DesignforNext
12thEADConferenceSapienzaUniversityofRome
12-14April2017
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User-DesignedDementiaCarePathwaysAdisruptiveapproachtomappingdementiasupportservices
[AuthorNamesAffiliationnamesCorrespondingauthoremail]
Abstract:This paper reports on the first authorâs ongoing Arts and Humanities ResearchCouncil (AHRC) fundedPhD research exploring thepotential for disruptive designinterventionswithinthecontextofhealthandsocialcare.Thispaperdescribesanongoing project tomap the services available to peoplewith dementia and theircarers,withaspecificemphasisontheservicesavailablebeforethepatientreceivesaformaldiagnosisofdementia.Manyserviceusersaresimplyunawareof thesupportavailable to them,andarelefttonavigatetheirownpathsthroughtheunfamiliarandintimidatinglandscapeofdementiaservices.Thispaperreportsonthedevelopmentoftwotoolsforusebycarers,patients,anddementiaserviceproviders.Thesetoolsofferinnovativewaysofenablingserviceuserstovisualisethepathwayoftheircurrentandfuturecare,whilst alsoallowing serviceproviders to identify the strengthsandweaknesses inthetypeofsupporttheyprovide.
Keywords:disruption,dementia,innovation,mapping,servicedesign
1.IntroductionAround850,000peopleintheUKsufferfromsomeformofdementia(Judd&AlzhiemerâsSociety,2007)-acomplexandunpredictablebraindisorderassociatedwithprogressivecognitiveandphysicaldegeneration.Dementiamanifestsinmanydifferentways-therearemorethan200differenttypesofdementia-anditssymptomscanhaveawide-rangingimpactonpeoplesâhealth,independence,andtheirrelationshipswithfriendsandfamilymembers.Typicalsymptomsincludeâcommunicationandlanguageproblemsandchangesinpersonalityâ(UnforgettableFoundation,2015).Dementiacanalsobringabout,orexacerbate,physicalproblems,suchasfrailtyandpoorself-care.In2015,dementia(andphysicalconditionsarisingdirectlybecauseofdementia)becametheleadingcauseofdeathintheUK(OfficeforNationalStatistics,2016).Thereisnoknowncurefordementia.
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TheUKspendsÂŁ14.7bnondementiacareserviceseachyear,withafurtherÂŁ11.6bnvalueofunpaidcareprovidedbyâinformalcarersâ(AlzhiemerâsSociety,2015).Thereare670,000informalcarersintheUKwhoprovideunpaidcareforfriendsandfamilymemberswithdementia.Informalcarersoftenfeelmarginalizedastheyarelefttocopealoneastheirlovedoneundergoesasignificantdeteriorationinphysicalstateand/orpersonalitychanges.Thisleadstoaâbiographicaldisruptionâ(Bury,2982)aspatientsandcarersstruggletocometotermswiththenewlifecircumstancesforceduponthem.Thiscanleavebothpartiesdisorientatedandupsetasâagradual,terrible,horribleprogressionâ(Newkirk&Lui,2016)unfoldsbeforethem.Carersforpeoplewithdementiareporthigherthannormallevelsofstressanddepressionthanthosewhocareforolderpeoplewhodonotsufferfromdementia(WillsandSoliman,2001;Moiseetal,2004).
Informalcarersplayavitalroleinsupportingpeoplewithdementia.Becauseofthenatureofthecondition,manypatients(particularlythoseintheadvancedstagesofdementia)areunabletounderstandinformationputtothem,andinsomecaseslackthementalorphysicalcapacitytoexpressevenbasicwishes.Informalcarersâmanyofwhomhavespentalifetimewiththepatientâareuniquelypositionedtobridgethecommunicationgapbetweenserviceprovidersandserviceusers.
