alzheimer facts figures 2012

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2012 ALZHEIMER’S DISEASE FACTS AND FIGURES Includes a Special Report on People with Alzheimer’s Disease and Other Dementias Who Live Alone ONE IN EIGHT OLDER AMERICANS HAS ALZHEIMER’S DISEASE. ALZHEIMER’S DISEASE IS THE SIXTH-LEADING CAUSE OF DEATH IN THE UNITED STATES. OVER 15 MILLION AMERICANS PROVIDE UNPAID CARE FOR A PERSON WITH ALZHEIMER’S OR OTHER DEMENTIAS. PAYMENTS FOR CARE ARE ESTIMATED TO BE $200 BILLION IN 2012.

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One in eight older Americans has Alzheimer’s disease. alzheimer’s disease is the sixth-leading cause of death in the united states. over 15 million americans provide unpaid care for a person with alzheimer’s or other dementias. payments for care are estimated to be $200 Billion in 2012. facts and figures

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Page 1: Alzheimer facts figures 2012

INCLuDeS A SPeCIAL rePOrT ON

eArLY DeTeCTION AND DIAgNOSIS

2011 Alzheimer’s Disease Facts and Figures2012

Alzheimer’s diseAse fActs And figures

Includes a Special Report on People with Alzheimer’s Disease and Other Dementias Who Live Alone

One in eight Older AmericAns hAs Alzheimer’s diseAse. Alzheimer’s diseAse is the sixth-leAding cAuse Of deAth in the united stAtes. Over 15 milliOn AmericAns prOvide unpAid cAre fOr A persOn with Alzheimer’s Or Other dementiAs. pAyments fOr cAre Are estimAted tO be $200 billiOn in 2012.

Page 2: Alzheimer facts figures 2012

Alzheimer’s Association, 2012 Alzheimer’s Disease Facts and Figures, Alzheimer’s & Dementia, Volume 8, Issue 2

2012 Alzheimer’s Disease Facts and Figures provides a statistical resource for u.S. 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 information 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 focuses on the challenges of people with Alzheimer’s disease and other dementias who live alone.

AbOut this repOrt

Page 3: Alzheimer facts figures 2012

1 2012 Alzheimer’s Disease Facts and Figures

Specific information in this year’s Alzheimer’s Disease Facts and Figures includes:

•OverallnumberofAmericanswithAlzheimer’s

diseasenationallyandforeachstate.

•ProportionofwomenandmenwithAlzheimer’s

andotherdementias.

•Estimatesoflifetimeriskfordeveloping

Alzheimer’sdisease.

•Numberoffamilycaregivers,hoursofcareprovided,

economicvalueofunpaidcarenationallyand

foreachstate,andtheimpactofcaregivingon

caregivers.

•Useandcostsofhealthcare,long-termcareand

hospicecareforpeoplewithAlzheimer’sdiseaseand

otherdementias.

•NumberofdeathsduetoAlzheimer’sdisease

nationallyandforeachstate,anddeathratesbyage.

TheAppendicesdetailsourcesandmethodsused

toderivedatainthisreport.

Thisdocumentfrequentlycitesstatisticsthatapply

toindividualswithalltypesofdementia.When

possible,specificinformationaboutAlzheimer’s

diseaseisprovided;inothercases,thereference

maybeamoregeneraloneof“Alzheimer’sdisease

andotherdementias.”

Theconclusionsinthisreportreflectcurrently

availabledataonAlzheimer’sdisease.Theyarethe

interpretationsoftheAlzheimer’sAssociation.

Page 4: Alzheimer facts figures 2012

2 Contents 2012 Alzheimer’s Disease Facts and Figures

Overview of Alzheimer’s Disease

Dementia:DefinitionandSpecificTypes 5

Alzheimer’s Disease 7

SymptomsofAlzheimer’sDisease 7

DiagnosisofAlzheimer’sDisease 7

CausesofAlzheimer’sDisease 10

RiskFactorsforAlzheimer’sDisease 10

TreatmentofAlzheimer’sDisease 12

Prevalence

PrevalenceofAlzheimer’sDiseaseandOtherDementias 14

IncidenceandLifetimeRiskofAlzheimer’sDisease 16

EstimatesoftheNumberofPeoplewithAlzheimer’sDisease,byState 17

LookingtotheFuture 18

Mortality

DeathsfromAlzheimer’sDisease 23

State-by-StateDeathsfromAlzheimer’sDisease 25

DeathRatesbyAge 25

DurationofIllnessfromDiagnosistoDeath 25

Caregiving

UnpaidCaregivers 27

WhoaretheCaregivers? 27

CareProvidedbyEthnicCommunities 28

CaregivingTasks 28

DurationofCaregiving 31

HoursofUnpaidCareandEconomicValueofCaregiving 31

ImpactofCaregiving 32

PaidCaregivers 34

Contents

Page 5: Alzheimer facts figures 2012

3 2012 Alzheimer’s Disease Facts and Figures Contents

use and Costs of Health Care, Long-Term Care and Hospice

TotalPaymentsforHealthCare,Long-TermCareandHospice 39

UseandCostsofHealthCareServices 40

UseandCostsofLong-TermCareServices 44

Out-of-PocketCostsforHealthCareandLong-TermCareServices 48

UseandCostsofHospiceCare 49

ProjectionsfortheFuture 49

Special report: People with Alzheimer’s Disease and Other Dementias Who Live Alone

HowManyPeopleintheUnitedStateswithAlzheimer’sDiseaseandOtherDementiasLiveAlone? 51

RacialandGeographicDisparities 53

TypicalCharacteristicsofPeoplewithAlzheimer’sDiseaseandOtherDementiasWhoLiveAlone 53

RisksEncounteredbyPeoplewithAlzheimer’sDiseaseandOtherDementiasWhoLiveAlone 53

CaregivingforPeoplewithDementiaWhoLiveAlone 56

UnmetNeedsofPeoplewithAlzheimer’sDiseaseandOtherDementiasWhoLiveAlone 56

Conclusion 57

Appendices

EndNotes 58

References 61

Page 6: Alzheimer facts figures 2012

Alzheimer’s diseAse is the mOst cOmmOn type Of dementiA.

Overview Of Alzheimer’s diseAse

“Dementia” is an umbrella term describing a variety of diseases and conditions that develop when nerve cells in the brain die or no longer function normally. The death or malfunction of these nerve cells, called neurons, causes changes in one’s memory, behavior and ability to think clearly. In Alzheimer’s disease, these brain changes eventually impair an individual’s ability to carry out such basic bodily functions as walking and swallowing. Alzheimer’s disease is ultimately fatal.

Page 7: Alzheimer facts figures 2012

5

Dementia: Definition and Specific Types

Physiciansoftendefinedementiabasedonthecriteria

givenintheDiagnostic and Statistical Manual of Mental

Disorders, Fourth Edition (DSM-IV).(1) To meet DSM-IV

criteriafordementia,thefollowingarerequired:

•Symptomsmustincludedeclineinmemory and in at

leastoneofthefollowingcognitiveabilities:

1)Abilitytogeneratecoherentspeechorunderstand

spokenorwrittenlanguage.

2)Abilitytorecognizeoridentifyobjects,assuming

intactsensoryfunction.

3)Abilitytoexecutemotoractivities,assumingintact

motorabilitiesandsensoryfunctionandcomprehension

oftherequiredtask.

4)Abilitytothinkabstractly,makesoundjudgments

andplanandcarryoutcomplextasks.

•Thedeclineincognitiveabilitiesmustbesevere

enoughtointerferewithdailylife.

Toestablishadiagnosisofdementia,aphysicianmust

determinethecauseofthedementia-likesymptoms.

Someconditionshavesymptomsthatmimic

dementiabutthat,unlikedementia,canbereversed

withtreatment.Thesetreatableconditionsinclude

depression,delirium,sideeffectsfrommedications,

thyroidproblems,certainvitamindeficienciesand

excessiveuseofalcohol.Incontrast,dementiais

causedbyirreversibledamagetobraincells.

2012 Alzheimer’s Disease Facts and Figures Overview of Alzheimer’s Disease

table 1: Common Types of Dementia and Their Typical Characteristics

Type of Dementia Characteristics

Alzheimer’s disease

Vascular dementia

Mostcommontypeofdementia;accountsforanestimated60to80percentofcases.

Difficultyrememberingnamesandrecenteventsisoftenanearlyclinicalsymptom;apathy

anddepressionarealsooftenearlysymptoms.Latersymptomsincludeimpairedjudgment,

disorientation,confusion,behaviorchangesanddifficultyspeaking,swallowingandwalking.

NewcriteriaandguidelinesfordiagnosingAlzheimer’swereproposedandpublishedin2011.

TheyrecommendthatAlzheimer’sdiseasebeconsideredadiseasethatbeginswellbeforethe

developmentofsymptoms(seepages8to9).

Hallmarkabnormalitiesaredepositsoftheproteinfragmentbeta-amyloid(plaques)andtwisted

strandsoftheproteintau(tangles)aswellasevidenceofnervecelldamageanddeathinthebrain.

Previouslyknownasmulti-infarctorpost-strokedementia,vasculardementiaislesscommon

asasolecauseofdementiathanisAlzheimer’sdisease.

Impairedjudgmentorabilitytomakeplansismorelikelytobetheinitialsymptom,asopposed

tothememorylossoftenassociatedwiththeinitialsymptomsofAlzheimer’s.

Occursbecauseofbraininjuriessuchasmicroscopicbleedingandbloodvesselblockage.

Thelocationofthebraininjurydetermineshowtheindividual’sthinkingandphysicalfunctioning

areaffected.

Inthepast,evidenceofvasculardementiawasusedtoexcludeadiagnosisofAlzheimer’sdisease

(andviceversa).Thatpracticeisnolongerconsideredconsistentwithpathologicevidence,which

showsthatthebrainchangesofbothtypesofdementiacanbepresentsimultaneously.Whenany

twoormoretypesofdementiaarepresentatthesametime,theindividualisconsideredtohave

“mixeddementia.”

Page 8: Alzheimer facts figures 2012

6

table 1 (continued): Common Types of Dementia and Their Typical Characteristics

Type of Dementia Characteristics

Overview of Alzheimer’s Disease 2012 Alzheimer’s Disease Facts and Figures

PeoplewithDLBhavesomeofthesymptomscommoninAlzheimer’s,butaremorelikely

thanpeoplewithAlzheimer’stohaveinitialorearlysymptomssuchassleepdisturbances,

well-formedvisualhallucinations,andmusclerigidityorotherparkinsonianmovementfeatures.

Lewybodiesareabnormalaggregations(orclumps)oftheproteinalpha-synuclein.When

theydevelopinapartofthebraincalledthecortex,dementiacanresult.Alpha-synucleinalso

aggregatesinthebrainsofpeoplewithParkinson’sdisease,buttheaggregatesmayappearin

apatternthatisdifferentfromDLB.

ThebrainchangesofDLBalonecancausedementia,ortheycanbepresentatthesametimeas

thebrainchangesofAlzheimer’sdiseaseand/orvasculardementia,witheachentitycontributing

tothedevelopmentofdementia.Whenthishappens,theindividualissaidtohave“mixeddementia.”

CharacterizedbythehallmarkabnormalitiesofAlzheimer’sandanothertypeofdementia—

mostcommonly,vasculardementia,butalsoothertypes,suchasdementiawithLewybodies.

Recentstudiessuggestthatmixeddementiaismorecommonthanpreviouslythought.

AsParkinson’sdiseaseprogresses,itoftenresultsinaseveredementiasimilartoDLB

orAlzheimer’s.

Problemswithmovementareacommonsymptomearlyinthedisease.

Alpha-synucleinaggregatesarelikelytobegininanareadeepinthebraincalledthesubstantia

nigra.Theaggregatesarethoughttocausedegenerationofthenervecellsthatproduce

dopamine.

TheincidenceofParkinson’sdiseaseisaboutone-tenththatofAlzheimer’sdisease.

IncludesdementiassuchasbehavioralvariantFTLD,primaryprogressiveaphasia,Pick’sdisease

andprogressivesupranuclearpalsy.

Typicalsymptomsincludechangesinpersonalityandbehavioranddifficultywithlanguage.

Nervecellsinthefrontandsideregionsofthebrainareespeciallyaffected.Nodistinguishing

microscopicabnormalityislinkedtoallcases.

ThebrainchangesofbehavioralvariantFTLDmaybepresentatthesametimeasthebrain

changesofAlzheimer’s,butpeoplewithbehavioralvariantFTLDgenerallydevelopsymptomsat

ayoungerage(ataboutage60)andsurviveforfeweryearsthanthosewithAlzheimer’s.

Rapidlyfataldisorderthatimpairsmemoryandcoordinationandcausesbehaviorchanges.

Resultsfromaninfectiousmisfoldedprotein(prion)thatcausesotherproteinsthroughoutthe

braintomisfoldandthusmalfunction.

VariantCreutzfeldt-Jakobdiseaseisbelievedtobecausedbyconsumptionofproductsfrom

cattleaffectedbymadcowdisease.

Symptomsincludedifficultywalking,memorylossandinabilitytocontrolurination.

Causedbythebuildupoffluidinthebrain.

Cansometimesbecorrectedwithsurgicalinstallationofashuntinthebraintodrain

excessfluid.

Dementia with Lewy bodies (DLB)

Mixed dementia

Parkinson’s disease

Frontotemporal lobar degeneration (FTLD)

Creutzfeldt-Jakob disease

Normal pressure hydrocephalus

Page 9: Alzheimer facts figures 2012

7

Whenanindividualhasirreversibledementia,a

physicianmustconductteststoidentifytheformof

dementiathatiscausingsymptoms.Differenttypes

ofdementiaareassociatedwithdistinctsymptom

patternsandbrainabnormalities,asdescribedin

Table1.However,increasingevidencefromlong-term

observationalandautopsystudiesindicatesthatmany

peoplewithdementia,especiallyelderlyindividuals,

havebrainabnormalitiesassociatedwithmorethan

onetypeofdementia.(2-6)

Alzheimer’s Disease

Alzheimer’sdiseasewasfirstidentifiedmorethan

100yearsago,butresearchintoitssymptoms,causes,

riskfactorsandtreatmenthasgainedmomentumonly

inthelast30years.Althoughresearchhasrevealeda

greatdealaboutAlzheimer’s,theprecisephysiologic

changesthattriggerthedevelopmentofAlzheimer’s

diseaselargelyremainunknown.Theonlyexceptions

arecertainrare,inheritedformsofthediseasecaused

byknowngeneticmutations.

Symptoms of Alzheimer’s Disease

Alzheimer’sdiseaseaffectspeopleindifferentways,

butthemostcommonsymptompatternbeginswith

graduallyworseningabilitytoremembernew

information.Thisoccursbecausedisruptionofbrain

cellfunctionusuallybeginsinbrainregionsinvolvedin

formingnewmemories.Asdamagespreads,

individualsexperienceotherdifficulties.Thefollowing

arewarningsignsofAlzheimer’s:

•Memorylossthatdisruptsdailylife.

•Challengesinplanningorsolvingproblems.

•Difficultycompletingfamiliartasksathome,

atworkoratleisure.

•Confusionwithtimeorplace.

•Troubleunderstandingvisualimagesand

spatialrelationships.

•Newproblemswithwordsinspeakingorwriting.

•Misplacingthingsandlosingtheabilityto

retracesteps.

•Decreasedorpoorjudgment.

•Withdrawalfromworkorsocialactivities.

•Changesinmoodandpersonality.

Formoreinformationaboutthewarningsignsof

Alzheimer’s,visitwww.alz.org/10signs.

IndividualsprogressfrommildAlzheimer’sdiseaseto

moderateandseverediseaseatdifferentrates.Asthe

diseaseprogresses,theindividual’scognitiveand

functionalabilitiesdecline.InadvancedAlzheimer’s,

peopleneedhelpwithbasicactivitiesofdailyliving,

suchasbathing,dressing,eatingandusingthe

bathroom.Thoseinthefinalstagesofthediseaselose

theirabilitytocommunicate,failtorecognizeloved

onesandbecomebed-boundandreliantonaround-

the-clockcare.Whenanindividualhasdifficulty

movingbecauseofAlzheimer’sdisease,theyaremore

vulnerabletoinfections,includingpneumonia(infection

ofthelungs).Alzheimer’sdiseaseisultimatelyfatal,

andAlzheimer’s-relatedpneumoniaisoftena

contributingfactor.

Diagnosis of Alzheimer’s Disease

AdiagnosisofAlzheimer’sdiseaseismostcommonly

madebyanindividual’sprimarycarephysician.The

physicianobtainsamedicalandfamilyhistory,

includingpsychiatrichistoryandhistoryofcognitive

andbehavioralchanges.Ideally,afamilymemberor

otherindividualclosetothepatientisavailableto

provideinput.Thephysicianalsoconductscognitive

testsandphysicalandneurologicexaminations.In

addition,thepatientmayundergomagneticresonance

imaging(MRI)scanstoidentifybrainchanges,suchas

thepresenceofatumororevidenceofastroke,that

couldcausecognitivedecline.

2012 Alzheimer’s Disease Facts and Figures Overview of Alzheimer’s Disease

Page 10: Alzheimer facts figures 2012

8

Thenewcriteriaandguidelinesupdate,

refineandbroadenguidelinespublished

in1984bytheAlzheimer’sAssociation

andtheNationalInstituteofNeurological

DisordersandStroke.Thenewcriteria

andguidelinesresultfromworkthat

beganin2009,whenmorethan

40Alzheimer’sresearchersandclinicians

fromaroundtheglobebegananin-

depthreviewofthe1984criteriato

decidehowtheymightbeimprovedby

incorporatingscientificadvancesfrom

thelastthreedecades.

It is important to note that these are

recommended criteria and guidelines.

More research is needed, especially

biomarker research, before the new

criteria and guidelines can be used in

clinical settings, such as in a doctor’s

office.

Differences Between the Original and New Criteria

The1984criteriawerebasedchieflyona

doctor’sclinicaljudgmentaboutthe

causeofapatient’ssymptoms,taking

intoaccountreportsfromthepatient,

familymembersandfriends;resultsof

cognitivetesting;andgeneral

neurologicalassessment.Thenew

criteriaandguidelinesincorporatetwo

notablechanges:

(1)Theyidentifythreestagesof

Alzheimer’sdisease,withthefirst

occurringbeforesymptomssuchas

memorylossdevelopandbeforeone’s

abilitytocarryouteverydayactivitiesis

affected.Incontrast,the1984criteria

requirememorylossandadeclinein

thinkingabilitiessevereenoughtoaffect

dailylifebeforeAlzheimer’sdiseasecan

bediagnosed.

(2)Theyincorporatebiomarkertests.

Abiomarkerissomethinginthebody

thatcanbemeasuredandthataccurately

indicatesthepresenceorabsenceof

disease,ortheriskoflaterdeveloping

adisease.Forexample,bloodglucose

levelisabiomarkerofdiabetes,and

cholesterollevelisabiomarkerofheart

diseaserisk.Levelsofcertainproteinsin

fluid(forexample,levelsofbeta-amyloid

andtauinthecerebrospinalfluidand

blood)areamongseveralfactorsbeing

studiedaspossiblebiomarkersfor

Alzheimer’s.

The Three Stages of Alzheimer’s Disease Proposed by the New Criteria and Guidelines for the Diagnosis of Alzheimer’s Disease

ThethreestagesofAlzheimer’sdisease

identifiedinthenewcriteriaand

guidelinesarepreclinicalAlzheimer’s

disease,mildcognitiveimpairment(MCI)

due to Alzheimer’s disease and dementia

duetoAlzheimer’sdisease.Thesestages

aredifferentfromthestagesnowusedto

describeAlzheimer’s.Currently,the

stagesofAlzheimer’sareoftendescribed

asmild/early-stage,moderate/mid-stage

orsevere/late-stage.Thenewcriteria

proposethatAlzheimer’sdiseasebegins

beforethemild/early-stageandthatnew

technologieshavethepotentialto

identifyAlzheimer’s-relatedbrain

changesthatoccurbeforemild/early-

stagedisease.Whentheseveryearly

changesinthebrainareidentified,an

individualdiagnosedusingthenew

criteriawouldbesaidtohavepreclinical

Alzheimer’sdiseaseorMCIdueto

Alzheimer’s.Thethirdstageofthenew

criteria, dementia due to Alzheimer’s

disease,encompassesallstagesof

Alzheimer’sdiseaseasdescribedtoday,

frommild/early-stagetosevere/

late-stage.

Preclinical Alzheimer’s disease—Inthis

stage,individualshavemeasurable

changesinthebrain,cerebrospinalfluid

and/orblood(biomarkers)thatindicate

theearliestsignsofdisease,butthey

a modern diagnosis of alzheimer’s disease: ProPosed new Criteria and guidelines

In 2011, the National Institute on Aging (NIA) and the Alzheimer’s Association recommended new diagnostic criteria and guidelines for Alzheimer’s disease.(7-10)

Overview of Alzheimer’s Disease 2012 Alzheimer’s Disease Facts and Figures

Page 11: Alzheimer facts figures 2012

9

havenotyetdevelopedsymptomssuch

asmemoryloss.Thispreclinicalor

pre-symptomaticstagereflectscurrent

thinkingthatAlzheimer’sbeginscreating

changesinthebrainasmanyas20years

beforesymptomsoccur.Althoughthe

newcriteriaandguidelinesidentify

preclinicaldiseaseasastageof

Alzheimer’s,theydonotestablish

diagnostic criteria that doctors can use

now.Rather,theystatethatadditional

biomarkerresearchisneededbeforethis

stageofAlzheimer’scanbediagnosed.

