User-Designed Dementia Care...

DesignforNext

12thEADConferenceSapienzaUniversityofRome

12-14April2017

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User-DesignedDementiaCarePathwaysAdisruptiveapproachtomappingdementiasupportservices

[AuthorNamesAffiliationnamesCorrespondingauthoremail]

Abstract:This paper reports on the first author’s 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&Alzhiemer’sSociety,2007)-acomplexandunpredictablebraindisorderassociatedwithprogressivecognitiveandphysicaldegeneration.Dementiamanifestsinmanydifferentways-therearemorethan200differenttypesofdementia-anditssymptomscanhaveawide-rangingimpactonpeoples’health,independence,andtheirrelationshipswithfriendsandfamilymembers.Typicalsymptomsinclude“communicationandlanguageproblemsandchangesinpersonality”(UnforgettableFoundation,2015).Dementiacanalsobringabout,orexacerbate,physicalproblems,suchasfrailtyandpoorself-care.In2015,dementia(andphysicalconditionsarisingdirectlybecauseofdementia)becametheleadingcauseofdeathintheUK(OfficeforNationalStatistics,2016).Thereisnoknowncurefordementia.

AUTHOR’SNAMES(LEAVEBLANK)[STYLE:_DfNRUNNINGHEADEven]

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TheUKspends£14.7bnondementiacareserviceseachyear,withafurther£11.6bnvalueofunpaidcareprovidedby“informalcarers”(Alzhiemer’sSociety,2015).Thereare670,000informalcarersintheUKwhoprovideunpaidcareforfriendsandfamilymemberswithdementia.Informalcarersoftenfeelmarginalizedastheyarelefttocopealoneastheirlovedoneundergoesasignificantdeteriorationinphysicalstateand/orpersonalitychanges.Thisleadstoa“biographicaldisruption”(Bury,2982)aspatientsandcarersstruggletocometotermswiththenewlifecircumstancesforceduponthem.Thiscanleavebothpartiesdisorientatedandupsetas“agradual,terrible,horribleprogression”(Newkirk&Lui,2016)unfoldsbeforethem.Carersforpeoplewithdementiareporthigherthannormallevelsofstressanddepressionthanthosewhocareforolderpeoplewhodonotsufferfromdementia(WillsandSoliman,2001;Moiseetal,2004).

Informalcarersplayavitalroleinsupportingpeoplewithdementia.Becauseofthenatureofthecondition,manypatients(particularlythoseintheadvancedstagesofdementia)areunabletounderstandinformationputtothem,andinsomecaseslackthementalorphysicalcapacitytoexpressevenbasicwishes.Informalcarers–manyofwhomhavespentalifetimewiththepatient–areuniquelypositionedtobridgethecommunicationgapbetweenserviceprovidersandserviceusers.

ThispaperwilldescribeanongoingArtsandHumanitiesResearchCouncil(AHRC)fundedcollaborationwithNewcastleCarers,anindependentcharitythatprovidesexpertandimpartialassistancetoinformalcarers.Thisassistanceincludespracticaladvice,emotionalsupportandcounselling,andcomplementarytherapy.Theauthors’previousresearchinthisareaexploredtheexperiencesofinformaldementiacarersandtheirinteractionswithacomplexwebofhealthandsocialcareservices,aswellhowtheydesignedtheirownmethodsofmeetingthechallengestheyfaced.

Ourearlierprojects(Author,2015)highlightedalackofclarityinwhatarecollectivelyreferredtoas“dementiasupportservices”.TheseservicesarespreadacrosstheNationalHealthService(NHS),whichprovides“healthcare”(i.e.clinicaltreatment),andlocalauthoritiesandcharitieswhichprovide“socialcare”–althoughinpracticetheseservicesoverlapinnumerousways.Collectively,dementiasupportservicesincluderespitecare,medication,hospitalin-patienttreatment,andmanyotherformsofinterventionforbothpatientsandcarers.Carersuniversallyexpressedtheviewthattheyrequiredmoreassistanceinidentifyingthemostsuitablepaththroughwhatis,fromtheirperspective,anewandunclearlandscape.Furthermore,theyinformedusthatsuchassistancewouldbemostvaluableintheearlystagesoftheircaringrole–priorto,orimmediatelyafter,dementiaisdiagnosed.Theyalsocomplainedofalackofguidanceastowhichspecificinterventionsmightassist(orhinder)theircaringrole–leadingsometomisstheseservicesaltogether.

TheongoingprojectdescribedinthispaperseekstoaddressthislackofclaritythroughthedevelopmentofmappingtoolswhichproposeaphysicaltopographyofdementiaservicesacrosstwolocationsinNorthEastEngland.Thephysicalartefactsdesignedintheseworkshopsarethefirststepstowardsestablishinganewapproachforengagingwithcarersandpeoplewithdementia.Inacceptingthat“socialinnovationinvolves—indeed,requires—redistributingpower”(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).Theterm“DesignDisruption”wellestablishedacrossthecommercialsector,whereeconomiceffectsareoftenconcreteandmeasurable(Druker,1985).Bycontrast,publicservicesoperatewithinamorenuancedenvironmentandamorecomplexremit.YeeandWhite(2015)extensivelydiscussthe“goalsandvalues[ofpublicservicedesign]thataremoreambiguousanddifficulttoquantify”,andofferexamplesofbarriersincluding“ariskaverse…performancedrivencultureandlackofincentives”1(Mulgan&Albury,2003).

ChristianBasonoftheDanishDesignCentrevisualisedtheroleofdesigninpublicservicewithinalinearprocessofexploration,policydevelopment,implementation,andassessmentofintendedandunintendedoutcomes.Thisapproach,however,situatesdesignwithinacomplexandever-changingpoliticallandscapeof“disjointedincrementalism”(DesignCommission,2014)inwhichtheurgentneedsofserviceusersclashwiththeglacialpaceofinstitutionalchange.DesignDisruption,bycontrast,declinestofollowtraditionalmodelsofpublicservicedesign.Instead,itplacesanemphasisonactionandreflection,“trialanderror,hunchesandexperiments”(Mulganetal,2007),embracesfailureasavitalpartofthelearningprocess,andseekstodirectlyaddressasocietalchallengethroughadvocacy,provocation,andunearthingnewinsightsthatcanleadtofurtherinnovativeanddynamicinterventionsinpeoples’lives.

DesignDisruptionsharesaconceptualspacewithCriticalDesigninthatitisarguably“moreofanattitudethananythingelse,apositionratherthanamethodology”(Dunne&Raby,2014).Thetermhasbeencriticisedasapotentialhindrancewithinthefieldofdesign,an“unnecessary”(Tonkinwise,2015)orpotentially“unhelpful”qualification(Green,Rodgers,&Tennant2016).Throughoutourresearch,however,ithasofferedausefulvocabularytoestablishathemeofenergeticactivismandaspecificfocusonactionandimpact.Adoptingtheprefixof“disruption”hasassistedusinhelpingnon-designerstounderstandandbuyintotheexperimentalnatureoftheprojects.

Disruptionarises“viaanintensejourney,aformativeevent…[leadingdirectlytoa]discomfortordissatisfactionwiththeeverydaywayofworking”(Celaschi,2013).Howeveritisreached,theoverallgoalistocreateacounter-narrativeinfavourofpositivesocialandinstitutionalchange(Faud-Luke,2009)whilstrecognisingtheinherentriskthatsuchanarrativecanbemarginalised,“reducedtoexhibitionmaterialorusedtomaintainthestatusquo”(Green,Rogers,&Tennant,2016),whensubsumedwithincomplexorganisations.Thedesignermusttreadcarefullytoengageproductivelywithhealthandsocialcareorganisationswhilstretainingtheindependencetoconstructivelycritique,provoke,andchallengeestablishedwaysofdoing(CostaandKallick,1993).


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Figure1.ChristianBason’svisualisationoftheprocessofservicedesign(black).Bycontrast,DesignDisruption(green)eschewsthedrawn-outpoliticalprocessofpolicydevelopmentinfavourofswiftactiontodirectlyaddresssocialchallenges.