ThispaperwilldescribeanongoingArtsandHumanitiesResearchCouncil(AHRC)fundedcollaborationwithNewcastleCarers,anindependentcharitythatprovidesexpertandimpartialassistancetoinformalcarers.Thisassistanceincludespracticaladvice,emotionalsupportandcounselling,andcomplementarytherapy.Theauthorsâpreviousresearchinthisareaexploredtheexperiencesofinformaldementiacarersandtheirinteractionswithacomplexwebofhealthandsocialcareservices,aswellhowtheydesignedtheirownmethodsofmeetingthechallengestheyfaced.
Ourearlierprojects(Author,2015)highlightedalackofclarityinwhatarecollectivelyreferredtoasâdementiasupportservicesâ.TheseservicesarespreadacrosstheNationalHealthService(NHS),whichprovidesâhealthcareâ(i.e.clinicaltreatment),andlocalauthoritiesandcharitieswhichprovideâsocialcareââalthoughinpracticetheseservicesoverlapinnumerousways.Collectively,dementiasupportservicesincluderespitecare,medication,hospitalin-patienttreatment,andmanyotherformsofinterventionforbothpatientsandcarers.Carersuniversallyexpressedtheviewthattheyrequiredmoreassistanceinidentifyingthemostsuitablepaththroughwhatis,fromtheirperspective,anewandunclearlandscape.Furthermore,theyinformedusthatsuchassistancewouldbemostvaluableintheearlystagesoftheircaringroleâpriorto,orimmediatelyafter,dementiaisdiagnosed.Theyalsocomplainedofalackofguidanceastowhichspecificinterventionsmightassist(orhinder)theircaringroleâleadingsometomisstheseservicesaltogether.
TheongoingprojectdescribedinthispaperseekstoaddressthislackofclaritythroughthedevelopmentofmappingtoolswhichproposeaphysicaltopographyofdementiaservicesacrosstwolocationsinNorthEastEngland.Thephysicalartefactsdesignedintheseworkshopsarethefirststepstowardsestablishinganewapproachforengagingwithcarersandpeoplewithdementia.Inacceptingthatâsocialinnovationinvolvesâindeed,requiresâredistributingpowerâ(Westley,Zimmerman,&Patton,2007),theseinnovativemethodsofvisualisingdementiasupportservicesseektoplacegreaterpowerinthehandsofcarersandpeoplewithdementiawhoknowlittleifanythingaboutwhatchallengesawaitthemandwhichservicesarebestpositionedtoassistthemontheirindividualjourneys.
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2.AimsandObjectives 2.1DesignDisruptioninContext Theaimofthisresearchistodevelopdisruptivedesigninterventionsthatchallengethestatusquoandprovokenewresponsestothechallengesfacedbyinformalcarers.Theworkhereadoptsalargelyinterventionistapproach,whichisbasedonanumberoftheoriesemanatingfromresearchineconomic,business,anddesign(Christensen,1997;Christensen&Overdorf,2000;Scharmer,2011;RodgersandTennant,2012).ThetermâDesignDisruptionâwellestablishedacrossthecommercialsector,whereeconomiceffectsareoftenconcreteandmeasurable(Druker,1985).Bycontrast,publicservicesoperatewithinamorenuancedenvironmentandamorecomplexremit.YeeandWhite(2015)extensivelydiscusstheâgoalsandvalues[ofpublicservicedesign]thataremoreambiguousanddifficulttoquantifyâ,andofferexamplesofbarriersincludingâariskaverseâŚperformancedrivencultureandlackofincentivesâ1(Mulgan&Albury,2003).
ChristianBasonoftheDanishDesignCentrevisualisedtheroleofdesigninpublicservicewithinalinearprocessofexploration,policydevelopment,implementation,andassessmentofintendedandunintendedoutcomes.Thisapproach,however,situatesdesignwithinacomplexandever-changingpoliticallandscapeofâdisjointedincrementalismâ(DesignCommission,2014)inwhichtheurgentneedsofserviceusersclashwiththeglacialpaceofinstitutionalchange.DesignDisruption,bycontrast,declinestofollowtraditionalmodelsofpublicservicedesign.Instead,itplacesanemphasisonactionandreflection,âtrialanderror,hunchesandexperimentsâ(Mulganetal,2007),embracesfailureasavitalpartofthelearningprocess,andseekstodirectlyaddressasocietalchallengethroughadvocacy,provocation,andunearthingnewinsightsthatcanleadtofurtherinnovativeanddynamicinterventionsinpeoplesâlives.
