bangor university doctor of philosophy reminiscence and ... · before turning to approaches that...
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Bangor University
DOCTOR OF PHILOSOPHY
Reminiscence and digital life story work for dementia care
O Philbin, Laura
Award date:2019
Awarding institution:Bangor University
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1
PRIFYSGOLBANGOR
BANGORUNIVERSITY
Reminiscenceanddigitallifestoryworkfordementiacare
LauraO’Philbin
ThesissubmittedtotheSchoolofHealthcareSciences,BangorUniversity,in
fulfilmentforthedegreeofDoctorofPhilosophy
March2018
2
Summary
Theoverallobjectiveofthisthesisistomakeanoriginalcontributiontoliteratureand
practiceonthetopicofreminiscenceandlifestoryworkforpeoplelivingwithdementia
andtheircaregivers.Theseapproachesarepopularinpracticeandconsideredimportant
byexperts,butthereisstillanuncertainevidencebase.
Chapter2isasystematicreviewandmeta-analysisofreminiscencetherapyfordementia,
inwhichsomepositivebutinconsistenteffectsofreminiscenceonqualityoflife,
communication,cognition,anddepressedmoodhavebeenidentified.Theseeffectsvary
acrossinterventionmodalityandsetting.
Chapter3presentsaqualitativeexplorationofuserexperiencesofthreedifferent
implementationsofadigitallifestoryworkintervention.Qualitativeinterviewswere
carriedoutwithpeoplewithdementia,familycaregivers,andcarestaff.Athematic
analysiswasusedtoanalyseinterviewdata.Allparticipantsreportedthattheyenjoyed
theintervention,foundituseful,andvaluedusingmultimedia.LimitedITskillswerea
significantbarrierformost.
Chapter4isaninvestigationintoaself-guided,app-based,digitallifestorywork
interventionusingaCitizenScienceapproach.Dataonusage,experienceofindividual
sessions,andqualityoflifewerecollectedthroughtheapp,andfollow-upinterviewswere
alsocarriedout.Engagementwiththeappwasverylow,thoughitappearedtoprovide
someenjoymenttothosewhousedit.
InChapter5,thepreferencesofpeoplewithdementiaandcaregiversinrelationtodigital
lifestoryworkwereexplored.Caregiverscompletedanonlinediscretechoiceexperiment
survey,andpeoplewithdementiacompletedasimplifiedonlinesurvey.Aprivateone-to-
oneinterventionsetting(ratherthanacommunitygroupsetting)appearedtobethemost
importantattributetobothparticipantgroups.UserITskillsemergedasanessential
considerationwhendesigningtheintervention.
Chapter6isanevaluationoflifestoryworktouchscreenappsthatareavailabletopeople
withdementiaandtheircaregiversonapprepositories.Tenappswereincluded,andthe
accessibilityofeachappwasevaluated.Userreviewswerecarriedoutbypeoplewith
dementia,orcaregiversofpeoplewithdementia.
3
Chapter7concludesthisthesis.Itbringstogetherthefindingsfromallofthechapters,as
wellasidentifyingtheimplicationsandlimitationsofthosefindings.Directionsforfuture
researcharealsodiscussed.
Theresultsofthisthesisprovidesupportfortheuseoffacilitatedreminiscenceanddigital
lifestoryworkinbothcommunityandcarehomesettings.Resultscontributetolearning
andunderstandingaroundhowICTanddifferentICTsystemsinfluencetheexperienceof
lifestoryworkforpeoplewithdementiaandtheircaregivers,inbothpositiveand
negativeways.ReminiscenceanddigitalLSWwerefoundtobeenjoyableandmeaningful
forpeoplewithdementiaandtheircaregivers,bothprofessionalandfamily.
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Acknowledgements
Ihavecountlesspeopletothankforhelpingmealongthisexperience.FirstlyIwishto
thankmysupervisor,ProfessorBobWoods,forhisconstantencouragement,advice,
support,feedback,patience,andkindnessthroughoutthelastthreeyears.Iconsider
myselfveryfortunatetohavehadsuchaknowledgeableandkindmentor.
ThankyoutoDrGillWindleandalloftheDSDCfortheiradviceandfriendshipoverthe
lastthreeyears.Iamfortunatetohavebeensurroundedbysuchabrilliantteam.Iamvery
gratefultoProf.StevenSabatforfirstignitingmyinterestinthisarea,andforhis
continuedsupport.
Iwanttoexpressmysinceregratitudetoallofthepeoplewithdementiaandcaregivers
whocontributedtheirtimeandeffortstoparticipateinvariousaspectsofthisresearch.I
amsograteful.
ThankyoutoTomandKathyfromBookofYouforbeingsosupportiveandhelpful
throughoutallofmyresearchwiththem.ThankyoutoPennyDowdney,DawnDavies,
BrianMurcutt,andalloftheKESS2team.ThankyoutoKateIrving,RachaelJoyce,and
LouiseHopperatDCUforhostingmeonmyInterdemAcademyFellowship,andhelping
metogetthemostoutoftheexperience.
Thankyoutomyexaminers,ProfAssumptaRyanandDrSionWilliamsfortheirhelpful
suggestionsandideastoimprovethiswork.
ThankyoutoallofmyfriendsinWalesandathomeinIrelandwhohavehelpedme
throughthisinvariousways.AndtoTerence–thankyouforbelievingmeinwhenIdidn’t
believeinmyself.
Finally,Icertainlycouldnothavedonethiswithouttheendlesssupportand
encouragementofmyparents.Iameternallygrateful.ThankyouMamandDad,for
everything.
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Tableofcontents
Listoftablesandfigures 10
Chapter1.Introduction 11Introduction 12Objectiveofthethesis 27Structureofthesis 27Contributionofotherstothethesis 29Chapter2.Reminiscencetherapyfordementia:asystematicreviewoftheevidencefromrandomisedcontrolledtrials
30
Summary 31Introduction 32Methods 35Results 38Discussion 55Chapter3.Implementingdigitallifestoryworkforpeoplewithdementia:therelevanceofcontexttouserexperience.
59
Summary 60Introduction 61Methods 65Results 70Discussion 83Chapter4.Exploringthefeasibilityofaself-guideddigitallifestoryworkappforpeoplewithdementiaandtheircaregiversusingacitizenscienceapproach
88
Summary 89Introduction 90Methods 96Results 102Discussion 113Chapter5.Thepreferencesofpeoplelivingdementiaandcaregiversinrelationtodigitallifestorywork:asurveyanddiscretechoiceexperiment.
118
Summary 119Introduction 120Methods 122Results 128Discussion 135Chapter6.Anevaluationandreviewoftouchscreenlifestoryworkappsforpeoplewithdementia
139
Summary 140Introduction 141
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Methods 144Results 147Discussion 156Chapter7.Discussion 159Disseminationoffindings 185References 186
Appendix
AppendixA:Ethicalapprovalletters 207
AppendixB:Acronymsforincludedmeasures 211AppendixC:Informationsheetsandconsentforms(Chapter3) 212AppendixD:Lifestoryworkworkshopcontent 222AppendixE:Semi-structuredtopicguides 223
AppendixF:Initiale-mailcontactwithJDRparticipants(Chapter4) 224
AppendixG:Informationsheet(Chapter4) 225AppendixH:Semi-structuredtopicguide(Chapter4) 229AppendixI:QualityofLife–Alzheimer’sDiseaseMeasure 230AppendixJ:TheShortWarwick-EdinburghMentalWell-beingScale 232AppendixK:Qol-ADandSWEMWBSadaptedforuseinanapp 233
AppendixL:Momentaryassessmentfeedback 234AppendixM:Informationsheetsandconsentforms(Chapter5) 235AppendixN:Informationsheets(Chapter6) 241AppendixO:Guidanceprovidedtoappreviewers 246AppendixP:Excludedappsandreasonsforexclusion 247AppendixQ:AppEvaluationTool 248
10
ListsofTablesandFigures
TABLES
Table2.1 Descriptionofincludedstudiesandbiasratings 43
Table3.1 Recruitmentofparticipants 70
Table3.2Descriptivecharacteristicsofparticipantswithdementiaandfamilycaregivers 73
Table3.3 Findingsfromtheperspectiveoffamilycaregivers 75
Table3.4 Findingsfromtheperspectiveofcarestaff 78
Table4.1 CitizenSciencedescriptivecharacteristics 92
Table4.2 Participantflowthroughthestudy 102
Table4.3 Characteristicsofstudyparticipantsatbaseline. 103
Table4.4 MomentaryAssessmentScores 105
Table4.5 Caregivercharacteristicsinfollow-upinterviews 110
Table5.1 Attributes,levels,definitionsandcoding 127
Table5.2 Characteristicsofparticipantswithdementia 129
Table5.3 Surveyresponsesofparticipantswithdementia 130
Table5.4 Characteristicsofcaregiverrespondents 132
Table5.5 Resultsoftherandom-effectslogitregressionmodel 134
Table6.1 Descriptionofincludedapps 148
Table6.2 Appreviewrecruitmenttable 150
FIGURES
Figure1.1 MRCFrameworkfortheevaluationofcomplexinterventions 26
Figure2.1 Meta-analysisself-reportedqualityoflife 48
Figure2.2 Meta-analysiscommunication 50
Figure2.3 Meta-analysisdepressedmood 51
Figure2.4 Meta-analysiscognition 53
Figure3.1 ExamplesofBookofYouuserinterface 66
Figure4.1ScreenshotsofDementiaCitizensBookofYouappuserinterface
97
Figure4.2 Pagetitlesselectedbyparticipants 104
Figure5.1 ExampleofaDCEchoiceset 125
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Chapter1.Introduction
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Introduction
Theysayknowledgeispower,sowhatbetterwaytohavetheknowledgetobeableto
communicatewithapersonwithdementiathantofindoutwhatwasimportanttothemin
termsoftheirmemories,experiences,lifeevents,values,andbeliefs?(Dunne&Dunne,2017,
p.8).
Prevalenceandimpactofdementia
Globally,46.8millionpeoplearelivingwithdementia,representing5.2%ofpeopleover
theageof60(Princeetal.,2015).IntheUKalone,over850,000peoplearelivingwith
dementia,andthisnumberisprojectedtodoubleoverthenext25years,reaching2
millionby2050(Lewis,Karlsberg-Schaffer,Sussex,O’Neill&Cockcroft,2014).Inaddition,
thereare700,000informalcaregiversofpeoplewithdementiaintheUK,39%ofwhom
spendmorethan100hoursperweekcaregiving.Currently,dementiacoststheUK
economy26billionpoundsperyear,eclipsingthecostsofcancer,heartdisease,andstroke
combined(Lewisetal.,2014;Luengo-Fernandez,Leal,&Gray,2015).
Dementiaisanumbrellatermforarangeofprogressiveneurologicaldisorders,the
fourmostcommonofwhichareAlzheimer’sdisease,vasculardementia,frontotemporal
dementia,anddementiawithLewybodies.IntheDiagnosticandStatisticalManualof
MentalDisorders(DSMV),theAmericanPsychiatricAssociation(APA;2013)categorise
dementiaasamajorneurocognitivedisorder,causingasignificantdeclineinmemoryand
cognitionthathindersindependenceinday-to-daylife.Dementiaaffectsarangeof
faculties,includingshort-termmemory,mood,behaviour,language,learningcapacity,
orientation,comprehension,judgementandcommunication(APA,2013;WorldHealth
Organisation,1993).Thestagesofdementiaareusuallycategorisedasmild,moderate,or
advanced,dependingontheseverityofsymptoms.Therateatwhichdementiaprogresses
variesacrossindividuals,meaningtheexperienceforeachpersoncanbeverydifferent.
Dementiahasaprofoundeffectonmemory,thoughearlymemoriesforpastexperiences
andeventsfromone’spersonalliferemainrelativelyintact(Addis&Tippett,2004;
Kopelman,1989;Schroots,VanDijkum,&Assink,2004).Inthefollowingsections,the
relationshipbetweendementia,autobiographicalmemoryandidentitywillbeexplored,
beforeturningtoapproachesthatcanimprovelifeforpeopleaffectedbydementia,witha
specificfocusonreminiscenceanddigitallifestorywork(LSW).
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Autobiographicalmemoryfunctionandimpairmentinpeoplewithdementia
GreenbergandRubin(2003,p.688)defineautobiographicalmemoryasthe‘memoryofa
personallyexperiencedeventthatcomeswithasenseofrecollectionorreliving”.Thereis
disagreementamongneuropsychologistsaboutwhatautobiographicalmemory
specificallyis,butitisthoughttocomprisetworelativelyindependentmemorysystems:
personalincidentmemory(i.e.episodicmemory)andpersonalsemanticmemory
(Baddeley,1992;Dritschel,Williams,Baddeley,&Nimmo-Smith,1992;Greenberg&
Rubin,2003).PersonalIncidentMemoryismemoryforspecificeventsinone'slife,
includingcontextualinformationsuchasthetimeandplace.Semanticmemoryismemory
forpersonalinformationthatisnotcentredaroundspecificevents,suchasnamesof
preferredsportingteams,anddetailsaboutwhereonelived(Addis&Tippett,2004).
Thereisagooddealofevidencethatpeoplewithdementiahaveimpairedepisodicand
semanticmemory(Addis&Tippett,2004;Greene,Hodges,&Baddeley,1995).However,it
isalsowelldocumentedthatimpairmentindifferentaspectsofautobiographicalmemory
indementiaisdisproportionate,andthattherearetemporalgradients,wherebyrecent
memoriesaremoreimpairedthanoldermemories(Addis&Tippett,2004;Kopelman,
1989).Bluck,Alea,Haberman,andRubin(2005)proposedthreegeneralfunctionsof
autobiographicalmemory:directive,social,andself.The‘directive’functioninvolvesusing
thepasttoguidepresentandfutureactions,inadditiontoattitudes,behaviour,and
thoughts.The‘social’functionrevolvesaroundsharingmemoriestonurtureexisting
relationships,andtoalesserextent,developnewones.Finally,the‘self’functionrelatesto
thecontributionofautobiographicalmemorytothemaintenanceofpersonalbiographical
identityandasenseofcontinuity.Autobiographicalmemoryiscloselyrelatedtolife
stories(Habermas&Bluck,2000;McAdams,2001),andaccordingtoRosenwaldand
Ochberg(1992,p.1),lifestories‘arethemeansbywhichidentitiesmaybefashioned’.
Autobiographicalmemory,identity,anddementia
Somepsychologicalandphilosophicaltheoriessuggestthatthereisarelationshipbetween
autobiographicalmemoryandidentity(e.g.Parfit1986;Schechtman,1996),butresearch
resultshavebeeninconclusive.AddisandTippett(2004)observedthat20peopleinmild
tomoderatestagesofAlzheimer’sdiseasehadaweakersenseofidentitythan20age-
matchedhealthycontrols,duetoautobiographicalmemoryimpairment.However,Naylor
andClare(2008)didnotidentifyasignificantcorrelationbetweenscoresonmeasuresof
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autobiographicalmemoryandself-concept,andsuggestedthatthereisnostraightforward
connectionbetweenautobiographicalmemoryimpairmentandidentityinpeoplewith
dementia.Inalaterreview,CaddellandClare(2011)concludedthatsomepartsofidentity
arewellpreservedinpeoplewithdementia,evenatmoreadvancedstages.Thiswaslater
supportedbyempiricalwork,inwhichEustacheandcolleagues(2013)observedthat
peoplewithmildtomoderateAlzheimer’sdisease(AD)andhealthycontrolshadsimilarly
preservedself-identityandthatthisremainedrelativelystableoverthetwo-weektesting
period.However,participantsreportedthattheywere14years(onaverage)youngerthan
theywere,andappearedtobelivinga‘pre-ADidentity'suggestingthatpeoplewithAD
maynotbeabletoupdatetheirself-knowledgeduetoepisodicmemoryimpairments.
Eustacheandcolleagues(2013)suggestedthatthissupportstheconceptthatidentityhas
twosides.Onesideisbroadandstablethroughoutlifeandcanpersistdespitecognitive
impairment.Theothersidevariesacrosstimeandexperiences,ismorefragile,andcanbe
disturbedbycognitiveimpairment(Eustacheetal.,2013).Thiscorroboratesprevious
workbyRicoeur(1990)amongothers,whoproposedthatidentityconsistsoftwosides,
‘sameness'and‘selfhood'.‘Sameness'isrepresentationsofoneselfasthesamebeing.Itis
forgedovertime,andthereforedeeplyintegrated,forexample,‘Iamoutgoing'.‘Selfhood'
ontheotherhand,isamoretransientrepresentationofoneself,withdifferent
characteristicsovertime,forexample,‘IamaPhDstudent'.Ricoeur’s(1990)theory
challengedLocke's(1689/2001)conceptoftheTabulaRasa,inwhicheverymindisa
blankslateatbirth,andfilledwithmemoriesandexperiencesthatshapeidentity.Ricoeur
(1990)arguedthatindividualshaveadifferentsenseofidentityovertime,ratherthana
‘permanentself',asproposedbyLocke.Followingtheirstudy,Eustacheandcolleagues
(2013)suggestedthatthetwoapproachesarecomplementary,andthatautobiographical
memoryimpairmentcanimpairtheupdatingofself-representationsrelatedtothe
present,butnotenduringpersonalitytraits.
ContinuityTheory
Atchley(1999,p.1)describescontinuitytheoryas‘atheoryofcontinuousadult
development,includingadaptationtochangingsituations'.Itsuggeststhatmiddle-aged
andolderadultshaverelativelystableinternalandexternalstructuresastheyage.
Internalstructuresincludeexperiences,preferences,dispositions,temperamentandskills,
whileexternalstructuresrelatetophysicalandsocialenvironments,suchasrelationships,
socialroles,andactivities(Atchley,1989).Atchley(1989)suggeststhatcontinuitycanbe
15
viewedasanadaptivestrategy,inwhichindividualstrytounderstandandinterpret
changebyrecallingtheirpast(Atchley,1989).Giventhesetiestorecall,Parker(1995)
advocatesthatreminiscence(discussedlaterindetail,beginningp.17)isavaluabletoolto
facilitateasenseofcontinuityforolderadults,andthatlifestoriesareaproductof
reminiscenceprocesseswhichhelpindividualstoadapttochange.Asself-identitycan
becomefragmentedoverthecourseofdementia,lifestoriesmaybeinstrumentalin
facilitatingasenseofcontinuityaspeoplewithdementiatransitionthroughlaterlife,and
adapttochange,whilemaintainingasenseofself(Whitbourne,1985;ascitedinParker,
1995),
Individualsbuildlifestoriesastheyage,andthesestoriesincorporatepastevents
intoanorganizedsequence,givingthemapersonalmeaningandasenseof
continuity….Lifestoriesarealteredthroughoutthelifespan;theychangeasdetails
areforgottenandascertainscenesarehigh-lighted.Thesebiasesmaybeselective
mechanismsdesignedtopreserveidentity(p.521)
Kitwood’sTheoryofPersonCentredCare
Person-centredcareisaconceptthatwasintroducedtodementiacarebythelateTom
Kitwood,thoughthetermoriginatedintheworkofCarlRogers(1961)inrelationto
psychotherapy.Kitwood(1988)distinguishedperson-centredcarefromapproachesthat
focussolelyonthemedicalandbehaviouralmanagementofdementia.Headvocatedthat
theclinicalpresentationofdementiaisnotonlyaresultofhealthandneurological
impairmentbutalsotheperson'spersonality,theirbiographyandsocialpsychology
betweenthemandthosearoundthem(Kitwood,1993):
DementiaPresentation(D)=Personality(P)+Biography(B)+Health(H)+
NeuropathologicalImpairment(NI)+SocialPsychology(SP)�
In1997,Kitwood’spivotalbook,DementiaReconsidered,triggeredamajorshiftinthe
dementiacarecommunity.Forthefirsttime,thePERSONwithdementiawasplacedatthe
centreofcare,ratherthanthepersonwithDEMENTIA.Previously,theperson’sdementia
hadbeenthemainfocusofcare,ratherthepersonthemselves.Kitwood(1997,p.8)also
introducedtheconceptofpersonhood,“astandingorstatusthatisbestoweduponone
humanbeing,byothers,inthecontextofrelationshipandsocialbeing”.Heclaimedthatto
16
achievepersonhood,peoplewithdementiamusthavethefollowingpsychologicalneeds
fulfilled:comfort,attachment,inclusion,occupation,andidentity.This,inturn,contributed
tothecentralneedforlove(Kitwood,1997).Sincetheintroductionoftheterm‘person-
centredcare',understandingandexpertiseindementiacarehaveevolved,thoughBrooker
(2004)cautionsthatit'smeaningmayhavebecomelost.DuetoKitwood’suntimelydeath
in1998,hecouldnotdeveloporclarifytheconceptofperson-centredcarefurther.Using
hisworkasafoundation,Brooker(2004)laterwentontoclarifywhatperson-centred
careconstitutesinrelationtodementia.Sheproposedthatperson-centredcare(PCC)
encompassesfourkeyelements:
1. Valuingpeoplewithdementiaandthosewhocareforthem(V)�
2. Treatingpeopleasindividuals(I)
3. Lookingattheworldfromtheperspectiveofthepersonwithdementia(P)�
4. Apositivesocialenvironmentinwhichthepersonlivingwithdementiacan
experiencerelativewell-being(S)
Therefore,PCC=V+I+P+S(Brooker,2004,p.216).
Person-centredcareisviewedasthefundamentalvalueincaringforsomebodywith
dementia.Itismuchmorethanindividualisedcare,butratheramovementthatreaches
muchfurther(Brooker,2004).Itrequiresthatcareprovidersrecogniseeachpersonasa
uniqueindividual,withauniquebiographyandidentity.BruceandSchweitzer(2008)list
severalwaysinwhichawarenessofaperson’slifestorycontributestoperson-centred
care,includingtheofunderstandingmeaningandbehaviour,facilitatingcommunication,
supportingidentityandprovidingideasformeaningfuloccupation.Knowledgeofpeople’s
lifestoriesisthereforeconsideredessentialtoprovidetrueperson-centredcare.Belland
Troxel(2001),arguethataperson’sbiographyisasimportanttoperson-centredcare,asa
medicalhistoryistomedicalcare.
Movingfrompharmacologicaltopsychosocialinterventions
Despiteongoingefforts,adisease-modifyingtreatmentfordementiahasyettobe
developed,andpeoplewithdementiaarenotlivingaswellastheycanbe(Dowrick&
Southern,2014).Themostprevalentunmetneedsamongpeoplewithdementiaare
psychologicaldistress,daytimeactivities,andcompanionship(Bakkeretal.,2014;
Kerpershoeketal.,2017;Miranda-Castillo,Woods,&Orrell,2013;Orrelletal.,2008;van
17
derRoestetal.,2009).Approximately90%ofpeoplewithdementiaareaffectedby
distressthatleadstobehavioural,psychological,andsocialchallengesatsomepointover
thecourseofthedisease(Ballard,Corbett,Chitramohan&Aarsland,2009).Thisisalso
distressingandconcerningforcaregiversandcanpresentchallengesfortreatmentand
care(Hurt,2008;Rosdinom,Zarina,Zanariah,Marhani&Suzaily,2013).Inthepast,
pharmacologicalinterventionswerethefirstportofcalltorelievethesechallenges.Now,
thereisnowagrowingconsensusthatpsychosocialinterventionsshouldbeusedinthe
firstinstance,asevidenceshowsthattherisksofantipsychoticprescribingoutweighthe
benefits(Corbett,Burns,&Ballard,2014;Orgeta,Qazi,Spector,&Orrell,2014;Testadet
al.,2014).Theaimofpsychosocialinterventionsistoimprovequalityoflifeandto
maximisecapacityandcapabilitydespitecognitivedecline(Rabins,2007).Thereare
promisingresearchresultsthatpsychosocialinterventionscansignificantlybenefitpeople
withdementia,caregivers,andrelatives,thoughtheevidencebaseisstillbeingdeveloped,
andmorehigh-qualityresearchisneeded(Lawrence,Fossey,Ballard,Moniz-Cook,&
Murray,2012;Olazaránetal.,2010;Orgetaetal.,2014;Testadetal.,2014).
ReminiscenceTherapy
ReminiscenceTherapyisoneofthemostpopularpsychosocialinterventionsforpeople
withdementia.Simplyput,itis‘thediscussionofpastactivities,eventsandexperiences,
usuallywiththeaidoftangibleprompts’(Woods,Spector,Jones,Orrell,&Davies,2005,p.
2).‘Prompts’mightincludephotographs,letters,music,certificates,orvideos.The
developmentofreminiscenceasatherapeuticinterventionisoftentracedbacktothe
workofRobertButler(1963).Previously,reminiscingwasviewedasbeing‘stuckinthe
past’.However,ButlerintroducedtheconceptofLifeReview,anaturalreflectiononlife’s
experiences,bothpositiveandnegative.Thischallengednegativeperspectivesof
reminiscenceandhelpedittobeviewedasanecessaryandpositiveevaluativeprocess.
ReminiscencealsobecameassociatedwithErikson's(1950)psychoanalytictheoryof
psychosocialdevelopment,thefirsttheoryofpersonalitytoincludeolderadults.
Accordingtothistheory,aperson'sfinalstageofdevelopment(EgoIntegrityversus
Despair),involveslookingbacktoresolveone'saccomplishmentsandlosses,attain
‘wisdom',andavoiddespair.Later,inthe1970s,apivotalstudyofreminiscencetookplace
(Langer,2009).Twogroupsofoldermenwereaskedtoimaginethemselvesat55yearsof
age.Onegroupwasplacedinanenvironmentmirroringthatera,with1950sradio,décor,
TV,food,andmedia,whiletheotherwasplacedina1970senvironment.Afterfivedays,
18
meninbothgroupsshowedphysicalandcognitiveimprovements,buttheseweremore
significantinthosewhowereassignedtothe1950senvironment(Langer,2009).This
studywasinstrumentalinacceleratingthepopularityofreminiscencetherapy.
Thefirstidentifiedstudyofreminiscencetherapyfordementiawascarriedoutby
Kiernat(1979).Inthefollowingyears,itsuseindementiacareintheUKwaspopularised
byNorris(1986)amongothersandimplementedwidely.Sinceitsintroduction,
reminiscencehasencompassedvariousdefinitions,conceptualisations,theoretical
foundations,andgoals.Thishascreatedsomebarriersinassemblingahigh-quality
evidencebaseofitseffectsonpeoplewithdementia,asinterventionsarenotoften
reportedindetail,creatingdifficultyinunderstandingwhataspectsorapproachesof
interventionsweremostsuccessful.Followingaconceptanalysisofreminiscencein
relationtodementia,threereoccurringattributeswereidentified:
1. Reminiscenceisaprocessofrecall,whichoccursinstages.
2. Reminiscenceisaninteraction,whichinvolvesrecallingortellingofearly
eventsoramemorableearlyexperiencewhichmayoccurwithorwithout
specificpurposes.
3. Reminiscenceisaninteractionbetweenthepersonandoneormoreindividuals.
(Dempseyetal.,2014,p.179)
ClassificationsofReminiscenceTherapy
Therehavebeenfourmaintaxonomiesofthetypesandfunctionsofreminiscencetherapy
sincethe1990s.WongandWatt(1991)describedseventypesofreminiscencecomprising
integrativereminiscence,instrumentalreminiscence,transmissivereminiscence,escapist
reminiscence,defensivereminiscence,obsessivereminiscence,andnarrative
reminiscence.Later,Webster(1993)developedtheReminiscenceFunctionScale,which
encompassedeightprimaryfunctionsofreminiscence:boredomreduction,death
preparation,identity,problem-solving,conversation,intimacymaintenance,bitterness
revival,andteach/inform.Gibson(1994)presentedjusttwotypesofreminiscence:
generalreminiscencethatusesbroadandlooselyrelevanttriggerstoprompt
conversation;andspecificreminiscence,thatuseshighlyrelevantpersonalstimulirelated
toaperson’slifehistory.Morerecently,Westerhof,Bohlmeijer,andWebster(2010)
distinguishedbetweenthreecategoriesof‘therapeutic'reminiscencetherapy:simple
reminiscence,lifereview,andlifereviewtherapy.Simplereminiscenceinvolvesgiving
19
generalpromptstoapersonconcerningtheirpast,tostimulatetherecallanddiscussionof
pleasantmemories(Haight&Dias,1992;Westerhofetal.,2010).LifeReviewcanbe
considered‘integrativereminiscence’whichisamorestructured,systematic,evaluative
processinwhichtheobjectiveistoachieveasenseofself-worth,andreconcilewithone’s
past(Westerhofetal.,2010;Wong&Watt,1991).Finally,LifeReviewTherapyis
essentiallyLifeReview,withsomeadditionaltherapeuticfeaturessuchaselementsof
problem-solvingtherapyornarrativetherapy(Westerhofetal.,2010).
LifeStoryWork
LSWisoneofthemanyfacetsofreminiscencetherapy.Thetermsareoftenused
interchangeably,butLSWisusuallymorepersonalandindividual,withanemphasison
capturingmemories(Eley&Kaiser,2017;Woods&Subramaniam,2017).Itisa
biographicalapproachandconsideredparticularlyusefulattimesofchangeandtransition
(Woods&Subramaniam,2017).Althoughlifestorybooksareoftenanoutcomeoflife
review,LSWitselfshouldbeconsidereda‘therapeuticactivity’asitmayprovide
enjoymentandimprovewellbeingforthepersonratherthana‘therapy’(McKeownetal.,
2017).Drawinguponpreviouswork(e.g.Murphy1994;Murphy&Moyles,1997),the
followingdefinitionofLSWwasproposed,
…LSWisaformofinterventioncarriedoutinhealthorsocialcarepractice,andis
anumbrellaterm,encompassingarangeofterms/interventions,forexample,
biography,lifehistory,lifestories.Itisusuallyundertakentoelicitanaccountof
someaspectofaperson'slifeorpersonalhistorythatgoesbeyondaroutinehealth
assessmentundertakentoplancareandtreatmentandaimstohaveanimpacton
thecarethepersonreceives.LSWimpliescollaborationwithanother/othersto
gatherandrecordinformation,anditusuallyresultsina‘product',forexample,a
storybook,collage,noticeboard,lifehistory/biographysummary,ortape
recording.Itisanongoing,dynamicprocessratherthanatasktobecompletedand
isusuallyplannedandpurposeful,althoughitdoesnotneedtobecarriedout
systematically(McKeown,Clarke,andRepper,2006,p.238).
GiventhatLSWdrawsuponaspectsofautobiographicalmemorythataregenerallyless
affectedbydementia(i.e.earlymemoryforspecificevents),itcanbeagoodfitforpeople
withdementiaasitprovidesanopportunitytoconcentrateonthosememoriesthatare
20
moreintact,andfocusonwhatthepersoncanremember,ratherthanmemorythatis
moreimpaired(Addis&Tippett,2004;Kopelman,1989).
AlthoughLSWisamorespecifictermthanreminiscence,itembodiesarangeof
approaches(Woods&Subramaniam,2017).Forexample,somestudiesthatrefertoLSW
carryoutanindividualisedintegrativeprocessoflifereviewwithparticipants,while
othersdocumentlessintensive,andlessstructuredapproacheswiththesimplerecording
ofanecdotes(Woods&Subramaniam,2017).LSWisassociatedwithoutcomessuchas
improvedqualityoflife,personhood,self-identity,understanding,communicationand
relationships(Bruce&Schweitzer,2008;Gridley,2017).Incaresettings,LSWcanimprove
care,facilitatetheunderstandingofbehaviour,communication,andprovideacommon
ground,inadditiontocontributingtoimprovedstaffsatisfactionandmotivation(Bruce&
Schweitzer,2008;Gridley,2017).However,outcomescanvaryconsiderablydependingon
thespecifictypeofLSW.FollowingareviewofLSWresources,Kindell,Burrow,Wilkinson,
andKeady(2014)haveemphasisedtheneedtoclarifythefocusandgoalsofLSWfor
peoplewithdementia.TheyproposedthatLSWcreatesvariouspointsofconnection,
whichareeachassociatedwithdifferentoutcomes,
1. Emotionalconnections:LSWasapsychologicalprocesstohelpthepersonconnect
positivelywiththeirownidentity,andwithotherstopromoteemotionsandcoping
onapsychologicallevel.
