kate swaffer cv 1 july 2017 · 7/6/2017 · 2014 my theory of prescribed disengagement® received...

KateSwaffer

CurriculumVitae

June2017

KateSwaffer:CurriculumVitaePOBox202Burnside5066|http://kateswaffer.com|http://www.infodai.org

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About Kate Swaffer: Kate is the 2017 SA Australian Of The Year. She received the University ofWollongong’sAlumniSocialImpactAwardforherglobalworkindementiain2016,andwasamongsttheWestpac/Financial Review100Womenof Influence announced for 2016.Amongst a numberof otherprestigiousawards,shewasalsothe InauguralwinneroftheStirlingUniversity InternationalDementiaLeader in 2015, and an Emerging Leader in Disability Awareness in the National Australian DisabilityAwardsin2015.ShewasalsoinvitedtogivetheAAGSirKeithWilsonOrationinJune2017.Kate is theonlyAustralianwho isa fullmemberoftheWorldDementiaCouncil,aboardmemberandtheSEAsiaRegionalAmbassadorforAlzheimer’sDiseaseInternational;sheisChair,CEOandco-founderofDementiaAllianceInternational,aglobaladvocacyandsupportgroupforpeoplelivingwithdementia.Kate isacurrentPhDstudentandanHonoraryAssociateFellowwith theFacultyofScience,Medicineand Health, University of Wollongong, and an International Fellow at Canterbury Christ ChurchUniversity.ShecompletedaMastersofScienceinDementiaCarewithaDistinctionin2014,Sheisalsoaretiredchefandnurse,havingworkedindementiaandagedcare,andthenoperatingtheatres.Notably, inherhuman rightswork, she is the first person livingwith adiagnosis of dementia tohavebeen an invited keynote speaker at the World Health Organisation (WHO, at the First MinisterialConferenceonDementiainMarch2015,whereshedemandedhumanrights,accesstotheConventionontheRightsofPersonswithDisabilities(CRPD)forallpeoplewithdementiaandabalanceinresearchbetween care and cure on the global stage. These demandswere included in theWHO Final Call ToAction,andhuman rightswere included in theGlobalActionPlan forDementiaadoptedat theWorldHealthAssemblyinMay2017.Kateisahumanitarian,activistforhumanrightsforagedanddementiacare,andhasalwaysstoodupforsocialjusticeeitherasanadvocateorinvolunteeringroles.ShestillvolunteersforthehomelessinSouthAustralia,andtheBereavedThroughSuicideSupportGroup(SA)Incorporated.She is also awidelypublishedacademic, author andpoet.Her first bookondementia,WhatTheHellHappened to My Brain?: Living Beyond Dementia, and her second dementia book Diagnosed withAlzheimer’s or another dementia, co-authoredwith Associate Professor Lee-Fay Lowwere released in2016. Her first two volumes of poetry were published in 2012 and 2016, and her third volume iscurrentlyinpress.Hernexttwobooksondementia,oneonpositivelysupportingpeoplediagnosedwithdementia,andtheotheronhumanrights,arebothplannedtobereleasedin2018.Since2010,KateSwafferhasbeenactivelyworkingwithafocusonhumanrightsandaccesstotheCRPDforpeoplewithdementia,andhasgivenmorethan800invitedkeynotepresentationsonanumberoftopics, not only in the field of dementia and human rights, but on topics including disability,discrimination,stigma,thelivedexperienceofdementia,dementia-enablingdesignprinciples,language,Dementia Friendly Communities, PrescribedDisengagement®, Information Technology for peoplewithdementia, advocacy, dementia policy (local, national and global) and loss and grief. There has been adistincttransformationinherworkfromadvocacytoactivism,inAustraliaandontheglobalstageforallpeoplewithdisabilities, and specifically disabilities causedby adiagnosisof adementia, and shenowveryactivelysupportstheDignityPartySA.Katealsoworkedasamotivationalspeakerfrom1992-1996,withGrahamWrightandAssociates,aspartoftheSuccessMotivationInstitute(nowLeadershipManagementAustralia).


