofthedementiapopulationmust
include not only increased numbers of staff, but also
specificdementia-caretrainingofphysicians,nurses,
socialworkersandotherhealthcareprovidersworking
inthesesettings.
Family Caregiving
Almost11millionAmericansprovideunpaidcare
forapersonwithAlzheimer’sdiseaseoranother
dementia.A6Theseunpaidcaregiversareprimarily
familymembersbutalsoincludefriends.In2009,they
provided12.5billionhoursofunpaidcare,acontribu-
tiontothenationvaluedatalmost$144billion.
CaringforapersonwithAlzheimer’soranother
dementiaisoftenverydifficult,andmanyfamilyand
otherunpaidcaregiversexperiencehighlevelsof
emotionalstressanddepressionasaresult.Caregiving
alsohasanegativeimpactonthehealth,employment,
incomeandfinancialsecurityofmanycaregivers.
Number of Caregivers
In2009,anestimated10.9millionfamilymembers
andfriendsprovidedunpaidcareforapersonwith
Alzheimer’sdiseaseoranotherdementia.A6Table5
(pages31-32)showsthenumberoffamilyandother
unpaidcaregiversintheUnitedStatesandeachstate.
The number of caregivers by state ranges from about
16,000inAlaskato1.2millioninCalifornia.
SomepeoplewithAlzheimer’sandotherdementias
havemorethanoneunpaidcaregiver,forexample,
peoplewholivewiththeirprimarycaregiverand
receivehelpfromanotherrelativeorfriend.(43)
Caregivers’ Perception of the Person’s Main Health Problem
ManypeoplewithAlzheimer’soranotherdementia
also have other serious medical conditions, such as
heartdisease,diabetesandcancer(Table8,page37).
Theirfamilyandotherunpaidcaregiversoftenhelpto
manage these medical conditions in addition to the
Alzheimer’sorotherdementia.
2010 Alzheimer’s Disease Facts and Figures Caregiving
24
In2009,almostone-half(49percent)ofunpaidcaregivers
ofpeoplewithAlzheimer’sandotherdementiassaidthe
person’sAlzheimer’sorotherdementiawashisorher
mainhealthproblem.(43)Thisproportionhasincreased
significantlysince2003,whenonly31percentofcare-
giversofpeoplewithAlzheimer’sandotherdementias
saidthattheperson’sAlzheimer’sorotherdementia
washisorhermainhealthproblem(Figure5).(43-44) The
reasonsforthisincreasearenotknownbutcouldinclude
growing awareness of Alzheimer’s and dementia as well
as greater willingness of caregivers to name Alzheimer’s
ordementiaasthemainhealthproblemofthepersonfor
whomtheyprovidecare.
Fourstates—Florida,Minnesota,NorthCarolina
andWashington—haveconductedsurveysthatask
caregiversofalltypeswhetherthepersonforwhom
theyprovidecarehasAlzheimer’soranotherdementia
and whether Alzheimer’s or another dementia is that
person’smainhealthproblem.Thesurveyresults
showthatonly14percentofFloridacaregiversof
peoplewithAlzheimer’sandotherdementiassay
thatAlzheimer’sordementiaistheperson’smain
healthproblem,(45)comparedwith21percentof
Minnesota caregivers,(46)29percentofNorthCarolina
caregivers(47)and36percentofWashingtonState
caregivers.(48)Thesepercentagescouldreflecttrue
differencesinthemainhealthproblemofpeoplewith
Alzheimer’s and other dementias in these states,
differences by state in the willingness of caregivers to
nameAlzheimer’sordementiaastheperson’smain
healthproblem,orotherfactors.Comparabledataare
notavailableforotherstates.
Hours of Unpaid Care
In2009,the10.9millionfamilyandotherunpaid
caregiversofpeoplewithAlzheimer’sandother
dementiasprovidedanestimated12.5billionhoursof
care.Thisnumberrepresentsanaverageof21.9hours
ofcarepercaregiverperweek,or1,139hoursofcare
percaregiverperyear.A7Table5(pages31-32)shows
thetotalhoursofunpaidcareprovidedfortheUnited
Statesandeachstate.Eveninasmallstatesuchas
RhodeIsland,caregiversofpeoplewithAlzheimer’s
andotherdementiasprovided44.6millionhoursof
unpaidcarein2009.
CaregiversofpeoplewithAlzheimer’sandother
dementiasprovidemorehoursofhelp,onaverage,
thancaregiversofotherolderpeople.Thenumberof
hoursvariesinfindingsfromdifferentstudies.The
2009NationalAllianceforCaregiving(NAC)/AARP
surveyoncaregivingintheUnitedStatesfoundthat
15percentofcaregiversofpeoplewithAlzheimer’s
andotherdementiasprovidedmorethan40hoursof
careaweek,comparedwith10percentofcaregivers
ofotherolderpeople.(43) Another study found that
40percentofcaregiverswhowerecaringforpeople
Caregiving 2010 Alzheimer’s Disease Facts and Figures
Createdfromdatafromthe2009NationalAllianceforCaregiving/AARPsurveyoncaregivingintheUnitedStates,preparedundercontractfor theAlzheimer’sAssociationbyMatthewGreenwaldandAssociates, Nov.11,2009.(43)
60
50
40
30
20
10
0
Figure 5: Proportion of Persons with Alzheimer’s Disease or Other Dementia Whose Caregivers Say Alzheimer’s Disease or Other Dementia is the Person’s Main Health Problem, United States, 2003 and 2009
Mainhealthproblem2003
Mainhealthproblem2009
Percent
49%
31%
25
withAlzheimer’sandotherdementiasprovided
morethan40hoursaweekofhelp,compared
with28percentofthosewhowerecaringforother
olderpeople.(49)
Theaveragenumberofhoursofunpaidcareprovided
forpeoplewithAlzheimer’sandotherdementias
increasesastheperson’sdiseaseworsens.(50) The
numberofhoursofunpaidcareisalsogreater,on
average,forpeoplewithcoexistingmedicalconditions
inadditiontoAlzheimer’soranotherdementia.(50)
Somefamilyandotherunpaidcaregiverswholive
withapersonwhohasAlzheimer’sorotherdementia
providesupervisionandhelp24hoursaday,7daysa
week,gettingupwiththepersonatnightandassisting
withalldailyactivities.(43,51-52)Sucharound-the-clock
careisneededwhenthepersoncannotbeleftalone
becauseofriskofwandering,gettinglostandother
unsafeactivities.
Economic Value of Caregiving
In2009,theestimatedeconomicvalueofthecare
providedbyfamilyandotherunpaidcaregiversof
peoplewithAlzheimer’sandotherdementiaswas
$144billion.Thisnumberrepresents12.5billionhours
ofcarevaluedat$11.50perhour.A8Table5showsthe
valueofthecareprovidedbyfamilyandotherunpaid
caregiversfortheUnitedStatesandeachstate.
UnpaidcaregiversofpeoplewithAlzheimer’sand
otherdementiasprovidedcarevaluedatmorethan
$1billionineachof36states.Unpaidcaregiversin
eachofninestates—California,Florida,Georgia,
Illinois,Michigan,NewYork,Ohio,Pennsylvaniaand
Texas—providedcarevaluedatmorethan$5billion.
Who are the Caregivers?
About60percentoffamilyandotherunpaidcaregivers
ofpeoplewithAlzheimer’sdiseaseandotherdemen-
tiasarewomen.(43,49)The2009NAC/AARPsurveyon
caregivingintheUnitedStatesfoundthat94percent
ofcaregiversofpeoplewithAlzheimer’sandother
dementiasweretakingcareofarelative,includinga
parentorparent-in-law(62percent),agrandparent
(17percent),aspouse(6percent)oranotherrelative
(9percent).Theremaining6percentofcaregivers
weretakingcareofafriend.(43)
The2009NAC/AARPsurveyalsofoundthat
21percentofcaregiversofpeoplewithAlzheimer’s
and other dementias lived in the same household as
thepersonforwhomtheywereprovidingcare.(43)
Thisproportionvariesindifferentstudies,however,
dependingonhowcaregiverswererecruitedforthe
study.Anotherstudyfoundthattwo-thirdsofcare-
giversofpeoplewithAlzheimer’sandotherdementias
livedinthesamehouseholdasthepersonforwhom
theywereprovidingcare.(49)
Caregiversrangeinagefromveryyoungtoveryold.
The2009NAC/AARPsurveyfoundthat14percent
ofcaregiversofpeoplewithAlzheimer’sandother
dementiaswereunderage35;26percentwereaged
35–49;46percentwereaged50–64;and13percent
wereaged65andover(Figure6).(43) Their average age
was51.
2010 Alzheimer’s Disease Facts and Figures Caregiving
Createdfromdatafromthe2009NationalAllianceforCaregiving/AARPsurveyoncaregivingintheUnitedStates,preparedundercontractfor theAlzheimer’sAssociationbyMatthewGreenwaldandAssociates, Nov.11,2009.(43)
50
40
30
20
10
0
Figure 6: Ages of Alzheimer’s and Other Dementia Caregivers, 2009
Percent
Age Under35 35–49 50–64 65+
14%
26%
46%
13%
26
Inaddition,a2003surveyfoundthatabout250,000
Americanchildrenaged8–18wereunpaidcaregivers
forapersonwithAlzheimer’soranotherdementia.(53)
Thesechildrenrepresent18percentofthe1.4million
Americanchildrenaged8–18whoprovidedunpaid
helpforanyperson.
“Sandwich Generation” Caregivers
SomecaregiversofpeoplewithAlzheimer’sandother
dementiasalsohavechildrenlivingathome.The2009
NAC/AARPsurveyoncaregivingintheUnitedStates
foundthat30percentoffamilyandotherunpaidcare-
giversofpeoplewithAlzheimer’sandotherdementias
hadchildrenorgrandchildrenunderage18livingat
home.(43)Anotherstudyfoundthat17percentofcare-
giversofpeoplewithAlzheimer’sandotherdementias
hadchildrenlivingathome.(49)
Statesurveysoffamilycaregiversshowvariable
estimatesforindividualswithchildrenlivingathome.
SurveysconductedinFloridaandMinnesotain2008
foundthataboutone-thirdofcaregiversofpeoplewith
Alzheimer’s or other dementia had children under age
18livingathome.(45-46) A 2007 survey conducted in
WashingtonStatefoundthat27percentofcaregivers
ofpeoplewithAlzheimer’sandotherdementiashad
childrenunderage18livingathome,including
12percentwithonechildand15percentwithtwo
ormorechildren.(48)
Long-Distance Caregivers
Ninepercentofthe10.9millionfamilyandother
unpaidcaregiversofpeoplewithAlzheimer’sandother
dementiaslivemorethantwohoursfromtheperson
forwhomtheyprovidecare,andanother6percentlive
onetotwohoursaway.(43)Dependingonthedefinition
of“long-distancecaregiving,”thesenumbersindicate
that981,000to1.6millioncaregiversofpeoplewith
Alzheimer’sandotherdementiasare“long-distance
caregivers.”
Caregiving Tasks
Thekindsofhelpprovidedbyfamilyandotherunpaid
caregiversdependontheneedsofthepersonwith
Alzheimer’s or other dementia and change as the
diseaseworsens.Caregivingtaskscaninclude:(43,49)
•Shoppingforgroceries,preparingmealsandproviding
transportation;
•Helpingthepersontakemedicationscorrectlyand
follow treatment recommendations for his or her
dementiaandothermedicalconditions;
•Managingfinancesandlegalaffairs;
•Supervisingthepersontoavoidsuchunsafeactivities
aswanderingandgettinglost;
•Bathing,dressing,feedingandhelpingthepersonuse
thetoiletormanagingincontinence;
•Makingarrangementsformedicalcareandpaid
in-home,assistedlivingornursinghomecare;and
•Managingbehavioralsymptoms.
Familyandotherunpaidcaregiversofpeoplewith
Alzheimer’sandotherdementiasaremorelikelythan
caregiversofotherolderpeopletoassistwithactivi-
tiesofdailyliving(ADLs).Findingsfromthe2009NAC/
AARPsurveyoncaregivingintheUnitedStatesshow
that38percentofcaregiversofpeoplewithAlzheimer’s
and other dementias were assisting with three or more
ADLs,comparedwith27percentofcaregiversofother
olderpeople.(43)AsshowninFigure7,31percentof
Alzheimer and dementia caregivers manage inconti-
nenceanddiaperscomparedwith16percentofother
caregivers.Likewise,31percentofAlzheimerand
dementiacaregivershandlefeedingcomparedwith
14percentofothercaregivers.(43)
In addition to activities of daily living, caregivers of
peoplewithAlzheimer’sandotherdementiasaremore
likelythancaregiversofotherolderpeopletoarrange
andsuperviseservicesfromanagency(46percent
Caregiving 2010 Alzheimer’s Disease Facts and Figures
27
versus33percent,respectively).(43)Caregiversof
peoplewithAlzheimer’sandotherdementiasarealso
morelikelytoadvocateforthepersonwithgovern-
mentagenciesandserviceproviders(64percent
ofcaregiversofpeoplewithAlzheimer’sandother
dementiasversus50percentofcaregiversofother
olderpeople.)
WhenapersonwithAlzheimer’soranotherdementia
moves to an assisted living facility or nursing home, the
kindsofhelpprovidedbyhisorherfamilyandother
unpaidcaregiversusuallychange,butmanycare-
giverscontinuetoassistwithfinancialandlegalaffairs
andarrangementsformedicalcareandtoprovide
emotionalsupport.Somealsocontinuetohelpwith
bathing,dressingandotheractivitiesofdailyliving.(54-56)
Duration of Caregiving
BecauseAlzheimer’sandotherdementiasusually
progressslowly,mostcaregiversspendmanyyears
inthecaregivingrole.Atanypointintime,32percent
offamilyandotherunpaidcaregiversofpeoplewith
Alzheimer’sandotherdementiashavebeenproviding
helpforfiveyearsorlonger,including12percentwho
havebeenprovidingcarefor10yearsorlonger.An
additional43percenthavebeenprovidingcareforone
tofouryears,and23percenthaveprovidedcarefor
lessthanayear.(43)Caregiversofotherolderpeopleare
lesslikelytohaveprovidedcarefor1–4years
(33percent)andfiveormoreyears(28percent),and
morelikelytohaveprovidedcareforlessthanoneyear
(34percent)(Figure8,page28).
Figure 7: Proportion of Caregivers of People with Alzheimer’s or Other Dementia vs. Caregivers of Other Older People Who Provide Help with Specific Activities of Daily Living, United States, 2009
CaregiversofpeoplewithAlzheimer’sandotherdementiasCaregiversofotherolderpeople
Gettinginand Dressing Gettingtoand Bathing Managing Feeding out of bed from the toilet incontinence anddiapers
60
50
40
30
20
10
0
Percent
Createdfromdatafromthe2009NationalAllianceforCaregiving/AARPsurveyoncaregivingintheUnitedStates,preparedundercontractfortheAlzheimer’sAssociationbyMatthewGreenwaldandAssociates,Nov.11,2009.(43)
2010 Alzheimer’s Disease Facts and Figures Caregiving
54%
42%40%
31% 32%
26%
31%
23%
31%
16%
31%
14%
28
Impact of Caregiving
CaringforapersonwithAlzheimer’soranother
dementiaposesspecialchallenges.Althoughmemory
lossisthebest-knownsymptom,thesediseasesalso
cause loss of judgment, orientation, and the ability to
understandandcommunicateeffectively.Personality
andbehaviorareaffectedaswell.Individualsrequire
increasinglevelsofsupervisionandpersonalcare,and
manycaregiversexperiencehighlevelsofstressand
negativeeffectsontheirhealth,employment,income
andfinancialsecurity.
Impact on the Caregiver’s Emotional Well-Being
Mostfamilyandotherunpaidcaregiversareproudof
thehelptheyprovide, andmosthavepositivefeelings
aboutcaregiving.(57-58)Yetmanycaregiversalsoexperi-
encehighlevelsofstressanddepressionassociated
withcaregiving.
•Morethan40percentoffamilyandotherunpaidcare-
giversofpeoplewithAlzheimer’sandotherdemen-
tias rate the emotional stress of caregiving as high or
veryhigh,comparedwith28percentofcaregiversof
otherolderpeople(Figure9).(43)
•Aboutone-thirdoffamilycaregiversofpeoplewith
Alzheimer’sandotherdementiashavesymptomsof
depression.(59-60)
•Onestudyoffamilycareprovidedforpeoplewith
dementiaintheyearbeforetheperson’sdeathfound
thathalfthecaregiversspentatleast46hoursa
weekassistingtheperson;59percentfeltthatthey
were“onduty”24hoursaday;andmanyfeltthat
caregivinginthisend-of-lifeperiodwasextremely
stressful. The stress of caregiving was so great that
72percentofthefamilycaregiverssaidtheyexperi-
encedreliefwhenthepersondied.(52)
Caregiving 2010 Alzheimer’s Disease Facts and Figures
Figure 8: Proportion of Alzheimer and Dementia Caregivers vs. Caregivers of Other Older People by Duration of Caregiving, United States, 2009
CaregiversofpeoplewithAlzheimer’sandotherdementiasCaregiversofotherolderpeople
50
45
40
35
30
25
20
15
10
5
0
Percent
Createdfromdatafromthe2009NationalAllianceforCaregiving/AARPsurveyoncaregivingintheUnitedStates,preparedundercontractfortheAlzheimer’sAssociationbyMatthewGreenwaldandAssociates,Nov.11,2009.(43)
5+years 1–4years lessthan1year Occasionally
32%28%
43%
33%
23%
34%
4%2%
29
•Caregiverstress,especiallystressrelatedtothe
person’sbehavioralsymptoms,isassociatedwith
nursinghomeplacement.(61-62)Still,manyfamilycare-
giverscontinuetoexperiencehighstressevenwhen
thepersonislivinginanursinghome.(54,56,63)
Impact on the Caregiver’s Health
ManycaregiversofpeoplewithAlzheimer’sandother
dementiasexperiencenegativehealthoutcomesasso-
ciatedwithcaregiving.
•Familyandotherunpaidcaregiversofpeoplewith
Alzheimer’sandotherdementiasaremorelikelythan
non-caregiverstoreportthattheirhealthisfairor
poor.(64-65)Theyarealsomorelikelythanunpaidcare-
giversofotherolderpeopletosaythatcaregiving
madetheirhealthworse.(43,49)
•Familyandotherunpaidcaregiversofpeoplewith
Alzheimer’soranotherdementiaaremorelikely
thannon-caregiverstohavehighlevelsofstress
hormones,(66-68) reduced immune function,(66,69) slow
wound healing,(70)newhypertension(71) and new
coronaryheartdisease.(72)
•Onestudyofspousecaregiversofpeoplewith
Alzheimer’s or another dementia found that
24percentofthecaregivershadanemergency
departmentvisitorhospitalizationintheprevious
sixmonths;caregiverswhoweremoredepressed
andthosewhoweretakingcareofindividualswho
neededgreaterhelpwithdailyactivitiesandhad
morebehavioralsymptomsweremorelikelytohave
anemergencydepartmentvisitorhospitalization.(73)
•Onestudyofspousecaregiversofpeoplewho
werehospitalizedforvariousdiseasesfoundthat
caregiversofpeoplewhowerehospitalizedfor
dementiaweremorelikelythancaregiversofpeople
whowerehospitalizedforotherdiseasestodiein
thefollowingyear.(74)(Thesefindingswereadjusted
fortheageofthespousecaregiver.)Amongmale
caregivers,9percentdiedintheyearaftertheir
wife’shospitalizationfordementia,comparedwith
6percentwhodiedintheyearafterthewife’s
hospitalizationforcoloncancerand7percentwho
diedintheyearafterthewife’shospitalizationfor
stroke.Amongfemalecaregivers,5percentdiedin
theyearaftertheirhusband’shospitalizationfor
dementia,comparedwith3percentwhodiedinthe
yearafterthehusband’shospitalizationforcolon
cancerand4percentwhodiedintheyearafterthe
husband’shospitalizationforstroke.(74)
2010 Alzheimer’s Disease Facts and Figures Caregiving
Createdfromdatafromthe2009NationalAllianceforCaregiving/AARPsurveyoncaregivingintheUnitedStates,preparedundercontractfor theAlzheimer’sAssociationbyMatthewGreenwaldandAssociates,November11,2009.(43)
45
40
35
30
25
20
15
10
5
0
Figure 9: Proportion of Alzheimer and Dementia Caregivers vs. Caregivers of Other Older People Who Report High or Very High Emotional Stress Due to Caregiving, United States, 2009
CaregiversofpeoplewithAlzheimer’sandotherdementias
Caregiversofotherolderpeople
Percent
40%
28%
30
Impact on the Caregiver’s Employment
ManycaregiversofpeoplewithAlzheimer’sandother
dementiashavetoquitwork,reducetheirworkhours
ortaketimeoffbecauseofcaregivingresponsibilities.