2. Interactionalconnections:LSWasameansofcreatingalifestorybookorother
resource,tosupportcommunication,memories,andconversationonanongoing
basis.
3. Buildingnewconnections:LSWasaprocesstobuildanddevelopsupportive
relationshipsbetweenpeoplewithdementia,theirrelatives,andcarestaffto
challengedepersonalisedcare.
4. Practicalcareconnections:LSWasawaytoinformthecreationofasuitablecare
plan,builtaroundtheperson’suniqueness.
WhileLSWisassociatedwithseveralbenefits,therearealsolimitationsandchallenges
tobeconsidered.McKeown,Ryan,Ingleton,andClarke(2015)conductedanin-depthcase
studyanalysis,toexploretheexperiencesofpeoplewithdementia,relatives,andcarestaff
inrelationtoLSWinhealthandsocialcaresettings.Theyidentifiedchallengesrelatingto
21
personaldisclosures,variablequalityoflifestorybooks,enablingpeopletotelltheirown
lifestoryratherthantheirrelativeorstaffmembers.McKeown,Gridley,andSavitch
(2017)warnthatlifestorybookscanbeunderused,orevenoverused.Oftenlife
storybookscanbeputaway‘forsafekeeping’orcaregiversmaynotevenknowoftheir
existence.Overusemayoccurwhenothersbecomesointerestedinthelifestorybookthat
theydonotrealisethepersonwithdementiaisoverwhelmedorinneedofabreakduring
theactivity.Perhapsthehappymediumistoseelifestorybooksbeingused,buttheother
personorpeopleremainvigilantoftheexperienceofthepersonwithdementiawhile
usingthem.Otherchallengesrevolvearoundconsent,privacy,therecallofupsetting
memories,ownershipofthelifestory,andrelayingsensitiveinformationaboutothers
(Batson,Thorne&Peak,2002;Grøndahl,Persenius,Baath,&Helgesen,2017;McKeownet
al.,2017;Murphy,2000).ProvidingtrainingandsupervisiontoLSWfacilitatorstohandle
anypersonaldisclosuresordistressingmemoriessensitivelyisessential,aspeoplewith
dementianeedtobesupportedinLSW.Gibson(2005)advisesthatpersonaldisclosures
shouldbeomittedfromanyrecords,butnotbeexcludedfromdiscussions.Itisalso
importanttoacknowledgethatnoteveryonewillenjoy,orbecomfortable,withdiscussing
thepastandthatotherpsychosocialinterventionsmightbemoretotheirliking(McKeown
etal.,2017).
Previousreviewsofreminiscencetherapyandlifestorywork
InanearlyCochranereview,reminiscencewasassociatedwithsomeimprovementsin
cognition,mood,generalbehaviour,carerstrain,andstaffknowledge(Woodsetal.,2005).
However,themeta-analysiscomprisedjustfoursmallandrelativelylow-quality
randomisedcontrolledtrials(RCTs),thatwereamixtureofgroupandindividual
interventionmodalities.Theauthorsemphasisedtheneedtofollowclearanddetailed
protocols,andtoconductrigorousresearch,sothatkeyelementsofreminiscencecanbe
definedandevaluated(Woodsetal.,2005).Inalaterreviewofsevenstudies,
reminiscencetherapywasassociatedwithimprovedmoodandaspectsofcognitive
function(Cotelli,Manenti,&Zanetti,2012).Againhowever,studiesweresmall,employed
variousmethodologies,andwereofrelativelylowquality.Kwon,ChoandLee(2013)
reviewed10studiesofreminiscencetherapyfordementiaandreportedimprovementsin
cognition,communication,andqualityoflife.However,theincludedstudieswerenot
referencedordescribed,andthereviewmethodswerenotreportedindetail.Inareview
ofpsychosocialinterventionstoaddressdistressinpeoplewithdementiaincarehome
22
settings,Testadandcolleagues(2014)observedthatreminiscencewasconsistently
associatedwithimprovedmood,thoughthesixincludedRCTswerequitevariedinterms
ofinterventionlengthandfrequency.Mostrecently,Huangandcolleagues(2015)
identifiedasmalleffectofreminiscencetherapyoncognition,andamoderateeffecton
depressioninareviewof12studies.Thereviewauthorsalsocarriedoutsub-group
analysestocomparetheeffectsincommunityandcarehomesettingsandfoundthat
reminiscencehadamoresignificanteffectondepressivesymptomsinpeopleincare
homes.However,studieswereofpoorquality,andtwo-thirdsdidnotreportclear
descriptionsofthetreatments.Furthermore,interventionmodalitiesanddifferingcontrol
conditionscouldnotbeexplored.
Morespecificreviewsofreminiscencetherapyfordementiahavealsobeencarried
out.Inareviewofsixstudies,Kimandcolleagues(2006)highlightedearlyevidenceof
groupreminiscencebeingassociatedwithimprovementsincommunicationandcognition,
andrecommendeditasacognitive-linguisticinterventionforpeoplewithdementia.Later,
Blake(2013),conducteda‘mini-review',exploringtheeffectsofgroupreminiscenceon
depressivesymptomsinpeoplewithdementia,includingpapersfromfourdatabases
publishedafter2002.Fourtrialswereidentified,allshowingsignificantbenefitfor
depressivesymptoms,thoughagain,thequalityofstudieswaspoor.Subramaniamand
Woods(2012)focusedonindividualreminiscenceinterventionsforpeoplewithdementia.
ThereviewincludedfiveRCTs,allofwhichhappenedtotakeplaceincarehomes.The
mostpositiveresultsconcerningmood,wellbeing,andaspectsofcognitivefunctionwere
inthethreestudiesthatinvolvedthecreationofalifestorybook(Subramaniam&Woods,
2012).
AlthoughstudiesofLSWinterventionsaretypicallyincludedinbroader
reminiscencereviews,thereappeartobetwopublishedreviewsspecifictoLSWfor
dementia.InareviewofLSWinterventionmethodologiesincarehomesettings,Moosand
Bjorn(2006)foundthatLSWwasassociatedwithpositiveself-identity,enhancedquality
oflife,andimprovedsocialinteractions.Inthefiveinterventionsthatusedlifestorybooks,
thequalityandquantityofinteractionsbetweenparticipantswithdementiaandcarestaff
improved.Itwasconcludedthatmorequalitativeworkisneeded.Inarecentreviewof
bothqualitativeandquantitativestudies,Grøndahlandcolleagues(2017)exploredtheuse
oflifestorieswithpeoplewithdementia,theirrelatives,andcarestaff.Followingan
23
integrativeanalysisoffivestudies,theauthorsconcludedthattheuseoflifestoriesincare
homesmightcontributetothe‘maintenanceofthepersonwithdementiaasawhole
person’(p.4).Theyidentifiedhowusinglifestoriesenabledthepersonwithdementiato
beheard,relativestoseethewholeperson,andcarestafftounderstandthepersonwith
dementiaandtheirrelatives.However,itwasalsoemphasisedthatveryfewstudieshave
focusedonhowtoactuallyuselifestories,andmorerigorousresearchwascalledfor.
Whiletheabovereviewsdocumentpromisingevidenceinfavourofreminiscence
work,theevidenceislimitedbysmallsamplesizes,differentinterventionapproaches,
heterogeneousgroups,andrelativelylow-qualitystudies.Therehasbeenaresoundingcall
formorehigh-qualityresearchofreminiscencetherapyfordementia,withdetailed
reminiscencemethodsandcomparablegroups.Inrecentyears,large,high-qualityRCTsof
reminiscencetherapyforpeoplewithdementiahavebeenpublished(e.g.Charlesworthet
al.,2016;O’Sheaetal.,2014;Woodsetal.,2012).Accordingly,thisthesisincludesa
reviewofreminiscencetherapyforpeoplewithdementia,includingsubgroupanalysesof
differentreminiscencemodalitiesandsettingsinChapter2.
Digitalreminiscenceandlifestorywork
Thereisincreasinginterestinhowinformationandcommunicationtechnology(ICT)can
beusedtoassistpeoplewithdementia(SCIE,2012).OneapplicationhasbeenusingICT
basedinterventionsinreminiscenceandLSW.ICTprovidesaccesstoarangeof
stimulatingmultimediamaterialssuchasarchivedTVandradiobroadcasts,videos,and
photographs.Thecombinationofvideo,music,andaudionarrationwithphotographsand
textcanthencreateacompellingmultisensoryexperienceforthepersonwithdementia.
Asinterestinusingdigitaltechnologiesforreminiscencepurposesdeveloped,
SubramaniamandWoods(2010),setouttoexplorethefeasibilityofICT-based
reminiscenceinterventionsforpeoplewithdementia,inareviewof11studies.Although
mostincludedtrialsweresmallpilotstudies,itwasconcludedthattheapproachis
feasible.Theauthorshighlightedtheneedformoreresearch,tounderstandhowthese
systemscanbestbeusedtherapeuticallywithpeoplewithdementiaaswellastheir
caregivers(Subramaniam&Woods,2010).
Severalstudieshavefoundthatpeoplewithdementiaandcaregiverspreferdigital
reminiscenceapproachestoconventionalones(Astelletal.2004;Astelletal.,2005;Astell,
Ellis,Alm,Dye&Gowans,2010;Sarne-Fleischmann&Tratinsky,2008).InScotland,a
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touchscreenmultimediadevicecalledCIRCAwasdevelopedforthepurposesof
reminiscencewithpeoplewithdementia.WhendigitalreminiscenceusingCIRCAwas
comparedtoconventionalreminiscence,itemergedthatdigitalreminiscencewasless
hardworkforfamilycaregiversandcareworkers,andmoreenjoyableforallinvolved.
(Astelletal.,2005;Astelletal.,2010;Astelletal.2004).Furthermore,whenparticipants
withdementiausedCIRCA,theywerefoundtoplayamoreactiveroleinconversations
thanwhentraditionalreminiscencewasused(Almetal.,2004).Similarmultimedia
devicesincorporatinggenericorpersonalisedreminiscencestimulihavealsobeenfound
tohavepositiveeffectsonusersbothathomeandincarefacilities(Kerssensetal.,2015;
Olsen,Hutchings&Ehrenkrantz,2000).
Thecreationanduseofadigitallifestory‘book’,inwhichthepersoncancombine
variousmultimediastimuli,isagrowingtrendindigitalreminiscence(Woods&
Subramaniam,2017).FollowingtheirreviewofICTbasedreminiscence,Subramaniamand
Woods(2010)suggestedthatthesebiography-typesystemsareoneofthebestwaysof
maintainingtheidentityofthepersonwithdementia,akeyobjectiveofreminiscence
work.Thereissomeearly,promisingworksupportingthistrend(Critten&Kucirkova,
2017;Damianakis,Crete-Nishihata,Smith,Baecker,&Marziali,2010;Ludwin&Capstick,
2015;Lynch,Reilly,Lowe,Rhoda,&McCarron,2016;Stenhouse,Tait,Hardy,&Sumner,
2013).Forexample,CrittenandKucirkova(2017)supportedthreepeoplewithdementia
tocreatepersonaliseddigitallifestoriesonaniPadapp.Theyfoundthatthedigitallife
storybookhelpedparticipantstoaccesstheirpersonalmemories,andwereexcitedto
createandsharetheirdigitallifestories.AnIrishstudyfoundthatdigitallifestorieswere
apowerfultoolinfacilitatingcommunicationandsupportingperson-centredcareina
disabilitysupportservicewithpeoplewithanintellectualdisabilitywhohadadiagnosisof
dementia(orwereatanincreasedriskofit).Thedigitallifestorybookincludedphotos,
audionarration,musicandvideoclipsandwascreatedforthepersonwithdementiawith
thesupportoftheirrelativesandclosecaregivers(Lynchetal.,2016).Inacommunity
setting,Stenhouseandcolleagues(2013)ledafour-daydigitalstory-makingworkshop,in
whichtheysupportedparticipantstocreatetheirdigitallifestorieswithphotographs,
audionarrationandmusicthroughperson-centredrelationships.Usingparticipantreports
andfacilitatorreflections,theyfoundthattheparticipantsbecamemoreconfidentand
moreengagedthroughouttheworkshops,andhadimprovedcommunicationand
increasedconfidence.Itwassuggestedthatthesocialinteractionandexpressionof
25
themselvesthroughtheirdigitallifestorieshadatherapeuticvaluetoparticipants.
Overallstudydesign
TheworkpresentedinthisthesiswasundertakenasaKnowledgeEconomySkills
Studentship,supportedbyEuropeanStructuralFunds.Thesestudentshipsarebasedona
collaborationwithacompanypartner,inthiscaseaNorthWalessocialenterprise‘Bookof
You’.Thecollaborationinvolvesthestudentspendingtimewiththecompanyand
designingandimplementingresearchstudiesinconsultationwiththemtoaddressissues
ofinterestandconcerntothecompany.
Accordingly,thecoreofthisthesisisanevaluationoftheservicesofferedbyBook
ofYou.Thiswasdonewithaviewtounderstandingmoreabouttheeffectsoftheservicein
additiontotheexperiencesofthosereceivingit,andtomakerecommendationsregarding
furtherdevelopmentoftheservice.Chapters3and4presentthisevaluation,firstoflocal
face-to-faceservicesandthenofanattempttooffertheservicethroughaself-guided
touchscreenappusingaCitizenScienceapproach.Thesechaptersaresummarisedinthe
followingsection‘Structureofthethesis’.Developingoptimalpathwaysforservice
deliveryisakeythemethatrunsalongsidethisthroughoutthisthesis,andisdiscussedin
moredetailinChapter7(p.174).
Theremainingchapterssupportthisdevelopmentthroughavarietyofmethods.In
Chapter2,existingliteratureontheeffectivenessofreminiscenceworkisreviewed,with
theintentionofprovidingBookofYouwiththebestavailable,highqualityevidencein
makingtheircasetoservicecommissioners.Chapter5explorespreferencesofpeoplewith
dementiaandcarersrelatingtospecificoptionsbeingconsideredbyBookofYoufortheir
servicedevelopment.Finally,Chapter6exploresthemarketcontextforlifestorybook
apps,toinformBookofYouinrelationtopotentialnextstepsfollowingthedifficulties
experiencedwiththeself-guidedtouchscreenappinChapter4.
Thus,whilsteachchapterhasaspecificanddistinctresearchdesign,theoverallthemeisa
multiplemixedmethodsevaluationtoinformservicedevelopment,applyingresearchto
real-worldapplication.
TheMedicalResearchCouncilFramework(MRC,2008)forComplexInterventions
identifiedfourkeycomponentsfortheevaluationofcomplexinterventions:‘development’,
‘feasibility/piloting’,‘evaluation’and‘implementation’(seeFigure1.1).Accordingtothe
26
MRC,eachstageisequallyimportantandneglectofdevelopmentandpilotingworkmay
notbeconducivetotheproductionofstronginterventionsforevaluationand
Figure1.1.MRCFrameworkfortheevaluationofcomplexinterventions(adaptedfromMRC2008).From‘Randomisationandchance-baseddesignsinsocialcareresearch’byB.Woods&I.Russell,2014.
implementation.Theworkpresentedinthisthesisfallswithinthe‘development’and
‘feasibility/piloting’phasesofthemodel,withconsiderationatanearlystageofreal-
worldimplementation,buteffectivelytakingforwardgroundworktowardslarger,
controlledstudiesofeffectiveness.Withinthe‘development’phase,theimportanceof
systematicallyreviewingtheevidence(Chapter2)andconsideringthepossibilitiesand
avenuesofimplementationarehighlighted(Chapters3-5).Inthe‘feasibility/piloting’
phase,thereisanemphasisonsmallscaleworktoassessfeasibilityandpotentialfuture
evaluationmethods,usingparticipantinterviewsorfocusgroups(Chapter3).Giventhe
natureofthefundingofthiswork,itispossibletobeginconsideringelementsofthe
‘Implementation’phaseastheserviceiscurrentlyfunctioninginNorthWales.
Theoreticalunderpinnings
TheworkinthisthesisisunderpinnedbyKitwood’sTheoryofPerson-CentredCare
describedearlierinthischapter(p.15-16).Biographyistheessenceofreminiscenceand
lifestorywork,andaccordingtoKitwood(1997),iskeytopersoncentredcare.Therefore,
biographyisacentralcomponentofthisthesis,witheachchapteraimingtocontributeto
greaterunderstandingoftheoptimalwaytofacilitatethesharingandunderstandingofa
person’slifestory,soastofacilitateandimprovepersoncenteredness.Kitwood(1993,
1997)andlaterBrooker(2004)alsoassertthatapersoncentredapproachmustinclude
27
andvaluetheperspectiveofthepersonwithdementia.Thevoiceofthepersonwith
dementiafeaturessignificantlyinthisthesisandunderpinsboththemethodologyandthe
objectivesofthechapters.Forexample,inChapter3,peoplewithdementiasharedtheir
personalexperiencesandperspectiveofalocalLSWservicethroughsemi-structured
interviewsaspartofanevaluationoftheservice.Later,inChapter6,peoplewithdementia
wereaskedtoprovidetheirreviewsofdigitalLSWappsinanattempttoevaluateand
documentthosethataremostaccessibleforthisgroup.Inboththesechapters,theoutlook
ofthepersonwithdementiawasparamounttotheevaluation(whichiscrucialastheyare
thetargetpopulation).Thecorevaluesofthistheoryareagainemphasisedthrougha
CitizenScienceapproachinChapter4wherebypeoplewithdementiaandthosewhocare
forthemwereempoweredtobecomemorethanstudyparticipantsandcontributetothe
researchstudyonagreaterlevel.Objectiveofthethesis
Theoverallaimofthisthesisistomakeanoriginalcontributiontoliteratureandpractice
onthetopicofreminiscenceanddigitalLSWforpeoplelivingwithdementiaandtheir
caregivers.Thespecificobjectivesofeachresearchchapterareasfollows:
Chapter2:Tosystematicallyreviewtheevidencefortheeffectivenessofreminiscence
therapyandlifestoryworkwithpeoplewithdementia.
Chapter3:ToexploreandunderstandmorefullytheexperiencesofthoseusingtheBook
ofYouservices,includingperspectivesofpeoplewithdementia,familycarersandcare
staffincarehomes.
Chapter4:ToexplorethepotentialofBookofYouasaself-guideddigitallifestorywork
app,andtheexperiencesofpeoplewithdementiaandcaregiverswhouseit.
Chapter5:Tounderstandmorefullytheaspectsofdigitallifestoryworkservicesthatare
importanttopeoplewithdementiaandcaregivers.
Chapter6:Toexploreandevaluateexistingdigitallifestoryworkappsthatareavailable
forpeoplewithdementiaandcaregivers.
Structureofthethesis
28
Thisthesisconsistsofsevenindividualchapters.Fivearebasedonjournalarticleswhich
havebeensubmittedforpublication(Chapter2,3,and4),orwillbesubmittedfor
publicationshortly(Chapter5and6).
Chapter1,thecurrentchapter,providesanoverviewofreminiscenceanddigitalLSW
includingabriefoverviewandtheoreticalbackground.
Chapter2isasystematicreviewexploringreminiscencetherapyfordementia.It‘setsthe
scene’ofthecurrentresearchlandscapefollowingtherecentpublicationsofsomenew
high-qualityRCTs.Thisisasummaryreview,followingmyroleinproducingthemost
recentCochranereviewofreminiscencetherapyfordementia(submittedJanuary2018),
andisfocusedonthedomainsofwell-being,cognition,mood,andcommunication.The
reviewincluded22randomisedcontrolledtrials,with16includedinthemeta-analysis.
Sub-groupanalysesofinterventionmodalityandsettingwerealsocarriedout.Thereview
highlightsthatreminiscencehassomepositive,butinconsistenteffectsinallfouroutcome
domains,whichvaryacrossinterventionmodalityandsetting.
Chapter3presentsaqualitativeexplorationofuserexperiencesofthreedifferent
implementationsofadigitalLSWservice.Theobjectiveofthisstudywastogaininsight
intoparticipantexperiencesoftheintervention,theadvantagesandlimitationsofusinga
technologicalinterfaceforLSW,andhowcontextimpactedparticipants'experiences.All
participantsreportedthattheyenjoyedtheintervention,foundituseful,andvaluedthe
abilitytoaddmultimediamaterialstothedigitallifestorybook.LimitedICTskillswerea
significantbarrierformanyparticipants,andsomeparticipantswithdementiafeltupset
orfrustratedattimesduringtheLSWsessions.Thischapterprovidesevidenceforthe
feasibility,andthepositiveimpactofasupporteddigitalLSWinterventionanddigitallife
storybook.
Chapter4isastudyofaself-guided,app-based,digitalLSWintervention,usingaCitizen
Scienceapproach.Theaimsofthisstudyweretoinvestigatethefeasibilityofadigitallife
storybookappandtheoverallinterventionapproach,andexploretheeffectsofthe
interventioninrelationtoqualityoflife,andusers'experienceswiththeapp.Todothis,
weassessedmomentarysessionfeedback,usagedata,quantitativemeasuresofwell-
being,andcarriedoutfollow-upphoneinterviews.Nosignificanteffectsorcorrelations
29
werefoundonanyoutcomemeasure.Engagementwiththeappwaslow,thoughit
appearedtoprovidesomeenjoymenttothosewhousedit.Qualitativefeedbackwas
varied,withrespondentscitingseveraldifferentreasonsfornot,ornolongerengaging
withtheapp.Theapproachshowssomepotential,butmoremotivatorsandfewerbarriers
arerequiredtoimproveengagementinfutureresearchandpractice.
Chapter5isanexplorationofthepreferencesofpeoplewithdementiaandtheir
caregivers,concerningdigitalLSWservices.Caregiverscompletedanonlinediscrete
choiceexperiment,whileparticipantswithdementiacompletedasimplified,online
survey.Aprivateone-to-oneinterventionsetting(ratherthanacommunitygroupsetting)
appearedtobethemostimportantattributetobothparticipantgroups,whileuserICT
skillsaffectedthepreferencesofbothgroups.
Chapter6isareviewoftouchscreenappsthatfacilitatedigitalLSWforpeoplewith
dementiaandtheircaregivers.Theaimofthereviewwastodocumentcurrentlyavailable
appsandevaluatetheiraccessibilityforpeoplewithdementia,throughuserreviewsand
evaluations.Thiswasdonewiththeviewtoprovidingpracticaladviceand
recommendationstoprospectiveuserswhilehighlightingpotentialimprovementsthat
canbemadebydeveloperstoimproveappaccessibility.Nineappswereevaluatedand
reviewedbypeoplewithdementia,orcaregiversofpeoplewithdementia.
Chapter7concludesthisthesis.Itbringstogetherthefindingsfromalloftheprevious
chapters,aswellasidentifyingtheimplicationsandlimitationsofthosefindings.The
possibledirectionsforfutureresearcharealsodiscussedinthisconcludingchapter.
Contributionofotherstothethesis
Aswellascontributionsfrommysupervisor,othershavecontributedtowardssome
chaptersinthethesis.Chapter2isbasedonaCochraneReview,inwhichMsEmmaFarrell
wasaco-author,andassistedwithscreeninganddataextraction.DrGillWindleprovided
helpfulfeedbackonearlydraftsofChapter3.MsAlliSuddabyassistedwithrecruitmentin
Chapter4.DrEmilyHolmesandDrSiobhanBourkeofferedadviceregardingthedesignof
thediscretechoiceexperimentinChapter5.InChapter6MsMariaCaulfieldcarriedoutan
independentsearchforapps,andDrPhilJoddrellprovidedanindependentevaluationof
theincludedapps.MembersoftheIrishDementiaWorkingGroup,andotherswhopreferr
toremainanonymousprovideduserreviewsinChapter6.
Chapter2.Reminiscencetherapyfordementia:Asystematicreviewoftheevidencefromrandomisedcontrolledtrials
31
Summary
Reminiscencetherapyisapopularpsychosocialinterventionthatiswidelyusedin
dementiacare.Itinvolvesthediscussionofpasteventsandexperienceswithothers,using
tangiblepromptstoevokememoriesorstimulateconversation.Thisreviewevaluatesthe
effectivenessofreminiscencetherapyforpeoplelivingwithdementia.Itincludesstudies
fromthespecialisedregisteroftheCochraneDementiaandCognitiveImprovementGroup
(ALOIS).Searchesyielded185recordsofwhich22studies(n=1,972)wereeligiblefor
inclusion.Themeta-analysisiscomprisedofdatafrom16studies(n=1,749).Thereview
includedfourlargemulti-centrehigh-qualitystudiesandseveralsmallerstudiesof
reasonablequality.Outcomesofinterestwerequalityoflife,communication,depressed
mood,andcognition.Reminiscencetherapyhasthepotentialtoimprovetheseoutcomes
atpost-treatmentandfollow-up,buteffectswereinconsistentacrossintervention
modalities(group/individual)andsettings(carehome/setting).Individualapproaches
wereassociatedwithimprovedcognitionandmood,whilegroupapproacheswerelinked
toimprovedcommunication.Theimpactonqualityoflifeappearedmostpromisingin
carehomesettings.Thereremainsmuchdiversityinreminiscenceapproaches,makingit
difficulttocomparethem.Developmentofmoredetailedmanualsandtrainingisneeded
sothatthatcommonapproachescanbeestablishedandshared.
TheresearchpresentedinthischapterhasbeensubmittedtoExpertReviewof
Neurotherapeuticsforconsiderationforpublication
32
Introduction
Reminiscencetherapyisoneofthemostpopularpsychosocialinterventionsforpeople
livingwithdementia.Althoughtherearemanyconceptualisationsofreminiscence,itis
typicallydescribedasthediscussionofpastactivities,events,andexperiences,usually
withtheaidoftangiblepromptsfromthepastsuchasphotographs,music,orfamiliar
objects(Woodsetal.,2005).Digitalreminiscencetherapyhasalsobecomepopularin
recentyears,takingadvantageofmultimediaresources,archives,andapps(Subramaniam
&Woods,2010).
Thedevelopmentofreminiscencetherapyisoftentracedbacktotheworkof
RobertButler(1963),whointroducedtheconceptoflifereview–thereflectiononone’s
lifeexperiences,andtherebypromotingadjustmentandintegrity.Previously,
reminiscencehadbeenperceivedasharmfulandpathological,butButler’sworkhelpedit
tobeviewedinanewlight,asawayofhelpingpeopletomakesenseandmeaningoflife,
andofpromotingadjustmentandintegrity.Thisinterpretationofreminiscencealsofitted
wellwithErikson’s(1950)latelifestageofdevelopment(IntegrityVDespair),inwhich
thepersonreflectsonlifeseekingmeaningandsatisfaction.
Reminiscencetherapyhaslongbeenassociatedwithawiderangeofdefinitions,
aims,andconceptualisations.Westerhofandcolleagues(2010)proposedthreemain
classificationsofreminiscence:simplereminiscence,lifereview,andlifereviewtherapy.
‘Simplereminiscence’istherecollectionandsharingofselectedpersonalandshared
memories,typicallyinagroupsetting.‘Lifereview’isastructuredandchronological
process,withtheaimofnavigatingandevaluatingpositiveandnegativememories.Itis
generallycarriedoutonaone-to-onebasis.‘Lifereviewtherapy’wasclassifiedasan
extensionoflifereview,andincludesadditionaltherapeuticelementswiththeaimof
helpingpeoplere-evaluatenegativelifeeventsinamorepositiveway.Anotherterm,‘life
storywork’,isfrequentlyassociatedwithlifereviewandotheraspectsofreminiscence.
Here,theemphasisisusuallyoncreatinganarrativebiography,oranothertangible
outcomesuchasamemoryboxorscrapbook,whichcanbeusedtobenefittheperson
afterthecompletionoftheintervention(McKeownetal.,2006;Murphy,2000).
33
Thefirstidentifiedstudyofreminiscencetherapyforpeoplewithdementiawas
almost40yearsago(Kiernat,1979).Soonafter,itwasintroducedintodementiacareby
Norris(1986)andimplementedwidely.Reminiscencetherapybecamepopularinpractice,
thoughresearchdidnotprogresswiththesamemomentum.However,reminiscencehas
consistentlybeenfoundtohavepositiveeffectsonolderpeoplewithdepressedmood
(Pinquart,Duberstein&Lyness,2007;Bohlmeijer,Smit&Cuijpers,2003)includingthose
livinginlong-termcareenvironments(Zhang,Hwu,Wu&Chang,2015).Similarly,life
reviewhasbeenfoundtobehelpfulinpreventingdepressionandimprovingqualityoflife
inolderadults(Bohlmeijer,Roemer,Cuijpers&Smit,2007;Potetal.,2010).Froma
cognitivestandpoint,reminiscencemaybevaluableforpeoplewithdementiaasthereis
anemphasisonlong-termmemories,whichpeoplewithdementia(likeallolderadults)
recallmoreoftenthanrecentmemories(Morris,1994).Similarly,earliermemoriesoften
representwell-rehearsedanecdotes,meaningthatreminiscencetherapymaybeauseful
toolforcommunicationbecausethepersonwithdementiacanspeakconfidentlyabout
thesememories.
Previousreviewsofreminiscencetherapyforpeoplewithdementiahaveyielded
somepositiveresults,thoughthequalityofincludedstudieshasbeenanongoingissue.In
thefirstCochraneReviewofthistopic,Woodsandcolleagues(2005)identifiedapositive
effectofreminiscencetherapyoncognitionscoresatlaterfollow-uptimepoints,butnotat
post-treatment.Just5studieswereincluded,andtheauthorsstressedtheneedforlarge,
high-qualitystudies,andtheuseofdetailedinterventionprotocolstoensurethat
interventionsreflecttruereminiscencetherapy(Woodsetal.,2005).Tworeviewsof7and
12studiesrespectively,foundthatreminiscencewasassociatedwithimprovedcognitive
functionanddepressedmood,thoughreviewauthorshighlightedthelowqualityof
studiesandabsenceofinterventionprotocols(Cotellietal.,2012;Huangetal.,2015).
Testadandcolleagues(2014)alsofoundthatreminiscencewasconsistentlyassociated
withimprovedmood,buthighlightedthevariationininterventionlengthandfrequency
amongthesixincludedstudies.Inareviewof10studies,Kwonandcolleagues(2013)
foundthatreminiscencewasassociatedwithimprovedcognitivefunctionandqualityof
life,thoughtheincludedstudieswerenotreferenced.Areviewofindividualreminiscence
therapyfoundthatstructuredlifereviewresultingintheproductionofalifestorybook
hadpositivepsychosocialoutcomesforpeoplewithdementia,whilelessstructuredsimple
reminiscenceinterventionswerenotaseffective(SubramaniamandWoods,2012).Kim
34
andcolleagues(2006)focusedongroupreminiscencetherapyandidentifiedasignificant
benefittocommunicationandcognition(Kimetal.,2006).Blake(2013)alsoinvestigated
theeffectsofgroupreminiscenceworkina‘mini-review'.Therewasasignificantbenefit
ondepressivesymptomsthoughagain,thequalityofthefourincludedstudieswaspoor.
Boththevolumeandqualityofreminiscenceresearchhasadvancedsignificantlyin
recentyears,particularlywiththerecentcompletionofnewlarge,multicentreRCTs(e.g.
Amievaetal.,2016;Charlesworthetal.,2016).Therefore,afurtherreviewofreminiscence
therapyfordementiaistimely.ThisreviewwascarriedoutwiththeCochrane
CollaborationCognitiveImpairmentandDementiaGroup(Woods,O’Philbin,Farrell,
Spector,&Orrell,2017).Theaimofthisreviewistoreviewthequalityandnatureof
evidencefromstudiesofreminiscencetherapyfordementia,andevaluateitseffectiveness
inthedomainsofqualityoflife,communication,depressedmood,andcognitivefunction.