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CURRENTPROFESSIONALACTIVITIES→ DementiaAllianceInternational,Co-founder,ChairandCEO→ InternationalspeakerwithSaxtons→ Humanitarianandactivistforagedanddementiacare→ HumanRightsActivist→ Publishedauthor,academicandpoet→ Member,WorldDementiaCouncil→ Alzheimer’sDiseaseInternational,Boardmember→ Alzheimer’sDiseaseInternational,SEAsiaRegionalAmbassador→ Alzheimer’sDiseaseInternational,ScientificPanel→ Consultant,DementiaCare→ PhDCandidate,UniversityofWollongong→ HonoraryAssociateFellowwiththeFacultyofScience,MedicineandHealth,Universityof

Wollongong→ InternationalFellow,CanterburyChristChurchUniversity→ GlobalActiononPersonhoodGAPinDementia,corememberoftheGlobalgroup,andChairofthe

Australianchaptersince2016→ SouthernDementiaAdvisoryGroup,Honorarymember(Kiama,NSW)→ Member,Alzheimer’sAustraliaDementiaAdvisoryCommittee→ Member,DignityDisabilitySAEDUCATION2016 PhDCandidate,UniversityofWollongong(2017:LeaveofAbsenceduetoothercommitments)2014 MastersofScienceinDementiaCare(Distinction),UniversityofWollongong2010 BachelorofPsychology,UniSA2009 BachelorofArts,WritingandCreativeCommunication,UniSA2005 CertificateofSmallBusinessManagement,BusinessSA1989 GraduateDiplomainGriefCounseling,UniversityofBallarat1987 Chefdiploma:“AustralianCuisine”,RegencyParkTAFE1975-77 Nursetraining,WhyallaandCleveHospitals,SACURRENTRESEARCHPROJECTSKateiscurrentlystudyingforherPhDbasedusingautoethnographytoreviewthelivedexperienceofdementia,attheUniversityofWollongong.ThefocusisofherPhDisstigmaandthepublicdiscourseofdementia.Herotherresearchprojectsincludeprojectsondementiaenablinguniversitiesandenvironments,rehabilitationandPrescribedDisengagement®,legalcapacityofpeoplewithcognitivedisabilities,anddementiacareintheLowandMiddleIncomeCountries.


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HONORSANDAWARDS2017 AustralianGerontologyAssociation(AAG)SA,TheSirKeithWilsonOration2017 AustralianofTheYearAward,SouthAustralianWinner2016 UniversityofWollongong,AlumniAwardSocialImpactAward,Winner2016 AustralianofTheYearAward,SouthAustralianFinalist2015 NationalDisabilityAwards:EmergingLeaderinDisabilityAwareness,Winner2015 DementiaLeader,UniversityofStirlingInternationalDementiaAwards,Winner2015 DignityinCareAchievementAward,OutstandingIndividualContributiontoDignityin

Care,Inauguralwinner2015 BethanieEducationMedallionAward,Winner2015 UniversityofWollongong,AAGCommunityEngagementAward,Winner2015 UniversityofWollongong,CommunityEngagementAward,Winner2015 UniversityofWollongong,AlumniAwardSocialImpactCategory,Runnerup2014 UniversityofWollongong,Master’sofScienceinDementiaCare,Distinction2012 Creatinglifewithwords:Love,InspirationandTruthwasarchivedinthePANDORA

CollectionoftheState(SA)andNationalLibraryofAustralia2012-13 PatronforTheVisitors,aplayaboutYoungerOnsetDementia,UrbanMythTheatre

GroupandECHResidentialAgedCare2008 BachelorofPsychologyUniversityMeritAward,UniSA; LifetimeGoldenKeyMembership,UniSATRADEMARKS2014 MytheoryofPrescribedDisengagement®receivedRegisteredTrademarkstatusafter

meetingthestringentTrademarkstatuscriteriaintwomedicalcategoriesSELECTEDPUBLICATIONSSwaffer,K(2016).Co-productionandengagementofpeoplewithdementia:Theissueofethicsandcreativeorintellectualcopyright,Dementia,Vol.15(6)1319–1325.

Swaffer,K(2016).Thehumanrightsofpeoplewithdementia:fromrhetorictoreality,GraphicPrint:RichmondSA.(PositionpaperproducedforDementiaAllianceInternational)

Swaffer,K.(2016)Whatpeoplewithdementiawantfromresidentialcarehomes,AustralianJournalofDementiaCare,vol.5,no3,pp.21-23.Phillipson,L.Cridland,E,Swaffer,K.andBrennan-Horley,C.(2016).QualitativeResearchInvolvingPeoplewithDementia:RecommendationsforConductingSemi-StructuredInterviews,QualitativeHealthResearch.


