Alzheimer's Associaton's 2010 Alzheimer's Disease Facts ... · PDF fileContents 2 2010...

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.


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.


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)


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


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-


livedinthesamehouseholdasthepersonforwhom

theywereprovidingcare.(49)

Caregiversrangeinagefromveryyoungtoveryold.

The2009NAC/AARPsurveyfoundthat14percent


dementiaswereunderage35;26percentwereaged

35–49;46percentwereaged50–64;and13percent

wereaged65andover(Figure6).(43) Their average age

was51.


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-


hadchildrenorgrandchildrenunderage18livingat

home.(43)Anotherstudyfoundthat17percentofcare-


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


27

versus33percent,respectively).(43)Caregiversof

peoplewithAlzheimer’sandotherdementiasarealso

morelikelytoadvocateforthepersonwithgovern-

mentagenciesandserviceproviders(64percent


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)


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)


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)


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)


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


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


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)


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%




$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)


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


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.


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)


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)


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.


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)


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


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


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)


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


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).


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



Hispanic

All 55 17 29 6 9



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


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)


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



Hispanic

All 60 48 43 55



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


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)


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


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)


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.


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70 Appendices 2010 Alzheimer’s Disease Facts and Figures

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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.

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