•The2009NAC/AARPsurveyoncaregivinginthe
UnitedStatesfoundthat60percentoffamilycare-
giversofpeoplewithAlzheimer’sandotherdemen-
tiaswereemployedfulltimeorparttime.Ofthose
whowereemployed,two-thirdssaidtheyhadtogo
inlate,leaveearlyortaketimeoffbecauseofcare-
giving;14percenthadtotakealeaveofabsence;
10percenthadtoreducetheirhoursortakealess
demandingjoband10percenthadtoquitwork
entirelyortakeearlyretirementduetocaregiving.(43)
•Anotherstudyoffamilyandotherunpaidcare-
giversofmorethan2,000olderpeoplefoundthat
caregiversofpeoplewhohadAlzheimer’sorother
dementiawithoutbehavioralsymptomswere
31percentmorelikelythancaregiversofother
olderpeopletohavereducedtheirhoursorquit
work.(75)CaregiversofpeoplewhohadAlzheimer’s
orotherdementiawithbehavioralsymptomswere
68percentmorelikelythancaregiversofotherolder
peopletohavereducedtheirhoursorquitwork.(75)
• Therecenteconomicdownturnandupheavalsin
thefinancialandmortgagemarketshaveincreased
employment-relateddifficultiesforfamilycaregivers,
includingcaregiversofpeoplewithAlzheimer’sand
otherdementias.Inresponsetoasurveyconducted
forEvercareandtheNACinFebruaryandMarch
2009,one-halfoffamilycaregiverssaidtheyhad
becomemorecautiousabouttakingtimeofffrom
work;one-thirdsaidtheyhadtoworkmorehoursor
getasecondjob;43percentsaidtheirworkhoursor
payhadbeencutand15percentsaidtheyhadlost
theirjob.(76)
Impact on the Caregiver’s Income and
Financial Security
Familyandotherunpaidcaregiverswhoturndown
promotions,reducetheirworkhoursorquitwork
alsolosejob-relatedincomeandbenefits,including
employercontributionstotheirownretirement
savings.Inaddition,peoplewithAlzheimer’sand
otherdementiasusesubstantialamountsofpaidcare.
Someofthiscareiscoveredforsomepeoplebypublic
programsandprivateinsurance,butthefamilyoften
hastopayout-of-pocketformuchofthecare.
•Onestudyfoundthat49percentoffamilyandother
unpaidcaregiversofpeoplewithAlzheimer’sand
otherdementias(notincludingspousecaregivers)
hadcaregiving-relatedout-of-pocketexpenditures
thataveraged$219amonth.(44)
•Anotherstudyoffamilycaregiversofpeopleage
50andover,includingpeoplewithAlzheimer’sand
otherdementias,foundthatlong-distancecaregivers
hadhighercaregiving-relatedout-of-pocketexpendi-
turesthanothercaregivers.(77)
• The2009Evercare/NACsurveyfoundthatthe
economicdownturnhasincreasedfinancialdifficul-
tiesforfamilycaregivers.Inresponsetothesurvey,
24percentofthefamilycaregiverssaidtheyhave
hadtocutbackoncare-relatedspendingbecauseof
changesintheirownfinancialsituation.Another
13percentsaidtheyhavehadtoincreasetheircare-
relatedspendingbecauseofchangesinthefinancial
situationofthepersonforwhomtheyprovidecare,
and many of these caregivers said that, as a result,
theyhavehaddifficultypayingfortheirownbasic
necessities(65percent)andsavingfortheirown
retirement(63percent).(76)
Caregiving 2010 Alzheimer’s Disease Facts and Figures
31
Table 5: Number of Alzheimer and Dementia Caregivers, Hours of Unpaid Care and Economic Value of the Care by State, 2009*
Number of Alzheimer/ Hours of Unpaid Value of State Dementia Caregivers Care per Year Unpaid Care
Alabama 187,870 213,946,599 $2,460,385,885
Alaska 16,313 18,577,116 $213,636,835
Arizona 200,776 228,643,676 $2,629,402,278
Arkansas 124,841 142,168,622 $1,634,939,155
California 1,233,164 1,404,327,156 $16,149,762,293
Colorado 161,600 184,029,717 $2,116,341,750
Connecticut 125,758 143,213,278 $1,646,952,695
Delaware 33,201 37,809,522 $434,809,501
DistrictofColumbia 18,803 21,413,136 $246,251,059
Florida 639,445 728,200,485 $8,374,305,572
Georgia 396,469 451,499,270 $5,192,241,609
Hawaii 33,762 38,447,996 $442,151,956
Idaho 52,635 59,941,041 $689,321,970
Illinois 386,207 439,812,201 $5,057,840,312
Indiana 235,114 267,747,257 $3,079,093,454
Iowa 106,474 121,252,735 $1,394,406,454
Kansas 94,022 107,071,851 $1,231,326,281
Kentucky 171,061 194,804,396 $2,240,250,556
Louisiana 181,101 206,237,562 $2,371,731,962
Maine 51,267 58,383,133 $671,406,028
Maryland 187,814 213,882,421 $2,459,647,842
Massachusetts 234,497 267,045,164 $3,071,019,381
Michigan 402,327 458,170,316 $5,268,958,629
Minnesota 196,105 223,324,620 $2,568,233,134
Mississippi 148,180 168,747,146 $1,940,592,184
2010 Alzheimer’s Disease Facts and Figures Caregiving
32
Number of Alzheimer/ Hours of Unpaid Value of State Dementia Caregivers Care per 100,000 Unpaid Care
Table 5 (Continued): Number of Alzheimer and Dementia Caregivers, Hours of Unpaid Care and Economic Value of the Care by State, 2009*
Missouri 202,662 230,791,080 $2,654,097,424
Montana 37,214 42,379,684 $487,366,362
Nebraska 60,685 69,108,542 $794,748,232
Nevada 84,761 96,525,424 $1,110,042,377
NewHampshire 46,059 52,452,237 $603,200,730
NewJersey 321,903 366,582,650 $4,215,700,478
NewMexico 65,255 74,312,763 $854,596,776
NewYork 720,796 820,842,714 $9,439,691,215
NorthCarolina 356,851 406,381,406 $4,673,386,174
NorthDakota 19,471 22,173,851 $254,999,287
Ohio 435,059 495,444,985 $5,697,617,333
Oklahoma 126,673 144,255,073 $1,658,933,342
Oregon 136,067 154,953,263 $1,781,962,527
Pennsylvania 484,404 551,639,745 $6,343,857,071
RhodeIsland 39,138 44,569,838 $512,553,133
SouthCarolina 182,657 208,009,979 $2,392,114,762
SouthDakota 30,393 34,611,825 $398,035,992
Tennessee 252,062 287,047,687 $3,301,048,405
Texas 852,820 971,191,823 $11,168,705,965
Utah 101,151 115,191,322 $1,324,700,201
Vermont 17,600 20,042,455 $230,488,238
Virginia 280,043 318,912,890 $3,667,498,236
Washington 203,784 232,069,356 $2,668,797,592
WestVirginia 93,568 106,554,842 $1,225,380,682
Wisconsin 200,196 227,982,824 $2,621,802,480
Wyoming 17,809 20,280,871 $233,230,016
U.S. Totals 10,987,887 12,513,005,548 $143,899,563,806
*DifferencesbetweenU.S.Totalsandsummingthestatenumbersaretheresultofrounding.
Createdfromdatafromthe2000BRFSS,U.S.CensusBureau,NationalAllianceforCaregiving,AARPandU.S.DepartmentofLabor.A6,A7,A8
Caregiving 2010 Alzheimer’s Disease Facts and Figures
33
People with Alzheimer’s disease and other dementias are high users of health care, long-term care and hospice.
Use and Costs of Health Care, Long-Term Care and Hospice
5
34
Totalpaymentsforthesetypesofcarefromallsources,
including Medicare and Medicaid, are three times higher
forolderpeoplewithAlzheimer’sandotherdementias
thanforotherolderpeople.Asthenumberofpeople
withtheseconditionsgrowsinthefuture,paymentsfor
theircarewillincreasedramatically.
Total Payments for Health Care, Long-Term Care and Hospice
In2004,totalperpersonpaymentsfromallsourcesfor
healthcare,long-termcareandhospicewerethreetimes
higherforMedicarebeneficiariesaged65andolderwith
Alzheimer’s and other dementias than for other Medicare
beneficiariesinthesameagegroup.(78),A9
MostolderpeoplewithAlzheimer’sdiseaseandother
dementias have Medicare,A10 and their high use of
hospitalandotherhealthcareservicestranslatesinto
highcostsforMedicare.In2004,Medicarepayments
perpersonforbeneficiariesaged65andolderwith
Alzheimer’s and other dementias were almost three
timeshigherthanaverageMedicarepaymentsforother
Medicarebeneficiariesinthesameagegroup($15,145
comparedwith$5,272perperson;Table6).(78)
Medicaidpaysfornursinghomeandotherlong-term
careservicesforsomepeoplewithverylowincome
and low assets,A11 and the high use of these services
bypeoplewithAlzheimer’sandotherdementias
translatesintohighcostsforMedicaid.In2004,
MedicaidpaymentsperpersonforMedicarebeneficia-
riesaged65andolderwithAlzheimer’sandother
dementias were more than nine times higher than
MedicaidpaymentsforotherMedicarebeneficiariesin
thesameagegroup($6,605comparedwith$718per
person;Table6).(78)
Basedontheaverageperpersonpaymentsfrom
allsourcesforhealthcareandlong-termcare
servicesforpeopleaged65andolderwithAlzheimer’s
diseaseandotherdementiasin2004,asshownin
Table6,totalpaymentsfor2010areexpectedtobe
$172billion,including$123billionforMedicareand
Medicaid.A12
Table 6: Average per Person Payments for Healthcare and Long-Term Care Services, Medicare Beneficiaries Aged 65 and Older, with and without Alzheimer’s Disease or Other Dementia, 2004 Medicare Current Beneficiary Survey
Beneficiaries with Alzheimer’s Beneficiaries with No Alzheimer’s or Other Dementia or Other Dementia
TotalPayments* $33,007 $10,603
Payments from Specified Sources
Medicare 15,145 5,272
Medicaid 6,605 718
Privateinsurance 1,847 1,466
Otherpayers 519 211
HMO 410 704
Out-of-pocket 2,464 1,916
Uncompensated 261 201
*Paymentsbysourcedonotequaltotalpaymentsexactlyduetotheeffectofpopulationweighting.
CreatedfromdatafromAlzheimer’sAssociation,Characteristics, Costs and Health Service Use for Medicare Beneficiaries with a Dementia Diagnosis: Report 1: Medicare Current Beneficiary Survey,2009.(78)
Use and Costs of Health Care, Long-Term Care and Hospice 2010 Alzheimer’s Disease Facts and Figures
35
Costs to U.S. Businesses of Care for People with Alzheimer’s and Other Dementias
American businesses incur high costs due to lost
productivity,missedworkandreplacementexpenses
foremployeeswhoarecaringforapersonwith
Alzheimer’s or other dementia and have to reduce their
hours,taketimeofforcompletelyquitworking
becauseofthedemandsofcaregiving.Onestudy
estimatedthatin2002,thecosttoU.S.businessesfor
employeeswhoarecaregiversofpeoplewith
Alzheimer’sandotherdementiaswas$36.5billion.(79)
Thisstudyalsoestimatedthatin2002,U.S.busi-
nessespaidanadditional$24.6billionforhealthcare,
long-termcareandhospiceforpeoplewithAlzheimer’s
andotherdementias.Thesepaymentsincludeddirect
paymentsbybusinessesforcareoftheirownretirees
aswellasgovernmenttaxesthatareusedfor
Medicare,Medicaidandotherpubliclyfunded
programsthatpayforhealthcare,long-termcare
andhospice.
Use and Costs of Healthcare Services
PeoplewithAlzheimer’sdiseaseandotherdementias
havemorethanthreetimesasmanyhospitalstaysas
otherolderpeople.TheirtotalMedicarecostsand
Medicarecostsforhospitalcarearealmostthreetimes
higherthanforotherMedicarebeneficiaries.Moreover,
useofhealthcareservicesforpeoplewithother
serious medical conditions is strongly affected by the
presenceorabsenceofcoexistingAlzheimer’sorother
dementia.Inparticular,peoplewithcoronaryheart
disease, diabetes, congestive heart failure and cancer
who also have Alzheimer’s or other dementia have
higher use and costs of healthcare services than
peoplewiththesemedicalconditionsbutno
Alzheimer’sordementia.
UseofHealthcareServicesbySetting
OlderpeoplewithAlzheimer’sdiseaseandother
dementiashavemorehospitalstays,skillednursing
home stays and home health care visits than other
olderpeople.
•Hospital.In2004,Medicarebeneficiariesaged65
and older with Alzheimer’s and other dementias
were3.1timesmorelikelythanotherMedicare
beneficiariesinthesameagegrouptohavea
hospitalstay(828hospitalstaysper1,000
beneficiarieswithAlzheimer’sandotherdemen-
tiascomparedwith266hospitalstaysper1,000
beneficiariesforotherMedicarebeneficiaries).(78)
Atanypointintime,aboutone-quarterofall
hospitalpatientsaged65andolderarepeople
withAlzheimer’sandotherdementias.(80)
•Skilled nursing facility.In2004,Medicarebenefi-
ciariesaged65andolderwithAlzheimer’sand
otherdementiaswereeighttimesmorelikelythan
otherMedicarebeneficiariesinthesameage
grouptohaveaMedicare-coveredstayinaskilled
nursingfacility(319staysper1,000beneficiaries
withAlzheimer’sandotherdementiascompared
with39staysper1,000beneficiariesforother
beneficiaries).(78)
•Home health care.In2004,one-quarterof
Medicarebeneficiariesaged65andolderwho
receivedMedicare-coveredhomehealthcare
serviceswerepeoplewithAlzheimer’sandother
dementias,(81)about twice as many as one would
expectgiventheproportionofMedicarebenefi-
ciaries with Alzheimer’s and other dementias
amongallMedicarebeneficiaries.
2010 Alzheimer’s Disease Facts and Figures Use and Costs of Health Care, Long-Term Care and Hospice
36
CostsofHealthcareServicesbySetting
In2004,averageperpersonpaymentsfromallsources
forhealthcareservices,includinghospital,physician
andothermedicalprovider,skillednursingfacility,
homehealthcareandprescriptionmedications,were
higherforMedicarebeneficiariesaged65andolder
with Alzheimer’s and other dementias than for other
Medicarebeneficiariesinthesameagegroup(Table7).
AsshowninFigure10,averageperpersonpayments
fromallsourcesforhospitalcareforMedicarebenefi-
ciariesaged65andolderwithAlzheimer’sandother
dementiaswere2.8timeshigherthanforother
Medicarebeneficiariesinthesameagegroup($7,663
perpersoncomparedwith$2,748perpersonfor
beneficiarieswithnoAlzheimer’sorotherdementia).(78)
Someoftheuseandcostsofhospitalcareforpeople
with Alzheimer’s disease and other dementias are
potentiallypreventable.A potentially preventable
hospitalization isdefinedasahospitalizationfora
conditionthatcanbepreventedaltogetherorwhose
coursecanbemitigatedwithoptimumoutpatient
management,thuspreventingthehospitalization.(82)
In1999,Medicarebeneficiariesaged65andolder
with Alzheimer’s disease and other dementias were
2.4timesmorelikelythanotherMedicarebeneficiaries
inthatagegrouptohaveapotentiallypreventable
hospitalization.(82)
Onestudyofalarge,nationallyrepresentativesample
ofpeopleaged70andolderfoundthatthosewith
cognitiveimpairmentwhosaid(ortheirproxyrespon-
dent said) that a doctor had told them they had
Alzheimer’sdiseaseorotherdementiahadsignificantly
morephysiciancontacts(includingbothin-personand
telephonecontacts)andsignificantlyfewerhospital
daysthanacomparisongroupofpeoplewithcognitive
impairmentwhosaid(ortheirproxyrespondentsaid)
that a doctor had not told them they had Alzheimer’s
diseaseorotherdementia.(83)Thisfindingsuggests
that recognition of Alzheimer’s or other dementia by
thedoctor,thepersonwiththeconditionand/orthe
familymayincreaseoptimumoutpatientmanagement
andreducehospitaldays.
Table 7: Average per Person Payments for Healthcare Services, Medicare Beneficiaries Aged 65 and Older with or without Alzheimer’s Disease and Other Dementias, 2004 Medicare Current Beneficiary Survey
Average per Person Average per Person Payment for Those Payment for Those with No Alzheimer’s or with Alzheimer’s or Healthcare Service Other Dementia Other Dementia
Hospital $2,748 $7,663
Medicalprovider* 3,097 4,355
Skillednursingfacility 333 3,030
Homehealthcare 282 1,256
Prescriptionmedications** 1,728 2,509
*“Medicalprovider”includesphysician,othermedicalproviderandlaboratoryservicesandmedicalequipmentandsupplies.
**Informationonpaymentsforprescriptiondrugsisonlyavailableforpeoplewhowerelivinginthecommunity;thatis, notinanursinghomeorassistedlivingfacility.
CreatedfromdatafromAlzheimer’sAssociation,Characteristics, Costs and Health Service Use for Medicare Beneficiaries with a Dementia Diagnosis: Report 1: Medicare Current Beneficiary Survey, 2009.(78)
Use and Costs of Health Care, Long-Term Care and Hospice 2010 Alzheimer’s Disease Facts and Figures
37
ImpactofCoexistingMedicalConditionsonUseand
CostsofHealthcareServices
MostpeoplewithAlzheimer’sandotherdementiashave
oneormoreotherseriousmedicalconditions.Forexample,
in2004,26percentofMedicarebeneficiariesaged65and
older with Alzheimer’s and other dementias also had
coronaryheartdisease;23percentalsohaddiabetes;
16percentalsohadcongestiveheartfailureand13percent
alsohadcancer(Table8).(78)
Table 8: Percentages of Medicare Beneficiaries Aged 65 and Older with Alzheimer’s Disease and Other Dementias by Specified Coexisting Medical Conditions, 2004 Medicare Current Beneficiary Survey
Percentage with Alzheimer’s or Other Dementia and the Coexisting Condition Coexisting Condition
Hypertension 60%
Coronaryheartdisease 26%
Stroke—lateeffects 25%
Diabetes 23%
Osteoporosis 18%
Congestiveheartfailure 16%
Chronicobstructivepulmonarydisease 15%
Cancer 13%
Parkinson’sdisease 8%
CreatedfromdatafromAlzheimer’sAssociation,Characteristics, Costs and Health Service Use for Medicare Beneficiaries with a Dementia Diagnosis: Report 1: Medicare Current Beneficiary Survey, 2009.(78)
2010 Alzheimer’s Disease Facts and Figures Use and Costs of Health Care, Long-Term Care and Hospice
CreatedfromdatafromAlzheimer’sAssociation,Characteristics, Costs and Health Service Use for Medicare Beneficiaries with a Dementia Diagnosis: Report 1: Medicare Current Beneficiary Survey, 2009.(78)
$9,000
$8,000
$7,000
$6,000
$5,000
$4,000
$3,000
$2,000
$1,000
0
Figure 10: Average per Person Payments for Hospital Care for Medicare Beneficiaries Aged 65 and Older Who Have Alzheimer’s Disease and Other Dementias Compared with Other Medicare Beneficiaries, 2004 Medicare Current Beneficiary Survey
BeneficiarieswithAlzheimer’sandotherdementias
BeneficiarieswithoutAlzheimer’sandotherdementias
$7,663
$2,748
38
PeoplewithseriousmedicalconditionsandAlzheimer’s
orotherdementiaaremorelikelytobehospitalizedthan
peoplewiththesameseriousmedicalconditionsbutno
Alzheimer’sorotherdementia(Figure11).Theyalsohave
longerhospitalstays.
Averageperpersonpaymentsformanyhealthcare
servicesarealsohigherforpeoplewhohaveother
serious medical conditions and Alzheimer’s or other
dementiathanforpeoplewhohavetheotherserious
medicalconditionsbutnoAlzheimer’sorotherdementia.
Table9showsthetotalaverageperpersonMedicare
paymentsandaverageperpersonMedicarepayments
forselectedMedicareservicesforbeneficiarieswith
other serious medical conditions who either do or do not
haveAlzheimer’sorotherdementia.(84) With one
exception,Medicarebeneficiarieswithaserious
medical condition and Alzheimer’s or other dementia
hadhigheraverageperpersonpaymentsthan
Medicarebeneficiarieswiththesamemedical
conditionbutnoAlzheimer’sorotherdementia.The
oneexceptionisaverageperpersonpaymentfor
physicianvisitsforpeoplewithcongestiveheart
failure,wheretheaverageperpersonpaymentis$29
lowerforMedicarebeneficiarieswithcongestiveheart
failure and Alzheimer’s or other dementia than for
Medicarebeneficiarieswithcongestiveheartfailure
andnoAlzheimer’sorotherdementia($1,470per
personcomparedwith$1,499perperson).(84)
Use and Costs of Health Care, Long-Term Care and Hospice 2010 Alzheimer’s Disease Facts and Figures
1,200
1,000
800
600
400
200
0
CreatedfromdatafromAlzheimer’sAssociation,Characteristics, Costs and Health Service Use for Medicare Beneficiaries with a Dementia Diagnosis: Report 2: National 20% Sample Medicare Fee-for-Service Beneficiaries, 2009.(84)
Figure 11: Hospital Stays per 1,000 Medicare Beneficiaries Aged 65 and Older with Selected Medical Conditions by Presence or Absence of Alzheimer’s Disease and Other Dementias, 2004
CoronaryHeartDisease Diabetes CongestiveHeartFailure Cancer
WithotherconditionplusAlzheimer’sorotherdementiaWithotherconditionandnoAlzheimer’sorotherdementia
946
668
902
550
976
822791
490
39
Use and Costs of Long-Term Care Services
MostpeoplewithAlzheimer’sdiseaseandother
dementiasliveathome,usuallywithhelpfromfamily
andfriends.Astheirdementiaprogresses,they
generally receive more and more care from family and
otherunpaidcaregivers.ManypeoplewithAlzheimer’s
andotherdementiasalsoreceivepaidservicesat
home;inadultdaycenters,assistedlivingfacilitiesor
nursinghomes;orinmorethanoneofthesesettings
at different times in the often long course of their
illness.Giventhehighaveragecostoftheseservices
(e.g.,adultdaycenterservices,$67aday,assisted
living,$37,572ayear,andnursinghomecare,
$72,270–$79,935ayear),mostpeoplewith
Alzheimer’s and other dementias and their families
cannotaffordthemforlong. Medicaid is the only
federalprogramthatwillcoverthelongnursinghome
staysthatmostpeoplewithdementiarequireinthe
latestagesoftheirillness,butMedicaidrequires
beneficiariestobepoortoreceivecoverage.Private
long-termcareinsuranceisonlyanoptionforthose
who have the foresight and are healthy and wealthy
enoughtopurchasepoliciesbeforedeveloping
dementia.
