ALZHEIMER’SDISEASEINTERNATIONALASIAPACIFICREGIONALCONFERENCE2019KUALALUMPUR,MALAYSIASaturday,17August2019TheFirstYouthEngagementProgrammeTime:10:30–15:15Venue:Berlian&Baiduri
08.30–10.00 PLENARY2
10.00–10.30 COFFEEBREAK
10.35–10.40 KeynotebyGlennRees,ChairADI
10.40–10.45 Chairopens:PatriciaTumbelaka,ExecutiveDirector–Alzheimer’sIndonesia
10.45–11.00 ‘WordsforAJourney’:RealisingDementiaFriendlyCommunitieswithPatternLanguageYukaBanno&TomokiKaneko(Japan)
11.00–11.15 EstablishmentofAgriculturalandWelfareCooperationModelbyRaisedBedAgriculture-friendlyforPersonswithDementia:UniversalFarmingMethodShotaOkada&IkumiShimamura(Japan)
11.15–11.30 RaisingAwarenessofDementiathroughActivitiestoaMulti-generationalandMulti-disciplinaryAudiences:ADFCInitiativebyNursingStudentsKanadeOkubo&MizuhoKotaka(japan)
11.30–11.45 MentalHealth:CanWeJustTalk?DishenKumar(Malaysia)
11.45–12.00 FromCarertoHome-Care:AStartupJourneyKevinHoong(Malaysia)
12.00–12.15 UsinginnovationtoMinimiseStigma:Alzheimer’sIndonesiaExperiencePatriciaTumbelaka(Indonesia)
12.15–12.35 BringingTogethertheOldandtheYoungProfessorMalcolmJohnson(UK)
12.35–12.45 Q&A:Discussionsession
12.45–13.00 AHappyWindow
ChrisHumphrey(UK)
13:00–13.15 Story-TellingCompetition:AYEPAsiaPacificRegionProjectChair:DatinJacquelineWong,demensiaBrunei(Brunei)
Committee: DYSuharya,ADI(AsiaPacificRegion)ChrisHumphrey,A+ENetworks(UK/Singapore)DrSharonAndrews,UniversityofTasmania(Australia)OwenMcNeir,RemarkableLives(UK)DishenKumar,HealthMatters-astroAWANI(Malaysia)
13.15–14.00 LUNCHBREAK&SYMPOSIUM(MahkotaI)
14.00–14.05 Chairopens:MelissaChan,Founder-ProjectWeForget
14.05–14.20 Dementia:TheGreatTeacherDrAzlinaAhmadAnnuar(Malaysia)
14.20-14.35 WorkingwithPositiveAttention:MindfulnessintheWorkplaceDrEvavanderPloeg(TheNederlands)
14.35–14.50 TheJourneyofYoungCaregiversMelissaChan(Singapore)
14.50–15.05 CommunicatingwithPLWDs:AVolunteer’sExperienceElimPoon(Malaysia)
15.05–15.15 Q&A:Discussionsession
15.15–15.25 WHAT’SNEXT?AnEngagementSessionDYSuharya,RegionalDirector-AsiaPacificRegion,ADITheWHAT’SNEXT?themewaschosentoillustratetheendlesspossibilitiesandtheimportanceoftheyouthinspearheading:volunteerism,advocacy&awarenessofdementiaintheircommunity,andcreatinginnovatingideasintheprogresstocarryforthamoreoptimisticandopportunisticoutlookinthemidstofexistingattitudesandstigmaofdementiainmanycommunitiesatpresent.Additionalstrengthwithyouthvoicescalltoactionfornationaldementiaactionplanstowards2025,wheretherearenone-yet.
1525–1545 COFFEEBREAK
1545–1730 MeetTheExpertsVenue:MahkotaIIChairs:Quah,Gordon,Reena*DishenKumarrepresentingtheAsiaPacificRegionyouths1. SeanMangion,ChiefofStaff,OfficeoftheJuniorMinisterforPersons
withDisabilityandActiveAgeing,GovernmentofMalta(representingHon.AnthonyAgiusDecelis,JuniorMinsterforPersonswithDisabilityandActiveAgeing)
2. KlausZimmermann,CEOCommonAge (representingSirAndrewLarpent,Chair–Commonage3. GlennRees,ChairADI4. MelissaChan,ProjectWeForgot5. ChrisHumphrey,ProducerandDirectorofProduction,A+ENetworks
ASIA6. MartinVandendyck,WorldHealthOrganization
Sunday,18August2019Symposium22–Dementia:Youths’PerspectivesTime:10:30–13:00Venue:MahkotaI
08.30–10.00 PLENARY3
10.00–10.30 COFFEEBREAK
10.30–10.35 Chairopens:DishenKumar,HealthMatters–astroAWANIStoriesandExperiences
10.35–10.45 DishenKumar(Malaysia)Dementia:FromaGrandson’sPerspective
10.45–10.55 JyotiNagrani(Indonesia)IncreasingAwarenessthroughIntergenerationHomeVisitInitiatives
10.55–11.05 MaizatulOmar(Brunei)ExpecttheUnexpected:ACarer'sJourney,YouthTraininginDementiaCareSkillsandTowardsaDementia-friendlyNation'BruneiVision2035'
11.05–11.15 HarshaRavindran(Malaysia)StayingResilientinaChallengingWorldToday
11.15–11.25 MelissaChan(Singapore)DementiaAwareness,OutreachandSupportfortheEmergingGenerationofCaregivers
11.25–11.40 YukaBanno&TomokiKaneko(Japan)‘WordsforAJourney’:RealisingDementiaFriendlyCommunitieswithPatternLanguage
11.40–11.55 ShotaOkada&IkumiShimamura(Japan)EstablishmentofAgriculturalandWelfareCooperationModelbyRaisedBedAgriculture-friendlyforPersonswithDementia:UniversalFarmingMethod
11.55–12.10 KanadeOkubo&MizuhoKotaka(Japan)RaisingAwarenessofDementiathroughActivitiestoaMulti-generationalandMulti-disciplinaryAudiences:ADFCInitiativebyNursingStudents
12.10–12.20 Q&A:Discussionsession
12.20–12.30 WHAT’SNEXT?AnEngagementSessionDYSuharya,RegionalDirector-AsiaPacificRegion,ADIADI’sfirstAsiaPacificYouthEngagementProgramme(YEP)involvesyouthsandpresentersfromover20countriesandprovidesaplatformforengagementopportunitiesbeyondcountryborders.Wewanttoinspireyouthtobecomemoreinvolvedintheircommunitiesandbecomeadvocatesforpersonslivingwithdementia.Youthparticipationandinclusivityiscriticalfordementiacommunitiesglobally,asyoungpeopleplayaroleinvolunteerism,advocacyandawarenessofdementia.Throughsharingstoriesofyouthlivedexperiences(aroundcaringforpersonswithdementia),wehopetoeducateandchallengethestatusquoinhopetoinspireyouthstobecomemoreinvolvedinthecommunity.Wewillbepushingthe'traditional'boundariesofraisingawarenessanddisseminatingfindingsfromourStorytellingCompetition:AYEPAsiaPacificRegionProjecttocreateandsharenewknowledgewithvariedaudiences.ThethemeforWorldAlzheimer’sMonth2019is#LetsTalkAboutDementia.Solet'stalk.