35
Methods
SearchMethod
AsystematicsearchforRCTsevaluatingtheeffectsofreminiscencetherapyforpeople
withdementiawascarriedout.Thesearchterm‘reminiscence’wasusedtosearchthe
ALOISdatabasefourtimesbetweenOctober2015andApril2017.Studieswereidentified
fromthefollowingsources:
1. Majorhealthcaredatabases:Medline,Embase,Cinahl,PsycINFO,andLilacs
2. Trialregisters:ISRCTN;UMIN(Japan'sTrialRegister);theWHOportal(whichcovers
ClinicalTrials.gov;ISRCTN;theChineseClinicalTrialsRegister;theGermanClinical
TrialsRegister;theIranianRegistryofClinicalTrialsandtheNetherlandsNational
TrialsRegister,plusothers)
3. TheCochraneLibrary’sCentralRegisterofControlledTrials(CENTRAL)
4. Greyliteraturesources:ISIWebofKnowledgeConferenceProceedings;Indexto
Theses;AustralasianDigitalTheses
5. Additionalresources:TheAlzheimer'sSocietylibrary,publishedlettersintheBPS
(BritishPsychologicalSociety)magazine,personalcontactwithvariousspecialistsin
thefield.
Inclusioncriteria
Typesofstudies.RCTs(includingrandomisedclustertrialsandcrossovertrials)witha
passivecontrolgroupthatinvestigatedtheeffectsofreminiscencetherapyasan
interventionfordementiawereconsideredforthisreview.Studiesneededtobepublished
inapeer-reviewedjournal,andbeavailableinEnglish.Therewerenospecificcriteria
relatingtostudysettings.
Interventions.Interventionsneededtomeetthedefinitionofreminiscencetherapy
describedintheintroductionabove(Woodsetal.,2005)andbeaimedatpeoplewith
dementia.Theminimuminterventiondurationwas4weeksor6reminiscencesessions.
Studieswereincludedifacomparisonwasmadeto‘notreatment’,‘treatment-as-usual'or
passivecontrolconditions.Comparisonswithothertypesofactivitiesortherapieswere
notconsideredforthisreview.
36
Participants.Participantswithadiagnosisofdementia(ofanytypeorseverity)were
included.Thosewithmildcognitiveimpairment(MCI)werenotincluded.Familyor
professionalcaregiverswereincludedwherestudiesrecruiteddyads.
Outcomemeasures.Studiesthatassessedtheeffectsofareminiscencetherapy
interventiononpeoplewithdementiawereincluded,providedthatstandardised
assessments,ratingscales,orquestionnaireswereused.Outcomemeasurescouldbeself-
reported,proxy-reported,orobservational.Outcomesthatweremeasuredatpost-
treatment(typicallyimmediatelyafter,orwithinamonthoftheintervention)andfollow-
up(usually1monthto6monthspost-intervention)wereconsidered.Outcomesofinterest
were:
• Qualityoflife
• Communication
• Depressedmood
• Cognition
Adverseoutcomeswerealsoconsidered.Reminiscencemaybringupsomesador
upsettingmemories,whichshouldbeanticipatedandmanagedsensitivelybyfacilitators.
Potentialadverseoutcomeswereidentifiedthroughnegativeresponsesinthequalityof
lifeormoodofparticipants.
Dataextractionandmanagement
Tworeviewersworkedindependentlytoextractdescriptivestudycharacteristics,quality
information,andresultsofanalysesfrompublishedreports.Wherenecessary,additional
informationwasrequestedfromstudyauthors.Thisreviewisconcernedwithchange
scores(improvements/decrements)betweenbaselineandlaterassessments.Themean,
standarddeviation,andthenumberofparticipantsforeachtreatmentgroupateachtime
pointwereextracted.Therequiredsummarystatisticsfrombaselinewerethencalculated
byhand.Inthiscase,azerocorrelationbetweenbaselineandlaterassessmentswas
assumed.Thisisaconservativemethodwhichoverestimatesthestandarddeviationofthe
changefrombaselinebutisconsideredtobepreferableinameta-analysis.Reviewers
37
comparedandreachedconsensusontheextracteddataandcalculatedsummarystatistics.
TheinformationwasrecordedandenteredintoReviewManager(RevMan)5.3software
(2014).
Thereviewauthorssoughttoobtaindatafromintentiontotreatanalyses.Where
thiswasnotavailable,theyextractedthedatareportedonthosewhocompletedthetrials.
Incross-overtrials,onlydatafromthefirstinterventionphasewereincluded.Where
studiesusedclusterrandomisation,thiswasadjustedforifthestudywasofsufficientsize.
Tworeviewauthorsindependentlyassessedthequalityofeachstudyandratedit
usingthemethodsandguidelinesintheCochraneHandbookofSystematicReviewsof
Interventions(Higgins&Green,2011).Clustertrialswerealsoassessedforadditional
biases.
Dataanalysis
RevMan5.3software(2014)wasused.Themeta-analysespresentedoverallestimatesof
thetreatmentdifferencefromafixed-effectsmodel.Heterogeneitywasassessedusinga
standardChi-squarestatisticandani2statistic.Tointerpretheterogeneity,Cochrane
guidance(Higgins&Greene,2011)wasfollowed(i.e.0%to40%mightnotbeimportant;
30%to60%mayrepresentmoderateheterogeneity,50%to90%mayrepresent
substantialheterogeneity;75%to100%isconsiderableheterogeneity).Wheretherewere
highlevelsofheterogeneityofthetreatmenteffectbetweenstudies,arandom-effects
modelwasused.Thisproduceswiderconfidenceintervalsthanafixed-effectsmodel.
Wherepooledtrialsusedthesamemeasuretoassessanoutcome,themeandifference
(MD)wasused.Wherepooledtrialsuseddifferentmeasurestoassessthesameoutcome,
thestandardisedmeandifference(SMD)wasused.Wherestudiesusedmorethanone
instrumenttomeasurethesameoutcome,theanalysiswasconductedusingthemost
commonorextensivemeasure.
38
Results
Trials
Fromtheinitialsetofreferencesidentifiedbytheupdatedsystematicsearchessincethe
previousreview(Woodsetal.,2005),185additionalrecordswereidentifiedacrossfour
searches.Recordswereindependentlyassessedscreenedbytwostudyauthors(EF&
LO’P)whothenreachedaconsensusoninclusion/exclusion.Theoriginalreview(Woods
etal.,2005)includedfivestudies(Baines,Saxby&Ehlert,1987;Goldwasser,Auerbach&
Harkins,1987;Lai,Chi&Kayser-Jones,2004;Morgan,2000;Thorgrimsen,Schweitzer&
Orrell,2002).However,theMorgan(2000)studyisnowapublishedjournalarticle
(Morgan&Woods,2012)ratherthanadoctoralthesis.Sixteennewstudiesmetthereview
inclusioncriteria(Akanumaetal.,2011,Amievaetal.,2016,Azcurra,2012;Charlesworth
etal.,2016;Gonzalez,Mayordomo,Torres,Sales&Melendez2015;Haight,Gibson&
Michel,2006;Hsiehetal.,2010;Ito,Meguro,Akanuma,Ishii&Mori,2007;Melendez,
Torres,Redondo,Mayordomo&Sales,2015;O’Sheaetal.,2014;Sarkämoetal.,2013;
Subramaniametal.,2013;Tadaka&Kanagawa,2007;VanBogaertetal.,2016;Woodset
al.,2012b;Yamagami,Takayama,Maki&Yamaguchi,2012).Onestudyrecruited
participantswithAlzheimer’sdisease(AD)andVascularDementia(VD)butanalysedthe
twoparticipantgroupsseparatelywithadifferentcontrolgroupforeachdiseasetype
(Tadaka&Kanagawa,2007).Forthisreview,thereviewauthorsconsideredthereportto
betwoseparatestudies:Tadaka&Kanagawa(2007a)includingparticipantswithAD,and
TadakaandKanagawa(2007b)includingparticipantswithVD.Therefore,atotalof22
studieswereincludedinthereview.Characteristicsofincludedstudiesarepresentedin
Table2.1.Sixwereexcludedfromthemeta-analysesastheywereratedashavingan
unclearriskofselectionbiasforrandomisation(Akanumaetal.,2011;Bainesetal.,1987;
Goldwasseretal.,1987;Gonzalezetal.,2015;Hsiehetal.,2010;Yamagamietal.,2012).
Thereviewauthorsattemptedtocontacttheauthorsofthemorerecentexcludedstudies
forclarificationonrandomisationmethodsbutdidnotreceivearesponse.
Participants,settings,dementiatypeandseverity
Datafrom1,972participants(ordyads)areincludedinthisreview.Theaverage
participantwasover75yearsofage.Fourteenstudiesrecruitedparticipantsfrom
residential/hospitalcaresettings,whileeightrecruitedcommunity-dwellingparticipants
39
(SeeTable2.1).Interventionstookplaceinthecarehomeswhereparticipantsresided,or
communitylocationssuchasdaycentres.
Allstudiesrecruitedparticipantswithadiagnosisofdementia.Althoughmostdidnot
specifyadiagnosistypeinrecruitment,threespecificallyrecruitedpeoplewithadiagnosis
ofAD(Azcurra,2012;Gonzalezetal.,2015;Melendezetal.,2015)andonespecifieda
diagnosisofVD(Itoetal.,2007).Moststudiessoughttorecruitparticipantsinthemild
to/ormoderatestagesofdementia,typicallyusingtheCDR,GDS,orMMSEtoscreen
potentialparticipants.
ReminiscenceInterventions
Moststudiesimplementedsimplereminiscenceinterventionswherebyparticipantstook
partindiscussionsaboutspecificthemesofthepastinsmallgroups(e.g.Akanumaetal.,
2011,Amievaetal.,2016,Bainesetal.,1987;Charlesworthetal.,2016;Gonzalezetal.,
2015;Goldwasseretal.,1987;Hsiehetal.,2010;Itoetal.,2007;Melendezetal.,2015;
O’Sheaetal.,2014;Sarkämoetal.,2013;Tadaka&Kanagawa,2007a;Tadaka&Kanagawa,
2007b;Thorgrimsenetal.,2002;Woodsetal,2012b;Yamagamietal.,2012).Inonestudy,
carestaffweretrainedtodeliversimplereminiscenceinsmallgroupsfollowinga
structurededucationprogramme(O’Sheaetal.,2014).Fivestudiesimplementedthemore
structuredapproachoflifereview(Azcurra,2012;Haightetal.,2006;Laietal.,2004;
Morgan&Woods,2012;Subramaniametal.,2013).Onetrial(VanBogaertetal.,2016)
usedastandardisedreminiscenceinterventionbasedontheSolCosmodel(Soltys&Coats,
1994),whileanotherimplementedamusicreminiscenceintervention(Sarkämoetal.,
2013).Threestudies(Charlesworthetal.,2016;Thorgrimsenetal.,2002;Woodsetal.,
2012b)implementedjointreminiscenceinterventions,followingtheRemembering
YesterdayCaringToday(RYCT)program.ThiswasdevelopedbySchweitzerandBruce
(2008)andisalargegroup-basedapproach,bringingtogetherpeoplewithdementiaand
familycaregiverswithafocusonactivereminiscence.
Thelengthofthereminiscenceinterventionsrangedfrom4weeks(theminimum
numberforinclusioninthereview)to24months.Threestudiesheldmonthlyor6weekly
maintenancesessionsaftertheinitialinterview(Amievaetal.,2016;Charlesworthetal.,
2016;Woodsetal.,2012b).Thetotalmedianpossiblereminiscenceexposuretimewas
11.5hours(3-39hours),whilethemedianindividualsessionlengthwasapproximately53
40
minutes(30minutes-2hours).Intwostudiesthesessionlengthwasunclear(O'Sheaetal.,
2014;Thorgrimsenetal.,2002).
QualityofStudies
Studieswereratedashavingalowrisk(+),unclearrisk(?),orhighrisk(-)ofbiasineach
qualitydomain.RatingsarereportedinTable2.1.
Randomisation(selectionbias).Allstudiesrandomisedparticipantstotreatmentor
controlgroups.Thiswasacriterionforinclusioninthereview.Severalusedcomputerised
randomisation,thoughsomeusedmorebasicmethods,suchassealedenvelopes.Three
studiesusedclusterrandomisation(Gonzalezetal.,2015;Melendezetal.,2015;O’Sheaet
al.,2014),andthreeusedanaccreditedtrialsunit(Charlesworthetal.,2016;Woodsetal.,
2012b;Subramaniametal.,2013).Asmentionedpreviously,sixstudiesdidnotdetailthe
methodofrandomisationandwereexcludedfromthemeta-analyses.
Allocationconcealment(selectionbias).Allocationconcealmentdetailswererarely
reportedindetail,evenwhenfurtherinformationwasrequested.Repliesgenerallystated
thattherehadbeenadequateallocationconcealment,andinthesecases,goodpracticehas
beenassumed.Low-riskmethodsincludedtheuseofindependentresearchers,remote
services,andsealedenvelopes.
Blindness.Aswithmostpsychosocialinterventions,participantscannotbeblindedtothe
experienceoftakingpartinanintervention(ornottakingpartinthecaseofcontrol
groups)makingperformancebiasdifficulttoevaluate.
Themajorityofstudiesusedindependentresearcherswhowereblindedtogroup
allocationtocompletetheoutcomeassessments.Proxy-ratedmeasuresweretypically
completedbyapersonwhoknewtheparticipantandcouldreliablycomment.
Contaminationwasariskincarehomestudiesinwhichcontrolandintervention
participantsresidedandsocialisedtogether.Twostudiesseemedtohaveatleastone
personwhoworkedinthecarehomeimplementtheintervention,meaningthataspectsof
reminiscencecouldhavebeencarriedoverintodailycareandcontaminatecontrol
41
conditions(Goldwasseretal.,1987;Haightetal.,2006).However,closeadherencetothe
studyprotocolwouldhaveminimisedthisrisk.
Incompleteoutcomedata(attritionbias).Fivesmallstudiesreportedzeroattrition
(Akunumaetal.,2011;Bainesetal.,1987;Haightetal.,2006;Morgan&Woods,2012;
Thorgrimsenetal.,2002).Thehighestattritionratewas28%(23%fromtheintervention
groupand34%fromthecontrolgroup)whichwasreportedbyoneofthelargest
community-basedstudies(Woodsetal.,2012b).
Dataextractedfromseveralstudieswerefromintentiontotreatanalyses(Amieva
etal.,2016;Azcurra,2012;Charlesworthetal.,2016;Laietal.,2004;Melendezetal.,
2015;O’Sheaetal.,2014;Woodsetal.,2012b).Otherstudiescarriedouttheanalyses
withoutdatafromdropouts(Hsiehetal.,2010;Särkämöetal.,2013;Subramaniametal.,
2013;Tadaka&Kanagawa,2007a;Tadaka&Kanagawa,2007b;VanBogaertetal.,2016
andYamagamietal.,2012).OnestudyreportedresultsfrombothaperprotocolandITT
analysis,butonlydatafromtheper-protocolanalysiscouldbeextracted(Itoetal.,2007).
Inanolderstudy,oneparticipantdroppedout,andtheauthorsrandomlyexcludedone
participantfromeachofthetwoothergroups(Goldwasserandcolleagues,1987).The
mostcommonreportedreasonsforattritionwerethehealthofthepersonwithdementia,
death,thehealthofthecaregiver,andthepersonwithdementiamovingintoresidential
care.Onetrialdidnotreportattritionrates(Gonzalezetal.,2015).
Selectivereporting.Therewasnoevidenceofselectivereportinginanyoftheincluded
studies.Studiesthathadaprotocol(i.e.Charlesworthetal.,2016;O’Sheaetal.,2014;Van
Bogaertetal.,2016;Woodsetal.,2012b)detailedthesameoutcomemeasuresinthe
protocolasthepublishedpapers,whileotherstudiesreportedresultsonalloutcome
measuresdetailedinthemethodssection.
Otherbias.Clustertrialswereassessedforadditionalbiasesassociatedwithclustering
suchasrecruitmentbias,baselineimbalance,lossofclusters,andcomparabilitywith
individuallyrandomisedtrials.
Facilitatortrainingandsupervision.O’Sheaandcolleagues(2014)providedthemost
trainingtoreminiscencefacilitators.Theyranastructurededucation-basedreminiscence
42
programinwhichcarehomestaffreceivedthreedaysoftraining.Telephonesupportand
sitevisitsaugmentedthis.Fivestudiesdidnotreportdetailsonfacilitatortrainingor
reminiscenceexperience(Akanuma2011;Goldwasser1987;Gonzalez2015;Hsieh2010;
Ito2007).Othersdidnotspecifythenumberoftraininghoursbutreportedthatthe
interventionwasdeliveredbyappropriatefacilitators,suchaspsychologistsor
gerontologists(Melendezetal.,2015;Morgan,2012;Särkämöetal.,2013;Subramaniam
etal.,2013;Tadaka2007a;Tadaka2007b).Intheremainderofstudies,between4hours
and1dayoftrainingwasprovidedtofacilitators.
TreatmentProtocol.Theuseofaprotocolorstructureinreminiscencetherapy
interventionsisimportanttoensurethattheinterventionisdeliveredasintended,and
reflectstruereminiscencetherapy.Allstudiesreportedusingaprotocolorstructure,
thoughthelevelofdetailvariedconsiderably.Somestudiesoutlinedsessionstructures
whileothersusedstandardizedreminiscenceinterventions,themostpopularofwhich
wereHaight’sLifeReviewModelandLifeReviewExperiencingForm(Haight,1992;
Haightetal.,2006;Morgan&Woods,2012;Subramaniametal.,2013)andtheRYCT
program(Schweitzer&Bruce,2008;Charlesworthetal.,2016;Thorgrimsenetal.,2002;
Woodsetal,2012b)
43
Table2.1Descriptionofincludedstudiesandbiasratings
StudyID Participants Intervention Duration/Frequency
Randomisation
Allocation
concealment
Blinding
Attritionbias
Selective
reporting
Otherbias
Training&
supervision
Intervention
protocol
Akanumaet
al.2011
24carehomeresidents
withVDGroupRT 1hr/weekfor12weeks ? ? + + + n/a ? +
Amievaetal.
2016
326communityresidents
withAD*JointGroupRT
90min/weekfor
12weeks+maintenance
90min/6weeksfor21
months.
+ + + ? + n/a + +
Azcurra201290carehomeresidents
withAD*Individuallifereview
60minstwice/weekfor
12weeks+ + + + + n/a + +
Bainesetal.
1987
10carehomeresidents
withmod-severe
cognitiveimpairment*
GroupRT30mins,5times/week
for4weeks? ? + + + n/a + +
Charlesworth
etal.2016
144communityresidents
withadementia
diagnosis*
JointGroupRT
(RYCTprogram)
2hrs/weekfor12weeks
+maintenance
2hrs/monthfor7
months.
+ + + + + n/a + +
Goldwasseret
al.1987
20carehomeresidents
withadementia
diagnosis*
GroupRT30mins,twice/weekfor
5weeks.? ? ? ? + n/a ? +
Gonzalezetal.
2015
42carehomeresidents
withADIntegrativeGroupRT
60mins/weekfor
10weeks.? ? ? + + ? ? +
44
StudyID Participants Intervention Duration/Frequency
Randomisation
Allocation
concealment
Blinding
Attritionbias
Selective
reporting
Otherbias
Training&
supervision
Intervention
protocol
Haightetal.
2006
30carehomeresidents
withadementiadiagnosis
Individuallifereview
withproductionofa
lifestorybook
60mins/weekfor
6weeks+ ? ? + + n/a + +
Hsiehetal.
2010
61carehomeresidents
withadementiadiagnosisGroupRT
40-50minsonce/week
for12weeks? ? ? ? + n/a ? +
Itoetal.200740carehomeresidents
withVD*GroupRT
60mins/weekfor12
weeks.+ + + + + n/a ? +
Laietal.2004
66carehomeresidents
withadementia
diagnosis*
Individuallifereview
withtheproduction
ofalifestorybook
30mins/weekfor
6weeks+ ? + + + n/a + +
Melendezet
al.2015
30communityresidents
withADGroupRT
30mins,twice/weekfor
10weeks+ + + + + ? + +
Morgan&
Woods2012
17carehomeresidents
withadementiadiagnosis
Individuallifereview
(Haight’slifereview
Model).
30-60mins/weekfor
12weeks+ ? ? + + n/a + +
O’Sheaetal.
2014
304carehomeresidents
withadementiadiagnosisGroupRT
Durationunspecified.3-
4times/weekfor
14weeks(range12–17
weeks)
+ + + + + + + +
Subramaniam
etal.2013
24carehomeresidents
withadementiadiagnosis
Individuallifereview
withproductionof
LifeStorybook
1hour/weekforaverage
of12weeks.+ + + + + n/a + +
45
StudyID Participants Intervention Duration/Frequency
Randomisation
Allocation
concealment
Blinding
Attritionbias
Selective
reporting
Otherbias
Training&
supervision
Intervention
protocol
Särkamoetal.
2013
59communityresidents
withadementiadiagnosis
(andacaregiver)
Musiclisteninggroup
reminiscence
90min/weekfor
10weeks
+ + + ? + n/a + +
Tadaka&
Kanagawa
2007a
24communityresidents
withADGroupRT 90min/weekfor8weeks + + ? + + n/a + +
Tadaka&
Kanagawa
2007b
36communityresidents
withVDGroupRT 90min/weekfor8weeks + + ? + + n/a + +
Thorgrimsen
etal.2002
11communityresidents
withadementiadiagnosis
(andacaregiver)
GroupRT(RYCT)Durationunspecified.
Once/weekfor18weeks+ + + + + n/a + +
VanBogaert
etal.2016
72carehomeresidents
withadementiadiagnosis
IndividualRT(SolCos
model)
45mins,twice/weekfor
8weeks.+ + + + + n/a + +
Woodsetal.
2012b
488communityresidents
withadementiadiagnosis
(andtheircaregivers)
JointGroupRT
(RYCT)
2hrs/weekfor12weeks
+maintenance
2hrs/monthfor
7months
+ + + + + n/a + +
Yamagamiet
al.2012
54carehomeresidents
withadementia
diagnosis.
GroupRT60mins,twice/weekfor
12weeks? ? ? + + n/a + +
*Thenumberofparticipantsingroupsrelevanttothecurrentreview,ratherthanthetotalnumberofparticipantsinthestudy.
46
Meta-analysis
AcronymsforeachmeasurearedetailedinAppendixB.
Self-reportedqualityoflife–overall.(SeeFigure2.1).Fortheoverallevaluationofthe
effectsofreminiscenceonqualityoflifepost-treatment,eightstudies(1,060participants)
wereincludedinthemeta-analysis.Nosignificantdifferencesbetweenreminiscenceand
controlgroupswereobservedatpost-treatment(randomeffects,SMD0.11,95%CI-0.12
to0.33;Z=0.95,P=0.34).
Fivestudies,with874participants,alsomeasuredqualityoflifeatfollow-up
(Amievaetal.,2016;Azcurra,2012;Charlesworthetal.,2016;Särkämöetal.,2013;Woods
etal.,2012b).Allfiveimplementedgroupreminiscenceinterventions.Again,theSMDwas
notstatisticallysignificant(randomeffects,SMD0.35,95%CI-0.11to0.80;Z=1.50,P=
0.13).
Self-reportedqualityoflife–modality.Onesmallstudyof23participantsmeasuredself-
reportedqualityoflifeatpost-treatmentfollowinganindividuallifereviewintervention
(Subramaniametal.,2013).Resultsindicatedthattheinterventionhadasignificant
positiveeffectonself-reportedqualityoflife(MD7.0points,95%CI-0.14to14.13,Z=
1.92,P=0.05.
Sevenstudiesimplementedgroupinterventions,ofwhichsixusedtheQoL-AD
(Amievaetal.,2016;Azcurra,2012;Charlesworthetal.,2016;O’Sheaetal.,2014;
Särkämöetal.,2013;Thorgrimsenetal.,2002;Woodsetal.,2012b).Theanalysisincluded
1,037participantsintotal,andnosignificanteffectwasidentified(SMD0.06,95%CI-0.15
to0.28,Z=0.59,P=0.55).Thefindingsforgroupreminiscenceatfollow-uptimepoints
havebeendetailedabove(Section3.5.2).
Self-reportedqualityoflife-setting.Threecarehomestudieswereincludedinthemeta-
analysis(SeeFigure2.1).Afixedeffectsanalysisofdatafrom193participantsshoweda
statisticallysignificantSMDof0.46(95%CI0.18to0.75,Z=3.17,P=0.002)infavourof
reminiscenceinterventions.Atfollow-up,onecare-homestudywith88participants
47
(Azcurra,2012)reportedsignificanteffectontheSRQOL(MD9.8points,95%CI7.05to
12.55,Z=6.98,P<0.00001).
Fivestudieswerecommunity-basedandincludedatotalof867participants(See
Figure2.1).AllfiveusedtheQoL-ADscale,andthemeandifferencebetweenreminiscence
andcontrolgroupswasnotstatisticallysignificant(fixedeffects,MD=-0.57points,95%CI
-1.37to0.22;Z=1.41,P=0.16).Incontrast,themeandifferenceacrossthetwocarehome
studies(O’Sheaetal.,2014;Subramaniametal.,2013)thatusedtheQoL-ADwas
significant,andmuchlargerat3.58points(n=105;95%CI0.66to6.51,Z=2.40,P=
0.02).Fourstudies(Amievaetal.,2016;Charlesworthetal.,2016;Särkämöetal.,2013;
Woodsetal.,2012b)measuredtheeffectsofreminiscenceonthequalityoflifeof786
community-dwellingparticipantsatfollowup.Themeandifference(QoL-AD,fixedeffects)
was0.17points(95%CI-0.79to1.13),whichwasnotstatisticallysignificant(Z=0.35,P=
0.73).
Proxyratedqualityoflife.Fivestudieswith763participantsusedtheproxyversionof
theQoL-AD,inwhichafamilycarerorcarestaffmemberratedtheperson'squalityoflife
(Charlesworthetal.,2016;O’Sheaetal.,2014;Särkämöetal.,2013;Thorgrimsenetal.,
2002;Woodsetal.,2012b).Allfiveimplementedgroupreminiscenceinterventions.A
random-effectsmodelrevealedaMDof0.35points(95%CI-1.23to1.94)whichwasnot
statisticallysignificant(Z=0.44,P=0.66).Threealsomeasuredatfollow-uptimepoints
(Charlesworthetal.,2016;Särkämöetal.,2013;Woodsetal.,2012b)andagain,no
significantdifferencewasidentified(MD-0.15points;95%CI-1.14to0.83,Z=0.30,P=
0.76).
Observedqualityoflife.TwostudiesusedtheWIB,whichisanobservationalmeasureof
qualityoflife(Azcurra,2012;Laietal.,2004).Itiscompletedduringsixhours(minimum)
ofobservationofthepersonundertakingtheirusualactivities.Therewasnoindicationof
aneffectonWIBscoresatpost-treatmentacross154carehomeresidents(MD0.00points,
95%CI-0.17to0.18,Z=0.06,P=0.95)oratfollow-up(randomeffects,MD-0.40points,
95%CI-1.34to0.54,Z=0.83,P=0.41).
48
Communicationandinteraction–overall.(SeeFigure2.2).Sixstudiesusingan
assortmentofcommunicationmeasureswereincludedinthepost-treatmentanalysis(in
thisanalysis,negativescoresindicateimprovedcommunication).Datafrom249
participantswereincluded.Astatisticallysignificantdifferencefavouringreminiscence
wasidentifiedatpost-treatment(SMD=-0.51,95%CI-0.97to-0.05;Z=2.18,P=0.03).
Atfollowup,fourstudiesincluding204participantsreportedcommunicationoutcome
data(Azcurra,2012;Laietal.,2004;Tadaka&Kanagawa,2007a;Tadaka&Kanagawa,
2007b).Again,asignificanteffectfavouringreminiscencewasidentified(SMD=-0.49,
95%CI-0.77to-0.21;Z=3.40,P=0.0007).
Communicationandinteraction–modality.Twostudiesofindividualreminiscence,
including96participants,reportedpost-treatmentdatafrommeasuresofcommunication
(Haightetal.,2006;Laietal.,2004).Theoveralleffectsize(SMD,randomeffects)was-
0.74(95%CI-2.38to0.89)whichwasnotstatisticallysignificant(Z=0.89,P=0.37).In
contrast,thepost-treatmentanalysisoffourstudiesofgroupreminiscence,including153
Figure2.1.Meta-analysisSelf-ReportedQualityofLife
49
participants(Azcurra,2012;Tadaka&Kanagawa,2007a;Tadaka&Kanagawa,2007b;
Thorgrimsenetal.,2002),didindicateastatisticallysignificantbenefitofreminiscencein
relationtocommunication(SMD=-0.39,95%CI-0.71to-0.06;Z=2.34,P=0.02).
Longer-termfollow-updatawereavailablefromonestudyofindividual
reminiscence,withnoevidenceofaneffect(Laietal.,2004).Datafromthreestudies(N=
138)ofgroupreminiscencewereavailable(Azcurra,2012;Tadaka&Kanagawa,2007a;
Tadaka&Kanagawa,2007b).Similartopost-treatment,asignificantbenefitwasidentified
(SMD-0.63points,95%CI-0.97to-0.29;Z=3.60,p=0.0003).
Communicationandinteraction–setting.Threestudieswerecommunity-basedand
involved65participants.Asignificanteffectoncommunicationandinteractionwas
identified(SMD-0.57,95%CI-1.08to-0.06;Z=2.21,P=0.03).Twostudies,including50
participants,alsoreportedcommunicationandinteractionoutcomesatfollowup(Tadaka
&Kanagawa,2007a;Tadaka&Kanagawa,2007b).Bothusedthewithdrawalsubscaleof
theMOSES.Themeandifferencewas-3.64points(95%CI-7.21to-0.06),whichwas
statisticallysignificant(Z=2.00,P=0.05).
Threestudies,involving184participants,tookplaceincarehomes(SeeFigure2.2).Here,
nosignificanteffectwasidentified(randomeffects,SMD-0.52,95%CI-1.29to0.24;Z=
1.34,P=0.18).Twocarehomestudies(Azcurra,2012;Laietal.,2004),bothusingtheSES,
alsoreporteddatafrom154participantsatfollowupandfoundastatisticallysignificant
MDof-0.93points(randomeffects,95%CI-1.77to-0.09;Z=2.16,P=0.03).
Depressedmood–overall.(SeeFigure2.3).Inmoodanalyses,negativescoreswere
indicativeofimprovementsinmood.Tenstudies,including973participants,includeda
measureofdepressedmoodinpost-treatmentevaluation.Anon-significantSMDfavouring
reminiscenceinterventionswasidentified(SMD-0.03,95%CI-0.15to0.10;Z=0.40,P=
0.69).Atfollow-up,datafrom747participantsacrosssixstudieswereincluded.Again,the
SMDwasnotstatisticallysignificant(randomeffects,SMD-0.16,95%CI-0.43to0.11;Z=
1.15,P=0.25).
Depressedmood–modality.Fourstudies,involving131participants,usedanindividual
reminiscenceapproach(Haightetal.,2006;Morgan&Woods,2012;Subramaniametal.,
2013;VanBogaertetal.,2014).Theeffectondepressedmoodwasstatisticallysignificant
50
infavourofreminiscence(SMD-0.41,95%CI-0.76to-0.06,Z=2.32,P=0.02).Onthe
otherhand,asignificantdifferencewasnotidentifiedintheanalysisofthesix
studies(N=842)ofgroupreminiscence(SMD0.03,95%CI-0.10to0.17,Z=0.49,P=0.63).
Onesmallstudyofindividualreminiscencemeasureddepressionatfollow-upusing
theGDS-SF(Morgan&Woods,2012),andreportedasignificantbenefitofreminiscence
(MD=-3.70,95%CI-5.74to-1.66,Z=3.56,P=0.0004).Fivestudiesofgroup
reminiscencereportedmeasuresofdepressedmoodatfollow-up,thoughallwere
community-basedmeaningthattheresultswereconfoundedwiththeinterventionsetting.
