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.
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
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.
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
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
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.
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.”
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
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
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
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
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
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.
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
prevAlence
One in eight older Americans has Alzheimer’s disease.
milliOns Of AmericAns hAve Alzheimer’s diseAse And Other dementiAs.
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
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
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+
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
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
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
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
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
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
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%
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
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
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%
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%
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
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
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
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
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
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
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
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)
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*
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
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.
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
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*
• • • •
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)
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)
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
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
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*
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*
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
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)
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
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
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
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
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
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
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
56
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
57
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
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.
59 2012 Alzheimer’s Disease Facts and Figures Appendices
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.
60 Appendices 2012 Alzheimer’s Disease Facts and Figures
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.
61 2012 Alzheimer’s Disease Facts and Figures Appendices
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2012 Alzheimer’s Disease Facts and Figures Appendices 67
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.
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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