12.30–13.00 CLOSINGCEREMONYAllparticipantsarerequestedtoadjourntoMahkotaII
PROFILESOFPRESENTERS&SPEAKERS(inorderofpresentation)
GLENNRees,AMAustraliaGlennReesstudiedeconomicsatLeedsUniversityintheUnitedKingdomandhasworkedatseniorlevelsintheBritishandAustralianPublicServices.IntheUK,heworkedasPrivateSecretarytoseniorMinistersandintheCabinetOfficeandinEconomicDepartments.InAustraliasince1976heworkedinprogramandpolicyareasincludingPrimeMinisterandCabinet,EmploymentandTraining,AgedCare,Disabilities,HousingandtheAboriginalandTorresStraitIslanderCommission.HewasChairoftheNursingHomesandHostelsReviewin1986andwasinvolvedinimplementingthefirstwaveofagedcarereformsto1993.HewasCEOofAlzheimer'sAustraliafrom2000to2015.Duringthistime,theDementiaInitiative:MakingDementiaaNationalHealthPrioritywasimplementedin2004andbecameanapproachtoactioninothercountries.Importantcommitmentsweremadetotackledementiainthe2012AgedCarereformsandin2014todementiaresearchwithA$200millionoverfiveyears.HeisanindependentBoardMemberofParkinson’sAustraliaandamemberoftheConsumerAdvisoryCommitteeoftheNationalHealthandResearchCouncil.HehasbeenChairofAlzheimer’sDiseaseInternationalsince2015.HelivesinCanberra,Australia.Co-Chair,Dementia-FriendlyCommunitiesSymposiumKeynoteSpeaker,YouthEngagementProgramme,APRC2019Panel,MeetTheExperts
PATRICIATumbelakaIndonesiaPatriciaisaregisterednurse,whoholdsaMaster’sdegreefromFlindersUniversity,SouthAustraliainFamilyandChildHealth.Sheisanexperiencedresearcherfocusesincommunityhealthandhasbeeninvolvedinseveralinternationalproject,namelyREACHOUTandSTRiDE.Currently,sheistheExecutiveDirectorofAlzheimer’sIndonesiaandoneoftheDementiaCareSkills(DCS)trainersinIndonesiasince2018.Pattywasactivelyinvolvedinawarenessraising,advocacy,educationsessionandhealthpromotioninthecommunityrelatedtoelderlyissues,especiallyAlzheimer’sdisease.UsingInnovationtoMinimiseStigma:Alzheimer’sIndonesiaExperienceForthepasttwoyears,Alzheimer’sIndonesiafocusonengagingyoungpeopletobemoreactivelyinvolvedinraisingawarenessaboutDementiaAlzheimer.Throughintergenerationhomevisitandfunwalk,weaimtoincreaseyouthparticipationtotakepartinthejourneyofcaring.
TOMOKIKanekoJapanAgraduatestudentoftheSchoolofMediaandGovernancefromKeioUniversity,Japan.Tomokiistheco-authorof‘WordsforAJourney’,apatternlanguageforlivingwellwithdementia(2015),anditisnowutilisedbydoctorsacrossJapan.‘WordsforAJourney’:RealisingDementiaFriendlyCommunitieswithPatternLanguage‘WordsforaJourney’isarevolutionaryroadmaptodementiathathelpspeoplelivingwithdementiacommunicatewiththeirlovedones.Themethodshavebeenhailedabreakthroughinthecareoftheelderly.Thisworkisbasedaround‘patternlanguage’whichoutlineshowdementiapatientsrelatetotheworldandhowbesttorelatetothem.Thetheoryreducesover300experiencesinto40commonproblemsthatpeoplelivingwithdementiafaceregularly.Thishelpspatients,theirfamiliesandcarerstohaveabetterunderstandingofthedisease’simpactontheirbehaviour,particularlycommunication.
YUKABannoJapanYukaBannoisastudentofSchoolofFacultyofPolicyandManagementKeioUniversity.Shecreatespatternlanguagesandresearcheswaystousethem.‘WordsforAJourney’:RealisingDementiaFriendlyCommunitieswithPatternLanguage‘WordsforaJourney’isarevolutionaryroadmaptodementiathathelpspeoplelivingwithdementiacommunicatewiththeirlovedones.Themethodshavebeenhailedabreakthroughinthecareoftheelderly.Thisworkisbasedaround‘patternlanguage’whichoutlineshowdementiapatientsrelatetotheworldandhowbesttorelatetothem.Thetheoryreducesover300experiencesinto40commonproblemsthatpeoplelivingwithdementiafaceregularly.Thishelpspatients,theirfamiliesandcarerstohaveabetterunderstandingofthedisease’simpactontheirbehaviour,particularlycommunication.