Thisresearchaimstoofferaspacefor“highlightingpotential…transformativevisions”(Jégou,2010)withinpublicservices,wheretheever-presentpressuresofexpandinguserbasesanddwindlingfinancialresourcesmeanthat“innovationhasbecomenothinglessthanasurvivalstrategy”(Brown,2009).InGuiBonsiepe’s1997lecture“DesignbeyondDesign”,presentedattheJanvanEyckAkademie,heproposedsixvirtuesfordesignbasedonItaloCalvino’s“SixMemosfortheNextMillennium”.Bonsiepe’ssecondvirtue,“Intellectuality”,calledforamorecriticalstanceindesign.Thatis,designmustrocktheboat,critique‘whatis’andimagine‘whatcouldbe’,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.Werecognisedthisasanopportunitytoworkwitha“suitablegroupofpartnersand[theopportunityto]buildwiththemasetofsharedvaluesandconverginginterests”(Manzini,2015)necessaryforsuccessfulandsustainablecollaborativedesign.Weagreedtoexploretheoverlapbetweensocialservices-typicallyprovidedbycharitiesandlocalauthorities-andtheclinicalservicesoftheNHS.Inparticular,wewishedtoinvestigatethepossibilityofclarifyingapathway(oramultitudeofpathways)forpositiveinterventionswithcarersandpeoplewithdementiaatthepre-diagnosisstage,whentheytypicallyreceivelittleornosupport.

TheNationalInstituteforClinicalExcellence(NICE)publisha“DementiaOverview”-acomprehensiveandregularlyupdatedonlinesupporttoolforusebycliniciansspecialisingindementiacare.Itoutlinesbest-practicetreatmentpathwaysandoverarchingguidingprinciplesforNHSstaffinprovidingcareforpeoplewithdementia.TheNICEDementiaPathwaydoesnot,however,provideanyassistanceforthemanypeoplewithdementiaandtheircarerswhodealwiththeconditionformanyyearsbeforeadiagnosisisestablished.Bytakingstepstoidentify,intervene,andassistcarersandpatientsearlier,theNEDAGaimtomitigateorentirelyavoidcrisesinthefuture,andtherebyrelievefinancialpressureontheirservicesaswellastheemotionaltollontheserviceusers.

Figure2.DetailoftheNationalInstituteforClinicalExcellence(NICE)DementiaOverviewonlinesupporttool.

Weproposedtoexplorethepotentialforcreatingartefactsthatinvestigatedtheexperiencesofpre-diagnosiscarersandpatientsandwhethertheirgoalsareassistedbyexistingservices.WeagreedtopilotthisprojectintwoareasoftheNorthEastofEngland.ThefirstisStockton-on-Tees,whichin2014wonrecognitionforitsworkindevelopinga“DementiaFriendlyCommunity”(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.Whipple’s(1987)CommunityofPracticemodelespousedthat“knowledgeiscreatedandnotsimplytransferredandisconsideredtobelocatedinthe‘community’ratherthantheindividual”;likewise,theseaccumulatedresponsesprovideduswithinsightsintotheindividualexperienceswhichwerethenusedasthebasisforasemi-structuredgroupdiscussionabouttheirexperiencesandconcernsuniquetotheStocktonarea.

ThisworkshopgeneratednumerousinsightsintotheexperiencesofpeopleinStockton,including:

• Ageneralsatisfactionwiththelevelofpost-diagnosissupportreceived,butfrustrationanduncertaintypriortothis.Someparticipantsexplicitlystatedthattheyfelt“lost”whenattemptingtonavigateservicesofwhichtheyhadnopriorknowledge;

• Aconsensusthatthecarersandpatientsfeeloverwhelmedanddisorientatedwhenthepatient’sneedsrequirethemtomoveoutoftheirownhomesandintostaffedcarehomes.Theprocesswasdescribedas“labyrinthine”andallpartieswhohadexperiencedthistransitionfelttheydidnothaveavoiceinthisprocess;

• Theexperiencesofsomecarerswildlydifferedfromothers,eventhoughtheyaccessedthesameorganisations;

• Thevastmajorityofcaretakesplaceinanon-medicalcontext(suchasthefamilyhome)ratherthanamedicalcontext(suchasahospital).

• Whendescribingtheirexperiences,participantsusedavocabularywhichechoedthatofaphysicaljourney.Theyfelt“lost”,theytook“wrongturns”alonga“longanddifficultroad”,andattimesfelt“trapped”.


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Figure3.Imagesoftheoutcomescreatedatthefirstworkshop.(right)Oneoftheresponsesofawomancaringforherhusbandwhohasdementia.Thisgivessomeindicationoftheissueswhichareimportanttothiscarer–forexample,theimportanceofstrongfamilyties,balancingherownhealththeneedsofherhusband,andherdesireenjoylifeoutsidethe“caringrole”.