UseofLong-TermCareServicesbySetting
Atanyonetime,about70percentofpeoplewith
Alzheimer’sandotherdementiasarelivingathome.(85)
Mostofthesepeoplereceiveunpaidhelpfromfamily
membersandfriends,butsomealsoreceivepaid
homeandcommunity-basedservices,suchas
personalcareandadultdaycentercare.Astudyof
Table 9: Average per Person Payments by Type of Service and Medical Condition, Medicare Beneficiaries with or without Alzheimer’s Disease and Other Dementias, 2006 Medicare Claims*
Coronary Heart Disease
WithAD/D $20,780 $7,453 $1,494 $3,072 $1,497
WithoutAD/D 14,640 5,809 1,292 963 743
Diabetes
WithAD/D 20,655 7,197 1,412 3,071 1,651
WithoutAD/D 12,979 4,799 1,129 923 757
Congestive Heart Failure
WithAD/D 21,315 7,642 1,470 3,203 1,504
WithoutAD/D 17,739 7,172 1,499 1,424 1,026
Cancer
WithAD/D 18,775 6,198 1,328 2,488 1,283
WithoutAD/D 13,600 4,308 1,095 704 499
*ThistabledoesnotincludepaymentsforallkindsofMedicareservices,andasaresulttheaverageperperson paymentsforspecificMedicareservicesdonotsumtothetotalperpersonMedicarepayments.
CreatedfromdatafromAlzheimer’sAssociation,Characteristics, Costs and Health Service Use for Medicare Beneficiaries with a Dementia Diagnosis: Report 2: National 20% Sample Medicare Fee-for-Service Beneficiaries,2009.(84),A13
Average per Person Medicare Payment
Payment for Payment for Total Payment for Payment for Skilled Nursing Home Payment Hospital Care Physician Care Facility Care Health Care
Selected Medical Condition by Alzheimer’s Disease/Dementia (AD/D) Status
2010 Alzheimer’s Disease Facts and Figures Use and Costs of Health Care, Long-Term Care and Hospice
40
olderpeoplewhoneededhelptoperformdaily
activities,suchasdressing,bathing,shoppingand
managing money, found that those who also had
cognitiveimpairmentweremorethantwiceaslikelyas
thosewhodidnothavecognitiveimpairmentto
receivepaidhomecare.(86) In addition, those who had
cognitiveimpairmentandreceivedpaidservicesused
almost twice as many hours of care monthly as those
whodidnothavecognitiveimpairment.(86)
PeoplewithAlzheimer’sandotherdementiasmakeup
alargeproportionofallelderlypeoplewhoreceive
non-medicalhomecare,adultdaycenterservices,
assistedlivingandnursinghomecare.
•Home care.Morethanone-third(about37percent)
ofolderpeoplewhoreceivedprimarilynon-medical
homecareservices,suchaspersonalcareand
homemakerservices,throughstatehomecare
programsinConnecticut,FloridaandMichiganhad
cognitiveimpairmentconsistentwithdementia.(87-89)
•Adult day center services.Atleasthalfofelderly
adultdaycenterparticipantshaveAlzheimer’s
diseaseorotherdementia.(90-91)
•Assisted living care.Estimatesfromvariousstudies
indicatethat45–67percentofresidentsofassisted
living facilities have Alzheimer’s disease or other
dementia.(78,92)
•Nursing home care.In2008,68percentofall
nursing home residents had some degree of
cognitiveimpairment,including27percentwho
hadmildcognitiveimpairmentand41percent
whohadmoderatetoseverecognitiveimpairment
(Table10).(93)InJune2009,47percentofallnursing
home residents had a diagnosis of Alzheimer’s or
otherdementiaintheirnursinghomerecord.(94)
•Alzheimer’s special care unit.Nursinghomeshada
totalof84,221bedsinAlzheimer’sspecialcareunits
inJune2009,(95)accountingfor5percentofall
nursinghomebedsatthattime.Thenumberof
nursinghomebedsinAlzheimer’sspecialcareunits
increasedinthe1980sbuthasdecreasedsince
2004,whentherewere93,763bedsinsuchunits.(96)
Sincealmosthalfofnursinghomeresidentshave
Alzheimer’sorotherdementia,andonly5percentof
nursinghomebedsareinAlzheimer’sspecialcare
units, it is clear that the great majority of nursing
home residents with Alzheimer’s and other demen-
tiasarenotinAlzheimer’sspecialcareunits.
CostsofLong-TermCareServicesbySetting
Costsarehighforcareathomeorinanadultday
center,assistedlivingfacilityornursinghome.The
costfiguresinthefollowingbulletsareforallservice
usersandapplytopeoplewithAlzheimer’sandother
dementiasaswellasotherusersoftheseservices.
TheonlyexceptionisthecostofAlzheimer’sspecial
careunitsinnursinghomes,whichonlyapplytothe
peoplewithAlzheimer’sandotherdementiaswhoare
intheseunits.
•Home care.In2009,theaveragehourlyratefor
non-medicalhomecare,includingpersonalcareand
homemakerservices,was$19or$152foran
eight-hourday.(97)
•Adult day center services.In2009,theaverage
costofadultdayserviceswas$67aday.(97)Ninety-
fivepercentofadultdaycentersprovidedcarefor
peoplewithAlzheimer’sandotherdementias,and
2percentofthesecenterschargedanadditionalfee
fortheseclients.
Use and Costs of Health Care, Long-Term Care and Hospice 2010 Alzheimer’s Disease Facts and Figures
41
Alabama 51,482 28 27 45
Alaska 1,291 31 28 41
Arizona 41,443 46 25 29
Arkansas 34,114 24 29 47
California 258,863 35 26 39
Colorado 40,195 31 30 39
Connecticut 63,283 38 26 36
Delaware 9,716 35 27 38
DistrictofColumbia 5,176 37 23 40
Florida 208,486 40 23 37
Georgia 66,743 16 23 61
Hawaii 8,631 27 23 51
Idaho 12,296 31 28 41
Illinois 170,454 29 32 39
Indiana 85,600 36 27 37
Iowa 49,620 22 30 47
Kansas 36,106 23 31 46
Kentucky 51,147 31 24 45
Louisiana 43,506 24 27 49
Maine 18,434 35 25 40
Maryland 65,573 40 23 37
Massachusetts 103,502 35 24 42
Michigan 102,649 32 26 42
Minnesota 71,003 30 30 40
Mississippi 28,567 23 28 49
Missouri 79,422 30 31 39
Montana 11,283 25 30 45
Nebraska 27,381 27 30 43
Nevada 13,072 41 26 33
NewHampshire 15,867 33 24 43
NewJersey 119,505 42 24 34
NewMexico 13,116 30 28 43
Percentage of Residents at Each Level of Cognitive Impairment**
None Very Mild/ Mild Moderate/ SevereState Total Nursing Home Residents*
Use and Costs of Health Care, Long-Term Care and Hospice 2010 Alzheimer’s Disease Facts and Figures 2010 Alzheimer’s Disease Facts and Figures Use and Costs of Health Care, Long-Term Care and Hospice
Table 10: Cognitive Impairment in Nursing Home Residents by State, 2008
42
NewYork 229,599 35 26 40
NorthCarolina 89,223 34 24 42
NorthDakota 10,594 21 31 48
Ohio 191,179 30 27 43
Oklahoma 37,668 30 30 40
Oregon 27,336 35 29 36
Pennsylvania 185,933 32 27 41
RhodeIsland 17,242 32 28 40
SouthCarolina 38,530 29 23 49
SouthDakota 11,372 20 30 49
Tennessee 70,494 25 27 48
Texas 189,553 24 32 45
Utah 17,743 38 28 34
Vermont 6,912 29 25 46
Virginia 72,214 33 26 41
Washington 56,775 32 29 39
WestVirginia 22,104 36 22 42
Wisconsin 74,358 35 28 38
Wyoming 4,828 20 29 52
U.S. Total 3,261,183 32 27 41
State Total Nursing Home Residents*
Table 10 (Continued): Cognitive Impairment in Nursing Home Residents by State, 2008
Percentage of Residents at Each Level of Cognitive Impairment**
None Very Mild/ Mild Moderate/ Severe
*Thesefiguresincludeallindividualswhospentanytimeinanursinghomein2008.**Percentagesforeachstatemaynotsumto100percentbecauseofrounding.
CreatedfromdatafromU.S.DepartmentofHealthandHumanServices,CentersforMedicare andMedicaidServices.Nursing Home Data Compendium,2009Edition.(93)
Use and Costs of Health Care, Long-Term Care and Hospice 2010 Alzheimer’s Disease Facts and Figures
43
•Assisted living facility.In2009,theaveragecostfor
basicservicesinanassistedlivingfacilitywas$3,131
amonth,or$37,572ayear.(97)Fifty-ninepercentof
assistedlivingfacilitiesprovidedspecialized
Alzheimer’s and dementia care and charged an
averageof$4,435amonth,or$53,220ayear,for
thiscare.
•Nursing home.In2009,theaveragecostforaprivate
roominanursinghomewas$219aday,or$79,935a
year.Theaveragecostofasemi-privateroomina
nursinghomewas$198aday,or$72,270ayear.(97)
Twenty-ninepercentofnursinghomeshadseparate
Alzheimer’sspecialcareunits.Theaveragecostfor
aprivateroominanAlzheimer’sspecialcareunitwas
$233aday,or$85,045ayear,andtheaveragecost
forasemi-privateroomwas $208aday,or$75,920
ayear.(97)
AffordabilityofLong-TermCareServices
Few individuals with Alzheimer’s disease or other
dementiasandtheirfamiliescanaffordtopayfor
long-termcareservicesforaslongastheservicesare
needed.
• Incomeandassetdataarenotavailableforpeople
with Alzheimer’s or other dementia, but the median
incomeforpeopleaged65andolderwas$18,208
in2008.(98) The median income for households
headedbyanolderpersonwas$31,157.(98)Evenfor
olderpeoplewhoseincomesfallcomfortablyabove
the median, the costs of home care, adult day
center services, assisted living care or nursing
homecarecanquicklyexceedtheirincome.
• In2005,65percentofolderpeoplelivinginthe
community,and84percentofthoseathighriskof
needing nursing home care, had assets that would
payforlessthanayearinanursinghome.(99)
Fifty-sevenpercentofolderpeopleinthecommu-
nityand75percentofthoseathighriskofneeding
nursing home care did not have enough assets to
coverevenamonthinanursinghome.(99)
Long-TermCareInsurance
In2002,about6millionpeoplehadlong-termcare
insurancepolicies,whichpaidout$1.4billionfor
servicesforthosewhofiledclaimsinthatyear.(100)
Privatehealthandlong-termcareinsurancepolicies
fundedonlyabout9percentoftotallong-termcare
spendingin2006.(101)However,long-termcare
insuranceplaysasignificantroleinpayingforthecare
ofpeoplewithdementiawhopurchasepoliciesbefore
developingthedisease.
Astudyofpeoplefilingclaimsontheirlong-term
careinsurancepoliciesforthefirsttimeduring2003,
2004and2005showsthatabouttwo-thirdsofthose
filingclaimsforcareinassistedliving(63percent)
andnursinghomes(64percent)hadcognitiveimpair-
ment.(102)Thefigurewas28percentforthosefiling
claimsforpaidhomecare.
MedicaidCosts
Medicaidcoversnursinghomecareandotherlong-
term care services in the community for individuals
whomeetprogramrequirementsforlevelofcare,
incomeandassets.Toreceivecoverage,beneficiaries
musthavelowincomesorbepoorduetotheir
expendituresontheseservices.Thefederalgovern-
ment and the states share in managing and funding
theprogram,andstatesdiffergreatlyintheservices
coveredbytheirMedicaidprograms.
Medicaidplaysacriticalroleforpeoplewithdementia
whocannolongeraffordtopayfortheirlong-term
careexpensesontheirown.
• In2004,28percentofMedicarebeneficiariesaged
65andolderwithAlzheimer’sdiseaseorother
dementiawerealsoMedicaidbeneficiaries.(78)
•AbouthalfofallMedicaidbeneficiarieswith
Alzheimer’s or other dementia are nursing home
residents,andtherestliveinthecommunity.(85)
•AmongnursinghomeresidentswithAlzheimer’sand
otherdementias,51percentreliedonMedicaidto
helppayfortheirnursinghomecarein2000.(85)
2010 Alzheimer’s Disease Facts and Figures Use and Costs of Health Care, Long-Term Care and Hospice
44
Out-of-Pocket Costs for Healthcare and Long-Term Care Services
Although Medicare, Medicaid and other sources such
astheVeteransHealthAdministrationandprivate
insurancepayformosthospitalandotherhealthcare
servicesandsomelong-termcareservicesforolder
peoplewithAlzheimer’sandotherdementias,individ-
ualsandtheirfamiliesstillincurhighout-of-pocket
costs.ThesecostsareforMedicareandotherhealth
insurancepremiums,deductiblesandco-paymentsand
healthcareandlong-termcareservicesthatarenot
coveredbyMedicare,Medicaidorothersources.
In2004,Medicarebeneficiariesaged65andolderwith
Alzheimer’s disease and other dementias had average
perpersonout-of-pocketcoststotaling$2,464for
healthcareandlong-termcareservicesthatwerenot
coveredbyothersources(Table6).(78)Averageper
personout-of-pocketcostswerehighestforpeople
with Alzheimer’s and other dementias who were living
innursinghomesandassistedlivingfacilities($16,689
perperson).Out-of-pocketcostsforpeopleaged65
and older with Alzheimer’s and other dementias who
werelivinginthecommunitywere1.2timeshigher
thantheaverageforallotherMedicarebeneficiariesin
thatagegroup($2,298perpersonforpeoplewith
Alzheimer’sandotherdementiascomparedwith
$1,916perpersonforallMedicarebeneficiaries).(78)
BeforetheimplementationoftheMedicarePartD
PrescriptionDrugBenefitin2006,out-ofpocket
expenseswereincreasingannuallyforMedicare
beneficiaries.(103)In2003,out-of-pocketcostsfor
prescriptionmedicationsaccountedforaboutone-
quarteroftotalout-of-pocketcostsforallMedicare
beneficiariesaged65andolder.(104)Otherimportant
componentsofout-of-pocketcostswerepremiumsfor
Medicareandprivateinsurance(45percent)and
paymentsforhospital,physicianandotherhealthcare
services that were not covered by other sources
(31percent).TheMedicarePartDPrescriptionDrug
Benefithashelpedtoreduceout-of-pocketcostsfor
prescriptiondrugsformanyMedicarebeneficiaries,
•MostnursinghomeresidentswhoqualifyforMedicaid
mustspendalltheirSocialSecuritychecksandany
othermonthlyincome,exceptforaverysmallpersonal
needsallowance,topayfornursinghomecare.
Medicaidonlymakesupthedifferenceiftheresident
cannotpaythefullcostofcareorhasafinancially
dependentspouse.
•AmongolderpeoplewithAlzheimer’sdiseaseand
other dementias who were living in the community in
2000,18percentreliedonMedicaidtohelppayfor
theircare.(85)Dependingonwhichhomeandcommu-
nity-basedservicesarecoveredbyMedicaidintheir
state,thesepeoplecouldreceivepersonalcare,which
providesassistancewithdailyactivitieslikebathingand
dressing;homemakerservices;adultdaycare;respite
careorotherservices.
• In2004,totalperpersonMedicaidpaymentsfor
Medicaidbeneficiariesaged65andolderwith
Alzheimer’sandotherdementiaswere3.8timeshigher
thanMedicaidpaymentsforotherMedicaidbeneficia-
riesinthesameagegroup($23,631perMedicaid
beneficiarywithAlzheimer’sorotherdementia
comparedwith$6,236perMedicaidbeneficiarywith
noAlzheimer’sorotherdementia).(78)
MuchofthedifferenceinMedicaidpaymentsfor
beneficiarieswithAlzheimer’sandotherdementias
comparedwithotherMedicaidbeneficiariesisdueto
MedicaidpaymentsforbeneficiarieswithAlzheimer’s
and other dementias who live in nursing homes and other
residentialcarefacilities,suchasassistedlivingfacilities.
IncludingthelargeMedicaidpaymentsforMedicaid
beneficiarieswithAlzheimer’sandotherdementiasin
nursing homes and other residential care facilities, total
Medicaidpaymentsforbeneficiariesaged65andolder
with Alzheimer’s and other dementias were almost as
highin2004astotalMedicaidpaymentsforallother
Medicaidbeneficiariesinthatagegroupcombined
($19billioncomparedwith$22.6billion);(78) this was true
eventhoughMedicaidbeneficiariesaged65andolder
with Alzheimer’s and other dementias accounted for only
18percentofallMedicaidbeneficiariesaged65andolder
inthatyear.
Use and Costs of Health Care, Long-Term Care and Hospice 2010 Alzheimer’s Disease Facts and Figures
45
includingbeneficiarieswithAlzheimer’sandother
dementias.(105)Clearly,however,thebiggestcomponent
ofout-of-pocketcostsforpeoplewithAlzheimer’sand
other dementias is nursing home and other residential
care,andout-of-pocketcostsfortheseservicesare
likelytocontinuetogrowovertime.
Use and Costs of Hospice Care
Hospicesprovidemedicalcare,painmanagementand
emotionalandspiritualsupportforpeoplewhoare
dying,includingpeoplewithAlzheimer’sdiseaseand
otherdementias.Hospicesalsoprovideemotionaland
spiritualsupportandbereavementservicesforfamilies
ofpeoplewhoaredying.Themainpurposeofhospice
care is to allow individuals to die with dignity and
withoutpainandotherdistressingsymptomsthatoften
accompanyterminalillness.Individualscanreceive
hospiceintheirhomes,assistedlivingresidencesor
nursinghomes.Medicareistheprimarysourceof
paymentforhospicecare,butprivateinsurance,
Medicaidandothersourcesalsopayforhospicecare.
UseofHospiceServices
In2008,6percentofallpeopleadmittedtohospices
intheUnitedStateshadaprimaryhospicediagnosis
ofAlzheimer’sdiseaseorotherdementia(60,488
people).(106)Anadditional11percentofallpeople
admittedtohospicesintheUnitedStateshadaprimary
hospicediagnosisofnon-Alzheimer’sdementia
(113,204people).
ThenumberofpeoplewithAlzheimer’sandother
dementiaswhoreceivehospicecarehasincreasedin
thepastdecade.In1998,only3percentofallpeople
whoreceivedhospicecarehadaprimaryhospice
diagnosisofAlzheimer’sdisease(12,839people).(106) An
additional4percentwerepeoplewithaprimaryhospice
diagnosisofnon-Alzheimer’sdementia(15,148people).
Hospicelengthofstayhasalsoincreasedoverthepast
decade.Theaveragelengthofstayforhospicebenefi-
ciarieswithaprimaryhospicediagnosisofAlzheimer’s
diseaseincreasedfrom67daysin1998to105days
in2008.(106)Theaveragelengthofstayforhospice
beneficiarieswithaprimarydiagnosisofnon-
Alzheimer’sdementiaincreasedfrom57daysin1998
to89daysin2008.Overthesameperiod,average
lengthofstayalsoincreasedforhospicebeneficiaries
withotherprimaryhospicediagnoses,including
congestiveheartfailure(52daysin1998to75daysin
2008)andstroke(36daysin1998to53daysin2008).
CostsofHospiceServices
In2004,totalpaymentsfromallsourcesforhospice
careforMedicarebeneficiariesaged65andolderwith
Alzheimer’sandotherdementiastotaled$2.8billion.(78)
Averageperpersonpaymentsforhospicecarefor
beneficiariesaged65andolderwithAlzheimer’sor
other dementia were eight times higher than for other
Medicarebeneficiariesinthesameagegroup($976
perpersoncomparedwith$120perperson).(78)
2010 Alzheimer’s Disease Facts and Figures Use and Costs of Health Care, Long-Term Care and Hospice
46
Older African-Americans and Hispanics are considerably more likely than older whites to have Alzheimer’s disease and other dementias.(107-108)
6 Special Report: Race, Ethnicity and Alzheimer’s Disease
47 2010 Alzheimer’s Disease Facts and Figures Special Report: Race, Ethnicity and Alzheimer’s Disease
Findings from different studies vary, but the available
researchindicatesthatintheUnitedStates,older
African-Americansareprobablyabouttwotimesmore
likelythanolderwhitestohaveAlzheimer’sandother
dementias.OlderHispanicsareprobablyatleastone
andone-halftimesmorelikelythanolderwhitesto
havetheseconditions.
Whendifferencesbetweenracialandethnicgroups
are found, it is sometimes assumed that the differ-
encesmustbeduetogeneticfactors,butnoknown
genetic factors can account for the differences in the
prevalenceofAlzheimer’sdiseaseandotherdemen-
tiasamongolderwhites,African-Americansand
Hispanics.Ontheotherhand,conditionssuchashigh
bloodpressureanddiabetes,bothofwhichareknown
riskfactorsforAlzheimer’sdiseaseanddementia,are
morecommoninolderAfrican-Americansand
Hispanicsthaninolderwhitesandprobablyaccount
forsomeofthedifferencesinprevalenceof
Alzheimer’sandotherdementiasamongthesegroups.
Likewise,lowerlevelsofeducationandothersocio-
economic characteristics that are associated with
increasedriskforAlzheimer’sdiseaseandother
dementiasaremorecommoninolderAfrican-
AmericansandHispanicsthaninolderwhitesand
probablyalsoaccountforsomeofthedifferencesin
prevalenceamongthegroups.