SHOTAOkadaJapanWorkingfor“Kotonoie”Group-homeforpeoplelivingwithdementiaandatKizunaya,asupportcentreforpeoplelivingwithyoungeronsetdementiaasacoordinator.UniversalFarmingMethod:EstablishmentofAgriculturalandWelfareCooperationModelbyRaisedBedAgriculture-friendlyforPersonswithDementiaAgricultureisfundamentalformanycommunities.Shotasharesinsightsintoaninnovativetechniqueinuniversalfarmingmethodsthatlightenstheworkload.Thisinnovation,incollaborationwithKindaiUniversity,wasdevelopedwiththeaimtocreatejobopportunitiesforawideportionoftheirlocalpopulation,includingpersonslivingwithdementia.ThissessionisjointlypresentedwithIkumiShimamura.
IKUMIShimamuraJapanStudent,FacultyofAgricultureattheKindaiUniversity.Besidesstudying,heestablishedO-LifeLLC,asocialbusinessaimingatthecollaborationofagricultureandsocialwelfareandhehasbeenpracticingtheuniversalfarmingmethodof“RaisedBedAgriculture.”UniversalFarmingMethod:EstablishmentofAgriculturalandWelfareCooperationModelbyRaisedBedAgriculture-friendlyforPersonswithDementiaAgricultureisfundamentalformanycommunities.Shotasharesinsightsintoaninnovativetechniqueinuniversalfarmingmethodsthatlightenstheworkload.Thisinnovation,incollaborationwithKindaiUniversity,wasdevelopedwiththeaimtocreatejobopportunitiesforawideportionoftheirlocalpopulation,includingpersonslivingwithdementia.ThissessionisjointlypresentedwithShotaOkada.
KANADEOkuboJapanThirdyearundergraduatestudenttakingtheCourseofNursingandPublicHealth,FacultyofNursing.MemberofNinchishoOrangeCircle,NiigataCollegeofNursing.RaisingAwarenessofDementiaThroughActivitiestoaMulti-generationalandMulti-disciplinaryAudiences:ADFCInitiativebyNursingStudentsInaffiliationwiththedementiaCaravanMate*(oneoftheapproachesintheDementiaSupporterCaravan–anationalcampaignalignedwiththeNewOrangePlan),agroupofstudentsgatheredtoconductdementiasupportereducationalcoursesaimedataudiencesfromprimaryschoolchildrenandlocalresidents,tohospital/facilitystaff.*TheOrangePlanisa“Five-YearPlanforPromotionofMeasuresAgainstDementia”launchedinSeptember2012.TheNewOrangePlanisa“ComprehensiveStrategytoAccelerateDementiaMeasures”launchedinJanuary2015.InJapan,adementiaawareness-trainingprogrammeknownastheDementiaSupporterCaravanisanationalcampaignalignedwiththeNewOrangePlan.TheDementiaSupporterCaravanisacampaigntoencourageearlydetectionandtreatmentwhilereducingprejudiceandgainingawareness.Ithasathree-tierapproach.Firstly,medicalprofessionalsspecialisingindementiatrainpeoplewhoareengagingmedicalservices,suchascaremanagers,nursingstaff,doctors,andvolunteerleaders.Peoplewhohavebeentrainedbymedicalprofessionalsarecalledcaravanmates.Secondly,caravanmatesprovideeducationalprogrammesandtrainingtolocalresidents,students,caretakers,hospitalworkers,andsoon.Peoplewhohavebeentrainedbycaravanmatesarecalledasdementiasupporters(or“Ninchisho”supporters).Thirdly,dementiasupporterssupportolderpeople,peoplewithdementia,andtheirfamiliesineverydaylife.This“trainthetrainer”approachmakesmuchnumberofsupporterswhohavegoodunderstandingaboutpeoplewithdementia,thissituationischaracterisedasa“caravan”.
MIZUHOKotakaJapanFourthyearundergraduatestudenttakingtheCourseofNursingandPublicHealth,FacultyofNursing.MemberofNinchishoOrangeCircle,NiigataCollegeofNursing.RaisingAwarenessofDementiaThroughActivitiestoaMulti-generationalandMulti-disciplinaryAudiences:ADFCInitiativebyNursingStudentsInaffiliationwiththedementiaCaravanMate*(oneoftheapproachesintheDementiaSupporterCaravan–anationalcampaignalignedwiththeNewOrangePlan),agroupofstudentsgatheredtoconductdementiasupportereducationalcoursesaimedataudiencesfromprimaryschoolchildrenandlocalresidents,tohospital/facilitystaff.*TheOrangePlanisa“Five-YearPlanforPromotionofMeasuresAgainstDementia”launchedinSeptember2012.TheNewOrangePlanisa“ComprehensiveStrategytoAccelerateDementiaMeasures”launchedinJanuary2015.InJapan,adementiaawareness-trainingprogrammeknownastheDementiaSupporterCaravanisanationalcampaignalignedwiththeNewOrangePlan.TheDementiaSupporterCaravanisacampaigntoencourageearlydetectionandtreatmentwhilereducingprejudiceandgainingawareness.Ithasathree-tierapproach.Firstly,medicalprofessionalsspecialisingindementiatrainpeoplewhoareengagingmedicalservices,suchascaremanagers,nursingstaff,doctors,andvolunteerleaders.Peoplewhohavebeentrainedbymedicalprofessionalsarecalledcaravanmates.Secondly,caravanmatesprovideeducationalprogrammesandtrainingtolocalresidents,students,caretakers,hospitalworkers,andsoon.Peoplewhohavebeentrainedbycaravanmatesarecalledasdementiasupporters(or“Ninchisho”supporters).Thirdly,dementiasupporterssupportolderpeople,peoplewithdementia,andtheirfamiliesineverydaylife.This“trainthetrainer”approachmakesmuchnumberofsupporterswhohavegoodunderstandingaboutpeoplewithdementia,thissituationischaracterisedasa“caravan”.