DesignDisruptionsharesaconceptualspacewithCriticalDesigninthatitisarguablyâmoreofanattitudethananythingelse,apositionratherthanamethodologyâ(Dunne&Raby,2014).Thetermhasbeencriticisedasapotentialhindrancewithinthefieldofdesign,anâunnecessaryâ(Tonkinwise,2015)orpotentiallyâunhelpfulâqualification(Green,Rodgers,&Tennant2016).Throughoutourresearch,however,ithasofferedausefulvocabularytoestablishathemeofenergeticactivismandaspecificfocusonactionandimpact.Adoptingtheprefixofâdisruptionâhasassistedusinhelpingnon-designerstounderstandandbuyintotheexperimentalnatureoftheprojects.
Disruptionarisesâviaanintensejourney,aformativeeventâŚ[leadingdirectlytoa]discomfortordissatisfactionwiththeeverydaywayofworkingâ(Celaschi,2013).Howeveritisreached,theoverallgoalistocreateacounter-narrativeinfavourofpositivesocialandinstitutionalchange(Faud-Luke,2009)whilstrecognisingtheinherentriskthatsuchanarrativecanbemarginalised,âreducedtoexhibitionmaterialorusedtomaintainthestatusquoâ(Green,Rogers,&Tennant,2016),whensubsumedwithincomplexorganisations.Thedesignermusttreadcarefullytoengageproductivelywithhealthandsocialcareorganisationswhilstretainingtheindependencetoconstructivelycritique,provoke,andchallengeestablishedwaysofdoing(CostaandKallick,1993).
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Figure1.ChristianBasonâsvisualisationoftheprocessofservicedesign(black).Bycontrast,DesignDisruption(green)eschewsthedrawn-outpoliticalprocessofpolicydevelopmentinfavourofswiftactiontodirectlyaddresssocialchallenges.
ThisresearchaimstoofferaspaceforâhighlightingpotentialâŚtransformativevisionsâ(JĂŠgou,2010)withinpublicservices,wheretheever-presentpressuresofexpandinguserbasesanddwindlingfinancialresourcesmeanthatâinnovationhasbecomenothinglessthanasurvivalstrategyâ(Brown,2009).InGuiBonsiepeâs1997lectureâDesignbeyondDesignâ,presentedattheJanvanEyckAkademie,heproposedsixvirtuesfordesignbasedonItaloCalvinoâsâSixMemosfortheNextMillenniumâ.Bonsiepeâssecondvirtue,âIntellectualityâ,calledforamorecriticalstanceindesign.Thatis,designmustrocktheboat,critiqueâwhatisâandimagineâwhatcouldbeâ,andcontinuallycontestthelegitimisationofestablishedpowerbases.Theworkwepresentherestrivestofulfiltheseambitions.
2.2ResearchQuestions ⢠Howcandisruptivedesigninterventionshelpensurethatcarersandpeoplewithdementia
developagreaterunderstandingoftheoptionsavailabletothemasearlyaspossible?
⢠Howcanthesedesigninterventionsdevelopandremainusefultousersastheircircumstanceschange?
⢠Cantheseinterventionsbeofuseto,andbemaintainedby,dementiacaresupportservices?
⢠Canthisapproachaffectpositivechangeinhowcarersandpeoplewithdementiainteractwithdementiasupportservices?
