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    CaregiverSupportProject:FormativeEvaluationFinalReport Submittedto:MarijaPadjen,ChiefProgramOfficer,AlzheimerSocietyofTorontoApril19,2013A.PaulWilliams,PhD. BalanceofCare(BoC)Research&EvaluationGroupLeadAlliePeckham ResearchAssociateDavidRudoler ResearchAssociateTommyTam ResearchAssociateJillianWatkins ResearchAssociate

  • CaregiverSupportProjectFormativeEvaluationFinalReport,April192013______________________________________________________________________________

    TableofContentsAcknowledgements .......................................................................................................................... iExecutive Summary ........................................................................................................................ ii1.0 Caregiver Support Project (CSP) .............................................................................................. 12.0 Formative Evaluation ................................................................................................................ 2

    2.1 Evaluation Design Considerations ........................................................................................ 22.2 Evaluation Components ........................................................................................................ 3

    2.2.1 Ethics Review and Data Sharing Agreement ................................................................. 32.2.2 Environmental Scan ....................................................................................................... 42.2.3 Secondary Analysis of CSP Administrative Data .......................................................... 42.2.4 Secondary Analysis of TC CCAC RAI-HC and ED Notification Data ......................... 52.2.5 Care Coordinators Debriefing Sessions ........................................................................ 6

    3.0 Findings..................................................................................................................................... 83.1 Context .................................................................................................................................. 83.2 Caregiver Characteristics .................................................................................................... 123.3 Caregivers and Cared-For Older Persons ........................................................................... 133.4 TC CCAC Care Coordinators Debriefing Sessions ........................................................... 20

    3.4.1 First Round Highlights ................................................................................................. 203.4.2 Second Round Themes ................................................................................................ 21

    3.5 CSSA Care Coordinators Debriefing Session ................................................................... 223.6 Caregiver One Minute Evaluations ..................................................................................... 23

    3.6.1 Satisfaction and Stress ................................................................................................. 233.6.2 Most Important Issues for Caregivers .......................................................................... 243.6.3 What Caregivers Said They Need ................................................................................ 253.6.5 Most and Least Liked Aspects of the CSP................................................................... 263.6.6 What Caregivers Would Change ................................................................................. 27

    3.7 Administrative Overhead .................................................................................................... 274.0 Conclusions ............................................................................................................................. 295.0 Recommendations ................................................................................................................... 32

    Appendix A: One-Minute Evaluation Time 1 .......................................................................... 35Appendix B: One-Minute Evaluation Time 2 ........................................................................... 36Appendix C: Briefing Note on Administrative Overhead ........................................................ 37References Cited ....................................................................................................................... 42

  • CaregiverSupportProjectFormativeEvaluationFinalReport,April192013______________________________________________________________________________

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    Acknowledgements TheevaluationteamgratefullyacknowledgesthegeneroussupportoftheAlzheimerSocietyofToronto(AST),theTorontoCentralCommunityCareAccessCentre(TCCCAC),andtheTorontoCentralLocalHealthIntegrationNetwork(TCLHIN),aswellasthesevencommunitysupportagenciesthatjoinedtheCaregiverSupportProject(CSP)in2012.SpecialthanksgotoNatalieWarrick,theProjectCoordinator,andMarijaPadjen,ChiefProgramOfficeratAST,fortheirvaluableadviceandassistancethroughouttheevaluation.ThanksalsotoTomMarincic,Director,BusinessIntelligence,TCCCAC,forhishelpwithTCCCACassessmentdata.WealsowishtothanktheTCCCACandcommunitysupportagencycarecoordinatorswhotooktimeoutofbusyschedulestoprovidetheircrucialinsights.Finally,andperhapsmostimportantly,werecognizethescoresofunpaidcaregiverswhoaddedtheirvoicestotheevaluation.

  • CaregiverSupportProjectFormativeEvaluationFinalReport,April192013______________________________________________________________________________