MCI due to Alzheimer’s disease—

IndividualswithMCIhavemildbut

measurablechangesinthinkingabilities

thatarenoticeabletothepersonaffected

andtofamilymembersandfriends,but

thatdonotaffecttheindividual’sability

tocarryouteverydayactivities.Studies

indicatethatasmanyas10to20percent

ofpeopleage65andolderhaveMCI.(11-13)

Itisestimatedthatasmanyas15percent

ofpeoplewhoseMCIsymptomscause

them enough concern to contact their

doctor’sofficeforanexamgoonto

developdementiaeachyear.Fromthis

estimate,nearlyhalfofallpeoplewho

havevisitedadoctoraboutMCI

symptomswilldevelopdementiainthree

orfouryears.(14)

Thisestimateishigherthanfor

individualswhoseMCIisidentified

throughcommunitysampling(andnotas

aresultofavisittoadoctorbecauseof

cognitiveconcerns).Forthese

individuals,therateofprogressionmay

reach10percentperyear.(15) Further

cognitivedeclineismorelikelyamong

individualswhoseMCIinvolvesmemory

problemsthaninthosewhoseMCIdoes

notinvolvememoryproblems.Overone

year,mostindividualswithMCIwhoare

identifiedthroughcommunitysampling

remaincognitivelystable.Some,primarily

thosewithoutmemoryproblems,

experienceanimprovementincognition

orreverttonormalcognitivestatus.(16)

ItisunclearwhysomepeoplewithMCI

developdementiaandothersdonot.

WhenanindividualwithMCIgoesonto

developdementia,manyscientists

believetheMCIisactuallyanearlystage

oftheparticularformofdementia,rather

thanaseparatecondition.

Thenewcriteriaandguidelines

recommendbiomarkertestingforpeople

withMCItolearnwhethertheyhave

brainchangesthatputthemathighrisk

ofdevelopingAlzheimer’sdiseaseor

otherdementias.Ifitcanbeshownthat

changesinthebrain,cerebrospinalfluid

and/orbloodarecausedbyphysiologic

processesassociatedwithAlzheimer’s,

thenewcriteriaandguidelines

recommendadiagnosisofMCIdueto

Alzheimer’sdisease.Beforedoctorscan

makesuchadiagnosis,however,

researchersmustprovethatthe

biomarkertestsaccuratelyindicaterisk.

Dementia due to Alzheimer’s

disease—Thisstageischaracterizedby

memory,thinkingandbehavioral

symptomsthatimpairaperson’sability

tofunctionindailylifeandthatare

causedbyAlzheimer’sdisease-related

processes.

Biomarker Tests

Thenewcriteriaandguidelinesidentify

twobiomarkercategories:(1)biomarkers

showingthelevelofbeta-amyloid

accumulationinthebrainand(2)

biomarkersshowingthatnervecellsin

thebrainareinjuredoractually

degenerating.

Researchersbelievethatfuture

treatmentstosloworstopthe

progressionofAlzheimer’sdiseaseand

preservebrainfunction(called“disease-

modifying”treatments)willbemost

effectivewhenadministeredduringthe

preclinicalandMCIstagesofthedisease.

Inthefuture,biomarkertestswillbe

essentialtoidentifywhichindividualsare

intheseearlystagesandshouldreceive

disease-modifyingtreatmentwhenit

becomesavailable.Theyalsowillbe

criticalformonitoringtheeffectsof

treatment.

2012 Alzheimer’s Disease Facts and Figures Overview of Alzheimer’s Disease

Page 12: Alzheimer facts figures 2012

10

Causes of Alzheimer’s Disease

ThecauseorcausesofAlzheimer’sdiseaseare

notyetknown.However,mostexpertsagreethat

Alzheimer’s,likeothercommonchronicdiseases,

developsasaresultofmultiplefactorsratherthan

asinglecause.

Thesefactorsincludeavarietyofbrainchangesthat

beginasmanyas20yearsbeforesymptomsappear.

Increasingly,thetimebetweentheinitialbrainchanges

ofAlzheimer’sandthesymptomsofadvanced

Alzheimer’sisconsideredbyscientiststorepresent

the“continuum”ofAlzheimer’s.Atthestartofthe

continuum,theindividualisabletofunctionnormally

despitethesebrainchanges.Furtheralongthe

continuum,thebraincannolongercompensateforthe

increasedneuronaldamagecausedbybrainchanges,

andtheindividualshowssubtledeclineincognitive

function.Insomecases,physiciansidentifythispoint

inthecontinuumasMCI.Towardtheendofthe

continuum, neuronal damage and death is so

significantthattheindividualshowsobviouscognitive

decline,suchasmemorychangesorconfusionasto

timeorplace.Atthispoint,physiciansfollowingthe

1984criteriaforAlzheimer’swoulddiagnosethe

individualashavingAlzheimer’sdisease.Thenew

criteriaandguidelinesproposethattheentire

continuum,notjustthesymptomaticpointsonthe

continuum,representsAlzheimer’s.Researchers

continuetoexplorewhysomeindividualswhohave

thebrainchangesassociatedwiththeearlierpointsof

thecontinuumdonotgoontodeveloptheovert

symptomsofthelaterpointsofthecontinuum.

Amongthebrainchangesbelievedtocontributetothe

developmentofAlzheimer’saretheaccumulationof

theproteinbeta-amyloidoutsideneuronsinthebrain

andtheaccumulationoftheproteintauinsideneurons.

Ahealthyadultbrainhas100billionneurons,eachwith

long,branchingextensions.Theseextensionsenable

individualneuronstoformspecializedconnections

withotherneurons.Attheseconnections,called

synapses,informationflowsintinychemicalpulses

releasedbyoneneuronanddetectedbythereceiving

neuron.Thebraincontains100trillionsynapses.They

allowsignalstotravelrapidlyandconstantlythrough

thebrain’scircuits,creatingthecellularbasisof

memories, thoughts, sensations, emotions,

movementsandskills.

InAlzheimer’sdisease,informationtransferat

synapsesbeginstofail,thenumberofsynapses

declinesandneuronseventuallydie.Theaccumulation

ofbeta-amyloidoutsideneuronsisbelievedtointerfere

withtheneuron-to-neuroncommunicationofsynapses

andtocontributetocelldeath.Insidetheneuron,

abnormallyhighlevelsoftauformtanglesthatblock

thetransportofnutrientsandotheressential

moleculesthroughoutthecell.Thisprocessisalso

believedtocontributetocelldeath.Brainsfrompeople

withadvancedAlzheimer’sshowdramaticshrinkage

fromcelllossandwidespreaddebrisfromdeadand

dyingneurons.

OneknowncauseofAlzheimer’sisgeneticmutation.

AsmallpercentageofAlzheimer’sdiseasecases,

probablylessthan1percent,iscausedbythreeknown

geneticmutations.Thesemutationsinvolvethegene

fortheamyloidprecursorproteinandthegenesforthe

presenilin1andpresenilin2proteins.Inheritinganyof

thesegeneticmutationsguaranteesthatanindividual

willdevelopAlzheimer’sdisease.Insuchindividuals,

thediseasetendstodevelopbeforeage65,

sometimesinindividualsasyoungasage30.

risk Factors for Alzheimer’s Disease

ThegreatestriskfactorforAlzheimer’sdiseaseis

advancingage,butAlzheimer’sisnotanormalpartof

aging.MostpeoplewithAlzheimer’sdiseaseare

diagnosedatage65orolder.Theseindividualsaresaid

tohavelate-onsetAlzheimer’sdisease.However,

peopleyoungerthanage65canalsodevelopthe

disease.WhenAlzheimer’sdevelopsinaperson

youngerthanage65,itisreferredtoas“younger-

onset”(or“early-onset”)Alzheimer’s.

Overview of Alzheimer’s Disease 2012 Alzheimer’s Disease Facts and Figures

Page 13: Alzheimer facts figures 2012

2012 Alzheimer’s Disease Facts and Figures Overview of Alzheimer’s Disease 11

Advancingageisnottheonlyriskfactorfor

Alzheimer’sdisease.Thefollowingsectionsdescribe

otherriskfactors.

Family History Individualswhohaveaparent,brotherorsisterwith

Alzheimer’saremorelikelytodevelopthediseasethan

thosewhodonothaveafirst-degreerelativewith

Alzheimer’s.(17-19)Thosewhohavemorethanone

first-degreerelativewithAlzheimer’sareateven

higherriskofdevelopingthedisease.(20)When

diseasesruninfamilies,heredity(genetics),shared

environmental/lifestylefactorsorbothmayplayarole.

Apolipoprotein E-e4 (APOE-e4) Individualswiththee4formofthegeneapolipo- proteinEareatincreasedriskofdeveloping

Alzheimer’sdisease.APOE-e4isoneofthreecommonforms(e2, e3ande4)oftheAPOEgene,whichprovidestheblueprintforaproteinthatcarries

cholesterolinthebloodstream.Everyoneinheritsone

formoftheAPOEgenefromeachparent.Thosewho

inheritoneAPOE-e4genehaveincreasedriskofdevelopingAlzheimer’sdiseaseandofdevelopingitat

anearlieragethanthosewhoinheritthee2 or e3formsoftheAPOEgene.Thosewhoinherittwo

APOE-e4geneshaveanevenhigherrisk.UnlikeinheritingaknowngeneticmutationforAlzheimer’s,

inheritingoneortwocopiesofthisformoftheAPOE

genedoesnotguaranteethatanindividualwilldevelop

Alzheimer’s.

Mild Cognitive Impairment (MCI) MCIisaconditioninwhichanindividualhasmildbut

measurablechangesinthinkingabilitiesthatare

noticeabletothepersonaffectedandtofamily

membersandfriends,butthatdonotaffectthe

individual’sabilitytocarryouteverydayactivities.

PeoplewithMCI,especiallyMCIinvolvingmemory

problems,aremorelikelytodevelopAlzheimer’sand

otherdementiasthanpeoplewithoutMCI.Insome

cases,suchaswhenMCIiscausedbycertain

medications,MCIcanbereversed.Inothercases,

MCIrevertstonormalcognitiononitsownorremains

stable.Therefore,it’simportantthatpeople

experiencingcognitivedeclineseekhelpassoonas

possibleforaccuratediagnosisandtreatment.Thenew

criteriaandguidelinesfordiagnosisofAlzheimer’s

disease,publishedin2011,(7-10) suggest that in some

casesMCIisactuallyanearlystageofAlzheimer’s.

Formoreinformation,seepages8to9.

Cardiovascular Disease Risk Factors Growingevidencesuggeststhatthehealthofthebrain

iscloselylinkedtotheoverallhealthoftheheartand

bloodvessels.Thebrainisnourishedbyoneofthe

body’srichestnetworksofbloodvessels.Ahealthy

hearthelpsensurethatenoughbloodispumped

throughthesebloodvesselstothebrain,andhealthy

bloodvesselshelpensurethatthebrainissuppliedwith

theoxygen-andnutrient-richblooditneedsto

functionnormally.

Somedataindicatethatcardiovasculardiseaserisk

factors,suchasphysicalinactivity,highcholesterol

(especiallyinmidlife),diabetes,smokingandobesity,

areassociatedwithahigherriskofdeveloping

Alzheimer’sandotherdementias.(21-31)Unlikegenetic

riskfactors,manyofthesecardiovasculardiseaserisk

factorsare modifiable—thatis,theycanbechangedto

decreasethelikelihoodofdevelopingcardiovascular

diseaseand,possibly,thecognitivedeclineassociated

withAlzheimer’sandotherformsofdementia.

Social Engagement and Diet Additionalstudiessuggestthatothermodifiablefactors,

suchasremainingmentallyandsociallyactiveand

consumingadietlowinsaturatedfatsandrichin

vegetables,maysupportbrainhealth.(32-33)However,

therearefewerofthesetypesofstudiesthanstudiesof

cardiovascularriskfactors,andtheyofteninvolvea

smallernumberofparticipantsthancardiovascular

studies.Asaresult,theirconclusionsaregenerally

consideredlessconvincingthanthoseofcardiovascular

studies.Thus,comparedwithotherriskfactors,

relativelylittleisknownabouthowsocialengagement

ordietmayaffectAlzheimer’srisk.

Page 14: Alzheimer facts figures 2012

12

Head Trauma and Traumatic Brain Injury (TBI) Headinjury,headtraumaandTBIareassociatedwith

anincreasedriskofAlzheimer’sdiseaseandother

dementias.Moderateheadinjuriesareassociatedwith

twicetheriskofdevelopingAlzheimer’scompared

withnoheadinjuries,andsevereheadinjuriesare

associatedwith4.5timestherisk.(34-35)Moderatehead

injuryisdefinedasaheadinjuryresultinginlossof

consciousnessorpost-traumaticamnesialastingmore

than30minutes;ifeitheroftheselastsmorethan

24hours,theinjuryisconsideredsevere.These

increasedriskshavenotbeenshownforindividuals

experiencingmildheadinjuryoranynumberof

commonmishapssuchasbumpingone’sheadwhile

exitingacar.Groupsthatexperiencerepeatedhead

injuries,suchasboxers,footballplayersandcombat

veterans,maybeatincreasedriskofdementia,

late-lifecognitiveimpairmentandevidenceoftau

tangles(ahallmarkofAlzheimer’s)atautopsy.(36-41)

SomestudiessuggestthatAPOE-e4carrierswhoexperiencemoderateorsevereheadinjuryareat

higherriskofdevelopingAlzheimer’sthanAPOE-e4carrierswhodonothaveahistoryofmoderateor

severeheadinjury.(34,42-43) Additional research is

neededtobetterunderstandtheassociationbetween

braininjuryandincreasedriskofAlzheimer’s.

Treatment of Alzheimer’s Disease

NotreatmentisavailabletosloworstopAlzheimer’s

disease.TheU.S.FoodandDrugAdministrationhas

approvedfivedrugsthattemporarilyimprove

symptoms.Theeffectivenessofthesedrugsvaries

acrossthepopulation.Noneofthetreatments

availabletodayalterstheunderlyingcourseofthis

terminaldisease.However,researchersaroundthe

worldarestudyingdozensoftreatmentstrategies

thatmayhavethepotentialtochangethecourseof

thedisease.

Despitethelackofdisease-modifyingtherapies,

studieshaveconsistentlyshownthatactivemedical

managementofAlzheimer’sandotherdementiascan

significantlyimprovequalityoflifethroughallstages

ofthediseaseforindividualswithdementiaandtheir

caregivers.(44-46)Activemanagementincludes

(1)appropriateuseofavailabletreatmentoptions,

(2)effectivemanagementofcoexistingconditions,

(3)coordinationofcareamongphysicians,otherhealth

careprofessionalsandlaycaregivers,(4)participation

inactivitiesandadultdaycareprogramsand(5)taking

partinsupportgroupsandsupportiveservicessuch

ascounseling.

Overview of Alzheimer’s Disease 2012 Alzheimer’s Disease Facts and Figures

Page 15: Alzheimer facts figures 2012

prevAlence

One in eight older Americans has Alzheimer’s disease.

milliOns Of AmericAns hAve Alzheimer’s diseAse And Other dementiAs.

Page 16: Alzheimer facts figures 2012

14

ThenumberofAmericanswithAlzheimer’sdisease

andotherdementiaswillgroweachyearasthe

proportionoftheU.S.populationoverage65

continuestoincrease.Thenumberwillescalaterapidly

incomingyearsasthebabyboomgenerationages.

Estimatesfromselectedstudiesontheprevalenceand

characteristicsofpeoplewithAlzheimer’sandother

dementiasvarydependingonhoweachstudywas

conducted.Datafromseveralstudiesareusedinthis

sectiontodescribetheprevalenceoftheseconditions

andtheproportionofpeoplewiththeconditionsby

gender,raceandethnicity,andyearsofeducation.

Datasourcesandstudymethodsaredescribedin

theAppendices.

Prevalence of Alzheimer’s Disease and Other Dementias

Anestimated5.4millionAmericansofallageshave

Alzheimer’sdiseasein2012.Thisfigureincludes

5.2millionpeopleage65andolder(47),A1 and 200,000

individualsunderage65whohaveyounger-onset

Alzheimer’s.(48)

•Oneineightpeopleage65andolder(13percent)

hasAlzheimer’sdisease.A2

•Nearlyhalfofpeopleage85andolder(45percent)

haveAlzheimer’sdisease.A3

•OfthosewithAlzheimer’sdisease,anestimated

4percentareunderage65,6percentare65to74,

44percentare75to84,and46percentare85

orolder.(47),A4

Theestimatednumbersforpeopleover65comefrom

theChicagoHealthandAgingProject(CHAP),

apopulation-basedstudyofchronichealthdiseasesof

olderpeople.In2009,theNationalInstituteonAging

(NIA)andtheAlzheimer’sAssociationconveneda

conferencetoexaminediscrepanciesamongestimates

fromCHAPandotherstudies,includingtheAging,

Demographics,andMemoryStudy(ADAMS),a

nationallyrepresentativesampleofolderadults.(49)

Apanelofexpertsconcludedthatthediscrepancies

inthepublishedestimatesarosefromdifferences

inhowthosestudiescountedwhohadAlzheimer’s

disease.Whenthesamediagnosticcriteriawere

appliedacrossstudies,theestimateswerevery

similar.(50),A5

Nationalestimatesoftheprevalenceofallformsof

dementiaarenotavailablefromCHAP.Basedon

estimatesfromADAMS,13.9percentofpeopleage

71andolderintheUnitedStateshavedementia.(49)

Thisnumberwouldbehigherusingthebroader

diagnosticcriteriaofCHAP.

TheestimatesfromCHAPandADAMSarebasedon

commonlyacceptedcriteriafordiagnosingAlzheimer’s

diseasethathavebeenusedsince1984.In2009,an

expertworkgroupwasconvenedbytheAlzheimer’s

AssociationandtheNIAtorecommendupdated

diagnosticcriteria,asdescribedintheOverview

(pages8to9).Itisunclearexactlyhowthesenew

criteria,ifadopted,couldchangetheestimated

prevalenceofAlzheimer’s.However,ifAlzheimer’s

diseasecanbedetectedearlier,inthepreclinicalstage

asdefinedbythenewcriteria,thenumberofpeople

reportedtohaveAlzheimer’sdiseasewouldbelarger

thanwhatispresentedinthisreport.

PrevalencestudiessuchasCHAPandADAMSare

designedsothatallindividualswithdementiaare

detected.Butinthecommunity,onlyabouthalf

ofthosewhowouldmeetthediagnosticcriteria

forAlzheimer’sdiseaseorotherdementiashave

beendiagnosed.(51)BecauseAlzheimer’sdiseaseis

underdiagnosed,morethanhalfofthe5.4million

AmericanswithAlzheimer’smaynotknowthey

haveit.

Prevalence of Alzheimer’s Disease and Other Dementias in Women and Men

MorewomenthanmenhaveAlzheimer’sdiseaseand

otherdementias.Almosttwo-thirdsofAmericanswith

Alzheimer’sarewomen.A6Ofthe5.2millionpeople

overage65withAlzheimer’sintheUnitedStates,

Prevalence 2012 Alzheimer’s Disease Facts and Figures

Page 17: Alzheimer facts figures 2012

15

3.4millionarewomenand1.8millionaremen.A6

BasedonestimatesfromADAMS,16percentof

womenage71andolderhaveAlzheimer’sdiseaseor

otherdementiascomparedwith11percentofmen.(49,52)

Thelargerproportionofolderwomenwhohave

Alzheimer’sdiseaseorotherdementiasisprimarily

explainedbythefactthatwomenlivelongeron

averagethanmen.(52-53)Manystudiesoftheage-

specificincidence(developmentofnewcases)of

Alzheimer’s disease(53-59) or any dementia(54-56,60-61)

havefoundnosignificantdifferencebygender.Thus,

womenare notmorelikelythanmentodevelop

dementiaatanygivenage.

Prevalence of Alzheimer’s Disease and Other Dementias by Years of education

Peoplewithfeweryearsofeducationappeartobeat

higherriskforAlzheimer’sandotherdementiasthan

thosewithmoreyearsofeducation.Prevalenceand

incidencestudiesshowthathavingfeweryearsof

educationisassociatedwithagreaterlikelihoodof

havingdementia(49,62)andagreaterriskofdeveloping

dementia.(55,58,61,63-64)

Someresearchersbelievethatahigherlevelof

educationprovidesa“cognitivereserve”thatenables

individualstobettercompensateforchangesin

thebrainthatcouldresultinAlzheimer’soranother

dementia.(65-66)However,othersbelievethatthe

increasedriskofdementiaamongthosewithlower

educationalattainmentmaybeexplainedbyother

factorscommontopeopleinlowersocioeconomic

groups,suchasincreasedriskfordiseaseingeneral

andlessaccesstomedicalcare.(67)

Prevalence of Alzheimer’s Disease and Other Dementias in Older Whites, African-Americans and Hispanics

WhilemostpeopleintheUnitedStateslivingwith

Alzheimer’sandotherdementiasarenon-Hispanic

whites,olderAfrican-AmericansandHispanicsare

proportionatelymorelikelythanolderwhitestohave

Alzheimer’sdiseaseandotherdementias.(68-69)

DataindicatethatintheUnitedStates,olderAfrican-

Americansareprobablyabouttwiceaslikelytohave

Alzheimer’sandotherdementiasasolderwhites,(70)

andHispanicsareaboutoneandone-halftimesas

likelytohaveAlzheimer’sandotherdementiasasolder

whites.(62)Figure1showstheestimatedprevalence

foreachgroup,byage,fromtheWashingtonHeights-

InwoodColumbiaAgingProject.

Despitesomeevidenceofracialdifferencesinthe

influenceofgeneticriskfactorsforAlzheimer’sand

otherdementias,geneticfactorsdonotappearto

accountfortheselargeprevalencedifferencesacross

racialgroups.(71) Instead, health conditions such as

highbloodpressureanddiabetesthatincreaseone’s

riskforAlzheimer’sdiseaseandotherdementiasare

moreprevalentinAfrican-AmericanandHispanic

communities.Lowerlevelsofeducationandother

socioeconomic characteristics in these communities

mayalsoincreaserisk.Somestudiessuggestthat

differencesbasedonraceandethnicitydonotpersist

indetailedanalysesthataccountforthesefactors.(49,55)

Thereisevidencethatmisseddiagnosesaremore

commonamongolderAfrican-Americansand

Hispanicsthanamongolderwhites.(72-73)Forexample,

a2006studyofMedicarebeneficiariesfoundthat

Alzheimer’sdiseaseorotherdementiashadbeen

diagnosedin9.6percentofwhitebeneficiaries,

12.7percentofAfrican-Americanbeneficiariesand

14percentofHispanicbeneficiaries.(74) Although rates

ofdiagnosiswerehigheramongAfrican-Americans

andHispanicsthanamongwhites,thedifference

wasnotasgreataswouldbeexpectedbasedonthe

estimateddifferencesfoundinprevalencestudies,

whicharedesignedtodetectallpeoplewhohave

dementia.Thisdisparityisofincreasingconcern

becausetheproportionofolderAmericanswhoare

African-AmericanandHispanicisprojectedtogrow

incomingyears.(75)Ifthecurrentracialandethnic

disparitiesindiagnosticratescontinue,theproportion

ofindividualswithundiagnoseddementiawillincrease.