ThisSpecialReportprovidesinformationaboutthe
prevalenceofAlzheimer’sdiseaseandotherdemen-
tias by race and ethnicity and the factors that are
associatedwithandprobablyaccountforsomeofthe
differencesinprevalenceamongwhites,African-
AmericansandHispanics.Thereportalsoprovides
informationabouttheextenttowhichAlzheimer’sand
other dementias are diagnosed in different racial and
ethnicgroups,theproportionofolderMedicare
beneficiarieswithAlzheimer’sandotherdementiasby
race and ethnicity and differences in the use and costs
ofmedicalservicesforolderwhite,African-American,
HispanicandotherMedicarebeneficiarieswith
theseconditions.
Todevelopthisreport,theAlzheimer’sAssociation
convenedanExpertPanelA14andreviewedfindings
frompublishedstudies.TheAssociationalso
contractedforinformationfromthe2006Healthand
RetirementStudy(HRS)survey,alarge-scalesurveyof
anationallyrepresentativesampleofolderAmericans,
andobtainednewMedicaredataontheproportionof
olderMedicarebeneficiarieswithAlzheimer’sand
other dementias by race and ethnicity and the use
and costs of medical services in different racial and
ethnicgroups.
Ideally,informationabouttheprevalenceof
Alzheimer’s disease and other dementias in different
racialandethnicgroupswouldbebasedonstudies
that conducted a standardized diagnostic evaluation to
identifypeoplewiththeseconditionsandincludeda
nationallyrepresentativesamplelargeenoughtoallow
forvalidestimatesofprevalencebyraceandethnicity.
TheonlysuchstudycompletedtodateistheAging,
Demographics,andMemoryStudy(ADAMS),which
providesinformationabouttheprevalenceof
Alzheimer’s and other dementias in whites and
African-Americansaged71andolder.(12,109) Findings
fromADAMSshowthatAfrican-Americansaged71
andolderarealmosttwotimesmorelikelythanwhites
inthesameagegrouptohaveAlzheimer’sorother
dementia(21.3percentofAfrican-Americans
comparedwith11.2percentofwhites).(109)
ToestimatetheprevalenceofAlzheimer’sandother
dementiasinwhiteandAfrican-Americanpeople
underage71andHispanicsofanyage,thisreport
usesfindingsfromotherstudiesthatconducteda
standardizeddiagnosticevaluationtoidentifypeople
with Alzheimer’s and other dementias and included a
samplerepresentativeofthepopulationofagiven
geographicarea.Thereportusesfindingsfromthe
HRS,whichpertaintocognitiveimpairmentratherthan
Alzheimer’sordementiaspecifically,toprovideabroad
nationalcontextandfoundationforthinkingaboutthe
prevalenceofcognitiveimpairment,Alzheimer’sand
48 Special Report: Race, Ethnicity and Alzheimer’s Disease 2010 Alzheimer’s Disease Facts and Figures
Alzheimer’s Association Positions on
Diversity and Inclusiveness
Diversity Definition
The Alzheimer’s Association recognizes a broad
concept of diversity, which includes considerations
of, but is not limited to, race; ethnicity; gender;
age; socioeconomic status; sexual orientation;
regional, place or national origin; religion;
language and disability.
Inclusiveness Definition
The Alzheimer’s Association is inclusive of its
diverse constituents and ensures that their interests
and needs are welcomed and fully considered in
our multiple communications platforms, mission
activities and business practices.
Diversity and Inclusiveness Statement
At the Alzheimer’s Association, diversity is
imperative and integral to our mission. It is vital to
what we do and is a promise we make to those we
serve. Our team of dedicated professionals
understands that valuing diversity and inclusiveness
is critical to the success of our mission.
We seek to be inclusive of the millions of people
currently affected by Alzheimer’s disease, their
caregivers and the communities in which they live.
As the American population ages and becomes
increasingly diverse, the Alzheimer’s Association
will expand its mission activities to remain
inclusive and meet the demand for culturally and
linguistically sensitive information and increased
awareness of people living with the disease.
We at the Alzheimer’s Association will continue
to cultivate relationships within diverse communi-
ties by sharing our time, talent and resources and
by exchanging ideas. Our diversity and inclusive-
ness charter will help us to fulfill our vision of a
world without Alzheimer’s disease.
Special Report on Race, Ethnicity and
Alzheimer’s Disease
The following Special Report on Race, Ethnicity
and Alzheimer’s Disease addresses one important
aspect of diversity and inclusion. The Alzheimer’s
Association understands that many diversity and
inclusiveness issues can have significant impact on
diagnosis, treatment and individuals’ and families’
experiences with Alzheimer’s disease, as well as
on our understanding of key research questions.
The Alzheimer’s Association is committed
to increasing awareness, knowledge and under-
standing of these factors and will continue
to address them in service delivery, research
and publications.
49
otherdementiasintheUnitedStatesandaboutthe
healthandsocioeconomicfactorsthatprobably
accountforsomeofthedifferencesinprevalence
amongracialandethnicgroups.
From2010to2050,asthetotalnumberofAmericans
aged65andolderincreasesfrom40millionto
89million,theproportionofolderAmericansin
differentracialandethnicgroupsisexpectedtochange
markedly.In2010,whitesconstituteabout80percent
oftheU.S.populationaged65andolder.(110)African-
Americansconstituteabout9percent,andHispanics
constituteabout7percent.Otherracialandethnic
groups,includingAsian-Americans,AmericanIndians
andAlaskanNatives,andNativeHawaiiansandPacific
Islanders,constitutetheremaining4percent.In2050,
itisexpectedthatwhiteswillconstituteasmaller
proportionoftheolderpopulation(59percent).
African-Americanswillconstitutealargerproportion
(12percent),Hispanicswillconstituteamuchlarger
proportion(20percent),andotherracialandgroupswill
constitutetheremaining9percent.Improvedunder-
standingabouttheprevalenceofAlzheimer’sdisease
and other dementias in different racial and ethnic
groupsandthefactorsthatareassociatedwithand
probablyaccountforsomeofthedifferencesin
prevalenceamongthesegroupsisessentialfor
addressingtheneedsofpeoplewiththeseconditions
andtheirfamiliesnowandinthefuture.
Understanding the Concepts of Race and Ethnicity
Raceandethnicityarecomplexconceptsthathave
differentmeaningstodifferentpeople.IntheU.S.
Census,mostnationalsurveysandallthestudiescited
inthisreport,raceandethnicityareself-reported—that
is, individuals identify their own race and ethnicity,
oftenfromalistofcategories.
MostoftheinformationinthisSpecialReportpertains
totwoverybroadracialgroups(whitesandAfrican-
Americans)andoneethnicgroup—Hispanics.Clearly,
eachofthesegroupsincludesmanysubgroups
definedbycountryorplaceoforigin,heritageand
otherfactors.Forexample,thebroadgroupreferredto
asHispanicsincludesAmericansofCaribbean,
MexicanandCentralandSouthAmericanorigin.
Availableinformationabouttheprevalenceof
Alzheimer’sdiseaseandotherdementiasinCaribbean-
andMexican-Americansispresentedinthereport.
Withineachofthethreebroadgroupsthereare
tremendous differences in the culture, language,
religionandlifeexperiencesofindividuals.These
differencesarealsoevidentwithinsubgroups,no
matterhownarrowlydefined.Thus,thefindings
presentedinthisreport,althoughusefulforthinking
about race, ethnicity, Alzheimer’s and other dementias,
cannotbeassumedtoapplytoanyparticularindividual
orevenanyparticularracialorethnicsubgroupunless
thefindingscomefromastudythatfocusedspecifi-
callyonthatsubgroup.
Prevalence of Cognitive Impairment in Older Whites, African-Americans and Hispanics
Findingsfromthe2006HRSsurveyprovideinforma-
tionabouttheprevalenceofcognitiveimpairmentin
thethreebroadracialandethnicgroupsthatarethe
mainfocusofthisSpecialReport—whites,African-
AmericansandHispanics.Asdescribedearlier,the
HRSsurveyisalarge-scalesurveyofanationally
representativesampleofolderAmericans.Thesurvey
isconductedbytelephoneorface-to-face.A15For
surveyparticipantswhoareabletorespondtothe
interview,thesurveyincludesa27-itemtestof
cognitiveabilities,includingmemoryandspeedof
mentalprocessing,andaskstheparticipanttoratehis
orherownmemory.Forsurveyparticipantswhoare
notabletorespondtotheinterview,aproxyrespon-
dent(usuallyafamilymember)respondsforthem.
Proxyrespondentsareaskedtoratethesurvey
participant’smemoryandhisorherabilitytoperform
2010 Alzheimer’s Disease Facts and Figures Special Report: Race, Ethnicity and Alzheimer’s Disease
50
dailyactivities.Thesurveyinterviewerisalsoaskedto
makeajudgmentaboutthesurveyparticipant’s
cognitiveability.Forthisreport,informationfromthese
different sources was combined to identify the
cognitivestatusofsurveyparticipants.A15
The2006HRSsurveyincludedmorethan16,000
participantsaged55andolder,representing68million
Americansinthatagegroup.(111)Thesurveypartici-
pantsidentifiedthemselvesortheirproxyrespondent
identifiedthemaswhite,African-American,Hispanic
oranotherracialorethnicgroup.AlthoughHispanics
canbeanyrace,theHRSparticipantswhoidentified
themselvesorwereidentifiedbytheirproxyrespon-
dentas“Hispanic”arecategorizedasbeinginthat
groupregardlessoftheirrace.Thus,forthisreport,
“whites”includeonlynon-Hispanicwhites,and
“African-Americans”includeonlynon-Hispanic
African-Americans.
FindingsfromtheHRSshowthatin2006,the
prevalenceofcognitiveimpairmentwas10.5percent
forAmericansaged65andolder,including8.8percent
forwhites,23.9percentforAfrican-Americansand
17.5percentforHispanics.(111) Figure 12 shows the
proportionofwhites,African-AmericansandHispanics
withcognitiveimpairmentforfouragegroups:55–64,
65–74,75–84and85andolder.
ThemoststrikingobservationfromFigure12isthe
relationshipbetweenageandtheprevalenceof
cognitiveimpairment.Acrossallthreeracialandethnic
groupsandforeachgroup,theprevalenceofcognitive
impairmentishigherinolderversusyoungerage
groups.
AsshowninFigure12,African-Americansare,on
average,twotothreetimesmorelikelythanwhitesto
havecognitiveimpairment,andthesedifferencesare
greaterintheyoungerthantheolderagegroups.
Amongpeopleaged55–64,forexample,African-
Americansarefourtimesmorelikelythanwhitesto
havecognitiveimpairment,butamongpeopleaged85
CreatedfromdatafromtheHealthandRetirementStudy,2006.(111),A15
Figure 12: Proportion of Americans Aged 55 and Older with Cognitive Impairment, by Race/Ethnicity, Health and Retirement Study, 2006, N=16,273
WhiteAfrican-AmericanHispanic
55–64 65–74 75–84 85+
60
50
40
30
20
10
0
Percent
Special Report: Race, Ethnicity and Alzheimer’s Disease 2010 Alzheimer’s Disease Facts and Figures
44.8
54.6
26.9
32.5
23.7
9.89.3
12.4
4.83.3 2.9
1.2
51
andolder,African-Americansareonlyabouttwotimes
morelikelythanwhitestohavecognitiveimpairment.
TheHRSfindingsshowthatHispanicsare,onaverage,
twotimesmorelikelythanwhitestohavecognitive
impairment,andthesedifferencesaregreaterinthe
youngerthanintheolderagegroups.Amongpeople
aged55–64,forexample,Hispanicsarealmostthree
timesmorelikelythanwhitestohavecognitive
impairment,butamongpeopleaged85andolder,
Hispanicsareonly1.6timesmorelikelythanwhites
tohavecognitiveimpairment.Ineachagegroup,
HispanicsarelesslikelythanAfrican-Americansto
havecognitiveimpairment.
AlthoughtheHRSfindingsshowninFigure12provide
informationaboutthenationalprevalenceofcognitive
impairmentinthethreebroadracialandethnicgroups,
itisnotclearhowcloselythesefindingsoncognitive
impairmentwouldmatchfindingsonthenational
prevalenceofAlzheimer’sdiseaseanddementiabyrace
andethnicity.Withtheexceptionofthefindingsfrom
ADAMSdiscussedbelow,suchfindingsdonotexist.
TwodifficultieslimitinterpretationoftheHRSfindings.
Thefirstisthataone-timemeasurementofcognitive
functioncannotrepresentthedeclineincognitionthat
isrequiredforadiagnosisofAlzheimer’sdiseaseand
otherdementias.Thesecondisthatindividualsin
variousracialandethnicgroupstendtodifferinways
thatcanaffecttheirperformanceoncognitivetests.For
the58percentofHRSsurveyparticipantswithcogni-
tiveimpairmentwhorespondedtotheinterviewfor
themselves, information about their cognitive status is
basedontheresultsofthe27-itemstandardized
cognitivetestthatispartofthesurvey.Many
researchersandcliniciansquestionwhethersuchtests
resultinvalidfindingsaboutcognitivestatus,especially
forpeoplewithloweducationandothersociodemo-
graphiccharacteristicsthatcouldaffecttheirperfor-
manceonthetest.Extensiveresearchhasbeen
conductedonthisissueoverthepast20years.(108,112-117)
Someresearchersandclinicianswhogenerallyaccept
the results of a brief mental status test as an indicator
ofcognitivestatusforresearchpurposesstillhave
concernsabouttheextenttowhichtheresultscanbe
usedtoidentifypeoplewithAlzheimer’sdiseaseand
otherdementias.
Concernsaboutthesetwodifficultiesininterpreting
theHRSfindingsarelegitimate.Studiesthathavebeen
conductedtotesttheextenttowhichthecognitivetest
usedintheHRSisavalidindicatorofcognitivestatus
andtheextenttowhichtheresultsofthistestcanbe
usedtoidentifypeoplewithAlzheimer’sandother
dementiasarediscussedintheAppendices.A15
Prevalence of Alzheimer’s Disease and Other Dementias in Older Whites, African-Americans and Hispanics
FindingsfromADAMSindicatethatAfrican-Americans
aged71andolderwerealmosttwotimesmorelikely
thanwhitesinthesameagegrouptohaveAlzheimer’s
diseaseorotherdementias(21.3percentofAfrican-
Americanscomparedwith11.2percentofwhites).(109)
ParticipantsinADAMSweredrawnfromtheHRSand,
withweighting,constituteanationallyrepresentative
sampleofAmericansinthatagegroup.(12)Each
ADAMSparticipantreceivedacomprehensive,
standardized evaluation for Alzheimer’s disease and
other dementias and a diagnosis by a committee of
expertdementiaclinicians.(12)TheADAMSsample
includedHispanics,butthenumberwastoosmallto
providevalidestimatesoftheprevalenceof
Alzheimer’sorotherdementiaforthatgroup.
TheExpertPanelconvenedbytheAlzheimer’s
AssociationtoprovideguidanceforthisSpecialReport
identifiedotherstudiesthat:1)provideinformation
abouttheprevalenceofAlzheimer’sdiseaseandother
dementiasinage-specificsubgroupsofolderpeople,
2)usedapopulation-basedsampleofpeoplefromone
ormoreracialorethnicgroupsintheUnitedStatesand
3)conductedastandardizedevaluationtoidentify
2010 Alzheimer’s Disease Facts and Figures Special Report: Race, Ethnicity and Alzheimer’s Disease
52
peoplewithAlzheimer’sandotherdementias.Only
onestudy,theWashingtonHeights-InwoodColumbia
AgingProject(WHICAP),metalltheExpertPanel’s
criteriaandreportedinformationabouttheprevalence
of Alzheimer’s and other dementias for whites,
African-AmericansandHispanics.(22)Severalother
studiesmettheExpertPanel’scriteriaandreported
informationaboutprevalenceforoneortworacialor
ethnicgroups.
FindingsfromWHICAPshowthattheprevalence
of Alzheimer’s disease and other dementias was
7.8percentinwhitesaged65andolder,18.8percent
inAfrican-Americansaged65andolderand
20.8percentinHispanicsaged65andolder.(22)
Acrossthethreegroupsandforeachgroup,the
prevalenceofAlzheimer’sandotherdementiasin
WHICAPwashigherinolderversusyoungerage
groups(Figure13).Intheagegroups75–84and85
andolder,African-Americanswereabouttwotimes
morelikelythanwhitestohaveAlzheimer’sandother
dementias,whereasintheagegroup65–74,African-
Americanswereaboutthreetimesmorelikelythan
whitestohaveAlzheimer’sandotherdementias.
Intheagegroups65–74and75–84,Hispanicswere
twoandahalftimesmorelikelythanwhitestohave
Alzheimer’sandotherdementias.Thedifferencewas
somewhatsmallerintheagegroup85andolder,
whereHispanicswereabouttwotimesmorelikely
thanwhitestohavetheseconditions.
Theoverallprevalencefiguresforwhitesand
African-Americansaged65andolderfromWHICAP
(7.8percentand18.8percent,respectively)are
somewhatlowerthanthefiguresforwhitesand
African-Americansaged71andolderfromADAMS
(11.2percentand21.3percent,respectively).This
difference is understandable, since the inclusion of
youngerpeople(thoseaged65to70)inthe
WHICAPsamplewouldbeexpectedtoresultinlower
Special Report: Race, Ethnicity and Alzheimer’s Disease 2010 Alzheimer’s Disease Facts and Figures
70
60
50
40
30
20
10
0
Figure 13: Proportion of People Aged 65 and Older with Alzheimer’s Disease and Other Dementias, by Race/Ethnicity, Washington Heights-Inwood Columbia Aging Project, 2006, N=2,162
65–74 75–84 85+
Percent
9.1
2.97.5
10.9
19.9
27.930.2
58.662.9
CreatedfromdatafromGurlandetal.(22)
WhiteAfrican-AmericanHispanic
53
prevalenceofAlzheimer’sandotherdementias.
Nevertheless,thefindingsfrombothstudiesshowthat
African-Americansareabouttwotimesmorelikely
thanwhitestohavetheseconditions.
FindingsfromotherstudiesthatmettheExpertPanel’s
criteriaandprovideinformationabouttheprevalenceof
Alzheimer’sandotherdementiasinspecificracialand
ethnicgroupsareasfollows:
•Astudyofapopulation-basedsampleofwhites
andAfrican-Americansinfourstates,Maryland,
NorthCarolina,PennsylvaniaandCalifornia,found
that8.9percentofwhitesunderage70had
Alzheimer’s disease and other dementias, increasing
to46.9percentofthoseaged85andolder.(15)
PrevalenceinAfrican-Americanswasabout1.6times
higherforallagegroupsinthestudysample.(118)
•Astudyofapopulation-basedsampleofAfrican-
AmericansinIndianapolis,Indiana,foundthat
2.6percentofthoseaged65–74hadAlzheimer’s
disease or other dementias, increasing to
32.4percentofthoseaged85andolder.(119)
•Astudyofapopulation-basedsampleofMexican-
AmericansinSacramento,California,foundthat
1.2percentofthoseaged65–74hadAlzheimer’s
disease or other dementias, increasing to
26.1percentofthoseaged85andolder.(120)
All the studies described above vary in many ways,
includingsamplecomposition,participationratesand
theprecisemethodsusedtoidentifypeoplewith
Alzheimer’sandotherdementias.Thisvariationmay
accountforsomeofthedifferencesintheirfindings
abouttheprevalenceofAlzheimer’sandother
dementias.
Oneimportantaspectofsamplecompositionis
whetherastudyincludesnursinghomeresidents.The
prevalenceofAlzheimer’sandotherdementiasishigh
innursinghomes(seeUseandCostsofCaresection),
andinclusionorexclusionofnursinghomeresidentsis
likelytohaveastrongeffectonstudyfindings.The
studyofAfrican-AmericansinIndianapolisincluded
nursinghomeresidentsandreportedfindingsabout
theprevalenceofAlzheimer’sandotherdementiasfor
samplememberswhowerelivinginthecommunity
andnursinghomesseparatelyaswellasforthe
sampleasawhole.Whilethedifferenceinprevalence
ofAlzheimer’sandotherdementiasforAfrican-
Americansaged65–74whowerelivinginthecommu-
nityversusinanursinghomeissmall(1.8percent
versus2.6percent),thedifferenceinprevalencefor
thoseaged85andolderislarge:17percentfor
African-Americanswhowerelivinginthecommunity
comparedwith76.3percentforthosewhowereliving
innursinghomes.(119)
Findings from the two studies described above
thatincludeHispanicsshowlargedifferencesinthe
prevalenceofAlzheimer’sandotherdementias,
especiallyintheagegroup85andolder.TheWHICAP
findingsshowthat62.9percentoftheHispanicsaged
85andolder,describedasmostlyCaribbean-
Americans, had Alzheimer’s and other dementias
comparedwithonly26.1percentoftheMexican-
AmericansintheSacramentostudy.(22,120) It is unclear
whetherthesedifferencesreflecttruedifferencesin
prevalenceamongsubgroupsofHispanics,differences
inthewaythetwostudieswereconductedorboth.
Oneadditionalgroupforwhichthereisinformation
abouttheprevalenceofAlzheimer’sandother
dementiasisJapanese-Americans.Onestudyof
Japanese-AmericansinSeattlefoundthatabout
1percentofthoseaged65–74hadAlzheimer’s
diseaseandotherdementias,increasingto30percent
ofthoseaged85–89,50percentofthoseaged90–94
and74percentofthoseaged95andolder.(121) Another
studyofJapanese-AmericanmeninHonolulufound
that3percentofthoseaged71–74hadAlzheimer’s
diseaseordementia,increasingto46.2percentof
thoseaged85andolder.(122)
2010 Alzheimer’s Disease Facts and Figures Special Report: Race, Ethnicity and Alzheimer’s Disease
54
Alzheimer’s Association Estimates of the Prevalence of Alzheimer’s Disease and Other Dementias in Whites, African- Americans and Hispanics
Findings from the studies discussed in this section
providearangeoffiguresfortheprevalenceof
Alzheimer’s disease and other dementias in different
racialandethnicgroups.Forthepurposesofthis
SpecialReport,themostusefulfindingscomefrom
ADAMS,becauseithadanationallyrepresentative
sample,andWHICAP,becauseitistheonlystudythat
hasreportedprevalenceinformationforthreemajor
racialandethnicgroupsintheUnitedStates.Basedon
thesefindings,theAlzheimer’sAssociationestimates
thatolderAfrican-Americansareabouttwotimes
morelikelythanolderwhitestohaveAlzheimer’s
diseaseandotherdementias.