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Fleming,R.Phillipson,L&Swaffer,K.(2016).DTSC’saimtocreateAustralia’sfirstdementiaenablinguniversity,AustralianJournalofDementiaCare,pp.5-7.

Swaffer,K2015,PrescribedDisengagement™,Dementia,Vol.14,pp.3-6.Swaffer,K2014,Dementia:Stigma,LanguageandDementia-friendly,Dementia,Vol.13(6)709–716,DOI:10.1177/1471301214548143.Swaffer,K2015,Notjusta“Challengingbehaviour”,AustralianJournalofDementiaCare,vol.4,no3,pp.21-23.Swaffer,K2015,Thepoweroflanguage,AustralianJournalofDementiaCare,vol.4,no1,pp.21-24.Swaffer,K2014/2015,Reinvestinginalifeisthebestprescription,AustralianJournalofDementiaCare,vol.3,no6,pp.31-32.Swaffer,K2014,Humanrightsinresidentialagedcare:Aconsumer’sperspective,AustralianJournalofDementiaCare,vol.3,no1,pp.9-10.Swaffer,K2013/14,IntroducingtheAustralianDementiaAdvisoryCommittee,AustralianJournalofDementiaCare,vol.2,no6,pp.13-14.Swaffer,K2013,Drivinganddementia,AustralianJournalofDementiaCare,vol.2,no4,pp.17-18.Fleming,R,Phillipson,L,Swaffer,K&Steele,L.(2016).Submission19:Inquiryintothe'IndefinitedetentionofpeoplewithcognitiveandpsychiatricimpairmentinAustralia'.

Swaffer,K,2012,Dementia:thereality,InquiryintoDementiaEarlydiagnosisandIntervention,Submissionno71.

Swaffer,K2011,MyUnseenDisappearingWorld,TheBigIssue,no389,pp.16-19.Swaffer,K2008,Dementia:MyNewWorld,LINKDisabilityMagazine,vol.17,no4,pp.12-13.BOOKSSwaffer,K&Low,LF.(2016)."DiagnosedwithAlzheimer’soranotherdementia:Apracticalguideforwhat'snextforpeoplewithdementia,theirfamiliesandcarepartners",NewHollandPublishers:Sydney.Swaffer,K.(2016)."LoveLifeLoss,Arollercoasterofpoetryvolume3:HaikuMania",GinninderraPress,[InPress].Swaffer,K(2016)."Whatthehellhappenedtomybrain?:Livingbeyonddementia",JessicaKingsleyPublishers:London.


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Swaffer,K2012,Chpt7,‘YouLiveUntilYouDie’inWillis,P&Leeson,K(eds),LearningLifefromIllnessStories,PostPressed,MtGravatt,Qld,pp.90-101.Swaffer,K.(2016)."LoveLifeLoss,Arollercoasterofpoetryvolume2:Daysofdementia":,GinninderraPress.Swaffer,K2012,LoveLifeLoss,Aroller-coasterofpoetry,GraphicPrintGroup,Richmond,SA.Swaffer,K2010,‘Kate’inWordsThatShine,PoetryandPoeticsCentre,UniversityofSA,Magill,pp.11-16.Swaffer,K2009,‘SlippingAway’inShort,Cetal(eds),Stratosphere,PipingShrike,UniversityofSA,Magill,p85.PASTPROFESSIONALANDVOLUNTEERACTIVITIES(2007-2017)→ AustralianAgedCareQualityAgency(2016-2017)

o SteeringCommittee→ DignityinCareAustralia:Actiongroup,MemberandChampion

o Conferencesubcommitteeo Educationsubcommittee

→ CognitiveDeclinePartnershipCentre,SteeringCommitteemember,2015-2016→ PaidConsultant,Alzheimer’sAustralia,DementiaFriendlyCommunities,2014-15→ InternationalConsortiumforHealthOutcomesMeasurement(ICHOM)DementiaWorkingGroup,

coremember,2014-15→ SupportingGP’sandPracticeNursesinthetimelydiagnosisofdementiaProject,SteeringCommittee

member,2015-2017→ NationalDementiainHospitalsprogram,Advisorycommitteemember,2015-2017→ ConsumeradvocatewithAlzheimer’sAustralia(Nationaloffice)2010-current

o InauguralChair,DementiaAdvisoryCommittee(AADAC)o Co-chair,ConsumerDementiaResearchNetwork(CDRN)2010-2016