2012 Alzheimer’s Disease Facts and Figures Prevalence

Page 18: Alzheimer facts figures 2012

16 Prevalence 2012 Alzheimer’s Disease Facts and Figures

Incidence and Lifetime Risk of Alzheimer’s Disease

Whileprevalenceisthenumberofexistingcasesof

adiseaseinapopulationatagiventime,incidence

isthenumberofnewcasesofadiseaseinagiven

timeperiod.Theestimatedannualincidence(rateof

developingdiseaseinaone-yearperiod)ofAlzheimer’s

diseaseappearstoincreasedramaticallywithage,

fromapproximately53newcasesper1,000people

age65to74,to170newcasesper1,000peopleage

75to84,to231newcasesper1,000peopleoverage

85(the“oldest-old”).(76)Somestudieshavefoundthat

incidencelevelsoffafterage90,butthesefindingsare

controversial.Arecentanalysisindicatesthatdementia

incidencemaycontinuetoincreaseandthatprevious

observationsofalevelingoffofincidenceamongthe

oldest-oldmaybeduetosparsedataforthisgroup.(77)

Becauseoftheincreaseinthenumberofpeopleover65

intheUnitedStates,theannualincidenceofAlzheimer’s

andotherdementiasisprojectedtodoubleby2050.(76)

•Every68seconds,someoneinAmericadevelops

Alzheimer’s.A7

•Bymid-century,someoneinAmericawilldevelopthe

diseaseevery33seconds.A7

Lifetimeriskistheprobabilitythatsomeoneofagivenage

developsaconditionduringtheirremaininglifespan.Data

fromtheoriginalFraminghamStudypopulationwereused

toestimatelifetimerisksofAlzheimer’sdiseaseandof

anydementia.(78), A8Startingin1975,nearly2,800people

fromtheFraminghamStudywhowereage65andfreeof

dementiawerefollowedforupto29years.Thestudyfound

that65-year-oldwomenwithoutdementiahada20percent

chanceofdevelopingdementiaduringtheremainderof

theirlives(estimatedlifetimerisk),comparedwitha

17percentchanceformen.ForAlzheimer’s,theestimated

lifetimeriskwasnearlyoneinfive(17.2percent)forwomen

comparedwithnearlyonein10(9.1percent)formen.(78),A9

Figure2presentslifetimerisksofAlzheimer’sformen

andwomenofspecificages.Aspreviouslynoted,these

differencesinlifetimerisksbetweenwomenandmenare

largelyduetowomen’slongerlifeexpectancy.

figure 1: Proportion of People Age 65 and Older with Alzheimer’s Disease and Other Dementias, by Race/Ethnicity, Washington Heights-Inwood Columbia Aging Project, 2006

70

60

50

40

30

20

10

0

9.12.9 7.5

Percentage WhiteAfrican-AmericanHispanic

10.9

19.9

27.930.2

58.662.9

CreatedfromdatafromGurlandetal.(62)

Age 65to74 75to84 85+

Page 19: Alzheimer facts figures 2012

17 2012 Alzheimer’s Disease Facts and Figures Prevalence

ThedefinitionofAlzheimer’sdiseaseandother

dementiasusedintheFraminghamStudyrequired

documentationofmoderatetoseverediseaseas

wellassymptomslastingaminimumofsixmonths.

Usingadefinitionthatalsoincludesmilderdiseaseand

diseaseoflessthansixmonths’duration,lifetimerisks

ofAlzheimer’sdiseaseandotherdementiaswouldbe

muchhigherthanthoseestimatedbythisstudy.

Estimates of the Number of People with Alzheimer’s Disease, by State

Table2(pages20to21)summarizestheprojectedtotal

numberofpeopleage65andolderwithAlzheimer’s

diseasebystatefor2000,2010and2025.A10 The

percentagechangesinthenumberofpeoplewith

Alzheimer’sbetween2000and2010andbetween

2000and2025arealsoshown.Notethatthetotal

numberofpeoplewithAlzheimer’sislargerforstates

withlargerpopulations,suchasCaliforniaandNew

York.Comparableprojectionsforothertypesof

dementiaarenotavailable.

AsshowninFigure3,between2000and2025some

statesandregionsacrossthecountryareexpectedto

experiencedouble-digitpercentageincreasesinthe

overallnumbersofpeoplewithAlzheimer’sdueto

increasesintheproportionofthepopulationoverage

65.TheSouthandWestareexpectedtoexperience

50percentandgreaterincreasesinnumbersof

peoplewithAlzheimer’sbetween2000and2025.

Somestates(Alaska,Colorado,Idaho,Nevada,Utah

andWyoming)areprojectedtoexperienceadoubling

(ormore)ofthenumberofpeoplewithAlzheimer’s.

AlthoughtheprojectedincreasesintheNortheastare

notnearlyasmarkedasthoseinotherregionsofthe

UnitedStates,itshouldbenotedthatthisregionof

thecountrycurrentlyhasalargeproportionofpeople

withAlzheimer’srelativetootherregionsbecausethis

regionalreadyhasahighproportionofpeopleover

age65.Theincreasingnumberofpeoplewith

Alzheimer’swillhaveamarkedimpactonstates’health

caresystems,nottomentionfamiliesandcaregivers.

CreatedfromdatafromSeshadrietal. (78)

25

20

15

10

5

0

figure 2: Framingham Estimated Lifetime Risks for Alzheimer’s by Age and Sex

MenWomenPercentage

9.1%9.1%

17.2%17.2%

10.2%

18.5%

12.1%

20.3%

Age 65 75 85

Page 20: Alzheimer facts figures 2012

18 Prevalence 2012 Alzheimer’s Disease Facts and Figures

Looking to the Future

ThenumberofAmericanssurvivingintotheir80sand

90sandbeyondisexpectedtogrowdramaticallydue

toadvancesinmedicineandmedicaltechnology,as

wellassocialandenvironmentalconditions.(80)

Additionally,alargesegmentoftheAmerican

population—thebabyboomgeneration—isreaching

theageofgreaterriskforAlzheimer’sandother

0–24.0% 24.1%–31.0% 31.1%–49.0% 49.1%–81.0% 81.1%–127.0%

AK

AL

ARAZ

CA CO

CT

DC

DE

FL

GAHI

IA

ID

IL IN

KSKY

LA

MA

MD

ME

MI

MN

MO

MS

MT

NC

ND

NE

NH

NJ

NM

NV

NY

OH

OK

OR

PA

RI

SC

SD

TN

TX

UT

VA

VT

WA

WI

WV

WY

CreatedfromdatafromHebertetal.(79),A10

dementias.Infact,thefirstbabyboomersreachedage

65in2011.By2030,thesegmentoftheU.S.population

age65andolderisexpectedtodouble,andthe

estimated71millionolderAmericanswillmakeup

approximately20percentofthetotalpopulation.(81)

AsthenumberofolderAmericansgrowsrapidly,sotoo

willthenumbersofnewandexistingcasesof

Alzheimer’sdisease,asshowninFigure4.A11

figure 3: Projected Changes Between 2000 and 2025 in Alzheimer’s Prevalence by State

Page 21: Alzheimer facts figures 2012

19 2012 Alzheimer’s Disease Facts and Figures Prevalence

• In2000,therewereanestimated411,000newcases

ofAlzheimer’sdisease.For2010,thatnumberwas

estimatedtobe454,000(a10percentincrease);

by2030,itisprojectedtobe615,000(a50percent

increasefrom2000);andby2050,959,000(a130

percentincreasefrom2000).(76)

•By2025,thenumberofpeopleage65andolderwith

Alzheimer’sdiseaseisestimatedtoreach6.7million

—a30percentincreasefromthe5.2millionage65

andoldercurrentlyaffected.(47)

•By2050,thenumberofpeopleage65andolder

withAlzheimer’sdiseasemaytriple,from5.2million

toaprojected11millionto16million,barringthe

developmentofmedicalbreakthroughstoprevent,

sloworstopthedisease.(47),A11

Longerlifeexpectanciesandagingbabyboomers

willalsoincreasethenumbersandpercentagesof

Americanswhowillbeamongtheoldest-old.Between

2010and2050,theoldest-oldareexpectedtoincrease

from15percentofallolderpeopleintheUnitedStates

tooneineveryfourolderAmericans(24percent).(80) This

willresultinanadditional15millionoldest-oldpeople—

individualsathighriskfordevelopingAlzheimer’s.(80)

•By2050,thenumberofAmericansage85yearsand

olderwillnearlyquadrupleto21million.(80)

• In2012,the85-years-and-olderpopulationincludes

about2.5millionpeoplewithAlzheimer’sdisease,

or48percentoftheAlzheimer’spopulationage65

andolder.(47)

•Whenthefirstwaveofbabyboomersreachesage

85(in2031),anestimated3.5millionpeopleage85

andolderwillhaveAlzheimer’s.(47)

18

16

14

12

10

8

6

4

2

0

Year 2000 2010 2020 2030 2040 2050

Numbers (in millions)

figure 4: Projected Numbers of People Age 65 and Over in the U.S. Population with Alzheimer’s Disease Using the U.S. Census Bureau Estimates of Population Growth*

*Numbersindicatemiddleestimatesperdecade.Coloredareaindicateslowandhighestimatesperdecade.

CreatedfromdatafromHebertetal.(47),A11

4.5

5.7

13.2

5.1

7.7

11.0

Page 22: Alzheimer facts figures 2012

20 Prevalence 2012 Alzheimer’s Disease Facts and Figures

Percentage Change in Alzheimer’s (Compared with 2000)

Projected Total Numbers (in 1,000s)

with Alzheimer’s

table 2: Projections by State for Total Numbers of Americans Age 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

Page 23: Alzheimer facts figures 2012

21

CreatedfromdatafromHebertetal.(79),A10

Percentage Change in Alzheimer’s (Compared with 2000)

Projected Total Numbers (in 1,000s)

with Alzheimer’s

table 2 (continued)

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

2012 Alzheimer’s Disease Facts and Figures Prevalence

Page 24: Alzheimer facts figures 2012

mOrtAlity

Alzheimer’s diseAse is the sixth-leAding cAuse Of deAth in the united stAtes.

Alzheimer’s disease is the fifth-leading cause of death for those age 65 and older.(82)

5 6

Page 25: Alzheimer facts figures 2012

23 2012 Alzheimer’s Disease Facts and Figures Mortality

Basedon2008finaldatafromtheNationalCenter

forHealthStatistics,Alzheimer’swasreportedasthe

underlyingcauseofdeathfor82,435people.(82)

However,deathcertificatesforindividualswith

Alzheimer’softenlistacuteconditionsastheprimary

causeofdeathratherthanAlzheimer’s.(83-86) Thus,

Alzheimer’sdiseaseislikelyacontributingcauseof

deathforevenmoreAmericansthanindicatedby

officialgovernmentdata.

Deaths from Alzheimer’s Disease

Alzheimer’sisbecomingamorecommoncauseof

deathasthepopulationsoftheUnitedStatesand

othercountriesage.Whiledeathsfromothermajor

causescontinuetoexperiencesignificantdeclines,

thosefromAlzheimer’sdiseasehavecontinuedtorise.

Between2000and2008,deathsattributedto

Alzheimer’sdiseaseincreased66percent,whilethose

attributedtothenumberonecauseofdeath,heart

disease,decreased13percent(Figure5).(82, 87)

Theincreaseinthenumberandproportionofdeath

certificateslistingAlzheimer’sreflectsbothchangesin

patternsofreportingdeathsondeathcertificatesover

timeaswellasanincreaseintheactualnumberof

deathsattributabletoAlzheimer’s.

Thedifferentwaysinwhichdementiaeventuallyends

indeathcancreateambiguityabouttheunderlying

causeofdeath.Severedementiafrequentlycauses

suchcomplicationsasimmobility,swallowing

disordersandmalnutrition.Thesecomplicationscan

significantlyincreasetheriskofdeveloping

pneumonia,whichhasbeenfoundinseveralstudiesto

bethemostcommonlyidentifiedcauseofdeath

amongelderlypeoplewithAlzheimer’sdiseaseand

otherdementias.(88-89)Thesituationhasbeendescribed

asa“blurreddistinctionbetweendeathwith dementia

and death fromdementia.”(90)Regardlessofthecause

ofdeath,61percentofpeoplewithAlzheimer’satage

70areexpectedtodiebeforeage80comparedwith

30percentofpeopleatage70withoutAlzheimer’s.(91)

CreatedfromdatafromtheNationalCenterforHealthStatistics(87)andMiniñoetal.(82)

70

60

50

40

30

20

10

0

-10

-20

-30

Cause ofDeath

Percentage

figure 5: Percentage Changes in Selected Causes of Death (All Ages) Between 2000 and 2008

Alzheimer’s Stroke Prostate Breast Heart HIV disease cancer cancer disease

-3%

-20%

-8%-13%

-29%

+ 66%

Page 26: Alzheimer facts figures 2012

24 Mortality 2012 Alzheimer’s Disease Facts and Figures

Alabama 1,518 32.6

Alaska 80 11.7

Arizona 2,099 32.3

Arkansas 893 31.3

California 10,098 27.5

Colorado 1,353 27.4

Connecticut 839 24.0

Delaware 204 23.4

DistrictofColumbia 132 22.3

Florida 4,743 25.9

Georgia 1,929 19.9

Hawaii 218 16.9

Idaho 393 25.8

Illinois 3,192 24.7

Indiana 1,971 30.9

Iowa 1,332 44.4

Kansas 961 34.3

Kentucky 1,370 32.1

Louisiana 1,361 30.9

Maine 450 34.2

Maryland 1,016 18.0

Massachusetts 1,832 28.2

Michigan 2,739 27.4

Minnesota 1,344 25.7

Mississippi 916 31.2

Missouri 2,010 34.0

CreatedfromdatafromMiniñoetal.(82)

State Number of Deaths rate

table 3: Number of Deaths and Annual Mortality Rate (per 100,000) Due to Alzheimer’s Disease, by State, 2008

State Number of Deaths rate

Montana 294 30.4

Nebraska 610 34.2

Nevada 279 10.7

NewHampshire 393 29.9

NewJersey 1,857 21.4

NewMexico 366 18.4

NewYork 2,303 11.8

NorthCarolina 2,624 28.5

NorthDakota 312 48.6

Ohio 4,285 37.3

Oklahoma 1,061 29.1

Oregon 1,302 34.4

Pennsylvania 3,863 31.0

RhodeIsland 359 34.2

SouthCarolina 1,492 33.3

SouthDakota 402 50.0

Tennessee 2,423 39.0

Texas 5,280 21.7

Utah 409 14.9

Vermont 218 35.1

Virginia 1,763 22.7

Washington 3,105 47.4

WestVirginia 662 36.5

Wisconsin 1,655 29.4

Wyoming 125 23.5

u.S. Total 82,435 27.1

Page 27: Alzheimer facts figures 2012

25 2012 Alzheimer’s Disease Facts and Figures Mortality

*Reflectsaveragedeathrateforages45andolder.

CreatedfromdatafromMiniñoetal.(82)

AnotherwaytodescribetheimpactofAlzheimer’s

diseaseonmortalityisthroughastatisticknownas

populationattributablerisk.Itrepresentsthe

proportionofdeaths(inaspecifiedamountoftime)in

apopulationthatmaybepreventableifadiseasewere

eliminated.Thepopulationattributableriskof

Alzheimer’sdiseaseonmortalityoverfiveyearsin

peopleage65andolderisestimatedtobebetween

5percentand15percent.(92-93)Thismeansthat5to15

percentofalldeathsinolderpeoplecanbeattributed

toAlzheimer’sdisease.

State-by-State Deaths from Alzheimer’s Disease

Table3providesinformationonthenumberofdeaths

duetoAlzheimer’sbystatein2008.Theinformation

wasobtainedfromdeathcertificatesandreflectsthe

conditionidentifiedbythephysicianastheunderlying

causeofdeath,definedbytheWorldHealth

Organizationas“thediseaseorinjurywhichinitiated

thetrainofeventsleadingdirectlytodeath.”(82) The

tablealsoprovidesannualmortalityratesbystateto

comparetheriskofdeathduetoAlzheimer’sdisease

acrossstateswithvaryingpopulationsizes.Forthe

UnitedStatesasawhole,in2008,themortality

rateforAlzheimer’sdiseasewas27.1deathsper

100,000people.

Death Rates by Age

Althoughpeopleyoungerthan65candevelopanddie

fromAlzheimer’sdisease,thehighestriskofdeath

fromAlzheimer’sisinpeopleage65orolder.Asseen

inTable4,deathratesforAlzheimer’sincrease

dramaticallywithage.Toputtheseage-related

differencesintoperspective,intheUnitedStatesin

2008,thetotalmortalityratesfromallcausesofdeath

were2.5timesashighforthoseage75to84asfor

peopleage65to74and6.5timesashighforthose

age85andolderasforpeopleage65to74.For

diseasesoftheheart,mortalityrateswere2.8times

and9.3timesashigh,respectively.Forallcancers,

mortalityrateswere1.8timesashighand2.2timesas

high,respectively.Incontrast,Alzheimer’sdisease

deathrateswere9.0timesashighforpeopleage

75to84and42.3timesashighforpeople85and

oldercomparedwithpeopleage65to74.(82) This large

age-relatedincreaseindeathratesduetoAlzheimer’s

underscoresthelackofacureoreffectivetreatments

forthedisease.

Duration of Illness from Diagnosis to Death

Studiesindicatethatpeople65andoldersurvivean

averageoffourtoeightyearsafteradiagnosisof

Alzheimer’sdisease,yetsomeliveaslongas20years

withAlzheimer’s.(93-97)Thisindicatestheslow,insidious

natureoftheprogressionofAlzheimer’s.Onaverage,

apersonwithAlzheimer’swillspendmoreyears

(40percentofthetotalnumberofyearswith

Alzheimer’s)inthemostseverestageofthedisease

thaninanyotherstage.(91)Muchofthistimewillbe

spentinanursinghome,asnursinghomeadmission

byage80isexpectedfor75percentofpeoplewith

Alzheimer’scomparedwithonly4percentofthe

generalpopulation.(91)Inall,anestimatedtwo-thirds

ofthosedyingofdementiadosoinnursinghomes,

comparedwith20percentofcancerpatientsand

28percentofpeopledyingfromallotherconditions.(98)

Thus,inadditiontoAlzheimer’sbeingthesixth-leading

causeofdeath,thelongdurationofillnessmaybean

equallytellingstatisticofthepublichealthimpactof

Alzheimer’sdisease.

table 4: U.S. Alzheimer’s Death Rates (per 100,000) by Age, 2000, 2002, 2004, 2006 and 2008

Age 2000 2002 2004 2006 2008

45–54 0.2 0.1 0.2 0.2 0.2

55–64 2.0 1.9 1.9 2.1 2.2

65–74 18.7 19.7 19.7 20.2 21.5

75–84 139.6 158.1 168.7 175.6 193.3

85+ 667.7 752.3 818.8 848.3 910.1

rate* 17.6 20.4 22.5 24.2 27.1

Page 28: Alzheimer facts figures 2012

cAregiving

Over 15 milliOn AmericAns prOvide unpAid cAre fOr A persOn with Alzheimer’s Or Other dementiAs.

eighty percent of care provided at home is delivered by family caregivers.

80%

Page 29: Alzheimer facts figures 2012

27

Unpaid Caregivers

Over15millionAmericansprovideunpaidcarefora

personwithAlzheimer’sdiseaseorotherdementias.A12

Unpaidcaregiversareprimarilyfamilymembers,but

theyalsomaybeotherrelativesandfriends.In2011,

thesepeopleprovidedanestimated17.4billionhours

ofunpaidcare,acontributiontothenationvaluedat

over$210billion.

Eightypercentofcareprovidedathomeisdeliveredby

familycaregivers;fewerthan10percentofolderadults

receivealloftheircarefrompaidworkers.(99)Caringfor

apersonwithAlzheimer’sorotherdementiasisoften

verydifficult,andmanyfamilyandotherunpaid

caregiversexperiencehighlevelsofemotionalstress

anddepressionasaresult.Caregivingmayalsohavea

negativeimpactonhealth,employment,incomeand

familyfinances.A13However,avarietyofinterventions

havebeendevelopedthatmayhelpcaregiverswith

thechallengesofcaregiving(Table5,page35).

Who are the Caregivers?

InformationoncaregiversofpeoplewithAlzheimer’s

diseaseandotherdementiascomesfromnationally

representativesurveysthatvaryinhowdataare

collected.Onesourceisthe2009BehavioralRisk

FactorSurveillanceSystem(BRFSS)survey.(100) The

BRFSSsurveyisanannualpublichealthtelephone

surveyconductedbyeachstateandtheDistrictof

ColumbiaincoordinationwiththeU.S.Centersfor

DiseaseControlandPrevention.

The2009BRFSSsurveysconductedinIllinois,

Louisiana,OhioandtheDistrictofColumbiaincluded

additionalquestionsthatenableexaminationofthe

differencesbetweencaregiversofsomeonewith

Alzheimer’s disease or other dementias and other

caregivers.(101)Over6,800caregiversinthesestates

weresurveyed.Comparedwithcaregiversof

individualswithotherconditions,Alzheimer’sand

dementiacaregiversweremorelikelytobeolder

(52yearsversus46years),female(70.3percent

versus59.2percent),married(72.8percent

versus63.1percent)andwhite(81.0percentversus

68.6percent).

SurveysconductedfortheAlzheimer’sAssociationA13

andtheNationalAllianceonCaregiving(NAC)and

AARP(102)foundnodifferenceinmeanage,genderor

maritalstatusbetweencaregiversofpeoplewith

Alzheimer’sandotherdementiasandcaregiversof

peoplewithoutAlzheimer’sandotherdementias.

Thismayreflectvariationsinthesurveys’sampling

approach(forexample,ageandracedifferences

betweencaregiversandnon-caregiversintheBRFSS

mayhaveresultedfromdemographicdifferences

betweenstatesthatdidanddidnotincludethe

additionalcaregiverquestions),inclusioncriteria(the

NAC/AARPsurveyrequiredthecarerecipienttobeat

least50yearsold,whereastheBRFSShadnoage

requirement)orotherfactors.

