In the moment: designing for late stage dementiapossessions, clothing, pieces of furniture and...

ThisworkislicensedunderaCreativeCommonsAttribution-NonCommercial4.0InternationalLicense.

1

Inthemoment:designingforlatestagedementia

CathyTreadawaya*,DavidPrytherchb,GailKenningc,JacFennella

aCardiffMetropolitanUniversitybBirminghamCityUniversitycUniversityofTechnologySydney*Correspondingauthore-mail:[email protected]

Abstract: This paper presents international multidisciplinary design research tosupport thewellbeing of people livingwith dementia. The LAUGH1 project aims todevelop playful artefacts that will contribute to non-pharmacological personalisedapproaches to caring for people livingwith late stagedementia in residential care.Thispaperpresentsthecontextforthisresearchandexplainstheinitialstagesofthework currently in progress. An inclusive participatory methodology is described inwhichkeyexperts including:healthprofessionals, technologists,materials scientistsandcarersofpeople livingwithdementiaare informingthedevelopmentofdesignconcepts. A positive design approach in which designing for pleasure, personalsignificance and virtue underpin the work. The initial stages of the research haveidentified the significance of: playfulness, sensory stimulation, hand use andemotionalmemory.Thispapercontendsthatdesignsshouldaimtopromote‘inthemoment’ living in order to support subjective wellbeing of people living with latestagedementia.

Keywords:Inclusivedesign,dementia,wellbeing

1.IntroductionTheWorldHealthorganisationhasidentifieddementiaasoneofthegreatesthealthchallengesfacingtheworldtoday(WHO,2012).By2050itestimatestherewillbe115.4millionpeoplewithadiagnosisofdementiaintheworld.Therapidincreaseinnumbersofpeoplelivingwiththediseasewillhaveasignificantimpactonindividuals,familiesandsocietyasawhole.Therearecurrentlyveryfewproductsdesignedspecificallytosupportthecareofpeoplelivingwithlatestagedementiawhoareoftenamongstthemostmarginalisedandneglectedmembersofourcommunities.Newapproachestothedesignof

1LAUGHisanacronymforLudicArtefactsUsingGestureandHaptics

CathyTreadaway,DavidPrytherch,GailKenningandJacFennell

2

careservicesandwaysofsupportingtheirwellbeingareurgentlyneeded(Zeisel,2013;DesignCouncil,2012;Treadaway&Kenning,2015;Treadaway,Kenning,&Coleman,2015).

Dementiaisasyndromethatencompassesarangeofneurodegenerativediseases(includingAlzheimer’s)forwhichthereiscurrentlynocure.Caringforpeoplewithlatestagedementiaisdemandingduetotheircomplexneedsandoftenwhatareperceivedaschallengingbehaviours.Additionally,therecanbegreatvariationinthewaythediseasepresentsitself,anditiswidelyknownthat‘oneperson’sjourneythroughdementiaisoneperson’sjourneythroughdementia’;therecanbeno‘onesizefitsall’whenconsideringhowtodesignforthisdemographic.Seeingtheindividuallivingwiththediseaseandbeingmindfuloftheirpersonhoodandlifeexperiencesisvitalwhentheycannolongercommunicatetheiridentityforthemselves(Zeisel,2011).

Therearebotheconomicandsocialbenefitstobegainedfromdesigningspecificallytosupportthewellbeingofpeoplelivingwithdementia.AccordingtoareportbytheKing'sFund,totalUKannualspendingondementiaisprojectedtoreach£35billionin20262.Thecosttofamiliesisbotheconomicandemotional;unrecognisedinformalcarerslookingafterafamilymemberwithdementiashoulderthemajorityofcareresponsibilities.Inresidentialcaremanyresidentsaregivenexpensiveanti-depressantandanti-psychoticdrugsinordertomanageperceivedchallengingbehaviourhowever,accordingtoAlzheimer’sSociety,theuseofthesedrugsasafirstresort,fortwothirdsofthesepeople,isinappropriate3.Researchshowsthathappypeopletakelessmedication,sufferfewerfallsandhospitaladmissions(Huppert,Baylis,&Keverne,2005).Therearetherefore,significanteconomicadvantagestoincreasingsubjectivewellbeing4forpeoplelivingwithdementiaanddesigningspecificallytopromotetheirpositiveemotions.

Fredrickson(2004)identifiesthetenmostcommonpositiveemotionsasjoy,gratitude,serenity,interest,hope,pride,amusement,inspiration,aweandlove.Positiveemotionshavebeenshowntohaveenormoushealthbenefits;laughtercanreducestress,lowerbloodpressure,decreasepain,boosttheimmunesystemandisbetterthananyantidepressant(Sternberg,2009).Thebrain’semotionalsystemshaveevolvedtoensurehumansurvival(Damasio,2000;Goleman,2004).Negativeemotionssuchasfearandhateautomaticallystimulatethebody’sflightorfightresponse.Theimpactisfeltviachangesinthebodysuchasquickenedheartrate,sweatypalmsetc.andiscapableofhijackingconsciousrationalthought(Damasio,2000).Positiveemotionssuchashappiness,joyandpeacehaveevolvedtohelpusseekopportunity,becreativeandconnectwitheachother(Fredrickson,2004).Laughteriscontagiousandsmilesoftenelicitsmilesfromothers:theyaresocially

2http://tinyurl.com/hgxfmpm3http://tinyurl.com/jgbgz6v4http://tinyurl.com/h6t67h3


3

connectingmechanismswithauniversallyunderstoodlanguagethatdoesnotrelyonspokenwordsorrationalthought.Fredrickson’sresearchhasshownthatthenaturalbiasofhumanemotionismorenegativethanpositiveandthatinordertoflourishthereisaneedtoexperiencemorepositiveemotionsthannegativeones.