ADAMSfindingsarenotavailableforHispanics,andas
discussedearlier,findingsfromWHICAPbasedona
sampleofmostlyCaribbean-Hispanicsshowamuch
higherprevalenceofAlzheimer’sandotherdementias
thanfindingsfromtheSacramentostudybasedona
sampleofMexican-Americans.Thefindingsfromthe
SacramentostudyareimportantbecauseMexican-
AmericansarethelargestgroupofHispanicsinthe
UnitedStates.TheHRSfindingsontheprevalenceof
cognitiveimpairmentdonotdifferentiatesubgroupsof
Hispanics.Buttheyshowthatamongpeopleaged65
andolder,Hispanicsweretwotimesmorelikelythan
whitestohavecognitiveimpairment(8.8percentand
17.5percent,respectively),withthedifference
decreasingwitholderage.Hispanicsaged65–74were
3.2timesmorelikelythanwhitestohavecognitive
impairment,whilethoseaged75–84were2.4times
morelikely,andthoseaged85andolderwereonly
1.6timesmorelikelythanwhitestohavecognitive
impairment.(111)Giventhesefindings,theAlzheimer’s
Association believes it is reasonable at this time to
estimatethatolderHispanicsareatleastoneanda
halftimesmorelikelythanolderwhitestohave
Alzheimer’sandotherdementias.
TheHRSfindingsoncognitiveimpairmentinpeople
aged55–64showlargedifferencesamongwhites,
African-AmericansandHispanics.Amongpeopleaged
55–64,African-Americanswerefourtimesmorelikely
thanwhitestohavecognitiveimpairment.Hispanicsin
thisagegroupwerealmostthreetimesmorelikely
thanwhitestohavecognitiveimpairment.Noinforma-
tionisavailableabouttheprevalenceofAlzheimer’s
diseaseandotherdementiasinpeopleunderage65
fromstudiesthathaveusedapopulation-based
sample.OnestudyofwhitesandHispanicswith
Alzheimer’s or other dementia who were evaluated at
fivespecializedmedicalcentersacrossthecountry
foundthattheaverageageofsymptomonsetwas
6.8yearsearlierforHispanicsthanforwhites.(123) More
researchisclearlyneededtoaddressquestionsabout
theprevalenceofAlzheimer’sandotherdementiasin
white,African-AmericanandHispanicpeopleunder
age65,aswellasquestionsaboutprevalencein
subgroupsoftheHispanicpopulationandmanyother
racialandethnicgroupsintheUnitedStatesforwhich
noprevalenceinformationiscurrentlyavailable.
Relationship of Genetic Factors and Prevalence of Alzheimer’s Disease and Dementia in Different Racial and Ethnic Groups
AsdiscussedintheOverview,asmallpercentageof
Alzheimer’s disease cases are caused by rare genetic
mutationsthatarefoundinafewfamiliesworldwide.
Individualswhoinheritthesemutationsoftenexperi-
encetheonsetofAlzheimersymptomsbeforeage65,
someasearlyasage30.Giventherelativelysmall
numberofpeopleworldwidewhoareknowntohave
inheritedthesegeneticmutations,itisunlikelythatthe
mutationsareresponsibleforthegreaterprevalenceof
Alzheimer’sandotherdementiasinAfrican-Americans
andHispanics.
Ageneticfactorthatisassociatedwithlate-onset
Alzheimer’sdiseaseisapolipoproteinE(ApoE).People
Special Report: Race, Ethnicity and Alzheimer’s Disease 2010 Alzheimer’s Disease Facts and Figures
55
inheritoneformoftheApoEgenefromeachparent.
Thosewhoinheritthee4formoftheApoEgenefrom
oneparenthaveanincreasedriskofdeveloping
Alzheimer’sdisease.Thosewhoinheritthee4formof
thegenefrombothparentshaveanevenhigherrisk.
TherelationshipbetweenApoE-e4andAlzheimer’s
diseasehasbeenstudiedinwhite,African-American,
HispanicandotherpopulationsintheUnitedStates
andaroundtheworld.Awidelycitedmeta-analysis
thatcombinedfindingsfrom5,930peoplewith
Alzheimer’sdiseaseand8,607withoutthedisease
showedthatwhiteswhoinheritedthee4formofthe
ApoEgenefromoneparenthada3.2timesgreater
riskofdevelopingAlzheimer’sdiseasethanwhites
who did not inherit this form of the gene from one
parent.(124)Hispanicswhoinheritedthee4formofthe
ApoEgenefromoneparenthada2.2timesgreater
riskofdevelopingAlzheimer’sdiseasethanHispanics
who did not inherit this form of the gene from one
parent.TheriskofAlzheimer’sdiseasewas14.9times
higherforwhiteswhoinheritedthee4formofthe
ApoEgenefrombothparentsand5.7timeshigherfor
African-Americanswhoinheritedthee4formofthe
genefrombothparents.Ontheotherhand,African-
Americanswhoinheritedthee4formoftheApoE
genefromoneparentandHispanicswhoinheritedthe
e4formofthegenefrombothparentsdidnothavean
increasedriskfordevelopingAlzheimer’sdisease.(124)
Thus,therelationshipbetweeninheritanceofthee4
formoftheApoEgeneandthedevelopmentof
Alzheimer’sdiseaseinAfrican-AmericanandHispanic
populationsisambiguous.
Research on genetic factors in Alzheimer’s and other
dementiasisimportantbecauseitincreasesour
understandingofthecausesoftheseconditions.As
such research continues to evolve, additional genetic
factors in Alzheimer’s and other dementias will
undoubtedlybediscovered.Atthistime,however,the
relativelysmallnumberofpeopleworldwidewhohave
theknowngeneticmutationsthatcauseAlzheimer’s
disease,theambiguityoffindingsabouttheimpactof
inheritingthee4formoftheApoEgeneonAfrican-
AmericansandHispanics,andtheimplicationfromthe
meta-analysisfindingsthatinheritanceofthee4form
mayhavelessimpactonAfrican-Americansand
Hispanicsthanonwhitesallsuggestthatthesegenetic
factorsprobablydonotaccountforthegreaterpreva-
lenceofAlzheimer’sandotherdementiasinAfrican-
AmericansandHispanics.
Relationship of Certain Diseases and Prevalence of Alzheimer’s Disease and Dementia in Different Racial and Ethnic Groups
Highbloodpressure,heartdisease,diabetesandstroke
areknownriskfactorsforAlzheimer’sdiseaseandother
dementias.(114,125-134)Somepeoplehavemorethanoneof
thefourdiseases,andtheyareatevengreaterriskof
developingAlzheimer’sandotherdementias.(135)
FindingsfromtheHRSshowthatthesefourdiseasesare
morecommoninpeoplewithcognitiveimpairmentthan
inpeoplewithnormalcognition,regardlessofraceor
ethnicity(Table11,page56).Forexample,highblood
pressurewasmorecommoninpeopleaged55andolder
withcognitiveimpairmentthaninthosewithnormal
cognition in each of the three broad racial and ethnic
groups.(111)Amongwhites,61percentofthosewith
cognitiveimpairmenthadhighbloodpressure,compared
with52percentofthosewithnormalcognition.Likewise,
amongAfrican-Americans,80percentofthosewith
cognitiveimpairmenthadhighbloodpressure,compared
with69percentofthosewithnormalcognition.For
Hispanics,68percentofthosewithcognitiveimpairment
hadhighbloodpressure,comparedwith52percentof
thosewithnormalcognition.(111)
Thesamerelationshipbetweencognitivestatusandthe
presenceorabsenceofaparticulardiseaseistruefor
heartdisease,diabetesandstrokeinallthreeracialand
ethnicgroups(Table11,page56).
2010 Alzheimer’s Disease Facts and Figures Special Report: Race, Ethnicity and Alzheimer’s Disease
56
Theconsistentrelationshipofcognitiveimpairment
andthepresenceofhighbloodpressure,heart
disease,diabetesandstroke,allofwhichareknown
riskfactorsforAlzheimer’sdiseaseandotherdemen-
tias,doesnotholdtrueforotherdiseases.One
exampleiscancer.AsshowninTable11,cancerwas
notuniformlymorecommoninpeoplewithcognitive
impairmentthaninthosewithnormalcognitionacross
thethreeracialandethnicgroups.(111)
Inadditiontotheconsistentrelationshipofcognitive
impairmentandhighbloodpressure,heartdisease,
diabetesandstroke,theHRSfindingsinTable11
showthathighbloodpressurewasmorecommon
inAfrican-Americansoverallthaninwhitesand
Hispanics(72percent,54percentand55percent,
respectively).(111) Diabetes was more common in
African-AmericansandHispanicsoverallthanin
whites(31percent,29percentand17percent,
respectively).(111)Incontrast,intheHRSfindings,
heart disease was more common in whites overall
thaninAfrican-AmericansandHispanics(26percent,
24percentand17percent,respectively).Itispossible
thatsomeofthesefindingsareduetodifferences
acrossracialandethnicgroupsinaccesstohealthcare
and,morespecifically,diagnosticevaluation.Inthe
HRS,thepresenceofdiseasesisbasedonself-report
orthereportofaproxyrespondent,soitisalso
possiblethatsomeofthefindingsareduetodiffer-
encesacrossracialandethnicgroupsinawarenessof
orwillingnesstoreportcertaindiseases.Asshownin
Table 11, cancer was more common in whites overall
thaninAfrican-AmericansandHispanics(16percent,
11percentand9percent,respectively),eventhough
other sources show that many cancers are more
Race/Ethnicity and Cognitive Status
Table 11: Percentage of Americans Aged 55 and Older with Selected Diseases by Race/Ethnicity and Cognitive Status, Health and Retirement Study, 2006
White
All 54 26 17 7 16
Withnormalcognition 52 13 16 5 15
Withcognitiveimpairment 61 41 20 27 14
African-American
All 72 24 31 11 11
Withnormalcognition 69 19 30 8 10
Withcognitiveimpairment 80 36 33 25 13
Hispanic
All 55 17 29 6 9
Withnormalcognition 52 15 26 4 7
Withcognitiveimpairment 68 24 39 17 14
CreatedfromdatafromtheHealthandRetirementStudy,2006.(111)
Disease
High Blood Pressure Heart Disease Diabetes Stroke Cancer N=9,744 N=4,468 N=3,463 N=1,361 N=2,519
Special Report: Race, Ethnicity and Alzheimer’s Disease 2010 Alzheimer’s Disease Facts and Figures
57
commoninAfrican-Americansthaninwhites.(136)
Despitethesecaveats,however,itisclearthathigh
bloodpressureismorecommoninAfrican-Americans
overallanddiabetesismorecommoninbothAfrican-
AmericansandHispanicscomparedwithwhites,and
itislikelythatthegreaterprevalenceofthesecondi-
tionsinAfrican-AmericansandHispanicsthanin
whites accounts for at least some of the differences
amongthesegroupsinprevalenceofAlzheimer’sand
otherdementias.
Highbloodpressureanddiabetesaretreatable
conditions, and many researchers and clinicians have
proposedthattreatmentofthesediseases,especially
ifitwerebeguninpeoplewhohavetheconditionsin
midlife,couldreducetheprevalenceofAlzheimer’s
andotherdementias.(29,127,129-130,134,137)Sincethese
diseasesaremorecommoninAfrican-Americansand
Hispanics,effectivetreatmentofthesepotentially
modifiableconditionscouldbeespeciallybeneficialfor
African-AmericansandHispanics.
Relationship of Socioeconomic Characteristics and Prevalence of Alzheimer’s Disease and Other Dementias in Different Racial and Ethnic Groups
Havingalowlevelofeducation,havinglowincome
and having lived in a rural area as a child are socioeco-
nomic characteristics that have been found to be
associatedwithgreaterriskofdevelopingAlzheimer’s
diseaseandotherdementias.(16,23-24,111-112,114,121,138)
Individuals with more than one of these characteristics
possessanevengreaterriskofdevelopingthese
conditions.(139)
Somestudiesindicatethatitisnotonlylowlevelof
educationbutalsopoorerqualityofeducationthatis
associatedwithgreaterriskofdevelopingAlzheimer’s
andotherdementias.ForAfrican-Americansatleast,
havinglivedinaruralareaasachildmaybeaproxyfor
havingreceivedapoorerqualityofeducation.One
studyofAfrican-Americansaged65andolderfound
that both low educational level and having lived in a
ruralareauntilage60wereindependentlyassociated
withgreaterriskofdevelopingAlzheimer’sandother
dementias.(138) Another study conducted in the same
sampleofolderAfrican-Americansfoundthattherisk
ofdevelopingAlzheimer’sandotherdementiaswassix
times greater for those who had a low educational
level and had lived in a rural area as a child than for
those who had a low educational level but had lived in
anurbanareaasachild.(139) A third study found that
olderpeoplewhosaidtheirschoolperformancewas
belowaveragewere4.5timesmorelikelythanolder
peoplewhosaidtheirschoolperformancewas
average or above average to have Alzheimer’s disease
or other dementias, even after adjustment for years of
education.(140)
FindingsfromtheHRSshowthathavingalowlevelof
education, having low income and having lived in a
rural area as a child, all of which are associated with
greaterriskofdevelopingAlzheimer’sandother
dementias,aremorecommoninpeoplewithcognitive
impairmentthaninpeoplewithnormalcognition,
regardlessofraceorethnicity(Table12,page58).
Amongwhiteswithcognitiveimpairment,47percent
hadlessthan12yearsofeducation,comparedwith
only11percentofthosewithnormalcognition.(111)
Likewise,amongAfrican-Americans,76percentof
thosewithcognitiveimpairmenthadlessthan
12yearsofeducation,comparedwithonly21percent
ofthosewithnormalcognition,andforHispanics,
89percentofthosewithcognitiveimpairmenthad
lessthan12yearsofeducation,comparedwithonly
49percentofthosewithnormalcognition.(111)
Thesamerelationshipbetweencognitivestatusand
thepresenceorabsenceofasocioeconomiccharac-
teristic that has been shown to be associated with
Alzheimer’s and other dementias is also true for having
incomebelow$18,000ayearandhavinglivedina
ruralareabeforeage16(Table12).(111)
2010 Alzheimer’s Disease Facts and Figures Special Report: Race, Ethnicity and Alzheimer’s Disease
58
Theconsistentrelationshipofcognitiveimpairmentand
having a low level of education, having low income and
having lived in a rural area as a child, all of which have
beenfoundtobeassociatedwithgreaterriskfor
developingAlzheimer’sandotherdementias,doesnot
holdtrueforothersocioeconomiccharacteristics.One
exampleisthecharacteristicofhavingbeenborninthe
UnitedStates.Thischaracteristicwasnotuniformly
morecommoninpeoplewithcognitiveimpairmentthan
in those with normal cognition across the three racial
andethnicgroups(Table12).(111)
Inadditiontotheconsistentrelationshipacrossracial
andethnicgroupsbetweencognitiveimpairment
and the three socioeconomic characteristics that
havebeenfoundtobeassociatedwithgreaterrisk
fordevelopingAlzheimer’sdiseaseandotherdemen-
tias,theHRSfindingsinTable12showthattwoof
these three characteristics were more common in
African-AmericansandHispanicsthaninwhites.(111)
Theexceptionishavinglivedinaruralareaasachild.
Itispossiblethatthegreaterprevalenceoftheothertwo
characteristicsinAfrican-AmericansandHispanicsthan
in whites accounts for at least some of the differences
amongthesegroupsinprevalenceofAlzheimer’sand
otherdementias.
Diagnosis of Alzheimer’s Disease and Other Dementias in Different Racial and Ethnic Groups
Severalstudiesconductedinclinicalsettingsindicatethat
African-AmericansandHispanicswithAlzheimer’sdisease
orotherdementiasarelesslikelythanwhitestohavebeen
diagnosedwiththecondition.(141-142)Althoughfocusgroups
andindividualresearchinterviewsindicatethatAfrican-
American family members recognize the value of having a
diagnosis, long delays often occur between family
members’firstrecognitionofsymptomsofAlzheimer’s
Table 12: Percentage of Americans Aged 55 and Older with Selected Socioeconomic Characteristics by Race/Ethnicity and Cognitive Status, Health and Retirement Study, 2006
White
All 16 18 45 96
Withnormalcognition 11 14 43 96
Withcognitiveimpairment 47 48 50 93
African-American
All 37 43 50 95
Withnormalcognition 21 29 44 95
Withcognitiveimpairment 76 74 68 97
Hispanic
All 60 48 43 55
Withnormalcognition 49 38 40 56
Withcognitiveimpairment 89 76 57 56
CreatedfromdatafromtheHealthandRetirementStudy,2006.(111)
Socioeconomic Characteristics
Level of Education Income Below Lived in a Rural Was Born in Below 12 Years $18,000 a Year Area before Age 16 the United States N=4,181 N=4,118 N=7,045 N=14,805
Race/Ethnicity and Cognitive Status
Special Report: Race, Ethnicity and Alzheimer’s Disease 2010 Alzheimer’s Disease Facts and Figures
59
and other dementias and the scheduling of a medical
evaluation.(107,141,143-144)Thesameistrueforpeoplein
otherracialandethnicminoritygroups.(107,142,145)
Findingsfromthe2006HRSsurveyprovidesome
supportfortheconclusionthatAfrican-Americansand
HispanicswithAlzheimer’sdiseaseandotherdemen-
tiasarelesslikelythanwhiteswiththeseconditionsto
havebeendiagnosed.ThefindingsshowthatAfrican-
AmericansandHispanicswithcognitiveimpairment
arelesslikelythanwhiteswithcognitiveimpairmentto
report(ortheirproxyrespondentsarelesslikelyto
report)thataphysicianhassaidthepersonhas“a
memory-relateddisease.”(111)TheHRSfindingsshow
that46percentofwhitesaged55andolderwith
cognitiveimpairment(ortheirproxyrespondents)
reportedthataphysicianhassaidthepersonhada
“memory-relateddisease,”comparedwith33percent
ofAfrican-Americanswithcognitiveimpairmentand34
percentofHispanicswithcognitiveimpairment.(111)
Thesefindingsmaybeduetoagreaterwillingness
amongwhiteswithcognitiveimpairmentortheirproxy
respondentstoreportadiagnosis,buttheyprobably
alsoreflectagreaterlikelihoodthatwhiteswith
cognitiveimpairmenthavebeendiagnosed.
NewMedicaredata,whicharebasedondiagnostic
codesusedonMedicareclaims,showthatin2006,
9.9percentofMedicarebeneficiariesaged65and
olderhadaclaims-baseddiagnosisofAlzheimer’s
diseaseorotherdementia.(146),A16Theproportions
varied,however,forwhite,African-American,Hispanic
andotherMedicarebeneficiaries.Amongwhite
Medicarebeneficiaries,9.6percenthadaclaims-based
diagnosisofAlzheimer’sorotherdementia,compared
with12.7percentofAfrican-AmericanMedicare
beneficiariesand14percentofHispanicMedicare
beneficiaries.(146)
AlthoughthesenewMedicaredatashowthatAfrican-
AmericanandHispanicMedicarebeneficiarieswere
somewhatmorelikelythanwhitebeneficiariestohave
aclaim-baseddiagnosisofAlzheimer’sandother
dementias, the differences are not as great as one
wouldexpectbasedontheprevalencefigures
presentedinthisSpecialReport.Inparticular,thereport
estimatesthatolderAfrican-Americansaretwotimes
morelikelythanolderwhitestohaveAlzheimer’sandother
dementias, whereas the new Medicare data show that
African-Americanbeneficiarieswereonly32percentmore
likelythanwhiteMedicarebeneficiariestohaveaclaims-
based diagnosis of Alzheimer’s or other dementia
(12.7percentversus9.6percent,respectively).(146)
Likewise,thisreportestimatesthatolderHispanicsareat
leastoneandahalftimesmorelikelythanolderwhitesto
have Alzheimer’s and other dementias, whereas the new
MedicaredatashowthatHispanicbeneficiarieswereonly
46percentmorelikelythanwhiteMedicarebeneficiariesto
haveaclaims-baseddiagnosisofAlzheimer’sorother
dementia(14percentversus9.6percent,respectively).(146)
Thus, even though the new Medicare data show that older
African-AmericansandHispanicsaresomewhatmorelikely
thanolderwhitestohaveaclaims-baseddiagnosisof
Alzheimer’sandotherdementias,theyprobablystillreflect
substantial underdiagnosis of these conditions in older
African-AmericansandHispanics.