2012 Alzheimer’s Disease Facts and Figures Caregiving

CreatedfromdatafromtheAlzheimer’sAssociation.A13

under 35: 10%

35–44: 11%

45–54: 23%

55–64: 33%

65–84: 21%

85 and older: 2%

• • • • • •

figure 6: Ages of Alzheimer’s and Other Dementia Caregivers, 2010

80%

Page 30: Alzheimer facts figures 2012

28

Thesurveysalsodeterminedotherdemographic

characteristicsofunpaidcaregiversofpeoplewith

Alzheimer’sdiseaseandotherdementias.Most

(56percent)were55orolder(Figure6,page27)and

hadlessthanacollegedegree(67percent).A13 They

tendedtobetheprimarybreadwinnersoftheir

household(55percent),andnearlyhalfwereemployed

fullorparttime(44percent).A13Halfofthese

caregiverslivedinthesamehouseholdastheperson

forwhomtheyprovidedcare.Thirtypercenthad

childrenunder18yearsoldlivingwiththem;such

caregiversaresometimescalledthe“sandwich

generation”becausetheysimultaneouslyprovidecare

fortwogenerations.(102)Almosthalfofcaregiverstake

careofparents.(102),A13Between6percent(102) and

17percentA13takecareofaspouse.

Ninepercentofunpaidcaregiversofpeoplewith

Alzheimer’sandotherdementiaslivemorethantwo

hoursfromthepersonforwhomtheyprovidecare,

andanother6percentliveonetotwohoursaway.(102)

Dependingonthedefinitionof“long-distance

caregiving,”thesenumbersindicatethat1.4millionto

2.3millioncaregiversofpeoplewithAlzheimer’sand

otherdementiasarelong-distancecaregivers.

Care Provided by ethnic Communities

Informationabouttheethnicdistributionofcaregivers

ofpeoplewithAlzheimer’sdiseaseandother

dementiasvariesbysurvey.Theproportionof

caregiverswhoarenon-Hispanicwhitesrangedfrom

70percentA13to81percent.(101-102)Non-Hispanic

African-Americanscomprisedbetween8percent(102)

and15percentA13ofcaregivers.Hispanicsmadeup

from1percent(101)to12percentofcaregivers,A13 and

Asian-Americansandotherethnicgroupsmadeup

1to2percentofcaregiversinseveralsurveys.A13,(102)

Thesesurveyscontainedrelativelysmallnumbersof

non-whitecaregivers,makingitdifficulttocompare

characteristicsofcaregiversacrossracialorethnic

groups.However,comparedwithothersurveys,the

samplingofminoritiesintheNAC/AARPsurvey

providedmorestableestimatesofminoritycaregivers

andallowedmorestablecomparisonsacrossdifferent

racialandethnicgroups.

AmongcaregiversofapersonwithAlzheimer’s

diseaseorotherdementias,specifically,notable

differencesfromtheNAC/AARPsurveyinclude

thefollowing:(102)

•Non-Hispanicwhitesaremorelikelythancaregivers

ofotherracial/ethnicgroupstocareforaparent

(54percentversus38percent).

•Non-HispanicwhiteandAsian-Americancaregivers

aremorelikelytocareforamarriedperson

(30percentand48percent,respectively)compared

withnon-HispanicAfrican-Americancaregivers

(11percent).

•Hispanicandnon-HispanicAfrican-American

caregiversspendmoretimecaregiving

(approximately30hoursperweek)than

non-Hispanicwhitecaregivers(19.8hoursperweek)

andAsian-Americancaregivers(15.8hoursperweek).

•Hispanicandnon-HispanicAfrican-American

caregiversaremorelikelytoexperiencehighburden

fromcaregiving(45percentand57percent,

respectively),whereasonlyone-thirdofnon-

HispanicwhitesandAsian-Americansreport

highburden.

Caregiving Tasks

Thetypeofhelpprovidedbyfamilyandotherunpaid

caregiversdependsontheneedsofthepersonwith

Alzheimer’sorotherdementiasandthestageof

disease.Caregivingtaskscaninclude:

• Instrumentalactivitiesofdailyliving(IADLs):

•Shoppingforgroceries,preparingmealsand

providingtransportation.

Caregiving 2012 Alzheimer’s Disease Facts and Figures

Page 31: Alzheimer facts figures 2012

29

•Helpingthepersontakemedicationscorrectlyand

followtreatmentrecommendationsfordementia

andothermedicalconditions.

•Managingfinancesandlegalaffairs.

•Personalactivitiesofdailyliving(ADLs):

•Bathing,dressing,grooming,feedingandhelping

thepersonusethetoiletormanageincontinence.

•Managingsafetyissuesandbehavioralsymptomsof

the disease:

•Assistingwithmobilityneedsandtransferringfrom

bedtochair.

•Supervisingthepersontoavoidunsafeactivities

suchaswanderingandgettinglost.

• Findingandusingsupportiveservices:

•Makingarrangementsformedicalcareandpaid

in-home,assistedlivingornursinghomecare.

•Hiringandsupervisingotherswhoprovidecare.

•Performinghouseholdchores.

•Generaladditionalresponsibilitiesthatarenot

necessarilyspecifictasks:

•Overallmanagementofgettingthroughtheday.

•Generalfamilyissuesrelatedtocaringforarelative

withAlzheimer’sdisease,includingcommunication

withotherfamilymembersaboutcareplans,decision-

makingandarrangementsforrespiteforthe

maincaregiver.

2012 Alzheimer’s Disease Facts and Figures Caregiving

figure 7: Proportion of Caregivers of People with Alzheimer’s and Other Dementias vs. Caregivers of Other Older People Who Provide Help with Specific Activities of Daily Living, United States, 2009

CaregiversofpeoplewithAlzheimer’sandotherdementiasCaregiversofotherolderpeoplePercentage

Gettinginand Dressing Gettingtoand Bathing Managing Feeding outofbed fromthetoilet incontinenceanddiapers

60

50

40

30

20

10

0

CreatedfromdatafromtheNationalAllianceforCaregivingandAARP.(102)

54%

42%40%

31% 32%

26%

31%

23%

31%

16%

31%

14%

Activity

Page 32: Alzheimer facts figures 2012

30

Familyandotherunpaidcaregiversofpeoplewith

Alzheimer’sandotherdementiasaremorelikelythan

caregiversofotherolderpeopletoassistwithanygiven

ADL.Overhalfofthecaregiversofpeople

withAlzheimer’sandotherdementiasreport

providinghelpwithgettinginandoutofbed.About

one-thirdalsoprovidehelpwithgettingtoandfromthe

toilet,bathing,managingincontinenceand

feeding(Figure7,page29).Fewercaregiversofother

olderpeoplereportprovidinghelpwitheachofthese

typesofcare.(102)

InadditiontoassistingwithADLs,almosttwo-thirdsof

caregiversofpeoplewithAlzheimer’sandotherdementias

advocatefortheircarerecipientwithgovernmentagencies

andserviceproviders(64percent),andnearlyhalfarrange

andsupervisepaidcaregiversfromoutsidecommunity

agencies(46percent).Bycontrast,caregiversofother

olderadultsarelesslikelytoadvocatefortheirfamily

member(50percent)andsupervisecommunity-based

care(33percent).(102)

Caregiving 2012 Alzheimer’s Disease Facts and Figures

CaregiversofpeoplewithAlzheimer’sandotherdementiasCaregiversofotherolderpeople

50

45

40

35

30

25

20

15

10

5

0

Percentage

32%

28%

43%

33%

23%

34%

4%2%

figure 8: Proportion of Alzheimer’s and Dementia Caregivers vs. Caregivers of Other Older People by Duration of Caregiving, United States, 2009

CreatedfromdatafromtheNationalAllianceforCaregivingandAARP.(102)

Duration Occasionally Lessthan1year 1–4years 5+years

Page 33: Alzheimer facts figures 2012

31

WhenapersonwithAlzheimer’sorotherdementias

movestoanassistedlivingresidenceornursinghome,

thehelpprovidedbyhisorherfamilycaregiverusually

changes.Yetmanycaregiverscontinuetoassistwith

financialandlegalaffairs,makearrangementsfor

medicalcareandprovideemotionalsupport.Some

alsocontinuetohelpwithbathing,dressingand

otherADLs.(104-106)

Duration of Caregiving

CaregiversofpeoplewithAlzheimer’sandother

dementiasprovidecareforalongertime,onaverage,

thancaregiversofolderadultswithotherconditions.

Forexample,amongcaregiversofpeoplewith

Alzheimer’sdisease,23percenthadbeencaregivers

forlessthanoneyear,43percentforonetofouryears,

and32percentforfiveyearsormore.Incontrast,

moreoftheirnon-Alzheimer’sdiseasecaregiver

counterpartshadbeencaregivingforlessthanone

year(34percent),andfewerofthemhadbeen

caregivingforonetofouryears(33percent)orlonger

(28percent)(Figure8).(102)

Hours of unpaid Care and economic Value of Caregiving

In2011,the15.2millionfamilyandotherunpaid

caregiversofpeoplewithAlzheimer’sdiseaseand

otherdementiasprovidedanestimated17.4billion

hoursofunpaidcare.Thisnumberrepresentsan

averageof21.9hoursofcarepercaregiverperweek,

or1,139hoursofcarepercaregiverperyear.A14With

thiscarevaluedat$12.12perhour,A15 the estimated

economicvalueofthecareprovidedbyfamilyand

otherunpaidcaregiversofpeoplewithAlzheimer’s

diseaseandotherdementiaswas$210.5billionin

2011.Table6(pages36to37)showsthetotalhoursof

unpaidcareaswellasthevalueofthecareprovided

byfamilyandotherunpaidcaregiversfortheUnited

Statesandeachstate.

UnpaidcaregiversofpeoplewithAlzheimer’sdisease

andotherdementiasprovidedcarevaluedatmorethan

$1billionineachof39states.Unpaidcaregiversineach

ofthefourmostpopulousstates—California,Florida,

NewYorkandTexas—providedcarevaluedatmore

than$13billion.

Theaveragehoursperweekofunpaidcareprovidedfor

peoplewithAlzheimer’sandotherdementiasisgreater

ifthecaregiverliveswiththecarerecipient,ifthecare

recipienthascoexistingmedicalconditionsandashisor

herdiseaseprogresses.(102,107-109)

2012 Alzheimer’s Disease Facts and Figures Caregiving

figure 9: Proportion of Alzheimer’s and Dementia Caregivers Who Report High or Very High Emotional and Physical Stress Due to Caregiving

HightoveryhighNothightosomewhathighPercentage

80

60

40

20

0

61%

39%43%

57%

CreatedfromdatafromtheAlzheimer’sAssociation.A13

Emotionalstressofcaregiving

Physicalstressofcaregiving

Stress

Page 34: Alzheimer facts figures 2012

32

Impact of Caregiving

CaringforapersonwithAlzheimer’sorotherdementias

posesspecialchallenges.Althoughmemorylossisthe

best-knownsymptom,thesediseasesalsocauseloss

ofjudgment,orientationandtheabilitytounderstand

andcommunicateeffectively.Personalityandbehavior

areaffectedaswell.Individualsrequireincreasinglevels

ofsupervisionandpersonalcare,andmanycaregivers

experiencehighlevelsofstressandnegativeeffectson

theirhealth,employment,incomeandfinancialsecurity.

Thecloserelationshipbetweenthecaregiverandthe

impairedperson—arelationshipinvolvingshared

emotions,experiencesandmemories—may

particularlyplacecaregiversatriskforpsychological

andphysicalillness.(110)

Caregiver Emotional Well-Being

Althoughcaregiversreportpositivefeelingsabout

caregiving,includingfamilytogethernessandthe

satisfactionofhelpingothers,A13theyalsoreporthigh

levelsofstressoverthecourseofprovidingcare,suchas:

•Sixty-onepercentoffamilycaregiversofpeople

withAlzheimer’sandotherdementiasratedthe

emotionalstressofcaregivingashighorveryhigh

(Figure9,page31).A13Inaddition,about33percentof

familycaregiversofpeoplewithAlzheimer’sandother

dementiasreportsymptomsofdepression.(111-112)

FamilycaregiversofpeoplewithAlzheimer’sandother

dementiasreported“agoodamount”to“agreatdeal”

ofcaregivingstrainconcerningfinancialissues

(56percent)andfamilyrelationships(53percent).A13

•TheBRFSScaregiversurveyadministeredinthree

statesandtheDistrictofColumbiafoundthat36.5

percentofAlzheimer’sanddementiacaregiversrated

stressasthegreatestdifficultytheyfaced,compared

with23.6percentofnon-Alzheimer’sanddementia

caregivers.(101)

Caregiving 2012 Alzheimer’s Disease Facts and Figures

Had to go in late/leaveearly/taketimeoff

Effect

100

80

60

40

20

0

Percentage

CreatedfromdatafromtheAlzheimer’sAssociation.A13

65%

figure 10: Effect of Caregiving on Work: Caregiver Work-Related Changes

20%13% 11% 11% 10% 8%9% 9%

Hadtotakea leaveofabsence

Hadtogofromworkingfullto parttime

Hadtotakealess demandingjob

Had to turn downa promotion

Lostjob benefits

Hadtogiveupworkingentirely

Chose early retirement

Sawwork performancesuffertopointofpossible

dismissal

Page 35: Alzheimer facts figures 2012

33

•TheNAC/AARPsurveyfoundthat40percentof

caregiversreportedhighemotionalstress.This

surveyfoundthatcaregiverswhoreportedhigh

emotionalstresstendedtobethosewhowere

women,theprimarycaregiver,livingwiththecare

recipientandfeelingthattheyhadnochoiceintaking

ontheroleofcaregiver.(102)

•Caregiverswhoreportbeingstressedbecauseof

theimpairedperson’sbehavioralsymptomsare

morelikelytoplacetheircarerecipientinanursing

home.(111-112)However,evenaftercaregiversplace

theirfamilymemberinanursinghome,many

stillreporthighlevelsofemotionalandphysical

stress.(102,104,106)Seventy-sevenpercentoffamily

caregiversofpeoplewithAlzheimer’sdiseaseand

otherdementiassaidthattheysomewhatagreeto

stronglyagreethatthereisnorightorwrongwhen

familiesdecidetoplacetheirfamilymemberina

nursinghome.A13

•Caremayintensifyaspeoplewithdementianearthe

endoflife.Intheyearbeforetheperson’sdeath,

59percentofcaregiversfelttheywere“onduty”

24hoursaday,andmanyfeltthatcaregivingduring

thistimewasextremelystressful.Atotalof72

percentoffamilycaregiverssaidtheyexperienced

reliefwhenthepersondied.(109,113-114)

Caregiver Physical Health

Caregiversmaybecomepotential“secondary

patients”becauseofthenegativeimpactthat

providingcaremayhaveontheirgeneralhealthand

riskforchronicdisease,health-relatedphysiological

changes,healthcareutilizationandevendeath.(115)

Forty-threepercentofcaregiversofpeoplewith

Alzheimer’sdiseaseorotherdementiasreportedthat

thephysicalstressofcaregivingwashightoveryhigh

(Figure9).A13Thephysicalandemotionalimpactof

dementiacaregivingisestimatedtoresultin$8.7

billioninincreasedhealthcarecostsintheUnited

States.A16Table6(pages36to37)showsthe

estimatedhigherhealthcarecostsforAlzheimer’s

anddementiacaregiversineachstate.

General Health and Risk for Chronic Disease

CaregiversofpeoplewithAlzheimer’sandother

dementiassaidtheywere“somewhat”to“very

concerned”aboutmaintainingtheirownhealthsince

becomingacaregiver(75percent).A13 Dementia

caregiversweremorelikelythannon-caregiverstoreport

thattheirhealthwasfairorpoor,(115)andtheyweremore

likelythancaregiversofotherolderpeopletosaythat

caregivingmadetheirhealthworse.(102-103)

DatafromtheBRFSScaregiversurveyfoundthat

Alzheimer’sanddementiacaregiversweremorethan

twiceaslikelyasnon-Alzheimer’scaregiverstosaythe

greatest difficultyofcaregivingisthatitcreatesor

exacerbatestheirownhealthproblems.(101)

CaregiversofpeoplewithAlzheimer’sandother

dementiasmayalsohavedifficultymaintaininghealthy

behaviors,asonly3percentreportedusingexercise

asawayofgettingrelieffromtheircaregiving

responsibilities.(116)However,otherstudiessuggest

thatcaregivingtaskskeepoldercaregiversmore

physicallyactivethannon-caregivers.(117)

Researchsuggeststhatthechronicstressofcaregiving

mayleadtoconditionssuchasmetabolicsyndrome(a

combinationofabdominalobesity,highbloodpressure,

highbloodglucoseandhighcholesterolthatisoften

associatedwithdevelopingdiabetesandheartdisease).

Metabolicsyndrome,inturn,mayhavedetrimental

effectsonhealth.(118)

Physiological Changes

CaregiversofaspousewithAlzheimer’sorother

dementiasarealsomorelikelythanmarried

non-caregiverstohavephysiologicalchangesthat

mayreflectdecliningphysicalhealth,includinghigh

levelsofstresshormones,(119) reduced immune

function,(120-121)slowwoundhealing(122) and increased

incidenceofhypertension,(123) coronary heart disease(124)

andimpairedendothelialfunction,allofwhichmaybe

associatedwithincreasedriskofcardiovasculardisease.(125)

2012 Alzheimer’s Disease Facts and Figures Caregiving

Page 36: Alzheimer facts figures 2012

34

Health Care Utilization

Inonestudy,caregiversofpeoplewithdementiawere

morelikelytohaveanemergencydepartmentvisitor

hospitalizationintheprevioussixmonthsiftheywere

depressedorweretakingcareofindividualswho

neededmorehelpwithADLsandhadmorebehavioral

symptoms.(126)

Mortality

Thehealthofapersonwithdementiamayalsoaffect

thecaregiver’smortality.Inonestudy,caregiversofa

spousewhowashospitalizedandhadamedicalrecord

ofdementiaweremorelikelytodieinthefollowing

yearthancaregiverswhosespousewashospitalized

butdidnothavedementia,evenafteraccountingfor

theageofthecaregiver.(127)However,otherresearch

hasfoundthatthislinkdoesnotalwaysholdbetween

providingcareforapersonwithdementiaand

mortality.Somestudieshavefoundthatcaregivers

havelowermortalityratesthannon-caregivers.(128-129)

Onestudyfoundthathigherstresslevelswere

associatedwithhigherratesofmortalityinboth

caregiversandnon-caregivers.(129)Thesefindings

suggestthatitishighstress,notcaregivingperse,

thatincreasestheriskofmortality.Suchresults

underscoretheimportanceofdocumentingwhich

aspectsofcaregivingmayhaveadversehealtheffects

onthecaregiver,developingprogramstohelpreduce

adversehealtheffectsrelatedtocaregivingand

conductingadditionalresearchtobetterunderstand

thesubtletiesoftheconnectionbetweencaregiving

andmortality.

Caregiver Employment

Although44percentofcaregiversreportedbeing

employedfullorparttime,manycaregiversofpeople

withAlzheimer’sandotherdementiasreportedmaking

majorchangestotheirworkschedulesbecauseof

theircaregivingresponsibilities:65percentsaidthey

hadtogoinlate,leaveearlyortaketimeoff,and

20percenthadtotakealeaveofabsence.Other

work-relatedchangespertainingtocaregivingare

summarizedinFigure10(page32).A13

Interventions that May Improve Caregiver Outcomes

Avarietyofinterventionshavebeentestedwithfamily

caregiversofpeoplewithAlzheimer’sdiseaseand

otherdementias.Thetypesandfocusofthese

interventionsaresummarizedinTable5.(130) These

interventionsinvolveavarietyofapproaches,including

individualand/orgroupeducationalandsupport

sessions,home-basedvisitsandtechnology-based

interventionsinvolvingtelephonecalls,theInternet,

videooraudiotapes,computersandinteractive

television.(131)

Overall,familycaregiversgivetheseinterventions

positiveevaluationsand,dependingonhowthe

interventionsaredelivered,theyhavebeeneffectivein

improvingoutcomessuchasincreasingcaregiver

knowledge,skillandwell-being;decreasingcaregiver

burdenanddepressivesymptoms;(130-135) and delaying

timetonursinghomeplacement,whichcouldreduce

overallhealthcarecosts.(136-137)

Paid Caregivers

PaidcaregiversofpeoplewithAlzheimer’sdiseaseor

otherdementiasincludedirect-careworkersand

professionals.Direct-careworkers,suchasnurse

aides,homehealthaidesandpersonal-andhome-care

aides,comprisethemajorityoftheformalhealthcare

deliverysystemforolderadults.Professionalswho

mayreceivespecialtrainingincaringforolderadults

includephysicians,physicianassistants,nurses,social

workers,pharmacists,caseworkersandothers.(99)

Direct-careworkers’rolesincludeassistancewith

bathing,dressing,housekeepingandfoodpreparation.

Theirjobsmayberewardinganddirectlyinfluencethe

Caregiving 2012 Alzheimer’s Disease Facts and Figures

Page 37: Alzheimer facts figures 2012

35 2012 Alzheimer’s Disease Facts and Figures Caregiving

table 5: Types and Focus of Caregiver Interventions

Type of Intervention Description

Includesastructuredprogramthatprovidesinformationaboutthedisease,resources

andservicesandabouthowtoexpandskillstoeffectivelyrespondtosymptomsof

thedisease(i.e.,cognitiveimpairment,behavioralsymptomsandcare-relatedneeds).

Includeslectures,discussionsandwrittenmaterialsandisledbyprofessionalswith

specializedtraining.

Focusesonbuildingsupportamongparticipantsandcreatingasettinginwhichtodiscuss

problems,successesandfeelingsregardingcaregiving.Groupmembersrecognizethat

othershavesimilarconcerns.Interventionsprovideopportunitiestoexchangeideasand

strategiesthataremosteffective.Thesegroupsmaybeprofessionallyorpeer-led.

