Enhancing the lives of people with dementia. Dementia Focus Group.
in Everyday Life · In recent years there has been a proliferation of arts-based activities for...
Transcript of in Everyday Life · In recent years there has been a proliferation of arts-based activities for...
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Creativity&
Dementia
in
EverydayLife
Areportonthe‘DementiaandCreativity’Project,atUniversityofManchester.
by
SueBellass,AndrewBalmer,VanessaMay,JohnKeady,ChristinaBuse,AndreaCapstick,Lucy
Burke,RuthBartlett,AnneConnolly,JamesHodgsonandLynneChapman.
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April25th2018
AreportontheUniversityofManchesterUMRI-funded‘CreativityandDementia’project,
exploringthepotentialofabroader,criticalapproachtothestudyofdementia,creativityand
everydaylife.
InpartnershipwithManchesterCarer’sForum:http://www.manchestercarersforum.org.uk
Allsketches©LynneChapman:https://lynnechapman.blogspot.co.uk
Whoweare:
Ourteamcomprisesacademics,artistsandpractitioners.Ourworkwasinformedbyinteractionswithcarersandpeoplelivingwithdementia.Theacademicscomefromarangeofdisciplinesincludingsociology,thehumanitiesandhealthcareandarebasedatseveraluniversities(Manchester,ManchesterMetropolitan,Southampton,YorkandBradford).WehavebeenmeetingregularlysinceMarch2017todiscusshowwecanexploreandlearnmoreaboutcreativityanddementiainthecontextofeverydaylifeandartstherapy.
Furtherinformationontheauthorscanbefoundonthebackpage.
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Weproposeabroadeningofresearchandpracticeagendastobringcriticalattentiontothemyriadformsofcreativitythatoccurineverydaylifewhenlivingwithdementia.
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OurProject
Inrecentyearstherehasbeenaproliferationofarts-basedactivitiesforpeoplewithdementia.Therearemoreopportunitiesthaneverforpeoplewithdementiatoengageinvisualarts,poetry,dance,dramaandmusic,andmanyoftheseactivitieshavesignificantpositiveeffectsforpeoplewithdementia.
However,ithasbeenouraimtothinknotjustabouttheartsbutmorebroadlyabout'creativity'-whatitis,howitmightfeatureintheeverydaylivesofpeoplewithdementiaandtheirfamiliesandfriends,andhowwecanresearchit.Fromresearchwe'vedoneinthepast,we'reawarethatpeopleadapttodementiainarangeofways,forexamplebymodifyingthehome,developingwaysofhelpingpeoplewithdementiatonavigatesocialinteractions,andmakingchangestolanguageandcommunicationwhenfindingwordsbecomesdifficult.Weviewtheseadaptationsasdifferentformsofcreativityineverydaylifeandweexpectthatconductingmoreresearchoncreativityinthecontextofdementiawillunearthmanymorewaysinwhichpeoplewithdementiaandtheirfamilymembersandfriendsadapttothechangesthatdementiabrings.Inlookingatdementiainthisway,weaimtochallengeprevailingideasaboutlossanddeficit,andfocusinsteadonthewaysinwhichpeoplewithdementiaandthosearoundthemusecreativitytomaintainexistingstrengths,tobringaboutorrespondtochangesandtoembarkondevelopingnewskills.Attheheartofourapproachisanemphasisonthesimilaritiesratherthanthedifferencesbetweenpeoplewithandwithoutdementia.
Todevelopresearchintocreativityanddementia,wehavebeenmeetingforseveralmonthsinaseriesofworkshopstotryoutnewideas,methodsandtodevelopgrantapplicationstopresenttoresearchfunders.Wehavealsocapturedandpresentedourideasinanacademicarticle,publishedinDementia,aninterdisciplinaryjournal.
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Workshop1:
Workshop2:
Wemettoshareideasaboutwhatcreativityis,howcreativityfeaturesinthelivesofpeoplewithdementia,theirfamilyandfriends.Amongstotherideas,wediscussedhowcreativityfiguresintheordinaryandmundane,focusingontheeverydaylivesofpeoplewithdementia,howitisenactedinspacesandplacesofroutineinteractionandthedifficultiesinherentinmeasuringsuchcreativity.
Inthesecondworkshopweexploredpreviousresearchinthegeneralareaofcreativityanddementia,andseveralgroupmembersgavebriefpresentationsaboutdementiaandordinaryeverydaylifefromtheirperspective.Westartedworkingonideasfortwoprojects,oneontimeandbelongingandoneoncreativityineverydaylifewithdementia.
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Workshop3:
Workshop4:
Workshop5:
Wediscussedwhatkindsofmethodswemightuseinthestudies.Inthetimeandbelongingstudy,weconsideredtheuseofinteractiondiariestoexploredailyrhythmsoflife.Fortheeverydaycreativitystudy,wediscussedcreatinganonlineplatformofcreativesolutionsthatcouldbepopulatedbyandaccessedbypeoplelivingwithdementia,theirfamilyandfriends.
InthefourthworkshopwereturnedtothebelongingbidandrefinedourthoughtsandideasabouthowthestudycouldbecarriedoutwiththenoveluseoftechnologysuchasSenseCam,adevicethatiswornandtakesphotographsaspeopleengageintheirdailylife.
Inworkshopfivewefocussedontheeverydaycreativitybid,agreeingthatwewantedtostudyinstrumentalformsofcreativity,e.g.practicaladaptationstothehome,andnon-instrumentalformsofcreativitywhichwouldinvolve,forexample,thecreativeuseoflanguageandhumour.Thiswouldhelptoshowhowcreativityisskilfullyusedbypeoplewithdementia,theirfamilyandfriends,astheynegotiatechangesineverydaylife.
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Wemustdevelopanunderstandingofcreativityanddementiathatisneithergrandiosenortragic.Thatisabouthowwelive;aboutthepocketsofpossibilityineverydaylife.
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ExploringthePotentialofOurApproach
Totestandreflectonthepotentialofanapproachtocreativityanddementiathatemphasisespeople’sexistingcreativityaspartoftheireverydaylives,andtheirhopesforfuturecreativeendeavours,wefoundtwoparticipants,peoplelivingwithdementia,whohadintereststheywantedtoexplorefurther.
WemetJulie,whohadpreviouslymaintainedalarge,tropicalgarden,butwhonowlivedwithherdaughterwithoutmuchoutsidespace.WepairedherupwithpeopleatHulmeCommunityGardenCentre.Juliespentadayexploringthegardens,engagingingardeningactivities,learningabouttheCommunityGarden’sprojectsandsignedupasavolunteerforfutureactivities.
TwomembersoftheresearchteamworkedinthegardenswithJulie,herdaughter,andgardenersfromtheCentre.Wereflectedwiththemonhowcreativityhadfiguredinherlife,forexampleinhowshedesigned,tendedandadaptedthegardensaroundherhousewhenshelivedindependently.WeexploredwhatitwasliketotalkaboutcreativitywhilstgettingherhandsdirtyintheCommunityGardens,andthoughtabouthowthistypeofactivitycouldbeusedasamethodtoinformacademicresearch.
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WemetPeter,whohadpreviouslybeenaschoolteacherandhadlongwantedtofurtherdevelophisliteraryandcreativewritingskills.WepairedhimupwithJamesHodgson,acreativewriterandacademic.
PeterdevelopedhiscreativewritingtechniquesoveraseriesofmentoringsessionswithJames,wroteshortfictionforfun,andusedhiswritingtoreflectonhisexperienceoflivingwithdementia,people’sinteractionswithhim,andhowdementiaisunderstoodinBritishsociety.
“Peterwrotesomefantasticwork,exploringhispre-andpost-dementiaself.OnethingthatstickswithmeishowacharacterlivingwithdementiainoneofPeter’sstorieschosetochangehisnameasawayofindicatinghisembraceofanewlife.Inanotherstory,themaincharactertookphotographswhichhethenleftanonymouslyinpublicplaces,toencourageothercharacterstothinkabouttheperspectiveshehadontheworldandtorememberhim.Theywerechallengingpiecesthatshowedsophisticated,creativeexplorationoflivingwithdementiaineverydaylife.”JamesHodgson
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Weshouldseektounderstandhowtheabilitytoformasenseofbelongingisaffectedaspeople'ssenseoftimechanges
&whatrolecreativityplaysinmaintainingasenseofbelongingasthings,placesandpeoplechange.
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BroadeningtheDebateonCreativityandDementia:ACriticalApproach
Oneoutputofourprojectwasaco-authoredpublicationinDementia,aninterdisciplinaryjournalofacademicresearch,titled,“BroadeningtheDebateonCreativityandDementia:ACriticalApproach.”Thepaperreportsthatexistingapproachestocreativityinthelivesofpeoplewithdementiahastendedtofocusonhelpingthemto‘livewell’and,whilstthisisimportant,arguesthatasaresult,thecreativeworkthatpeoplegetuptointheireverydaylivesisoftenoverlooked.Thepaperproposessixdimensionsthatshouldbeconsideredinabroader,morecriticalapproachtodementiaandcreativity.Someexcerptsfromthepaperarebelow.