Medicaredatafor2006arealsoavailablefortwoother
racialandethnicgroups,Asian-AmericansandNorth
AmericanNatives.AmongAsian-AmericanMedicare
beneficiariesaged65andolder,8.1percenthadaclaims-
based diagnosis of Alzheimer’s disease or other dementia
in2006.(146)AmongNorthAmericanNativeMedicare
beneficiaries,9percenthadaclaims-baseddiagnosisof
Alzheimer’sorotherdementiain2006.(146)
Manyreasonshavebeenproposedforthedifferent
proportionsofpeoplewithAlzheimer’sandotherdemen-
tiasindifferentracialandethnicgroupswhohavea
diagnosis.Thesereasonsincludethecostoftheevalua-
tion,lackofinsurancecoveragefortheevaluation,general
distrustofdoctorsandmedicalclinics,fearthattheperson
will lose insurance coverage or his or her driver’s license
andperceptionsthatAlzheimer’sandotherdementiasare
anormalconsequenceofaging.(107,141-142,144-145) One study
foundthatolderpeoplewithAlzheimer’sandother
dementiaswholivedalonewerelesslikelytohavea
diagnosisthanotherolderpeoplewiththeseconditions
wholivedwithacaregiver.(147)
2010 Alzheimer’s Disease Facts and Figures Special Report: Race, Ethnicity and Alzheimer’s Disease
60
Table 13: Use of and Medicare Payments for Healthcare Services for Medicare Beneficiaries Aged 65 and Older with a Dementia Diagnosis, by Race/Ethnicity, 2006
TotalaverageMedicarepaymentperbeneficiary $15,333 $14,498 $21,044 $19,933
AverageMedicarepaymentforhospitalcareperbeneficiary $4,964 $4,563 $7,687 $6,632
Averagehospitaldischargesper1,000beneficiaries 660 632 887 731
Averagenumberofhospitaldaysperbeneficiary 4.2 3.9 6.4 5.2
AverageMedicarepaymentforphysicianvisitsperbeneficiary $1,018 $956 $1,390 $1,411
Averagenumberofphysicianvisitsperbeneficiary 12.7 12.1 16.4 17.1
AverageMedicarepaymentforhomehealthcareperbeneficiary $1,118 $1,025 $1,591 $2,453
Percentageofbeneficiarieswithatleastonehomehealthclaim 18.8% 18.2% 22.1% 25.9%
AverageMedicarepaymentforhospiceperbeneficiary $1,732 $1,789 $1,514 $1,225
Percentageofbeneficiarieswithatleastonehospiceclaim 13.7% 14.2% 11.3% 8.8%
CreatedfromdatafromAlzheimer’sAssociation,Characteristics, Costs and Health Service Use for Medicare Beneficiaries with a Dementia Diagnosis: Report 2: National 20% Sample Medicare Fee-for-Service Beneficiaries,2009.(84)
Medicare Beneficiaries Aged 65 and Older with Alzheimer’s Disease or Other Dementias
African- White American Hispanic All Beneficiaries Beneficiaries BeneficiariesMedicare Services and Payments
Special Report: Race, Ethnicity and Alzheimer’s Disease 2010 Alzheimer’s Disease Facts and Figures
61
Use and Costs of Medical Services for Different Racial and Ethnic Groups
UseandcostsofMedicare-fundedmedicalservices
aresubstantiallyhigherforAfrican-Americanand
HispanicMedicarebeneficiariesaged65andolder
withaclaims-baseddiagnosisofAlzheimer’s
disease or other dementias than for white Medicare
beneficiarieswithaclaims-baseddiagnosisofthese
conditions.(84)AsshowninTable13,totalperbenefi-
ciaryMedicarepaymentsforAfrican-Americanswitha
claims-baseddiagnosisofAlzheimer’sdiseaseorother
dementiaswere45percenthigherthanforwhites
withsuchadiagnosis($21,044comparedwith
$14,498).(84)Likewise,totalperbeneficiaryMedicare
paymentsforHispanicswithaclaims-baseddiagnosis
ofAlzheimer’sorotherdementiaswere37percent
higherthantotalperbeneficiarypaymentsforwhites
withthesuchadiagnosis($19,933comparedwith
$14,498).(84)Table13alsoshowsthattheuseandcosts
ofMedicare-fundedhospital,physicianandhome
healthservicesaresubstantiallyhigherforAfrican-
AmericanandHispanicbeneficiariesthanforwhite
beneficiaries.
Thereasonsforthesediscrepanciesareunknown,but
giventhelowerproportionofAfrican-Americansand
HispanicswithAlzheimer’sandotherdementiaswho
havebeendiagnosed,itispossiblethattheAfrican-
AmericanandHispanicMedicarebeneficiarieswhohave
aclaims-baseddiagnosisofAlzheimer’sorotherdemen-
tias in these Medicare data are, on average, in a more
advanced stage of Alzheimer’s or other dementia than
thewhitebeneficiarieswithsuchadiagnosis,and
thereforearemorecognitivelyandphysicallyimpaired.
Asaresult,itislogicalthattheywouldbemorelikely
thanthewhitebeneficiariestorequirehospital,physician
andotherMedicare-coveredmedicalservices.
OneexceptiontothehigheruseandcostsofMedicare-
fundedservicesbyAfrican-AmericanandHispanic
beneficiariesthanwhitebeneficiariesishospicecare.
AsshowninTable13,whiteMedicarebeneficiariesare
morelikelytousehospicecarethanAfrican-American
andHispanicbeneficiaries,andtheaverageMedicare
paymentforhospiceperbeneficiaryishigherforwhite
beneficiariesthanforAfrican-AmericanandHispanic
beneficiaries.(84)AnotherexceptionisuseofAlzheimer
medications.Atleasttwostudieshavefoundthatwhite
peoplewithAlzheimer’sdiseasearemorelikelytouse
Alzheimer’smedicationsthanAfrican-Americanand
Hispanicpeoplewiththeseconditions.(148-149)
2010 Alzheimer’s Disease Facts and Figures Special Report: Race, Ethnicity and Alzheimer’s Disease
62
End Notes
A1.ProportionofAmericanswithAlzheimer’sdisease: The 13percentiscalculatedbydividingthenumberofpeopleaged 65andolderwithAlzheimer’sdisease(5.1million)bytheU.S.populationaged65andolderin2008,thelatestavailabledata fromtheU.S.CensusBureau(38million)=13percent.Thirteenpercentisthesameas1in8.
A2.NumberofsecondsfordevelopmentofanewcaseofAlzheimer’s disease: The 70 seconds number is calculated by dividingthenumberofsecondsinayear(31,536,000)bythenumberofnewcasesestimatedfor2010(454,000),whichequalsanewcaseevery69.5seconds,roundedto70seconds.SeeHebert,LE;Beckett,LA;Scherr,PA;Evans,DA.“AnnualincidenceofAlzheimer’sdiseaseintheUnitedStatesprojectedtotheyears2000through2050.”Alzheimer’s Disease and Associated Disorders 2001;15:169–173.Usingthesamesourceandmethodofcalculationfor2050—31,536,000secondsdividedbyanestimated959,000newcases—resultsin32.8seconds,roundedto33seconds.
A3.CriteriaforidentifyingsubjectswithAlzheimer’sdiseaseandotherdementiasintheFraminghamStudy:Standarddiagnosticcriteria(DSMIVcriteria)wereusedtodiagnosedementiaintheFraminghamStudy,but,inaddition,thesubjectshadtohaveatleast“moderate”dementiaaccordingtotheFraminghamcriteria,whichisequivalenttoascoreof1ormoreontheClinicalDementiaRatingScale(CDR),andtheyhadtohavesymptomsforsixmonthsormore.Standarddiagnosticcriteria(theNINCDS-ADRDAcriteria)wereusedtodiagnoseAlzheimer’sdisease.TheexaminationfordementiaandAlzheimer’sdiseaseisdescribedindetailinSeshadri,S;Wolf,PA;Beiser,A;Au,R;McNulty,K;White,R;etal.“LifetimeriskofdementiaandAlzheimer’sdisease:TheimpactofmortalityonriskestimatesintheFraminghamStudy.”Neurology 1997;49:1498–1504.
A4.NumberofbabyboomerswhowilldevelopAlzheimer’sdiseaseand other dementias:ThenumbersforremaininglifetimeriskofAlzheimer’s disease and other dementias for baby boomers were developedbytheAlzheimer’sAssociationbyapplyingthedataprovidedtotheAssociationonremaininglifetimeriskbyAlexaBeiser,Ph.D.;SudhaSeshadri,M.D.;RhodaAu,Ph.D.;andPhilipA.Wolf,M.D.,fromtheDepartmentsofNeurologyandBiostatistics,BostonUniversitySchoolsofMedicineandPublicHealthtoU.S.Censusdataforthenumberofwomenandmenaged43to61inNovember2007,usedheretoestimatethenumberofwomenandmenaged44–62in2008.
A5.State-by-stateprevalenceofAlzheimer’sdisease: These state-by-stateprevalencenumbersarebasedonincidencedatafromtheChicagoHealthandAgingProject(CHAP),projectedtoeachstate’spopulation,withadjustmentsforstate-specificgender,yearsofeducation,raceandmortality.SeeHebert,LE;Scherr,PA;Bienias,JL;Bennett,DA;EvansDA.“State-specificprojectionsthrough2025ofAlzheimer’sdiseaseprevalence.”Neurology 2004;62:1645.ThenumbersinTable2arefoundinonlinematerialrelatedto this article at www.neurology.org.
A6.NumberoffamilyandotherunpaidcaregiversofpeoplewithAlzheimer’s and other dementias: To calculate this number, the Alzheimer’sAssociationstartedwithdatafromtheBehavioralRiskFactorSurveillanceSystem(BRFSS).In2000,theBRFSSsurveyaskedrespondentsage18andoverwhethertheyhadprovidedanyregularcareorassistanceduringthepastmonthtoafamilymemberorfriendage60orolderwhohadalong-termillnessordisability.Todeterminethenumberoffamilyandotherunpaid
caregiversnationallyandbystate,weappliedtheproportionofcaregiversnationallyandforeachstatefromthe2000BRFSS(asreportedinMcKune,SL;Andresen,EM;Zhang,J;Neugaard,B.Caregiving: A National Profile and Assessment of Caregiver Services and Needs. UniversityofFloridaandRosalynnCarterInstitute,2006)tothenumberofpeopleage18andoldernationallyandineachstatefromtheU.S.CensusBureaureportforJuly2009accessed at http://www.census.gov/popest/states/asrh/files/SCPRC-EST2009-18+POP-RES.csvonJan.12,2010.TocalculatetheproportionoffamilyandotherunpaidcaregiversthatprovidescareforapersonwithAlzheimer’soranotherdementia,weuseddatafromafollow-upanalysisofresultsfromanationaltelephonesurveyconductedin2009fortheNationalAllianceforCaregiving(NAC)andAARP(dataprovidedundercontractwithMatthewGreenwaldandAssociates,Nov.11,2009).TheNAC/AARPsurveyaskedrespondentsage18andoverwhethertheywereprovidingunpaidcareforarelativeorfriendage18orolderorhadprovidedsuchcareduringthepast12months.Respondentswhoansweredaffirmativelywerethenaskedaboutthehealthproblemsofthepersonforwhomtheyprovidedcare.Inresponse,32%ofcaregiversofpeopleage60oroldersaidthat:1)Alzheimer’sordementiawasthemainproblemofthepersonforwhomtheyprovidedcare,or2)thepersonhadAlzheimer’sorothermentalconfusioninadditiontohisorhermainproblem.Weappliedthe32%figuretothetotalnumberofcaregiversofpeopleage60andoldernationallyandineachstate.
A7.Numberofhoursofunpaidcare: To calculate this number, the Alzheimer’sAssociationuseddatafromafollow-upanalysisofresultsfromthe2009NAC/AARPnationaltelephonesurvey(dataprovidedundercontractbyMatthewGreenwaldandAssociates,Nov.11,2009).ThesedatashowthatcaregiversofpeoplewithAlzheimer’sandotherdementiasprovidedanaverageof21.9hoursaweekofcare,or1,139hoursperyear.Wemultipliedthenumberoffamilyandotherunpaidcaregivers(10,987,887)bytheaveragehoursofcareperyear(1,139),whichequals12,513,005,548hoursofcare.
A8.Valueofunpaidcaregiving: To calculate this number, the Alzheimer’sAssociationusedthemethodofArnoetal.(seeArno,PS;Levine,C;andMemmott,MM.“Theeconomicvalueofinformalcaregiving.”Health Affairs1999;18:182-188).Thismethodusestheaverageoftheminimumhourlywage($6.55forJuly1,2009)andthemeanhourlywageofhomehealthaides($16.44inJuly2009)(see,U.S.DepartmentofLabor,BureauofLaborStatistics.“Employment,Hours,andEarningsfromCurrentEmploymentStatisticsSurvey,”Series10-CEU6562160008,HomeHealthCareServices[NAICScode6216],AverageHourlyEarnings,July2009,accessedathttp://data.bls.gov/cesonDec.4,2009).Theaverageis$11.50.Wemultipliedthenumberofhoursofunpaidcareby$11.50,whichequals$143,899,563,806.
A9.MedicareCurrentBeneficiarySurveyReport: These data come fromananalysisoffindingsfromthe2004MedicareCurrentBeneficiarySurvey(MCBS).TheanalysiswasconductedfortheAlzheimer’sAssociationbyJulieBynum,MD,MPH,DartmouthInstituteforHealthPolicyandClinicalCare,CenterforHealthPolicyResearch.TheMCBSisacontinuoussurveyofanationallyrepresentativesampleofabout16,000MedicarebeneficiarieswhichislinkedtoMedicarePartBclaims.ThesurveyissupportedbytheU.S.CentersforMedicareandMedicaidServices(CMS). Forcommunity-dwellingsurveyparticipants,MCBSinterviewsareconductedinpersonthreetimesayearwiththeMedicare
Appendices 2010 Alzheimer’s Disease Facts and Figures
63
beneficiaryoraproxyrespondentifthebeneficiaryisnotabletorespond.Forsurveyparticipantswhoarelivinginanursinghomeoranother residential care facility, such as an assisted living residence, retirementhomeoralong-termcareunitinahospitalormentalhealthfacility,MCBSinterviewsareconductedwithanursewhoisfamiliarwiththesurveyparticipantandhisorhermedicalrecord.DatafromtheMCBSanalysisthatareincludedin2010 Alzheimer’s Disease Facts and FigurespertainonlytoMedicarebeneficiariesaged65andolder.ForthisMCBSanalysis,peoplewithdementiaaredefinedas:
•Community-dwellingsurveyparticipantswhoansweredyestotheMCBSquestion,“HasadoctorevertoldyouthatyouhadAlzheimer’sdiseaseordementia?”Proxyresponsestothisquestionwereaccepted.
•Surveyparticipantswhowerelivinginanursinghomeorotherresidential care facility and had a diagnosis of Alzheimer’s disease ordementiaintheirmedicalrecord.
•SurveyparticipantswhohadatleastoneMedicareclaimwithadiagnostic code for Alzheimer’s disease or other dementia in 2004.TheclaimcouldbeforanyMedicareservice,includinghospital,skillednursingfacility,outpatientmedicalcare,homehealthcare,hospiceorphysicianorotherhealthcareprovidervisit.ThediagnosticcodesusedtoidentifysurveyparticipantswithAlzheimer’sdiseaseandotherdementiasare331.0,331.1,331.11,331.19,331.2,331.7,331.82,290.0,290.1,290.10,290.11,290.12,290.13,290.20,290.21,290.3,290.40,290.41,290.42,290.43,291.2,294.0,294.1,294.10and290.11.
A10.Medicare:MedicareisamedicalinsuranceprogramavailabletoallAmericansaged65andolderandtoalimitednumberofyoungerindividualswhomeettherequirementsforSocialSecurityDisabilityInsurance(SSDI).In2007,95percentofpeopleaged65andolderhadMedicare(U.S.DepartmentofHealthandHumanServices,Health Care Financing Review: Medicare and Medicaid Statistical Supplement, Brief Summaries of Medicare and Medicaid, November1,2008).Original,fee-for-serviceMedicarecovershospitalcare;physicianservices;homehealthcare;laboratoryandimagingtests;physical,occupational,andspeechtherapy;hospiceandothermedicalservices.MedicarebeneficiariescanchoosetoenrollinaMedicarehealthmaintenanceorganization(HMO)asanalternativetotheoriginal,fee-for-serviceMedicare.Medicaredoesnotcoverlong-termcareinanursinghome,butitdoescovershortstaysin“skillednursingfacilities”whenthestayfollowswithin 30daysofahospitalizationofthreedaysormoreforanacuteillnesssuchasaheartattackorbrokenhip.Medicarebeneficiariespaypremiumsforcoverageandgenerallypaydeductiblesandco-paymentsforparticularservices.Medicarepremiums,deductiblesandco-paymentsdonotcoverthefullcostofservicestobeneficiaries.Theprogramistax-supported.
A11.Medicaid:Medicaidisapubliclyfundedhealthservicesprogramforlow-incomeAmericans.Itisjointlyfundedbythefederalgovernmentandthestatesaccordingtoacomplexformula.In addition to basic health services, Medicaid covers nursing home careandvarioushome-andcommunity-basedlong-termcareservicesforindividualswhomeetprogramrequirementsforlevelofcare,incomeandassets.StateshaveconsiderableflexibilityaboutwhichservicesarecoveredintheirMedicaidprograms,andcoveredservicesvarygreatlyindifferentstates.
A12.LewinModelonAlzheimer’sandDementiaPrevalenceandCosts: These numbers come from an analysis conducted for the Alzheimer’sAssociationbyTheLewinGroup.Theanalysisestimatedtotalpaymentsforhealthcare,long-termcareand
hospiceforpeoplewithAlzheimer’sdiseaseandotherdementiasfor2010basedonfindingsfromthepreviousanalysisofdatafromthe2004MedicareCurrentBeneficiarySurvey(MCBS).(78)A9
A13.National20%SampleMedicareFee-for-ServiceBeneficiariesReport: These data come from an analysis of Medicare claims data for2005-2006.TheanalysiswasconductedbyJulieBynum,MD,MPH,DartmouthInstituteforHealthPolicyandClinicalCare,CenterforHealthPolicy.ThedatacomefromMedparfiles(hospitalandskillednursingfacilityservices),outpatientfiles(outpatienthospitalservices),carrierfiles(physicianandsupplierservices),hospicefiles(hospiceservices),DME(durablemedicalequipment)files,andhomehealthfiles(homehealthservices).Datafromtheanalysis that are included in 2010 Alzheimer’s Disease Facts and FigurespertainonlytoMedicarebeneficiariesaged65andolder.Forthisanalysis,peoplewithdementiaaredefinedasthosewhohave at least one claim with a diagnostic code for Alzheimer’s diseaseorotherdementiainMedpar,MedicarePartB,hospiceorhomehealthfilesin2005.ThediagnosticcodesusedtoidentifysurveyparticipantswithAlzheimer’sdiseaseandotherdementiasare331.0,331.1,331.11,331.19,331.2,331.7,331.82,290.0,290.1,290.10,290.11,290.12,290.13,290.20,290.21,290.3,290.40,290.41,290.42,290.43,291.2,294.0,294.1,294.10and290.11.PeoplewithotherchronicconditionsaredefinedasthosewhohadatleastoneMedicarePartAclaimortwoPartBclaimsoccurringatleastsevendaysapartwithadiagnosticcodeforthecondition.MedicarebeneficiarieswithAlzheimer’sdisease,otherdementiasandotherchronicconditionswereidentifiedin2005Medicareclaims,andoutcomes(useandcostsofservices)weretakenfrom2006Medicareclaims.Thisprospectivemethoddecreasestheinfluenceofpeoplewithanewdiagnosis,whichisusuallyassociatedwithhigheruseandcostsofservicescomparedwithongoingmanagementofthecondition.
A14.TheExpertPanelconvenedbytheAlzheimer’sAssociationtoprovideguidanceforthedevelopmentoftheSpecialReport:PanelmembersareHelenaChui,M.D.,MaryN.Haan,M.P.H.,Dr.P.H.,EricB.Larson,M.D.,M.P.H.,andJenniferJ.Manly,Ph.D.AdditionalassistancetothepanelandtheAlzheimer’sAssociationwasprovidedbyNicoleSchupf,Ph.D,Dr.P.H.,andLingZheng,M.B.B.S.,Ph.D.TheseindividualsprovidedinformationaboutandanalysisofresearchconductedintheUnitedStatesontheincidenceandprevalenceofAlzheimer’sdiseaseandotherdementiasinvariousracialandethnicgroups.OnlysomeoftheinformationandanalysistheyprovidedisincludedintheSpecialReport.WhiletheseindividualsprovidedvaluableinformationandguidancetotheAlzheimer’sAssociationinthedevelopmentofthereport,theAlzheimer’sAssociationissolelyresponsibleforthecontentofthereport.
A15.TheHealthandRetirementStudy(HRS)survey:TheHRSsurveyisalargescale,longitudinalsurveyofanationallyrepre-sentativesampleofpeopleage50andolderintheUnitedStates,includingpeoplelivinginthecommunity,nursinghomes,andotherinstitutions.ThesurveyisconductedbytheUniversityofMichigan’sInstituteforSocialResearchandSurveyResearchCenter,underacontractwiththeNationalInstituteonAging.DetailsofHRSdesignandmethodsareavailableatthestudy’swebsite,http://hrsonline.isr.umich.edu.TheHRSdatausedinthisSpecialReportwereprovidedundercontractwiththeAlzheimer’sAssociationbyKennethM.Langa,M.D.,Ph.D.,MohammedU.Kabeto,M.S.,andDavidWeir,Ph.D.ThesedatawerevaluabletotheAlzheimer’sAssociationinthedevelopmentofthereport,buttheAlzheimer’sAssociationissolelyresponsibleforthecontentofthereport.
2010 Alzheimer’s Disease Facts and Figures Appendices
64
SurveySample:TheHRSdatausedinthisSpecialReportcomefromthe2006surveyandpertaintopeopleage55andolder.TheAlzheimer’sAssociationcontractedfordataonfourgroups:whites,African-Americans,Hispanics,and“other.”Dataonthe“other”grouparenotincludedinthereportbecauseoftherelativelysmallnumberofsurveyparticipantswithcognitiveimpairmentinthatgroup.Thesampleincluded12,357whites,2,253African-Americans,and1,397Hispanics.Withweighting,thesesurveyparticipantsrepresentabout56.2millionwhites;6.1millionAfrican-Americans;and4.4millionHispanics.