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3.DementiaServiceMappingProject 3.1BackgroundIn2015wewereapproachedbytheNationalHealthService(NHS)EnglandfollowingtheinceptionofitsNorthernEnglandDementiaAdvisoryGroup(NEDAG),ataskforcecomprisedofseveralNHStrusts,PublicHealthEngland,localauthorities,andcharitableservices.Werecognisedthisasanopportunitytoworkwithaâsuitablegroupofpartnersand[theopportunityto]buildwiththemasetofsharedvaluesandconverginginterestsâ(Manzini,2015)necessaryforsuccessfulandsustainablecollaborativedesign.Weagreedtoexploretheoverlapbetweensocialservices-typicallyprovidedbycharitiesandlocalauthorities-andtheclinicalservicesoftheNHS.Inparticular,wewishedtoinvestigatethepossibilityofclarifyingapathway(oramultitudeofpathways)forpositiveinterventionswithcarersandpeoplewithdementiaatthepre-diagnosisstage,whentheytypicallyreceivelittleornosupport.
TheNationalInstituteforClinicalExcellence(NICE)publishaâDementiaOverviewâ-acomprehensiveandregularlyupdatedonlinesupporttoolforusebycliniciansspecialisingindementiacare.Itoutlinesbest-practicetreatmentpathwaysandoverarchingguidingprinciplesforNHSstaffinprovidingcareforpeoplewithdementia.TheNICEDementiaPathwaydoesnot,however,provideanyassistanceforthemanypeoplewithdementiaandtheircarerswhodealwiththeconditionformanyyearsbeforeadiagnosisisestablished.Bytakingstepstoidentify,intervene,andassistcarersandpatientsearlier,theNEDAGaimtomitigateorentirelyavoidcrisesinthefuture,andtherebyrelievefinancialpressureontheirservicesaswellastheemotionaltollontheserviceusers.
Figure2.DetailoftheNationalInstituteforClinicalExcellence(NICE)DementiaOverviewonlinesupporttool.
Weproposedtoexplorethepotentialforcreatingartefactsthatinvestigatedtheexperiencesofpre-diagnosiscarersandpatientsandwhethertheirgoalsareassistedbyexistingservices.WeagreedtopilotthisprojectintwoareasoftheNorthEastofEngland.ThefirstisStockton-on-Tees,whichin2014wonrecognitionforitsworkindevelopingaâDementiaFriendlyCommunityâ(StocktonBoroughCouncil,2014).ThesecondisNorthTyneside,aconurbationclosetoNewcastleuponTyne,
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whichhascomparativelylittleinthewayofdementiasupportservices.Separatedgeographicallybyaround35miles,thesetwoareasconsistofbroadlysimilarpopulationsize(eacharound200,000people)andage/racedemographics(OfficeforNationalStatistics,2012),whichwillallowforavalidcomparisontobedrawnbetweentheservicesavailableinthetwolocations.
ThispaperreportsonthedevelopmentoftheprojectinStockton-on-Tees,withtheNorthTynesideprojectduetocommenceinearly2017.
4.Methodology Themethodologyadoptedforthisprojectwasthatofadisruptiveapproach(seeabove)manifestedviaActionResearch(Lewin,1946),involvingasequenceofplanning,acting,observing,andreflectingontheintendedandunintendedoutcomes.Astheprojectisongoing,thismethodologyisnotaclosedcirclebutaspiral(CarrandKemis,1986)wheretheprocessofreflectiondirectlyinformsthenextstageofplanning,andsoon.WeorganisedtwoworkshopstoinvestigatethedementiaservicelandscapeinStockton-on-Tees.
Workshop1,19thOctober2016
Theparticipantsinthisfirstworkshopwere15carersandpeoplewithdementia.Thiswasaninformalsessionwhereweaskedparticipantstorespondtosimpleprobesabouttheirlives,theirhopesforthefuture,andtheirexperienceswithdementiacareservices.Whippleâs(1987)CommunityofPracticemodelespousedthatâknowledgeiscreatedandnotsimplytransferredandisconsideredtobelocatedintheâcommunityâratherthantheindividualâ;likewise,theseaccumulatedresponsesprovideduswithinsightsintotheindividualexperienceswhichwerethenusedasthebasisforasemi-structuredgroupdiscussionabouttheirexperiencesandconcernsuniquetotheStocktonarea.