TheSMDwas-0.04(95%CI-0.19to0.11)whichwasnotstatisticallysignificant(Z=0.52,
P=0.60).
Figure2.2.Meta-analysiscommunication
51
Depressedmood–setting.Inthefivecarehomestudies(Figure2.3,N=187)noeffectof
reminiscencetherapywasidentifiedatpost-treatment(SMD-0.19,95%CI-0.48to0.10;Z
=1.32,P=0.19).Thefivecommunity-basedstudies(N=786)allinvolvedgroup
interventionsandalsoshowednoeffectondepressedmood(SMD0.01,95%CI-0.13to
0.16,Z=0.20,P=0.84).Theresultsatlonger-termfollow-upareoutlinedabove(Depressed
mood–modality)asallgroupstudieswerecommunity-based.Asinglecarehomestudy
(Morgan,2000)alsoprovidedfollow-updatafrom17participantsandidentifieda
significantbenefitofreminiscencetodepressedmood(MD=-3.70,95%CI-5.74to-1.66,Z
=3.56,P=0.0004)
Figure2.3.Meta-analysisdepressedmood
52
Cognition–overall.(SeeFigure2.4).Wherestudiesusedmorethanonemeasureof
cognition,theanalysiswasconductedwiththemostcommonorextensiveassessment.For
theAMIandAMI(E)thiswasthePSSsub-scale.Datafrom14studiesinvolving1,219
participantswereanalysed.Astatisticallysignificantdifferencefavouringreminiscence
wasidentified(SMD=0.11,95%CI0.00to0.23;Z=1.97;P=0.05).
TheMMSEwasthemostwidelyusedcognitivemeasure,employedinninestudies(n=
437).Afixedeffectsanalysisofdatatakenfromthismeasureyieldedastatistically
significantMDof1.87points(95%CI0.54to3.20;Z=2.76,P=0.006).Ontheotherhand,
asignificanteffectofreminiscencewasnotidentifiedoneithersub-scaleoftheAMIand
extendedAMI(E),whichwereusedbyfourstudies(n=456).
Ninestudiesreportedfollow-updatafromatotalof983participants.Neithertheoverall
effectsize(SMD=0.04,95%CI-0.09to0.17;Z=0.61,P=0.54)northedifferenceson
individualmeasuresweresignificantwhenassessedindividually.TheMDontheMMSEat
follow-upwas1.8points(95%CI-0.06to3.65)andnotsignificant(Z=1.90,P=0.06).
Cognition–modality.Individualreminiscenceinterventionswereimplementedbyfive
studies(Haightetal.,2006;Laietal.,2004;Morgan&Woods,2012;Subramaniametal.,
2013;VanBogaertetal.,2016).Datafrom196participantsrevealedasignificanteffect
sizeinfavourofreminiscence(SMD=0.32,95%CI0.04to0.61;Z=2.22,P=0.03).
Incontrast,asignificanteffectwasnotidentifiedacrosstheninestudiesofgroup
reminiscence,involving1023participants(SMD0.07,95%CI-0.05to0.20;Z=1.17,P=
0.24).However,MMSEdatafor281participantswasreportedbysixstudiesofgroup
reminiscenceatpost-treatment.Whendatafromthismeasurewasconsidered
independently,astatisticallysignificanteffectinfavourofgroupreminiscencewas
identified(MD1.81points,95%CI0.17to3.46;Z=2.16,P=0.03).
Atfollow-up,asignificanteffectwasnotfoundinanalysesofeithermodality.
Cognition–setting.Sixstudies,involving230participants,werebasedincarehomes
(SeeFigure2.4).Asignificanteffectinfavourofreminiscencewasidentified(SMD0.29,
95%CI0.03to0.56;Z=2.19,P=0.03).Eightstudies(n=989)werecarriedoutin
53
communitysettings.Thebenefittocognitivefunctioninthiscontextwasnotstatistically
significant(SMD0.07,95%CI-0.05to0.20,Z=1.13,P=0.26).Atfollow-up,nosignificant
effectswereidentifiedincarehome(2studies,83participants)orcommunitysettings(7
studies,900participants).
Adverseoutcomes.Whilenoadverseeventswereobservedontheoutcomemeasuresof
interest,twostudiesreportedincidencesofadverseoutcomes.Charlesworthand
Figure2.4.Meta-analysiscognition
54
colleagues(2016)reportedthree'seriousadverseevents'thatwereattributabletothe
RYCTintervention.Specificdetailswerenotgiven,thoughitwasreportedthatthese
eventsdidnotleadtowithdrawalfromthetrial.Woodsandcolleagues(2012)reported
oneadverseevent,inwhichaparticipantbecameupsetinoneoftheinterventionsessions
relatingtomarriage.Therewasadetailedprotocolinplacefordealingwithdistressing
events,whichwasimplemented.Whileadverseeventsareregrettable,itisimportantto
viewthemincontextofthetotalnumberofparticipantsandinterventionsessions.
55
Discussion
Thisisthelargestreviewofreminiscencetherapyforpeoplewithdementiatodate.It
includes22RCTsanddatafrommorethan1,900participants.Theresultsofthemeta-
analyses,whichincluded16studiesanddatafrom1,749participants,providethe
strongestevidencethusfarthatreminiscencetherapycanbenefitpeoplewithdementiain
thedomainsofqualityoflife,communication,mood,andcognition.However,theseeffects
arerelativelysmallandinconsistentacrossreminiscencemodalities(group/individual)
andsettings(carehome/community).
Includedstudiescovervariousreminiscenceactivitiesincludingsimple
reminiscence,lifereview,jointreminiscencework,andmusiclisteningreminiscence.
Interventionintensitiesanddurationsvariedwidelyacrossincludedstudies.Inadditionto
treatment-as-usualgroups,somestudiesalsocomparedreminiscencetoalternative
activitiesormeasuredadditionaloutcomes,butthesewerebeyondthescopeofthe
currentreview.Despitegrowinginterestindigitalreminiscence,nostudiesofthismetthe
inclusioncriteria.
Thequalityandvolumeofstudieshaveimprovedsinceearlierreviewsof
reminiscencetherapyfordementia.Severalincludedstudiesareverylargeandofhigh
quality,whilesomesmallerstudiesofreasonablequalityarealsoincluded.Thevolumeof
datamadeitpossibletoexcludestudiesthatwereratedashavinganunclearriskof
randomisationbiasfromthemeta-analyses,withoutunderminingthem.Furthermore,
thereweresufficientdatatocarryoutsubgroupanalysesofinterventionmodalitiesand
settingsforthefirsttime.Althoughmostincludedstudiesreportedusinganintervention
protocolorstructure,severaldidnotreporttheseinsufficientdetail.Innumerouscases,
additionalstudyinformationhadtoberequestedaspublishedreportsdidnotinclude
enoughdetail,particularlyinrelationtorandomisationandallocationconcealment.
Reminiscencetherapyhadasignificantbenefitonself-reportedqualityoflifeat
bothpost-treatmentandfollow-up,butonlyincarehomesettings.Onestudyofindividual
reminiscencemeasuredself-reportedqualityoflifeatpost-treatment,andfoundthat
reminiscencehadasignificantbenefit(Subramaniametal.,2013).Nosignificanteffectwas
56
identifiedinstudiesofgroupreminiscence,orcommunity-basedstudies.Similarly,a
significanteffectwasnotidentifiedonmeasuresofobservedorproxyratedqualityoflife.
Therewasasignificantimprovementincommunicationscoresofreminiscence
groupscomparedtocontrolgroupsatbothpost-treatmentandfollow-up.However,in
sub-groupanalysesofinterventionmodality,abenefitwasonlyobservedingroup
reminiscenceapproaches.Inthesubgroupanalysisofsetting,therewasasignificant
benefittocommunicationincommunitysettingsatpost-treatment,andinboth
communityandcarehomesettingsatfollow-up.
Therewasnobenefitofreminiscencetodepressedmoodoverall.However,in
subgroupanalyses,individualreminiscencewasassociatedwithimprovementsin
depressedmoodatbothpost-treatmentandfollow-up.Thoughitshouldbenotedthatjust
onesmallstudymeasureddepressedmoodatfollow-up(Morgan&Woods,2012).No
significanteffectswereobservedinsubgroupanalysesofgroupreminiscence,community-
basedreminiscence,orcarehomebasedreminiscence.
Inrelationtocognitiveoutcomes,thosewhoreceivedreminiscencetherapy
exhibitedgreaterimprovementsthancontrolsatpost-treatment.However,insubgroup
analyses,asignificanteffectwasidentifiedonlywhentheinterventionwasindividualor
basedinacarehome.Atfollow-up,nosignificanteffectswereidentifiedinanysubgroup
analysis.WhenMMSEscoreswereconsideredindependently,resultsofthisreview(nine
studies,N=437,MD=1.87;95%CI0.54to3.20)bearsimilaritytotheCochraneReviewof
CognitiveStimulationfordementia(Woodsetal.,2012a;N=600,MD=1.74points;95%
CI1.13to2.36).However,whentheoveralleffectisconsidered,resultsofcognitive
stimulation(14studies,N=658,SMD=0.41,95%CI0.25to0.57)appearmorepositive
thanthoseinthecurrentreview(14studies,N=1229,SMD=0.11,95%CI0.00to0.23).
Resultsofthecurrentreviewareinlinewithpreviousreviewsofreminiscence
therapyfordementia.Improvementsincognitionandmoodreflectedhaveoftenbeen
cited(Blake,2013;Cotellietal.,2012;Huangetal.,2015;Kwonetal.,2013;Subramaniam
&Woods,2012,Testadetal.,2014;Woodsetal.,2005).Huangandcolleagues(2015)also
delineatedbetweencarehomeandcommunitysettings,andsimilartothecurrentstudy,
theeffectsofreminiscenceonmoodwerestrongerincarehomesettings.Similarly,
57
individualreminiscenceandreminiscenceincarehomeshavepreviouslybeenassociated
withimprovedqualityoflife(Subramaniam&Woods,2012).Communicationhasbeen
measuredlessofteninpreviousreviews,butasignificantbenefitofgroupreminiscenceto
communicationseeninthecurrentreviewhasbeenidentifiedpreviously(Kimetal.,
2006).Theresultsofthecurrentreviewsuggestthatcommunicationisnowanimportant
outcomeofreminiscencetherapytoconsider,particularlyingroup-basedreminiscence
therapy.
Limitations
Therangeofreminiscenceinterventionsacrossincludedstudiesmakesitdifficultto
compareandcontrastresults.Studiesthatimplementedindividualreminiscence
interventionsweretypicallysmallandtookplaceincarehomes,whilegroupinterventions
weregenerallymuchlargerandmostlytookplaceincommunitysettings.Therefore,itis
difficulttobecertainofwhatunderpinsanydifferencesinoutcomesbetweenindividual
andgroupinterventions.Similarly,itwasnotpossibletodistinguishbetweensimpleand
integrativeapproachesorbetweenvaryinglengthsofinterventionexposureinthe
analyses.Whiletheresultsofthisreviewindicatethepotentialforreminiscenceto
improvepsychosocialoutcomesforpeoplewithdementia,itisdifficulttotranslatewhat
thesesignificantdifferencesactuallymeanintermsofreal-lifebenefittopeoplewith
dementia.Formostmeasures,therearecurrentlynointernationalagreed-upon
benchmarkstoapplyinthissituation.
Conclusion
Reminiscencetherapycannowbeviewedasaneco-psychosocialintervention,witha
credibleevidencebase.Thereispromisingevidencethatitcanimprovequalityoflife,
communication,depressedmood,andcognitionforpeoplewithdementia,buteffectsvary
considerablyacrossinterventionmodalitiesandsettings.Furthermore,theeffectsare
mostlysmallinsize.Individualreminiscencemaybenefitcognitionandmood,whilegroup
reminiscencemayhavepositiveoutcomesinrelationtocommunication.Benefitsto
qualityoflifeseemmostpromisingincarehomesettings.Infutureresearch,alarge-scale
RCTofindividualreminiscenceworkwouldbehelpfultoascertainifthepromisingresults
inthecurrentreviewcanbereplicatedonalargerscale.Effortsshouldbemadetolearn
moreaboutthecharacteristicsofparticipantsthatareassociatedwithbetteroutcomes
andlevelsofengagementsothatinterventionscanbetailoredandtargetedeffectivelyand
58
efficiently.Finally,thedevelopmentoruseofmoredetailedstandardisedmanualswould
behelpfulsothatcommonapproachescanbesharedanddeveloped.
59
Chapter3:Implementingdigitallifestoryworkforpeoplewithdementia:The
relevanceofcontexttouserexperience.
60
Summary
DigitalLifeStoryWork(LSW)isfastbecomingamajortrendinreminiscenceworkfor
peoplewithdementia.Multimediamaterials(i.e.music,video,audionarration)canbe
combinedwithconventionalresources(i.e.photographsandtext)andaddedtodigitallife
storybookstocreateamultisensoryexperience.Thepurposeofthisstudywastoexplore
userexperiencesofthreedifferentimplementationsofdigitalLSW.Sixteenparticipants
includingpeoplewithdementia(n=6),familycaregivers(n=6),andcarestaffworkingin
adementiacarehome(n=4)tookpart.Participantswereinterviewedabouttheir
experienceoflearningtouseadigitallifestorybookinoneofthreecontexts:acommunity
group;one-to-onesessionsathome;orinacarehome.Peoplewithdementiaandfamily
caregiverstookpartinweeklyworkshopsfor6weeks,whilecarestaffreceived6weeksof
trainingandwerethenencouragedtousedigitallifestorybookswithresidents.Thematic
analyseswerecarriedoutoneachdatasetseparatelysothatexperiencescouldbe
comparedandcontrasted.Participantsenjoyedtheintervention,foundituseful,and
valuedtheabilitytousemultimediastimuliinthedigitallifestorybooks.Limited
informationandcommunicationtechnology(ICT)skillswasthemostfrequentlycited
barrier,andthedigitallifestorybookswereusedforsomeadditionalunanticipated,but
usefulpurposes.Themesandsubthemesfromeachparticipantgroupineachcontextare
presentedinthischapter.Theresultsofthischapterprovideevidenceforthefeasibility
andpositiveimpactofasupporteddigitalLSWintervention,andtheuseofdigitallife
storybooksinthreecontexts.Resultsalsoprovideusefulinsightandfeedbackforthe
futuredevelopmentandimplementationofthisapproachinresearchandpractice.
ThischapterhasrecentlybeensubmittedtoTheInternationalJournalofReminiscenceand
LifeReviewforconsiderationforpublication.
61
Introduction
LifeStoryWork(LSW)isapopularpsychosocialinterventionfordementia,inwhich
peoplearegiventheopportunitytotalkaboutandhaveimportantpartsoftheirlife
recordedinsomeway.Thismakesupalifestory,whichcanthenbeusedtobenefitthe
personinthepresent(McKeown,etal.,2006;Murphy,2000;).LSWfallsunderthe
‘umbrella’ofreminiscenceworkorreminiscencetherapy.
Inareviewof11conventionallifestoryresources(e.g.downloadableforms,
booklets,booksandboxedmultimediaresources)forpeoplewithdementiaandtheir
caregivers,Kindellandcolleagues(2014)foundthat‘makingconnections’wasarecurrent
themeacrosstheobjectivesoftheresources.TheyproposedthatLSWcanfoster
connectionsinfourdistinctways:emotionalconnections,interactionalconnections,
practicalcareconnections,andbuildingnewconnections.Emotionalconnectionsseekto
providepsychologicalsupporttopeoplewithdementiaandtheirrelatives,withthe
objectiveofpromotingpositiveself-identity.Ininteractionalconnections,atangiblelife
story‘resource'isproducedtoenablecontinuedenjoymentthroughsharedknowledge.
Practicalcareconnectionsaimtoprovideappropriatecareandactivitiesfortheperson
withdementiausingautobiographicalinformationlearnedthroughLSW.Finally,building
newconnectionsreferstotheformationofpositiverelationshipsbetweenpeoplewith
dementia,relatives,andcarestaffthroughcollaborativework.
Withgrowingaccessibilitytoinformationandcommunicationtechnology(ICT),
LSWinterventionsinvolvingthecreationofadigitalmultimediatype‘book’havebecome
morepopular(Woods&Subramaniam,2017).Anevolvingapproachtothisisthrougha
seriesofworkshopsorsessions,inwhichpeoplewithdementiaareassistedtoplayan
activeroleincreatingtheirlifestorybook.Althoughresearchintothisapproachisstill
developing,andsettingsandimplementationsvarygreatly,resultshavebeenmostly
positive(Damianakis,Crete-Nishihata,Smith,Baecker,&Marziali,2009;Ludwin&
Capstick,2015;Lynch,Reilly,Lowe,Rhoda,&McCarron,2016;Massimietal.,2008;
Stenhouse,Tait,Hardy,&Sumner,2013;Subramaniam&Woods,2016).
LudwinandCapstick(2015)workedone-to-onewithtenpeoplewithdementia
whowerelivinginacarehometocreatepersonallifestoryvideosbasedontheirearlylife.
62
Thefilmsconsistedofpersonalandgenericphotographs,withparticipants’narrationor
singingprovidingthesoundtrack.Usingamixedmethodsapproach,theauthorsidentified
asignificanteffectoftheinterventiononparticipants’well-beingandsocialparticipation
overthesix-weekintervention.Itwasreportedthattheinterventionhelpedparticipants
toleavethedementia‘label’behindastheydiscussedtheirdiverseinterestsandlife
experienceswithfacilitators.Similarly,Massimiandcolleagues(2008)workedwitha
singlepersonwithdementiatodevelophislifestoryoveronemonth.Theparticipant
enjoyedtheexperienceandshowedimprovementsonmeasuresofself-identityand
apathy.Qualitativeevidencealsorevealedthatithelpedhisrelativesto‘re-interpret’his
condition.Morerecently,SubramaniamandWoods(2016)workedone-on-onewith
peoplewithdementiaincarehomestoconvertconventionallifestorybooksintolifestory
movies.Fiveoutofsixparticipantsshowedimprovementsonqualityoflifeand
autobiographicalmeasuresafterreceivingthedigitallifestorybook.Athematicanalysis
alsorevealedthatparticipants,relatives,andcarestaffconsideredthedigitallifestoriesa
usefultooltohelptriggermemories,andthatparticipants(mostly)respondedpositively
toviewingthem.Mulvennaandcolleagues(2017)tookaslightlydifferentapproachand
providedfiveweeksoftrainingto28peoplewithdementiaandtheircaregiversin
reminiscence,usingareminiscenceappcalledInspireD.Followingthetraining,
participantswereencouragedtousetheappover12weeks,andusagedatawascollected
throughtheapp.Theyfoundthatparticipantsusedtheappapproximatelyonceperweek
andthatforthemostpart,peoplewithdementiausedtheappforreminiscence,while
caregiversuseditforbothreminiscingandcompilingstimuli.
Digitallifestorieshavealsobeencreatedingroupsettings,thoughthereisless
researchonthis.Stenhouseandcolleagues(2013)evaluatedafour-daydigitalstory-
makingworkshopforpeoplewithearly-stagedementia.Intheworkshops,participants
weresupportedbyfacilitatorstocreatetheirdigitallifestoriesusingphotographs,audio
narration,andmusic.Athematicanalysisofthefacilitators’reflectionssuggestedthat
participantsbecamemoreconfidentandengagedwiththeactivityandothers,andwere
observedtohaveagreatersenseofpurposeandimprovedspeech.
OtherresearchhasexploredtrainingprofessionalcarestafftoimplementLSW
interventionswithpeopleintheircare.Astudyofdigitallifestorybooksforpeoplewith
intellectualdisabilitiesanddementia(orwhowereatriskofdevelopingit),foundthat
63
participants,relatives,andstaffapprovedofthedigitallifestorybooks,andconsidered
themapowerfulmeansofsupportingperson-centredcareandmeaningfulconversation
(Lynchetal.,2016).Inastudyinvolvingtencarehomes,itwasfoundthatsupportingand
trainingstafftodeliveraconventionalreminiscenceinterventionhadseveralsignificant
benefits.Staffhadbetterattitudestowardsindividualcontactwithresidents,agreater
senseofpersonalaccomplishment,reducedemotionalexhaustion,reduced
depersonalisation,abettersenseoftheirprofessionalroleanddevelopment,andbetter
self-ratedmentalhealthscores.Mostratedtheinterventionasahelpfultoolfor
communicatingwithresidents.Staffinhalfofthecarehomesmentionedthattheyfeltthe
useofreminiscenceledtogreatercontactwithresidentsandmorepositiveexperiences.
However,theresultsshowedweakevidenceforaneffectoftheinterventiononcarehome
residents(Gudex,Horsted,Jensen,Kjer,&Soerensen,2010).Clarke,HansonandRoss
(2003)foundthattheimplementationcanbeanissueduetotimeconstraintsoralackof
supportfrommanagement.Despiteinitialenthusiasm,staffonaunitinanNHShospital
wereunabletoimplementaLSWinterventionwithpeopleintheircarebecausetheywere
toobusy.However,whentheresearchteamemployedasupportworkerwhocould
prioritisetheintervention,itwasmoresuccessful.Theresultinglifestoriesencouraged
practitionerstoseethepersonbehindthe‘patient'andtobuildandstrengthen
relationshipswiththemandtheirrelatives.
Thereissomeconcernthatrecallingcertainmemoriesortopicsmaycausedistress
toparticipants,andthereisariskthatthepersonmightfixateonthepast(Bruce&
Schweitzer,2008;McKeown,Gridley,&Savitch,2017;Ryanetal.,2017).However,studies
comparingparticipantresponsestoreminiscencehavegenerallyfoundthatnegative
responsesarerelativelyrarecomparedtopositiveresponses(Damianakisetal.,2010;
Sarne-Fleischmann&Tractinsky,2008;Subramaniam,Woods,&Whitaker,2013).It
shouldalsobenotedthatreminiscenceandLSWmaynotappealtoeveryone(Coleman,
1986).Forexample,Clarkeandcolleagues(2003)foundthatmorereservedindividuals
didnotwanttoshareinformationwhileothershadpainfulmemoriestheydidnotwantto
revisit.
Followingareviewofdigitalreminiscencesresourcesforpeoplewithdementiaand
theircaregivers,SubramaniamandWoods(2010)concludedthattheapproachisfeasible
butmoreresearchisneededtounderstandhowtobestuseICT-basedreminiscence
64
resourcestherapeuticallywithpeoplelivingwithdementiaandtheircaregivers.Digital
LSWresearchhasbecomemorepopularinrecentyears,butthereisstillaneedtoexplore
theexperiencesofstakeholdersacrossdifferentsettingsandimplementations.Research
intodigitalLSWinprofessionalcaresettingsremainsscarce,butitisimportanttoexplore
whatsupportsimplementation,anditsimpactonstakeholders.
Aim
TheaimofthisstudyistoexploreuserexperiencesofadigitalLSWinterventioninvolving
thecreationofadigitallifestorybook,fromtheperspectivesofcommunity-dwelling
peoplewithdementiaandtheirfamilycaregivers,andcarestaffworkingincarehomes.
Weaimtoaddressthefollowingresearchquestions:
1. Whatareparticipants’experiencesofdigitalLSWservicedeliveredthroughweekly
workshops?
2. Whataretheadvantagesanddisadvantagesofusingatechnologicalinterfacefor
LSW?
3. Howdoesthecontext(e.g.thesetting)affectuserexperiencesofadigitalLSW
intervention?
65
Methods
BackgroundtotheIntervention
BookofYou1isaWelshsocialenterprisethatorganisesanddeliversLSWworkshopsin
community,individual,andcarehomecontexts.Ithascreatedadigitallifestorybookapp
thatenablesuserstocombinephoto,text,video,music,andaudionarrationtoconstructa
digitallifestorybookonacomputer,tabletcomputer,ormobilephone(SeeFigure3.1).
Workshopstakeplaceindividuallyintheperson'shomeorinagroupsettingin
communitylocationssuchaslibrariesorcommunitycentres.Afacilitatorworkswith
participantseachweekfor6consecutiveweekstoteachthemhowtousethedigitallife
storybookandsupportthemtobegincreatingtheirown.Incarehomecontexts,Bookof
Youprovide4weeksoftrainingtocarestaff(2hoursperweek)whocanthencreate
digitallifestorybooksforresidents.Inallcontexts,theworkshopfacilitatorsare
volunteers,whohavereceivedonedayoftraininginreminiscence,digitalLSW,andthe
digitallifestorybookapp.BookofYoureceivesexternalfundingandgrants,meaningthat
therewasnofinancialcosttoanyparticipantorcarehomeinthecurrentstudy.This
researchwassecondarytotheBookofYouworkshops,meaningthattheywerenot
explicitlyorganisedforthepurposesofthisresearch.
Participants
ParticipantsweredrawnfromthosewhoweresigneduptobeginBookofYouworkshops
buthadnotstartedthemyet.Carestaffwererecruitedfromcarehomesthathadjust
completedtheworkshopsorwerenearingcompletion.Overall,12dyads(consistingofa
personwithdementiaandtheircaregiver)and12staffmembers(across2carehomes)
wereapproached.
Peoplewithdementia-caregiverdyads.Tobeeligibletoparticipateinthestudy,
participantsneededtomeettheDSM-IV(APA,2013)criteriafordementiaofanytype,and
beinthemildtomoderatestages.DementiaseveritywasassessedusingtheClinical
DementiaRatingscale(CDR;Hughesetal.,1982).Participantsneededtobeableto
communicateandunderstandcommunication.Thiswasassessedusingrelevantitemson
theCliftonAssessmentProceduresfortheElderly(CAPE;Pattie&Gilleard,1979).
1http://www.bookofyou.co.uk
66
Figure3.1.ExamplesoftheBookofYouuserinterface
Participantswereonlyincludedifjudgedtohavethementalcapacitytogiveconsentandif
theyhadarelativewillingandabletoparticipate.TheMentalCapacityAct2005
(DepartmentofHealth,2005)andBritishPsychologicalSocietyguidelineswereusedto
judgethis.Exclusioncriteriaincludedthepresenceofactivemajorpsychiatricdisorders,
uncorrectedsensoryimpairment,andahighlevelofagitation.
Onthefirstdayofgroupworkshops(beforetheycommenced),theresearcher
explainedtheresearchstudy,distributedinformationsheets,andinvitedattendeestotake
part.Theywereassuredthattheycouldtakepartintheinterventionwithoutparticipating
intheresearch,andthatthiswouldhavenoeffectonhowtheinterventionwasdelivered.
Potentialparticipantsfromtheindividualcontextwereinitiallyinformedaboutthe
researchandgivenaninformationsheetbytheBookofYoufacilitator,thoughitwas
stressedthattakingpartwasnotrequiredtoparticipateintheintervention.Thosewho
expressedinterestwerecontactedbytheresearcher,whophonedthemtoarrangeatime
tomeetthemtoexplaintheresearchandinvitethemtotakepart.Inbothcontexts,the
researcherexplainedtheinformationsheettopotentialparticipants,answeredany
questions,andcheckediftheywereeligibletoparticipate.Thosewhomettheinclusion
criteriawereaskedtosignaconsentform.Introductoryinterviewswerecarriedout
directlybeforethefirstworkshop.Informationsheetsandconsentformsarepresentedin
AppendixC.
Professionalcarestaff.Tobeeligibletoparticipate,carestaffneededtobe
employedinadementiacarehomeandhaveparticipatedintheLSWworkshops.The
67
researcherapproachedparticipatingcarehomesandaskedpermissiontoapproachstaff
memberstotakepartintheresearch.Thecarehomeactivitiescoordinatorinformedthe
researcherofwhohadtakenpartintheworkshops.Theresearcherdistributed
informationsheetsandexplainedthestudytopotentialparticipants.Iftheywishedto
participate,theresearcherdistributedconsentformsandarrangedatimetocomeback
andmeetforthefirstinterview,aftertheworkshopswerecomplete.Informationsheets
andconsentformsarepresentedinAppendixC.
EthicalApproval
EthicalapprovalwasgivenbytheBangorUniversityHealthcareandMedicalSciences
AcademicEthicsCommittee.
Intervention–Personwithdementia-caregiverdyads
Personwithdementia-caregiverdyadstookpartinagroupcontextoranindividual
context.ForBookofYou,teachingparticipantshowtousetheappwasapriority,but
often,reminiscencenaturallyoccurredasaresultofworkingwithitemsandmaterials
fromthepast.Groupcontextparticipantsattendedweeklyhour-longworkshopsintheir
localityforsixweeks.Workshopswereheldinalocaldaycentrebutwereattendedby
peoplewithdementiaandtheircaregiverswhowerelivingintheirownhomes.
ParticipantswerecontactedbytheBookofYoufacilitatorbeforethefirstworkshopand
encouragedtobringphotographsoritemsthattheywantedtoaddtotheirdigitallife
storybook.Individualcontextparticipantswerevisitedintheirhomesbyafacilitatoronce
aweekforsixweeks.Therefore,therewerefewertimeconstraintsandworkshopswere
generallybetweenoneandtwohourslong.Thefacilitatorcontactedparticipantstheweek
beforethefirstworkshopandencouragedthemtopreparesomematerialstoincludein
theirdigitallifestorybook.Wherepossible,workshopswereruninconsecutiveweeks.
Eachdyadwasgivenapasswordandusernamesotheycouldaccesstheirbookbetween
workshopsiftheywished.Participantswereshownhowtouseandadddifferentmaterials
totheirbookseachweek(AppendixD).Thefacilitatordemonstratedhowtousethedigital
lifestorybookwhilehelpingparticipantstocreatetheirown.
Intervention-Carestaffparticipants
Workshopsweretwohoursperweekoverfourconsecutiveweeks.Thecarehomeshad
Wi-Fiaccess,andallstaffmemberscarriedtabletcomputers(providedbythecarehome)
68
whileontheirshifttorecordcarenotes.Thecarehomemanagersinvitedstaffmembersto
participateintheworkshops,butitwasnotmandatory.Notallstaffmemberscouldattend
everyweekduetoshiftwork.Workshopswereflexibleandworkedaroundwhat
participantswantedtolearnratherthanasetplan,thoughthefacilitatorensuredthat
everytemplatewascovered(AppendixD).Eachstaffmemberselectedoneresidentwith
whomtolearntheprocessofcreatingalifestorybook.Duringworkshops,thefacilitator
demonstratedhowtoworkwithaparticulartemplateandparticipantstrieditfor
themselvesusingmaterialsrelevanttotheresidenttheyhadchosen(withpermission).
Staffmemberswereabletoaccessthedigitallifestorybooksbetweenworkshopsifthey
wishedtoconsolidatetheirknowledge.Afterthefour-weekperiodended,afollow-up
workshopwasarrangedfourweekslaterincaseanyextraassistanceortrainingwas
needed.
Datacollection
Peoplewithdementiaandfamilycaregivers.Participantswereinterviewedthreetimes
overthecourseoftheintervention:beforethefirstworkshop,afterthethirdworkshop,
andafterthefinalworkshop.Thiswastogetasenseofparticipants’experiencesoverthe
courseoftheintervention.Interviewsweresemi-structuredandfollowedageneraltopic
guide,whichwaspartlyinformedbytheresearchquestions(AppendixE).Interviews
wererecordedusinganencrypteddigitalrecorder.Thefirstinterviewwasbriefand
introductory,withtheaimofestablishingarelationshipbetweentheinterviewerand
participants.Thepersonwithdementiaandtheircaregiverinthegroupcontextwere
interviewedtogetherforthefirstinterview,andindividuallyforthesecondandthird.
Theytookplaceduringtheworkshopsinaquietadjoiningroom.Participantsfromthe
individualcontextswereinterviewedtogetherintheirhome,astheyindicatedthatthey
wouldpreferthis.
