EarlyStageProgramming July2012 I.

DescriptionofTopic
History,WisconsinDemographicsandScope Historically,thefocusoftheAlzheimersfieldhascenteredoncarestrategiesforpeopleinthe moderateorlatestagesofthedisease.Overthelastdecade,newinformationhasemerged focusingonthepersonintheearlystagesofdementiaorwithMildCognitiveImpairment (MCI).TheAlzheimersAssociationdefinitionofearlystagedementiais,People,irrespectiveof age,whoarediagnosedandareinthebeginningstagesofthedisease.Inthisstage,theyretain theabilitytoparticipateinagiveandtakedialogue.Thisincludespersonswithyoungeronset thatdevelopdementiaunder65whoarestillintheearlystages. IntheUnitedStates,currentprevalenceratesforAlzheimersdiseaseovertheageof65are estimatedtobeoneineightpeopleor13percent(Hebert,etal.,2000).InWisconsin,thetotal 65+populationin2010was782,810andpopulationprojectionsofthose65+in2020are expectedtobe1,060,620(WIDOAUpdatedPopulationProjectionsforWICountiesbyAge: 20052035;Vintage2008).ForWisconsin,theprevalencerateofAlzheimersdiseasein2010 wasestimatedtobe101,765individualsandisexpectedtoincreasetoapproximately137,881 bytheyear2020,a35%increasecomparedto2010.Estimatesarethatasmanyashalfofthe totalnumberofpeoplewithAlzheimersdiseasearelivingintheearlystagesofthatdisease (VoicesofAlzheimersDisease,TownHallReport,2008). WiththeemphasisonincreasingawarenessaboutAlzheimersanditsearlysigns,alongwith improvementsindiagnostictechnologies,itisexpectedthatthediseasewillbedetectedearlier inthediseasecourse.Overthenextfewdecades,agrowingpopulationofpeoplewith Alzheimersdiseasewillbeidentifiedsoonerandremainintheearlystageslonger.Asthis occurs,theproportionofindividualswithearlystageAlzheimersrelativetothoseinthelater stageswilllikelyincrease.Thischangewilldramaticallyalterthepresentlandscapeofthe disease. Inordertobuildaclearerunderstandingoftheneedsofpeoplewithearlystagedementia,the AlzheimersAssociationconductedanationwidetownhallseriesin2007and2008with facilitateddiscussionsofmorethan300peoplewithdementiaacrossthecountry.Theofficial reportonthisprocess,VoicesofAlzheimersDisease:ASummaryReportoftheNationwide MeetingsforPeoplewithEarlyStageDementia,wasreleasedin2008.Thisreport,andthe townhallprocess,providedamuchneededperspectivenotonlyonthechallengesoflifeinthe earlystagesofdementia,butalsotheneedstomakethisexperiencericher.Therewerefour majorchallengesidentified:Socialstigma;Challengesaroundthediagnosisprocess; Dissatisfyinginteractionswiththemedicalcommunity;Accesstocommunityresources.