DISHENKumarMalaysiaDishenKumarisaBroadcastEngineerandPresenterforAstroAwaniChannel.HeisthehostofHealthMatterswithDishenKumar.Thetelevisionshowaimstoraiseawarenessonhealthandwellnessissuesfromtheperspectivesofphysiciansandpatients.AftergraduatingfromUniversityMalaysiaSabahwithaBachelor’sDegreeinElectricalandElectronicEngineering,Dishenhadtheopportunitytoworkinaconstructioncompany.However,hequicklyrealizedthatitwasnothispassionandfoundanopportunitytoentertheMediaandBroadcastingindustrythroughAstroAwani.WhileworkingcloselywithJournalistsandPresentersasapersonbehindthecamera,Dishenrealisedhewantedtobeinfrontofit.StartingonawebshowcalledV!VA,DishenhashostedPersonalitiMalaysiaMemilihandisacontributingwriterforAwaniReview.JugglinglifeasanEngineerandPresenter,Dishenhopestoinspireotherstopursuetheirpassion.MentalHealth:CanWeJustTalk?AsharingsessionbyDishenKumaronhowhismentalhealthwasaffectedindifferentsituationsthroughouthislife.Havingmentalhealthissuesisnottheproblem,butnotbeingabletoresolvethemis.WhatcanwedototakecareofourMentalHealth?Talk.Dementia:FromaGrandson’sPerspectiveTheexperienceofwatchingthepersonyoulovebecomingadistantshadowofthemselvesispainful.DishenKumarwillbesharinghispersonalstoryofcaringforhisgrandfatherandhowDementiamadeaoncegreatmanintosomeonehisowngrandsoncouldnotrecognise.Story-TellingCompetition:AYEPAsiaPacificRegionProjectChair: DatinJacquelineWong,demensiaBrunei(Brunei)Committee: DYSuharya,RegionalDirector,AsiaPacific-ADI ChrisHumphrey,A+ENetworks(UK/Singapore)–ProjectLead DrSharonAndrews,UniversityTasmania(Australia) OwenMcNeir,RemarkableLives(UK) DishenKumar,HealthMatters-astroAWANI(Malaysia)
KEVINHoongMalaysiaAsHomage’sHeadofOperationsforMalaysia,Kevin’sroleistointroducethecompany’smissionofdeliveringholisticpersonalhomecaretofamiliesinMalaysia,aswellasbeingresponsibleforthelaunchandgrowthofthebusinessinthemarket.Inadditiontopresidingoveroperationsandrecruitment,KevinalsoworkscloselywithhisSingaporecounterpartstoensurethatHomage’sproductandserviceofferingsarewellcommunicatedandadaptedtolocalneeds.BeforejoiningHomage,KevinwaspartofAirbnb’sAsiagrowthteamwhenthecompanyfirstlandedintheregion.Hehadcontributedtothecompany’sgrowthacrosscommunity,marketing,partnershipandsalesintheAsiaPacificregion.Today,Airbnbisoneofthemostsuccessfulaccommodationplatformsthatinspirestravelandhostingglobally.FromCarertoHome-careStartupJourneyOverthecourseof3years,Kevinhasexperiencedmultiplepersonallossesinhisfamily.Hislate-grandfatherandlate-uncle,hadbothsufferedfromstroke,andhislate-father,fromcancer.Asayoungcaregiver,hehadlittleveryknowledgeorguidanceonhowtocopewithcaregivingforhislovedones.Inhis5yearsofworkinginSingaporeinthetravelandtechnologyindustry,hehasexperiencedgrowingatechbusinesswhileworkingwithentrepreneursfromallwalksoflifeandbackground.Ashiscareerprogresses,hehadyearnedtoapplyhisskillsandknowledgetosolveproblemsthattrulymattertothecommunityaroundhim,andalsobackhomeinMalaysia.ThiswaswhenhejoinedHomageasthecompany’sHeadofExpansioninMalaysia.HavingbeenwithHomageforayear,hewasgiventheopportunitytolearnmoreaboutcaregivingthroughworkingwithdifferentstakeholdersinthecommunity,andalsothroughattendingdifferentcaregivingworkshopshimself.Duringthisworkshop,youwilllearnmoreabouthowcanoneconsideranentrepreneurialpathinthehealthcareandcaregivingspace,discussthepotentialchallengesandopportunitiesasone,especiallyayouth,takesonthisroleinhisorhercareer.
MALCOLMJohnsonUnitedKingdomProfessorMalcolmJohnsonwhoiscurrentlyVisitingProfessorofGerontologyandEndofLifeCareattheUniversityofBath,hasbeenProfessorofHealthandSocialPolicyattheUniversityofBristol(nowEmeritus)since1995.Hisresearchandacademicinterestsarewide,includingthesocialaspectsofhealthandillness,biographicalstudies,socialpolicyanalysis,deathanddyingandhismajorspecialism,ageingandthelifespan.Hisresearchandconsultancyincludeextensiveworkonthelongtermcareandthedomiciliarycareofolderpeople.Overthepastfifteenyearshehasextendedintodeathanddyingandendoflifecareandthedevelopmentofgoodpracticeinthatfield.Afive-yeardevelopmentconsultancywithAnchorTrustwonthe2007IndependentHealthcareInnovationinLongTermCareAwardandwasRunner-upinthe2007GuardianPublicServiceAwardforCareofOlderPeople.HewaspresentedwiththeBritishSocietyofGerontologyOutstandingAchievementAward,2014.Hismostrecentbooksare:TheCambridgeHandbookofAgeandAgeing;God,MeandBeingVeryOld(withKeithAlbans)andSpiritualDimensionsofAgeing(withJoannaWalker).BringingTogethertheOldandYoungOntheBAFTA-nominated'OldPeople'sHomefor4YearOlds'aheart-warmingC4programmewhichbroughttogetheroldandyounginanexperimenttotacklesocialisolation.This'experiment'offeredauniquelookonintergenerationalsocialcarethatbroughttogethertheveryyoungandtheveryoldforasix-weekperiodtoattempttoprovescientificallythatthesetwogenerationscantransformthephysical,socialandemotionalwellbeingoftheoldervolunteersforthebetter.Italsopresentedtheimpactofpre-schoolersonthemood,memoryandmobilityoftheoldergroup.ForthefirsttimeintheUK,thechildrenwereassessedontheiremotionalandsocialdevelopment,aswellaslanguageskills,whentheirclassmatesarealmostacenturyolder.WithoftheoverwhelmingsuccessofSeries1,ithashadconsiderableimpactthatStMonicaTrustinBristolhadannouncedtheywouldbeestablishingapermanentnurseryatoneoftheirsites.