Involvesarelationshipbetweenthecaregiverandatrainedtherapyprofessional.Therapists

mayteachsuchskillsasself-monitoring;challengenegativethoughtsandassumptions;help

developproblem-solvingabilities;andfocusontimemanagement,overload,managementof

emotionsandre-engagementinpleasantactivitiesandpositiveexperiences.

Includesvariouscombinationsofinterventionssuchaspsychoeducational,supportive,

psychotherapyandtechnologicalapproaches.Theseinterventionsareledbyskilled

professionals.

Psychoeducational

Supportive

Psychotherapy

Multicomponent

CreatedfromdatafromSörensenetal.(130)

qualityofcareprovided.However,theirworkis

difficult,andtheytypicallyarepoorlypaidandreceive

littleornotrainingtoassumetheseresponsibilities.

Turnoverratesarehigh,andrecruitmentandretention

arepersistentchallenges.(99)

ItisprojectedthattheUnitedStateswillneedan

additional3.5millionhealthcareprovidersby2030

justtomaintainthecurrentratioofhealthcareworkers

tothepopulation.(99)Theneedforhealthcare

professionalstrainedingeriatricsisescalating,butfew

providerschoosethiscareerpath.In2007,thenumber

ofphysicianscertifiedingeriatricmedicinetotaled

7,128;thosecertifiedingeriatricpsychiatryequaled

1,596.By2030,anestimated36,000geriatricianswill

beneeded.Somehaveestimatedthattheincrease

fromcurrentlevelswillamounttolessthan10percent,

whileothersbelievetherewillbeanetlossof

physiciansforgeriatricpatients.(99)

Otherprofessionsalsohavelownumbersofgeriatric

specialists:4percentofsocialworkersandlessthan

1percentofregisterednurses,physicianassistants

andpharmacistsidentifythemselvesasspecializing

ingeriatrics.(99)

Page 38: Alzheimer facts figures 2012

36 Caregiving 2012 Alzheimer’s Disease Facts and Figures

Number of Alzheimer’s/ Hours of Value of Higher Health Care State Dementia Caregivers unpaid Care unpaid Care Costs of CaregiversA16

Alabama 295,297 336,284,751 $4,075,771,180 $153,367,534

Alaska 32,089 36,542,585 $442,896,129 $24,403,258

Arizona 298,050 339,418,784 $4,113,755,662 $134,883,210

Arkansas 171,429 195,223,100 $2,366,103,974 $87,632,733

California 1,507,396 1,716,623,053 $20,805,471,403 $785,082,435

Colorado 227,372 258,931,710 $3,138,252,321 $113,600,337

Connecticut 174,032 198,187,153 $2,402,028,291 $125,378,858

Delaware 50,226 57,197,814 $693,237,500 $35,363,057

DistrictofColumbia 25,725 29,296,062 $355,068,269 $22,247,375

Florida 998,684 1,137,301,634 $13,784,095,810 $594,293,482

Georgia 487,575 555,250,899 $6,729,640,892 $221,645,679

Hawaii 62,607 71,296,910 $864,118,545 $35,778,255

Idaho 75,196 85,633,757 $1,037,881,136 $35,394,289

Illinois 581,773 662,523,319 $8,029,782,630 $327,515,576

Indiana 326,151 371,420,588 $4,501,617,522 $180,794,933

Iowa 134,338 152,984,086 $1,854,167,121 $77,522,771

Kansas 148,508 169,121,337 $2,049,750,604 $83,682,912

Kentucky 264,658 301,392,092 $3,652,872,155 $144,611,313

Louisiana 224,682 255,867,406 $3,101,112,962 $127,007,591

Maine 67,456 76,819,336 $931,050,350 $47,836,204

Maryland 278,490 317,144,389 $3,843,789,991 $173,722,031

Massachusetts 320,694 365,206,782 $4,426,306,199 $247,757,832

Michigan 504,550 574,581,267 $6,963,924,952 $277,650,941

Minnesota 241,112 274,577,911 $3,327,884,287 $148,867,694

Mississippi 202,193 230,257,949 $2,790,726,338 $109,676,152

table 6: Number of Alzheimer’s and Dementia Caregivers, Hours of Unpaid Care, Economic Value

of the Care and Higher Health Care Costs of Caregivers, by State, 2011*

Page 39: Alzheimer facts figures 2012

37 2012 Alzheimer’s Disease Facts and Figures Caregiving

table 6 (continued)

Number of Alzheimer’s/ Hours of Value of Higher Health Care State Dementia Caregivers unpaid Care unpaid Care Costs of CaregiversA16

Missouri 307,276 349,926,190 $4,241,105,423 $177,995,547

Montana 46,799 53,294,667 $645,931,370 $25,887,532

Nebraska 79,802 90,878,844 $1,101,451,591 $46,893,077

Nevada 132,264 150,622,367 $1,825,543,083 $63,117,580

NewHampshire 63,975 72,854,161 $882,992,429 $41,762,194

NewJersey 435,305 495,725,694 $6,008,195,408 $274,669,182

NewMexico 104,833 119,383,774 $1,446,931,343 $57,967,569

NewYork 994,540 1,132,582,680 $13,726,902,077 $689,993,768

NorthCarolina 431,075 490,908,515 $5,949,811,204 $231,544,112

NorthDakota 27,843 31,707,465 $384,294,471 $18,017,922

Ohio 586,878 668,336,953 $8,100,243,871 $345,333,151

Oklahoma 212,324 241,794,288 $2,930,546,775 $115,051,676

Oregon 165,806 188,819,908 $2,288,497,287 $91,032,239

Pennsylvania 664,384 756,600,213 $9,169,994,588 $427,038,350

RhodeIsland 52,983 60,337,603 $731,291,751 $36,638,055

SouthCarolina 283,504 322,853,918 $3,912,989,492 $148,509,055

SouthDakota 35,840 40,814,420 $494,670,767 $21,083,963

Tennessee 409,890 466,782,927 $5,657,409,070 $217,397,364

Texas 1,269,928 1,446,194,202 $17,527,873,731 $625,305,707

Utah 134,461 153,123,618 $1,855,858,249 $56,200,875

Vermont 29,534 33,633,747 $407,641,008 $18,792,895

Virginia 436,639 497,245,036 $6,026,609,835 $227,993,981

Washington 319,305 363,625,008 $4,407,135,094 $180,377,398

WestVirginia 108,205 123,223,331 $1,493,466,770 $68,836,860

Wisconsin 188,140 214,254,380 $2,596,763,084 $113,966,816

Wyoming 26,920 30,656,898 $371,561,603 $15,779,781

u.S. Totals 15,248,740 17,365,265,478 $210,467,017,597 $8,652,903,101

*DifferencesbetweenU.S.totalsandsummingthestatenumbersaretheresultofrounding. Createdfromdatafromthe2009BRFSS,U.S.CensusBureau,CentersforMedicareandMedicaidServices,NationalAllianceforCaregiving,AARPand U.S.DepartmentofLabor.A12,A14,A15,A16

Page 40: Alzheimer facts figures 2012

use And cOsts Of heAlth cAre, lOng-term cAre And hOspice

pAyments fOr cAre fOr 2012 Are estimAted tO be $200 billiOn.

As the number of people with Alzheimer’s disease and other dementias grows, aggregate payments for their care will increase dramatically.

Page 41: Alzheimer facts figures 2012

39

Aggregatepaymentsforhealthcare,long-termcare

andhospiceforpeoplewithAlzheimer’sdiseaseand

otherdementiasareprojectedtoincreasefrom

$200billionin2012to$1.1trillionin2050(in2012

dollars).A17 MedicareandMedicaidcoverabout70

percentofthecostsofcare.Allcostsarereportedin

2011 dollars,A18unlessotherwiseindicated.

Total Payments for Health Care, Long-Term Care and Hospice

Table7reportstheaverageperpersonpaymentsfor

healthcareandlong-termcareservicesforMedicare

beneficiarieswithAlzheimer’sdiseaseandother

dementias.In2008,totalperpersonpaymentsfrom

allsourcesforhealthcareandlong-termcarefor

MedicarebeneficiarieswithAlzheimer’sandother

dementiaswerethreetimesasgreataspaymentsfor

otherMedicarebeneficiariesinthesameagegroup

($43,847perpersonforthosewithAlzheimer’sand

otherdementiascomparedwith$13,879perpersonfor

thosewithoutAlzheimer’sandotherdementias).(138),A19

Twenty-ninepercentofolderindividualswith

Alzheimer’sdiseaseandotherdementiaswhohave

MedicarealsohaveMedicaidcoverage,comparedwith

11percentofindividualswithoutdementia.(138)Medicaid

paysfornursinghomeandotherlong-termcare

servicesforsomepeoplewithverylowincomeandlow

assets,andthehighuseoftheseservicesbypeople

withAlzheimer’sandotherdementiastranslatesinto

highcostsfortheMedicaidprogram.In2008,average

MedicaidpaymentsperpersonforMedicare

beneficiariesage65andolderwithAlzheimer’sand

otherdementiaswere19timesasgreatasaverage

MedicaidpaymentsforMedicarebeneficiarieswithout

Alzheimer’sandotherdementias($10,120perperson

forindividualswithAlzheimer’sandotherdementias

comparedwith$527forindividualswithoutAlzheimer’s

andotherdementias;Table7).(138)

Disease and Overall Community-Dwelling residential Facility Other Dementias

Beneficiaries with Alzheimer’s Disease Beneficiaries and Other Dementias by Place of Residence without Alzheimer’s

Medicare $19,820 $17,651 $22,849 $7,521

Medicaid 10,120 222 23,953 527

Uncompensated 273 392 107 308

HMO 994 1,543 227 1,450

Privateinsurance 2,262 2,485 1,948 1,521

Otherpayer 906 164 1,942 143

Out-of-pocket 9,368 3,167 18,035 2,284

Total* $43,847 $25,804 $69,066 $13,879

table 7: Average Annual Per-Person Payments for Health Care and Long-Term Care Services, Medicare Beneficiaries Age 65 and Older, with and without Alzheimer’s Disease and Other Dementias and By Place of Residence, 2008 Medicare Current Beneficiary Survey, 2011 Dollars

*Paymentsfromsourcesdonotequaltotalpaymentsexactlyduetotheeffectofpopulationweighting.PaymentsforallbeneficiarieswithAlzheimer’sdiseaseandotherdementiasincludepaymentsforcommunity-dwellingandfacility-dwellingbeneficiaries.

CreatedfromunpublisheddatafromtheMedicareCurrentBeneficiarySurveyfor2008.(138)

2012 Alzheimer’s Disease Facts and Figures use and Costs of Health Care, Long-Term Care and Hospice

Payment Source

Page 42: Alzheimer facts figures 2012

40

Totalpaymentsfor2012areestimatedat$200billion,

including$140billionforMedicareandMedicaid

combinedin2012dollars(Figure11).Thesefiguresare

derivedfromamodeldevelopedbyTheLewinGroup

usingdatafromtheMedicareCurrentBeneficiary

SurveyandTheLewinGroup’sLong-TermCare

FinancingModel.A17

Use and Costs of Health Care Services

PeoplewithAlzheimer’sdiseaseandotherdementias

havemorethanthreetimesasmanyhospitalstaysas

otherolderpeople.(138)Moreover,theuseofhealthcare

servicesforpeoplewithotherseriousmedical

conditionsisstronglyaffectedbythepresence

orabsenceofAlzheimer’sandotherdementias.

Inparticular,peoplewithcoronaryheartdisease,

diabetes,chronickidneydisease,chronicobstructive

use and Costs of Health Care, Long-Term Care and Hospice 2012 Alzheimer’s Disease Facts and Figures

Total cost: $200 Billion (B)

*Dataarein2012dollars.

CreatedfromdatafromtheapplicationofTheLewinModelA17todatafromtheMedicareCurrentBeneficiarySurveyfor2008.(138)“Other”paymentsourcesincludeprivateinsurance,healthmaintenanceorganizations,othermanagedcareorganizationsanduncompensatedcare.

Medicare $104.5 B, 52%

Medicaid $35.5 B, 18%

Out-of-pocket $33.8 B, 17%

Other $26.2 B, 13%

figure11: Aggregate Costs of Care by Payer for Americans Age 65 and Older with Alzheimer‘s Disease and Other Dementias, 2012*

9%

6% 5%

*AllhospitalizationsforindividualswithaclinicaldiagnosisofprobableorpossibleAlzheimer’sdisease wereusedtocalculatepercentages.Theremaining37percentofhospitalizationswereduetootherreasons.

CreatedfromdatafromRudolphetal.(139)

30

25

20

15

10

5

0

Syncope,fall, Ischemicheart Gastrointestinal Pneumonia Delirium,mental trauma disease disease status change

26%

17%

Reasonsfor Hospitalization

Percentage

figure12: Reasons for Hospitalization of People with Alzheimer’s Disease: Percentage of Hospitalized People by Admitting Diagnosis*

• • • •

Page 43: Alzheimer facts figures 2012

41

pulmonarydisease,strokeorcancerwhoalsohave

Alzheimer’sandotherdementiashavehigheruseand

costsofhealthcareservicesthandopeoplewith

thesemedicalconditionsbutnocoexistingAlzheimer’s

andotherdementias.

use of Health Care Services

OlderpeoplewithAlzheimer’sdiseaseandother

dementiashavemorehospitalstays,skillednursing

facilitystaysandhomehealthcarevisitsthanother

olderpeople.

•Hospital.In2008,therewere780hospitalstaysper

1,000Medicarebeneficiariesage65andolderwith

Alzheimer’sdiseaseorotherdementiascompared

with234hospitalstaysper1,000Medicare

beneficiarieswithouttheseconditions.(138) The most

commonreasonsforhospitalizationofpeoplewith

Alzheimer’sdiseaseincludesyncope,fallandtrauma

(26percent),ischemicheartdisease(17percent)and

gastrointestinaldisease(9percent)(Figure12).(139)

•Skilled nursing facility.In2008,therewere349

skillednursingfacilitystaysper1,000beneficiaries

withAlzheimer’sandotherdementiascomparedwith

39staysper1,000beneficiariesforpeoplewithout

theseconditions.(138)

•Home health care.In2008,23percentofMedicare

beneficiariesage65andolderwithAlzheimer’s

disease and other dementias had at least one home

healthvisitduringtheyear,comparedwith

10percentofMedicarebeneficiarieswithout

Alzheimer’sandotherdementias.(140)

2012 Alzheimer’s Disease Facts and Figures use and Costs of Health Care, Long-Term Care and Hospice

Costs of Health Care Services

Withtheexceptionofprescriptionmedications,

averageperpersonpaymentsforallotherhealthcare

services(i.e.,hospital,physicianandothermedical

provider,nursinghome,skillednursingfacilityand

homehealthcare)werehigherforMedicare

beneficiarieswithAlzheimer’sdiseaseandother

dementiasthanforotherMedicarebeneficiariesinthe

sameagegroup(Table8).(138)

table 8: Average Annual Per-Person Payments, from All Sources, for Health Care Services Provided to Medicare Beneficiaries Age 65 and Older with and without Alzheimer’s Disease and Other Dementias, 2008 Medicare Current Beneficiary Survey, 2011 Dollars Beneficiaries with Beneficiaries without Alzheimer’s Alzheimer’s Disease and Disease and Other Dementias Other Dementias

Inpatienthospital $9,732 $3,912

Medicalprovider* 5,967 3,956

Skillednursingfacility 3,812 444

Nursinghome 17,693 786

Hospice 1,749 171

Homehealthcare 1,402 452

Prescriptionmedications** 2,681 2,732

*“Medicalprovider”includesphysician,othermedicalproviderandlaboratoryservices,andmedicalequipmentandsupplies.**Informationonpaymentsforprescriptiondrugsisonlyavailableforpeoplewhowerelivinginthecommunity;thatis,notinanursinghomeorassisted livingfacility.

CreatedfromunpublisheddatafromtheMedicareCurrentBeneficiarySurvey for2008.(138)

Page 44: Alzheimer facts figures 2012

42 use and Costs of Health Care, Long-Term Care and Hospice 2012 Alzheimer’s Disease Facts and Figures

table 9: Specific Coexisting Medical Conditions Among Medicare Beneficiaries Age 65 and Older with Alzheimer’s Disease and Other Dementias, 2009

Percentage of People with Alzheimer’s Disease and Other Dementias Who Also Had Coexisting Condition Coexisting Medical Condition

Coronaryheartdisease 30%

Diabetes 29%

Congestiveheartfailure 22%

Chronickidneydisease 17%

Chronicobstructivepulmonarydisease 17%

Stroke 14%

Cancer 9% CreatedfromunpublisheddatafromtheNational20%SampleMedicareFee-for-ServiceBeneficiariesfor2009.(140)

CreatedfromunpublisheddatafromtheNational20%SampleMedicareFee-for-ServiceBeneficiariesfor2009.(140)

figure 13: Hospital Stays per 1,000 Beneficiaries Age 65 and Older with Specified Coexisting Medical Conditions, with and without Alzheimer’s Disease and Other Dementias, 2009

WithAlzheimer’sdiseaseandotherdementiasWithoutAlzheimer’sdiseaseandotherdementiasHospitalstays

Condition Chronic Congestive Chronic Coronary Stroke Diabetes Cancer kidney heartfailure obstructive arterydisease disease pulmonarydisease

1,042

801

1,002948

998

753

897

592

876

656

835

474

776

477

1,200

1,000

800

600

400

200

0

Impact of Coexisting Medical Conditions on use and Costs of Health Care Services

MedicarebeneficiarieswithAlzheimer’sdiseaseand

otherdementiasaremorelikelythanthosewithoutthe

diseasetohaveotherchronicconditions.(140)Table9

reportstheproportionofpeoplewithAlzheimer’s

diseaseandotherdementiaswhohavecertain

coexistingmedicalconditions.In2009,30percentof

Medicarebeneficiariesage65andolderwith

Alzheimer’s and other dementias also had coronary

heartdisease,29percentalsohaddiabetes,22percent

alsohadcongestiveheartfailure,17percentalsohad

chronickidneydiseaseand17percentalsohadchronic

obstructivepulmonarydisease.(140)

Peoplewithseriouscoexistingmedicalconditionsand

Alzheimer’sandotherdementiasaremorelikelytobe

hospitalizedthanpeoplewiththesamecoexisting

medicalconditionsbutwithoutAlzheimer’sandother

dementias(Figure13).(140)

Page 45: Alzheimer facts figures 2012

43

Similarly,averageper-personpaymentsformany

healthcareservicesarehigherforpeoplewhohave

otherseriouscoexistingmedicalconditionsinaddition

toAlzheimer’sandotherdementiasthanforpeople

whohavethesamemedicalconditionsbutno

Alzheimer’sorotherdementias.Table10showsthe

averageper-persontotalMedicarepaymentsand

averageper-personMedicarepaymentsforhospital,

physician,skillednursingfacility,homehealthand

2012 Alzheimer’s Disease Facts and Figures use and Costs of Health Care, Long-Term Care and Hospice

hospicecareforbeneficiarieswithotherserious

medicalconditionswhoeitherdoordonothave

Alzheimer’sandotherdementias.(140)Medicare

beneficiarieswithaseriousmedicalconditionand

Alzheimer’sandotherdementiashadhigheraverage

per-personpaymentsthanMedicarebeneficiarieswith

thesamemedicalconditionbutwithoutdementia,

withtheexceptionsofhospitalcareandtotalMedicare

paymentsforcongestiveheartfailure.

Average per-Person Medicare Payment

Total Skilled Medicare Hospital Physician Nursing Home Hospice Payments Care Care Facility Care Health Care Care

Selected Medical Condition by Alzheimer’s Disease/Dementia (AD/D) Status

table 10: Average Annual Per-Person Payments by Type of Service and Coexisting Medical Condition for Medicare Beneficiaries Age 65 and Older, with and without Alzheimer’s Disease and Other Dementias, 2009, in 2011 Dollars*

Coronary heart disease

WithAD/D $25,389 $9,138 $1,632 $4,034 $2,531 $2,184

WithoutAD/D 15,748 6,566 1,248 1,229 1,090 318

Diabetes

WithAD/D 24,776 8,696 1,528 3,911 2,608 1,973

WithoutAD/D 13,695 5,359 1,075 1,117 1,033 223

Congestive heart failure

WithAD/D 24,331 10,378 1,685 4,472 2,650 2,739

WithoutAD/D 27,946 10,626 1,683 2,423 2,088 775

Chronic kidney disease

WithAD/D 29,952 11,455 1,807 4,500 2,474 2,382

WithoutAD/D 23,045 9,601 1,582 1,856 1,532 493

Chronic obstructive pulmonary disease

WithAD/D 27,543 10,209 1,720 4,409 2,625 2,466

WithoutAD/D 18,851 8,001 1,413 1,607 1,410 619

Stroke

WithAD/D 25,843 9,003 1,585 4,232 2,398 2,567

WithoutAD/D 18,554 6,979 1,348 2,170 1,760 607

Cancer

WithAD/D 23,782 8,095 1,489 3,392 2,066 2,689

WithoutAD/D 15,564 5,492 1,142 918 733 551 *ThistabledoesnotincludepaymentsforallkindsofMedicareservices,andasaresulttheaverageper-person paymentsforspecificMedicareservicesdonotsumtothetotalperpersonMedicarepayments.

CreatedfromunpublisheddatafromtheNational20%SampleMedicareFee-for-ServiceBeneficiariesfor2009.(140)

Medical Condition by Alzheimer’s Disease/Dementia (AD/D) Status

Page 46: Alzheimer facts figures 2012

44

cognitiveimpairmentandreceivedpaidservicesused

almosttwiceasmanyhoursofcaremonthlyasthose

whodidnothavecognitiveimpairment.(142)

PeoplewithAlzheimer’sandotherdementiasmakeup

alargeproportionofallelderlypeoplewhoreceive

nonmedicalhomecare,adultdaycenterservicesand

nursinghomecare.