CDRNsubgroupsandprojects:! ChildrenofYOD! Assistedtechnologiesproject,AssociateInvestigator! TRACSproject,consumerrepresentative! Hydrationproject! Thekeyworkerroleofpeoplewithdementiaandtheircarers! Systematicreviewandscopingstudyfortheimplementationofanational

approachtodementiaspecificAdvanceCarePlanning! Reviewinternationaldementiaguidelinesandsynthesisetodevelopnational

Australianguidelines


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→ ConsumeradvocatewithAlzheimer’sAustraliaSouthAustralia(AASA)o YODreferencegroupo AASAConsumersAllianceo DementiaFriendlyCommunitiesWorkingGroup

→ ConsumerRepresentativewithHealthConsumersAllianceSAo OlderPersonsClinicalNetwork(2012-15-thiscommitteenolongerexistsnSA)o DementiaFrameworksteeringgroupo AdvancedCareDirectivescommittee

→ Authorandmanagerofthreepersonalwebsites,CreatingLifewithWords:Inspiration,Loveandtruth,LivingBeyondDementia,IntheKitchenandtheDementiaAllianceInternationalwebsite.

KateSwafferspersonalwebsiteCreatingLifewithWords:Inspiration,Loveandtruthisanonlinespacecommittedtomeaningfuldialoguewithawiderangeofstakeholdersaboutthecriticalissuesimpactingapersonlivingwithadiagnosisofdementiaandtheirlovedones.Ithasacurrentreadershipof65,000+permonth,andin2012wasarchivedinthePANDORACollectionoftheState(SA)andNationalLibraryofAustralia.Thiswebsiteiscurrentlylistedinthefollowingeducationalinstitutionsandorganisationsasaresource:

o UniversityofWollongong,Master’sofScienceinDementiaCareo QueenMargaretUniversity,Edinburgh,MastersofNursingo EdinburghUniversity,MScDementia:InternationalExperience,Scotlando MurrayAlzheimerResearchandEducationProgram,OntarioCanadao NSWDepartmentofHealthDementiaCareResourceandTrainingNetworko FlindersUniversity,BachelorAppliedScience(Physiotherapy):Rehabilitationof

DegenerativeNeurologicalDisorderso UniversityofTasmania,Wicking’sUnderstandingDementiaMassiveOpenOnlineCourse

andBachelorofDementiaCareo YoungDementiaUK

REFEREESMr.GlennRees,Chair,Alzheimer’sDiseaseInternational0419303407,[email protected],AOOBE,journalist,businesswoman,televisionpersonalityandauthor,[email protected],(PastProfessorofInterdisciplinaryAgedCare,LaTrobeUniversity),0409392792,[email protected]


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SUMMARYOFPROFESSIONALANDVOLUNTEERINGEXPERIENCECo-founder,Chair,andCEO,DementiaAllianceInternational(DAI):DAIisaglobaladvocacyandsupportgroup,of,byandforpeoplewithdementiaofwhichIamacofounder.ThroughcollaborationwithAlzheimer’sDiseaseInternational(ADI),DAIisthevoiceofpeoplewithdementiaglobally,andthepeakbodyforpeoplewithdementia.AscurrentChairandCEOofthisinternationalgroup,Katemanagestheglobalnetwork,collaborationwiththeotherpeakbodiessuchasAlzheimer’sDiseaseInternational,aswellasbeingonmanyofthesubcommitteesandnumerousnationalandregionalDementiaWorkingGroups.Katefrequentlyengageswiththemedia,advocatingforhumanrights,respectfuldementialanguagebothinthemedia,andwithinthewidercommunity.