SocialStigmaTheoverarchingthemeinfluencingmuchofthediscussionatthetownhall meetingsisthatpeopleintheearlystagesofAlzheimersaremisunderstoodbecauseofmyths andmisconceptionsaboutthediseaseandthatthismisunderstandingleadstoadominant negativestigmaassociatedwithhavingthecondition. ChallengesAroundtheDiagnosisProcessandDissatisfyingInteractionswiththeMedical CommunityPeoplewithearlystageAlzheimersreportsignificantchallengesineffectively navigatingboththediagnosticprocessandthefollowuptreatmentandcare.Theyexpress difficultysecuringavalidandtimelydiagnosis,especiallythosewithyoungeronsetAlzheimers. OnceAlzheimersisidentified,theyseekmorecompleteinformationaboutwhattoexpectand thestepsthatcanbetakentoenhancetheirqualityoflife,bothintermsofavailable medicationsandcommunityresources. UncertaintyaboutAvailabilityofSupportServicesAlackofknowledgeaboutaccessibleand appropriatesupportservicesavailableincommunitieswasrepeatedlyexpressedatthetown hallmeetings.Manyhighlightedtheimportanceofsecuringappropriatesupportandseeking supportgroupsthatwereofferedinvariousmodalitiestoconnecttoothersthathaveashared understandingoftheirexperience.Theyalsodescribetheneedforexpandedandenhanced supportservicestoeducatethemaboutthediseaseandwhattoexpect.Additionally,the importanceofkeepingthemapprisedofnewdevelopmentsinavailableresearchandemerging treatmentstofighttheirdeclinewasalsodiscussed. CurrentActivityandLiteratureSearch Evidenceisaccumulatingthatmodifiablehealthandlifestylefactorsmayplayacriticalrolein moderatingdementiarisk(Barnes&Yaffe,2011;Fratiglionietal.,2004).Thereisalsoa growingrecognitionthatcognitive,physical,andsocialactivitiesmayenhancequalityoflifefor personscurrentlylivingwithdementia(Olazarnetal.,2010).Asaresult,psychosocial interventionstosustaincognitivehealthinolderadultsandtoimprovewellbeingofpersons withdementiaarebeingdevelopedandimplementedinmorewidespreadwaysthanever before(HartmanStein&LaRue,2011). Interveningatearlystagesofdementiaoffersthebestopportunitytoaffectdiseasecourseina positiveway.PersonswithMildCognitiveImpairment(MCI)orearlystagedementiaareoften awareoftheircognitivechanges,andmanyaremotivatedtodowhatevertheycantopreserve theirskillsandindependence.Althoughlargerscaleandbettercontrolledstudiesareneeded (Sitzeretal.,2006),availabledatasuggestthatwelldesignedinterventionscanimpact cognition,communicationskills,mood,andoverallwellbeingforpersonswithMCIorearly stagedementia(Olazarnetal.,2010;Valenzuela&Sachdev,2009;Woodsetal,2012). Caregiverscanalsobenefitfromtheirlovedonesinvolvementinactivitybasedprogramsas theyprovidethemtheopportunitytolearnanddevelopstrategiestohelpthepersonwith memorylossbuildonstrengthsandpreservewellbeing(Terietal.,2008;Olazarnetal., 2010).

Amongcognitivelyhealthyelderly,amultisitecontrolledtrialofacognitivetraining intervention(Balletal.,2002)hasdemonstratedthatgainsincognitiveskillsresultingfroma fewsmallgrouptrainingsessionsareretainedtoadegreeforatleast5years(Willisetal., 2006),andthatimportantaspectsofeverydayfunction(e.g.,healthqualityoflife)areimpacted inasustainedway(Wolinsky et al., 2006).Otherinterventionstudieswithcognitivelyhealthy elderlyhaveshownatleastshorttermcognitive,health,orwellbeingbenefitsfromphysical exerciseprograms(Vossetal.,2011),volunteerengagement(Carlsonetal.,2009),videoor webbasedtrainingprograms(Smithetal.,2009),andmultimodalinterventionsthatcombine cognitive,social,and/orphysicalactivityinvariousways(HartmanStein&LaRue,2011; Olazarnetal.,2010). SimilarinterventionapproacheshavebeenimplementedwitholderpersonswithMCIand/or earlyAD.Nationallyandinternationally,promisingexamplesofearlystagedementia programminginclude: Memorytraininginsmallgroups,usingproceduressuchasspacedretrievalto augmentthelearningprocess(e.g.,Bellevilleetal.,2006); Computerizedcognitiveexercisesdesignedtopreserveorincreasecognitive plasticity(Barnesetal.,2009); Artsengagementprogramsthatincreaseengagementofolderpersonswith dementiaintheater,dance,creativewriting,storytelling,andvisualarts(Cohenet al.,2006); Exerciseinterventionsdesignedtoincreaseeverydayphysicalactivity (Lautenschlageretal.,2008;Terietal.,2008); Multimodalprogramsthatcombinecognitive,creative,andsocialactivities,withor withoutaddedphysicalactivity(Olazarnetal.,2004). InWisconsin,earlystagedementiainterventioneffortshavebeenadvancedthrougha collaborativenetworkofcommunitybasedcareprovidersandresearcherswhosharean interestinhelpingpeoplewithMCIearlystagedementia.AseriesofEarlyStageSummit meetings,ongoingfromApril,2009tothepresent,hasresultedinadraftBestPracticesGuide whichprovidesrecommendationsforthedesignandimplementationofmultimodalearly stageprogrammingincommunitysettings.Informedbyresearchonearlystageinterventions byinvestigatorsatUWMadison(LaRue,2011)andUWMilwaukee(Fritschetal.,2011),andby theexperienceofcareproviders,WisconsinbasedAlzheimerssupportorganizations(e.g.,the AlzheimersAssociation,SoutheasternWisconsinandGreaterWisconsinchapters,andthe AlzheimersandDementiaAllianceofWisconsin),andthestateDepartmentofHealthServices, thebestpracticesrecommendationswereintendedtospeedtheprocessofdevelopingand implementingearlystagesupportprogramsthroughoutthestate.Manyofthese recommendationshavebeenincorporatedinSectionIIIofthisreport. Muchremainstobedone,inresearchandinprogramplanning,implementation,and evaluation.Manypromisinginterventionslackhighqualityoutcomeassessments,sotheir efficacyandcosteffectivenessremaintobedetermined,mostcriticallywithregardtolong