Carestaffparticipants.Carestaffparticipantswereinterviewedtwice,4weeksafterthe
finaltrainingworkshop,andthen4weeksafterthefirstinterview.Interviewsweresemi-
structured,andageneraltopicguidewasused(AppendixE).Withthepermissionof
management,interviewstookplaceduringworkhours,inaquietareaofthecarehome.
69
DataAnalysis
Datawereanalysedusingdeductivethematicanalyseswherebytheresearchquestions
informedthetopicguide(Braun&Clarke,2006).Theanalysiswasconductedusing
methodologysetforthbyBraunandClarke(2006),inwhichtherearesixindividualsteps.
Thefirststep,familiarisation,wasachievedbytranscribingthesemi-structuredinterviews
verbatimandthencarefullyreadingthroughthetranscriptstwice.Transcriptswerethen
checkedagainsttheinterviewrecordingsforaccuracyandmissingdata.Inthesecond
step,transcriptswerecarefullyreread,andinitialbasiccodeswereextracted.Thiswas
donebymanuallynotingpatternsinthemarginsofthetranscripts.Thebasiccodeswere
thenorganisedintopossiblethemesandsubthemesinthethirdstepusingathematicmap.
Thefourthstepinvolvedreviewingandrefiningthesethemesandsubthemesintwo
phases.Whilere-readingtheoriginaldataset,anydatathatmayhavebeenmissedinthe
originalcodingwaschecked.Thethematicmapwasrefinedassomethemesmergedwhile
otherswerediscarded.Afterestablishingthatthethemesandsubthemes‘worked’with
thedataset,theywerenamedanddefinedinthefifthstep.Thesethemeswerethen
discussedwiththesecondauthor(BW).Relevantextractsfromthedatasetwereplaced
intothecorrespondingthemesandsubthemesinatable.Thistablewasusedtorefineand
checkeachthemeagainstthecorrespondingdataextractstoascertainiftheywere
coherentandrelevant.Inthesixthandfinalstep,thereportwasproduced.Datafromeach
contextwereanalysedseparatelysothatexperiencesineachcontextcouldbeexplored
andcomparedtotheothers.
70
Results
ParticipantCharacteristics
DespiterelativelyhighinterestintheLSWworkshops,justhalfofthoseapproachedwere
eligibleorwishedtoparticipateintheresearch(Table3.1).Ingeneral,peoplewere
concernedabouttimeorwerealreadytakingpartinotherresearchstudies.
Table3.1.Recruitmentofparticipants
Action N
Peoplewithdementia
Invitedtotakepart 12
Agreedtotakepart 6
Familycaregivers
Invitedtotakepart 12
Agreedtotakepart 6
Carestaff
Invitedtotakepart 12
Agreedtotakepart 4
Peoplewithdementia.Sixpeoplewithdementiatookpartintheresearch(3from
eachcontext).ParticipantcharacteristicsaresummarisedinTable3.2.Oneparticipant
fromthegroupcontextdroppedoutaftertheinitialintroductoryinterview,asshedidnot
wanttobeinterviewed.Shecontinuedtoattendtheworkshopswithhercaregiveruntil
herhealthdeclinedfourweekslater.Groupparticipantsthattookpartwerefromthe
sameworkshopgroup.
FamilyCaregivers.Eachpersonwithdementiaparticipatedwithafamily
caregiver.CharacteristicsoffamilycaregiversaresummarisedinTable3.2.Thecaregiver
oftheparticipantwithdementiawhodroppedoutwithdrewfromtheworkshopsandthe
researchfollowingthesecondinterview,duetohiswife’spoorhealth.
71
Professionalcaregivers.Fourprofessionalcaregiversworkingintwoprivatecare
homesinNorthWalesoptedtotakepartintheresearch.Onewasateamleader,andthe
othersweregeneralcarestaff.Theteamleaderwastheonlymaleparticipantinthis
group.ThreeofthefourcarestaffparticipantshadbasictoaverageICTskills(self-
reported)whileonereportedhavinglittletonoexperiencewithICT.
Personwithdementiadata
Thereweretwothemesinthedatafromparticipantswithdementia,eachwithtwo
subthemes.Thesewere‘Memories’includingthesubthemes‘evokingmemories’and
‘sharingmemories’,and‘InterventionLimitations’,includingthesubthemes‘”it’snotfor
everyone”’and‘ICTasabarrier’.
Memories
Evokingmemories.Forallparticipants,doingdigitalLSW(athomeandduring
workshops)evokedmemoriesandwas(mostly)anenjoyableexperience.AlthoughMrD
struggledtoparticipateintheinterviews,hespoketotheresearcheratlength
abouthisearliermemorieswithevidentenjoymentandpride.
"Theonlywaytogetmovingisifyoutellhim,alrightIcan'trememberanything
sometimesbutoftenjustalittlethingjumpsin,andIknowwhatI'vedone,andIfeel
chuffed"(MrK,individualcontext).
"Itjogsyourmemory.Youthinkaboutthingsyouhaven'tthoughtaboutforyears"
(MrJ,groupcontext).
"Well,IthinkthisisabigthingtohelpmymemorieswhichissomethingIneed
actuallyit'ssoannoyingnothavingthememoriessothehelpisgoingtobeideal"(Mr
M,individualcontext).
Sharingmemories.Theopportunitytosharememorieswithfamilyandfuture
generationswasparticularlyimportanttoMrMandMrJ.
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"I'mreallypleasednowit'sallbeingdoneitmeanswe'vegotmylifestorywhichis
wonderful.ImeantheGrandchildrenwillenjoyitIthinkthey'lllookbackinyearsand
thinkGrandaddidthisandGrandaddidthatyouknow"(MrM,individualcontext).
"Itwouldbegoodforthemtoknowabouttheirrelatives...IwishIhad…Iknownothing
aboutmyDad"(MrJ,groupcontext).
InterventionLimitations
‘It’snotforeveryone’.MrsBfeltthatLSWwasn'tforherandspentthefollowing
workshopsfocusingonmusicsheliked,whileMrJacknowledgedthatLSWisn'tsomething
everyonewouldenjoy.
“…Imeanwhat’sbadaboutbringingbackmemoriesandthingslikethat.Imeanit
ain’teverybody'scupoftea,butitdependsonyourownattitude"(MrJ,group
context).
“Emwell,Idon'twantmylifestory"(Mrs.B,groupcontext).
Duringtheinterviews,MrKfrequentlyspokeabouthisfrustrationatnotbeingableto
remembernames,faces,andplaces.Inthefirstworkshop,MrDbecameupsetashe
recalledafamilytragedywhendiscussinghischildhood.
"YeahbecausethethingthatupsetsmeisIforgetthenamesofpeopleandit'shard
andhowcanIputit,I'mnotupset,butIthinkwhydon’tIrememberandityeah…"
(MrK,groupcontext).
ICTasabarrier.The‘digital’natureofthelifestorybookwasasignificantbarrier.
Althoughparticipantsparticipatedintheworkshopsandenjoyedreminiscing,none
interactedwiththeirlifestorybookindependently.
"IhavesortofgivenuponalotofthingswiththecomputerbecauseIcouldn'tworkit
properly"(MrR,groupcontext).
73
Table3.2.Descriptivecharacteristicsofparticipantswithdementiaandfamilycaregivers
Participant
Type
Person
with
dementia
Age
Bracket
(years)
Gender
Self-
reported
ICTskills
Dementia
severity
(CDR)
Family
caregiver
Relationshi
p
Self-
reported
ICTskills
Community
group
participants
MrJ 70-85 Male None Mild MrsJ WifeAverage
MrR 70-85 Male None Moderate MsE SisterNone
MrsB 70-85 Female None Mild MrB Husband Basic
Individual
context
participants
MrD 70-85 Male None Moderate MrsD Wife Average
MrK 70-85 Male None Moderate MsK Partner Good
MrM 70-85 Male None Mild MrsM Wife Basic
74
"Idon'tliketoplayonthatone(tabletcomputer)incaseIdosomethingwrong…"(MrM,
individualcontext).
Caregiverdata
Threethemeswereidentified,andareoutlinedinTable3.3.
Expectationsandusage.
Expectationsandapprehension.Intheinitialinterview,caregiverswereasked
abouttheirexpectationsoftheintervention.Somewereapprehensiveabouthowtheir
relativewouldfindtheexperience,whileothershadpositiveexpectations.
"I'minterestedtoseewhatwillhappenreally[laughter]"(MsE,groupcontext).
"I'mapprehensiveforMrKreally,notforme.I'mabitconcernedabouthimbecause
hedoestendtogetquiteupsetsometimesifmemoriescomealongandhethinksabout
things.Hedoesn'tgetmadlyupsethejustgetsabitupset,andIdon'twanthimtobe
upsetIwanthimtohavepleasureoutofit,doyouknowwhatImean?"(Ms.K,
individualcontext).
Usingthedigitallifestorybook.Caregiverswereaskedaboutusingthedigitallife
storybooksbetweenworkshops.Groupcontextcaregiversreportedlowusage,thoughMr
RandMsEhaddiscussionsaboutthepastwiththeirrelative,whichmayhavebeen
promptedbytheworkshops.
"Wediddiscusswhathecouldrememberandwherehe'dbeenyousee.Thisishis
problemyousee.Hecan'tremember.Wewentbackallthewaytowhenhewasinthe
army,andthatiswhenheremembered...sohedoesn'trememberthingsovertheyears
afterthat.That'stheproblem"(MsE,groupcontext).
Ontheotherhand,caregiversfromtheindividualcontextreportedusingthedigitallife
storybookmoreoftenbetweenworkshops,particularlyastheweeksprogressedandthey
becamemoreconfidentwithusingit.
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Table3.3.Findingsfromtheperspectiveoffamilycaregivers
Theme Subtheme
Expectationsandusage
Expectationsandapprehension
Usingthedigitallifestorybook
Differentplans
Interventioncontext:
individualversusgroup
Groupcontext
IndividualContext
ICTconsiderationsMultimediaaccessandcapacity
Limitationsorlearning?
“YeahallweekI'vebeenatit,wellhe'sbeentellingme,andI'vebeendoingit"(MsK,
individualcontext).
“UsuallyonaSaturdayafternoonthefamilyallarriveandsortofwhenwe’rewaiting
forthemtocome‘ohwe’llgetitoutandhavealittlelookatit”(Mrs.D,individual
context).
Differentplans.Groupcontextparticipantsviewedthedigitallifestorybookas
somethingtouseinthefutureasamemoryaidwhenthepersonwithdementia’s
conditionworsened,ratherthanameaningfulactivitytoengagewithnow.
“…It’sgoingtoprobablyhelpher,probablynotimmediately,butprobablyabitlater
onwhenthings…wellyouknowthey’renotgoingtogetbetterarethey?Soitwill
probablyhelpwhenthingsgetabitfurtheralongtheline"(MrR,groupcontext).
“Itissomethingtoholdontointhefuture.Wemaynotneedit.Itmaynotgetasbad
aswethinkitmightgetbutem...It’salwayswisetohaveitthere”(Mrs.J,group
context).
Ontheotherhand,participantsfromtheindividualcontextfeltthatitwassomethingthey
shouldusenow,andcontinueaddingto.
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“Oh,Ithinkwe'llcarryonusingityeahbecausewe'llbewritingaboutthenewholiday
andtheneveryholidaywegoonandthingsthatcropup"(Mrs.M,individualcontext).
"There'ssomuchyoucanaddintoit.Ourlivesarecontinuing,MrK'slifeiscontinuing,
soyouknowyou'vegottowritealltheseextrathingsin"(MsK,individualcontext).
Interventioncontext.
Groupcontext.WhenaskedaboutthebenefitsoftheLSWserviceanddigitallife
storybook,caregiversfromthegroupcontextspokeprimarilyaboutthesocialbenefitsof
attendingtheworkshops,bothforthemselvesandthepersonwithdementia.
"Ithinkit'sveryhelpfulit'snicetomeetotherpeople"(MsE,groupcontext).
“There’snorealimpactbeyondmeetingotherpeopleandgettinghimoutofhischair
whichisquiteimportantbecauseotherwisehewouldsitandwatchwarfilmsonTV
[laughter]...it’ssocialising”(Mrs.J,groupcontext).
Individualcontext.Conversely,caregiversfromtheindividualcontextfeltthatthe
interventionwouldbebetterinaone-to-onesettingthaninagroupsetting.MsKalso
emphasisedhowthefacilitatorhasmadeitanenjoyableexperienceforherandMrK.
"It'stheonetooneIthink;it'sbetterfromMrK'spointofviewbecauseyoutendtobe
overwhelmedbyeverybodyelseandtherewillalwaysbesomebodythat'spipingup
andsayingthings,andyoudon'tgetasay"(MsK,individualcontext).
“IthinkwehadtheoptiontogointoagrouponeorindividualandIthoughtit’s
bettertotalkonetoonebecauseinagroupyoucangetside-trackedoritwasnice
[thefacilitator]washereconcentratingonusandwhatwewantedtoputinit”(Mrs.
M,individualcontext).
"He'senjoyedit,andshe's(thefacilitator)madeitnice.It'snotbeenheavydoyou
knowwhatImean?It'sbeenlight,andit'sbeennice"(MsK,individualcontext).
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Technology.
Multimediaaccessandcapacity.Allfamilycaregiversvaluedtheabilitytouseand
combinemultimediastimuliinthedigitallifestorybook.
“Idon'tknowhowpeoplemanagedbefore.Theywouldlookthroughheaps/sheetsof
photographsandsomebody,oneortwopeople,wouldhavetobetheresayingthisis
whathappenedyouknowwhatyoudid,andallthatsortofthingormaybetheywrote
everythingdowninlonghandorinanotepadorsomethinglikethatsothisissortof
everythingallrolledintooneisemBookofYou.It’sthereforeverybodytocontribute
alittlebit”(Mrs.J,groupcontext).
“Andwhenshe[thefacilitator]firstcameshesaid‘andwheredidyougotoschooland
shesaidandwhowasyourteacherandshejustbringsthispictureupandshowedus
andtoseehisface!Justlightup!Becauseyoucan’talwaysrememberpeople’snames
canyou?Butifyousaw…thatfootballerlastweekwhenshebroughtthepictureup
thelookonyourfacewasfab!Thatwasworththewholeofthesixweeksthatwas.
Andthat’ssosocleverthatyoucandothatisn’tit?”(Ms.K,individualcontext).
Limitationsorlearning?Althoughfamilycaregiversvaluedthedigitalnatureof
thelifestorybook,itwasasignificantbarrierforthoseinthegroupcontext.
"IsayI'mnotatechnologicalpersonsoifitdoesn'tcomeupquickly,thenItendtogo
awayfromit"(Mrs.J,groupcontext).
Familycaregiversfromtheindividualcontextfeltthatthedigitalaspectoftheintervention
wasalearningexperienceandbecamemoreconfidentasthesessionscontinued.
Although,thenatureandlongersessionlengthoftheindividualcontextmeantthatthey
receivedmoreone-to-oneattentionfromthefacilitatortolearnhowtousethedigitallife
storybook.Allthreementionedusinga‘howto'guidetheyreceivedfromthefacilitator.
“OnSaturday,IstarteditandwentthroughitandthoughtohIhaven’tputatitleinwhatdoI
dohelp.AndtheBookOfYouhadsentmealotofnotes,soIwenttothebit,foundwhattodo,
managedtogetbackinanddidandfeltsoproudofmyself.Imadeamistake,butImanaged
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tocorrectit.ItgavemetheconfidenceyouknowifIdomakeamistakeagainIcanjustnot
worryaboutitandjustgobackinanddoitnow"(Mrs.M,individualcontext).
CareStaffFindings
ThemesandsubthemesfromthecarestaffdataareoutlinedinTable3.4.
Table3.4.Findingsfromtheperspectiveofcarestaff
Theme Subtheme
Connectingandsharing
Collaborationandcommunication
Meaningfulinteraction&conversation
“it'stoopersonal”
ICT:creatingopportunitiesAccessingrelevantmaterials
Anewskill
TheInfluenceofthe
WorkEnvironment
Timeandpriorities
Convenience
Theimpactofmanagement
Connectingandsharing
Collaborationandcommunication.Thedigitallifestorybookspresentedan
opportunityforstaff,residents,andrelativestohaveasharedgoal.Carestaffspokeabout
workingwithfamilies,witheachother,andwithresidentstocreatethelifestorybooks.
"Ithelpsthefamily,theclient,andourselvesIthinktobecomeoneeffortforthatone
personIfeel"(MsV,CH2).
"Welearnsomuchjusttalkingtosomebody,communicatingwiththefamiliesand
eventalkingtosomeoftheresidentswhostilltalktous"(MrM,CH1).
Staffinbothcarehomesalsousedthedigitallifestorybookasatooltocommunicatewith
residents’familymembers.Inthesecondcarehome,thiswasit’sprimaryuse.Thedigital
lifestorybookwasusedtosharemomentsthatoccurredinthecarehomethatfamily
membersmighthavenototherwiseseen.Photosandvideosofrecentactivitiesandevents
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inthecarehomewerealsorecordedandaddedtoresidents'digitallifestorybookssothat
familymemberscouldviewthemthroughasharedpassword.Thistakesthedigitallife
storybookbeyonditsoriginalLSWuseandtowardsavehicleforcommunicationwith
relatives.
"…wehaveonegentlemanwhoseeating'sverypoor,andwe'vehadhimeatingatthe
table,andit'samoment,isn'tit?Youknow,andwetookthatpictureandshowedthe
familyandshe's[intakeofbreath]youknow,andit'sathankyou.Andit'snicetohave
athankyouattheendoftheday"(MsV,CH2).
“I’veactuallytookonethismorning,avideoofoneofthemdryingupthedishesand
puttingthedishesaway.Em…drawing,havingwalksoutside,tookphotosofpeople
satinthecar.Whateveractivitythey’redoing,wewilltrytotakeacoupleofpictures
we’vetakensomeofsomeofthemsinginganddancingso…”(Ms.P,CH2).
Meaningfulinteractionandconversation.Carestafffeltthatthedigitallife
storybookhelpedthemtohavemeaningfulinteractionswiththeresidentstheycaredfor.
Theyvieweditasatooltolearnmoreaboutresidentsandtostimulateconversation.
"Ithinkit'sjustsettingtheresidentwithus,andjust…littlesparkscomeback,and
somethingsthatwerepartoftheirlifecancomebackandyeah…it’shardtoexplain
reallybutthewholethingtogetherwhentheyseealltheselittlepicturesandemthe
littlememoriescosthememoriesarestillthere,it'sjustshort-termthingsthat'snot
there"(MrM,CH1).
"We'vegotonegentlemanwholovesrugbysowewentbacktorugbyyearsagowhere
he'dremembersoIcouldcommunicatewithhimwithit,andhecouldfeedbacktome
aswell,soitwaslikecommunicatingaboutsomethingthatheliked…IfoundthatI
couldactuallyhaveaconversationwithhimwithwhichsurprisedmereallybecause
heactuallyansweredsomeofthequestions,soitwasanicecommunicationthatwe
had"(MsV,CH2).
Somealsofeltthatthedigitallifestorybookwasausefultooltohelpcalmresidentsifthey
feltdistressed.
80
"ItdoesworkIthinkit'sagoodthing.LikeIsaidwehadagentlemanwhowasclearly
agitatedandthegirlsputitonandstraightawaytherewasamoodchangeandhe
startedsinging…SoitdoesIthinkitreflectsonthemsomethingthattheyrecognise
becausethey'relonelyaren'tthey...intheirownminds…ithelpsustocommunicate
withthembetterandtosortofjustsettlethemalittlebit"(MsP,CH2).
‘It’stoopersonal’.Staffmembersinbothcarehomesendeavouredtosetupa
digitallifestorybookforeveryresident.However,inthefirstcarehome(CH1),some
familymembersdidnotwantonesetupfortheirrelativeastheywereconcernedabout
privacy.Inthefirstcarehome,theinterventionwasintroducedasanewscheme,whilein
thesecond(CH2)itwasimplementedfromwhenitfirstopened.
“Some[relatives]areverygoodtheywantto…they'reallforit,andothersare
just…they'renotkeenatall….There'ssomethatdon'twanttodoittheyfeelasthough
it’sjust,it'stoopersonaldoyouknowwhatImean?Andtheythinktheirlovedone
wouldnotwantthemto…Idunno…exposethatmuch"(MrM,CH1).
ICT:creatingopportunities.
Accessingrelevantmaterials.Carestaffvaluedtheabilitytofindandadd
multimediamaterialsthatarepersonalandmeaningfultoresidents.Onechosetomake
digitallifestorybooksforresidentsthatwerefromareasthatwerefamiliartohersoshe
couldhavein-depthconversationsaboutthem.
“Ithinkit’sgettingtheresidentsandfamiliesinvolvedandemputtingthelifestories
andwhatthingsaremeaningfultothemontoabook…ontoavideo,downloada
pieceofmusicthatyouknowtheylove…It'samazingjustgoonYouTube,andthings
comeupwhichisrelatedtotheresidents"(MrM,CH1).
Anewskill.Althoughsomestaffmembersexperiencedalittledifficultyusingthe
digitallifestorybook,theywereabletonavigateitwithrelativeeaseforthemostpart.
Theyfeltthatusingthedigitallifestorybookandattendingtheworkshopshadbeena
learningexperience.
81
"I'mgettingbetter…ImeanI'minmy50sIwasn'tbroughtupwithcomputers,tobe
honestwithyou.Ithinkit'smoreofastrugglefortheoldercarersbutwe'regetting
intoit.Theyoungercarerstheyjustknoweverythingyouknowtheyknowwhereitis
it'sfantasticforthem.It'salearningprocessforusaswell"(MrM,CH1).
“Nil[computerskillstostartwith]reallybutI'vegotthehangofdoingthem.Butit's
helpedmewithcomputersathomeaswell"(MsV,CH2).
Theinfluenceoftheworkenvironment.
Timeandpriorities.Asexpected,timewasacrucialfactorincarestaffusingthe
digitallifestorybook.Reportedtimeconstraintswereconsistentwithreportedusage(i.e.
lesstimewasassociatedwithlessuseandviceversa).Despitethis,carestaffhadapositive
attitudetowardsthedigitallifestorybookandwantedtouseitmore.
"It'sjust…gettingthetime.Ifwedohaveabitoftime,wecansitdown,butitjust
dependswhatkindofdaywe'rehavinghere.Ifwe'rehavingagooddayyeswe'dhave
time,butitdoesn'thappenquiteoften(laughter)..."(MsG,CH1).
"Whenwe'rebusyyouknowwecan'tuseitasmuchaswe'dliketo"(MsV,CH2).
Convenience.BothcarehomeshadWi-Fi,andstaffmemberscarriedatablet
computerwiththemontheirshifttorecordcarenotes.Thedigitallifestorybookwas
accessibleonthesetabletswhichprovidedconvenientandinstantaccesstoanyresident’s
digitallifestorybook.
"Well,Ithinkit'squitehandybecausewe'vegotitonusandwecango…whenwe're
sittingdownwiththeresidentswecangostraightonitwedon'thavetogoandlook
forsomething…tolookforphotosorgetsomethingfromtheirroomwe'vegotthem
withus….Andyouknowbythetimewe'vegonetogetaphotofromtheroomthey
wouldn'tbeinterestedthencosyou'vegottodoitwhenthey'resitting,andtheperson
isinterested.Becausedoyouknowanotherminuteandthey'vechangedagainhaven't
they?That'sdementiayeah"(MsG,CH1).
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Theimpactofmanagement.Managementinbothcarehomesweresupportiveof
theinterventionandkeentohavethedigitallifestorybooksintegratedintothedailycare
routine.TheyappointedLSW‘champions’toencourageintegration,andheldoccasional
meetingswithstaffwhohadattendedthetrainingworkshops.Staffmemberswhohad
goodICTskillswereassignedtobe‘tutors’andassistotherstaffifneeded.
“[Themanager]isverykeentogetthisgoingandemlikeIsaidwewanttogetit
goingaswell"(MrM,CH1).
“Yeahandwe’vegotgoodtutorsifweneedtoknowsomethingormaybenotsureof
somethingwecanjustgotocertainpeoplewhoareinvolvedincomputers…”(MrM,
CH1)
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Discussion
Thisstudyaimedtoexploreuserexperiencesofadigitallifestorybookfromthe
perspectivesofpeoplewithdementia,familycaregivers,andcarestaffacrossthree
differentimplementationsofLSW.Itprovidesinsightintotheseexperiencesandaddsto
evidencesupportingthefeasibilityofdigitalLSWforpeoplelivingwithdementiaandtheir
caregivers.Thisresearchalsohighlightsexamplesofdigitallifestorybooksbeingusedfor
additional,butvalid,purposes.
Makingconnectionsisacommonthemethatwasidentifiedinthedatafromall
threeparticipantgroups.Forparticipantswithdementia,theinterventionhelpedthemto
reconnectwiththeirpastbyevokingdistantandforgottenmemories.Thissupports
findingsfrompreviousstudiesusingICTbasedapproachestoreminiscencework
(Damianakisetal.,2010;Lynchetal.,2016;Massimietal.,2008;Sarne-Fleischmann&
Tractinsky,2008;Subramaniam&Woods,2016).Forfamilycaregivers,making
connectionsreferredtoLSWevokingmemoriesforthepersonwithdementia(individual
andgroupcontexts),andthesocialaspectofattendingworkshops(groupcontext).
AccordingtotheformulationproposedbyKindellandcolleagues(2014,p.159),the
connectionsmadebycarestaffthroughtheinterventionwereexamplesof‘interactional
connections'and‘buildingnewconnections',inwhichtheprimaryoutcomesare
enjoymentandpromotingperson-centredcare.Carestafffeltthatthedigitallife
storybooksimprovedthequalityofcommunicationbetweenthemselvesandresidents.
Thisreflectspreviousfindingsofbothconventional(Clarkeetal.,2003;Gudexetal.,2010;
Kellett,Moyle,McAllister,King,&Gallagher,2010;Subramaniametal.,2013)anddigital
(Lynchetal.,2016;Sarne-Fleischmann&Tractinsky,2008,Subramaniam&Woods,2016)
LSWinterventions.Inadditiontoimprovedcommunicationwithresidents,carestaffalso
discussedhowtheycommunicatedmorewithrelatives.Thisreinforcespreviousfindings
thatbothtraditionalanddigitalLSWcanbuildandstrengthenrelationshipsbetweencare
homestaff,thepersonwithdementiaandtheirrelatives(Clarkeetal.,2003;Kellettetal.,
2010;Sarne-Fleischmann&Tractinsky,2008;Subramaniam&Woods,2016).
Thedigitalnatureoftheinterventionpresentedbothopportunitiesandchallenges
forparticipants.Inadditiontotheirownpicturesanditems,participantshadaccessto
powerfulmultimediastimulithatwerepersonaltothemthroughtheuseoftheinternet,
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whichtheyenjoyedandappreciated.Forexample,MrKhadnophotographsfromhispast
andreliedonresourcesfromtheinternetformaterialsforhisdigitallifestorybook.Music
seemedtobeparticularlymeaningful,whichhasalsobeenidentifiedinpreviouswork
(Mulvennaetal.,2017;Subramaniam&Woods,2016).Ontheotherhand,ICTwasa
significantbarrierforallparticipantswithdementiaandsomecaregivers.Participants
withdementiadidnotinteractwiththereminiscencedeviceanddependedontheir
caregiverstodoso.Conversely,althoughMulvennaandcolleagues(2017)identifieda
significantcorrelationbetweenthepersonwithdementia’sandcaregiver’suseofa
reminiscenceapp,theyalsoobservedthatpeoplewithdementiasometimesusedtheapp
withouttheircaregiver,andwereabletointeractwithitindependently.Inthatstudy,
participantsalsohadmildtomoderatedementiabutreceivedtrainingattheonsetofthe
12-weektrial.
Conflictingaimshaslongbeenanissueinreminiscencework(Kindelletal.2014;
McKeownetal.,2006;Subramaniam&Woods,2010;Woods&Subramaniam,2017).
AccordingtoKindellandcolleagues(2014),LSW‘hasthepotentialtobeadiverseactivity,
carriedoutinavarietyofsettings,indifferentways,usingdifferentmaterials,byavariety
ofpeople,withpotentiallydifferentobjectives’(p.153).Inthepresentstudy,different
participantgroupsprioritiseddifferentgoals,andthesegoalsvariedacrosscontexts.
‘Missioncreep'waspresentinthewaysthatcarestaffusedthedigitallifestorybooks,i.e.
theywereusedinadditional(butpositive)waysthatwentbeyondtheinitialaimsofthe
developers.Carestaffinthesecondcarehomeprimarilyviewedthedigitallifestorybooks
asameansofsharingmomentsandactivitiesfromthecarehomewithrelativesof
residents.Theyfeltthisimprovedtheirrelationshipswithrelativesandmadetheirwork
moreappreciated.Thiswasausefuladdedfunction,thoughover-focusingonthisuseof
thedigitallifestorybookmayriskexcludingtheresident.Meanwhile,familycaregivers
fromthegroupcontextfeltthatLSWwassomethingtodointhefuturewhentheir
relatives'conditionworsened.Thisdiffersfromcaregiversfromtheindividualcontext,
whowerekeentocontinueusingandaddingtotheirrelative'slifestorybook.
Allthreeparticipantgroupshadafavourableviewoftheinterventionandthe
digitallifestorybook.Theyenjoyeditandfeltthatitwasagoodthingtodowhich
resemblespreviousfindings(Damianakisetal.,2010;Massimietal.,2008;Sarne-
Fleischmann&Tractinsky,2008;Subramaniam&Woods,2016).However,wealsosaw
howreminiscenceevokednegativeemotionsforsomeparticipantswithdementiaaswell
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aspositiveones.MrKandMrDfromtheindividualcontexthadtearfulmoments,andMrK
oftenfeltfrustratedwhenhecouldnotrememberpeopleorplaces.Despitethesesador
frustratingmoments,theyfelttheiroverallexperiencewaspositivewhichisreflectedin
previouswork(Damianakisetal.,2010;Sarne-Fleischmann&Tractinsky,2008).For
example,Damianakisandcolleagues(2010)observed291positivereactionsto
reminiscencestimuliamongparticipantswithdementiaandMCI,comparedtojust6
negative,and16mixedreactions.Inotherresearch,negativeresponseswereconsidered
naturalexpressionsoflossandinonecase,viewedinapositivelight(Sarne-Fleischmann
&Tractinsky,2008;Subramaniametal.,2013).However,itiscrucialtoequipfacilitators
andcarestafftomanagenaturalexpressionsoflosscarefullyandsensitively(McKeownet
al.,2017).AnadvantageofdigitalLSWisthattheusercaneasilyremovematerialsthat
evokenegativereactionsifneeded.Subramaniamandcolleagues(2013)foundthatall
participantsintheirstudyoptedtoexcludetraumaticanddistressingmemoriesfromtheir
lifestorybooks.
Resultsofthisresearchsuggestthatdifferentinterventioncontextshavedifferent
implicationsforimplementation.Usageofthedigitallifestorybookwashigheramong
participantsintheindividualcontextthenthegroupcontext.Familycaregiversfromthe
individualcontextalsoreportedthattheybecamecomfortableusingthedigitallife
storybook(likelyduetomoreone-on-onetimewithafacilitator)andhadplansto
continueaddingtoit,whichwasnotsalientinthegroupcontextdata.TheBookofYou
servicedoesnothavecurrentorplannedsystemstocheckandencourageimplementation
withprevioususers.Six-monthlymaintenancesessionscouldbeapotentialwaytoachieve
this.
Forcarestaffparticipants,implementationissomewhatdifferentbecausecarrying
outdigitalLSWwasviewedaspartofdailycare,bothbystaffandmanagement.Following
adigitalLSWintervention,Lynchandcolleagues(2016)highlightedtheimportanceof
organisationalsupportforsuccessandsustainability.Gudexandcolleagues(2010)
speculatethattheirhospital-basedLSWinterventionwasnotfullyimplementeddespite
enthusiasmfromstaffmembers,duetoalackofinterest,timeandsupportfrom
management.Inthepresentstudy,carestaffwerepositiveabouttheinterventionand
receivedagooddealofsupportfrommanagement,thoughtimeremainedanissue.