Thisworkshopwasfollowedbyareflectioncycle(McNiff&Whitehead,2006)duringwhichtheauthorsconsideredtheoutcomesoftheworkshopandhowbesttousethemasthebasisforthesecondworkshopduetotakeplacethefollowingmonth.Duringthisperiodofreflection,wedistilledtheoutcomesintoeightdistinctgoalssharedbycarersandpeoplewithdementia.Thegoalswere:

• Tobehappy;

• Tofeeluseful;

• Tobeabletoplanahead;

• Toknowwhattheyareentitledto;

• Tofeellistenedto;

• Tochoosetolivethewaytheywished;

• Tohaveassistanceincopingwithcrises;

• Tolivehealthyandactivelives.

Thisledustoconsiderhowdementiaserviceproviders,whotypicallyhaveverynarrowremits,helppeopletofulfiltheseabstractgoals.Werecognisedaninterestingtensionbetweentheserviceproviders’approachoffocussingonveryspecificoutcomes,andthecomparativelyabstractnatureoftheabovegoals.ThistensionwasconsideredbyBurnsetalintheir2006REDPaper:

“Here,emotionalconsiderationsareequaltopracticalones,andthisdemandstheabilitytolookataproblemfromaperspectivethatmaybefundamentallydifferentfromthatofthebusiness-ownerorservice-provider.”


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Toencouragethisnewperspective,weadoptedthefamiliarvisualdeviceofatransitmapwiththeserviceuserplacedfirmlyinthecentreoftheprocess.

Figure4.Thegoalsofpeoplewithdementiaandtheircarers,visualisedaseightdistinctpathstheycouldtake.

Workshop2,23rdNovember2016

Thissecondworkshopwasattendedby18participants,eachofwhomrepresentedanorganisationprovidingsupportfordementiapatientsandorcarers.Theywerejoinedbyhusbandandwife(whowerealsoapatientandcarerrespectively),whoalsoparticipatedinthefirstworkshop.Theyrequestedtocontinuetoparticipateinthedesignprocessandgivetheirviewsontheoutcomesproducedattheworkshop.

Weaskedtheparticipantstoconsiderthemanyinterventionseachoftheirservicesprovide-frominformationleafletstodementiacafés,employmentsupporttohealthylivingadvice–andtoplacethemonthemapaccordingtothegoalstheyhelpedusersfulfil.Eachorganisationfoundthattheirdifferentinterventionsoccupiednumerouspaths,andthustheycouldidentifythatseveralorganisationsoverlappedsignificantly,withsomepursuingsimilarinterventionswithidenticalgoals.Thishighlightedspaceforpotentialcollaborationbetweentheirservices.


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Figure5.Thecompleted“InterventionsMap”.

Pre-diagnosisserviceswerehighlightedatthecentreofthemap,allowingustofocusonthesespecificinterventionswithintheirwidercontext.Itisclearthatonlyasmallproportionofdementiaservicesprovideanyassistanceatthisstage,withthevastmajoritybeing‘passive’informationgatheringservicessuchasfactsheets,ratherthanproviding‘active’planningandassistance.Thishighlightstheuntappedpotentialforprovidingassistanceatanearlierstage.

Thismappingtechniquegeneratedadenseamountofinformationwhichweareintheprocessofdecoding.Oncethisinformationisproperlyorganised,wewillofferittoserviceuserswhowillbeabletodecidewhichintervention,orcombinationofinterventions,isrightfortheirspecificneeds.Thisstandsinmarkedcontrasttothecurrentapproachwherethisinformationisheldwithinorganisationsandawayfrompublicview.

Figure6.Samplesofthespecificinterventionsavailabletocarersandpeoplewithdementiaatdifferentstagesoftheir“journey”throughdementiaservices.


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Figure7.Potentialusesforthismappingtechnique.Individualserviceuserscanseeacomprehensiveoverviewofthepotentialinterventionsavailabletothem,identifythespecificonestheywishtoengagewith,andcreatetheirownbespokepathwaysthroughthevariousdementiaservices.

FollowingtheproductionofthisInterventionsMap,wethenaskedtheparticipantstoconsiderdementiaasajourneythroughaphysicalenvironment,withamixofdangerousterrainandpleasantvistas.Theparticipantspopulatedthismapaccordingtowheretheyfelttheirservicesshouldbesituated.Someorganisationsoperateindistinctareas,whilstothers(mostnotablytheNHS)drewmultiplepointsofinterventioncoveringlargeswathesofthelandscape.