•Home care.Accordingtostatehomecareprograms

inConnecticut,FloridaandMichigan,morethan

one-third(about37percent)ofolderpeoplewho

receiveprimarilynonmedicalhomecareservices,

suchaspersonalcareandhomemakerservices,have

cognitiveimpairmentconsistentwithdementia.(143-145)

•Adult day center services.Atleasthalfofelderly

attendeesatadultdaycentershavedementia.(146-147)

•Nursing home care.Sixty-fourpercentofMedicare

beneficiariesage65andolderlivinginanursing

homehaveAlzheimer’sdiseaseandother

dementias.(138)In2009,68percentofallnursing

homeresidentshadsomedegreeofcognitive

impairment,including27percentwhohadverymild

tomildcognitiveimpairmentand41percentwhohad

moderatetoseverecognitiveimpairment(Table11).(148)

InJune2011,47percentofallnursinghome

residentshadadiagnosisofdementiaintheirnursing

homerecord.(149)

•Alzheimer’s special care unit.Nursinghomeshada

totalof80,866bedsinAlzheimer’sspecialcareunits

inJune2011.(150)TheseAlzheimer’sspecialcareunit

bedsaccountedfor72percentofallspecialcareunit

bedsand5percentofallnursinghomebedsatthat

time.Thenumberofnursinghomebedsin

Alzheimer’sspecialcareunitsincreasedinthe1980s

buthasdecreasedsince2004,whentherewere

93,763bedsinsuchunits.(151)

use and Costs of Health Care, Long-Term Care and Hospice 2012 Alzheimer’s Disease Facts and Figures

Use and Costs of Long-Term Care Services

Anestimated60to70percentofolderadultswith

Alzheimer’sdiseaseandotherdementiasliveinthe

communitycomparedwith98percentofolder

adultswithoutAlzheimer’sdiseaseandother

dementias.(138,141)OfthosewithAlzheimer’sdisease

andotherdementiaswholiveinthecommunity,

75percentlivewithsomeoneandtheremaining

25percentlivealone.(138)Astheirdementiaprogresses,

theygenerallyreceivemoreandmorecarefromfamily

andotherunpaidcaregivers.(78)Manypeoplewith

Alzheimer’sandotherdementiasalsoreceivepaid

servicesathome;inadultdaycenters,assistedliving

facilitiesornursinghomes;orinmorethanoneof

thesesettingsatdifferenttimesintheoftenlong

courseoftheirillness.Giventhehighaveragecostsof

theseservices(e.g.,adultdaycenterservices,$70per

day(141);assistedliving,$41,724peryear(141);and

nursinghomecare,$79,110to$87,235peryear(141)),

individualsoftenspenddowntheirassetsand

eventuallyqualifyforMedicaid.Medicaidistheonly

publicprogramthatcoversthelongnursinghome

staysthatmostpeoplewithdementiarequireinthe

latestagesoftheirillness.

use of Long-Term Care Services by Setting

MostpeoplewithAlzheimer’sdiseaseandother

dementiaswholiveathomereceiveunpaidhelpfrom

familymembersandfriends,butsomealsoreceive

paidhomeandcommunity-basedservices,suchas

personalcareandadultdaycentercare.Astudyof

olderpeoplewhoneededhelptoperformdaily

activities—suchasdressing,bathing,shoppingand

managingmoney—foundthatthosewhoalsohad

cognitiveimpairmentweremorethantwiceaslikelyas

thosewhodidnothavecognitiveimpairmentto

receivepaidhomecare.(142)Inaddition,thosewhohad

Page 47: Alzheimer facts figures 2012

45 2012 Alzheimer’s Disease Facts and Figures use and Costs of Health Care, Long-Term Care and Hospice

table 11: Cognitive Impairment in Nursing Home Residents, by State, 2009

Alabama 52,312 29 27 44

Alaska 1,328 32 29 39

Arizona 41,703 48 24 28

Arkansas 33,723 23 29 48

California 259,778 36 26 38

Colorado 40,681 33 29 39

Connecticut 63,252 39 25 36

Delaware 9,842 35 28 37

DistrictofColumbia 5,448 36 26 38

Florida 212,553 41 23 36

Georgia 68,186 16 23 61

Hawaii 8,574 25 22 53

Idaho 12,558 34 26 40

Illinois 169,385 29 32 39

Indiana 84,063 37 29 34

Iowa 48,471 22 31 47

Kansas 35,871 24 31 45

Kentucky 50,942 32 24 44

Louisiana 43,523 25 26 49

Maine 18,802 37 25 38

Maryland 65,917 40 23 37

Massachusetts 103,135 36 23 41

Michigan 104,790 33 26 41

Minnesota 70,474 30 30 40

Mississippi 29,306 23 29 48

Missouri 78,350 31 31 39

Montana 10,795 24 30 46

Nebraska 27,007 28 30 42

Nevada 13,630 43 26 31

NewHampshire 15,831 34 24 42

NewJersey 120,300 42 24 34

NewMexico 13,423 32 28 40

Percentage of residents at each Stage of Cognitive Impairment**

None Very Mild/Mild Moderate/SevereState Total Nursing Home residents*

Page 48: Alzheimer facts figures 2012

46 use and Costs of Health Care, Long-Term Care and Hospice 2012 Alzheimer’s Disease Facts and Figures

table 11 (continued): Cognitive Impairment in Nursing Home residents, by State, 2009

NewYork 232,754 35 25 40

NorthCarolina 89,429 35 24 42

NorthDakota 10,609 22 31 47

Ohio 190,576 30 27 42

Oklahoma 37,263 29 31 40

Oregon 27,099 37 29 34

Pennsylvania 189,524 33 28 40

RhodeIsland 17,388 32 28 40

SouthCarolina 39,616 29 23 48

SouthDakota 11,347 20 31 49

Tennessee 71,723 26 27 48

Texas 192,450 19 30 51

Utah 17,933 38 27 34

Vermont 7,106 31 24 45

Virginia 73,685 34 26 39

Washington 57,335 33 28 39

WestVirginia 21,815 37 21 42

Wisconsin 73,272 35 27 38

Wyoming 4,792 19 28 54

u.S. Total 3,279,669 32 27 41

Percentage of residents at each Stage of Cognitive Impairment**

None Very Mild/Mild Moderate/Severe

*Thesefiguresincludeallindividualswhospentanytimeinanursinghomein2009.**Percentagesforeachstatemaynotsumto100becauseofrounding.

CreatedfromdatafromtheU.S.DepartmentofHealthandHumanServices.(148)

State Total Nursing Home residents*

Page 49: Alzheimer facts figures 2012

47

higher($222perday,or$81,030peryear).(141)

Thirty-sixpercentofnursinghomeshadseparate

Alzheimer’sspecialcareunits.(141)

Affordability of Long-Term Care Services

FewindividualswithAlzheimer’sdiseaseandother

dementiasandtheirfamilieshavesufficientlong-term

careinsuranceorcanaffordtopayout-of-pocketfor

long-termcareservicesforaslongastheservices

areneeded.

•Incomeandassetdataarenotavailableforpeople

withAlzheimer’sorotherdementiasspecifically,but

50percentofMedicarebeneficiarieshadincomes

of$21,774orless,and25percenthadincomesof

$13,116orlessin2010(in2011dollars).Twohundred

percentofthefederalpovertylevelwas$21,780fora

householdofoneand$29,420forahouseholdoftwo

in2011.(152-153)

•FiftypercentofMedicarebeneficiarieshadretirement

accountsof$2,095orless,50percenthadfinancial

assetsof$30,287orless,and50percenthadtotal

savingsof$52,793orless,equivalenttolessthanone

yearofnursinghomecare.(152)

Long-Term Care Insurance

In2010,about7.3millionpeoplehadlong-termcare

insurancepolicies.(154)Privatehealthandlong-termcare

insurancepoliciesfundedonlyabout9percentoftotal

long-termcarespendingin2006,representing$19.0

billionofthe$210.5billion(in2011dollars)inlong-term

carespending.(155)

Medicaid Costs

Medicaidcoversnursinghomecareandotherlong-term

careservicesinthecommunityforindividualswho

meetprogramrequirementsforlevelofcare,income

andassets.Toreceivecoverage,beneficiariesmust

havelowincomesorbepoor.Mostnursinghome

residentswhoqualifyforMedicaidmustspendallof

theirSocialSecurityincomeandanyothermonthly

income,exceptforaverysmallpersonalneeds

allowance,topayfornursinghomecare.Medicaidonly

2012 Alzheimer’s Disease Facts and Figures use and Costs of Health Care, Long-Term Care and Hospice

Costs of Long-Term Care Services

Costsarehighforcareprovidedathomeorinanadult

daycenter,assistedlivingfacilityornursinghome.The

followingestimatesareforallusersoftheseservices.

TheonlyexceptionisthecostofAlzheimer’sspecial

careunitsinnursinghomes,whichonlyappliestothe

peoplewithAlzheimer’sdiseaseandotherdementias

whoareintheseunits.

•Home care.In2011,theaveragecostfora

nonmedicalhomehealthaidewas$21perhour,or

$168foraneight-hourday.(141)

•Adult day centers.In2011,theaveragecostofadult

dayserviceswas$70perday.(141)Ninety-fivepercent

ofadultdaycentersprovidedcareforpeoplewith

Alzheimer’s disease and other dementias, and

2percentofthesecenterschargedanadditionalfee

fortheseclients.

•Assisted living.In2011,theaveragecostforbasic

servicesinanassistedlivingfacilitywas$3,477per

month,or$41,724peryear.(141)Seventy-twopercent

ofassistedlivingfacilitiesprovidedcaretopeople

withAlzheimer’sdiseaseandotherdementias,and

52percenthadaspecificunitforpeoplewith

Alzheimer’sandotherdementias.Infacilitiesthat

chargedadifferentrateforindividualswith

Alzheimer’sandotherdementias,theaveragerate

was$4,619permonth,or$55,428peryear,for

thiscare.

•Nursing homes.In2011,theaveragecostfora

privateroominanursinghomewas$239perday,or

$87,235peryear.Theaveragecostofasemi-private

roominanursinghomewas$214perday,or$78,110

peryear.(141)Eightypercentofnursinghomesthat

providecareforpeoplewithAlzheimer’sdisease

chargethesamerate.Inthefewnursinghomesthat

chargedadifferentrate,theaveragecostforaprivate

roomforanindividualwithAlzheimer’sdiseasewas

$12higher($251perday,or$91,615peryear)and

theaveragecostforasemi-privateroomwas$8

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48

Out-of-Pocket Costs for Health Care and Long-Term Care Services

Despiteothersourcesoffinancialassistance,

individualswithAlzheimer’sdiseaseandother

dementiasandtheirfamiliesstillincurhighout-of-

pocketcosts.ThesecostsareforMedicareandother

healthinsurancepremiumsandfordeductibles,

copaymentsandservicesnotcoveredbyMedicare,

Medicaidoradditionalsourcesofsupport.

In2008,Medicarebeneficiariesage65andolderwith

Alzheimer’sandotherdementiaspaid$9,368out-of-

pocketonaverageforhealthcareandlong-termcare

servicesthatwerenotcoveredbyadditionalsources

(Table7,page39).(138)Averageper-personout-of-

pocketpaymentswerehighestforindividualslivingin

nursinghomesandassistedlivingfacilitiesandwere

almostsixtimesasgreatastheaverageper-person

paymentsforindividualswithAlzheimer’sdiseaseand

otherdementiaslivinginthecommunity($3,167per

person).(138)In2012,totalout-of-pocketspendingfor

individualswithAlzheimer’sandotherdementiasis

estimatedat$33.8billion(Figure11,page40).A17

BeforeimplementationoftheMedicarePartD

PrescriptionDrugBenefitin2006,out-of-pocket

expenseswereincreasingannuallyforMedicare

beneficiaries.(157)In2003,out-of-pocketcostsfor

prescriptionmedicationsaccountedforabout

one-quarteroftotalout-of-pocketcostsforall

Medicarebeneficiariesage65andolder.(158) The

MedicarePartDPrescriptionDrugBenefithashelped

toreduceout-of-pocketcostsforprescriptiondrugsfor

manyMedicarebeneficiaries,includingbeneficiaries

withAlzheimer’sandotherdementias.(159)Sixty

percentofallMedicarebeneficiarieswereenrolledina

MedicarePartDplanin2010,andtheaveragemonthly

premiumforMedicarePartDwas$40.72in2011

(range:$14.80to$133.40).(159) As noted earlier,

use and Costs of Health Care, Long-Term Care and Hospice 2012 Alzheimer’s Disease Facts and Figures

makesupthedifferenceifthenursinghomeresident

cannotpaythefullcostofcareorhasafinancially

dependentspouse.

Thefederalandstategovernmentsshareinmanaging

andfundingtheprogram,andstatesdiffergreatlyin

theservicescoveredbytheirMedicaidprograms.

Medicaidplaysacriticalroleforpeoplewithdementia

whocannolongeraffordtopayfortheirlong-term

careexpensesontheirown.In2008,58percentof

Medicaidspendingonlong-termcarewasallocatedto

institutionalcare,andtheremaining42percentwas

allocatedtohomeandcommunity-basedservices.(155)

TotalMedicaidspendingforpeoplewithAlzheimer’s

diseaseandotherdementiasisprojectedtobe

$35.5billionin2012.A17AbouthalfofallMedicaid

beneficiarieswithAlzheimer’sdiseaseandother

dementias are nursing home residents, and the rest

liveinthecommunity.(156) Among nursing home

residentswithAlzheimer’sdiseaseandother

dementias,51percentrelyonMedicaidtohelppayfor

theirnursinghomecare.(156)

In2008,totalper-personMedicaidpaymentsfor

Medicarebeneficiariesage65andolderwith

Alzheimer’sandotherdementiaswere19timesas

greatasMedicaidpaymentsforotherMedicare

beneficiaries.Muchofthedifferenceinpaymentsfor

beneficiarieswithAlzheimer’sandotherdementiasis

duetothecostsassociatedwithlong-termcare

(i.e.,nursinghomesandotherresidentialcarefacilities,

suchasassistedlivingfacilities).Medicaidpaid

$23,953(in2011dollars)perpersonforMedicare

beneficiarieswithAlzheimer’sandotherdementias

livinginalong-termcarefacilitycomparedwith$222

forthosewiththediagnosislivinginthecommunity

and$527forthosewithoutthediagnosis(Table7,

page39).(138)

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49 2012 Alzheimer’s Disease Facts and Figures use and Costs of Health Care, Long-Term Care and Hospice

however,themostexpensivecomponentofout-of-

pocketcostsforpeoplewithAlzheimer’sandother

dementiasisnursinghomeandotherresidentialcare.

Out-of-pocketcostsfortheseservicesarelikelyto

continueincreasing.

Use and Costs of Hospice Care

Hospicesprovidemedicalcare,painmanagementand

emotionalandspiritualsupportforpeoplewhoare

dying,includingpeoplewithAlzheimer’sdiseaseand

otherdementias.Hospicesalsoprovideemotionaland

spiritualsupportandbereavementservicesforfamilies

ofpeoplewhoaredying.Themainpurposeofhospice

careistoallowindividualstodiewithdignityand

withoutpainandotherdistressingsymptomsthat

oftenaccompanyterminalillness.Individualscan

receivehospicecareintheirhomes,assistedliving

residencesornursinghomes.Medicareistheprimary

sourceofpaymentforhospicecare,butprivate

insurance,Medicaidandothersourcesalsopayfor

hospicecare.

In2009,6percentofallpeopleadmittedtohospices

intheUnitedStateshadaprimaryhospicediagnosis

ofAlzheimer’sdisease(61,146people).(160) An

additional11percentofallpeopleadmittedtohospices

intheUnitedStateshadaprimaryhospicediagnosis

ofnon-Alzheimer’sdementia(119,872people).(160)

Hospicelengthofstayhasincreasedoverthepast

decade.Theaveragelengthofstayforhospice

beneficiarieswithaprimaryhospicediagnosisof

Alzheimer’sdiseaseincreasedfrom67daysin1998

to106daysin2009.(160)Theaveragelengthofstayfor

hospicebeneficiarieswithaprimarydiagnosisof

non-Alzheimer’sdementiaincreasedfrom57days

in1998to92daysin2009.(160)Averageper-person

hospicecarepaymentsacrossallbeneficiarieswith

Alzheimer’sdiseaseandotherdementiaswere

10timesasgreatasaverageper-personpaymentsfor

allotherMedicarebeneficiaries($1,749perperson

comparedwith$171perperson).(138)

Projections for the Future

Totalpaymentsforhealthcare,long-termcareand

hospiceforpeoplewithAlzheimer’sdiseaseandother

dementiasareprojectedtoincreasefrom$200billion

in2012to$1.1trillionin2050(in2012dollars).

Thisdramaticriseincludesasix-foldincreasein

governmentspendingunderMedicareandMedicaid

andafive-foldincreaseinout-of-pocketspending.A17

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speciAl repOrt

peOple with Alzheimer’s diseAse And Other dementiAs whO live AlOne.

At least 800,000 Americans with Alzheimer’s disease live alone.

2012 Alzheimer’s Disease Facts and Figures Special report: People with Alzheimer’s Disease and Other Dementias Who Live Alone

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51

Therighttoresidewithinone’shomeisafundamental

humanright,recognizedbytheUniversalDeclaration

ofHumanRightsoftheUnitedNations.Article12of

thatdocumentstatesthat“Nooneshallbesubjected

toarbitraryinterferencewithhisprivacy,family,home

orcorrespondence,nortoattacksuponhishonourand

reputation.”(161)AndArticle17statesthat“Nooneshall

bearbitrarilydeprivedofhisproperty.”(161)Aspeople

growolder,reachingage65andbeyond,theyare

morelikelytolivealone,andthosewithsevere

cognitiveimpairmentmaynotbeabletocarefor

themselves.Determiningthebestwaytoprovide

asafeenvironmentandadequatecareforsomeone

withseverecognitiveimpairmentwhochoosestolive

aloneisoftendifficultandfraughtwithethical,societal

andemotionaldilemmas.(111,162)ThisSpecialReport

attemptstoraiseawarenessoftheissuesthatarise

whenindividualswithAlzheimer’sdiseaseand

otherdementiaslivealone,andtostimulatediscussion

ofbetterwaystomeettheuniqueneedsofthese

individuals.

How Many People in the United States with Alzheimer’s Disease and Other Dementias Live Alone?

Older Americans Living Alone

Accordingto2011datafromtheU.S.CensusBureau,(163)

about29percentofAmericansage65orolder—about

11.3millionpeople—livealone.A20Theproportionof

peoplewholivealoneincreaseswithageandishigher

amongwomenthanmen(Figure14).AmongAmerican

womenatleast85yearsold,morethan56percent

livealone.

CreatedfromdatafromtheU.S.CensusBureau.(163)

60

50

40

30

20

10

0

AgeRange 65-74 75-84 85+

MenWomenPercentage

16.2%

27.7%

19.6%

42.3%

30.2%

56.3%

figure 14: Percentage of Men and Women Age 65 or Older in the United States Who Live Alone

2012 Alzheimer’s Disease Facts and Figures Special report: People with Alzheimer’s Disease and Other Dementias Who Live Alone

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52

Living Alone with Dementia

ThepercentageofAmericanswithAlzheimer’s

diseaseandotherdementiaswholivealoneisless

straightforwardtodetermine,butseveralsourcesof

informationyieldconsistentestimates.Forthe

remainderofthisreport,countsofpeoplewholive

aloneincludeonlythoselivinginthecommunity;that

is,itdoesnotincludepeoplewholiveinassistedliving

facilities,nursinghomes,orsimilarfacilitiesthat

provideresidentialsupport.

Medicare Current Beneficiary Survey

TheMedicareCurrentBeneficiarySurvey(MCBS)isan

ongoingsurveyofabout13,000Medicarebeneficiaries

chosentoberepresentativeofMedicarebeneficiaries

nationwide.Itprovidesthelargestandmostrecent

estimatesofhowmanyAmericanswhohavea

diagnosisofdementialivealone.Dataarereportedfor

2008,themostrecentyearforwhichdataare

available.(138),A21

AmongMedicarebeneficiarieswhoreportedhaving

beendiagnosedwithAlzheimer’sdiseaseorother

dementiasintheMCBS,42percentlivedinanursing

homeorotherfacilitythatprovidedresidentialsupport

(e.g.,assistedlivingfacility),44percentlivedinthe

communitywithanotherperson,andtheremaining

15percentlivedaloneinthecommunity.Amongthose

wholivedinthecommunity,25percent—oroneout

offour—livedalone.(138)

AsreportedinthePrevalencesectionofthisreport,it

isestimatedthat5.4millionpeopleintheUnited

StateshaveAlzheimer’sdisease(page14).Assuming

thatthelivingsituationsofpeoplewhohave

Alzheimer’sdiseasearesimilartothelivingsituations

ofpeoplewhohavealltypesofdementiaintheMCBS

data,itcanbeestimatedthat800,000(15percent

of5.4million)peopleintheUnitedStateshave

Alzheimer’sdiseaseandlivealoneinthecommunity.

Aging, Demographics, and Memory Study

Anotherfrequentlycitedresourceforstatistical

informationaboutpeoplewhohaveAlzheimer’s

disease and other dementias is the Aging,

Demographics,andMemoryStudy(ADAMS).The

ADAMSdatacitedhereincluded1,770peoplechosen

torepresentthecharacteristicsofAmericansage71or

olderlivinginthe48contiguousstatesintheyears

2000and2002.(164-165)Amongparticipantsinthestudy

whometthediagnosticcriteriafordementia,

32.4percentlivedalone.(165-166)However,thisstudy

includedpeoplewholivedaloneinresidentialcare

facilities,sothisvalueisprobablyhigherthanthe

percentagewholivedaloneinthecommunity.

Other Studies

Inastudyof1,000peoplewhoprovideunpaidcarefor

someonewithAlzheimer’sdiseaseorotherdementias

wholivedinthecommunity,21percentindicatedthat

thecarerecipientlivedalone.(167)Thispercentage

probablyunderestimatesthenumberofpeoplewith

dementiawholivealonebecauseasmanyasone-third

toone-halfofpeoplewithdementiawholivealone

havenoidentifiablecaregiver.(168-170)

Anothersurveyaskedanationallyrepresentative

sampleofcaregiversaboutthelivingsituationoftheir

carerecipient.Ofthe423carerecipientsolderthan

50whohadAlzheimer’sdiseaseandwholivedin

thecommunity,100(25percent)livedalone.(102) As

withtheprecedingstudy,thispercentagemaybean

underestimate.