Managementheldmeetingsandappointedstafftutorstoencouragetheuseofthedigital
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lifestorybooks.ThisissomethingthatparticipantsfromtheGudexstudyreportedthat
theywouldhavewanted.Carestaffinthepresentstudyviewedthedigitallifestorybook
trainingaslearninganewskill.Similarly,Gudexandcolleagues(2010)foundthatstaff
memberswhoreceivedreminiscencetrainingscoredsignificantlybetteronmeasuresof
personalaccomplishmentthanstaffwhoreceivednotraining.
Strengthsandlimitations
Asmallconveniencesamplewasusedmeaningthatitislikelynotrepresentativeofpeople
withmildtomoderatedementia,theircaregivers,orcarestaff.Thefacilitatorwasinvolved
ininitiallydistributinginformationsheetstopotentialparticipantsintheindividual
context.Eventhoughitwasstressedthatthiswasoptional,itmayhavecreatedbias.Time
constraintswithparticipantsinthegroupcontextreducedthedepthoftheinterviews
conducted,whilethecaregiver’spresenceintheindividualcontextmayhaveledtoless
inputfromthepersonwithdementia,asthecaregivermostlyspoke.Ontheotherhand,
thesemi-structuredtopicguidefacilitatedtheemergenceofindividualexperiences,and
theseexperienceswereconsideredandanalysedseparately,meaningthatdistinct
perspectivescouldemerge.
Rigour/Credibilityoffindings
LongandJohnson(2000)suggestthatthecredibilityofqualitativestudiesisenhanced
greatlybyseekingtherespondents’viewsontheemergingthemesandcheckingthatthey
doindeedresonatewiththeirexperiences.Inthisstudyitwasnotpossibletoattain
respondentvalidation,largelyduetoseveralmonthspassingbetweendatacollection
interviewsanddataanalysis(asrecruitmentwasconstrainedtothoseinteractingwith
LSWservice).However,otherstepsweretakeninanefforttoaddresstherigourand
credibilityoffindings.Duringtheinterviews,clarificationwassoughtonwhatparticipants
weresayingthroughouttheinterviews,bysummingupwhattheyhadsaidandaskingif
thiswascorrect.Iwasveryawareofmypositionasaresearcherbothpersonallyandin
relationtothelifestoryworkserviceandtookthetimetoexplainthistoallparticipants.I
keptfieldnoteswhichIreferredbacktothroughoutthedatacollectionandanalysis
process.Thetranscriptsandpotentialthemesarisingfromthesewerediscussedwithmy
supervisor(whohadnotbeeninvolvedwithinterviewing).Later,whenalistofthemes
andsubthemeswasestablished,thesewereagaindiscussedwithmysupervisor.The
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resultsofthischapterprovideseveralextractsofparticipantinterviewstosupportthe
findings.
Implicationsforpracticeandresearch
Thismultipleperspectivestudyshowsthatadigitallifestorybookisfeasibleincare
homes,andinindividualandgroupcontextsforpeoplewithdementiaandtheircaregivers
ifupsettingmemoriescanbemanagedsensitively.Thedatahighlightssomestrengthsof
theservicebutalsosomeissuesinclarifyingtheobjectivesofitsuse.
Amongpeoplewithdementiaandfamilycaregivers,enjoymentoftheintervention
appearedtobesimilar,thoughparticipantsfromtheindividualcontextputmoreweight
onreminiscence,whilethosefromthegroupcontextfeltstronglyaboutthesocialisation
aspect.Conductingtheinterventioninaprivateindividualcontextwasmoreconduciveto
learninghowtouseandcreateadigitallifestorybook.However,itiscruciallyimportantto
havefacilitatorswhowilldelivertheinterventioninapositive,enjoyablewayandensure
theyarepreparedtodealwithpotentialnegativeemotionsthatmayresultfrom
reminiscing.Incarehomes,theinterventionwasrelativelysuccessful,withbenefits
reportedlyreachingtheresidentsandtheirrelatives,inadditiontothecarestaff.Future
researchshouldaddressthelimitationsofthecurrentstudy,andexploretheviewsofcare
homeresidentsandtheirrelatives.
Conclusion
ThisstudyprovidesevidenceforthefeasibilityandpositiveimpactofdigitalLSW
deliveredthroughaservice.Theinterventionappearstobefeasibleandvaluableinall
threecontexts,thoughdifferentcontextsareassociatedwithslightlydifferentoutcomes.
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Chapter4.Exploringthefeasibilityofaself-guided,digitallifestoryworkappfor
peoplelivingwithdementiaandtheircaregivers:ACitizenScienceapproach
89
Summary
DigitalLifeStoryWork(LSW)hasbecomeapopularapproachtoreminiscenceworkfor
peoplewithdementia.Theaimofthisstudywastoinvestigatethefeasibilityofaself-
guideddigitalLSWresearchappforpeoplelivingwithdementiaandtheircaregivers,and
toexploreuserexperiencesofit.ACitizenScienceapproachwasused,and101
participantsconsentedtoparticipateinthisthree-monthintervention.Participantswere
givenaccesstoadigitallifestorybookapp,thatalsoincludedresearchelements(e.g.
informationsheet,consentforms,quantitativemeasures).Participantexperienceswere
exploredusingmomentarysessionfeedback,usagedatainsights,quantitativemeasuresof
well-being,andfollow-upqualitativephoneinterviews.Engagementwiththeappwaslow,
thoughmomentaryassessmentdataindicatedthatitappearedtoprovidesomeenjoyment
tothosewhousedit.Noeffectswereidentifiedonmeasuresofqualityoflife.Thisisthe
firststudyintoaself-guideddigitalLSWappforpeoplewithdementiaandtheir
caregivers.Thischapterwilldrawonuserexperiencesandusageinsightdata,tomake
recommendationsregardingthedevelopmentofdigitalLSWandCitizenScience
approachesforpeoplewithdementiaandtheircaregivers.
TheresearchpresentedinthischapterhasbeensubmittedtoTheInternationalJournalof
ComputersinHealthcareforconsiderationforpublication.
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Introduction
Dementiaisnowseenasoneofthebiggesthealthandsocialcarechallengesglobally,
surpassingcancer,heartdisease,HIV,andAIDS.IntheUKalone,dementiacostsan
estimated26billionpoundsperyear,andthiscostissettoriserapidly(Lewisetal.,2014).
In2012,theBritishPrimeMinisterlaunchedanationalchallengetofightdementia,with
increasedandimprovedresearchattheforefront(DepartmentofHealth,2015).This
initiativeledtotheestablishmentoftheWorldDementiaCouncil(WDC),inwhich
‘fosteringacultureofopenscienceandcollaborativeglobalresearch,includingtheuseof
globalbigdataapproaches’wasoneoffivekeyglobalpriorities(WDC,2017).Toaddress
thePrimeMinister’schallenge,theUKgovernmenthascommittedtoinvestingover60
millionpoundstosupportbothconventionaldementiaresearch(tofindacureby2025)
andotherstreamsofresearch,includingthepotentialfora‘CitizenScience’approach
(WHO,2017).
Overthelastdecade,CitizenSciencehasbecomeanincreasinglypopularresearch
approach,assistedbyinnovationsintechnology(Rothstein,Wilbanks,&Brothers,2015;
SocientizeConsortium,2013).Thereareseveraldefinitionsandconceptualisationsof
CitizenScience,butsimplyput,itis‘aseriesofactivitiesthatlinkthegeneralpublicwith
scientificresearch’(SocientizeConsortium,2013,p21).Itencompassesawiderangeof
activitiesthattakeplaceatvariouslevelsandintensities.Haklay(2012)proposedthat
therearefourmainlevelsofCitizenSciencewhichareassigneddependingupontheextent
ofvolunteerengagement.Theserangefrom‘ExtremeCitizenScience’(Level4)to
‘Crowdsourcing’(Level1).In‘ExtremeCitizenScience’(Level4),theresearchis
collaborative,andmembersofthepublicareinvolvedinallaspectsincludingproblem
definition,datacollection,andanalysis.Forexample,theArcticHuntersProjectaimsto
developmobiletechnologythatcanassistindigenoussubsistencehunterswithforecasting
theweatherinthefaceofclimatechange.Participantsrecordtheirexperiencesand
contributetheirknowledgewhichisthencombinedwithscientificknowledgeto
collectivelyaddresstheseissues(Jennett,Cox,Mastracci&Regalado,2014).In
‘crowdsourcing’(level1)ontheotherhand,participantsonlycontributetodatacollection
orprovidecomputingpower.Forexample,intheNorthCarolinaKingTidesproject,the
publicisaskedtosubmitphotosoffloodingintheirareasothatscientistscanlearnmore
aboutthecausesandimpactofhighcoastalwaterlevels(NorthCarolinaKingTides
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Project,2017).OthertaxonomiesclassifyCitizenSciencebythenumberandspreadof
participants,andthetimeorresourceinvestmentrequired(Royetal.,2012),orbythe
generalaimsoftheproject(Wiggins&Crownston,2011).Recently,DenBroeder,Devilee,
VanOers,Schuit,andWagemakers(2016)proposedasingleframeworktoclassifyCitizen
Scienceprojectscombiningthethreeabovetaxonomies.Thisframeworkismadeupof
threecharacteristics:theaimofcitizenengagement,thelevelofparticipation,and
geographicalsize(Table4.1).
TheadvantagesofCitizenSciencecanbegroupedintothreemaincategories:
increasedresearchcapacity,betterknowledge,andbenefitsforcitizens(DenBroederet
al.,2016;SocientizeConsortium,2013).Oneofthemaindriversbehindthedevelopment
ofCitizenScienceisthatitenablesresearcherstocollectandanalysedatathatmightnot
havebeenmanageableanyotherway.Italsofacilitatescollectingdataacrosslargeareas
orlengthytimescales.TheideabehindCitizenScienceisthatcombiningpublicand
scientificknowledgemayproduceimprovedknowledgeandthedevelopmentofnew
researchmethods.Benefitsforcitizensmainlyrevolvearoundgainingmoreknowledge
andunderstandingaboutthesubjectandresearchmethods,inadditiontonewskillsand
abilities(DenBroederetal.,2016).Additionalpotentialbenefitsincludeempowerment,
attitudechanges,andcommunitydevelopment(DenBroederetal.,2016;Haywood,2013;
Kingetal.,2016;SocientizeConsortium,2013).Itisalsoimportanttoconsiderwhat
attracts,motivates,andretainsparticipantsinCitizenScienceresearch.Although
motivationdependsupontheprojecttypeandlevelofinvolvement,commonmotivators
includeinterestintheresearchtopic,enjoyingtheresearchtask,helpingothers,feeling
partofateam,financialincentives,andreceivingrecognitionandfeedback(Jennet,
Furnissetal.,2014).
Initially,theCitizenScienceapproachwasusedalmostexclusivelyinthebiologicaland
physicalscienceswhichhasconstrainedresearchintotheapproachitself(Follett&
Strezov,2015).However,itisnowgainingtractioninotherfieldsincludinghealthand
socialsciences.Jennet,Furniss,andcolleagues(2014)suggestthatusingCitizenSciencein
healthorsocialsciencesbringsaboutashiftfromparticipantsreportinginthethird
person(observationsabouttheirenvironment)tothefirst-person(informationabout
themselves)whichmayaffectparticipationandmotivation.Inrecentyears,information
andcommunicationtechnology(ICT)hasbroughtaboutanewwaveofCitizenScience
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Table4.1.CitizenSciencedescriptivecharacteristics
Aims 1. Investigation:aimedatansweringscientificquestions
2. Education:aimedateducationalgoals
3. Collectivegoods:publichealth,managementofinfectious
diseases,protectandmanagenaturalresources
4. Action:citizensandscientistscollaboratetoaddresslocal
concerns
Approaches A. Extremecitizenscience:Citizensinchargefromproblem
definition,datacollectionandanalysis,tointerpretationand
knowledgedevelopment
B. Participatoryscience:Participationofcitizensinproblem
definitionanddatacollection
C. Distributedintelligence
a. Citizensasbasicinterpreters
b. Volunteeredthinking
D. Crowdsourcing
a. Citizensassensors
b. Volunteeredcomputing
Size i. Local
ii. Mass
From“CitizenScienceforpublichealth”byL.DenBroeder,J.Devilee,HVanOers,A.J.
Schuit,&A.Wagemakers,2016,HealthPromotion,1,1-10.
approacheswherebythepublicandresearchscientistscollaborateonlinethroughapps,
wearabletechnology,sensors,games,etc.(Jennet,Furniss,etal.,2014;Rothsteinetal.,
2015).InMarch2015,thefirstmajorsmartphone-basedhealthresearchstudy,‘mPower'
waslaunched(SageBionetworks,2015).‘mPower’isaclinicalobservationalstudy
conductedexclusivelythroughaniPhoneapptomonitorkeyindicatorsofParkinson’s
Diseaseprogressionanddiagnoses.Thestudyusedaremoteapproachwhereby
participantsdownloadedtheappandself-guidedthroughthesign-upandconsentprocess.
Withintheapp,participantsareaskedtoinputdemographicinformation,completetwo
questionnaires(repeated),andcarryoutfour‘tasks’tomeasurevoice,posture,stability
reactiontimeetc.Atotalof9,520participantsconsentedtoparticipate(though86%were
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healthycontrols),with8,320completingatleastonesurveyortask(Botetal.,2016).Soon
afterthelaunchof‘mPower’,asimilarapp,‘SharetheJourney:Mind,Body&Wellness’was
released,thistimeaimedatbreastcancersurvivors(SageBionetworks,2015).Again,
participantsusedtheapptofilloutsurveysandsharenovelsensordata.Datafromthese
studiesarebeingusedinongoingresearchwhichhasnotyetbeenpublished,meaning
thereiscurrentlylittleinformationavailableaboutparticipants’experienceswiththese
researchapps.
Inlinewiththe2013G8DementiaDeclarationOpenScienceandData
Commitments(DepartmentofHealth,2013),theUKGovernmentprocuredanonline
dementiaCitizenScienceplatform2involvingtwoapp-basedpsychosocialinterventions.
Digitallifestorywork(LSW)wasselectedasoneoftheseinterventions,duetoits
popularityandearlypromisingresearchfindings.LSWisabiographicalapproachthat
givespeopletheopportunitytotalkaboutpasteventsandexperienceswithanother
personorgroupofpeople,andhavetheserecordedinsomeway,typicallyinalife
storybook.Thisisthenusedtobenefitthepersoninthepresent(McKeownetal.2006,
Murphy,2000).LSWcanhelpthepersontomakesenseoftheiridentityandconnectthe
pasttothepresent.Itcanbeimportantforothers,asitfacilitatescommunicationand
understandingofthepersonwithdementia(Coleman,Ivani-Chalian&Robinson,1998;
Kelletetal.,2010;Russell&Timmons,2009;Woods&Subramaniam,2017).Inrecent
years,innovationsinICThavepromptedashiftfromconventionalLSWusingscrapbooks
andphotoalbums,todigitalLSWusingapps,digitalpresentations,anddigitalarchives
(Subramaniam&Woods,2016).DigitalLSWintroducesarangeofrelevantand
stimulatingmultimediacontentthatuserscancompiletocreateadigitaltypeof‘book’
(Subramaniam&Woods,2010).
Despitelimitedresearch,thereispromisingevidencethatdigitalLSWisfeasible
andbeneficialforpeoplewithdementia(Damianakisetal.,2009;Lynch&colleagues,
2016;Subramaniam&Woods,2010;Subramaniam&Woods,2016).Forexample,
SubramaniamandWoods(2016)foundthatadigitallifestorybookthatplayedasamovie
wasassociatedwithimprovedqualityoflifeandaspectsofautobiographicalmemoryfor
fiveoutofsixpeoplewithdementialivingincarehomes.Athematicanalysisalsorevealed
2www.dementiacitizens.org
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thatparticipants,relativesandcarestaffconsideredthedigitallifestoriesausefultoolto
helptriggermemories,whileparticipantselicited(mostly)positivereactionsinresponse
toviewingthem.Similarly,usingobservationalmethodsandinterviews,Damianakisand
colleagues(2010)foundthatsixpeoplewithdementiaenjoyedhavingtheirlifestoriesina
digitalDVDformatandthatmostmemoriestriggeredwerepositive.Lynchandcolleagues
(2016)usedatouchscreenapptocreateadigitallifestorybook(LSB)forpeoplewith
intellectualdisabilitieswhohaddementiaorwereatriskofdevelopingit.Theyfoundthat
theLSBwasapowerfultooltofacilitatemeaningfulconversationandthatitsupported
person-centredcare.Theparticipants,theirfamilies,andcaregiversapprovedofthe
intervention.
However,personalisedpsychosocialapproaches,suchasLSW,canbechallengingto
implementastheymaybedemandingontimeandoftenrequireadditionalresources
(Lawrenceetal.,2012;Subramaniam&Woods2012).Thesechallengescanalsobe
paralleledinresearch.Forexample,inoneoftheabovestudies,themeanresearcher
productiontimeforonedigitallifestorybookDVDwas135hours(Damianakisetal.,2010;
Smith,Crete-Nishihata,Damianakis,Baecker&Marziali,2009).Similarly,intheworkby
SubramaniamandWoods(2016)describedabove,convertingaconventionallife
storybooktoavideoonDVDwasalengthyprocess,thatcouldstretchover7to10weeks
intotal.IncorporatingdigitalLSWintoaCitizenScienceplatformmayhavethepotentialto
reducethetimeandresourceburdenofthisintervention,asparticipantscreatetheirown
lifestorybookandrespondtoresearchquestionnaireselectronically.However,Gibsonand
colleagues(2016)foundthatimplementingstandardprotocolstotesttheusabilityofICT
systems(e.g.audioandvideorecording,voicingthoughtsduringuse)maynotbe
appropriateforusewithpeoplewithdementia,andthereisneedtoexplorenewwaysto
collectthiskindofdata.
Aims
Theaimsofthisstudyaretwofold.Thefirstistodeliverandinvestigatetheeffectsof,a
LSWinterventionforpeoplewithdementiaconductedpurelythroughaniOSapp
interface,usingaCitizenScienceapproach.ThesecondistoexplorehowCitizenScience
maybestbeappliedinthecontextofdementia.Thefollowingresearchquestionswillbe
addressed:
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1. Whatareparticipants’generalexperienceswiththeapp?
2. Whatareparticipants’dailyexperiencesofLSW‘sessions’usingtheapp?
3. Isaremoteapp-basedLSWinterventionfeasibleforpeoplelivingwithdementia
andtheircaregivers/supporters?
4. DoestheuseofaLSWappaffectthequalityoflifeofpeoplewithdementia,and
whereapplicable,theircaregivers/supporters?
5. HowmightCitizenSciencebestbeappliedinthecontextofdementia?
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Methods
InterventionOverview
TheDementiaCitizensBookofYou(DCBY)appisaLSWappforiOSdevicesthatenables
userstocreateapersonaliseddigitallifestorybookmadeupofchaptersandpages.Itwas
adaptedandsimplifiedfromanexistingweb-basedsystemtofunctionasaniOS
touchscreenapp,andincluderesearchcomponents.Thedeveloperscarriedoutthree
phasesofresearch,inwhichtheyinterviewedasmallnumberofpeoplelivingwith
dementia,andtheircaregivers.Inphase1theyexploreduserperspectives(n=14)ofthe
ideaoftheinitiativeandkeyfeatures.Phase2wascarriedouttogatherreactionstoan
earlyprototypeoftheappandestablishimprovementstobemade(n=16).Following
adjustmentsbasedonpreviousfeedback,phase3and4werecarriedoutovera2-week
period.Inthesephases,reactionsandopinionsofpeoplewithdementiaandcaregiversto
theappweresought(n=8)sothatfinalimprovementscouldbemadebeforethelaunch.
Theappincludessixchaptersuggestions(e.g.Childhood)eachcontainingthree
suggestionsofpagetitles(e.g.School,Toys,Pets).Therewerealsooptionstoaddnew
chaptersandpages,withfreetexttitles.Userscouldaddphotographsfromtheirdevice,
takenewphotographs,orsearchforimagesusinganinbuiltGoogleImageSearch.Theapp
alsohadanaudiorecorderthatenableduserstorecordmusicoraudionarrationto
accompanytheirphotos.Therewasalsoanoptiontoaddtextcaptionstophotographsor
videos.Allofthemediafeatureswerelocalmeaningthatusersdidnothavetonavigate
awayfromtheapptoengagewiththefeatures.Theappalsoincludedguidanceand
instructionsonhowtocreatealifestorybookandusetheapp.Inadditiontothedigitallife
storybookplatform,theappcontainedseveralresearchelements.ScreenshotsoftheDCBY
userinterfacearepresentedinFigure4.1.
Design
Thisstudywasdesignedasa3-monthsinglegroup(repeated-measures)studyinwhich
participantsusetheDCBYappandfilloutthequantitativemeasuresovera3-month
period.Inasecondphase,follow-upfeedbackwassoughtfromthosewhohadregistered
interestinthestudy.
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Figure4.1.ScreenshotsofDementiaCitizensBookofYouappuserinterface
Participants
Participantswerepeoplewithadiagnosisofdementia,andtheircaregiverslivinginthe
UK.Inthiscontext,thetermcaregiverreferstoarelative,friend,orprofessionalcaregiver
whoseesthepersonwithdementiaonaregularbasis.Peoplewithdementiacouldalso
takepartindependently.
Potentialparticipantswereidentifiedandcontactedthroughvariouspathways.Join
DementiaResearch(JDR)wastheprimaryrecruitmenttool.JDRisanationwidedatabase,
operatedbytheNationalInstituteofHealthResearch,ofpeoplewithdementia,carersand
otherswhoareinterestedinparticipatingindementiaresearch.Itmatchespotential
participantswithappropriateresearchprojects.Researchersalsodistributedflyersand
informationsheetsatdementia-relatedevents.Tocontact‘hardertoreach'people,
organisationssuchastheAlzheimer’sSocietyandAgeCymrualreadyincontactwiththe
targetpopulationwereusedtoshareinformationaboutthestudywithpotentially
interestedparties.
Theinclusioncriteriaforthestudyrequiredthatparticipantsbeapersonliving
withdementiawiththementalcapacity(DepartmentofHealth,2005)toconsentto
participateintheresearch.Boththoselivingincarehomesandthosewhowere
community-dwellingcouldtakepart.Wherecaregiverswereinvolved,theinclusion
criteriarequiredthattheytakepartwithapersonwithdementiawhoisparticipatingin
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thestudy,andseethispersonatleastonceaweek.Participantsneededtoown,orhave
accessto,aniOSdevice(iPhone,iPad,oriPodTouch),andinternetconnection.
Atotalof3,070people(1,209peoplewithdementiaand1,861caregivers)
‘matched’withthestudyonJDR.Theresearchercontactedallmatcheswhoprovidedtheir
e-mailaddressandindicatedthatthey(ortheirrepresentative)wantedtobecontactedvia
e-mail.Therefore,371peoplewithdementiaand1,628caregiverswereapproached
throughJDR.Unfortunately,itwasnotpossibletodistinguishwhichrecruitmentpathways
participantscamefromwhentheysignedupforthestudy.However,itappearedthatJDR
recruitmentcontributedasignificantproportion,astherewasaclearassociationbetween
thenumberofJDRe-mailssenteachdayandthesubsequentnumberofstudysign-upson
thatday.
Attheendoftheinterventionperiod,anadditionalevaluationphasewascarried
out.Thosewhohadregisteredtheirinterest(n=388)ontheDementiaCitizenswebsite,
wereinvitedbye-mail(excluding27peoplewhounsubscribedfrome-mailalerts)torelay
theirthoughtsorexperiencesoftheDCBYappandtheinitiativeoverall.Potential
participantswereoffereda£5voucherasanincentivetotakepart.Thesame
inclusion/exclusioncriteriaapplied.
Procedure
ThisstudyobtainedethicalapprovalfromBangorUniversitySchoolofHealthcare
Sciences.DatacollectionbeganjustbeforetheformallaunchoftheappinJuly2016and
endedinDecember2016.
Theresearchercontacted‘matches’onJDRviae-mailwithinformationaboutthe
studyanddirectedthemtotheDementiaCitizenswebsite(AppendixF).Here,potential
participantswerepresentedwiththeinformationsheetandinclusioncriteria(Appendix
G).Thosewhowishedtotakepartenteredtheire-mailaddressandwereautomatically
sentinstructionsonhowtodownloadtheapp.Atthispoint,theresearchteamhadno
moredirectcontactwithpotentialparticipantsunlessitwasrequested.
Inadditiontothedigitallifestorybookplatform,theDCBYappincludes
informationsheets,consentforms,guidance,andoutcomeassessmentsrelatingtothe
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research.Upondownloadingtheapp,userswereagainpresentedwiththekeystudy
information(accompaniedbyillustrations)inaseriesofswipe-throughscreens.Here,
potentialparticipantswereaskedscreeningquestionstoensurethattheymetthe
inclusioncriteria(e.g.dementiadiagnosis,capacitytoconsent).
Consentformswerepresentedontheswipe-throughscreensafterthestudy
informationwaspresented.Aseriesofconsentstatementswerepresented,and
participantswereaskedtoindicatetheiragreementordisagreementbytickingabox.An
exampleofthisispresentedinFigure4.1.Ifparticipantsagreedwithallconsent
statements,theyenteredthestudyandtheappstartedcollectingandstoringdata.If
participantswithdementiaweretakingpartwithacaregiver,consentwasrequiredfrom
bothparties.Ifparticipantsdidnotconsenttotakepart,theywerestillabletousetheapp,
butitdidnotcontainresearchcomponentsorcollectanydata.
Ifconsentwasgiven,participantswerepresentedwithbaselineassessments.Upon
completionoftheseassessments,guidanceandinstructionsforcreatingadigitallife
storybookweredisplayedthroughanotherseriesofswipe-throughscreens.Here,
participantswereencouragedtousetheappatleasttwiceaweekforapproximately30
minuteseachtime.Inadditiontotheinformationprovidedwithintheapp,guidance
videoswereavailableontheDementiaCitizenswebsite.
Inasecondphase,follow-upfeedbackwassoughtfromthosewhowereinvolvedin
thestudy.However,theresearchercouldnotdistinguishbetweenthosewhohadgoneon
todownloadandusetheapp,andthosewhotooknoactionafterregisteringinterest.
Therefore,aninformationleaflet(AppendixG)andaninvitationtoparticipateinthis
additionalphaseofresearchwasdistributedtoallthosewhohadregisteredinterestinthe
appinadditiontosubscribingtoe-mailupdates(n=361).Thosewhowishedtotakepart
wereaskedtocontacttheresearcher,whothenorganisedaconvenienttimetotelephone
participants.Participantswithdementiawerealsogiventheoptionofcommunicatingvia
e-mail(twopeoplechosethisoption).Theresearcherexplainedthedetailsofthestudy,
whatwouldhappen,andobtainedverbalconsent(orwrittenconsentfromthose
respondingviae-mail).Interviewsweresemi-structured,andatopicguidewasused
(AppendixH).Thedatawasnotsubjecttoanalysis,Aftertheinterviewwascomplete,the
researcherarrangedtosendthe£5storevouchertotheparticipant.
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Measures
Withintheapp,therewerethreemainresearchcomponents.Thesewerepassivedata,
momentaryassessments,andoccasionalassessments.
Appusagedata.Theappautomaticallycollectedthefollowingdata:
• Usagefrequency
• Usageduration
• Firstandlasttimeaccessed
• Chaptertitlesuggestionsselected
• Pagetitlesuggestionsselected
• Numberofpagescreated
MomentaryAssessments.Momentaryassessmentswerepresentedeachtime
participantscompletedaLSWsession(maximumonceperday).Thesewereusedtoassess
theperson’sexperienceofthatLSWsession.Inthisstudy,a‘session’isdefinedasaseries
ofeventswithlessthantenminutesseparatingeachevent.Theassessmentsweremade
upofshortstatementsaboutthesession.Participantsrespondedonafive-pointsmiley-
faceLikertscale.Ahigherratingwasindicativeofamorepositiveexperience.Thosewho
wereparticipatingindependentlywerepresentedwithfourstatements.Ifparticipating
withacaregiver,boththepersonwithdementiaandtheircaregiverwerepresentedwith
fivestatements.StatementsarepresentedlaterinTable4.4.
OccasionalAssessments.Thesewerepresentedtoparticipantsatbaseline(after
givingconsent),sixweekspost-baseline(halfwaythroughtheintervention),and12weeks
post-baseline(attheendoftheintervention).
QualityofLife-Alzheimer’sDisease(QOL-AD;Logsdonetal.,2002).TheQOL-AD
isa13-itemquestionnairedesignedtomeasurequalityoflife.Itincludesbothaself-report
scaleandacaregiverproxyreportofthequalityoflifeofthepersonwithdementia.
Participantsareaskedtorespondtobrief,simplywordedquestionsabouttheircurrent
qualityoflifebyselectingoneoffourresponsechoices:poor,fair,goodorexcellent.All
itemsareratedaccordingtotheperson’scurrentqualityoflife(AppendixI).Thetotal
possiblescoreoneachscalerangesfrom13to52withahigherscoresignifyingabetter
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qualityoflife.TheQOL-ADistypicallyadministeredinaninterviewformat,butforthe
currentstudy,ithadtobeadaptedsothatitcouldbepresentedonascreenwithout
havinganinterviewerpresent.Fortheself-reportscale,textfromtheinterviewguidethat
issuppliedwiththeQOL-ADwasdisplayedonthescreenforeachquestion.Theproxy-
reportscalewaspresentedonlywherethepersonwithdementiaparticipatedwitha
caregiver.Theappautomaticallyinsertedthefirstnameofthepersonwithdementiathat
wasenteredduringthesign-upprocess,sothatacohesiveandunderstandablequestion
wasformed.Forbothscales,itwasnecessarytopresenttheresponsesverticallyrather
thanhorizontally(astheyappearinthepaperversion),duetothelayoutandsizeofthe
screen.ExamplesarepresentedinAppendixK.
ShortWarwickEdinburghMentalWell-BeingScale(SWEMWBS;Stewart-Brown
etal.,2009).Caregiverwell-beingwasmeasuredusingtheSWEMWBS.Thisscalehas
sevenitemsandasksparticipantstorespondtostatementsabouttheirexperienceover
thelasttwoweeks,onafive-pointLikertScalerangingfromnoneofthetimetoallofthe
time(AppendixJ).Possiblescoresrangefrom7to35,andahigherscoreisindicativeof
betterwell-being.Again,responseswerepresentedverticallyonthescreenratherthan
horizontally.Nootheradaptionsweremade.ExamplesarepresentedinAppendixK.
StatisticalAnalysis
SPSS24.0(IBMStatisticsInc.,Chicago,IL,USA)wasusedinalldataanalyses.
OccasionalAssessments.Wheretherewereresponsesatallthreetimepoints,a
non-parametricFriedmantestwasusedtoexploreiftherewasasignificantchangein
scoresoverthecourseoftheintervention.Wheretherewereresponsestojusttwotime-
points,apairedsamplest-testwascarriedouttoassessdifferences.PearsonProduct-
Momentcorrelationswerecarriedoutonusagedataandimprovementsinqualityoflife
scores.
MomentaryAssessments.Responsefrequencies,medians,andinter-quartile
rangeswerecalculated.
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Results
Table4.2summarisestheflowofrecruitment,whileparticipantcharacteristicsare
summarisedinTable4.3.Intotal,388peopleregisteredinterestinthestudy,134ofthese
downloadedtheDCBYapp,and101consentedtoparticipateintheinterventionand
research.Twenty-onepeopleacceptedtheinvitationtotakepartinfollow-upphone
interviews,thoughtwodidnotrespondaftertheirinitialacceptance.Therefore19people
(4peoplewithdementiaand15caregivers)participatedinthisfollow-upresearchand
wereinterviewedabouttheirexperienceswiththeDCBYapp.