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    ExecutiveSummary1.0CaregiverSupportProject(CSP)TheCaregiverSupportProject(CSP)isagroundbreakinginitiativeaimedatassistingatriskinformalcaregiversfamily,friendsandneighboursofolderpersonswithhighneeds.Itrespondstoagrowingweightofinternationalevidencepointingtothecrucialrolethatinformal,mostlyunpaid,andmostlyfemalecaregiversplayinmaintainingtheindependence,wellbeingandqualityoflifeofolderpersons,whilemoderatinguseofcostlyandincreasinglystretchedhospitalandinstitutionalresources.TheCSPisledbytheAlzheimerSocietyofToronto(AST)inpartnershipwiththeTorontoCentralCommunityCareAccessCentre(TCCCAC)andsevencommunitysupportserviceagencies(CSSA).ItisfundedbytheTorontoCentralLocalHealthIntegrationNetwork(TCLHIN).UndertheCSP,speciallytrainedhomeandcommunitycare(H&CC)carecoordinators(alsoknownascasemanagers)identifyatriskcaregiversofhighneedsolderpersons.Theyusebudgetsaveraging$1500/caregiver/yeartoengagecaregiversinaprocessofproblemidentificationandproblemsolving,leadingtothecreationofflexiblecarepackagestailoredtoindividualcircumstances,needsandpreferences.2.0FormativeEvaluationInAugust2011,theBalanceofCareResearchandEvaluationGroup(theevaluationteam)wascommissionedbyASTtoevaluatetheCSP.Weframedourevaluationasformativewefocusedongatheringandanalyzingthebestavailablequalitativeandquantitativeevidencetodocumentprojectdesignandimplementation,facilitatecontinuousimprovementastheprojectrolledout,andidentifyoutcomesforfutureevaluation.Toensurethatourevaluationconformedtohighstandardsofethicalresearch,wesoughtandreceivedethicsapprovalfromTheUniversityofTorontoHealthSciencesResearchEthicsBoard(REB)andtheJointBridgepointHealthWestParkHealthcareCentreTorontoCentralCommunityCareAccessCentreTorontoGraceHealthCentreResearchEthicsBoard(JREB).3.0Findings3.1ContextOurenvironmentalscanfound:

    Growingresearchandpolicyinterestininformalcaregiverswhoprovidethebulk(70to90%)ofthecarerequiredbyolderpersonstokeepthemindependent,therebymoderatingdemandforcostlyhospitalandinstitutionalcare

    AgrowingrangeofcaregiversupportinitiativesacrosstheindustrializedcountriesandwithinOntarioincludingrespite,carenavigation,employmentopportunities,extended

  • CaregiverSupportProjectFormativeEvaluationFinalReport,April192013______________________________________________________________________________

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    benefits,unpaidleave,caregiverallowancesandweeklypayments,counselling,informationandreferral

    Littlesystematicevaluationofoutcomesorhardintelligencetoguidethedesignandimplementationofcaregiversupportinitiatives

    StrongalignmentbetweentheCSPandkeypolicyprioritiesanddirectionsincludingOntariosSeniorsStrategyanditsActionPlanforSeniors.

    3.2CaregiverCharacteristicsCSPadministrativedataconfirmedthatcaregiversintheCSPhadmultipleriskfactors.Caregivers:

    Wereoftenolderpersonsthemselves,averaging65.8yearsofage Werepredominatelyfemale(77.1%) OftenspokealanguageotherthanEnglish(29.5%) Oftenselfidentifiedwithminoritycommunities(46.9%) WerejudgedbyTCCCACcaremanagerstobeinfinancialneed(96.5%).

    3.3CaregiversandCaredForOlderPersonsHomecareassessment(RAIHC)dataconfirmedthatcaredforolderpersonsintheCSPhadhighneedsevenincomparisontoolderpersonsintheSeniorsEnhancedCare(SEC)program(themselvesamongthehighestneedclientsoftheTorontoCentralCommunityCareAccessCentre(TCCCAC)).

    AmajorityofCSPclientsspokealanguageotherthanEnglish(57.1%) AboutathirdrecordedveryhighMAPLe(MethodforAssigningPriorityLevels)scores

    (37.1%) Almosttwothirds(60.7%)weredependentonotherstoperformADLs(activitiesofdaily

    living)suchaseating,personalhygiene,locomotion,ortoiletuse Almosttwothirds(61.4%)scoredinthesevereimpairmentrangeoftheCognitive

    PerformanceScale Oneinseven(14.6%)expresseddisruptiveoraggressivebehaviors,andonein15(6.7%)

    werephysicallyabusive.Homecareassessmentdatashowedthat:

    Aboutathirdofcaregivers(29.2%)statedtheywereunabletocontinuecaring Abouttwothirds(65.2%)expressedfeelingsofdistress,angerordepression Seveninten(70.3%)weredistressed.

    Nevertheless,informalcaregiversintheCSP:

    Provided35hoursofcareduringtheweekand15hoursonweekends Werestillwillingtoincreasetheamountoftimetheyspentincaregiving Didnotreceivesignificantlymorehomecarehour

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