NotablyKatehasbeentheleadingadvocatedemandinghumanrightsanddisabilityrightsforpeoplewithdementia,andledthisactivismandmovementbypeoplewithdementiaasthefirstpersonwithdementiatobeaninvitedkeynotespeakerattheWorldHealthOrganisationinMarch2015attheFirstMinisterialConferenceonDementia.Thatyear,shewasoneoftwowinnersoftheNationalDisabilityAwardsin2015,asanEmergingLeadersinDisabilityAwareness.Alzheimer’sAustraliaDementiaAdvisoryCommittee:KateistheinauguralChairofthisgroup,andadvocatedfortwoyearsforittobesetupandsupportedbyAlzheimer’sAustralia.ThebroadpurposeoftheCommitteeIstobuildonconsumerfocuswithinAlzheimer’sAustraliaanditsStateandTerritorymemberorganisations,andincludesprovidingadviceandguidancetoAlzheimer’sAustraliaandtheFederalandstategovernmentsregardingtheissuesofimportanceorconcernspecificallytopeoplewithdementia.MembershipismadeupoftwelvepeoplewithdementiafromacrossAustralia,originallyfromtheagesof43and72.Itisthethirdofitskindintheworld,andtherearenowmanyothercountriessupportingDementiaWorkingGroups.KateisalsoveryactivelysupportingLowandMiddleIncomeCountriestosetthesegroupsup.Alzheimer’sAustraliaConsumerDementiaResearchNetwork(CDRN)Membersworkedtogethertosetprioritiesfordementiaresearchandresearchtranslation,andhaveresponsibilityfordrivingthedirection,assessmentandfundingdecisionsofAlzheimer’sAustralia’s$3.3mNationalQualityDementiaCareInitiative.Wehavedevelopedsubstantialexpertiseandasophisticatedunderstandingofthecomplexitiesofchanginghealthcarepracticetoreflectnewresearchfindings,andofevidence-basedapproachestodoingso.Thisinvolvementincludesanumberofsubgroupsandprojectsastheyarise.Thisgroupisnolongeroperational,althoughIamstillinvolvedinmanyresearchprojectsaroundAustraliaasaresultofit.Alzheimer’sAustraliaNationalConsumerAdvisoryCommittee(NCAC):ThebroadpurposeofthatCommitteeistobuildonconsumerfocuswithinAlzheimer’sAustraliaanditsStateandTerritorymemberorganisations,andincludesprovidingadviceandguidancetoAlzheimer’sAustraliaregardingtheissuesofimportanceorconcerntoconsumers;beingavailableforconsultationonissuesastheyarise;Identifyingemergingissuesofinteresttoconsumers;presentingaconsumerperspectiveinpublicforumsortothemedia;participatingonbehalfofAlzheimer’sAustraliaonexternalcommittees;contributingtoadvocacydocumentsincludingElectionManifestosandBudgetandothersubmissions;providingaconsumerperspectiveondementiaresearchpriorities;andmonitoringtheworkof


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Alzheimer’sAustraliainrelationtoconsumerissues.Thisinvolvementincludedanumberofsubgroupsandprojectsastheyarose.Thisgroupisnolongeroperational.Alzheimer’sAustraliaSA:ConsumersAllianceCommittee,DementiaFriendlyCommunitiesWorkingGroupandYoungerOnsetDementia(YOD)ReferencegroupConsultantprovidingagedanddementiacarestaffeducationandaconsumervoice:agrowingnumberofAgedCareproviders,includingGroupHomesAustralia,ACH,Eldercare,ECH,LorneHealthServices,LyndochLiving(Warnambool),UnitingCommunities,RACF’sandChaplains,MasonicHomes,ECH,ACH,Eldercare,Resthaven,UnitingCommunities,SA&NTDementiaTrainingStudyCentre,DomiciliaryCareSA,CaringChoice,SAHealth,DomiciliaryCare,CaringChoice,whospecificallyrequestsupportfromKatefortheirworkinimprovingtheserviceprovisionofdementiacare,andimprovingdementiaenvironments.Katealsolecturesatvariousuniversitycampusesforexample,RMITandtheUniversityofWollongong.UrbanMythTheatreGroupandECH:CollaboratingonaplayTheVisitorsaboutYoungerOnsetDementia,andmajorcontributortoaccompanyingOnlineSACEEducationPacktosupportRadioNationalplayaboutolderonsetAlzheimer’sdisease,AlsoAMirrorPurpleOrangeandDisabilitySA:MemberNationalDisabilityServicesSA:Consumeradvocate,variousprojectsincludingNDIS HealthConsumersAllianceSA(HCA):TheprincipalgoaloftheSteeringCommitteeistofurtherdeveloptherecommendationsoutlinedintheSouthAustralianHealthServiceFrameworkforOlderPeople2009-2016andtomonitorimplementationoftherecommendationsfromtheNetworkandServicePlan.Thisincludesadvisingonthedevelopmentofpatientcentred,sustainableandeffectiveclinicalservicesacrossthecontinuumofcareusingmodelsofcarebasedonbestpracticeandpopulationneed.Themodelsshallbereadilyaccessible,efficientlyprovidedandevidencebased.Considerationwillbegiventoarangeofapproachestoensureservicesareequitableforruralandremoteconsumers,AboriginalandTorresStraitIslanderandspecialpopulationgroups.