Thereare,therefore,goodreasonstoinvestigatewaystodevelopandsustainpositiveemotion,particularlyforpeoplelivingwithdementiaforwhomlifeislimited,oftensedentaryandlackinginhope.Asthediseaseprogressesitaffectsexplicitmemory(recallofexperiencesandinformation)andperception,resultinginconfusion,alteredsenseofselfandrelationshipswithothers.Newapproachesareneededtocreateopportunitiesfor‘inthemomentexperience’inwhichthesensesarestimulatedandsavoured.Playfulactivitiesthatdrawonalifetime’saccruedproceduralmemoryhavethepotentialtobringludicpleasureandfun.Newwaystotapintoemotionalmemoriesthroughpersonalisationareneededtostimulateasenseof‘self’andretainaperson’sidentity.ThesearethechallengesthattheLAUGHresearchisaddressinginordertodevelopnewtypesofplayfulobjects(ludicartefacts)tosupportthewellbeingofpeoplewithlatestagedementia.

2.Memoryandemotion

2.1ThebrainanddementiaDementiaiscausedbyarangeofprogressiveneurodegenerativediseasesofthebrainresultinginmemorylossandcognitivedysfunction.Thediseasecausesthebraintoshrink;thehippocampus,theprimaryregionofthebrainassociatedwithmemory,issignificantlyaffectedandreducesinsize5.Theresultisthegraduallossofautobiographicalorepisodicmemoryoftheexperiencesthatpunctuatelife.Thebiologicalpurposeofmemoryistoinformpresentandfutureactionandsoitisnotsurprisingthatimpairedmemoryleadsnotonlytoamnesiabutalsoconfusionandfrustrationinthepresent.Recentresearchinneuroscienceimagingisilluminatingwaysinwhichthehippocampusisinstrumentalinmakingandrememberingmemories.ResearchersattheWellcomeTrustCentreforNeuroimaging,UniversityCollegeLondon,havefoundthatdamagetothehippocampusaffects‘spatialcoherence’:thewayinwhichtheworldisperceivedandrememberedin‘scenes’.Withoutthisfunctionthebrainisunabletorecallspatialmemoriessuchaslocationsorsetsofobjectswithinascenario.Itisalsoimpossibletoimagine,dream,predictornavigatespatialscenes(Zeidman,Mullally,&Maguire,2015).Nevertheless,othertypesofmemoriesareabletopersistintothelaterstagesofthedisease;theseincludeemotional(affective)memoriesandproceduralmemories(learntphysicalactivitiesthathavebecomeautomatici.e.tacitormusclememory)(Zeisel,2011).Examplesoftheseincludetheabilitytosingandrememberthewordsofsongswhenthefacilitytoconstructsentencesineveryday

5http://tinyurl.com/jr5jt8a


4

languageislostandtheabilitytoknit,althoughnottheabilitytofollowaprintedpattern.Neitherofthesememorysystemsseemstobeaffectedbyspatialfragmentationasaresultofhippocampaldamage.

2.2EmotionalmemoryEmotionsarehugelysignificantinthelayingdownofmemory.AccordingtoLeDoux,thereisnooneemotionalsysteminthebrainbutaseriesofsystemswhichgiverisetodifferentkindsofemotions(LeDoux,1998).Thesehavedevelopedforspecificevolutionarypurposesandcontrolthebasicemotions(fear,pleasure,anger)anddrives(hunger,sex,dominance,careofoffspring).Sincetheyhavedevelopedtoensurehumansurvivaltheyarelowlevel,preconsciousresponsemechanismsthataffectandcontrolthephysiologyofthebody.Forexamplefearstimulatesthefightorflightresponsepreemptingactionthroughthereleaseofchemicals,raisingheartrateandfocusingattentioninthebrain.Itisonlyafterthebodyhasenteredthe‘alert’statethatitispossibletoreflectonthebiofeedbackandconsciouslybecomeawareoftheresulting‘feeling’.Memoriesofemotionarethereforeexperiencedpre-consciouslyandonlysubsequentlyreflecteduponandrationalizedasfeelings.

Thebrainhastworegionsthathavebeenshowntobesignificantintheprocessingofmemories:thehippocampusandtheamygdala.Asexplainedintheprevioussection5.1,thehippocampusisconcernedwiththeepisodicmemoriesthatpunctuateexperience.Theseexplicitmemoriesinvolveeventsandfacts,logicandreason.Bycontrasttheamygdalaisconcernedwithimplicitemotionalmemories.Intraumaticevents,bothmemorysystemsfunctioninparallel(LeDoux,1998).Thisaccountsfortherekindlingoftheemotionalfeelingsandsometimesalsobodilyresponses,suchasincreasedheartrate,whenthesememoriesareconsciouslyremembered.

Inthelaterstagesofdementiabothlogicalandemotionalmemorysystemsaredamaged,howeveremotionalmemoriesremainintactformuchlongerandareusedtohelpmakesenseoftheworld.Consequentlyapersonmaynotrememberwhosomeoneis,buttheywillrememberhowtheyfeelaboutthem.Thisalsoappliestoobjectsandsituationsencounteredindailyliving.Objectsmayretainimportantemotionalsignificanceandstimulatemomentsofclaritywhenpastmemoriesarerevived.Attachmenttopersonalpossessions,clothing,piecesoffurnitureandplaces,resultfromtheiremotionalvalueandsignificancetothepersonlivingwithdementia.