CHRISHumphreyUnitedKingdomAsDirectorofProduction,ChrisHumphreyoverseesthecreationofregionalbroadcastcontentforA+ENetworks’wholly-ownedoperationacrossAsiaPacific.BasedinSingapore,Chrisisresponsibleforsupervision,frompitchtodelivery,ofallcommissions,co-productionsanddevelopmentofnewproductionsoutofAsia.Since2008,Chrishasoverseenmorethan400hoursoforiginalregionalcontentforHISTORY™,Lifetime™,FYI™,Crime+Investigation™andH2™,withcarriageinupto17territoriesintheregion.HehasproducedanddirectedexclusivepersonalbiographiesofformerThaiPrimeMinisterThaksinShinawatra,andtheSultanofBrunei.Chinesecontenthehasoverseenincludes‘‘China’sExtremeSkywalker’,‘MysteriesofChina’,‘WorldWarII:China’sForgottenWar’andtheUSDaytimeEmmyaward-winningdocudrama‘ScarsofNanking’.ChrisisalsotheHeadofStudies,CrossingBorders,aDocumentaryCampusandEuropeanDocumentaryNetworkjointtrainingprogramme.TheHappyWindowAlzheimer’shasa“happywindow.”It’sthatmomentwhereyourlovedoneshowsyouawholenewwayofdoingthings.ThemomentmymotherputSandwichesalongsidetheotherbooksinthebookshelfIknewthiswassomethingtocelebrate.Seeingthepositiveandfunnysideofthisdiseaseissoimportant.Asadirectorandwriter,IfoundIwaswitnessingfunny,endearingandbizarremomentsIsimplycouldn’tdreamup-evenifIwantedto.WithtwoparentswithAlzheimer’s,IamlookingtogatherandhearfrompeopletosharetheirHappyWindowstories.Story-TellingCompetition:AYEPAsiaPacificRegionProjectChair: DatinJacquelineWong,demensiaBrunei(Brunei)Committee: DYSuharya,RegionalDirector,AsiaPacific-ADI ChrisHumphrey,A+ENetworks(UK/Singapore)–ProjectLead DrSharonAndrews,UniversityTasmania(Australia) OwenMcNeir,RemarkableLives(UK) DishenKumar,HealthMatters-astroAWANI(Malaysia)
JACQUELINEWongBruneiDarussalamDatinJacquelineisHonoraryAdvisortodemensiaBrunei(dB),aregisteredNGOformedin2018tobethevoiceandadvocateforpeoplewithdementiaandtheircaregivers;andtoraisegreaterawarenessofdementiainBrunei.ShementorsandguidesdBundertheADITwinningProgrammeandMembershipDevelopmentProgramme.BesidesfacilitatingDementiaCareSkillsworkshopsandTrain-The-TrainerProgrammes,sheeffectivelyworkswithpolicymakers,legislativecouncilmembers,publicandgovernmentlinkcompanies,corporatesandinstitutionsinBrunei,andMalaysia.Someofhernotableachievementsincludeestablishingthefirstdementia-friendlycommunitycornerinashoppingmallinMalaysiaandintheAsiaPacificregion.Shehasalsowonnumerousaccoladesforhighstandardsofexcellenceinprint,media,socialcommunityinitiativesandCorporateSocialResponsibilityprojects.In2010,shereceivedthecoveted'MemberoftheYearAward2010/2011'fromMadison'sWho'sWhoUSAfor'…havingdemonstratedexemplaryachievementinsocialresponsibilitytothecommunityanddistinguishedcontributionstothebusinesscommunity’.Thisawardachievementcarriesalifetimemembership.Co-Chair,Symposium4:Dementia-FriendlyCommunitiesFacilitatorforthefirstASIAPACIFICREGIONYEPAPRC2019Story-TellingCompetition:AYEPAsiaPacificRegionProjectChair: DatinJacquelineWong,demensiaBrunei(Brunei)Committee: DYSuharya,RegionalDirector,AsiaPacific-ADI ChrisHumphrey,A+ENetworks(UK/Singapore)–ProjectLead DrSharonAndrews,UniversityTasmania(Australia) OwenMcNeir,RemarkableLives(UK) DishenKumar,HealthMatters-astroAWANI(Malaysia)
DYSuharyaIndonesiaDYistheRegionalDirectorofAlzheimer’sDiseaseInternationalAsiaPacificRegionandFounderofAlzheimerIndonesia,anNGOthatworkstowardgreaterDementiaAlzheimerawarenessandriskreductioninIndonesia.DYholdsaMasterofPublicHealth(MPH)fromCurtinUniversityPerth,Australia,aBachelorofArtsinCommunicationfromOhioStateUniversity,USAandaDiplomainEnglishLiteraturefromtheUniversityofIndonesia.DY,havemorethan20yearsofexperienceinpublichealth,publicprivatepartnershipsandcommunication,inthepast,DYhasworkedasaHealthCommunicationConsultantwiththeWorldBank,WHOandUNICEF.InadditiontoherroleinAlzheimerIndonesia,DYhasalsobeenworkingcloselywiththeWorldHealthOrganization,Indonesia’sMinistryofHealthandhavefacilitatedoneoftheworkinggroupattheNCDAllianceRegionalMeeting–StrengtheningtheNCDCivilSocietyMovementinSouthEastAsiaRegioninNewDelhi,July2015.DY’smotherwasdiagnosedwithVascularDementiain2009andhasbeenhersourceofinspirationinimprovingqualitylifeofpeoplewithdementia,caregiversandinter-generationsthroughtheestablishmentofAlzheimer’sIndonesiasince2013.HermotherpassedawayinApril2017butherlegacycontinues.WHAT’SNEXT?AnEngagementSession(1)The"What’sNext"themewaschosentoillustratetheendlesspossibilitiesandtheimportanceoftheyouthinspearheading:volunteerism,advocacy&awarenessofdementiaintheircommunity,andcreatinginnovatingideasintheprogresstocarryforthamoreoptimisticandopportunisticoutlookinthemidstofexistingattitudesandstigmaofdementiainmanycommunitiesatpresent.Additionalstrengthwithyouthvoicescalltoactionfornationaldementiaactionplanstowards2025,wheretherearenone-yet.