termimpactsondiseaseprogressionandcareneeds.Inaddition,althoughWisconsinhasbeen aleaderinimplementingearlystagedementiaprogramming,mostcommunitiesinourstate lackaccesstosuchprograms,andasustainededucationeffortwillbeneededtoraise awarenessofconsumers,healthcareproviders,andagingandsocialservicespersonnelabout thebenefitsofearlystagedementiainterventions.Andimportantly,thechallengesofadapting programmingtomeettheneedsofurban/ruralandracial/ethnicdiversityhaveonlybegunto beexamined.

II.ProblemStatement
GapsandunmetneedsforearlystagediagnosisandpsychosocialsupportservicesinWisconsin havebeenidentifiedindiscussionswithearlystagestakeholders,personswithadiagnosisand theirfamilymembers.Basedontheseinteractions,twodistinctareasofgapsandunmetneeds duringorafterdiagnosiswereidentifiedas: 1. Dissatisfyinginteractionswiththemedicalcommunity 2. Lackofpsychosocialsupportsandproblemsinaccessingexistingsupports Dissatisfyinginteractionswiththemedicalcommunity Physicianslackknowledgeondementiaandhowtodiagnose. Physiciansarenottellingthepatientsorfamilycaregiversofthedementiadiagnosis. Lackofphysicianswithknowledgeaboutservicesoreducationalopportunities. Lackofpsychosocialsupportandconnectiontoimportantresourcesatthetimeof diagnosis. Thegeneralmedicalcommunitylackstheunderstandingofthevalueandimportance ofwellnessprogramsandmeaningfulactivityastherapeuticinterventionswhichneed tobeemphasizedandprescribedorrecommended. Alackofemphasisonincludingatrustedconfidantealongwiththepatientinthe diagnosticand/orongoingtreatmentprocesstoenhanceearlystageprogram interventions. Lackofpsychosocialsupportsandproblemsinaccessingexistingsupportiveservices Socialservicestaffatalllevelslackofknowledgeandpurposeofexistingearly memoryloss(EML)programsandotherearlystagesupportiveservices. Existingsupportgroupsforpersonswithdementianotreadilyavailableoravailable throughtheentirestate(ruralvsurban). Timeofdayofsupportgrouporeducationprogrammaynotwork,especiallyif primarycarepartnersworkfulltimeandcannottransportthepersonwithdementiato programs/socialsupports. Lackofeducationprogramsforpersonswithdementiaandcarepartners. Primarycarepartnersaretakingcareofchildrenand/orotherparents. Familyorcarepartnerdenialaboutdiagnosisandlackofunderstandingaboutthe benefitofearlystageprograms.