ThisworkshopgeneratednumerousinsightsintotheexperiencesofpeopleinStockton,including:
⢠Ageneralsatisfactionwiththelevelofpost-diagnosissupportreceived,butfrustrationanduncertaintypriortothis.Someparticipantsexplicitlystatedthattheyfeltâlostâwhenattemptingtonavigateservicesofwhichtheyhadnopriorknowledge;
⢠Aconsensusthatthecarersandpatientsfeeloverwhelmedanddisorientatedwhenthepatientâsneedsrequirethemtomoveoutoftheirownhomesandintostaffedcarehomes.Theprocesswasdescribedasâlabyrinthineâandallpartieswhohadexperiencedthistransitionfelttheydidnothaveavoiceinthisprocess;
⢠Theexperiencesofsomecarerswildlydifferedfromothers,eventhoughtheyaccessedthesameorganisations;
⢠Thevastmajorityofcaretakesplaceinanon-medicalcontext(suchasthefamilyhome)ratherthanamedicalcontext(suchasahospital).
⢠Whendescribingtheirexperiences,participantsusedavocabularywhichechoedthatofaphysicaljourney.Theyfeltâlostâ,theytookâwrongturnsâalongaâlonganddifficultroadâ,andattimesfeltâtrappedâ.
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Figure3.Imagesoftheoutcomescreatedatthefirstworkshop.(right)Oneoftheresponsesofawomancaringforherhusbandwhohasdementia.Thisgivessomeindicationoftheissueswhichareimportanttothiscarerâforexample,theimportanceofstrongfamilyties,balancingherownhealththeneedsofherhusband,andherdesireenjoylifeoutsidetheâcaringroleâ.
Thisworkshopwasfollowedbyareflectioncycle(McNiff&Whitehead,2006)duringwhichtheauthorsconsideredtheoutcomesoftheworkshopandhowbesttousethemasthebasisforthesecondworkshopduetotakeplacethefollowingmonth.Duringthisperiodofreflection,wedistilledtheoutcomesintoeightdistinctgoalssharedbycarersandpeoplewithdementia.Thegoalswere:
⢠Tobehappy;
⢠Tofeeluseful;
⢠Tobeabletoplanahead;
⢠Toknowwhattheyareentitledto;
⢠Tofeellistenedto;
⢠Tochoosetolivethewaytheywished;
⢠Tohaveassistanceincopingwithcrises;
⢠Tolivehealthyandactivelives.
Thisledustoconsiderhowdementiaserviceproviders,whotypicallyhaveverynarrowremits,helppeopletofulfiltheseabstractgoals.Werecognisedaninterestingtensionbetweentheserviceprovidersâapproachoffocussingonveryspecificoutcomes,andthecomparativelyabstractnatureoftheabovegoals.ThistensionwasconsideredbyBurnsetalintheir2006REDPaper:
âHere,emotionalconsiderationsareequaltopracticalones,andthisdemandstheabilitytolookataproblemfromaperspectivethatmaybefundamentallydifferentfromthatofthebusiness-ownerorservice-provider.â
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Toencouragethisnewperspective,weadoptedthefamiliarvisualdeviceofatransitmapwiththeserviceuserplacedfirmlyinthecentreoftheprocess.
Figure4.Thegoalsofpeoplewithdementiaandtheircarers,visualisedaseightdistinctpathstheycouldtake.
Workshop2,23rdNovember2016
Thissecondworkshopwasattendedby18participants,eachofwhomrepresentedanorganisationprovidingsupportfordementiapatientsandorcarers.Theywerejoinedbyhusbandandwife(whowerealsoapatientandcarerrespectively),whoalsoparticipatedinthefirstworkshop.Theyrequestedtocontinuetoparticipateinthedesignprocessandgivetheirviewsontheoutcomesproducedattheworkshop.
