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.

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(orcontactandrew.balmer@manchester.ac.ukforapre-printcopy)

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AuthorList

SueBellass,HealthSciences,UniversityofYorksue.bellass@york.ac.uk,ORCID:0000-0001-

9383-4116.

AndrewBalmer,SociologyandMorganCentreforResearchintoEverydayLives,Universityof

Manchester,UniversityofManchesterandrew.balmer@manchester.ac.uk,ORCID:0000-0002-

7146-0448.

VanessaMay,SociologyandMorganCentreforResearchintoEverydayLives,Universityof

Manchester,Vanessa.May@manchester.ac.uk,ORCID:0000-0003-1547-9352.

JohnKeady,SchoolofNursing,MidwiferyandSocialWork,UniversityofManchester,

John.Keady@manchester.ac.uk,ORCID:0000-0001-8243-6913.

ChristinaBuse,DepartmentofSociology,UniversityofYork,christina.buse@york.ac.uk

AndreaCapstick,CentreforAppliedDementiaStudies,BradfordUniversity,

A.J.Capstick@bradford.ac.uk.

LucyBurke,DepartmentofEnglish,ManchesterMetropolitanUniversity,L.Burke@mmu.ac.uk,

ORCID:0000-0002-9870-5118.

RuthBartlett,HealthSciences,SouthamptonUniversity,R.L.Bartlett@soton.ac.uk,ORCID:0000-

0002-3412-230.

AnneConnolly,ManchesterCarersForum,anne@manchestercarersforum.org.uk

JamesHodgson,CreativeWriterandAcademic,Sociology,UniversityofManchester,

james.hodgson-2@manchester.ac.uk,ORCID:0000-0003-2327-6125.

LynneChapman,ArtistandIllustrator,contact@lynnechapman.co.uk