Table4.2.Participantflowthroughthestudy
Action N
DCBYCitizenSciencestudy
RegisteredInterest 388
DownloadedDCBYapp 134
ConsentedtotakepartinPhase1(total) 185
• Personswithdementiaparticipatingwithcaregiver(i.e.indyads)
84
• Caregiversparticipatingwithapersonwithdementia(i.e.indyads)
84
• Personswithdementiaparticipatingindependently 17
Follow-upphoneinterviews
RegisteredforDementiaCitizense-mailcommunications 361
Invitedtotakepartinfollow-upphoneinterviews 361
Expressedinterestinparticipating 21
ConsentedtotakepartinPhase2(total) 19
• Participantswithdementia 4
• Caregivers 15
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Table4.3.Characteristicsofstudyparticipantsatbaseline.
Characteristics N(%)orMean(SD)Participantswithdementia N 101Age 74.93(11.14)Gender
• Male 39(38.6)• Female 61(60.4)
Livingsituation • Carehome 16(15.8)• Community-dwelling 85(84.2)
Caregivers N 84Age 56.35(11.81)Gender
• Male 15(17.9)• Female 69(82.1)
Usagedata
Pages.Ofthosewhoconsentedtoparticipating,55didnotcreateasinglepage.
Acrosstheother46participants,435pageswerecreatedintotal(Mean=9.46pages,
Median=5pages,Range=1-62pages).52%ofthese46participantscreatedatleastfive
pages.Themostpopularchaptertitleswere‘family’(33%),‘leisure’(21%),and
‘childhood’(20%).Themostpopularpagetitleswere‘Family’,‘School’,‘Hobbies’,‘Trips’,
‘WhereIGrewUp’,and‘Weddings’.FurtherdetailsarepresentedinFigure4.2.
Sessions.Theinformationandconsentprocesswasconsidereda‘session’meaning
thatall101consentingparticipantshadatleastonesession.70%ofparticipantshad5or
fewersessions,while21%had10ormore(Mean=5.9sessions,Median=3sessions).Just
3%ofparticipantscompletedtherequested24sessionsoverthe3-monthintervention.
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Figure4.2.Pagetitlesselectedbyparticipants
Time.Timespentusingtheappvarieddramaticallyandrangedfrom1.38minutes
to5.94hours(Median=11.28mins,IQR=28.5mins).‘Firstseen’and‘lastseen’dateswere
availableforeachparticipant.Thesewerethedatesthatparticipantsfirstaccessedand
lastaccessedtheapp.35%hadthesamefirst,andlastseendates.Overall,therewasa
medianof15days(IQR=52.5days)betweenfirstseenandlastseendates.
MomentaryAssessments
Fortyparticipantscompletedamomentaryassessmentatleastonce.19completedthem2
ormoretimes,while5completedthem5ormoretimes.Medianscoresarepresentedin
Table4.4.Oneachoftheitems,themedianscorewas4(ona5-pointscale),suggesting
relativelyhighlevelsofinterest,enjoymentandinvolvement.
OccasionalAssessments
Duetohighattritionandinconsistencyinquestionnairecompletion,onlybaselineand6-
weekdatafromtheQOL-AD(caregiverreport)andSWEMWBScouldbeincludedinthe
analysis.At12-weekspost-treatment,therewerejust6responsestotheQOL-AD
(caregiverreport)andSWEMWBS.
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Table4.4.MomentaryAssessmentScores
Question n Minimum MaximumMedian
(IQR)
Personwithdementia
Q1.Iwasinterested 96 2 5 4(1)
Q2.Ienjoyedit 96 2 5 4(2)
Q3.Ifeltinvolved 96 2 5 4(2)
Q4.Ifeelcheerfulrightnow 96 2 5 4(1)
Q5.Itwasgoodtosharememories
(ifcarerpresent)53 3 5 4(2)
Caregiver(ifpresent)
Q1.Iwasinterested 53 3 5 4(1)
Q2.Ienjoyedit 52 3 5 4(1)
Q3.Ifeltinvolved 53 3 5 4(1)
Q4.Ifeelcheerfulrightnow 53 2 5 4(1)
Q5.Comparedtothestartofthe
sessionIfeel53 3 5 4(1)
QOL-AD(self-report).ScoresontheQOL-AD(self-report)decreasedoverthe
courseoftheinterventionbetweenbaseline(M=33.59,SD=7.21),6weekspost-baseline
(M=28.88,SD=6.46),and12weekspost-baseline(M=28.46,SD=5.84).However,anon-
parametricFriedmantestontheQOL-ADshowedthatthesechangeswerenotstatistically
significant,c2(2,N=11)=1.25,p>0.05.
QOL-AD(caregiverreport).ScoresonthecaregiverversionoftheQOL-AD(n=11)
decreasedbetweenbaseline(M=30.27,SD=6.25)and6-weekspost-baseline(M=28.46,
SD=5.99).Again,thisdifferenceinscoreswasnotstatisticallysignificant(t(12)=1.95,p=
0.075).
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SWEMWBS.OntheSWEMWBS(n=11),therewaslittledifferencebetweenscores
atbaseline(M=23.46,SD=4.16)and6-weekspostbaseline(M=23.25,SD=4.72).This
changewasnotstatisticallysignificant(t(12)=-0.297,p=0.772).
Correlations.PearsonProduct-Momentcorrelationswerecarriedouttoexploreifthere
wasarelationshipbetweenthenumberofpagescreated,andimprovementsonmeasures
ofqualityoflife(incaseswhereatleasttwotime-pointscompleted).Therewasno
significantcorrelationbetweenthenumberofpagescreatedandimprovedperformance
onself-reportqualityoflifemeasuresforparticipantswithdementia(QOL-AD;r(18)=-
0.115,p=0.77),orcaregivers(SWEMWBS;r(10)=0.015,p=0.96).Correlationswere
alsonotsignificantbetweenthenumberofsessionscompletedandimprovementsin
performanceonqualityoflifemeasuresforparticipantswithdementiaontheQOL-AD(r
(20)=-0.12,p=0.61)orcaregiversontheSWEMWBS(r(12)=-0.34,p=0.24).Finally,
therewasalsonosignificantcorrelationbetweentimespentusingtheappandimproved
performanceonqualityoflifemeasuresforparticipantswithdementiaontheQOL-AD,(r
(20)=-0.12,p=0.61)orcaregiversontheSWEMWBS(r(12)=-0.43,p<0.126).
Follow-upFeedback
ParticipantswithDementia
Fourpeoplewithdementiaprovidedtheiropinionsontheinterventionandtheapp.Two
preferredtocommunicateviae-mail,ratherthanbyphone.Thethreeparticipantswho
usedtheapp(Robert,Peter,Patricia),didsoindependently.
Robert.Robertwasinterviewedoverthephone.Hewasafrequentuseroftheapp
butfeltangryandfrustratedatthenumberofautomatede-mailshereceivedandthe
numberofappupdatesthatwererequired.Theappwashostedonaplatformthatsent
automatede-mailstotheuserwhenitneededtobeupdated.Robertwassigneduptoboth
oftheappsintheDementiaCitizensinitiative.Therefore,hereceiveddoublethenumber
ofe-mails.Hefoundtheupdates“extremelycomplicated”.Robertwasoriginally
enthusiasticabouttheappandtheideabutfelttheappwaspoorlydesigned(heisa
retireddesignerhimself).HewasvisitedbyavolunteerfromtheAlzheimer’sSocietyona
weeklybasis,andthevolunteeralsostruggledtounderstandtheappupdates.The
researcherassistedRobertwithupdatingtheapp,andheplannedtocontinueusingit.
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Sarah.Sarahpreferredtocommunicateviae-mail.Sheisverykeentoparticipatein
treatmenttrialsandfeltthattheDCBYappinterventionwouldnotbeofhelptoher.
"TobequitefrankthereasonwhyIdidnotpursuethisprojectwasthatIthoughtit
lookedabitlike"dosomethingism,"i.e."wehavetodosomething.Thisissomething,
sowewilldoit."Iwascompletelyunabletoseethattheprogrammewouldbenefit
me,andonthecontrary,expectedittoproveirritating".
"…thosearemyfeelings,andtheyareunlikelytochangeunlesssciencecomesupwith
somethingsolidandsuccessful,which,inmyview,theBookofYou(theDCBYapp)
wasnot."
Paul.Paulpreferredtocommunicateviae-mail.Helikedtheideaoftheappbutfelt
thefunctionalitywaslimited.
“Downloadingtheappwasfine.Theresearchquestionscouldhavebeenabitless
vaguebutwerefinetoanswer.Asfortheapp,Ifounditatadbasiccomparedtoones
ofasimilarnature.Youcouldn'tdomuchwithit.Istillthinkitwouldhavemadeit
morevaluableifitallowedyoutotypeunderphotosaswellasspeakasyou're
restrictingthenumberofpeoplewhocanuseitjusttoallowvoicerecording.The
theorywasgood,butitjustdidn'tdoitformeinpractice".
“Iuseiteachtimeyoureleaseanewversion(updates)totryandworkoutwhat's
changed.I'mnotsureIfoundoutsoitwouldalwaysbeusefulforyoutosay”.
Patricia.Patriciahasvasculardementiaandsomeproblemswithhereyesight,
thoughshecouldseethescreenandthecoloursquiteclearly.Shedidnothaveany
problemsdownloadingtheappbutwhenshetriedtouseitshefoundittoocomplicated.
Shefelttherewastoomuchinformationtodigestandtheinformation(swipe-through)
screens“wentonandon”.Thispreventedherfrombeingabletothinkclearlyandmade
hermindfeel“hazy”.Everytimeshetriedtousetheappshefelt“unabletothinkabout
anything”.Patriciatoldusthatshewouldhavelikedtousetheappbuttheinformation
overloadpreventedherfromdoingso.
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CaregiversFollow-upfeedbackwasprovidedby15caregivers.FurtherinformationisoutlinedinTable4.5.Allinterviewswerecarriedoutoverthephone.
TheIdea.Thereweremixedreactionsabouttheideaofdoinglifestorywork.
“Whenyousetit(alifestorybook)upitkindofhitsyou.It’sagoodpositivethingbut
alsoscarybecauseyourememberthepersontheyshouldhavebeen.Youtrytoavoid
thatsubconsciouslybutitbringsitback”(Sophie)
“Ilikedtheidea(oflifestorywork)butIcouldn'tfaceit”(Peter)
“IthoughtitwasagreatideaandIwantedtodoitforMum.However,whenIsat
downtolookatitproperlyitsoundedverytimeintensive”(Catherine)
“EvenifIdiduseitIdidn'tseehowitwasgoingtobehelpfulanditlookedtime
consuming”(Dawn)
“Ilovedthatyoucouldloadphotosontoitbecauseyoucancarryiteverywhere.That’s
whatIreallyliked.It’ssomucheasierthanhavingtositdownandputphotosinto
albums"(Aileen)
DCBYappusability.Mostofthecaregiversintervieweddidnothaveproblems
downloadingtheapp,thoughsomedidnotreachthatpointastheyhadthewrongdevice
orweren’tinterestedaftertheylearnedmoreaboutit.
“Downloadingitwasquiteeasytofollow”(Fionnuala)
"Theinstallationwasfine,butwhenIrealisedwhatitwasIgaveupontryingtobe
involvedwithit”(Peter)
“Noproblemswithinstalling,downloadingandlookedasthoughveryeasyto
operate…Easytouseandeasytofollow”(Aileen)
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Mostcaregiverswhousedtheappfeltthatitwasstraightforward(despitesomehaving
limitedICTskills),thoughonepersonstruggledtoaddaudioandmusicrecordings.
"Imanagedtouploadphotos,andImanagedtogetmusic.IdiditonmyiPadand
founditeasytodo.Thetechnologydidn'tworryme"(Noleen)
“Itwaseasytouseandeasytofollow”(Aileen)
"Ilikedeverythingaboutit,andallthecategoriesaregood,butIpersonallyfindthem
overwhelming"(Sophie)
“IfounditeasytouseandintuitivethoughIdidn’treallygetintothe‘nutsandbolts’
ofit”(Jane)
OnecaregiverwasdisappointedwhensheboughtanewiPadandrealisedthatshecould
nottransfertheappandbookshehadbeenbuildingupacrossfromheroldone
“IgotanewiPadandpresumedIwouldbeabletousethesameappbutIcouldn’t”
(Ruth)
ExperienceswiththeDCBYapp.Privacyandsecurityconcernsaffectedtwoofthe
participantsinterviewed.Inonecase,acaregiverwasverykeentoparticipateandusethe
appwithherhusband,buthewasputoffbytheethicalandconsentdeclarations.Another
caregiverdidnotagreetothetermsandconditionsoftheappassheuseshermobile
phoneforonlinebanking.
“Hedecidedhedidn'twantanythingtodowithitbecausetheethicsformmadehim
anxious…Iwasdyingtodoit,buthefeltstronglyaboutit"(Aileen)
“Ididn'tgoveryfarbecauseIdidn'tagreetothetermsandconditions.I'mvery
particularaboutwhatIputonmyphone.Iuseitforonlinebanking"(Fionnuala)
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Table4.5.Caregivercharacteristicsinfollow-upinterview
Pseudonym Type Pointdroppedout Reason
Ellen Professional Aftertwomonthsofuse Healthofpersonwithdementia
Mary Family Beforeregisteringinterest Ideadidnotappealtothem
Peter Family Betweendownloadingandconsent LSWtoodifficult
Dawn Family Betweendownloadingandconsent Didnotthinkappwouldbehelpful
Fionnuala Family Consent Privacy/security
Aileen Family Consent Privacy/security
Jennifer Family Registeredinterest Lackoftime
Sophie Family AfteroneLSWsession Lackoftime
Sheila Family Aftertwoweeks Healthofpersonwithdementia
Noreen Professional Afteronemonth Lackoftime
Jane Professional Betweendownloadingandconsent Couldn’tcreatemultipleprofiles
Rhonda Family Afterregisteringinterest Wrongdevice
Ruth Friend After8-10weeks ITproblems(couldnotaddmorepages)
Caroline Family Afterregisteringinterest DeviceCatherine Family Onboarding Lackoftime
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Ingeneral,experiencesusingtheappwerepositiveamongthecaregiversinterviewed,
thoughnonehaduseditforthefull3-months.
"ItwasgoodformebecauseIlearnedstuff,butIdon'tthinkhewasreally
understandingwhatweweredoingandwhatweweretryingto…Iwouldcertainlysay
tootherpeoplethattheyshoulddownloadanduseit.It'sexcellent”(Sheila)
“TheappwashelpfulbecauseitwasatalkingpointandmyMumfeelsencouraged
whensheremembersthings.Iwillstartusingitagain…Itwasveryusefultobeableto
talkthroughthings”(Noreen)
“Shewasenjoyingusingitbutbecameveryconfusedandhadshortattentionspan”
(Ellen)
Theresearchelements.Caregivershadmixedreactionsregardingtheresearch
elementsintheapp.
“Thequestionnaireswereveryrelevant”(Ellen)
“WhenIwasdoingitwiththeladyIlookafter,whenIwasdoingthequestionsIfelt
theyweretoolong-winded.Itdependswhatstageyou'reat.BythetimeIgottothe
thirdoption,shewouldaskwhatIsaidthefirsttime"(Ruth)
“Thequestionswerereasonabletheywerefine.Ilikedsmileyfaces”(Sheila)
“She[thepersonwithdementia]wouldalwaysjustpointtohappysmiley.Ididn't
thinksheenjoyeditsometimes,butshejustpickedthelastchoice.Idon'tknowifit
wasreallyaccurateofherexperience"(Ellen)
Insomecases,caregiversreportedthattheyhadrespondedtothequestionnaires,orpartsofthequestionnaires,onbehalfofthepersonwithdementiaastheycouldnotdoit
themselves.
112
“…onafewofthequestionsIansweredforherbecauseIknewshewouldn'tbeableto
answersome…Iinterpretedwhatshethoughtandansweredforher(thepersonwith
dementia)”(Noleen)
“Ihadtoansweron[thepersonwithdementia’s]behalfbecausetheyweretoohard
forhim”(Sheila)
Onecaregiverfoundthesmileyfacemomentaryassessmentscalesslightlyconfusing,as
sometimestheycameupanddidn’trelatetowhatshehadbeendoing.Thiscaregiver
addedmaterialstotheappinpreparationforgoingtovisitherrelativeandwouldthenbe
askedaboutherexperienceoftheLSWsessionwhichdidnotmakesensetoher.
Notificationstocompletefeedbackwereautomated,meaningit’spossiblethishappenedto
otherparticipantstoo.
“Whenthequestionscameup,itwasalittlebitconfusingformebecauseitwouldn't
necessarilyrelatetowhatIhadbeendoing”(Noleen).
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Discussion
Thisstudyisoneofthefirsttouseaself-guideddigitalCitizenScienceapproachwithpeoplelivingwithdementiaandtheircaregivers.Itisalsothefirststudytoimplementa
self-guided,app-basedLSWinterventionwiththispopulationtodate.Thisresearchaimed
toinvestigateparticipants’generalexperiencesusingthisappinrelationtoday-to-dayuse
andqualityoflife,andexplorethefeasibilityoftheapp,andhowaCitizenScience
approachmaybebestappliedinthecontextofdementia.
Givenengagementandretentionlevelsinthecurrentstudy,itwouldappearthat
thisparticularimplementationofthisinterventionisnotfeasibleforpeoplelivingwith
dementiaandtheircaregivers.Despiteinitialinterestintheapp,65%ofpotential
participantswerelostbetweenreceivingdownloadinstructionsanddownloadingtheapp.
Thissuggeststhatthedownloadprocessmayhavebeenasizeablebarrier.Ofthosewho
downloadedtheapp,25%didnotconsenttoparticipateinthestudymeaningthat,intotal,
almost75%ofpotentialparticipantswerelostbeforethestudybegan.Engagementwas
lowamongconsentingparticipants,withapproximatelyhalfnotaddingasinglepagetotheirdigitallifestorybook.One-fifthofparticipantshadatleast10LSWsessions,though
thiswasstillsignificantlylowerthantherequestedminimumof24sessionsoverthe
courseoftheintervention,which3%ofparticipantscompleted.Thecorrelationbetween
improvedSWEMWBSperformanceandtimespentusingtheappisrelativelyhigh(even
thoughitisnotsignificant),potentiallysuggestingthatcaregiverswithmorepositivewell-
beingpersistedmorewiththeapp.Whenretentionandresponseratesofconsenting
participantsarecomparedtootherapps,theresultsarenottoodissimilar.Average
retentioningeneralapps(acrossallindustries)is25%inmonth2and20%inmonth3
(Perro,2017).Inthecurrentstudy,retentionwasslightlyhigherwith33.7%of
participantsretainedinmonth2,and22.8%inmonth3.Perro(2017)defined‘retention’
asapersonreturningtotheappatleastoncein30days.Whenweexplorefurther,77.2%
ofconsentingDCBYparticipantslastaccessedtheappbeforeday60and82%beforeday
90.However,thisisnotnecessarilyindicativeofengagement,butratherthenumberofdaysbetweenthefirstandlasttimeparticipantsaccessedtheapp.WhiletheDCBYapp
performedslightlybetterthangeneralappsintermsofretention,italsorequiredmore
engagementandcommitmentthanastandardapp,andretentionaloneisnotenoughtobe
anindicatorof‘success’.
114
Inthe‘mPower’study,87.4%ofparticipantscompletedatleastonestudy‘task’
whichwasgreaterthanthe77.2%ofparticipantswhocompletedatleastonequalityoflifequestionnaire.Throughoutthe6-monthstudy,9.4%of‘mPower’participantscontributed
dataonatleastfiveseparateoccasions(Botetal.,2016).Inthecurrentstudy,just5%of
participantsfilledoutpost-sessionfeedbackfiveormoretimesacrossthe3-month
interventionperiod.However,itshouldbenotedthatthe‘mPower’studyinvolvedalmost
10,000participantsandwaspurelyobservational,unlikethecurrentstudywhich
comprised101participantsandrequiredengagementwiththeinterventionbeforehaving
theoptiontocompletepost-sessionfeedback.Mulvennaandcolleagues(2017)carriedout
abehaviouralusageanalysisofhow28peoplewithdementiaandtheircaregiversuseda
reminiscenceapp.Thismethodofdatacollectionissimilartotheusagedatathatwas
automaticallycollectedbytheDCBYappinthecurrentstudy.Acrossthe12-weekstudy,
theappwasusedapproximatelyonceperweek,whichissignificantlymorethanthe
currentstudy.However,reminiscenceandapptrainingwasprovidedtoparticipants
beforetheinterventionbegan,unlikethecurrentstudyinwhichparticipantsreceived
guidancesolelythroughtheapp.
Responsestopost-sessionfeedbackindicatedthatbothparticipantswithdementia
andcaregivershadpositiveexperienceswiththeapponanumberoffactorsincluding
enjoyment,involvementandinterest.ThisissimilartopreviousstudiesofdigitalLSW
interventions,inwhichbothparticipantsandcaregiversfoundLSWenjoyableand
interesting,thoughtheseweresupportedinterventions(Damianakisetal.,2009;Massimi
etal.,2008;Subramaniam&Woods,2016).However,post-sessionfeedbackresponse
rateswerelow,withjustfiveparticipantsrespondingonfiveormoreoccasions.On
qualityoflifemeasures,nosignificantdifferenceswereobservedbetweenbaselineand
latertimepoints,sothereisnoevidencefromthisstudythattheDCBYapphadanimpact
onparticipants’qualityoflife.Furthermore,therewasnocorrelationbetweenusageand
improvedqualityoflife,thoughthesamplesizesintheanalysesweresmall.
Qualitativefeedbackwasvaried,withrespondentscitingseveraldifferentreasons
fornot,ornolonger,engagingwiththeDCBYapp.Amongcaregivers,reasonsrelatedto
ICTwerecitedmostoften,thoughthosewhousedtheappfeltitwasrelatively
straightforwardtonavigate.Otherreasonsincludedparticipanthealth,theideaofLSW,
115
andalackoftime.Participantswithdementiaalsohadmixedresponses,withnoone
specificreasonstandingout.Onepersondidnotusetheappastheyfeltitwouldnotbe
helpful,twohadICTrelatedproblems,andanotherfelttheappwastoobasiccomparedtootherapps.Overall,experienceswiththeappweremixedbutpositiveinmostcases.None
oftheparticipantswhogavefollow-upfeedbackengagedwiththeappforthefull3-month
intervention.Participantshadgenerallypositiveattitudestowardstheresearchelements
withintheapp,butthereisaneedforfurtherdevelopmenttoensuretheyarepresentedat
therightmoments.
CitizenScienceoccursatseverallevelsandintensities,whichinturnaffectsthe
experiencesandmotivationsofparticipants(DenBroederetal.,2016;Socientize
Consortium,2013).ApplyingDenBroederandcolleagues’(2016)descriptiveframework
(Table4.1),theaimsofthecurrentstudyfitbestwith‘collectivegoods’whilethesizecan
bedescribedas‘mass’.However,locatingtheapproachofthecurrentstudywithinthe
frameworkismoredifficult.Althoughtherewasasmallamountofparticipatorydesignin
thedevelopmentoftheapp,itwasnotenoughtobeconsidered‘participatoryscience’.On
theotherhand,theapproachconsistedofmorethan‘crowdsourcing’,asparticipantswerenotsimply‘sensors’.Asthecurrentapproachwasrelativelylow-levelCitizenScience,
someimportantexternalparticipantmotivatorswerenotfacilitated,suchaslearningnew
information,feelingpartofateam,financialincentive(excludingfollow-upqualitative
interviewparticipants),andreceivingrecognitionandfeedback(Jennett,Furnissetal.,
2014;SocientizeConsortium,2013).Perhapswithmoresupportandvalidation,in
additiontoparticipantsplayingagreaterroleinthedevelopmentoftheintervention,
engagementandretentionlevelscouldbeimproved.Anotherpotentialfactoraffecting
motivationmaybethattheinterventionrequirestimeandefforttocreateaLSBbeforeit
canbeusedprimarilyforviewing.Similarly,someofthemainbenefitsofCitizenScience
forparticipantslistedbyDenBroederandcolleagues(2016)suchasenhancedscientific
literacyandnewskillsandabilities,werenotpresentinthecurrentapproach.However,
theissueremainsthatthemajorityofresearchintoCitizenSciencehasbeenconductedin
thephysicalsciences,inwhichparticipantsarecontributinginformationabouttheirsurroundingsratherthanthemselves.Usingthisapproachtoexplorepeople’spersonal
experiencesmayhaveimplicationsformotivation,thatareyettobediscovered(Follett&
Strezov,2015;Jennett,Furniss,etal.,2014).
116
Limitations
Aclearlimitationofthisstudywasthesamplesize,whichdeclinedoverthethree-monthinterventionperiod,meaningthatthequantitativeanalysesarelikelynotrepresentative.
Furthermore,theappwasonlycompatiblewithiOSdevicesmeaningthatthepoolof
potentialparticipantswasrelativelysmall,makingtheanalysesmorevulnerableto
decliningretentionrates.Althoughitwaspossibletolookatoverallengagementwiththe
appthroughthenumberofsessionsandpagescreated,itwasdifficulttoexplore
engagementovertime,withtheexceptionofexaminingresponsestoquantitative
measuresandfirst/lastaccessdates.Asidefromthosewhoparticipatedinthequalitative
feedbackportionoftheresearch,theappdidnotprovidethefacilityofobtaining
additionalparticipantfeedback.
Implicationsandfutureresearch
Asanapproach,CitizenSciencehasthepotentialtobefeasiblewiththispopulation.There
washighinterestinthisintervention,butmoremotivatorsandfewerbarriersare
requiredtokeepparticipantsengaged.Furthermore,thereisalargemovementtowardsparticipatorydementiaresearch,withpeoplelivingwithdementiaadvocatingtobemore
involvedinresearchmeaningthereisscopefordigitalCitizenSciencetypeapproaches
(Bryden,2016;ScottishDementiaWorkingGroupResearchSub-Group,2014).Although
thisworkdidnotmeetsomeoftheintendedresearchaims,itprovidesinsightsonboth
thesuccessesandshortcomingsofadigitalCitizenScienceapproachandanapp-based
LSWinterventionforpeoplewithdementiaandtheircaregivers.Italsohighlightsthe
potentialforthelocalpost-sessionresearchelementstocollectdataregardingusability
andfeasibility.
Futureresearchshouldaddressthelimitationsofthecurrentstudy.Studytasks
shouldbemoremanageable,haveasimplifieddownloadprocess,providemorefeedback
tousers,andhavesimplifiedICTfunctionality.Peoplelivingwithdementiaandcaregivers
shouldbeinvolvedinthedevelopmentoftheinterventionandresearchtoagreaterextent.Pilottestinglastingatleasthalfofthelengthoftheprojectedinterventionwouldbe
helpful,toexplorepotentialattrition.Largernumbersofparticipantsshouldberecruited
attheoutset,sothatresearchanalysesarestillpossibledespitetheseeminglyinevitable
declineinretentionratesacrossallapps,bothhealthresearchrelated,andingeneral.
117
Conclusion
Theself-guideddigitallifestorybookappdeliveredthroughaCitizenScienceapproach
wasnotasuccessfulinterventionforpeoplewithdementiaandtheircaregivers.Engagementwaslow,andnosignificanteffectsonanymeasureswereidentified.However,
theredoesappeartobepotentialforusingdigitalCitizenScienceapproacheswithpeople
withdementiaandtheircaregiversasthereisinterestamongthisgroupinthistypeof
approach.
118
Chapter5.Thepreferencesofpeoplelivingdementiaandcaregiversinrelationto
digitallifestorywork:Asurveyanddiscretechoiceexperiment.
119
Summary
Littleisunderstoodabouttheoptimalwaytoimplementdigitallifestorywork(LSW)withpeoplewithdementiaandtheircaregivers.Theaimofthischapterwastoexplorethe
preferencesofthesepeoplewithdementiaandtheircaregiversinrelationtodigitalLSW,
toimprovefutureengagement.Therewere67caregiverrespondentsonanonlinediscrete
choiceexperiment(DCE)surveycontaining16pairwisechoices.Attributesincluded
setting,usabilityandaccessibility,price,sessionfocus,andfollow-upassistance.TheDCE
wasanalysedusingarandomeffectslogitmodel.Willingnesstopayandoddsratioswere
alsocalculated.Anabridgedonlinesurveywascompletedby17peoplewithdementia,in
whichtheyalsomadechoicesaboutdifferentaspectsofdigitalLSWservices.Caregivers
valued4outof5attributesintheDCE[setting(p=0.000),price(p=0.000),advanced
usabilityandaccessibility(p=0.001),andfollow-upassistance(p=0.034)].Datafrom
participantswithdementiashowedthatthemostpreferredsettingwasanindividualone-
to-onesetting(70.6%),andthemostpreferreduseofdigitallifestorybookswastoshare
memorieswithothers(64.7%).Marginallymoreparticipantswithdementiasaidthey
wouldpayfortheservice(53%)ratherthanonlyuseitfreeofcharge(47%).Thosewithadvancedinformationandcommunicationtechnology(ICT)skillspreferredtolearnhow
tousethedigitallifestorybook(64.7%),whilethosewithelementary/intermediateskills,
preferredtohaveitcreatedforthem(35.3%).Thisexploratorystudyprovidesaninsight
intopreferencesofpeoplewithdementiaandcaregivers,ofhowdigitalLSWservicesare
implemented.ResultssuggestthatICTcanplayasignificantroleinhowpeoplewith
dementiaandcaregiverswantdigitalLSWtobeimplemented.Theworkpresentedinthis
chaptercancontributetofutureplanningandtailoringoftheseservices.
TheworkpresentedinthischapterhasbeensubmittedtoAlzheimer's&Dementiafor
considerationforpublicatio
120
Introduction
Intheabsenceofdisease-modifyingtreatments,themosteffectiveinterventionsforpeoplewithdementiaandtheircaregiversarethedevelopmentandprovisionofservices
tosupportthem(Nolan,Ryan,Enderby,&Reid,2002).LifeStoryWork(LSW)isapopular
psychosocialinterventionforpeoplewithdementiaandtheircaregivers.Itinvolves
talkingaboutlifeexperiencesandmemorieswithothersandusingthisinformationto
createsomekindoflifestoryrecordthatcanbenefitthepersononanongoingbasis
(McKeown,Clarke&Repper,2006;Murphy,2000).Itisviewedasaperson-centred
approach,withgettingtoknowthepersonatitsheart(McKeownetal.,2010;McKinney,
2017).LSWvaluesthepersonwithdementiaandcanfosterunderstandingofbiography,
behaviour,anddiscourse,inadditiontopromotingcommunication,reinforcingidentity,
andprovidingideasformeaningfuloccupation(Brooker,2004;Bruce&Schweitzer,2008;
Gridley,2017;McKeownetal.,2010).
Advancementsininformationandcommunicationtechnology(ICT)have
introducednewpossibilitiesforLSW.Multimediastimulisuchasvideo,audionarrationandmusic,cannowbeplacedalongsidetraditionaltextandphotographstocreateadigital
lifestorybook.SomesmallstudieshavefoundpromisingevidencethatdigitalLSWcan
benefitpeoplewithdementiaintheareasofcommunication,self-identity,qualityoflife,
mood,andenjoyment(Damianakisetal.,2010;Ludwin&Capstick,2015;Massimietal,
2008;Stenhouseetal.,2013;Subramaniam&Woods,2010;Subramaniam&Woods,
2016).