Self-andProxyRespondents:TheHRSconductstelephoneandface-to-faceinterviewswithsurveyparticipantswhoareabletorespondtotheinterview.Ifthedesignatedsurveyparticipantisnotabletorespondtotheinterview,theinterviewisconductedwithaproxyre-spondent,whoisusuallyafamilymember.In2006,96percentofthe4,925surveyparticipantsaged55-64wereabletoparticipateintheinterview,and4percenthadaproxyrespondent;92percentofthe11,348surveyparticipantsage65andolderwereabletoparticipateintheinterview,and8percenthadaproxyrespondent.
MeasuresofCognitiveStatus:Forself-respondents,theHRSinterviewincludesamodifiedversionoftheTelephoneInterviewforCognitiveStatus(TICS).(SeeBrandt,J;Spencer,M;andFolstein,M.“TheTelephoneInterviewforCognitiveStatus.”Neuropsychiatry, Neuropsychology, and Behavioral Neurology1988;1(2):111-117.)TheversionoftheTICSthatisusedforself-respondentsunderage65isshorterthantheversionusedforself-respondentsaged65andolder.Toobtaincomparableinformationoncognitivestatusforthetwoagegroupsforthisreport,scoresbasedonitemsintheshorterversionoftheTICSwereusedforallself-respondents.Theshorterversionincludes:1)animmediateanddelayed10-wordfreerecalltesttomeasurememory;2)aserialsevensubtractiontesttomeasureworkingmemory;and3)acountingbackwardtesttomeasurespeedofmentalprocessing.Respondentscoreswerecalculatedona27-pointscale,andcut-scorestoidentifyrespondentswithcognitiveimpairmentwerebasedonfindingsfromtheAging,Demographics,andMemoryStudy.(12)
Forsurveyparticipantswithproxyrespondents,theHRSinterviewincludedaquestionaboutthesurveyparticipant’smemoryandaquestionaboutthesurveyparticipant’sabilitytoperformfive instrumentalactivitiesofdailyliving(IADLs).Inaddition,forthesesurveyparticipants,theinterviewerisaskedwhetherheorshethinksthesurveyparticipanthascognitiveimpairment.Forthis report,responsestothesethreeproxyandinterviewerquestionswerecombinedtodeterminecognitivestatusforsurveyparticipantswithproxyrespondents.
ValidityoftheModifiedTICS: Many studies have been conducted to testtheextenttowhichvariousversionsoftheTICSprovidevalidresultsaboutcognitivestatusanddementia.ResultsfromtheoriginalTICSwereshowntobehighlysensitiveandspecificforcognitiveim-pairmentinaclinicsampleofpeoplewithAlzheimer’sdisease.(SeeBrandt,J;Spencer,M;andFolstein,M.“TheTelephoneInterviewforCognitiveStatus.”Neuropsychiatry, Neuropsychology, and Behavioral Neurology1988;1(2):111-117.)OtherstudieshaveshownthattheTICShashighsensitivityandspecificityforcognitiveimpairmentanddementiaincommunitysamplesofolderpeople.(SeedeJager,CA;Budge,MM;andClarke,R.“UtilityoftheTICS-Mfortheassessmentofcognitivefunctioninolderadults.” International Journal of Geriatric Psychiatry2003;18(4):318-324.Plassman,B;Newman,TT;Welsh,KA;Helms,M;Breitner,J.“Propertiesofthetelephoneinterviewforcognitivestatus.”Neuropsychiatry, Neuropsychology, and Behavioral Neurology 1994;7:235-241.Welsh,KA;Breitner,JCS;andMagruder-Habib,KM.“Detectionofdementiaintheelderlyusingtelephonescreeningofcognitivestatus.”Neuropsychiatry, Neuropsychology, and Behavioral Neurology1993;6(2):103-110.)Onestudythatcom-paredamodifiedversionoftheTICSandagoldstandard,in-personevaluationfoundthattheresultsoftheTICShadspecificityof1.0fordementia,thusallindividualsidentifiedashavingdementiabytheTICSwerealsoidentifiedashavingdementiabythegoldstandardevaluation;ithadaspecificityof0.83,missingonepersonwithdementiawhohadahigheducationallevelandhighIQ(premorbidverbalIQof120).(SeeCrooks,VC;Clark,L;Petitti,DB;Chui,H;andChiu,V.“Validationofmulti-stagetelephone-basedidentificationofcognitiveimpairmentanddementia.”BMC Neurology2005;5(8):1-8.)
A16.Claims-baseddiagnosesofAlzheimer’sDiseaseandOtherDementias:DatafromtheMedicareChronicConditionWarehouse(CCW):TheCCW,createdandmaintainedbytheU.S.CentersforMedicareandMedicaidServices(CMS),providesdataonthepropor-tionofMedicarebeneficiarieswhohaveaMedicareclaimforhospi-tal,skillednursingfacility(SNF),homehealthagency,oroutpatientorprofessionalPartBservicesthatincludesanICD-9diagnosticcodeforAlzheimer’sdiseaseorotherdementias.Forthisreport,Medicarebeneficiariesaged65andolderwhowerealivein2006andhadatleastonesuchMedicareclaimin2004,2005,or2006wereconsid-eredtohaveaclaims-baseddiagnosisofAlzheimer’sdiseaseorotherdementia.DataontheprevalenceofAlzheimer’sdiseaseandotherdementiasinvariousracialandethnicgroupsin2006,usingclaims-baseddiagnoses,wereprovidedtotheAlzheimer’sAssociationbyFrankPorell,Ph.D.,UniversityofMassachusettsBoston.
Appendices 2010 Alzheimer’s Disease Facts and Figures
65
References
1.Hendrie,HC;Albert,MS;Butters,MA;Gao,S;Knopman,DS;Launer,LJ;Jaffe,K;etal.“TheNIHcognitiveandemotionalhealthproject:ReportoftheCriticalEvaluationStudy Committee.”Alzheimer’s & Dementia2006;2:12–32.
2.Kivipelto,M;Ngandu,T;Fratiglioni,L;Viitanen,M;Kåreholt,I;Winblad,B;Helkala,EL;etal.“ObesityandvascularriskfactorsatmidlifeandtheriskofdementiaandAlzheimer’sdisease.”Archives of Neurology 2005;62:1556–1560.
3.Yaffe,K.“Metabolicsyndromeandcognitivedecline.”Current Alzheimer Research2007;4:123–126.
4.Whitmer,RA;Gustafson,DR;Barrett-Connor,E;Haan,MN;Gunderson,EP;Yaffe,K.“Centralobesityandincreasedriskofdementiamorethanthreedecadeslater.”Neurology 2008;71:1057–1064.
5.Wu,W;Brickman,AM;Luchsinger,J;Ferrazzano,P;Pichiule,P;Yoshita,M;Brown,T;etal.“Thebrainintheageofold:Thehippocampalformationistargeteddifferentiallybydiseasesoflatelife.”Annals of Neurology2008;64:698–706.
6.Solomon,A;Kivipelto,M;Wolozin,B;Zhou,J;Whitmer,RA.“MidlifeserumcholesterolandincreasedriskofAlzheimer’sandvasculardementiathreedecadeslater.”Dementia and Geriatric Disorders2009;28:75–80.
7.Tsivgoulis,G;Alexandrov,AV;Wadley,VG;Unverzagt,FW;Go,RCP;Moy,CS;Kissela,B;etal.“Associationofhigherdiastolicbloodpressurelevelswithcognitiveimpairment.”Neurology 2009;73:589–595.
8.Pendlebury,ST;Rothwell,PM.“Prevalence,incidenceandfactorsassociatedwithpre-strokeandpost-strokedementia:asystematicreviewandmeta-analysis.”Neurology;Publishedonline,Sept.24,2009.Availableatwww.thelancet.com/neurology.
9.Raji,CA;Ho,AJ;Parikshak,NN;Becker,JT;Lopez,OL;Kuller,LH;Hua,X;etal.“Brainstructureandobesity.”Human Brain Mapping;Publishedonline,Aug.6,2009.
10.Hebert,LE;Scherr,PA;Bienias,JL;Bennett,DA;Evans,DA.“Alzheimer’sdiseaseintheU.S.population:Prevalenceestimatesusingthe2000census.”Archives of Neurology 2003;60:1119–1122.
11.Alzheimer’sAssociation.Early-Onset Dementia: A National Challenge, A Future Crisis. (Washington,D.C.:Alzheimer’sAssociation,June2006).Availableatwww.alz.org.
12.Plassman,BL;Langa,KM;Fisher,GG;Heeringa,SG;Weir,DR;Ofstedal,MB;etal.“PrevalenceofdementiaintheUnitedStates:TheAging,DemographicsandMemoryStudy.”Neuroepidemiology2007;29:125–132.
13.Bachman,DL;Wolf,PA;Linn,RT;Knoefel,JE;Cobb,J;Belanger,AJ;etal.“IncidenceofdementiaandprobableAlzheimer’sdiseaseinageneralpopulation.” Neurology 1993;43:515–519.
14.Fillenbaum,GG;Heyman,A;Huber,MS;Woodbury,MA,Leiss,J;Schmader,KE;etal.“Theprevalenceand3-yearincidenceofdementiainolderblackandwhitecommunityresidents.”Journal of Clinical Epidemiology 1998;51(7):587–595.
2010 Alzheimer’s Disease Facts and Figures Appendices
15.Fitzpatrick,AL;Kuller,LH;Ives,DG;Lopez,OL;Jagust,W;Breitner,JCS;etal.“IncidenceandprevalenceofdementiaintheCardiovascularHealthStudy.”Journal of the American Geriatrics Society2004;52:195–204.
16.Kukull,WA;Higdon,R;Bowen,JD;McCormick,WC;Teri,L;Shellenberg,GD;etal.“DementiaandAlzheimer’sdiseaseincidence:Aprospectivecohortstudy.”Archives of Neurology 2002;59:1737–1746.
17.Rocca,WA;Cha,RH;Waring,SC;Kokmen,E.“IncidenceofdementiaandAlzheimer’sdisease:Are-analysisofdatafromRochester,Minnesota,1975–1984.”American Journal of Epidemiology 1998;148(1):51–62.
18.Barnes,LL;Wilson,RS;Schneider,JA;Bienias,JL;Evans,DA;Bennett,DA.“Gender,cognitivedeclineandriskofADinolderpersons.” Neurology 2003;60:1777–1781.
19.Evans,DA;Bennett,DA;Wilson,RS;Bienias,JL;Morris,LA;Scherr,PA;etal.“IncidenceofAlzheimer’sdiseaseinabiracialurbancommunity:RelationtoapolipoproteinEallelestatus.”Archives of Neurology 2003;60:185–189.
20.Hebert,LE;Scherr,PA;McCann,JJ;Becket,LA;Evans,DA.“IstheriskofdevelopingAlzheimer’sdiseasegreaterforwomenthanformen?”American Journal of Epidemiology 2001;153(2):132–136.
21.Miech,RA;Breitner,JCS;Zandi,PP;Khachaturian,AS;Anthony,JC;Mayer,L.“IncidenceofADmaydeclineintheearly90sformen,laterforwomen.”Neurology2002;58:209–218.
22.Gurland,BJ;Wilder,DE;Lantigua,R;Stern,Y;Chen,J;Killeffer,EHP;etal.“Ratesofdementiainthreeethnoracialgroups.”International Journal of Geriatric Psychiatry1999;14:481–493.
23.Stern,Y;Gurland,B;Tatemichi,TK;Tang,MX;Wilder,D;Mayeux,R.“InfluenceofeducationandoccupationontheincidenceofAlzheimer’sdisease.” Journal of the American Medical Association 1994;271(13):1004–1010.
24.Evans,DA;Hebert,LE;Beckett,LA;Scherr,PA;Albert,MS;Chown,MJ;etal.“Educationandothermeasuresofsocioeco-nomicstatusandriskofincidentAlzheimer’sdiseaseinadefinedpopulationofolderpersons.”Archives of Neurology 1997;54(11):1399–1405.
25.Seshadri,S;Beiser,A;Kelly-Hayes,M;etal.“Thelifetimeriskofstroke:EstimatesfromtheFraminghamStudy.”Stroke 2006;37:345–350.
26.CentersforDiseaseControlandPreventionandTheMerckCompanyFoundation.The State of Aging and Health in America, 2007.WhitehouseStation,NJ:TheMerckCompanyFoundation;2007.
27.Kinsella,K;He,W.An Aging World.U.S.CensusBureau,InternationalPopulationReports,P95/09–1.Washington,D.C.:U.S.GovernmentPrintingOffice,2009.
28.Hebert,LE;Scherr,PA;Bienias,JL;etal.“State-specificprojectionsthrough2025ofAlzheimer’sdiseaseprevalence.”Neurology 2004;62:1645.
29.Viswanathan,A;Rocca,WA;Tzourio,C.“Vascularrisk factorsanddementia:Howtomoveforward?”Neurology 2009;72:368–374.
66
30.Schneider,JA;Arvanitakis,Z;Bang,W;Bennett,DA.“Mixedbrainpathologiesaccountformostdementiacasesincommunity-dwellingolderpersons.”Neurology 2007;69:2197–2204.
31.Hebert,LE;Beckett,LA;Scherr,PA;Evans,DA.“AnnualincidenceofAlzheimer’sdiseaseintheUnitedStatesprojectedtotheyears2000through2050.”Alzheimer’s Disease and Associated Disorders2001;15:169–173.
32.Heron,MP;Hoyert,DL;Xu,J;Scott,C;Tejada-Vera,B. “Deaths:Preliminarydatafor2006,”National Vital Statistics Reports Vol.56,No.16.,Hyattsville,Md.:NationalCenterforHealthStatistics,2008.
33.Heron,MP;Hoyert,DL;Murphy,SL;Xu,JQ;Kochanek,KD;Tejada-Vera,B.“Deaths:Finaldatafor2006.”National Vital Statistics Reports Vol.57,No.14.,Hyattsville,Md.:NationalCenterforHealthStatistics,2009.
34.Ives,DG;Samuel,P;Psaty,BM;Kuller,LH.“AgreementbetweennosologistandCardiovascularHealthStudyreviewofdeaths:Implicationsofcodingdifferences.”Journal of the American Geriatrics Society 2009;57:133–139.
35.Wachterman,M;Kiely,DK;Mitchell,SL.“Reportingdementiaonthedeathcertificatesofnursinghomeresidentsdyingwithend-stagedementia.”Journal of the American Medical Association2008;300:2608–2610.
36.Olichney,JM;Hofstetter,CR;Galasko,D;Thal,LJ;KatzmanR.“DeathcertificatereportingofdementiaandmortalityinanAlzheimer’sdiseaseresearchcentercohort.”Journal of the American Geriatrics Society1995;43:890–893.
37.Macera,CA;Sun,RKP;Yeager,KK;Brandes,DA.“Sensitivityandspecificityofdeathcertificatediagnosesfordementingillnesses,1988–1990.”Journal of the American Geriatrics Society1992;40:479–481.
38.Ganguli,M;Rodriguez,EG.“Reportingofdementiaondeathcertificates.Acommunitystudy.”Journal of the American Geriatrics Society 1999;47:842–849.
39.Hoyert,DL.“MortalitytrendsforAlzheimer’sdisease,1979–91.”NationalCenterforHealthStatistics.Vital and Health Statistics1996;20(28):1–23.
40.Larson,EB;Shadlen,M;Wang,L;McCormick,WC;Bowen, JD;Teri,L;etal.“SurvivalafterinitialdiagnosisofAlzheimer’sdisease.”Annals of Internal Medicine2004;140:501–509.
41.NationalCenterforHealthStatistics.“Deaths:Finaldatafor2000.”National Vital Statistics Reports.Vol.50,No.15.Hyattsville,Md.:NationalCenterforHealthStatistics,2002.
42.Retooling for an Aging America: Building the Health Care Workforce for Older Americans.InstituteofMedicineReport,ExecutiveSummary2008.
43.2009NationalAllianceforCaregiving/AARPsurveyoncaregivingintheUnitedStates;datawerepreparedfortheAlzheimer’s Association under contract with Matthew GreenwaldandAssociates,Nov.11,2009.
44.Alzheimer’sAssociationandNationalAllianceforCaregiving.Families Care: Alzheimer Caregiving in the United States.2004.Available at www.alz.org.
45.DeFries,EB;Akhtar,W;Brumback,B;Andresen,E.“Characteristicsofcaregiversofcarerecipientswithandwithoutmemoryorthinkingproblems—Florida,2008.”FloridaOfficeonDisabilityandHealth,UniversityofFlorida,Gainesville,Fla.,May8,2009.
46.MinnesotaDepartmentofHealth,2008 Minnesota Behavioral Risk Factors Surveillance System Survey: Caregiver Module, January2010.
47.DeFries,EL;McGuire,LC;Andresen,EM;Brumback,BA;Anderson,LA.“Caregiversofolderadultswithcognitiveimpairment.”Preventing Chronic Disease: Public Health Research, Practice and Policy2009;6(2).Availableat http://www.cdc.gov/pcd/issues/2009/apr/08_0088.htm.
48.WashingtonStateDepartmentofHealth,CenterforHealthStatistics,unpublisheddatafromthe2007WashingtonStateBehavioralRiskFactorsSurveillanceSystemsurvey,October2008.
49.MetLifeMatureMarketInstitute.The MetLife Study of Alzheimer’s Disease: The Caregiving Experience.Aug.2006.Available at www.maturemarketinstitute.com.
50.Zhu,CW;Scarmeas,N;Torgan,R;Albert,M;Brandt,J;Blacker,D;etal.“ClinicalcharacteristicsandlongitudinalchangesofinformalcostofAlzheimer’sdiseaseinthecommunity.”Journal of the American Geriatrics Society 2006;54(10):1596–1602.
51.Mahoney,DF.“Vigilance:EvolutionanddefinitionforcaregiversoffamilymemberswithAlzheimer’sdisease.”Journal of Gerontological Nursing2003;29(8):24–30.
52.Schulz,R;Mendelsohn,AB;Haley,WE;Mahoney,D;Allen,RS;Zhang,S;etal.“End-of-lifecareandtheeffectsofbereavementonfamilycaregiversofpersonswithdementia.”New England Journal of Medicine2003;349(20):1936–1942.
53.NationalAllianceforCaregivingandUnitedHospitalFund.Young Caregivers in the U.S.: Report of Findings.Sept.2005.Availableat www.caregiving.org.
54.Garity,J.“CaringforafamilymemberwithAlzheimer’sdisease:Copingwithcaregiverburdenpost-nursinghomeplacement.”Journal of Gerontological Nursing2006;32(6):39–48.
55.Port,CL;Zimmerman,S;Williams,CS;Dobbs,D;Preisser,JS;Williams,SW.“Familiesfillingthegap:Comparingfamilyinvolvement for assisted living and nursing home residents with dementia.”Gerontologist2005;45(SpecialIssue1):87–95.
56.Schulz,R;Belle,SH;Czaja,SJ;McGinnis,KA;Stevens,A;Zhang,S.“Long-termcareplacementofdementiapatientsandcaregiverhealthandwell-being.”Journal of the American Medical Association2004;292(8):961–967.
57.Cohen,CA;Colantonio,A;Vernich,L.“Positiveaspectsofcaregiving:Roundingoutthecaregiverexperience.”International Journal of Geriatric Psychiatry2002;17(7):184–188.
58.Farran,CJ;Keane-Hagerty,E;Salloway,S;Kupferer,S;Wilken,CS.“Findingmeaning:AnalternateparadigmforAlzheimer’sdiseasefamilycaregivers.”Gerontologist1991;31(4):483–489.
59.Yaffe,K;Fox,P;Newcomer,R;Sands,L;Lindquist,K;Dane,K;etal.“Patientandcaregivercharacteristicsandnursinghomeplacementinpatientswithdementia.”Journal of the American Medical Association2002;287:2090–2097.
Appendices 2010 Alzheimer’s Disease Facts and Figures
67
60.Taylor,DH;Ezell,M;Kuchibhatla,M;Ostbye,T;Clipp,EC.“Identifyingthetrajectoriesofdepressivesymptomsforwomencaringfortheirhusbandswithdementia.”Journal of the American Geriatrics Society2008;56(2):322–327.
61.Cohen,CA;Gold,DP;Shulman,KI;Wortley,JT;McDonald,G;Wargon,M.“Factorsdeterminingthedecisiontoinstitutionalizedementingindividuals:Aprospectivestudy.”Gerontologist 1993;33(6):714–720.
62.Buhr,GT;Kuchibhatla,M;Clipp,EC.“Caregivers’reasonsfornursinghomeplacement:Cluesforimprovingdiscussionswithfamiliespriortothetransition.”Gerontologist2006;46(1):52–61.
63.Hooker,K;Bowman,SR;Coehlo,DP;Sim,SR;Kaye,J;Guariglia,R;etal.“Behavioralchangeinpersonswithdementia:Relationshipswithmentalandphysicalhealthofcaregivers.”Journal of Gerontology: Psychological Sciences 2002;57B(5):P453–P460.
64.Schulz,R;O’Brien,AT;Bookwala,J;Fleissner,K.“Psychiatricandphysicalmorbidityeffectsofdementiacaregiving:Prevalence,correlatesandcauses.”Gerontologist 1995;35(6):771–791.
65.Vitaliano,PP;Zhang,J;Scanlan,JM.“Iscaregivinghazardoustoone’sphysicalhealth?Ameta-analysis.”Psychological Bulletin 2003;129(6):946–972.
66.Lutgendorf,SK;Garand,L;Buckwalter,KC;Reimer,TT;Hong,S-Y;Lubaroff,DM.“Lifestress,mooddisturbance,andelevatedInterleukin-6inhealthyolderwomen.”Journal of Gerontology: Medical Sciences1999;54A(9):M434–439.