Theheightenedsensitivitytoemotionsofpeoplewithdementiacanleadtocommunicationthatislargelyreceptiveanddependentonthemoodsofothers(Logsdon,McCurry,&Teri,2007).Althoughemotionsarefelt,thereisdifficultyinexpressingthemverbally.Thedesignimplicationsfromthisincludetheneedforalternativeformsofcommunicationandinterpretationthatencouragenon-verbalemotionalexpressionasawayofsharing,understandingandbuildingonpositivefeelingsofhappinessandcomfort.


5

2.3ProceduralmemoryAnotherimplicitmemorysystemlinkedwiththeamygdalaisproceduralmemory.Thiscanbedescribedashard-wiredbodyknowledgethatistacitresultingfromyearsofrepetitiveaction.Skillsthathavebeenpracticedconsistentlyuntiltheyhavebecomeautomaticsuchasplayingamusicalinstrument,practicingacraftorfoldinganapkinareretainedasimplicitproceduralmemories.AccordingtoSennettittakes10,000hoursofpracticeforaskilltobecomeautomatic(Sennett,2008)butonceitbecomesimplicit,theskillcanprovidepleasurebyinducingstatesofflow,competenceandabsorption.

Designsforpeoplewithlatestagedementianeedtofocusonwaysofrekindlingimplicitmemories,bothemotionalandprocedural,andavoidplacingcognitivedemandsontheuser.Byunderstandingaperson’slivedexperienceandfocusingontheirattachmentstoobjectsandactivities,itispossibletoenablepleasurable‘inthemoment’experiencesthatreinforcepositiveemotions.Dexterousskillslearntthroughoutlifebyapersonwithdementiamayprovideinsightsintodevelopingnewwaysofinteractingwithplayfulobjects,buildingonproceduralcompetenciesusinggestureandhaptictouch.

3.HanduseandHapticsRecentstudiesofhand-basedactivitieswithpeopleinthelaterstagesofdementiashowthatwhilsttheircognitivecapabilitiesmaydecline,tactualsensoryinputremainseffectiveandrewarding,(Ballesteros&Reales,2000).Engagementinthephysicalactivitiesofdailylivingdevelopstactualskillsandemotionalpreferencesthatarehardwiredintobrainstructuresandneurologicalpathwaysfrombirth(Csikzentmihaly,M,2001;Duchaine,CosmidesandTooby,2001;Wilcock,A.,1993).Evidencehasshownthattactualhandbasedmotorcontrolremains‘comparativelyspared’,eveninadvancedcasesofdementia,(Thompsonetal,2003)subjecttoothermedicalconditionsthatmaybepresent.

Motivationandtheabilitytoperformactivitiesareinterconnected(Kielhofner&Burke,1980).White’s‘CompetenceTheory’(White,1959)statesthat“anintrinsicneedtodealwiththeenvironmentseemstoexistandsatisfaction(thefeelingofefficacy)isderivedfromit”.Ryan&Deci’s(2000)‘Self-determinationTheory’,statesthateverypersonhasaninnatedrivei.e.aninternalorself-motivationtobecomegood(competent)atsomething,whichwhenachieved,enhancesoursubjectivewellbeingandincreasestheintrinsicmotivationtorepeatthistask.Thisisfurtherenhancedwhenaperson’s“humantendencytowardslearningandcreativity”iscapitalised(Ryan&Deci,2000).Asability/competencetosuccessfullycompleteaparticulartask/activitydecreases,thereisaneedtostrivetobecomegoodatanotheractivity.Therefore,toensurethepsychologicalwellbeingofpeoplewithadvanceddementia,activitiesthatareachievableandappropriateforthemareneeded.Thosethatfosterandutilisethesefundamentalbiologicaldrivesofmotivationandrewardhavethepotentialtore-channelthenegativeagitatedbehaviourfrequentlyseenin


6

peoplewithdementiaintoamorepositive,emotionallyrewardingandplayfulactivity(Cosmides&Tooby,2000).

Ameditativeapproachthatfocusesthepersonlivingwithdementia’sattentionontheimmediatemomentofhapticexperienceandtactualsensationaremoreappropriatethanthosethatinvolvecognitivestimulation.Previousstudieshaveobservedimprovingfeelingsofwellbeingthroughhapticexperientialpleasure,whichappearstofosterincreasedattentionalfocus(Prytherch,D.&Jerrard,R.2003)andinparticularforpeoplelivingwithdementia(TreadawayandKenning2015).Iftheactivityisshared,thismayalsoassistthedevelopmentofadeeperpersoncentredrelationshipbetweenpeoplelivingwithdementiaandtheircarers,andpeers.

Agitatedbehaviourexhibitedbypeoplelivingwithdementiaisoftenaconsequenceofalackofstimulationandmeaningfulactivity(Brooker&Duce,2000).Kong,Evans&Guevara(2009)carriedoutasystematicreviewandmeta-analysisofnon-pharmacologicalinterventionsforpeoplewithdementiawhohaveagitatedbehaviours.Thisreviewincludeddatafromsensoryinterventions,socialcontact,activities,environmentalmodification,caregivertraining,combinationtherapyandbehaviouraltherapyandfoundthatonlysensoryinterventionshadastatisticallysignificanteffectonreducingagitation.Woods,Beck&Sinha(2009),suggestedthattherapeutictouchwasbeneficialbothforsymptomsofmotor-restlessnessandforstressreduction.