Lackofopportunitiestobringtogetherindividualswithearlystagedementiaforsocial interactionandpeerdevelopment/support. Lackofearlystageprograms/supportservicesdeliveredinthehome.Whatifthe personisnotableorwillingtogotoaprogram/supportserviceinthecommunity? LackofawarenessofAlzheimersdiseaseandotherformsofdementiainculturally diversecommunities;alsoleadstodelaysindiagnosis. Lackofculturallyappropriateprogramsinculturallydiversecommunities. Lackofprogramsandservicestailoredforthosewithyoungeronsetdementia (youngerthantheageof65atdiagnosis;commonlyin40sand50s). Lackofprogramstailoredforthosewithdifferentformsofdementia,(i.e., frontotemporallobardegenerationFTD,PPA,etc.) Lackoflegalandfinancialplanningattheearliestpointsinthediseaseprocess. Inadditiontoexistinggapsandneedsforservices,therearemanyidentifiedsystemicissues withintheStateofWisconsinhealthandhumanserviceandtransportationprograms. SystemicIssues Lackoftransportationprogramsthroughoutstate.Distancetoprograms/servicesisan issuepeoplemaynotwanttodrivemorethan10milesforserviceswhichcanbean additionalissueforrural/remotecommunities. LackofEMLinterventionprogramsinvestmentoftimeinvolved,cost,logistics,etc., forprovider;nofinancialgainforprovider. FinancialassistancetopayforexistingEMLprograms. Feefortheprograms;notcoveredbyprogramslikeFamilyCareorVeteransbenefits sofamiliesareforcedtopayprivatelyfortheservices. VariabilitywithincountyADRCsinidentifyingandaddressingpsychosocialneedsof earlystageindividuals,theircarepartners,familymembers,andinformalsupports. Thereisapronouncedneedforimprovingexistingsupportservices,expandingtheseservices andincreasingaccessibilitytotheseservices.IfnothingchangesinthestateofWisconsinasit pertainstoearlystageservices,weanticipatesomeofthefollowing,butnotlimitedto, detrimentalissues:increasesinexcessdisability,mismanagementofmedicationsandother chronichealthconditionslikediabetesorheartdisease,increasedratesofhospitalization, earlierplacementinlongtermcarefacilities,increasedcaregiverburnout,anddecreased potentialforearlieridentificationofcoexistingmentalhealthissueslikedepression.

III.IdentifyingResources
ExistingBestPracticeModels AnoutcomeoftheEarlyStageSummitmeetingsinWisconsinhasbeentheproductionofa draftBestPracticesGuidetoprovidestandardizationsforEarlyMemoryLoss(EML)Programs. AnEMLProgramfocusesonmemoryenhancementforthosewithmildmemorylossorearly stagedementiawiththeintenttopromoteandprolongindependence.Theseprogramsare

specificallydesignedtopreserveandchallengecognitiveabilities,teachmemorystrategiesand encourageactivelifestyles.Theprogramgoalsincludebuildingselfconfidence,providing personalsupport,fosteringindependence,encouragingmentalandphysicalfitnessoutsideof theclass,andpromotingphysicianevaluationand/ormemoryclinicassessmentandfollowup. AsstatedintheBestPracticeGuide,EMLprogramsincorporatethefollowingpillarsascore componentsintheoverallprogram: Cognitiveandmentalfitnessexercises Educationrelatedtomemoryandbrainfunction Socialinteractionwithpeersthatencouragesparticipantinput Incorporatephysicalactivityand/oreducationonthebenefitsofphysicalactivityand nutrition Opportunitiestolearnmemoryenhancementtechniquesandstrategiestolivewith memoryloss Accesstoinformationaboutlocalresourcesandsupportservicesforindividualsliving withmemorylossandtheirfamilies Emphasisonlaughterandhumor Camaraderieandsupportfrompeerslivingwithmemoryloss Opportunityforcreativity Encouragementtoparticipateincivicengagementandcommunitylife. Identificationofbestpracticesinearlystageprogrammingandsupportsissomewhatscarceas emphasisonearlystageprogramsandknowledgeaboutthebenefitsisrelativelynewandthis isanareaofresearchthatisgrowing.Therearethreeserviceareasthatareimportant componentsfortheinitialandongoingsupportofindividualswithearlystagedementia: 1. Information,educationandplanning:Thisincludesinformationand assistance/referral,educationprograms,casemanagement,homesafety assessments,legalandfinancialplanning,andemployeeassistance/disability assistance. 2. Healthandpsychosocialsupports:Thisincludeswellnessprogramsthatincorporate cognitivehabilitation,exerciseand/ornutrition,individualand/orfamilycounseling, andgrouptherapy/supportgroups. 3. Socializationandmeaningfulengagement:Thisincludesearlydementiaday programs,buddy/matchingprograms,outingsorgroupactivityprograms,volunteer andreturntoworkprograms,advocacyopportunities,creativearts,socialclubs,and online/chatcommunities. InWisconsin,therearemanyresources(nonfinancialandfinancial)toconsiderinhelpingto developasolidinfrastructureandassistwiththeexpansionofearlystagesupportservicesand awareness: UntappedNonfinancialResources