“Mapsgivetheirreadersthesimpleandmagicalabilitytoseebeyondthehorizon”(Fawcett-Tang,2008),andthiscartography,basedonamentalratherthanliteralenvironment,hasthepotentialtohelpserviceuserstoseebeyondthehorizonsoftheirownexperience,tosituatethemselveswithinanexistingframework,andtoplanwheretheycouldgonextandwhichserviceswillbebestpositionedtoprovidethemwithassistance.Weplantoproducenumerouscopiesofthismapandinviteserviceuserstodrawtheirownpathsthroughthelandscape,allowingthemtoseewheretheyhavebeenandwheretheywishtogo.

IndesigningthefeaturesoftheStockton-on-TeesDementiaLandscape(Figure8)–suchasTheDreadedFinancialSwamportheCareHomeMaze–wesoughttointroducesomelevityintoanareaofhealthandsocialcarewhichisoftencharacterisedasanunwelcomeburden.WeweremindfulofBissonandLuckner’s(1996)viewthat“funcanhaveapositiveeffectonthelearningprocessbyinvitingintrinsicmotivation,suspendingone’ssocialinhibitions,reducingstress,andcreatingasenseofrelaxedalertness.”Approachingthesedifficultissueswithasenseofplayfulnessmayfacilitatedifferentoutcomesthanthe‘crisismanagement’approachsooftenseeninhealthandsocialcare.Thetoprightcornerofthemapbearstheslogan“herebedragons”,inrecognitionthatanyartefactwecreatecannotfullyencompassthemyriadexperiencesofallserviceusers.Thisisachallengecommontoallcartography,butitmustbeacceptedthat“adistortedmentalmodelmaybebetterthannomentalmodelatall”(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,themapsofferanovelwaytovisualisetheirinterventionsinpeoples’lives,toseewheretherearegapsinthesupporttheyoffer,andtohighlightcommongroundandpotentialspacesforfuturecollaboration.Indoingso,thisprojectisasteptowardsconfronting“institutionalandprofessionalborders”(Ehn,Nilsson,&Topgaard,2014)whichmaypreventserviceusersfromreceivingtherightsupportattherighttime.Byengagingtheminacollaborative,co-designprocess,weofferedthemspaceto“jointlyexploreandarticulatetheirlatentneedsandjointlyexploreandmakesolutions”(Steed,Manschot,&DeKoning,2011)tothoseneeds.Nowthetopographyofcarehasbeenmadevisible,thereisafurtherchallengetoexplorewhetherthisresearchcanformpartofaprocessof“continuouslearningandredesigning”(Fuad-Luke,2009),orwhetheritisasinglesnapshotofalandscapethatwillinevitablyshift.

Forcarersandpeoplewithdementia,theyoffernewwaystointeractwithdementiaservices,helpthemtoplanforthefuture,andtoarticulatetheirexperiencesinnewways.Aswithallmaps,these“redescribetheworld”(Harley,2002)inwayswhichchallengetheexistingstructuresofpowerandpractice.Atthisproject’sinception,wewereaskedtoconsiderwhetherwecoulddesignapathwayforserviceusersintheveryearlystagesofdementiacare.Thesemapsreflectthelivedreality–thatthereisnosinglepathwayforeveryonetofollow–butinvitesthemtocreatetheirownpathwaystomeettheirspecificchallenges.

TheseworkshopswillberepeatedinNorthTynesideinJanuaryandFebruary2017.Oncethesemapsarecompleted,wewillbeabletodrawcomparisonsbetweenthetypeofdementiacareservicesavailableineachoftheseareas.Thismayfurtherassistserviceprovidersineachlocationtoconsidertheneedsoftheirserviceusersandthelevelofsupportthey,inturn,provide.

“Wethinkthatwe’reintheartefactbusiness,butwe’renot;we’reintheconsequencebusiness”(Chocinov,n.d.)–andthetruevalueofthesedesigninterventionscomesinwhethertheyresultinoutcomeswhicharevaluabletoallstakeholders.Wedonotproposethatthesemapsshouldreplaceface-to-facediscussions,butbeusedtoaddvaluetothemasatooltoencouragenewinsights.Wewishtoempowerdementiaserviceprovidersandtheirserviceuserstofeelabletopointtoamapandask‘andwhataboutthis…?’


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