Woodsetal(2009)wereunabletosuggestamechanismtoexplainwhytherapeutictouchwasbeneficial.Itisevidenthowever,thattherapiesthattapintosensoryandmotorfunctioningaremosteffective,andindicativeofabiologicalbasis.AstudybyThompsonetal.(2003)monitoredthelossofgreymatterinthebrainasAlzheimer’sdiseaseprogresses.Theirfindingsreveallossesoccurinthetemporalandparietalregionsandlimbiccortices,spreadingtothefrontalcortexasthediseaseadvances.Findingsfromthestudyindicatethatprimarymotorandsensoryareasare“comparativelyspared”eveninadvancedAlzheimer’sdisease.Thissuggeststhattherapies/activitiesforpeoplewithadvanceddementiaaremorelikelytobebeneficialiftheyutilisemotorandsensoryfunctionsofthebrain.

Insummary,well-designedproductsforpeoplewithlatestagedementiarequirelimitedcognitiveeffort,provide:fun,playfulnessandsurprises,thefacilitytoeasilychoosewhetherornottoengageintheactivity,andifsoforhowlong.Arepetitivetouchactivityincorporatedintodesigns,inordertochannelmotor-restlessnessbehaviour,wouldencourageandreward‘inthemoment’activitytherebyfulfillingtheinnateneedforoccupation,self-determinationandcompetenceviaplay.


7

4.PlayfulnessandsensorystimulationActivitiesthatstimulatepositiveemotionsarecreative,openandplayful.Theybringpleasurebyreducingstress;theyarewithoutfixedgoalsorrewardsandencourage‘inthemomentliving’.Itis‘playful’or‘ludic’playingthatisopenendedandfun-filled,thatstimulatespositiveemotionandenhancessubjectivewellbeing(Woodyer,2012).Playfulplay,however,isalltoooftenconsideredtobethepreserveofchildrenandaslifeprogresses,boththeopportunitiestoplayandtheself-grantingofpermissiontoplaydiminish(Rogersonetal2013).Whenludicplaystimulatespositiveemotionitisevidencedextrinsicallyinbehavioursthatcontributetosociability,suchassmilingandlaughter.Theseactsofreciprocityarehardwiredinthebrainforthepurposeofestablishingsocialconnectedness,affiliationandfriendship(Dissanayake,2000).

Opportunitiesforsociallyacceptableludicplaycanbelimitedinadultlife.Playisoftenviewednegativelyas‘larkingaround’and‘childish’andadultswhoengageinsillyorfrivolousbehavioursareoftenconsideredsociallyirresponsible(Kane,2005).Thisnegativebiastowardsadultplayfulnessisreflectedinthereluctancetoacceptthenotionof‘play’orconceptof‘toys’forpeoplewithdementia.Theuseoftheterm‘toy’maybecontentiousduetoitsassociationwithchildhood,orconsideredinfantilizinganddetrimentaltothedignityofapersonwithdementia.Despitethenegativeconnotations,thereisagrowingbodyofresearchevidencetoindicatethatplayfulobjects,suchasdollsandsofttoys,bringmuchpleasureandareabletocomfortandsoothepeoplelivingwithlatestagedementia(Mitchell&O'Donnell,2013).Alltoofrequentlyitisthecarersandfamilymemberswhoaremostresistanttotheideaofplayandtheuseoftoysinresidentialcare.Thisattitudeisbeginningtochangeastheirtherapeuticbenefitsarerecognisedbythoseworkinginthesector.Nevertheless,thereislittlepublishedempiricaldatatosupportthosecarerswhohavewitnessedthepositiveaffectofplayfulobjectsonpeoplelivingwithdementia,includingreductionintheneedformedication,fewerfallsandlessagitatedbehaviour.Therearealsocurrentlynopublishedguidelinesendorsedbygovernment(Mitchell2015).TheLAUGHresearchdiscussedinthispaperaimstocontributenewplayfulobjectsandevaluatetheirpotentialtoprovideanon-pharmacologicalapproachtothecareofpeoplewithlatestagedementia.

Previousresearchbytheauthorshasalreadyidentifiedthebenefitsofplayfultextileartefactsinthecareofpeoplewithlatestagedementia(Treadawayetal.,2015).Thesetextileshavebeendesignedspecificallytoencourage‘inthemoment’hapticexperiencewithinterestingtextures,fabricsandthreads,aswellasbuttons,zipsandpoppersdesignedspecificallyforludicfiddlingandfidgeting(Fig.1).Eachtextileisbespoke,designedaroundanindividualpersonwithdementia’slifehistoryandpersonalpreferences.Theadditionofembeddedelectronicshasenabledfurtherpersonalisation,forexampletheinclusionofanembeddedMP3playercontainingfavouritemusic.Simpleintuitivehapticelectronicinterfacesalsofacilitateextendedsensoryfunctions.Forexample,inoneofthetextiles


8

simplemetal(clothes)buttonsfunctionascontrollerstoplayfullyselectavarietyofbirdsongaudiofileswhichareplayedthroughasmallspeakerembeddedinthetextile.

Figure1Textilefor‘inthemoment’tactilestimulationdesignedtosupportthewellbeingofapersonwithlatestagedementia.

Evaluationofthetextilesindicatesthattheyareabletoreducestress,promotepositiveemotionandencouragesocialplay(Treadaway&Kenning,2015).Thesignificantaspectoftheseobjectsisthattheyareconcernedwith‘inthemoment’experience.Nocognitiveskillisrequiredtoactivatethemandtheircarefullydesignedmaterialpropertiesstimulateavarietyofsensesincludingsight,touch,soundandsmell.Asobjectstoshare,theyareabletobrokernon-verbalinteractionandemotionalcommunicationsbetweenpeoplelivingwithdementiaandtheircarerswhenverbalcommunicationisdifficultorhasbeenlostduetotheprogressionofthedisease.