BuildcapacitywithinSeniorCenterstaffandprogramstohelpthemadaptand accommodatethosewithearlystagedementia(dementiainformedanddementia capable). EnsureADRCsaredementiainformedanddementiacapable. WorkwithYMCAandotherfitnesscenterstoprovidestructuredprogramsthatare dementiainformedanddementiacapable. Workwithvolunteerprogramsandserviceclubstoprovidesocialnetworking,social engagementandcivicengagementthatarestructuredforthosewithearlystage dementia. WorkwithCooperativeExtensionprogramstoprovideenhancededucation programming/supportforthoseintheearlystagesofdementia(dementiainformedand dementiacapable). Ensureexistingcounselingprogramsandservicesaredementiainformedand dementiacapable. Fostertheearlyexpansionandmobilizationoftheindividualsinformalsupport networkthroughsuchprogramsasSharetheCare. Empowerthepersonwithdementiaandhis/hertrustedconfidantetobeassertive advocatesbycontinuingtoutilizeexistingactivitygroups/clubsandalsoteachingthe existinggroups/clubswaystheycanbemoreeffectiveinthesupporttheyprovide. Utilizetheservicebankidea. Provideoptionsforcarepartnersoranotherfriendtovolunteeratanearlystage programinexchangeforfreeparticipanttime. Encourageearlystageindividualsandtheircarepartners/supportivepartnerstohelp eachotheroutinwaystheyareablei.e.,matchpeopleup,rideshares,etc. Encourageretireestobetrainedasvolunteerstorunandstaffsomeoftheprograms. Advocateforbuildingcommunityandfosteringinterdependenceasastrengthbased communitystrategy. ImplementanautomaticreminderonElectronicMedicalRecordsrequiringphysicians officestoprovidereferralofdiagnosedpatientstotheAlzheimersAssociationupon diagnosisofAlzheimersdiseaseorrelateddementias.

FinancialResourcestoExplore Advocatetothemedicalcommunityaboutearlystageprogramsastherapeutic interventionsandadvocatehavingthemincludedasreimbursableservicesthrough MedicareandMedicaid. ExpandRSVPandotherdriverescortprogramstoincludetransportationtoandfrom earlystageprograms. AdvocatethatearlystageprogramsbeincludedasapayableunderLongTermCare insuranceprogramdefinitions.