WHAT’SNEXT?AnEngagementSession(2)ADI’sfirstAsiaPacificYouthEngagementProgramme(YEP)involvesyouthsandpresentersfromover20countriesandprovidesaplatformforengagementopportunitiesbeyondcountryborders.Wewanttoinspireyouthtobecomemoreinvolvedintheircommunitiesandbecomeadvocatesforpersonslivingwithdementia.Youthparticipationandinclusivityiscriticalfordementiacommunitiesglobally,asyoungpeopleplayaroleinvolunteerism,advocacyandawarenessofdementia.Throughsharingstoriesofyouthlivedexperiences(aroundcaringforpersonswithdementia),wehopetoeducateandchallengethestatusquoinhopetoinspireyouthstobecomemoreinvolvedinthecommunity.Wewillbepushingthe'traditional'boundariesofraisingawarenessanddisseminatingfindingsfromourStorytellingCompetition:AYEPAsiaPacificRegionProjecttocreateandsharenewknowledgewithvariedaudiences.ThethemeforWorldAlzheimer’sMonth2019is#LetsTalkAboutDementia.Solet'stalk.
Story-TellingCompetition:AYEPAsiaPacificRegionProjectChair: DatinJacquelineWong,demensiaBrunei(Brunei)Committee: DYSuharya,RegionalDirector,AsiaPacific-ADI ChrisHumphrey,A+ENetworks(UK/Singapore)–ProjectLead DrSharonAndrews,UniversityTasmania(Australia) OwenMcNeir,RemarkableLives(UK) DishenKumar,HealthMatters-astroAWANI(Malaysia)
SHARONAndrewsAustraliaDrSharonAndrewsisaSeniorLecturerinNursingintheSchool,UniversityofTasmania.Herresearchandteachinginterestsspanageing,dementia,palliativecare,painmanagement,evidence-basenursing,participatoryactionresearch,criticalsocialtheoryandbehaviourchangetheory.SheisaRegisteredNurse,experiencedresearcherandacademic(RN,BN,Hons,PhD).Shehas20years’clinicalexperienceofworkingintheagedcaresectorand15years’experienceinthedesignandconductofparticipatoryandtranslationalresearch.SharonisaNationalHealthandMedicalResearchCouncil,TranslatingResearchintoPracticeFellowandaResearchFellowwiththeWickingDementiaResearchandEducationCentreUTAS.DrAndrewshascollaboratedonresearchprojectstotalingoverA$2.7millionandhasandhasaninternationalreputationforresearchintoevidence-basedcareforpeoplewithdementia,acrossareasofpainandpalliativecare.DrAndrewshas20peerreviewedpublications,inadditiontoknowledgetranslationtools.Story-TellingCompetition:AYEPAsiaPacificRegionProjectChair: DatinJacquelineWong,demensiaBrunei(Brunei)Committee: DYSuharya,RegionalDirector,AsiaPacific-ADI ChrisHumphrey,A+ENetworks(UK/Singapore)–ProjectLead DrSharonAndrews,UniversityTasmania(Australia) OwenMcNeir,RemarkableLives(UK) DishenKumar,HealthMatters-astroAWANI(Malaysia)
OWENMcNeirUnitedKingdomOwenMcNeiristheFounderofRemarkableLives.Asocialimpactventurethatharnessesthefamiliarityandconnectivityofsocialnetworkingtechnologytoimprovequalityoflaterlife,wellbeingandcareforourageingpopulation.BeforesettingupRemarkableLives,Owen’scareerbackgroundspanned20yearsinfundraisingandmarketing.Itwaswhilehelpingacarecharitywiththeirfundraisingstrategy,thathecameupwiththeconceptofadigitallifestoryapptobenefitolderpeopleandespeciallythoselivingwithdementia.Owen’smantrais:everyone’slifeisremarkableinsomewayandtosomeone.So,RemarkableLivesisforeveryoneandhewantseveryonetoknowaboutit,tostartsavingmemoriesbeforethey’relost,andtohelpusachieveourvisionofmakingtheworldalotlesslonelyandisolatedforarapidlyageingpopulation.