5.MethodologyOverthelastthreeyearsaseriesoffundedresearchprojects-‘MakingaDifference’,‘DementiaAprons’and‘Sensore-Textiles’-havebeenundertakenbyCARIAD6researchersinordertoscopetheneedfortheLAUGHresearchandtodevelopnetworksofexpertstoparticipateinit(Treadaway,Kenning,&Coleman,2014).PartneredbyGwaliaCyf,oneoftheleadingprovidersinSouthWalesofresidentialcareforpeoplelivingwithdementia,andsupportedbythreeleadingcharities:Alzheimer’sSociety,AgeCymruandDementiaPositive,theLAUGHprojectnowhasadatabaseofover90participantsincludinghealthprofessionals,carers,familymembersofpeoplelivingwithdementia,materialsexperts,

6CentreforAppliedResearchinInclusiveArtandDesign,CardiffMetropolitanUniversity


9

computerscientists,designersandengineerswhoarecontributingtheirtimeandexpertisetotheproject.TheCARIADteamisjoinedbyacademicsfromUniversityofTechnologySydneyandBirminghamCityUniversitywithexpertiseincreativity,craft,technologyandhaptics.

Theresearchmethodologyislargelyqualitative,participatoryandinclusive(Blessing&Chakrabarti,2009;Krippendorff,2006).Dataisgatheredfromaseriesofcasestudies,semistructuredinterviews,practicalparticipatoryworkshopsandpost-hocexpertreview.Participantsincluderesearcherswhoobserve,journalandreflectontheirexperiencesandtheexperiencesoftheotherparticipants.TheworkshopsarevideoandaudiorecordedsimultaneouslyonfourvideocamerasintheUserCentredDesignLabattheNationalCentreforProductDesigninCardiff,UK.VideomaterialislateranalysedusingNoldusObserverXTsoftwareandalignedtothemesidentifiedfrompreviousresearchandcurrentliteratureinthefield.Inaddition,therecordingsareanalysedforemergentthemesarisingfromeachworkshop.

Thispaperfocusesononecomponentofthebroaderresearchreportingonfindingsfromoneofthreeparticipatoryworkshopsthatwillinformthedesigndevelopmentstageofthework.Thesubsequentiterativeprototypingand‘livelab’evaluationphasesoftheresearchwillincludepeoplelivingwithdementiainGwaliaresidentialcare.

5.1PersoncentredandpositivedesignTheapproachtothedesignofhighlycustomisedludicartefactsforpeoplewithdementiainthisworkalignswiththeperson-centredapproachesprevalentinthetheoryandpracticeofcareforpersonswithdementia(Chenowethetal.,2014;Chenowethetal.,2009).Theseapproachesrecognisethepersonhoodofeachindividual(Kitwood,1997),associalbeingstobetreatedwithdignityandrespect,andtheneedtodesigntopromotepositiveemotion.Importantly,suchapproachesrecognisethattobeeffective,designingfortheindividualmustalsotakeintoaccountthecommunityofstakeholdersinvolvedinthecare;familymembers,caregivers,healthcarestaff.Bytakingaparticipatoryandinclusiveapproacheachparticipantcanmakeavaluablecontributiontoinformthedesignofartefactsforpeoplewithlate-stagedementia(Hughes,2014).PositiveDesign,anapproachthatfocusesspecificallyondesigningtopromotepositiveemotions,underpinstheLAUGHresearch(Desmet&Pohlmeyer,2013).Thisdesignmethodology,rootedinPositivePsychology,identifiesthreekeyconstituentswhendesigningtosupportpositiveemotion:pleasure,personalsignificanceandvirtue.

5.2DatacollectionandanalysisAtotalof25participantscomprising:expertsindementiacare,occupationaltherapists,managers,dementianurses,representativesfromAlzheimer’sSocietyandAgeCymru,designers,andtechnologistswerebroughttogetherforaparticipatoryworkshoptoexplorehanduseandplayfulnessinrelationtodementia(Fig.2).Thethree-hourworkshopwas


10

dividedintothreeone-hoursessions,eachwithapracticalactivityfollowedbyagroupdiscussion.Activitiesincludingbreadmaking,clappinggamesandsimplecraftswereusedtostimulatediscussionaroundthethemesandenabledparticipantstosharetheirexpertknowledgeincaringforpeoplewithlatestagedementia.Theseparticularactivitieswereselectedinordertofocusparticipants’attentiononmanualdexterity,hapticresponsesandplayfulnessasthesehadbeenidentifiedassignificantareasforinterrogationfromtheauthors’previousresearchandcontextualreview(TreadawayandKenning2015;Treadawayetal2014;Killick,2013).Adifferentmemberoftheresearchteamledeachpartoftheworkshopandparticipantswereencouragedtosharetheirthoughtswhilstengaginginthepracticalactivities.Thediscussionswerevideorecordedandparticipantswerealsogivensimpledigitalcubecamerastodocumentthesessionthemselves.Fromthisdata,recurrentthemeswereidentifiedandtaggedtoprovideaframeworkusedlaterforthematicanalysisoftheaudiotranscription.