Severalsmallerstudiesduringthepasttwodecades

havefoundthat20to35percentofpeoplewith

dementiawholivedinthecommunity(notinanursing

homeorassistedlivingfacility)livedalone.(168-169,171-173)

Summary

Theavailablesourcesofinformationconsistently

indicatethatatleast15percentofAmericans(orone

outofseven)whohaveAlzheimer’sdiseaseandother

dementiaslivealoneinthecommunity.Thestudies

citedinadditiontotheMCBSdatasupportthe

conclusionthatatleast800,000peopleintheUnited

StateshaveAlzheimer’sdiseaseandlivealoneinthe

community.Addingpeoplewhohaveotherdementias

wouldresultinanevenlargernumberofindividuals

withdementiawholivealoneinthecommunity.

2012 Alzheimer’s Disease Facts and Figures Special report: People with Alzheimer’s Disease and Other Dementias Who Live Alone Special report: People with Alzheimer’s Disease and Other Dementias Who Live Alone 2012 Alzheimer’s Disease Facts and Figures

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53

Racial and Geographic DisparitiesStudiesofthedemographiccharacteristicsofpeople

withAlzheimer’sdiseasewholivealonearesparse,

butthereissomeevidenceofsubstantialethnic,

geographicandculturaldifferences.(170) Among all

Americansage65andolderlivinginthecommunity,

non-HispanicwhitewomenandAfrican-American

womenaremorelikelythanwomenofotherracesto

livealone.(173)Also,African-Americanmenolderthan

65aremorelikelythanAsianornon-Hispanicwhite

meninthesameagerangetolivealone.(173) These

disparitiesmayextendtoindividualswithAlzheimer’s

diseaseorotherdementias.Inonestudyamongolder,

community-dwellingAfrican-Americanswithprobable

Alzheimer’sdiseaselivinginoneregionoftheUnited

States,52percentlivedalone.(174)Morestudiesare

neededtoestablishtheexistenceofracialand

geographicdisparitiesandtodeterminetheunderlying

causesofsuchdisparities.

Typical Characteristics of People with Alzheimer’s Disease and Other Dementias Who Live AloneSeveralstudieshavecollectedinformationabout

peoplewhohavedementiaandlivealoneinthe

communityandcomparedthemwithpeoplewhohave

dementiaandlivewithatleastoneotherpersoninthe

community.(168-169,171-172,175-176)Thesestudieshave

describedcommoncharacteristicsofpeoplewith

dementiawholivealone.Onaverage,peoplewith

dementiawholivealoneinthecommunitytendtobe

older,femaleandlesscognitivelyimpairedthanpeople

withdementiawholiveinthecommunitybutdonot

livealone.Thoselivingalonearealsomorelikelytolive

inpoverty,tohavehaddementiaforashorterperiod

andtohavefewerimpairmentsinperformingdaily

activities.Note,however,thatmanyindividuals

withdementiawholivealonedonotsharethese

averagecharacteristics.

Despitefindingsthatpeoplewithdementiawholive

alonearelessimpaired,onaverage,thanthosewith

dementiawholivewithothers,mostpeoplewith

dementiawholivealonestillhavesignificant

impairmentsintheirabilitytoperformtaskssuch

asmanagingmoney,shopping,travelinginthe

community,housekeeping,preparingmealsand

takingmedicationscorrectly.(176-177)

Risks Encountered by People with Alzheimer’s Disease and Other Dementias Who Live AloneEvenpeoplewithearly-stageAlzheimer’sdisease

experiencememorylossthatdisruptsdailylife,

challengesinplanningorsolvingproblems,difficulty

completingfamiliartasks,confusionwithtimeorplace,

andotherdisruptionsintheirabilitytofunctioninthe

home.(178-179)Asthediseaseprogresses,anaffected

individualneedshelpwithbasicactivitiesofdailyliving

suchasbathing,dressing,eatingandusingthe

bathroom.Theyarealsolikelytohavecompleteloss

oforientationintimeandspace,andtheytendto

wanderorbecomelost.(179)Theymaybeunableto

solveproblemsormakegoodjudgments,andthey

mayexperiencefrequentbowelandbladder

incontinence.(180)

Despitethedeclinesinfunctionassociatedwith

Alzheimer’sdisease,manystudieshaveshownthat

mostolderpeopleprefertoliveintheirhomesaslong

aspossible,eveniftheylivealone.(181)Improved

supportservices,includingin-homecare,

transportationandfinancialservices,havehelped

manyoldercommunity-dwellingpeoplestayintheir

homeslongerthanwouldhavebeenpossible

otherwise.(181-182)Nevertheless,inmanycommunities

supportservicesarestillinadequateforpeoplewith

dementiawholivealone.Cognitiveimpairmentand

dementiadonotruleoutlivingalone,(162)butallpeople

withprogressivedementiawillbeunabletosafelylive

aloneinthelaterstagesofthedisease.Furthermore,

peoplewithdementiawholivealoneareexposedto

risksthatexceedtherisksencounteredbypeoplewith

dementiawholivewithothers.Asdiscussedinthe

remainderofthissection,theseriskshaveimportant

implicationsfortheaffectedperson,caregivers,health

careproviders,socialserviceprovidersand

policymakers.

2012 Alzheimer’s Disease Facts and Figures Special report: People with Alzheimer’s Disease and Other Dementias Who Live Alone

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54

Delayed or Missed Diagnosis

Asdescribedin2011 Alzheimer’s Disease Facts and

Figures,(183)asmanyasone-halfofpeoplewhosatisfy

thecriteriaforAlzheimer’sandotherdementiashave

neverreceivedadiagnosis.Delayedormissed

diagnosismaybeevenmorecommonamongpeople

wholivealone.

Inastudyofpeoplewithdementiawholiveinthe

community,thoselivingalonewerelesslikelyto

recognizetheirowncognitiveimpairmentand

thereforelesslikelytorecognizedangeroussituations

orproblemsperformingtasksthatarecriticalfordaily

living.(176)Inthesamestudy,physiciansandcaregivers

weresignificantlylesslikelytorecognizecognitive

impairmentinpeoplelivingalonethanpeopleliving

withothers.(176)Severalpreviousstudiesfoundsimilar

results.(177,184-185)Onestudy,however,foundthat

peoplediagnosedwithdementiawhilelivingalone

wereatanearlierstageofdiseasethanpeople

diagnosedwhilelivingwithothers.(186)

As discussed in 2011 Alzheimer’s Disease Facts and

Figures,delayedormisseddiagnosisofdementiacan

leadtounnecessaryburdensontheaffectedperson

andtheircaregivers.(183)Detrimentalconsequencesof

delayed or missed diagnosis include:

•Lostopportunitiestomanagesymptoms.

•Potentialmisuseofmedicationsthatmayworsen

cognitivefunction.

•Missedopportunitiestomanagecoexistingmedical

conditionsthatmayworsencognitivefunction.

• Inadequatesupportfromhealthcareprovidersand

unpaidcaregiverswhocanhelptheaffectedperson

managetheirownhealthcareanduseof

prescriptionmedication.

• Increasedanxietyaboutthecausesofsymptoms.

•Lostopportunitiesforcaregiverstoobtaintraining,

educationandsupportservices.

•Lostopportunitiestoobtainin-homesupport

services.

• Increasedburdenoncaregiversowingtolackof

accesstosupportservices.

•Missedopportunitiestopreventfallsandinjuries,

includingpotentiallyfatalinjuries.

•Potentialfinancialmismanagementandsusceptibility

toscamsandfraud.

•Delaysinplanningforfuturefunctionaldeclines.

•Delaysinplanningforfuturecareneedsaswellas

legalandfinancialissues.

•Lostopportunitiestoparticipateinclinicaltrials,

whichoftenprovideexpertmedicalcareatlittleor

nocost.

Nursing Home Placement

Olderpeoplewithdementiahaveanumberofhousing

options,includingremainingintheirownhomes,living

withrelativesorothersinthecommunity,orresidingin

anindependentlivingorretirementcommunity,an

assistedlivingfacilityoranursinghome.Althoughthe

servicesprovidedbyspecificfacilitiesdifferacross

states,nursinghomesprovidethemost

comprehensiveservices,allowtheleastindependence

andarethemostexpensive.Asnotedinthisreport’s

UseandCostsofCaresection(page47),average

annualcostsfornursinghomesaremorethandouble

theaverageannualcostsofassistedlivingfacilities.

Becauseoftheincreasedcostandlossof

independenceassociatedwithplacementinanursing

home,strategiestopreventordelaynursinghome

placementaredesirable.Ithasbeenestimatedthat

delayinglong-termcarebyonemonthforeachperson

intheUnitedStatesage65oroldercouldsave

$60billioneachyear.(187)

Twostudieshavefoundthatpeoplewithdementia

wholivealoneareplacedintonursinghomesearlier,

onaverage,thanotherwisesimilarpeoplewith

dementiawhodonotlivealone.(111, 188)Thereasonsfor

earlierplacementinnursinghomesarenotclear,but

theymayberelatedtotheincreasedriskof

malnutrition,illnessandfall-relatedandotherinjuries

amongpeoplewithdementiawholivealonecompared

withthosewholivewithothers.

2012 Alzheimer’s Disease Facts and Figures Special report: People with Alzheimer’s Disease and Other Dementias Who Live Alone Special report: People with Alzheimer’s Disease and Other Dementias Who Live Alone 2012 Alzheimer’s Disease Facts and Figures

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55

Self-Neglect

Althoughmanypeoplewithdementiaareableto

performbasicaspectsofself-care,severalstudies

havefoundthatpeoplewithdementiawholivealone

areatincreasedriskofinadequateself-care,including

malnutrition,untreatedmedicalconditions,inadequate

clothingorhousing,andpoorhygiene.(171,189-192)

Inadequateself-carehasbeencitedasacauseof

increasedneedforemergencymedicalservices

amongpeoplewithdementiawholivealone.(190,193)

Theissueofinadequateself-careiscompoundedby

theobservationthatmanypeoplewhoareunableto

careforthemselvesrefusehelp.(194)

Falls, Wandering, emergencies and Fatal Injuries

PeoplewithAlzheimer’sdiseaseandotherdementias

commonlyhaveimpairedjudgment,problem-solving

abilities,visualperceptionandspatialperception,as

wellasdisorientation.Theseimpairmentssignificantly

increasetheriskoffalls.(195-196)Fallsareamajorcause

ofseriousinjuryandemergencydepartmentvisitsin

theelderly.(197)Individualswholivealonearelesslikely

toobtaintimelymedicalassistancewhenneeded,

suchasafterafall.(198)

PeoplewithAlzheimer’sdiseaseandotherdementias,

especiallythoselivingalone,arealsoatincreasedrisk

ofwanderingawayfromhomeunattended.(199)

Wanderingisasignificantsafetyriskforthese

individualsandfrequentlyendsininjuriesordeath.(199)

Whensomeonelivesalone,thereisnooneto

promptlynoticeandreporttheirabsence;thus,

wanderingforaysmaybeprolonged,increasingthe

chancethattheyresultininjuryordeath.

TheimpairmentsassociatedwithAlzheimer’sdisease

andotherdementiascanbecompoundedwhenan

individuallivesalone.Forexample,ananalysisof

householdfiresfoundthatolderpeoplewholivealone

areathigherriskofdyingfromthosefiresthanother

olderpeople.(200)Inaddition,olderpeoplewith

dementiawholivealonearemorelikelytoneed

emergencymedicalservicesbecauseofself-

neglect.(190,193)Overall,peoplewithdementiawholive

aloneareatgreaterriskofaccidentaldeaththanthose

livingwithothers.Thisincreasedriskmaybedueto

lackofrecognitionofharmanddelaysinseeking

medicalhelp.(198)

Psychiatric Symptoms

Ingeneral,peoplewithAlzheimer’sdiseaseand

otherdementiashavehighratesofpsychiatric

symptoms—includingdepression,agitationand

psychosis—comparedwithpeoplewhohavenormal

cognitivefunction.(176,201-206)Thesesymptomsare

associatedwithfunctionallimitations(201) and increased

riskofnursinghomeplacement.(111)Amongpeople

withdementia,psychiatricsymptomshavenotbeen

foundtobemorecommonamongthoselivingalone

thanamongthoselivingwithothers.(176,189) This issue

maynothavebeenthoroughlystudied,however,

becausepeoplewhodeveloppsychiatricsymptoms

whilelivinginthecommunityareoftenmovedto

residentialcarefacilities,wheretheyarenolonger

includedinstudiesofpeoplelivinginthecommunity.

Social Isolation and Loneliness

Socialisolationandlonelinessaresignificantproblems

forpeoplewithdementiawholivealone.(207)

Unfortunately,theseproblemshavereceivedonly

limitedattentionfromresearchstudies.

Peoplewithdementiatendtowithdrawfromsituations

thatprovidesocialsupport,suchasworking,

volunteeringandcommunityactivities,(207)exacerbating

socialisolationandloneliness.Buttheyalsorecognize

theimportanceofhavingastrongsocialsupport

network,havingthereassuranceofregularcontact

withsomeonewhochecksonthem,getting

assistancewithdailyactivitiesandhaving

companionship.(175,207)Futureresearchthatexplores

howtobridgethedesireforsocialconnectionswith

thetendencytowithdrawfromsocialexperiencesmay

resultinwaystodecreasetheisolationandloneliness

experiencedbymanypeoplewithAlzheimer’sdisease

andotherdementiaswholivealone.

2012 Alzheimer’s Disease Facts and Figures Special report: People with Alzheimer’s Disease and Other Dementias Who Live Alone

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Caregiving for People with Dementia Who Live Alone

Amongpeoplewithdementiawholivealone,asmany

asone-thirdtoone-halfdonothaveanidentifiable

caregiver.(168-170)Suchindividualsmayhavelittleorno

supportforconductingactivitiesofdailyliving(ADLs),

andtheyarelikelytobeevenmoreisolatedfrom

formalsourcesofsupportthanarethosewitharegular

caregiver.Forexample,lackofacaregivermayhinder

thedetectionanddiagnosisofdementia(175,208-209) and

placetheindividualatfurtherdisadvantagewithregard

toaccessinghealthandsocialservices.Asa

consequence,peoplewithdementiawholivealone

andhavenoregularcaregiveraremorelikelythan

thosewithacaregivertorequireanemergency

responsefromagenciesprovidingmedical,law

enforcementoradultprotectiveservices.(210-211)

Insomecommunities,informalsupportnetworksmay

provideassistancetopeoplewhohavedementiaand

livealoneintheirhomes.(175,211)Suchnetworksmay

involveneighbors,lettercarriers,utilityservice

personnelandotherindividualswhoprovideservices

tohouseholds.Theseindividualscanbeinvaluable,but

theyrarelyhavetheresourcesorcommitmentthat

dedicatedcaregiversprovideandthatareoften

neededbyapersonwhohasdementiaandlivesalone.

Somemunicipalitieshaveexperimentedwithprograms

totrainserviceprovidershowtorecognizepeoplein

needofassistanceandreferthemtoanappropriate

agency,buttheseprogramsarenotwidespreadand

theireffectivenessisnotknown.(175)

Unmet Needs of People with Alzheimer’s Disease and Other Dementias Who Live Alone

Theprecedingdiscussionoftherisksexperiencedby

peoplewithAlzheimer’sdiseaseandotherdementias

wholivealonebringstotheforefrontmanyofthe

unmetneedsofthispopulation.Studiesspecifically

focusingonthisissuehaveconsistentlyfoundthat

peoplewithdementiawholivealonehavesignificantly

moreunmetneedsthanpeoplewithdementiawho

livewithothers.(189,212)Commonlyidentifiedunmet

needs include:(175,189,212)

•Havingsomeonetotakecareofhouseholdchores.

•Gettinghelpforself-care.

•Preventionofaccidentsandaccidentalself-harm.

•Needforsocialinteraction.

•Recognitionof—andhelpfor—psychological

distress and health issues, such as eyesight and

hearingproblems.

Health Care utilization

Studieshaveexaminedtheuseofhealthcareand

socialresourcesamongpeoplewithdementia.Most

havefoundthatthoselivingaloneusehealthcare

servicesatlowerratesbutsocialservices(suchas

home-deliveredmeals,daycareandhomecare

services)athigherratesthanpeoplewithdementia

wholivewithothers.(168,172,191,213-217)

Datafromthe2008MCBS,summarizedinTable12,

showthatpeoplewhohadadiagnosisofdementia

andlivedalonehadsimilartotalhealthcarecostsas

peoplewhohadadiagnosisofdementiabutdidnot

livealone.(138)Thetypesofhealthcareservicesused

bythesetwogroupsdifferedtosomedegree,as

thosewholivedalonehadhighercostsforhome

healthcareandoutpatienthealthcareinstitutionsbut

lowercostsforinpatienthospitalservices,hospice

careandprescriptionmedications.

TheMCBSalsocollectedinformationaboutthe

numberofhospitalstaysanduseofskillednursing

facilities.Forevery1,000peoplewhohaddementia

andlivedalonetherewere744hospitalstaysand

272staysinaskillednursingfacility.The

correspondingnumbersforpeoplewhohada

diagnosisofdementiabutlivedwithsomeoneelse

were705hospitalstaysand139staysinaskilled

nursingfacility.(138)

2012 Alzheimer’s Disease Facts and Figures Special report: People with Alzheimer’s Disease and Other Dementias Who Live Alone Special report: People with Alzheimer’s Disease and Other Dementias Who Live Alone 2012 Alzheimer’s Disease Facts and Figures

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In-Home Support Services

Inrecentyears,in-homesupportservicesforolder

adultsandalliedservicessuchastransportationhave

becomemorewidelyavailable.(181)However,theyoften

donotmeettheuniqueneedsofpeoplewithdementia

wholivealone,whichoftenrequireatrusting

relationshipsotheaffectedpersoniswillingtoaccept

help.Peoplewithdementiaalsoneedregularcontact

andinteractionwiththesamecaregiverssothat

changesintheirfunctionalabilitiescanbeobserved

andaccommodated,theirhealthcarecanbe

coordinated,andtheyhavesomeonetoescortthem

whiletravelingorgoingtothedoctor.Further

improvementsinmeetingtheneedsofpeoplewith

dementiawholivealonemayimprovetheirqualityof

lifeandreduceoverallhealthcarecosts.(187, 218)

Conclusion

Atleast800,000peopleintheUnitedStateswhohave

Alzheimer’sdiseasearelivingalone,andpeoplewho

haveotherformsofdementiaaddsubstantiallytothat

total.Peoplewithdementiawholivealoneareatgreater

riskofmissedordelayeddiagnosis,inadequate

self-care,socialisolation,falls,unattendedwandering,

injuriesanddeaththanpeoplewhohavedementiabut

wholivewithothersinthecommunity.Inaddition,

thosewholivealonearemorelikelytobeplacedinto

anursinghomeearlierthanthosewholivewithothers,

increasingoverallhealthcarecosts.Betterwaysto

meettheneedsofpeoplewhohavedementiaandwho

livealonemayimprovetheirqualityoflifeandreduce

overallhealthcarecosts.

Inpatienthospital $7,377 $9,782 -25%

Medicalcareprovider 7,015 6,794 +3%

Hospice 418 1,285 -67%

Otherhealthcareinstitutions* 3,851 1,219 +216%

Homehealthcare 2,162 1,327 +63%

Prescriptionmedications 3,671 4,638 -21%

Total** 25,389 25,943 -2%

*DefinedbyMedicareasinstitutionalchargesforhospitaloutpatientservices.Whenapatientvisitsahospitalasanoutpatientandincurschargesformedicalservices,paymentsforhealthcareproviderssuchasphysiciansarerecordedas“MedicalCareProvider”payments,butcostsforsupplies,laboratoryservices,otherstaff,equipmentandfacilitiesarerecordedas“Otherinstitutions”payments.**Paymentstoservicesdonotequaltotalpaymentsexactly,duetotheeffectofpopulationweighting.

CreatedfromdatafromtheMedicareCurrentBeneficiarySurveyfor2008.(138)

table 12: Average Per-Person Payments for Health Care Services, Medicare Beneficiaries Age 65 and Older with a Reported Diagnosis of Dementia and Who Live in the Community, by Living Situation, 2008 Current Beneficiary Survey, 2011 Dollars

Beneficiaries Who Beneficiaries Who Alone/Live with Live Alone Live with Someone else Someone Else)

Percentage Average Costs Per Person Difference (Live

Type of Health Care Service

2012 Alzheimer’s Disease Facts and Figures Special report: People with Alzheimer’s Disease and Other Dementias Who Live Alone

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58 Appendices 2012 Alzheimer’s Disease Facts and Figures

A1.NumberofAmericansage65andolderwithAlzheimer’sdiseasefor2012:Thenumber5.2millionisbasedonlinearextrapolationfrompublishedprevalenceestimatesfor2010(5.1million)and2020(5.7million).SeeHebertLE,ScherrPA,BieniasJL,BennettDA,EvansDA.Alzheimer’sdiseaseintheU.S.population:Prevalenceestimatesusingthe2000Census.ArchivesofNeurology2003;60:1119–22.TheseprevalencenumbersarebasedonincidencedatafromtheChicagoHealthandAgingProject(CHAP).ArecentanalysisofCHAPdatashowedthattheriskofAlzheimer’sdidnotchangeover11years,whichsupportsthevalidityofalinearextrapolationbasedoncurrentcensusdata.SeeHebertLE,BieniasJL,AggarwalNT,WilsonRS,BennettDA,ShawRC,etal.ChangeinriskofAlzheimerdiseaseovertime.Neurology2010;75(9):786-91.

A2.ProportionofAmericansage65andolderwithAlzheimer’sdisease:The13percentiscalculatedbydividingtheestimatednumberofpeopleage65andolderwithAlzheimer’sdisease(5.2million)bytheU.S.populationage65andolderin2010,thelatestavailabledatafromtheU.S.CensusBureau(40.3million)=13percent.Thirteenpercentisthesameas1in8. A3.ProportionofAmericansage85andolderwithAlzheimer’sdisease:The45percentiscalculatedbydividingthenumberofpeopleage85andolderwithAlzheimer’sdisease(2.5million)bytheU.S.populationage85andolderin2010,thelatestavailabledatafromtheU.S.CensusBureau(5.5million)=45percent.Forty-fivepercentisnearlyhalf.