1)everydaycreativity
“Acriticalapproachtocreativityanddementiamightattendtothewaypeoplewithdementiaandthosearoundthemarecreativeaspartoftheireverydaylives,ineverydayspacesandplacesandinthecontextoftheirongoing,complexrelationships.Sincethemajorityofpeoplewithdementialiveathome,itisimportanttogainanunderstandingoftheseeveryday,distributedformsofcreativityifwearetobetterunderstandwhatitisliketolivewithdementia,howpeoplecopewithorembracechange,howdementiaaffectseverydaypracticesandwhatitisthatmightconstitute‘livingwell’withdementiawhensetwithinthismundanesetting.”(Bellass,etal.,2018:page11)
2)powerrelations
“Discriminatorypracticesanddifferentialaccesstoresourcesmayconstrainthecreativeagencyofpeoplewithdementia,andleadtocreativitybeingconstruedasinappropriateorrisk-takingactivityratherthanbeingrecognisedandacknowledgedasarightfulexpressionofembodiedagency,asaformoflegitimateresistanceorameansofcopingwithasituationofinequity.Acriticalapproachtostudyingcreativityanddementiaremainsmindfulofsuchpowerdynamicsandfocusesattentiononwhosecreativityisatstake,howthisisnegotiatedinthecontextofpersonalandprofessionalrelationships,andwithwhatconsequences.”(Bellass,etal.,2018:page13)
3)waystooperationalisecreativity
“Intermsofcriticalresearchintocreativity,weproposethatitispossibletotakethisastepfurther,bynotjustobservingcreativityasitemergesineverydaylife,butalsobymakinguseofparticipants’everydaypracticesasresearchmethods.Forexample,ifa
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personwithdementiacreativelyarrangesornaments,theresearchercouldusethisasaformofobjectelicitationandasaformofart,tounderstandmoreaboutsuchactionsandabouttheexperienceofdementia.Similarly,aresearchercouldidentifyandpartakeinanytraditionalcreativepracticesthattheparticipantenjoys,observingtheirsensoryengagementnotonlywiththeprocess,butalsowiththeoutputsofthecreativework.”(Bellass,etal.,2018:page14)
4)sensoryandaffectiveexperience
Avalueimplicitinmuchoftheinterventionistresearchisthatforcreativitytobeworthwhileitshouldengenderpositiveaffecttoimprovequalityoflife…Acriticalapproachtodementiaandcreativitymustrecognisethatworkingcreativelymayinspireboth‘positive’and‘negative’emotions,‘good’and‘bad’affect…Thesurfeitofhumanfeelingshouldnotbereducedforpeoplelivingwithdementiaanymorethanitshouldbeforpeoplewithoutsuchadiagnosis…‘livingwell’mightmeanmuchmorethan‘feelinggood’.Art,perhapsespeciallyamongstformsofself-expressionandpoliticalaction,ischaracterisedbyitscapacitytorepresent,examineorconjureallpartsofhumanlife.Acriticalapproachtoartsinterventionsandcreativityoffersachancenotjusttocounterbadfeelingbuttoexploreit,gaincomfortinthesharingofitwithothers,aimitappropriatelyandchallengeitssourcescollectively,and,yes,toletitgowhenpossibleandhealthy.(Bellass,etal.,2018:page14-15)
5)difference
“Inaddition,marginalisedgroupswhoexperiencetheintersectionofmorethanonetypeofdiscrimination,forexamplethosefromanethnicminorityorLGBTcommunity,arealmostentirelyoverlookedinthebodyofinterventioniststudies.Ithasbeensuggestedthatpeoplefromminoritygroupshavedelayedaccesstodementiacareservicesandalackoftailoredserviceprovision…Acriticalapproachtocreativityanddementiamustattendtodifference.Intermsofdiagnosis,stageofillness,marginalexperiences,andsoforth,themodesofcreativitywhichmightbeappropriatetoexplore,elicitordeepenwithinastudycouldchange.”(Bellass,etal.,2018:page16)
6)reciprocality
“Acriticalapproachseeksbothtocontributetounderstandingsofdementia,butalsotoexplorewhattheexperiencesofdementiacantellusaboutcreativity,socio-politicalorder,practicesandeverydaylife…Thecreativeworkexposedinthemanagementandnegotiationofchangeinthecontextofdementiaofferspotentialtoexploreeverydaylifemorebroadlyandreflectonhowwemightall‘livewell’together…usingthelensof
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dementiaitispossibletogaininsightsintohownormativecreativityisconstructedandaccountedfor,andwithwhatimpactuponhealthandillnessexperiencesandinequalities.”(Bellass,etal.,2018:page16)
Youcanaccessthepaperhere:http://journals.sagepub.com/doi/abs/10.1177/1471301218760906?ai=1gvoi&mi=3ricys&af=R([email protected])
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AuthorList
SueBellass,HealthSciences,[email protected],ORCID:0000-0001-
9383-4116.
AndrewBalmer,SociologyandMorganCentreforResearchintoEverydayLives,Universityof
Manchester,[email protected],ORCID:0000-0002-
7146-0448.
VanessaMay,SociologyandMorganCentreforResearchintoEverydayLives,Universityof
Manchester,[email protected],ORCID:0000-0003-1547-9352.
JohnKeady,SchoolofNursing,MidwiferyandSocialWork,UniversityofManchester,
[email protected],ORCID:0000-0001-8243-6913.
ChristinaBuse,DepartmentofSociology,UniversityofYork,[email protected]
AndreaCapstick,CentreforAppliedDementiaStudies,BradfordUniversity,
LucyBurke,DepartmentofEnglish,ManchesterMetropolitanUniversity,[email protected],
ORCID:0000-0002-9870-5118.
RuthBartlett,HealthSciences,SouthamptonUniversity,[email protected],ORCID:0000-
0002-3412-230.
AnneConnolly,ManchesterCarersForum,[email protected]
JamesHodgson,CreativeWriterandAcademic,Sociology,UniversityofManchester,
[email protected],ORCID:0000-0003-2327-6125.
LynneChapman,ArtistandIllustrator,[email protected]