Figure2Breadmaking,LAUGHWorkshop1

6.LAUGHworkshopTheparticipatoryworkshopprovidedinsightsandpracticalknowledgeaboutdementiacarethroughanexperientialreflectiveprocessofinvolvementinpracticalactivities.Participantswereexpertswhoeitherworkdirectlywithpeoplewithlatestagedementiaorarecloselyconnectedwiththeircare.Activities(breadmaking,clappinggamesandmakingsimpletoys)wereselectedfortheirpotentialtorevealinsightsaboutmanualdexterity,haptictouchandtheimplicationsofmemoryimpairmentonhanduseforpeoplelivingwithlatestagedementia,whoareoftensedentaryorbedbound.Participants’reflectionsontheactivitiestookplaceduringandaftereachsessioninaroundtablediscussion.


11

6.1BreadmakingTheparticipantswereguidedthroughthepracticalactivityofmakingbreadinordertoelicitpersonalreflectionsonhanduseandhaptics(Fig.2).Thefeeloftheflourinthebowl,thesmellofthedoughoncethewaterhadbeenadded,thewarmthexperiencedduringthekneadingprocessallcontributedtoafeelingofpleasurefromthesensoryexperience.Thekneadingprocessquicklybecamerepetitiveandrhythmicasparticipantsstoppedchattingandbecameabsorbedinthetask.Commentsfromtheparticipantsduringtheactivityhighlightedthewaysinwhichtheactivitystimulatedpleasurablememories–somelongpast.Otherscommentedonhowthekneadingprocesswasatacitskillandtheywereabletocontinuehappilywhilstthinkingaboutotherthings.Researchersobservedthattheactivitybecamemoreenergeticonceparticipantshadtheirownpieceofdoughandbecameintrinsicallymotivatedtocompletetheactivity.Keyfindingsfromthisworkshopsessionindicatetheimportanceofdesigningforimmersive7occupation,self-determinationinthechoiceofactivityandcompetenceinundertakingtheplayfulexperience.Dexterousactivitiesproviderhythmic,calmingandsoothingengagementthatisabsorbinganddistracting;thesensesarestimulatedandthefocusofattentionis‘inthemoment’.Duringthediscussionparticipantscontributedanecdotesconcerningtheirpositiveexperiencesofundertakingcookingactivitieswithpeoplelivingwithdementia.

6.2ClappingGamesDuringthispartoftheworkshopmusicwasplayedandparticipantswereencouragedtorespondwithclappinggames(Fig.3).Someparticipantsconsciouslydrewontheirmemoriesofgamesplayedaschildrenwithassociatedrulesofengagement(e.g.whoshouldtakethelead);mostinstinctivelybeganclappingandmovingtotherhythmsco-operativelywiththeirpartners,drawingonmemoriesthroughdoingtheactivityratherthanthinkingaboutit.Althoughtherewassomediscussion,mostpeoplesimplygotinvolvedintheactivity.Therewasagreatdealoflaughterandsmilingamongstthemajorityofthoseinvolved.Oneparticipantwasreluctanttoparticipateandremovedhimselffromthegroup.Genderdifferenceswereobservedintheapproachestakentotheactivity.Themaleparticipantswereslowertoengage,maintainingthatonlygirlsplayedclappinggamesaschildren.Nevertheless,theybegantoplayamoreaggressiveandcompetitiveclappinggamerememberedfromchildhoodcalled‘Crocodiles’.Themusicplayedduringtheactivitywasfoundtobeenergizingandhelpedtostimulateasenseofimmersionandflow.Physicalmovementsinspiredchildhoodmemoriesandtheneedtofollowapartnerproducedbodilyattunementresultinginsocialconnectionthatwasevidencedinsmilingandlaughter.Thisactivityhighlightedseveralimportantdesignconsiderationsincluding:thepotentialforbothinclusivityandexclusion,thesignificanceofmusicandrhythmandtheroleofpre-definedrulesinshortcuttingaccesstofunandplay.

7deeplyinvolvingthesenses


12

Figure3Clappinggames

6.3SimpletoymakingThefinalpartoftheworkshopwasdevotedtomakingsimpletoys:apaperfortune-teller,awhizzydiskandsimplecard-weavingspiral.Thecraftingprocessrequiredbasicskillsoffoldingandcuttingandeverydayfamiliarmaterials:paper,woolandcardboard(Fig.4).

Participantsimmediatelybegantoreminisceaboutchildhoodgamesand,althoughtheywereunabletorememberthenames,theywereabletodescribetheactivitiesusinghandgestures.Memoriesofhowtoconstructthetoysevolvedthroughthemakingprocess-bydoingratherthanthinkingandplanning.Participantsalsoexpressedparticularenjoymentderivedfromthecombinedactivityofmakingtheobjectthenplayingwithit.

Discussionfollowingthissessionindicatedtheneedtoconsiderdesigningforthesocialaspectsofplay.Theactivityhighlightedtheintrinsicrewardgainedfrommakingatoyindividuallyandthenbeingabletosharethegamesociallyandenjoythe‘inthemomentexperience’ofplay.Handuse,gestureandhapticswereagainshowntobesignificantinthisactivityandmemorieswererekindledthroughproceduralratherthansemanticmemory.


13

Figure4Afortune-tellerpapertoy

7.DiscussionandfutureworkThekeyfindingsfromthisworkshopwerethatparticipants:

• Wereabletorecognisewhat‘inthemoment’funandjoyfeltlikeasaresultofpersonallyengaginginactivitiesthatwerefunandinvolvedhand-use;

• Recognisedtheimportanceof‘inthemoment’activitiesthatareplayfulandengagethesenses;

• Wereabletotranslatetheirownexperiencesofexploringmemory,hand-useandplayfulnessthroughtheirknowledgeofworkingwithpeoplewithdementiaintoinformationthatcandirectlyinformdesignconsiderationswhendesigningforpeoplelivingwithlatestagedementia.