Story-TellingCompetition:AYEPAsiaPacificRegionProjectChair: DatinJacquelineWong,demensiaBrunei(Brunei)Committee: DYSuharya,RegionalDirector,AsiaPacific-ADI ChrisHumphrey,A+ENetworks(UK/Singapore)–ProjectLead DrSharonAndrews,UniversityTasmania(Australia) OwenMcNeir,RemarkableLives(UK) DishenKumar,HealthMatters-astroAWANI(Malaysia)
MELISSAChanSingaporeMelissaChanisHeadofCommunityandOutreachatHomage,anon-demandseniorhomecaresolutionthatmatchestrainedcaregiverstodeliverpersonalisedcarethroughsmarttechnology.SheisalsothefounderofProjectWeForgot(PWF),acommunityforcaregiverstopersonswithdementia.Thiswasinspiredbyherjourneyincaringforherfatherwithyoung-onsetdementia.Herexperiencespanssocialinnovation,communitygrowth,andbuildingbrandstrategiesforthefinance,hospitality,travelandtechnologysectors.MelissaservesonthesteeringcommitteefortheWorldYoungLeadersinDementia(WYLD)Network,drivingthedevelopmentofinnovativedementiasolutionsacrossdisciplinesandborders.TheJourneyofYoungCaregiversMelissawasabout14whenherfatherwasdiagnosedwithyoung-onsetdementia.Forthenext10years,shelivedeverydayseeingherfatherfighttheconditionandthefamily’sstruggletoredefinenormalcyuntilhepassedonin2014.Thejourneyofdementiawasabiglearningcurveforherandherfamily.Fromunderstandingthediagnosistocomingtotermswiththecondition,learningonadailybasiswhatitdoesandwhatitrobsfromaperson,balancingthecaregivingwiththeurgentneedsofthefamily,andsimply,experiencingtheheartacheofmissingapersonwhenheisrightinfrontofyou.Inspiredbyherjourneyincaringforherfather,MelissafoundedProjectWeForgotin2015.ProjectWeForgot(PWF)isacommunityforcaregiverstopersonswithdementiathatprovideslocally-relevantsupport,knowledge,andaccesstoservices.Mostrecently,MelissahasnowjoinedHomage,ahomecareplatform,toincreaseaccesstocareforfamilies.Thissessiondiscussesthejourneyofyoungercaregivers,thetrendsandcharacteristicsoftheemerginggenerationofcaregivers,andthepowerofcommunityandcollaboration.
AZLINAAhmadAnnuarMalaysiaDr.AzlinaAhmadAnnuar(BScNeuroscience-UniversityCollegeLondon;PhDNeurogenetics-ImperialCollegeLondon)isaseniorlecturerattheFacultyofMedicine,UniversityofMalaya.Herresearchinterestsareontheneurosciencesandthegeneticsofneurodegenerativediseases,suchasParkinson’sdisease,sensoryandmotorneuropathiesaswellasneuraltubedefects,braininjury,neuromusculardisordersandgliomas.Azlinaisinvolvedinmanycommunity-basedprojects,includingtheBrainAwarenessWeek,YouthEngagementprogrammeswiththeAlzheimer’sDiseaseFoundationMalaysia,andJeansforGenesMalaysia,acampaigntoraiseawarenessaboutgeneticdisorders.SheisaregularguestonBFM89.9radio,fortheBrainWavesshow,whereadiverserangeofneurosciencetopicsarediscussedwiththeaimtoengagethepublicmoreaboutneuroscienceresearch.Togetherwithherfather,sheisacaregivertohermotheraged76,whowasdiagnosedwithdementiain2013.Dementia:TheGreatTeacherWhenapersondevelopsdementia,duetochangesinbehaviourandcognitiveabilities,theyareoftenignoredandavoided.Thisispartlybecausethecommunitydoesnotknowhowtomanageandcommunicatewiththem,tohelpmaintaintheirqualityoflife.TheYouthEngagementProgrammehopestochangethispatternbyempoweringyouthwithskillstobecomemoreadeptandcomfortablearoundpersonslivingwithdementiaandtheircaregivers.Theyouthwillseetheimpactofdementiaandbecomeawareofthesymptomssothattheycanhelpthoseatrisktoseekmedicalcareearly,aswellasbemoreenlightenedabouttheimportanceoflookingaftertheirownhealth.
EVAvanderPloegTheNetherlandsDrEvavanderPloegisaresearchpsychologistwithafocusoncareforpeoplewithdementiaandolderpeoplewhoareconsideredtobevulnerableforanumberofreasons(physical,social,mental).Shehasworkedinthisfieldforover15years.Since2009alsoasapractitionerinnursinghomesdoingpsychosocialinterventionswithpeoplewithdementiainclosecollaborationwithstaff,volunteersandfamilymembers.Sheco-authored>25scientificarticlesstudyingaromatherapy,Montessori-basedactivities,lighttherapy,SpacedRetrieval,adigitalinterfaceandtheuseofSkypeinnursinghomes.WorkingfromBali,Indonesiasince2017,shehasongoingcollaborationswiththeU.S.A.andanumberofEuropeanCountriesasaresearcherandconsultant.In2018shehasstartedvolunteeringforALZi(theIndonesianAlzheimer'sFoundation).WorkingwithPositiveAttention:MindfulnessintheWorkplaceCarerstendtoforgettheeffectsofcaregivingontheirhealthandwell-being.Wecannotstoptheimpactofaprogressiveillnessonsomeoneforwhomwecare.Butthereisagreatdealthatwecandototakeresponsibilityforourpersonalwell-being.DrEvasharesbreathing/relaxationexercisesandtouchesonthephilosophyof‘mindfulness’,aswellassomepracticaltipslearnttoworkandinlife.