AdelaideFringeMyUnseenDisappearingWorld,withaccompanyingYouthEngagementProgramEducationPacksupportingYears11&12DomiciliaryCareSAtrainingDVD,Kate’sstory:aproductionfundedandproducedin2012bythestategovernmentofSAfortrainingofstaffwithinthedepartmentandDomiciliaryCareSAResthavenIncandUnitingCommunities:‘Insider’sviewofdementiaandanenabler’sperspective’apresentation;Trainingandprojectsrelatedto:‘Understandingthevulnerabilitiesofolderpeople’-Resthaven’sHACCInnovativeProjects;‘StrongerCommunitiesBrighterFutures’;‘ConsumersDirectingConsumerDirectedCare’and‘HeadstarttoIndependence’;‘AssetBasedCommunityDevelopment’,‘ValuedSocialRoles’,‘ImportanceofRelationshipsandSocialConnection’-relatedto‘StrongerCommunitiesBrighterFutures’.‘ConsumerDirectedCare-UnderstandingControl’:relatesto‘ConsumersDirectingConsumerDirectedCare’;SteeringCommitteefor‘StrongerCommunitiesBrighterFutures’and


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aparticipantforthebookletTheGoodTheBadandTheBrilliant:Lessonsfromthejourneyoflivingwithdementia,publishedin2012SubmissiontoAustralianGovernmentHouseofRepresentativesCommittees:InquiryintoDementia:EarlydiagnosisandIntervention,resultingininvitationtopublicmeetinginAdelaide

GrahamWrightandAssociates,SuccessMotivationInstitute(nowLeadershipManagementAustralia):motivationalspeakerfrom1992-1996.TheBereavedThroughSuicideSupportGroupInc(SA):CurrentlyProfessionalAdvisoryCommitteeMember;Volunteer,InauguralChair,griefsupportworker,medialiaison/communityawareness,griefeducatorandgriefsupportworkerIndigenousTutor,Psychology,LawandJournalism:UniversityofSARegionalSalesManagerroles:MölnlyckeHealthCare;MedicalConcepts,BunzlPtyLtd;RelianceMedical Owner,ManagingDirectorandheadChef:Babette’sFeastsPtyLtdoperatingasthreeseparatefulltimebusinesses,KateSwaffer’sKatering,CaféCakeandBeaumontHouseEventsGrahamWrightandAssociates:OperatingasafranchiseforSuccessMotivationInstitute,nowLeadershipManagementInstitute.Kateworkedforthisorganisationinacasualcapacity,teachingmotivationthroughtheSMIprograms,andasamotivationalspeakerforfouryears.Duringthistime,shewasanactivememberofRostrumAustralia,anorganisationtosupportfindingyourvoiceinpublicspeaking. NavalMilitary&AirforceClubSAInc.:PastBoardmemberFlindersUniversity,SchoolofMedicine:grieflecturerGlensidePsychiatricHospital:PastBoardmemberQualifiednurse:Kate’sfirstcareerwasinnursingspanning25years,specialisinginAgedandDementiacare,thenOperatingTheatres.Sheworkedatvariouspublicandprivatehospitalsandagedcarefacilities.Shecontinuestovolunteerinagedanddementiacare.

kate swaffer cv 1 july 2017 · 7/6/2017 · 2014 my theory of prescribed disengagement® received...

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