Workshopparticipants’personalandprofessionalexperiencesconfirmedthat‘inthemoment’activitiesthatare:playful,involvehanduseandengagethesenses,contributetobuildingpositiveemotions.Theroundtablediscussion-followingtheactivities,confirmedthetheorythatthethreekeythemes:memory,hand-useandplayfulness,aresignificantdesignconsiderationswhendesigningforpeoplelivingwithlatestagedementia.Subsequentplannedparticipatoryresearchwillexaminepositiveemotionandemotionalmemoryingreaterdepth.Thiswillhelptoinformwaysofdesigningtopersonalisedesignsinordertostimulateastrongersenseof‘self’forapersonlivingwithlatestagedementiaandcommunicatetheirpersonhoodtoothers.Focusonemotionalmemory,whichisretainedeveninthelaterstagesofthedisease,mayprovidesignificantdesignopportunities.A


14

greaterunderstandingofhowtostimulateemotionalmemoriesthatarepositiveandengagingforapersonlivingwithlatestagedementiawillberequired.

Fun,pleasureandplayfulnessinrelationtoemotionalmemory,andcraftingandmakinginrelationtoproceduralmemory,willbeexploredinthenextstageoftheresearchviatwofurtherparticipatoryworkshops.Thiswillbefollowedbyaseriesofiterativedesigndevelopmentworkshopsthatwillexploreappropriateforms,materialsandtechnologies.Peoplelivingwithdementiawillbeinvolvedinthedevelopmentandevaluationofthedesignprototypesthroughaseriesof‘livelabs’involvingresidentsintheprojectpartner’scarehomes.Duetothevulnerabilityandcommunicationchallengesofpeoplelivingwithlatestagedementia,carestaff,healthprofessionalsandfamilymemberswillcontributetheirexpertisethroughoutthedesigndevelopmentandevaluationphasesoftheresearch.

Acknowledgements:ThisresearchissupportedbyanAHRCStandardGrantRef:AH/M005607/1;wewouldliketoacknowledgeourprojectpartnerGwaliaCyfandaregratefulforthesupportandparticipationofAlzheimer’sSociety,DementiaPositiveandAgeCymruinthisresearch.

8.ReferencesBlessing,L.T.M.,&Chakrabarti,A.(2009).DRM,aDesignResearchMethodology:Springer.Brooker,D,&Duce,L.(2000).Wellbeingandactivityindementia:Acomparisonofgroup

reminiscencetherapy,structuredgoal-directedgroupactivityandunstructuredtime.AgeingandMentalHealth,4,354-358.

Chenoweth,Lynn,Forbes,Ian,Fleming,Richard,King,Madeleine,Stein-Parbury,Jane,Luscombe,Georgina,...Brodaty,Henry.(2014).PerCEN:aclusterrandomizedcontrolledtrialofperson-centredresidentialcareandenvironmentforpeoplewithdementia.InternationalPsychogeriatrics.

Chenoweth,Lynn,King,Madeleine,Jeon,Yun-Hee,Brodaty,Henry,Stein-Parbury,Jane,Norman,Richard,...Luscombe,Georgina.(2009).Caringforageddementiacareresidentstudy(CADRES)ofperson-centredcare,dementia-caremappingandusualcare.LancetNeural,8,317-325.

CosmidesL,ToobyJ.(2000)EvolutionaryPsychologyandtheEmotions.In:LewisM,Haviland-JonesJM,eds.HandbookofEmotions.2nded.NY:Guilford;2000:91–115.

Csikszentmihalyi,M.,(2001)Motivationandcreativity:Towardasynthesisofstructuralandenergisticapproachestocognition.NewIdeasinPsychology,6,(2),pp159-176

Damasio,A.R.(2000).Thefeelingofwhathappens:bodyandemotioninthemakingofconsciousness.London:W.Heinemann.

DesignCouncil.(2012).Livingwellwithdementia.London:DesignCouncilUK.Desmet,P.M.A.,&Pohlmeyer,A.E.(2013).Positivedesign:Anintroductiontodesignforsubjective

well-being.Internationaljournalofdesign,7,5-19.Dissanayake,Ellen.(2000).Artandintimacy:howtheartsbegan.Seattle,Wa:Universityof

WashingtonPress.Duchaine,B.,Cosmides,L.&Tooby,J.,(2001).Evolutionarypsychologyandthebrain.Current

OpinioninNeurobiology,11,pp.225–230.Fredrickson,B.L.(2004).Thebroadenandbuildtheoryofpositiveemotions.ThePhilosophical

TransactionsoftheRoyalSociety,359,1367-1377.


15

Goleman,Daniel.(2004).Emotionalintelligence,whyitcanmattermorethanIQ&Workingwithemotionalintelligence:[Omnibus].London:Bloomsbury.

Hughes,JulianC.(2014).Howwethinkaboutdementia:personhood,rights,ethics,theartsandwhattheymeanforcare.London:JessicaKingsleyPublishers

Huppert,FeliciaA.,Baylis,N.,&Keverne,B.(2005).Thescienceofwell-being.Oxford:OxfordUniversityPress.