ELIMPoonMalaysiaElimPoonisafinalyearstudentfromtheFacultyofLanguageandLinguisticsintheUniversityofMalaya.Currentlytakingupacourse,LanguageDisorder.Thecourseexposesustothelinguisticfeaturesandunderlyingfactorsassociatedwiththedifferentdisorders.Inaddition,sheisalsocarryingoutaresearchproject(finalyearpaper)titledAssessmentofAvailableResourcesforCommunicationinvolvingPersonsLivingwithDementia.CommunicatingwithPersonsLivingwithDementia:AVolunteer’sExperienceElimwillbesharingfindingsfromherresearchprojectthatrevealsthatvolunteers’mainroleistointeractandcommunicateeffectivelywithPLWDs.Incommunication,thevolunteerswerefoundtohaveexperiencedseveralchallengessuchaslanguagebarrier,repetitivespeechpatternsamongthePLWDs,non-responsivenessofPLWDs,andthenon-understandingofthePLWDswithregardstowhatthevolunteershadcommunicatedtothem.Variousstrategiessuchaskeepingcalm,guessingwords,reiteratingofaquestionataslowerpace,andestablishingeyecontactweredevisedtoovercomethechallengesfaced.Anotherkeyfindingwasthatthereisaneedtoadaptcommunicationguidesavailableonlinetofitculturallylinguisticallydiversepopulationsandtorecruitvolunteerswhohavetheabilitytospeakvariouslanguagesuniquetothosepopulations.Furthermore,itwasagreedbyallthevolunteersthattrainingincommunicationwithPLWDisnecessaryforvolunteerspriortoembarkingonavolunteerprogramme.Theresourcesavailableonline(Demtalk)donotspecificallycoveraspectsregardingtrainingbutvolunteerscanadaptthecommunicationtipsavailabletosuittheirneeds.
JYOTINagraniIndonesiaJyotiholdsaMasterofHealthAdministrationfromTataInstituteofSciences,Indiaandiscurrentlyworkinginahealth-techstartupinJakarta.SheistheSecretaryofAlzheimer’sIndonesia.Since2017,JyotiisanactivevolunteerwithAlzheimer’sIndonesia.ShewasProjectManagerfortheAlzheimer’sDiseaseInternationalAsiaPacificRegionalConferenceinJakarta,IndonesiaheldinNovember2017.Passionateabouttechnologyandtheelderly,sheisalsoexploringtheuseoftechnologyandsocialmediatoengagingyouthinDementiaawareness.IncreasingAwarenessThroughIntergenerationHomeVisitInitiativesThissessionwillshowcasetheIndonesiaexperienceofengagingyouthstoincreasedementiaawarenessthroughtheIntergenerationHomeVisitMusicProgramme,WorldAlzheimer’sMonthactivitiesandsocialmedia.
MAIZATULOmarBruneiDarussalamMaizatulAkmamisaCulture,YouthandSportsOfficerattheMinistryofCulture,YouthandSports,BruneiDarussalamandhasbeenakeymemberofdemensiaBruneisince2017.AsaleadtraineronDementiaCareSkill(DCS)Course,sheisinvolvedwithsupportingandpromotingdementiabyconductingseminarsandworkshopsinrelationtodementiaawarenessespeciallytoyouths,youthorganisations,healthprofessionals,NGOs,governmentofficials,andmore.Additionally,theassociationmanagedtoorganisedfewimportanteventcalledthe“MemoryWalk&FunRun”inconjunctiontoWorldDementiaMonth(WDM)heldinSeptember2017and2018consecutively.Currently,achampioninthe“DementiaFriends”InitiativeProgramforBruneiaimingtoraiseawarenessandsign-upvolunteers.Duringhersparetime,shelikestowatchmovies,travellingandwatchingthefoodchannel.Shewillgoforcyclinganddoothersportsaspartofherleisureactivity.ExpecttheUnexpected:ACarer'sJourney,YouthTraininginDementiaCareSkillsandTowardsaDementia-friendlyNation'BruneiVision2035'Experiencesinlifeisablessingandaneyeopenerforme.Itallstartedwhenalovedoneisdiagnosedwithcancerandpassedawayyearslater.Indepressionandunabletogetbacktoroutine,myperspectiveinlifechanged.IwassecondedtotheDepartmentofCommunityDevelopment,MinistryofCultureYouthandSports.Itwasbychanceanopportunitytoattendadementiaawarenesstalk.Itwasthebeginningofajourneytocontributetothecommunity.SelectedtoparticipateinthefirstADITrain-The-TrainersProgrammeonDementiaCareSkillscourseforBruneiin2017,andfollowedbyAlzheimer'sUniversityinUKin2018.Ihavesincecontributedtoadvocacy,awareness,educationandriskreduction.AsoneofdemensiaBrunei'sfoundingmember,leadtrainerandachampionofDementiaFriendsBrunei,myfocusistoinspiretheyouthstakingownershipofownhealthandwellbeing,toleadameaningfullifeandcontributetheirtimeandknowledgeasfutureleaders.demensiaBrunei’seffortsandworkaretoaspiretoanactiveageinganddementia-friendlynationalignedwiththeBruneiVision2035–Strategy7:SocialSecurityforthePeople.
HARSHARavindranMalaysiaHarshaisa16yearsoldfoundingmemberofAscendanceandtraineroftheYouthProgram,‘AceItEasy’.Ascendanceisaplatformforyoungsterstostepoutofthesystem,becreativeandbecomepartofthesolutionsforworldproblems.To-datetheyhaveconductedtheprograminover20institutionsimpactingover800students,inthepast18months.Ascendanceisarecipientofthe’DianaAward’for2019.Ascendance‘AceItEasy’[AIE]programenablesotheryoungsterstovolunteerandcontributetosolvingworldproblems.Theyhavejustlaunched‘TheLifeProject’–aNationwideProjectinvolving120youngstersbelow18years.HarshahaspresentedAscendancevisionandworkonTedxtwicein2018andalsospeaksatconferencestocreateawarenessonthepoweroftheyoungergeneration.ShewasapanelistandvoiceofGenZintheAsianInstituteofFinanceConferenceinAugust2018.StayingResilientinaChallengingWorldTodayInanever-changingworldfullofuniquechallenges,stayingresilientinthepursuitofone’sownhappinessandgoalsisnotalwaysaneasyfeat:especiallyfortoday’syouthwhoaregrowingupinafast-pacedenvironmentwithouttheavenueorenvironmentforpersonalgrowthandreflection.Thissessionsshedslightonthestoriesofeverydayyouthonhowtheyareaidingothersandleavingtheirmarkontheworldintheirownwaywhilelearningandgrowingasindividualsaswellashowotheryouthouttherecangainthesupporttodothesame.