Weaskedtheparticipantstoconsiderthemanyinterventionseachoftheirservicesprovide-frominformationleafletstodementiacafĂŠs,employmentsupporttohealthylivingadviceâandtoplacethemonthemapaccordingtothegoalstheyhelpedusersfulfil.Eachorganisationfoundthattheirdifferentinterventionsoccupiednumerouspaths,andthustheycouldidentifythatseveralorganisationsoverlappedsignificantly,withsomepursuingsimilarinterventionswithidenticalgoals.Thishighlightedspaceforpotentialcollaborationbetweentheirservices.
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Figure5.ThecompletedâInterventionsMapâ.
Pre-diagnosisserviceswerehighlightedatthecentreofthemap,allowingustofocusonthesespecificinterventionswithintheirwidercontext.Itisclearthatonlyasmallproportionofdementiaservicesprovideanyassistanceatthisstage,withthevastmajoritybeingâpassiveâinformationgatheringservicessuchasfactsheets,ratherthanprovidingâactiveâplanningandassistance.Thishighlightstheuntappedpotentialforprovidingassistanceatanearlierstage.
Thismappingtechniquegeneratedadenseamountofinformationwhichweareintheprocessofdecoding.Oncethisinformationisproperlyorganised,wewillofferittoserviceuserswhowillbeabletodecidewhichintervention,orcombinationofinterventions,isrightfortheirspecificneeds.Thisstandsinmarkedcontrasttothecurrentapproachwherethisinformationisheldwithinorganisationsandawayfrompublicview.
Figure6.Samplesofthespecificinterventionsavailabletocarersandpeoplewithdementiaatdifferentstagesoftheirâjourneyâthroughdementiaservices.
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Figure7.Potentialusesforthismappingtechnique.Individualserviceuserscanseeacomprehensiveoverviewofthepotentialinterventionsavailabletothem,identifythespecificonestheywishtoengagewith,andcreatetheirownbespokepathwaysthroughthevariousdementiaservices.
FollowingtheproductionofthisInterventionsMap,wethenaskedtheparticipantstoconsiderdementiaasajourneythroughaphysicalenvironment,withamixofdangerousterrainandpleasantvistas.Theparticipantspopulatedthismapaccordingtowheretheyfelttheirservicesshouldbesituated.Someorganisationsoperateindistinctareas,whilstothers(mostnotablytheNHS)drewmultiplepointsofinterventioncoveringlargeswathesofthelandscape.
âMapsgivetheirreadersthesimpleandmagicalabilitytoseebeyondthehorizonâ(Fawcett-Tang,2008),andthiscartography,basedonamentalratherthanliteralenvironment,hasthepotentialtohelpserviceuserstoseebeyondthehorizonsoftheirownexperience,tosituatethemselveswithinanexistingframework,andtoplanwheretheycouldgonextandwhichserviceswillbebestpositionedtoprovidethemwithassistance.Weplantoproducenumerouscopiesofthismapandinviteserviceuserstodrawtheirownpathsthroughthelandscape,allowingthemtoseewheretheyhavebeenandwheretheywishtogo.
IndesigningthefeaturesoftheStockton-on-TeesDementiaLandscape(Figure8)âsuchasTheDreadedFinancialSwamportheCareHomeMazeâwesoughttointroducesomelevityintoanareaofhealthandsocialcarewhichisoftencharacterisedasanunwelcomeburden.WeweremindfulofBissonandLucknerâs(1996)viewthatâfuncanhaveapositiveeffectonthelearningprocessbyinvitingintrinsicmotivation,suspendingoneâssocialinhibitions,reducingstress,andcreatingasenseofrelaxedalertness.âApproachingthesedifficultissueswithasenseofplayfulnessmayfacilitatedifferentoutcomesthantheâcrisismanagementâapproachsooftenseeninhealthandsocialcare.Thetoprightcornerofthemapbearsthesloganâherebedragonsâ,inrecognitionthatanyartefactwecreatecannotfullyencompassthemyriadexperiencesofallserviceusers.Thisisachallengecommontoallcartography,butitmustbeacceptedthatâadistortedmentalmodelmaybebetterthannomentalmodelatallâ(Roberts,Gray,&Lesnik,2016).Weinvitefutureparticipantstoeditthemaptoreflecttheirownrealities.