67.VonKanel,R;Dimsdale,JE;Mills,PJ;Ancoli-Israel,S;Patterson,TL;Mausback,BT;etal.“EffectofAlzheimercaregivingstressandageonfrailtymarkersInterleukin-6,C-ReactiveProtein,andD-Diner.”Journal of Gerontology: Medical Sciences 2006;61A(9):963–969.
68.Kiecolt-Glaser,JK;Glaser,R;Gravenstein,S;Malarkey,WB;Sheridan,J.“Chronicstressalterstheimmuneresponsetoinfluenzavirusvaccineinolderadults.”Proceedings of the National Academy of Sciences1996;93:3043–3047.
69.Kiecolt-Glaser,JK;Dura,JR;Speicher,CE;Trask,OJ;Galser,R.“Spousalcaregiversofdementiavictims:Longitudinalchangesinimmunityandhealth.”Psychosomatic Medicine 1991;53:345–362.
70.Kiecolt-Glaser,JK;Marucha,PT;Mercado,AM;Malarkey,WB;Glaser,R.“Slowingofwoundhealingbypsychologicalstress.”Lancet 1995;346(8984):1194–1196.
71.Shaw,WS;Patterson,TL;Ziegler,MG;Dimsdale,JE;Semple,SJ;Grant,I.“AcceleratedriskofhypertensivebloodpressurerecordingsamongAlzheimercaregivers.”Journal of Psychosomatic Research1999;46(3):215–227.
72.Vitaliano,PP;Scanlan,JM;Zhang,J;Savage,MV;Hirsch,IB;Siegler,I.“Apathmodelofchronicstress,themetabolicsyndromeandcoronaryheartdisease.”Psychosomatic Medicine2002;64:418–435.
73.Schubert,CC;Boustani,M;Callahan,CM;Perkins,AJ;Hui,S;Hendrie,HC.“Acutecareutilizationbydementiacaregiverswithinurbanprimarycarepractices.”Journal of General Internal Medicine2008;23(11):1736–1740.
2010 Alzheimer’s Disease Facts and Figures Appendices
74.Christakis,NA;Allison,PD.“Mortalityafterthehospitalizationofaspouse.”New England Journal of Medicine2006;354:719–730.
75.Covinsky,KI;Eng,C;Liu,L-Y;Sands,LP;Sehgal,AR;Walter,LC;etal.“Reducedemploymentincaregiversoffrailelders:Impactofethnicity,patientclinicalcharacteristicsandcaregivercharacteristics.”Journal of Gerontology: Medical Sciences 2001;56A(11):M707–713.
76.EvercareandtheNationalAllianceforCaregiving.The Evercare Survey of the Economic Downturn and Its Impact on Family Caregiving. April2009.Availableathttp://www.caregiving.org/data/EVC_Caregivers_Economy_Report%20FINAL_4-28-09.pdf.
77.NationalAllianceforCaregivingandEvercare.Evercare Study of Family Caregivers—What They Spend, What They Sacrifice. November2007.Availableatwww.EvercareHealthPlans.com.
78.Alzheimer’sAssociation.Characteristics, Costs and Health Service Use for Medicare Beneficiaries with a Dementia Diagnosis: Report 1: Medicare Current Beneficiary Survey. PreparedundercontractbyJulieBynum,M.D.,MPH,DartmouthInstituteforHealthPolicyandClinicalCare,CenterforHealthPolicyResearch,January2009.
79.Koppel,R.Alzheimer’s Disease: The Costs to U.S. Businesses in 2002(Washington,D.C.:Alzheimer’sAssociation,June2002).Available at http://www.alz.org, search “Alzheimer’s Disease: TheCoststoU.S.Businessesin2002.”
80.Maslow,K.“Howmanyhospitalpatientshavedementia?”in N.SilversteinandK.Maslow(eds.)Improving Hospital Care for People with Dementia(NewYork,NY:SpringerPublishingCo.,2006).
81.U.S.CentersforMedicareandMedicaidServices.Chronic Condition Data Warehouse, Data from OASIS Assessments.PreparedbyJenniferWolff,Ph.D.,JohnsHopkinsUniversitySchoolofPublicHealth,fortheAlzheimer’sAssociation, Apr.11,2008.
82.Bynum,JPW;Rabins,PV;Weller,W;Niefeld,M;Anderson,GF;Wu,AW.“Therelationshipbetweenadementiadiagnosis,chronicillness,Medicareexpendituresandhospitaluse.”Journal of the American Geriatrics Society2004;52:187–194.
83.Caspi,E;Silverstein,NM;Porell,F;Kwan,N.“Physicianoutpatientcontactsandhospitalizationsamongcognitivelyimpairedelderly.”Alzheimer’s & Dementia 2009;5:30–42.
84.Alzheimer’sAssociation.Characteristics, Costs and Health Service Use for Medicare Beneficiaries with a Dementia Diagnosis: Report 2: National 20% Sample Medicare Fee-for-Service Beneficiaries.PreparedundercontractbyJulieBynum,M.D.,MPH,DartmouthInstituteforHealthPolicyandClinicalCare,CenterforHealthPolicyResearch,January2009.
85.UnpublishedtabulationsdevelopedbytheUrbanInstituteforthe Alzheimer’s Association based on data from the 2000 MedicareCurrentBeneficiarySurveyandMedicareclaimsfor2000.
86.Johnson,RW;Wiener,JM.A Profile of Frail Older Americans and Their Caregivers.Washington,D.C.:UrbanInstitute,February2006.
68
87.Fortinsky,RH;Fenster,JR;Judge,JO.“MedicareandMedicaidhome health and Medicaid waiver services for dually eligible olderadults:Riskfactorsforuseandcorrelatesofexpendi-tures.”Gerontologist2004;44(6):739–749.Thedatacomefromassessmentsof5,232elderlypeopleservedbyConnecticut’sMedicaidhome-andcommunity-basedwaiverprogram.
88.Hirdes,JP;Fries,BE;Morris,JN;etal.“Homecarequalityindicators(HCQIs)basedontheMDS-HC.”Gerontologist 2004;44(5):665–679.Thedatacomefromassessmentsof11,252lowincomeadultsservedbyaMichiganhome-andcommunity-basedwaiverprogramandastate-fundedcasemanagementprogram.
89.Mitchell,G;Salmon,JR;Polivka,L;Soberon-Ferrer,H.“TherelativebenefitsandcostofMedicaidhome-andcommunity-basedservicesinFlorida.”Gerontologist2006;46(4):483–494.Thedatacomefromassessmentsof6,014adultsaged60+servedbyfiveFloridaMedicaidhome-andcommunity-basedwaiverprograms.
90.PartnersinCaregiving.A National Study of Adult Day Services 2001–2002.Winston-Salem,N.C.:WakeForestUniversitySchoolofMedicine,2002.
91.O’Keeffe,J;Siebenaler,K.Adult Day Services: A Key Community Service for Older Adults.Washington,D.C.,U.S.DepartmentofHealthandHumanServices,OfficeoftheAssistantSecretaryforPlanningandEvaluation,July2006.
92.Hyde,J;Perez,R;Forester,B.“DementiaandAssistedLiving,”The Gerontologist 2007;47(SpecialIssueIII):51–67.
93.U.S.DepartmentofHealthandHumanServices,CentersforMedicareandMedicaidServices,Nursing Home Data Compendium,2009Edition.
94.AmericanHealthCareAssociation,Medical Condition—Mental Status CMS OSCAR Data Current Surveys,June2009.
95.AmericanHealthCareAssociation,Nursing Facility Beds in Dedicated Special Care Units CMS OSCAR Data Current Surveys,June2009.
96.AmericanHealthCareAssociation,Nursing Facility Beds in Dedicated Special Care Units CMS OSCAR Data Current Surveys,June2004.
97.MetLifeMatureMarketInstitute.Market Survey of Long-Term Care Costs: The 2009 MetLife Market Survey of Nursing Home, Assisted Living, Adult Day Services and Home Care Costs, October2009.
98.Purcell,P.CRS Report for Congress: Income and Poverty Among Older Americans in 2008.U.S.Congress,CongressionalResearchService,Oct.2,2009.
99.KaiserCommissiononMedicaidandtheUninsured.The Distribution of Assets in the Elderly Population Living in the Community.Washington,D.C.:HenryA.KaiserFamilyFoundation,2005.
100.Coronel,S.Long Term Care Insurance in 2002. America’s HealthInsurancePlans,2004.
101.KaiserCommissiononMedicaidandtheUninsured.Medicaid and Long-Term Care Services and Supports.Washington,D.C.:HenryA.KaiserFamilyFoundation,2009.
102.Cohen,MA;Miller,JS;Shi,X.Service Use and Transitions: Decisions, Choices and Care Management Among an Admissions Cohort of Privately Insured Disabled Elders, U.S.DepartmentofHealthandHumanServicesAssistantSecretaryforPlanningandEvaluationOfficeofDisability,AgingandLong-TermCarePolicy,December2006.
103.Neuman,P;Cubanski,J;Desmond,Ka;Rice,TH.“Howmuch‘skininthegame’doMedicarebeneficiarieshave?Theincreasingfinancialburdenofhealthcarespending,1997–2003.”Health Affairs2007;26(6):1692–1701.
104.Caplan,C;Brangan,N.Out-of-pocket Spending on Health Care by Medicare Beneficiaries Age 65 and Older in 2003. AARPPublicPolicyInstitute.September2004.
105.Medicare Fact Sheet: The Prescription Drug Benefit. Washington,D.C.:HenryA.KaiserFamilyFoundation,November2009.
106.U.S.CentersforMedicareandMedicaidServices.HospiceCenter.Availableathttp://www.cms.hhs.gov/center/hospice.asp.
107.Dilworth-Anderson,P;Hendrie,HC;Manly,JJ;Khachaturian,AS;Fazio,S.“DiagnosisandassessmentofAlzheimer’sdiseaseindiversepopulations.”Alzheimer’s & Dementia 2008;4:305–309.
108.Manly,JJ;Mayeux,R.“EthnicdifferencesindementiaandAlzheimer’sdisease.”InAndersonNA;Bulatao,RA;Cohen,B.(Eds.).Critical perspectives on racial and ethnic differentials in health in late life(pp.95–141).Washington,D.C.:NationalAcademiesPress,2004.
109.Potter,GC;Plassman,BL;Burke,JR;Kabeto,MU;Langa,KM;Llewellyn,DJ;etal.“CognitiveperformanceandinformantreportsinthediagnosisofcognitiveimpairmentanddementiainAfrican-Americansandwhites.”Alzheimer’s & Dementia 2009;5:445–453.
110.U.S.CensusBureau,U.S.populationprojections:Nationalpopulationprojectionsreleased2008(basedonCensus2000):Summarytables.Availableathttp://www.census.gov/population/www/projections/summarytables.html.AccessedJan.8,2010.
111.HealthandRetirementStudy,unpublisheddatafromthe2006surveyprovidedundercontracttotheAlzheimer’sAssociationbyK.Langa,M.Kabeto,andD.Weir,Jan.8,2010.
112.Black,SA;Espino,DV;Mahurin,R;Lichtenstein,MJ;Hazuda,HP;Fabrizio,D;etal.“TheinfluenceofnoncognitivefactorsontheMini-MentalStateExaminationinolderMexican-Americans:FindingsfromtheHispanicEPESE.”Journal of Clinical Epidemiology1999;52(11):1095–1102.
Appendices 2010 Alzheimer’s Disease Facts and Figures
69
113.Fillenbaum,G;Heyman,A;Williams,K;Prosnitz,B;Burchett,B.“Sensitivityandspecificityofstandardizedscreensofcognitiveimpairmentanddementiaamongelderblackandwhitecommunityresidents.”Journal of Clinical Epidemiology 1990;43(7):651–660.
114.Manly,JJ;Jacobs,DM;Sano,M;Bell,K;Merchant,CA;Small,SA;etal.“CognitivetestperformanceamongnondementedelderlyAfricanAmericansandwhites.”Neurology 1998;50:1238–1245.
115.Mehta,KM;Simonsick,EM;Rooks,R;Newman,AB;Pope,SK;Rubin,SM;etal.“Blackandwhitedifferencesincognitivefunctiontestscores:Whatexplainsthedifference?”Journal of the American Geriatrics Society2004;52(12):2120–2127.
116.Mulgrew,CL;Morgenstern,N;Shetterly,SM;Baxter,J;Baron,AE;Hamman,RF.“CognitivefunctioningandimpairmentamongruralelderlyHispanicsandnon-HispanicwhitesasassessedbytheMini-MentalStateExamination.”Journal of Gerontology: Psychological Sciences1999;54B(4):P223–P230.
117.Shadlen,MF;Siscovick,D;Fitzpatrick,A;Dulberg,C;Kuller,LH;Jackson,S.“Education,cognitivetestscoresandblack-whitedifferencesindementiarisk.”Journal of the American Geriatrics Society2006;54(6):898–905.
118.Lopez,OL;Kuller,LH;Fitzpatrick,A;Ives,D;Becker,JT;andBeauchamp,N.“EvaluationofdementiaintheCardiovascularHealthCognitionStudy.”Neuroepidemiology2003;22:1-12.
119.Hendrie,HC;Osuntokun,BO;Hall,KS;Ogunniyi,AO,Hui,SL;Unverzagr,FW.“PrevalenceofAlzheimer’sdiseaseanddementiaintwocommunities:NigerianAfricansandAfricanAmericans.”American Journal of Psychiatry 1995;152(10):1485–1492.
120.Haan,MN;Mungas,DM;Gonzalez,HM;Ortiz,TA;Acharya,A;Jagust,WJ.“PrevalenceofDementiainOlderLatinos:TheInfluenceofType2DiabetesMellitus,StrokeandGeneticFactors.”Journal of the American Geriatrics Society 2003;51;169–177.
121.Graves,AB;Larson,EB;Edland,SD;Bowen,JD;McCormick,WC;McCurry,SM;Rice,MM;Wenzlow,A;Uomoto,JM.“PrevalenceofdementiaanditssubtypesintheJapanese-AmericanpopulationofKingCounty,WashingtonState:TheKameProject.”American Journal of Epidemiology 1996;144(8):760–771.
122.White,L;Petrovitch,H;Ross,GW;Masaki,KH;Abbott,RD;Teng,EL;etal.“PrevalenceofdementiainolderJapanese-AmericanmeninHawaii:TheHonolulu-AsiaAgingStudy.”Journal of the American Medical Association 1996;276(12):955–960.
123.Clark,CM;DeCarli,C;Mungas,D;Chui,H;Higdon,R;Nunez,J;etal.“EarlieronsetofAlzheimer’sdiseasesymptomsinLatinoindividualscomparedwithAngloindividuals.”Archives of Neurology2005;62:774–778.
2010 Alzheimer’s Disease Facts and Figures Appendices
124.Farrer,LA;Cupples,LA;Haines,JL;Hyman,B;Kukull,WA;Mayeux,R;Myers,RH;Pericak-Vance,MA;Risch,N;vanDuijn,CM.“Effectsofage,sex,andethnicityontheassociationbetweenapolipoproteinEgenotypeandAlzheimerdisease.Ameta-analysis.APOEandAlzheimerDiseaseMetaAnalysisConsortium.”Journal of the American Medical Association1997;278:1349–1356.
125.Arvanitakis,Z;Wilson,RS;Bienias,JL;Evans,DA;Bennett,DA.“DiabetesMellitusandriskofAlzheimerdiseaseanddeclineincognitivefunction.”Journal of the American Medical Association2004;61(5):661–666.
126.Breteler,MMB.“VascularriskfactorsforAlzheimer’sdisease:Anepidemiologicperspective.”Neurobiology of Aging 2000;21:153–160.
127.Craft,S.“TheroleofmetabolicdisordersinAlzheimerdiseaseandvasculardementia:Tworoadsconverged.”Archives of Neurology 2009;66(3):300–305.
128.Honig,LS;Tang,M-X;Albert,S;Costa,R;Luchsinger,J;Manly,JJ;etal.“StrokeandtheriskofAlzheimerdisease.”Archives of Neurology2003;60:1707–1712.
129.Kennelly,SP.“Review:Bloodpressureanddementia—Acomprehensivereview.”Therapeutic Advances in Neurological Disorders2009;2(4):241–260.
130.Kuller,LH;Lopez,OL;Jagust,WJ;Becker,JT;DeKosky,ST;Lyketsos,C;etal.“DeterminantsofvasculardementiaintheCardiovascularHealthStudyCognitionStudy.”Neurology 2005;64:1548–1552.
131.Luchsinger,JA;Tang,M-X;Stern,Y;Shea,S;Mayeux,R.“DiabetesmellitusandriskofAlzheimer’sdiseaseanddementiawithstrokeinamultiethniccohort.”American Journal of Epidemiology2001;154:635–641.
132.Newman,AB;Fitzpatrick,AL;Lopez,O;Jackson,S;Lyketsos,C;Jagust,W;etal.“DementiaandAlzheimer’sdiseaseincidenceinrelationshiptocardiovasculardiseaseintheCardiovascularHealthStudycohort.”Journal of the American Geriatrics Society2005;53(7):1101–1107.
133.Patterson,C;Feightner,J;Garcia,A;MacKnight,C.“Generalriskfactorsfordementia:Asystematicevidencereview.”Alzheimer’s & Dementia2007;3:341–347.
134.Skoog,I;Kalaria,RN;Breteler,MM.“VascularfactorsandAlzheimerdisease.”Alzheimer Disease and Associated Disorders1999;13(Supplement3):S106–114.
135.Luchsinger,JA;Reitz,C;Honig,LS;Tang,M-X;Shea,S;Mayeux,R.“AggregationofvascularriskfactorsandriskofincidentAlzheimerdisease.”Neurology2005;65:545–551.
136.AmericanCancerSociety.Cancer Facts and Figures for African Americans2007–2008(Atlanta,Ga.,2007).
137.Hanon,O;Forett,F.“Treatmentofhypertensionandpreventionofdementia.”Alzheimer’s & Dementia 2005;1(1):30–37.
70 Appendices 2010 Alzheimer’s Disease Facts and Figures
138.Callahan,CM;Hall,KS;Hui,SL;Musick,BS;Unverzagt,FW;Hendrie,HC.“Relationshipofage,education,andoccupationwithdementiaamongacommunity-basedsampleofAfrican-Americans.”Archives of Neurology 1996;53(2):134–140.
139.Hall,KS;Gao,S;Unverzagt,FW;Hendrie,HC.“Loweducationandchildhoodruralresidence.”Neurology2000;54:95–99.
140.Mehta,KM;Stewart,AL;Langa,KM;Yaffe,K;Moody-Ayers,S;Williams,BA;etal.“’Belowaverage’self-assessedschoolperformanceandAlzheimer’sdiseaseintheAging,DemographicsandMemoryStudy.”Alzheimer’s & Dementia 2009;5:380–387.
141.Clark,PC;Kutner,NG;Goldstein,FC;Peterson-Hazen,S;Garner,V;Zhang,R;etal.“ImpedimentstotimelydiagnosisofAlzheimer’sdiseaseinAfrican-Americans.”Journal of the American Geriatrics Society2005;53(11):2012–2117.
142.Fitten,IJ;Ortiz,F;Ponton,M.“FrequencyofAlzheimer’sdiseaseandotherdementiasinacommunityoutreachsampleofHispanics.”Journal of the American Geriatrics Society 2001;49(10):1301–1308.
143.ConnellCM;RobertsJS;McLaughlinSJ;Carpenter,BD.“Blackandwhiteadultfamilymembers’attitudestowardadementiadiagnosis.”Journal of the American Geriatrics Society2009;57(9):1562–1568.
144.Gardner,LA;Simpson,HC.“AccessanduseofhealthservicesintheArkansasDeltabyAfrican-Americancaregivers.”Alzheimer’s Care Today2009;10(2):81–92.
145.Griffin-Pierce,T;Silverberg,N;Connor,D;Jim,M;Peters,J;Kaszniak,A;etal.“Challengestotherecognitionandassessment of Alzheimer’s disease in American Indians of the southwesternUnitedStates.”Alzheimer’s & Dementia 2008;4:291–299.
146.MedicaredatafromtheU.S.CentersforMedicareandMedicaidServices(CMS)MedicareChronicConditionWarehouse,analyzedbyF.Porell,PhD,UniversityofMassachusetts-Boston,December2009.
147.Wilkins,CH;Wilkins,KL;Meisel,M;Depke,M;Williams,J;Edwards,DF.“DementiaUndiagnosedinPoorOlderAdultswithFunctionalImpairment.”Journal of the American Geriatrics Society2007;55(11):1771–1776.
148.Mehta,KM;Yin,M;Resendez,C;Yaffe,K.“EthnicdifferencesinacetylcholinesteraseinhibitoruseforAlzheimerdisease.”Neurology2005;65(1):159–162.
149.Zuckerman,IH;Ryder,PT;Simoni-Wastila,L;Shaffer,T;Sato,M;Zhao,L;etal.“RacialandethnicdisparitiesinthetreatmentofdementiaamongMedicarebeneficiaries.”Journal of Gerontology: Social Services 2008;63B(5):S328–S333.
The Alzheimer’s Association is the leading voluntary health organization
in Alzheimer care, support and research.
Our mission is to eliminate Alzheimer’s disease through the advancement
of research; to provide and enhance care and support for all affected; and to
reduce the risk of dementia through the promotion of brain health.
Our vision is a world without Alzheimer’s disease.
Alzheimer’s Association National Office 225 N. Michigan Ave., Fl. 17 Chicago, IL 60601-7633
Alzheimer’s Association Public Policy Office 1319 F. Street N.W., Suite 500 Washington, D.C. 20004-1106
1.800.272.3900www.alz.org
©2010 Alzheimer’s Association. All rights reserved.This is an official publication of the Alzheimer’s Association but may be distributed by unaffiliated organizations and individuals. Such distribution does not constitute an endorsement of these parties or their activities by the Alzheimer’s Association.
®
top related