A4.PercentageoftotalAlzheimer’sdiseasecasesbyagegroups: Percentagesforeachagegrouparebasedontheestimated200,000forpeopleunder65,plustheestimatednumbers(inmillions)forpeople65to74(0.3),75to84(2.4),and85+(2.5)basedonlinearextrapolationfrompublishedprevalenceestimatesforeachagegroupfor2010and2020.SeeHebertLE,ScherrPA,BieniasJL,BennettDA,EvansDA.Alzheimer’sdiseaseintheU.S.population:Prevalenceestimatesusingthe2000Census.ArchivesofNeurology2003;60:1119-22.TheseprevalencenumbersarebasedonincidencedatafromtheChicagoHealthandAgingProject(CHAP).

A5.DifferencesbetweenCHAPandADAMSestimatesforAlzheimer’sdiseaseprevalence:TheAging,Demographics,andMemoryStudy(ADAMS)estimatestheprevalenceofAlzheimer’sdiseasetobelowerthandoestheChicagoHealthandAgingProject(CHAP),at2.3millionAmericansage71andolderin2002.SeePlassmanBL,LangaKM,FisherGG,HeeringaSG,WeirDR,OftedalMB,etal.PrevalenceofdementiaintheUnitedStates:TheAging,Demographics,andMemoryStudy.Neuroepidemiology2007;29(12):125-32.AtaconferenceconvenedbytheNationalInstitute on Aging and the Alzheimer’s Association, researchers determinedthatthisdiscrepancywasmainlyduetotwodifferencesindiagnosticcriteria:(1)adiagnosisofdementiainADAMSrequiredimpairmentsindailyfunctioningand(2)peopledeterminedtohavevasculardementiainADAMSwerenotalsocountedashavingAlzheimer’s,eveniftheyexhibitedclinicalsymptomsofAlzheimer’s(seeWilsonRS,WeirDR,LeurgansSE,EvansDA,HebertLE,LangaKM,etal.SourcesofvariabilityinestimatesoftheprevalenceofAlzheimer’sdiseaseintheUnitedStates.Alzheimer’s&Dementia2011;7(1):74-9).BecausethemorestringentthresholdfordementiainADAMSmaymisspeoplewithmildAlzheimer’sdiseaseandbecauseclinical-pathologicstudieshaveshownthatmixeddementiaduetobothAlzheimer’sandvascularpathologyinthebrainisverycommon(seeSchneiderJA,ArvanitakisZ,LeurgansSE,BennettDA.TheneuropathologyofprobableAlzheimer’sdiseaseandmildcognitiveimpairment.AnnalsofNeurology2009;66(2):200-8),theAssociationbelievesthatthelargerCHAPestimatesmaybeamorerelevantestimateoftheburdenofAlzheimer’sdiseaseintheUnitedStates.

End Notes

A6.Numberofwomenandmenage65andolderwithAlzheimer’sdiseaseintheUnitedStates:TheestimatesfornumberofU.S.women(3.3million)andmen(1.8million)age65andolderwithAlzheimer’sin2010wasprovidedtotheAlzheimer’sAssociationbyDenisEvans,M.D.,onJuly21,2010,andfirstpublishedinShriverM.TheShriverReport:AWoman’sNationTakesonAlzheimer’s.Alzheimer’sAssociation;October2010.ThefigureisderivedfromdatafromCHAPpublishedinHebertLE,ScherrPA,BieniasJL,BennettDA,EvansDA.Alzheimer’sdiseaseintheU.S.population:Prevalenceestimatesusingthe2000Census.ArchivesofNeurology2003;60:1119–22.For2012,wetooktheproportionofU.S.womenandmenage65andolderwithAlzheimer’sin2010(65percentand35percent,respectively)andappliedtheseproportionstothenewestimatefortotalnumberofAmericansage65andolderwithAlzheimer’s(5.2million)toobtainthe3.4millionand1.8millionfigures.

A7.NumberofsecondsfordevelopmentofanewcaseofAlzheimer’sdisease:AlthoughAlzheimer’sdoesnotpresentsuddenlylikestrokeorheartattack,therateatwhichnewcasesoccurcanbecomputedinasimilarway.The68secondsnumberiscalculatedbydividingthenumberofsecondsinayear(31,536,000)bythenumberofnewcasesinayear.Hebertetal.(2001)estimatedthattherewouldbe454,000newcasesin2010and491,000newcasesin2020.SeeHebertLE,BeckettLA,ScherrPA,EvansDA.AnnualincidenceofAlzheimerdiseaseintheUnitedStatesprojectedtotheyears2000through2050.AlzheimerDisease&AssociatedDisorders2001;15:169–73.TheAlzheimer’sAssociationcalculatedthattheincidenceofnewcasesin2012wouldbe461,400bymultiplyingthe10-yearchangefrom454,000to491,000(37,000)by0.2(forthenumberofyearsfrom2010to2012dividedbythenumberofyearsfrom2010to2020),addingthatresult(7,400)totheHebertetal.(2001)estimatefor2010(454,000)=461,400.Thenumberofsecondsinayear(31,536,000)dividedby461,400=68.3seconds,roundedto68seconds.Usingthesamemethodofcalculationfor2050,31,536,000dividedby959,000(fromHebertetal.,2001)=32.8seconds,roundedto33seconds.

A8.CriteriaforidentifyingsubjectswithAlzheimer’sdiseaseandotherdementiasintheFraminghamStudy:Standarddiagnosticcriteria(DSM-IVcriteria)wereusedtodiagnosedementiaintheFraminghamStudy,but,inaddition,thesubjectshadtohaveatleast“moderate”dementiaaccordingtotheFraminghamcriteria,whichisequivalenttoascoreof1ormoreontheClinicalDementiaRating(CDR)Scale,andtheyhadtohavesymptomsforsixmonthsormore.Standarddiagnosticcriteria(theNINCDS-ADRDAcriteria)wereusedtodiagnoseAlzheimer’sdisease.TheexaminationfordementiaandAlzheimer’sdiseaseisdescribedindetailinSeshadriS,WolfPA,BeiserA,AuR,McNultyK,WhiteR,etal.LifetimeriskofdementiaandAlzheimer’sdisease:TheimpactofmortalityonriskestimatesintheFraminghamStudy.Neurology1997;49:1498–504.

A9.NumberofbabyboomerswhowilldevelopAlzheimer’sdiseaseandother dementias:ThenumbersforremaininglifetimeriskofAlzheimer’sdiseaseandotherdementiasforbabyboomersweredevelopedbytheAlzheimer’sAssociationbyapplyingthedataprovidedtotheAssociationonremaininglifetimeriskbyAlexaBeiser,Ph.D.;SudhaSeshadri,M.D.;RhodaAu,Ph.D.;andPhilipA.Wolf,M.D.,fromtheDepartmentsofNeurologyandBiostatistics,BostonUniversitySchoolsofMedicineandPublicHealth,toU.S.Censusdataforthenumberofwomenandmenage43to61inNovember2007,usedheretoestimatethenumberofwomenandmenage44to62in2008.

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A10.State-by-stateprevalenceofAlzheimer’sdisease: These state-by-stateprevalencenumbersarebasedonincidencedatafromtheChicagoHealthandAgingProject(CHAP),projectedtoeachstate’spopulation,withadjustmentsforstate-specificgender,yearsofeducation,raceandmortality.SeeHebertLE,ScherrPA,BieniasJL,BennettDA,EvansDA.State-specificprojectionsthrough2025ofAlzheimer’sdiseaseprevalence.Neurology2004;62:1645.

A11.TheprojectednumberofpeoplewithAlzheimer’sdiseasecomesfromtheCHAPstudy:SeeHebertLE,ScherrPA,BieniasJL,BennettDA,EvansDA.Alzheimer’sdiseaseintheU.S.population:Prevalenceestimatesusingthe2000Census.ArchivesofNeurology2003;60:1119-22.Otherprojectionsaresomewhatlower(seeBrookmeyerR,GrayS,KawasC.ProjectionsofAlzheimer’sdiseaseintheUnitedStatesandthepublichealthimpactofdelayingdiseaseonset.AmericanJournalofPublicHealth1998;88(9):1337-42)becausetheyreliedonmoreconservativemethodsforcountingpeoplewhocurrentlyhaveAlzheimer’sdisease.A5Nonetheless,theseestimatesarestatisticallyconsistentwitheachother,andallprojectionssuggestsubstantialgrowthinthenumberofpeoplewithAlzheimer’sdiseaseoverthecomingdecades.

A12.NumberoffamilyandotherunpaidcaregiversofpeoplewithAlzheimer’s and other dementias:Tocalculatethisnumber,theAlzheimer’sAssociationstartedwithdatafromtheBehavioralRiskFactorSurveillanceSystem(BRFSS).In2009,theBRFSSsurveyaskedrespondentsage18andoverwhethertheyhadprovidedanyregularcareorassistanceduringthepastmonthtoafamilymemberorfriendwhohadahealthproblem,long-termillnessordisability.Todeterminethenumberoffamilyandotherunpaidcaregiversnationallyandbystate,weappliedtheproportionofcaregiversnationallyandforeachstatefromthe2009BRFSS(asprovidedbytheCentersforDiseaseControlandPrevention,HealthyAgingProgram,unpublisheddata)tothenumberofpeopleage18andoldernationallyandineachstatefromtheU.S.CensusBureaureportforJuly2011.Availableatwww.census.gov/popest/data.AccessedonJan.5,2012.TocalculatetheproportionoffamilyandotherunpaidcaregiverswhoprovidecareforapersonwithAlzheimer’sorotherdementias,weuseddatafromtheresultsofanationaltelephonesurveyconductedin2009fortheNationalAllianceforCaregiving(NAC)/AARP(NationalAllianceforCaregiving,CaregivingintheU.S.:ExecutiveSummary,November2009.Availableatwww.caregiving.org/data/CaregivingUSAllAgesExecSum.pdf).TheNAC/AARPsurveyaskedrespondentsage18andoverwhethertheywereprovidingunpaidcareforarelativeorfriendage18orolderorhadprovidedsuchcareduringthepast12months.Respondentswhoansweredaffirmativelywerethenaskedaboutthehealthproblemsofthepersonforwhomtheyprovidedcare.Inresponse,26percentofcaregiverssaidthat:(1)Alzheimer’sordementiawasthemainproblemofthepersonforwhomtheyprovidedcare,or(2)thepersonhadAlzheimer’sorothermentalconfusioninadditiontohisorhermainproblem.Weappliedthe26percentfiguretothetotalnumberofcaregiversnationallyandineachstate.

A13.Alzheimer’sAssociation2010WomenandAlzheimer’sPoll: This pollcontacted3,118adultsnationwidebytelephonefromAug.25toSept.3,2010.Telephonenumberswererandomlychoseninseparatesamplesoflandlineandcellphoneexchangesacrossthenation,allowinglistedandunlistednumberstobecontacted,andmultipleattemptsweremadetocontacteachnumber.Withinhouseholds,individualswererandomlyselected.InterviewswereconductedinEnglishandSpanish.Thesurvey“oversampled”African-AmericansandHispanics,selectedfromU.S.Censustractswithhigherthan8percentconcentrationofeachgroup.ItalsoincludedanoversampleofAsian-AmericansusingalistedsampleofAsian-Americanhouseholds.Thecombinedsamplesinclude:2,295white,non-Hispanic;326African-American;309Hispanic;305Asian-American;and135respondentsofanotherrace.Caseswereweightedtoaccountfordifferentialprobabilitiesofselectionandtoaccountforoverlapinthelandlineandcellphonesamplingframes.ThesamplewasadjustedtomatchU.S.Censusdemographicbenchmarksforgender,age,education,race/ethnicity,regionandtelephoneservice.Theresultinginterviewscompriseaprobability-based,nationallyrepresentativesampleofU.S.adults.Thisnationalsurveyincluded202caregiversofpeoplewithAlzheimer’sorotherdementias.Thiswassupplementedwith300interviewsfromalistedsampleofcaregiversofpeoplewithAlzheimer’sforatotalof502caregiverinterviews.Acaregiverwasdefinedasanadultoverage18who,inthepast12months,providedunpaidcaretoarelativeorfriendage50orolderwithAlzheimer’sorotherdementias.Theweightofthecaregiversampleadjustedall502caregivercasestotheweightedestimatesforgenderandrace/ethnicityderivedfromthebasesurveyofcaregivers.QuestionnairedesignandinterviewingwereconductedbyAbtSRBIofNewYork.SusanPinkusofS.H.PinkusResearchandAssociatescoordinatedthepollingandhelpedintheanalysisofthepolldata.

A14.Numberofhoursofunpaidcare:Tocalculatethisnumber,theAlzheimer’sAssociationuseddatafromafollow-upanalysisofresultsfromthe2009NAC/AARPnationaltelephonesurvey(dataprovidedundercontractbyMatthewGreenwaldandAssociates,Nov.11,2009).ThesedatashowthatcaregiversofpeoplewithAlzheimer’sandotherdementiasprovidedanaverageof21.9hoursaweekofcare,or1,139hoursperyear.Wemultipliedthenumberoffamilyandotherunpaidcaregivers(15,248,740)bytheaveragehoursofcareperyear(1,139),whichequals17,365,265,478hoursofcare.

A15.Valueofunpaidcaregiving:Tocalculatethisnumber,theAlzheimer’sAssociationusedthemethodofAmoetal.(seeAmoPS,LevineC,MemmottMM.Theeconomicvalueofinformalcaregiving.HealthAffairs1999;18:182–8).Thismethodusestheaverageofthefederalminimumhourlywage($7.25in2011)andthemeanhourlywageofhomehealthaides($16.99inJuly2011)[seeU.S.DepartmentofLabor,BureauofLaborStatistics.Employment,Hours,andEarningsfromCurrentEmploymentStatisticsSurvey.Series10-CEU6562160008,HomeHealthCareServices(NAICScode6216),AverageHourlyEarnings,July2011.Availableatwww.bls.gov/ces.].Theaverageis$12.12.Wemultipliedthenumberofhoursofunpaidcareby$12.12,whichequals$210,467,017,597.

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A16.HigherhealthcarecostsofAlzheimer’scaregivers:ThisfigureisbasedonamethodologyoriginallydevelopedbyBrentFulton,Ph.D.,forTheShriverReport:AWoman’sNationTakesonAlzheimer’s.Asurveyof17,000employeesofamultinationalfirmbasedintheUnitedStatesestimatedthatcaregivers’healthcarecostswere8percenthigherthannon-caregivers’(AlbertSM,SchulzR.TheMetLifeStudyofWorkingCaregiversandEmployerHealthCareCosts,NewYork,N.Y.:MetLifeMatureMarketInstitute,2010).Todeterminethedollaramountrepresentedbythat8percentfigurenationallyandineachstate,the8percentfigureandtheproportionofcaregiversfromthe2009BehavioralRiskFactorSurveillanceSystemA12wereusedtoweighteachstate’scaregiverandnon-caregiverpercapitapersonalhealthcarespendingin2009,inflatedto2011dollars(CentersforMedicareandMedicaidServices,CenterforStrategicPlanning,HealthExpendituresbyStateofResidence1991-2009.Availableatwww.cms.gov/National HealthExpendData/05_NationalHealthAccountsStateHealth AccountsResidence.asp#TopOfPage.AccessedonDec.30,2011.).Thedollaramountdifferencebetweentheweightedpercapitapersonalhealthcarespendingofcaregiversandnon-caregiversineachstate(reflectingthe8percenthighercostsforcaregivers)producedtheaverageadditionalhealthcarecostsforcaregiversineachstate.Nationally,thistranslatedintoanaverageof$567.Theamountoftheadditionalcostineachstate,whichvariedbystatefromalowof$418inUtahtoahighof$865intheDistrictofColumbia,wasmultipliedbythetotalnumberofunpaidAlzheimer’sanddementiacaregiversinthatstateA12toarriveatthatstate’stotaladditionalhealthcarecostsofAlzheimer’sandotherdementiacaregiversasaresultofbeingacaregiver.Fultonconcludedthatthisis“likelytobeaconservativeestimatebecausecaregivingforpeoplewithAlzheimer’sismorestressfulthancaregivingformostpeoplewhodon’thavethedisease.”(116)

A17.LewinModelonAlzheimer’sanddementiaandcosts: These numberscomefromamodelcreatedfortheAlzheimer’sAssociationbyTheLewinGroup.Themodelestimatestotalpaymentsforcommunity-basedhealthcareservicesusingdatafromtheMedicareCurrentBeneficiarySurvey(MCBS).Themodelwasconstructedbasedon2004MCBSdata;thosedatahavebeenreplacedwiththemorerecent2008MCBSdata.A19NursingfacilitycarecostsinthemodelarebasedonTheLewinGroup’sLong-TermCareFinancingModel.Moreinformationonthemodel,itslong-termprojectionsanditsmethodologyisavailableatwww.alz.org/trajectory.

A18.Allcostestimateswereinflatedtoyear2011dollarsusingtheConsumerPriceIndex(CPI):AllUrbanConsumersseasonallyadjustedaveragepricesformedicalcareservices.Therelevantitemwithinmedicalcareserviceswasusedforeachcostelement(e.g.,themedicalcareservicesitemwithintheCPIwasusedtoinflatetotalhealthcarepayments;thehospitalservicesitemwithintheCPIwasusedtoinflatehospitalpayments;thenursinghomeandadultdayservicesitemwithintheCPIwasusedtoinflatenursinghomepayments).

A19.MedicareCurrentBeneficiarySurveyReport: These data come fromananalysisoffindingsfromthe2008MedicareCurrentBeneficiarySurvey(MCBS).TheanalysiswasconductedfortheAlzheimer’sAssociationbyJulieBynum,M.D.,M.P.H.,DartmouthInstituteforHealthPolicyandClinicalCare,CenterforHealthPolicyResearch.TheMCBS,acontinuoussurveyofanationallyrepresentativesampleofabout16,000Medicarebeneficiaries,islinkedtoMedicarePartBclaims.ThesurveyissupportedbytheU.S.CentersforMedicareandMedicaidServices(CMS).Forcommunity-dwellingsurveyparticipants,MCBSinterviewsareconductedinpersonthreetimesayearwiththeMedicarebeneficiaryoraproxyrespondentifthebeneficiaryisnotabletorespond.Forsurveyparticipantswhoarelivinginanursinghomeoranotherresidentialcarefacility,suchasanassistedlivingresidence,retirementhomeoralong-termcareunitinahospitalormentalhealthfacility,MCBSinterviewsareconductedwithanursewhoisfamiliarwiththesurveyparticipantandhisorhermedicalrecord.DatafromtheMCBSanalysisthatareincludedin2012 Alzheimer’s Disease Facts and FigurespertainonlytoMedicarebeneficiariesage65andolder.ForthisMCBSanalysis,peoplewithdementiaaredefinedas:

•Community-dwellingsurveyparticipantswhoansweredyestotheMCBSquestion,“HasadoctorevertoldyouthatyouhadAlzheimer’sdiseaseordementia?”Proxyresponsestothisquestionwereaccepted.

•SurveyparticipantswhowerelivinginanursinghomeorotherresidentialcarefacilityandhadadiagnosisofAlzheimer’sdiseaseordementiaintheirmedicalrecord.

•SurveyparticipantswhohadatleastoneMedicareclaimwithadiagnosticcodeforAlzheimer’sdiseaseorotherdementiasin2008:TheclaimcouldbeforanyMedicareservice,includinghospital,skillednursingfacility,outpatientmedicalcare,homehealthcare,hospiceorphysicianorotherhealthcareprovidervisit.ThediagnosticcodesusedtoidentifysurveyparticipantswithAlzheimer’sdiseaseandotherdementiasare331.0,331.1,331.11,331.19,331.2,331.7,331.82,290.0,290.1,290.10,290.11,290.12,290.13,290.20,290.21,290.3,290.40,290.41,290.42,290.43,291.2,294.0,294.1,294.10and294.11.

A20.PercentageofAmericansage65orolderwholivealone: The percentageandtotalnumberofAmericansage65orolderwholivealonewerecalculatedfromthecitedtable,whichwascompiledbytheU.S.CensusBureaufromdataobtainedduringtheMarchCurrentPopulationSurveyfortheNation(U.S.CensusBureau.America’sFamiliesandLivingArrangements:2011.TableA2:FamilyStatusandHouseholdRelationshipofPeople15YearsandOver,byMaritalStatus,Age,andSex.Availableatwww.census.gov/population/www/socdemo/hh-fam/cps2011.html).Thetotalwascalculatedbysummingthenumberofhouseholders(ofbothsexesandallmaritalstatuses)wholivedaloneforthethreeagecategoriesof65to74years,75to84years,and85+.Thepercentagewascalculatedbydividingthetotalnumberofhouseholderswholivedalonebythetotalnumberofpeopleinthesameageranges.Dataforthegraphofage-andsex-specificvalueswereobtainedfromthesex-specificsections(allmaritalstatuses)ofthesameCensusBureautable.

A21.MCBSestimatesofthepercentageandnumberofAmericanswholivealone:ParticipantsintheMCBSandthosehavingadiagnosisofdementiawereidentified,anddataabouthealthcareutilizationbytheseindividualswerecollectedin2008.Anyonewhoreportedlivinginafacilitythatprovidesresidentialsupportforanypartoftheyearwasnotconsideredtobelivinginthecommunity.Peoplewholivedinthecommunityfortheentireyearwereaskedhowmanypeoplelivedintheirhousehold,includingthemselves.Thoselivinginthecommunityandlistingonlyonehouseholdmemberwereidentifiedaslivingalone.

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20.LautenschlagerNT,CupplesLA,RaoVS,AuerbachSA,BeckerR,BurkeJ,etal.RiskofdementiaamongrelativesofAlzheim-er’sdiseasepatientsintheMIRAGEStudy:Whatisinstorefortheoldestold?Neurology1996;46(3):641-50.

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TheAlzheimer’sAssociationacknowledgesthe

contributionsofLisaFredman,Ph.D.,BryanD.James,Ph.D.,

TriciaJ.Johnson,Ph.D.,KenP.Scholz,Ph.D.,and

JenniferWeuve,M.P.H.,Sc.D.,inthepreparationof

2012 Alzheimer’s Disease Facts and Figures.

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The Alzheimer’s Association is the world’s leading voluntary health

organization in Alzheimer’s care, support and research. Our mission is

to eliminate Alzheimer’s disease through the advancement of research;

to provide and enhance care and support for all affected; and to reduce

the risk of dementia through the promotion of brain health.

Our vision is a world without Alzheimer’s disease.®

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