Kane,Patrick.(2005).Theplayethic:amanifestoforadifferentwayofliving.London:Pan.Kielhofner,G.&Burke,J.P.,1980.AModelofHumanOccupation,Part1.ConceptualFrameworkand

Content.AmericanJournalofOccupationalTherapy,34(9),pp.572–581.Killick,J.(2013).Playfulnessanddementia:apracticeguide.London:JessicaKingsleyPublishers.Kitwood,T.M.(1997).Dementiareconsidered:thepersoncomesfirst.BuckinghamEngland;

Philadelphia:OpenUniversityPress.Krippendorff,Klaus.(2006).Thesemanticturn:anewfoundationfordesign.BocaRaton:CRC/Taylor

&Francis.LeDoux,JosephE.(1998).Theemotionalbrain:themysteriousunderpinningsofemotionallife.

London:Weidenfeld&Nicolson.Logsdon,R.G.,McCurry,S.M.,&Teri,L..(2007).Evidence-BasedInterventionstoImproveQualityof

LifeforIndividualswithDementia.AlzheimersCareToday,8(4),309-318.Mitchell,G.&O'Donnell,H.(2013).Thetherapeuticuseofdolltherapyindementia.BritishJournalof

Nursing,22(6),329-334.Mitchell,G.2015Dolltherapyindementiacare;PresentationatDementiaCongress,Telford,UK.3-5

November2015Prytherch,D.&Jerrard,R.,(2003).Haptics,theSecretSenses ;thecovertnatureofthehapticsenses

increativetacitskills.InEurohaptics2003.Dublin:TrinityCollege,pp.384–395.Rogerson,R.,Treadaway,C.,Lorimer,H.,Billington,J.,&Fyfe,H.(2013).PermissiontoPlay:taking

playseriouslyinadulthoodAHRCConnectedCommunitiesReports(pp.11).Swindon:AHRC.Ryan,R.M.&Deci,E.L.,(2000).Self-determinationtheoryandthefacilitationofintrinsicmotivation,

socialdevelopment,andwell-being.TheAmericanpsychologist,55(1),pp.68–78.Availableat:http://www.ncbi.nlm.nih.gov/pubmed/11392867

Sennett,Richard.(2008).Thecraftsman.London:AllenLane.Sternberg,EstherM.(2009).Healingspaces:thescienceofplaceandwell-being.Cambridge,Mass;

London:Belknap.Thompson,P.M.etal.,2003.DynamicsofGrayMatterLossinAlzheimer’sDisease.Journalof

Neuroscience,23(3),pp.994–1005.Treadaway,C.&Kenning,G.(2015).ProceedingsoftheTheThirdInternationalConferenceonDesign

Creativity(3rdICDC).PaperpresentedattheTheThirdInternationalConferenceonDesignCreativity(3rdICDC),IndianInstituteofScience,Bangalore,India.

Treadaway,C.Kenning,G,&Coleman,S.(6-10thOctober2014).DesigningforPositiveEmotion:ludicartefactstosupportwellbeingforpeoplewithdementia.PaperpresentedattheColorsofCare:9thInternationalConferenceonDesignandEmotion,Bogota,Colombia.

Treadaway,C,Kenning,G,&Coleman,S.(2015).ProceedingsoftheThirdEuropeanConferenceonDesign4Health2015,13–16July.PaperpresentedattheDesign4HealthEuropeanConference2015,Sheffield,UK.


16

Wilcock,A.,(1993).ATheoryoftheHumanNeedforOccupation.OccupationalScience:Australia,1(1),pp.17–24.

White,R.W.(1959).Motivationreconsidered:Theconceptofcompetence.PsychologicalReview,66(5),pp.297–333.

WHO.(2012).Dementia:APublicHealthPriority.UK:WorldHealthOrganisation.AlzheimersDiseaseInternational.

Woods,D.L.,Beck,C.&Sinha,K.(2009).Theeffectoftherapeutictouchonbehavioralsymptomsandcortisolinpersonswithdementia.ForschKomplementmed,16(3),pp.181–189.

Woodyer,T.(2012).LudicGeographies:notmerelychild'splay.GeographyCompass,6(6),313-326.Zeidman,P.,Mullally,S.&Maguire,E.A.(2015).Constructing,Perceiving,andMaintainingScenes:

HippocampalActivityandConnectivity.CerebralCortex,25(10),3836-3855.doi:10.1093/cercor/bhu266

Zeisel,J.(2011).I'mStillHere:CreatingabetterlifeforalovedonelivingwithAlzheimer's:Piatkus.Zeisel,J.(2013).Improvingperson-centredcarethrougheffectivedesign.GENERATIONS–Journalof

theAmericanSocietyonAging,37(3),45-52.

AbouttheAuthors:

Cathy Treadaway is Professor of Creative Practice at CardiffMetropolitan University and a founder member of the Centre forApplied Research in Inclusive Arts and Design (CARIAD). She isPrincipal Investigator on the AHRC LAUGH design for dementiaresearchproject.

David Prytherch is Co-Investigator on the AHRC LAUGH design fordementia research project. He is a glass engraver/sculptor, SeniorResearcher in Haptics at Birmingham City University and CourseDirectorfortheMAinArts,WellbeingandMindfulness.

Gail Kenning is International Co-Investigator on the AHRC LAUGHdesign for dementia researchproject. She is an artist, designer andresearcher at University of Technology Sydney and Design UnitedVisiting Research Scholar at University of Technology Eindhoven,Netherlands.

Jac Fennell is Research Assistant on the AHRC LAUGH design fordementia research project, Cardiff Metropolitan University. SheholdsanMAinInteractionDesignfromtheRoyalCollegeofArtandaPhDinDesignfromGoldsmiths,UniversityofLondon.

Date post:	25-May-2020
Category:	Documents
Upload:	others
View:	2 times
Download:	0 times

In the moment: designing for late stage dementiapossessions, clothing, pieces of furniture and...

Documents