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Figure8.DigitisedversionoftheStockton-on-TeesDementiaLandscape,withexplanatorykey.Alargerversionofthemapcanbefoundat[websiteredacteduntilfinalacceptance].
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5.InitialFindings/Contribution Inthisproject,wedevelopedtwoverydifferentmethodsofquicklygatheringdatatocreatephysicalmapsofdementiaserviceswithinaspecificregion.Wecollectedsignificantamountsofrawdatathroughaprocessofobservation,reflection,andswiftaction.Theoutcomescanbeinterpretedinmanywaysandfordifferentpurposes,andweareintheprocessofrefiningthehandmadeartefactsintowell-structured,understandableproductswhichcanbedistributedwidely.
Fordementiaserviceproviders,themapsofferanovelwaytovisualisetheirinterventionsinpeoplesâlives,toseewheretherearegapsinthesupporttheyoffer,andtohighlightcommongroundandpotentialspacesforfuturecollaboration.Indoingso,thisprojectisasteptowardsconfrontingâinstitutionalandprofessionalbordersâ(Ehn,Nilsson,&Topgaard,2014)whichmaypreventserviceusersfromreceivingtherightsupportattherighttime.Byengagingtheminacollaborative,co-designprocess,weofferedthemspacetoâjointlyexploreandarticulatetheirlatentneedsandjointlyexploreandmakesolutionsâ(Steed,Manschot,&DeKoning,2011)tothoseneeds.Nowthetopographyofcarehasbeenmadevisible,thereisafurtherchallengetoexplorewhetherthisresearchcanformpartofaprocessofâcontinuouslearningandredesigningâ(Fuad-Luke,2009),orwhetheritisasinglesnapshotofalandscapethatwillinevitablyshift.
Forcarersandpeoplewithdementia,theyoffernewwaystointeractwithdementiaservices,helpthemtoplanforthefuture,andtoarticulatetheirexperiencesinnewways.Aswithallmaps,theseâredescribetheworldâ(Harley,2002)inwayswhichchallengetheexistingstructuresofpowerandpractice.Atthisprojectâsinception,wewereaskedtoconsiderwhetherwecoulddesignapathwayforserviceusersintheveryearlystagesofdementiacare.Thesemapsreflectthelivedrealityâthatthereisnosinglepathwayforeveryonetofollowâbutinvitesthemtocreatetheirownpathwaystomeettheirspecificchallenges.
TheseworkshopswillberepeatedinNorthTynesideinJanuaryandFebruary2017.Oncethesemapsarecompleted,wewillbeabletodrawcomparisonsbetweenthetypeofdementiacareservicesavailableineachoftheseareas.Thismayfurtherassistserviceprovidersineachlocationtoconsidertheneedsoftheirserviceusersandthelevelofsupportthey,inturn,provide.
âWethinkthatweâreintheartefactbusiness,butweârenot;weâreintheconsequencebusinessâ(Chocinov,n.d.)âandthetruevalueofthesedesigninterventionscomesinwhethertheyresultinoutcomeswhicharevaluabletoallstakeholders.Wedonotproposethatthesemapsshouldreplaceface-to-facediscussions,butbeusedtoaddvaluetothemasatooltoencouragenewinsights.WewishtoempowerdementiaserviceprovidersandtheirserviceuserstofeelabletopointtoamapandaskâandwhataboutthisâŚ?â
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