IV.RoadmapforStatewideImplementation

Maximizingcurrentstructuresandresources TheStateofWisconsinhasanadvantageoverotherstatesinbeginningtoaddresstheneedsof personswithearlystagedementia:thenetworkofAgingandDisabilityResourceCenters (ADRCs)thatexistineveryCounty.TheADRCshavethepotentialtoconnectpeopleto availableresources,toensurethatpeoplewhoareeligibleforfinancialandhealthresources suchasSSIandMedicaidareenrolledintheseprograms,and,viaFamilyCareandOlderAdult programsandfundingsources,theycanarrangeforthepaymentforsomeneededservices. However,ADRCsmustbecomemoredementiainformedanddementiacapablethantheyare now. Anotherexistingresourceisthedementiacarenetworksthathavebeenestablishedinmany counties.Thesenetworksofprovidersandlocalcountyprogramstaffareexcellentconduitsfor thedisseminationofknowledgeandawarenessraising,andpotentiallyaresourceofservice provisionaswell. Inaddition,thepioneerearlystageprogramshavedoneanexceptionaljoboflearningfrom eachotherandsharingresources,withtheassistanceoftheHelenBaderFoundation,viathe EarlyStageSummitsasdescribedinotherpartsofthissection. Finally,theWisconsinAlzheimersInstitutestatewidenetworkofdiagnosticclinicscannotonly helppeoplegettheearliestandbestdiagnosis,buttheycanserveasasystemtoeducateother physiciansabouttheimportanceofearlydiagnosisandtreatment. Whatneedstobedeveloped?Whatchangesarerequired? ManyexamplesofneededchangescanbefoundaboveintheareatitledUntappedResources. Additionalbroadchangesincludethefollowing. Manypeoplewithearlystagedementiawillfallbetweenthecracksofexistingservice deliverysystems,especiallyintwoscenarios.Thefirstiswhenthepersonisundertheageof 60andisreferredfordisabilityservices,butwillbeseentohaveanagingissue,andthe secondwillbeifthepersonpresentswiththebehavioralandpsychiatricsymptomsof Alzheimersandisreferredtoexistingmentalhealthprograms.Ineitherscenario,itisunlikely thepersonwillbeconnectedtoservicestheyneedinanappropriateandtimelymanner.To addressthesestructuralconcerns,countyaging,disabilityandmentalhealthstaffwillneedto workincloseralignmentwitheachotherandwillalsoneedtointerfaceeffectivelywithfamilies andreferralagencies. Wewillalsoneedtodevelopadditionaleducational,health,andsupportprogramsforpeople withearlystagedementiaandmakethesesupportspartofourexistingarrayofservicesina moreintentionalmannerthannow.Sofartheseprogramshavebeendevelopedasmodels orpilotsandarenotseentobeascentraltoservicedeliveryas,say,homedeliveredmealsor personalcare.Theremustalsobedevelopedpublicfundingmechanismssoindividualswith limitedmeanscanaccessservicesattheleastpossiblecost.

Inregardtotheproblemswithphysiciansandthemedicalcommunityasdocumentedearlier, morephysicianeducationandoutreachmustbedone,andbettercurriculaestablishedfor medicalschools.Thisisprimarilythetopicofanotherworkgroup. Anotherlargeareaofsocialchangehastodowithcontinuedeffortstoreducethestigmaof Alzheimersdiseasesothatindividualsandfamiliesfeelmorecomfortableincomingforwardto obtainadiagnosisandthecaretheyneed.Anotherworkgroupisaddressingthisverycentral component. Cost/benefitanalysis Thebenefittohumanservicedeliverysystemsofearlystageservicesisclear.Theindividualis identifiedearlyinthediseaseprocessandthecaregiverisprovidedtoolsandsupportto maintainthepersoninthehomeenvironment,therebydelayingtheneedformoreexpensive institutionalcare.Studies(Sager,et.al.)havedescribedindetailthesavingstohumanservice systemsofdelayingnursinghomeplacementofthepersonwithAlzheimersdisease. Thebenefittoindividualsandfamiliesisalsoconsiderable.Manyearlystageprograms emphasizetheimportanceofobtainingathoroughdiagnosisandhaveassistedparticipantsin navigatingcomplexhealthandsocialservicesystems.Theemotionalsupportthatisavailable throughtheseprograms,notjustforthepersonwiththediagnosisbutalsoforthecaregiver andfamily,canleadtobettermentalhealthoutcomesforeveryone.Andthesocial engagementactivitiesavoidtheproblems(suchasdepressions)thatareassociatedwithsocial isolation. WhattheFinalPictureLooksLike Weevolveintoasocietywhereitissociallyacceptableandnotstigmatizingtostepforwardand obtainadiagnosisforAlzheimersdiseaseanddementiaattheearlieststagepossible,muchas onenowapproachesthemedicalandhealthcaresystemsforotherhealthcarediagnoses.And atthepointofinteractingwiththehealthcaresystem,theindividualobtainsathorough diagnosisandthebestavailabletreatment,andthepersonandcaregiversareconnectedtoa seamlesssystemofservicesandsupportsthatmeettheirneedsforinformation,healthand emotionalsupport,andsocialengagementandmeaningfulactivity.

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