AlthoughLSWappearstobevaluableandenjoyableforpeoplelivingwithdementia
andcaregivers(McKeownetal.,2010;Subramaniam&Woods,2010),engagementand
uptakeremainanissue.Forexample,in3-and6-monthfollow-ups,Damianakisand
colleagues(2009)reportedthatsomeparticipantsviewedtheirdigitallifestorybooks
rarely(oncepermonth),despitebeingaskedtoviewitatleastonceperweek.Inthe
currentthesis,therehasbeenmixedengagementwithdigitallifestorybooks.InChapter4,134peopledownloadedadigitalLSWapp,but82%didnotreachthehalf-waypointofthe
3-monthintervention,and91%didnotcompleteit.Infollow-upqualitativefeedback,even
thosewhofounddigitallifestorybooksenjoyableandusefuldidnotremainengagedover
time.FollowingafacilitateddigitalLSWinterventioninChapter3,familycaregiversof
121
peoplewithdementiainLSWgroupsstatedthattheywouldonlycontinuetousetheir
digitallifestorybookiftheirrelative’sconditiondeteriorateddramatically,despitevaluing
andenjoyingit.Ontheotherhand,SubramaniamandWoods(2016)reportedthatallsixparticipantsintheirstudyviewedtheirdigitallifestorybooksseveraltimesperweek,with
someassistancefromcarestafftodoso.Inthisstudy,acompleted‘movie'wasprepared
forparticipants,withtheirinputrelatingtocontentandformat.Aspreviousresearch
interventionshavevariedgreatlyinrelationtosetting,sessionfocus,typesofdigitallife
storybook,andmodality(i.e.groupandindividual),itisnotentirelyclearwhichfactorsof
digitalLSWinterventionsordigitallifestorybooksaremostappealingtopeopleliving
withdementiaandtheircaregivers.Astherearesomanypotentialimplementationsof
digitalLSW,itisimportanttounderstanduserpreferencessothatwecanbegintopiece
togethertheoptimalmethodofdelivery,toimprovefutureengagement.
Onewayofelicitingpreferencesofhowservicesaredeliveredisthroughadiscrete
choiceexperiment(DCE).InDCEs,participantsmakechoicesbetweendifferent‘packages'
ofagoodorservice.ThismethoddrawsuponLancaster's(1966)EconomicTheoryof
Value.Itassumesthatpeopleobtainvalue/benefitfromthedifferentattributesthatmakeupgoodsorservices,ratherthanthegoodsorservicesasawhole.Therefore,changesto
theattributesofagoodorservicemaycauseindividualstoswitchtoanothergoodor
servicethatwillprovideamorebeneficialcombinationofattributes.Essentially,DCEs
drawsoutthecharacteristicsofaparticulargoodorservicethatareimportantto
individualsbyconsideringtheirchoicesbetweendifferentgoodsorservicesthathave
varyinglevelsofthesameattributes.
Theaimofthisstudywastoexplorechoicesmadebypeoplelivingwithdementiaand
theircaregiversconcerningdigitalLSWservices.Toelicitpreferences,anonlineDCEfor
caregiversandasimpleonlinesurveyforpeoplelivingwithdementiawereused.This
studyaimstoaddressthefollowingresearchquestions:
1. WhatfeaturesofadigitalLSWserviceinterventionarepreferredbypeoplewithdementia?
2. WhatfeaturesofadigitalLSWserviceinterventionaremostimportantto
caregiversorsupportersofpeoplewithdementia?
122
Methods
Thisstudyhadtwoarms.InStudy1,participantswithdementiacompletedanonlinesurveyregardingtheirpreferencesofdigitalLSWservices.InStudy2,caregivers’
preferenceswereexploredusinganonlineDCE.Inbotharms,ahypotheticalLSWservice
waspresentedtoparticipants,includingadigitallifestorybookoperatedthroughanapp.
Study1
Participants
ParticipantswereaconveniencesampleofpeoplewithdementialivingintheUK.The
inclusioncriteriaforthestudyrequiredthatparticipantshavethementalcapacity
(DepartmentofHealth,2005)toconsenttoparticipate.Asthesurveywasonline,
participantsneededtoown,orhaveaccesstoacomputer,tabletcomputer,orsmartphone,
inadditiontoaninternetconnection.RecruitmenttookplacebetweentheMay17thand
July11th,2017.Participantswereoffereda£5storevoucherfortakingpartinthesurvey.
PotentialparticipantswereprimarilyidentifiedandcontactedthroughJoin
DementiaResearch(JDR).JDRisanationwidedatabaseofpeoplewithdementia,
caregivers,andotherswhoareinterestedinparticipatinginresearchondementia.Itis
operatedbytheNationalInstituteofHealthResearch,andmatchespotentialparticipants
withappropriateresearchstudies.SocialmediaandtheNorthWalesDementiaNetwork
werealsousedtocirculateinformationaboutthestudy.
SurveyDesign
ThesurveyinStudy1wasmodelledontheDCEinStudy2,thoughitwasgreatlysimplified
toavoidthecognitiveloadofaDCE.Previousqualitativeresearch(Chapter3)exploring
theexperiencesofpeoplewithdementiaandtheircaregiversofadigitalLSWservicewas
usedtoinformthesurveydesign.DiscussionswithaLSWserviceandaclinical
psychologistexperiencedinLSWalsocontributedtothesurveydesign.Thesurveycomprised10questions,andparticipantscouldsavetheirprogressandreturntothestudy
atalaterpointiftheywishedtotakeabreak.Aprogressbarkeptparticipantsinformedof
theirprogressionthroughoutthesurvey.
123
Procedure
Interestedparticipantswereprovidedwithalinktothesurveyviae-mail.Whenthey
clickedthelink,theywerefirstpresentedwiththeinformationsheetandadigitalconsentform(AppendixM).Ifconsentwasgiven,thesurveyopened.Participantswereaskedto
supplytheirageandgender,inadditiontotheirself-reportedICTskillsandanyprevious
experiencewithdigitalLSW.AbriefbackgroundofLSWandavideodescribingaLSW
servicewereprovided.Respondentswerethenaskedtoselecttheirpreferredchoiceof
setting,appusabilityandaccessibility,price,follow-upassistance,andsessionfocus.
Analysis
ResultswereanalysedinSPSSversion24.Descriptivestatisticswereusedtodescribethe
samplewhilefrequencydatawereusedtoillustratepreferences.
Study2
Participants
Participantswerecaregiversofpeoplewithdementia,livingintheUK.Inthiscontext,‘caregiver’referstoafamilymember,friend,orprofessionalcaregiverwhoseesthe
personwithdementiaregularly.Again,accesstotheinternetandacomputer,tablet
computer,orsmartphonewererequired.A£5storevoucherwasofferedtoparticipants
fortakingpartinthestudy.SimilartoStudy1,JDRwastheprimaryrecruitmentpathway,
andstudyinformationwasalsocirculatedusingsocialmediaandtheNorthWales
DementiaNetwork.RecruitmenttookplacebetweenMay17thandJuly11th,2017.
StudyDesign
ThepurposeofDCEsistoelicitpreferences.Theyareoftenusedinhealtheconomicsto
explorepreferencesconcerninghealthcareproductsandpackages.InaDCErespondents
areaskedtomakechoicesbetweenpairsofhypotheticalscenariosthatdescribeagoodor
service.Participantsarepresentedwithapairofscenarios,eachwiththesameattributes
butvaryinglevelsoftheseattributes.Forexample,theattribute‘price'couldhavelevelsof‘nocost',‘£25',and‘£50'.Onepairofscenariosisonechoiceset.Theattributes,levels,and
definitionspertainingtothecurrentstudyarepresentedinTable5.1,andanexampleofa
choicesetisshowninFigure5.1.Againpreviousresearch(Chapter3),anddiscussions
withanexperiencedclinicalpsychologistandLSWserviceinformedthesurveydesign.
124
TheDCEhad3attributeswith2levels,and2attributeswith3levels,resultingin
72potentialchoicesets(32x23).Anorthogonalmaineffectsplan(52a)fromapublished
designcatalogue(Hahn&Shapiro,1966)wasusedtoreducethistoamanageablenumber.This‘plan’informstheconstructionofthechoicesets.Accordingtotheplan,16choicesets
wererequiredtoensureorthogonality(showingpairsoflevelsproportionatelyoften).To
determinethenecessarysamplesize,a‘ruleofthumb’,thateachmaineffectlevelof
interestshouldberepresentedacrossthedesignatleast500times,wasapplied(Orme,
2010).Thereforeitwasestimatedthatatwo-alternative,forcedchoiceformatwith16
choicesets,wouldrequireaminimumof47participants.
Itwasnotpossibletoselectdominantchoicesets(thoseinwhichoneservice
containsallpreferredattributelevelsandtheothercontainstheleastpreferablelevels)
forremoval,astheinterventionwaspsychosocialandthe‘preferredoption'wasnot
apparentinmostattributes.TheDCEdidnotcontainanyadditionaltestsfortransitivity.
Thiswastoavoidincreasingthecognitiveloadbyaddingmorechoicesets.Here,
transitivityimpliesthatifapersonchoosesonepackageinachoiceset,theyshould
transitivelychoosethatsamepackageinanotherchoicesetwhereithasatleastoneadditionalpreferredlevelofanattribute,andhasnoinferiorlevelsoftheotherattributes
(McIntosh&Ryan,2002).Thesurveyalsocontaineddemographicquestionsand
comprised23itemsintotal.Again,participantscouldsavetheirprogressandreturntothe
surveyiftheywantedabreak.Aprogressbarkeptparticipantsinformedoftheir
progressionthroughout.
Procedure
SimilartoStudy1,potentialparticipantsweredirectedtothesurveythroughalinksent
viae-mail.Theywerefirstlypresentedwithaninformationsheetandconsentform.If
consentwasgiven,thesurveybegan.Participantswereaskedtoprovidetheirage,gender,
currentcaringsituation,andself-reportedICTskills.Again,participantsweregiven
generalinformationaboutLSWandabriefvideoaboutaLSWservicewasplayed.The
definitionsofattributesandlevelswerepresented(Table5.1),inadditiontoinstructionsandanexampleofhowtocompletetheDCE.Thedefinitiontablecouldbekeptopento
referbacktoifdesired.
125
Whichservicewouldyouprefer?
ServiceA� ServiceB�
Figure5.1.ExampleofaDCEchoiceset
Analysis
DataweremanagedinMicrosoftExcel(cleaningandorganising),SPSSversion24
(descriptivedata)andSTATAversion10(DCEdata).Arandomeffectslogitmodelwas
usedtoanalysethedata,andservicechoicewasthedependentvariable.
! =$% +$'()**+,- + $./0+1) +$23(45+6+*7 +$89:66:;3/ +$<9:13( + =
U=utilityderivedbyindividual
$%=constantterm$> =estimatedcoefficientforeachattributee=errorterm
Itwashypothesisedthatrespondentswouldpreferanindividualsetting,alowprice,a
follow-upLSWsessionandwrittenguidancemanual,basicaccessibilityandusability,and
thesessionfocustoinvolvelearninghowtousetheapp.Effectscodingwasusedtoinput
AspectofService ServiceA ServiceB
Setting Communitygroup Onetooneathome
Price£25 £50
Accessibility&Usability
Advanced Basic
FollowUpAssistance Manualonly Manualandworkshop
SessionFocus Bookbuiltforyou
Learninghowtousetheappandreceivehelpbuildingabook
126
qualitativeattributes(i.e.setting,accessibilityandusability,follow-upassistance,and
sessionfocus).As‘appaccessibilityandusability’hadthreelevels,onelevelwasselected
asa‘basecase’andomittedfromthemodel.Thecoefficientoftheomittedlevelwascalculatedbymultiplying-1bythesumoftheestimatedcoefficientsoftheothertwo
levels.Aspriceisavalueattribute,itwascodedusingthevalueofeachlevel(i.e.0,25,50).
LevelcodingispresentedinTable5.1.Confidenceintervalsforcoefficientswereestimated
usingnon-parametricbootstrappingmethods(Phillips,Maddala&Johnson,2002).A
simulationof1000non-parametricbootstrappingiterationswasruntocreate95%
confidenceintervalsaroundtheb-coefficient.Theb-coefficientvalueswereusedto
estimatetherelativeimportanceofeachattribute.Thep-valueandmagnitudeofthe
coefficientwereusedtorepresentthedegreeofpreferenceforeachoftheattributes.The
signofthecoefficientwasusedtodeterminewhichleveloftheattributewaspreferred
(onlywhereattributeshadtwolevelsandwerenon-value).Themarginalratesof
substitution(MRS)betweenpriceandother(statisticallysignificant)attributeswerethen
analysed.Thisrepresentstheamountofmoneytherespondentwaswillingtopayforone
levelofanattributeoveranother.Thesamenon-parametricbootstrappingmethodwas
usedtocreate95%confidenceintervalsaroundtheMRSestimates(Phillipsetal.,2002).
Subgroupanalysesofcaregivingsituationandself-reportedICTskillswereattempted,butnotpossibleduetothedistributionofsamplesizesinthesubgroups.Eachcoefficientwas
exponentiatedandreportedasanoddsratio.Oddsratiosgreaterthan1representpositive
utilities,wherebyrespondentshavegivenmoreimportancetotheattributelevel.Negative
oddsratiosbetween0and1,representalowerprobabilityofarespondentchoosingan
alternativewhenthisattributelevelisshown.
127
Table5.1.Attributes,levels,definitionsandcoding
Attributes Levels Leveldescriptionandeffectcoding()
Setting
GroupTheworkshopisinasmallgroupof6-8peoplewithdementiaandcaregivers.Ittakesplaceinacommunitysettingsuchasaroominacommunitycentreorlibrary.Avolunteerfromtheservicefacilitatestheworkshop(1)
Onetoone Theworkshopiswithonepersonwithdementiaandtheircaregiver(iftheywish).Ittakesplaceinthehomeofthepersonwithdementia/caregiver.Avolunteerfromtheservicefacilitatestheworkshop(0)
Price
Free Youdonotpayfortheservice(0)
£25 Youpay£25intotalfortheservice,lastingsixweeksfor2hoursperweek(25)
£50 Youpay£50intotalfortheservice,lastingsixweeksfor2hoursperweek(50)
Appaccessibilityandusability
Elementary Theappissimpletouse.TheskilllevelneededissimilartothatofusingFacebookandviewingnewsarticlesonline(basecase)
Intermediate Theappusabilityisintermediate.Theskilllevelneededissimilartothatofonlineshopping,playinggamesandusinge-mail.
Advanced Theappusabilityisadvanced.Theskilllevelneededissimilartothatofdownloadingapps,settingupprogrammessuchasDropboxoriCloud,andconfiguringsettings.
FollowUp
Manualonly Whenyoufinishtheworkshops,youaregivenawrittendetailedguideonhowtousethedigitallifestorybook(1)
Manualandfollowup
Whenyoufinishtheworkshops,youaregivenadetailedwrittenguideonhowtousethedigitallifestorybook,andyouhaveaonehourfollowupworkshopwiththesamevolunteer(0)
SessionFocus
Bookonly Thevolunteermakesadigitallifestorybookforyouduringtheworkshopswhileyoudictatethecontent(1)
Book&learnhowtouseapp
Avolunteerworkswithyoutoteachyouhowtousetheappandhelpyoutobuildyourdigitallifestorybook(0)
128
Results
Study1
Participantswithdementia
Allquestionnaireswerecompletedfully,exceptonewhichhadonequestionunanswered.
Thesurveywascompletedby17peoplewithdementia.Characteristicsofparticipants
withdementiaareoutlinedinTable5.2.
Surveyresponses
Mostparticipantswithdementia(71%)respondedthattheywouldprefertheintervention
settingtobeone-to-oneintheirhome,ratherthaninacommunitygroup(29%).Almost
two-thirds(65%)wantedtofocusonlearninghowtousetheappwhilebeingsupported
tocreatetheirowndigitallifestorybookduringthesessions.However,onlyparticipants
withself-reportedadvancedICTskillschosethisoption.Justoveronethird(35%)chose
thealternativeoptionofhavingtheservicebuildtheirlifestorybookforthem,undertheir
instruction.Oftheseparticipants,threehadelementary,andtwohadintermediate,self-
ratedICTskills.Nearlytwo-thirds(65%)ofparticipantsindicatedthattheywouldmainly
usetheirdigitallifestorybook‘tolookatwithfamilyandfriends,andenjoyshared
memories'.Theremainingresponsesweresplitevenlybetween‘tolookatonmyownand
enjoymemoriesandmusic’(17.5%)and‘toshowtonewpeopletohelpthemto
understandmylifeexperiencesandinterests’(17.5%).Whenfiveattributeswere
presentedtogether(seeTable5.3),‘beingtaughthowtousethedigitallifestorybookand
beinghelpedtocreatemydigitallifestorybook’wasthemostpopularchoice(41%),
followedby‘doinglifestoryworkindividuallyinmyhome’(23.5%),and‘havingthe
servicebuildmylifestorybookformewhileItellthemwhattoputinit’(17.6%).Thetwo
leastpopularattributeswere‘beinggivenawrittenguidancemanualonhowtousethe
bookaftertheworkshopsarefinished’(11.8%)and‘doinglifestoryworkinagroupina
communitycentreorlibrary’(5.9%).Whenpresentedwiththreepriceoptionsfora6-
weekdigitalLSWservice,marginallymoreparticipantssaidtheywouldpayfortheservice
(53%),thanonlyuseitfreeofcharge(47%).Ofthosewhorespondedthattheywouldpay
fortheservice,most(78%)indicatedthattheywouldconsiderasmallamountsuchas
£25,while22%wouldconsideramoresignificantsumsuchas£50.
129
Table5.2.Characteristicsofparticipantswithdementia
Characteristics N(%)orMean(SD)
N 17
Age 61.65(12.33)
Gender
Male 8(47.1)
Female 9(52.9)
Self-reportedICTskills
Elementary 3(18.8)
Intermediate 2(12.5)
Advanced 11(68.8)
HaveyoueverusedaLSWservicebefore?
Yes,adigitalservice 2(11.8)
Yes,anon-digitalservice 1(5.9)
Bothadigitalandnon-digitalservice 0(0)
No 14(82.4)
Other 0(0)
130
Table5.3.SurveyresponsesofparticipantswithdementiaCharacteristics N(%)orMean(SD)Settingpreference
Privateone-to-oneathome 12(70.6)
CommunityGroup 5(29.4)
Sessionfocuspreference
Servicebuildsalifestorybookformewithmyinstruction 6(35.3)
Learnhowtousetheappandbesupportedtobuildmyownlifestorybook 11(64.7)
Iwouldmostlyusemydigitallifestorybook
Tolookatonmyownandenjoymemoriesandmusic 3(17.6)
Tolookatwithfamilyandfriendsandenjoysharedmemories 11(64.7)
Toshowtonewpeopletohelpthemunderstandmylifeexperiencesandinterests 3(17.6)
Mostimportantthingwhendoinglifestorywork
DoingLifeStoryWorkinagroupinacommunitycentreorlibrary 1(5.9)
DoingLifeStoryWorkindividuallyinmyhome 4(23.5)
HavingtheservicebuildmylifestorybookformewhileItellthemwhattoputinit 3(17.6)
Beingtaughthowtousethedigitallifestorybookandhelpedtomakemyownone 7(41.2)
Beinggivenawritteninstructionguideonhowtousethebookaftertheworkshopsarefinished 2(11.8)
Payingfortheservice(6sessions,2hourseach)
Iwouldonlyuseitfreeofcharge 8(47.1)
£25 7(41.2)
£50 2(11.8)
131
Study2
Caregiverparticipants
Therewere67caregiverrespondentsinStudy2.Theanalysisincludedallcompleted
onlinesurveys.Acompletedsurveywasdefinedasatleast50%ofthechoicesetsbeing
completed.Twoparticipantsdidnotrespondtoall16choicesetsbutcompleted15and8
questionsrespectively.CharacteristicsofcaregiverparticipantsarepresentedinTable5.4.
Thesamplewaspredominantlyfemale,andmostparticipantshadadvancedself-reported
ICTskills.Oneparticipantresponded‘other’tothequestionabouttheircaregiving
situationbutdidnotelaboratefurther.Twoparticipantshadpreviousexperiencewith
LSW.Onehadseenapresentationaboutit,whiletheotherhadencounteredtraditional
LSWthroughasupportedlivingassociation.
PreferencesfordigitalLSWservices,magnitudeandstatisticalsignificanceof
resultsTable5.5showstheresultsoftheestimatedregressionmodel.Allattributeswere
inthedirectionofthea-priorihypotheses.Participantshadstrongandstatistically
significantpreferencesfortheinterventionsetting,preferringittotakeplaceone-to-oneat
homeratherthaninacommunitygroup(b=-0.802;p=0.000).Pricewastheonly
quantitativeattribute.Participantspreferredtopayalowerpricefortheservice,
evidencedbythenegativedirectionofthecoefficient(b=-0.019;p=0.000).Regardingapp
accessibilityandusability,participantswantedtoavoidanappthatwasofadvanced
usabilityandaccessibility(b=0.180;p=0.001).Theintermediateleveloftheaccessibility
andusabilityattributewasstatisticallysignificant(b=0.000;p=0.998).Asthebasiclevel
ofthisattributewasthebasecaseintheeffectscoding,itwasnotpossibletogenerateap-
value.However,astheconfidenceintervalpassed0inoneoftheotherlevels,itislikely
thatthebasiclevelwasnotsignificant.Follow-upassistancewasastatisticallysignificant
driverofpreferences,withanadditionalfollow-uplifestorysessionandaguidance
manualbeingpreferredtoamanualalone(b=-0.150;p=0.034).Thecoefficientforsession
focuswassmallandnotsignificant(b=-0.032;p=0.651).Theconstanttermwaspositive
andsignificant,suggestingthatrespondentswereconsideringotherattributesnot
includedinthecurrentDCE(b=0.164;p=0.023).MRSvaluesofwillingnesstopayarealso
presentedinTable5.5.Thesearethevaluesthatrespondentsplaceoneachattribute,
relativetoprice.Settingwasthemostimportantattributerelativetoprice,withcaregivers
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Table5.4.CharacteristicsofcaregiverrespondentsCharacteristics N(%)orMean(SD)N 67Age 54.12(16.34) Gender
Male 11(16.4)Female 56(83.6)
CaregivingSituation
ThepersonIcareforlivesinresidentialcare 22(32.8)ThepersonIcareforliveswithme 20(29.9)ThepersonIcareforlivesathomebutnotwithme
24(35.8)
Other
Self-reportedICTskills Elementary 2(3.0)Intermediate 27(40.9)Advanced 37(56.1)
HaveyoueverusedaLSWservicebefore?
Yes,adigitalservice 1(1.5)Yes,anon-digitalservice 2(3.0)Bothadigitalandnon-digitalservice 1(1.5)No 61(91)Other 2(3.0)
willingtopayanadditional£41.45foraserviceinanindividualsettingratherthana
communitygroup.TheMRSontheadvancedleveloftheaccessibilityandusability
attributeindicatesthatparticipantswouldpay£9.31lessfortheserviceifthiswasthe
case.Participantswerewillingtopayanadditional£7.75tohaveafollow-upsessionin
additiontoaguidancemanual,ratherthanamanualalone.
Whentheoddsratiosareinterpreted(Table5.5),aserviceinanindividualsetting
waspreferredtwiceasmuchasaserviceinagroupsetting,allelsebeingequal(OR=
0.45).Pricehadanoddsratioof0.98,withparticipantsshowingamarginalpreferencefor
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lessexpensiveinterventions.Whenappusabilityandaccessibilitywasadvanced,the
alternative(i.e.basicaccessibilityandusability)waspreferred(OR=1.20),while
intermediateusabilityandaccessibilityhadequalodds(OR=1)tothebasicalternative.In
follow-upsupport,theoddsofpreferringoneserviceoveranotherincreasedby0.14,
whenafollow-upmanualandanadditionalLSWsessionwereprovided.Forsessionfocus,
theoddsofchoosingaservicethattrainspeopletousetheapp,andsupportsthemto
createtheirowndigitallifestorybookweremarginallyhigherthanthealternativeof
havingtheirbookbuiltforthem(OR=0.97).
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Table5.5.Resultsoftherandom-effectslogitregressionmodel
Attributeb-
coefficient95%ConfidenceInterval PValue* OddsRatio MRS(£) 95%ConfidenceInterval
Setting -.802 -.960 -.644 .000 0.449 41.45 31.720 54.716
Price -.019 -.024 -.015 .000 0.981 -
Usability-Basic -.180 -
Usability-Inter
.000 -.129 .129 .998 1.000 -
Usability-Adv .180 .065 .296 .001 1.198 -9.317 -15.517 -3.557
Follow-UpAssistance -.150 -.297 -.003 .034 0.861 7.75 0.851 15.620
SessionFocus
-.032 -.184 .120 .651 0.969 -
Constant .164 .017 .310 .023 1.178 -
No.observations=1062;No.individuals=67;Waldchi2(6)=181.56;Loglikelihood=-609.96778*Statisticallysignificantatp<0.0595%confidenceintervalsgeneratedusingnon-parametricbootstrappingUsability&accessibilitybasecase(basic)calculatedbyassumingestimateforeffectscodedomittedvariable=-1(sumofestimatedlevels)Marginalrateofsubstitutionvalues=b-coefficientforsignificantattribute/b-coefficientforprice
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Discussion
ThisisoneofthefirststudiestoexplorethepreferencesofpeoplelivingwithdementiaandcaregiversinrelationtodigitalLSW.Throughadiscretechoiceexperiment,fourattributesthatsignificantlyshapedfamilycaregiverpreferenceswereidentified.Whenranked,theinterventionsettinghadthemostinfluenceoncaregiverpreferences,followedbyadvancedappusabilityandaccessibility,follow-upassistance,andthepriceoftheintervention.Usinganonlinesurveyofpeoplewithdementia,preferredfeaturesofdigitalLSWservicesinrelationtosetting,sessionfocus,price,andplannedfutureuseofdigitallifestorybookswereidentified.
Theinterventionsettinghadthemostsignificantinfluenceoncaregiverpreferences,totheextentthattheywerewillingtopayanadditional£41.45tohavetheinterventiontakeplaceone-to-oneintheirhomes,ratherthaninagroupsetting.Furthermore,theyweretwiceaslikelytopickaserviceinanindividualsettingthanthealternativegroupsetting.Similarly,amongparticipantswithdementia,theindividualsettingwasmorepopularthanthecommunitygroupsetting.However,itisimportantnottodisregardgroup-basedLSW,asalmostone-thirdofparticipantswithdementiaindicatedthattheywouldpreferthisovertheindividualoption.Inpreviousresearch,positiveoutcomesofdigitalLSWhavebeenidentifiedinbothindividualandgroupsettingsamongcommunity(Massimietal.,2008;Stenhouseetal.,2013),andcarehomeresidents(Damianakisetal.,2010;Ludwin&Capstick,2015;Subramaniam&Woods,2016).Similarly,qualitativeworkpresentedinChapter3highlightsthepositiveeffectsofbothgroupandindividualreminiscence,bothforparticipantswithdementiaandcaregivers.
Learninghowtousetheappwhilebeingsupportedtocreatetheirowndigitallifestorybookwasthemostpopularchoiceofsessionfocusamongparticipantswithdementia.However,onlythosewhoreportedhavingadvancedICTskillsselectedthisoption.Thosewithelementaryorintermediateskillschosethealternativeoption;todictatethecontentoftheirdigitallifestorybookandhavetheservicecreateitforthem.ThisissimilartoapreviousstudyofasupporteddigitalLSWinterventionwithpeoplewithdementia(Stenhouseetal,2013).TheyobservedthatparticipantsdidnotwanttointeractwithICTtocreatetheirdigitallifestorybook,andinstead,dictatedthecontentto
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theresearcherwhocreatedthedigitallifestorybookforthem.Similarly,inabehaviouralusageanalysisofareminiscenceapp,Mulvennaandcolleagues(2017)observedthatcaregiversactedas‘admins’andaddedreminiscencestimulitotheapp,whileparticipantswithdementiamostlyusedtheapptoreminisce.InChapter3,ICTwasasignificantbarrierforallparticipantswithdementia,andtheydependedontheircaregivertooperatetheirdigitallifestorybooks.Althoughsessionfocuswasnotasignificantattributeinthecaregiversample,advancedaccessibilityandusability(relativetobasic)ofthedigitallifestorybookappwasasignificantdriverincaregiverpreferences.Theanalysisshowedthatcaregiverswerewillingtopayanadditional£9.32toavoidadigitallifestorybookthatwasadvancedtouse.Similarly,inChapter3,allcaregivers(bothfamilyandcarestaff)struggledwiththemoreadvancedaspectsofthedigitallifestorybookappsuchasvideoandmusic,despitesomehavinggoodself-reportedICTskills.
Themajorityofparticipantswithdementiaselectedthe‘free’priceoption,but
whenthetwo‘paying’options(i.e.£25and£50)werecombined,itemergedthatmarginallymoreindicatedthattheywouldcontributetothecostsoftheLSWservice.Althoughpricewasasignificantdriverofcaregiverpreferenceswithalowerpricebeingpreferred,theoddsratioshowedthatthiswasmarginal.Toourknowledge,theattitudesofpeoplewithdementiaandcaregiverstowardspayingorcontributingtoLSWservicesarenotexploredelsewhereintheliterature.
Theleveloffollow-upsupportprovidedbytheLSWservicewasasignificantdriver
incaregiverpreferences,withafollow-upsessionandguidancemanualbeingpreferredtoamanualonly.Resultssuggestthatthefollow-upsessionwasvaluedatanadditional£7.75bycaregivers.Insomepreviousresearch,engagementwithdigitallifestorybookswanedovertimedespiteparticipantsseeingvalueinit(Damianakisetal.,2010;Chapter3;Chapter4).Althoughcaregiversinthecurrentstudydon’tappeartovalueadditionalfollow-upsessionsparticularlyhighly,theymaybehelpfultoironoutICTorotherissueswiththedigitallifestorybook,andperhapshavethepotentialtoprolongengagementwithit.
Whenparticipantswithdementiawereaskedhowtheywouldusetheirdigitallifestorybook,themostpopularresponsewas‘tolookatwithfamilyandfriendsandenjoysharedmemories’.Indeed,LSWtendstobeasharedactivityinwhichsharingmemoriesis
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associatedwithimprovedcommunication,identity,andunderstandingofthepersonwithdementia(Bruce&Schweitzer,2008;Gridley,2017).Forexample,Massimiandcolleagues(2008)foundthattheircasestudyparticipantenjoyedusinghisdigitallifestorybookwithfamilyandhadinvitedfriendstohishometoviewit.Hisrelativesdiscussedhowithelpedthemtoseehimasaperson,separatefromhisdiagnosis.Similarly,McKeownandcolleagues(2010),observedthatpeoplewithdementia(andcaregivers)tookgreatenjoymentandpridefrompeopletakinganinterestintheirlifestory.Theotherresponsesweresplitevenlybetweentheothertwooptions;toshownewpeoplesotheycanlearnabouttheperson;andtousealonetoenjoymemories.Eveninsuchasmallsample,thisdemonstratesthatpeoplewithdementiacanhaveverydifferentpreferencesofhowtheywouldwanttousedigitallifestorybook,whichshouldbeconsidered.Limitations
Aclearlimitationofthisstudyisthelackofcomparabilitybetweenresponsesintheonlinesurveyforparticipantswithdementia,andtheDCEforcaregivers.DCEsareassociatedwithahighcognitiveload,sothesurveyforpeoplewithdementiawassimplifiedtopreventthis.Thesampleofparticipantswithdementiaissmall,andtherecruitmentprocessmeansthatitisprobablynotrepresentativeofthewiderpopulationofpeoplelivingwithmildtomoderatedementiaandcaregivers.Althoughthecaregiversampleisareasonablesizeandexceedstheminimumrequirednumberofparticipants,sub-groupanalyseswerenotpossibleduetothedistributionofparticipantsacrosssub-groups.Onlyalimitednumberofattributescouldbeincluded,whichisageneraldrawbackofDCEsduetolimitationsintheamountofinformationpeoplecanprocess.
ImplicationsandFutureResearchTheresultsofthisexploratoryworkcanserveasapracticaltoolfordigitalLSWorganisationstouseincombinationwithotherresearchanduserconsultationtoplanservices.ResultsofferinsightintopreferencesofpeoplelivingwithdementiaandcaregiversinrelationtodigitalLSW,andprovidesomegroundworkformorein-depthandthoroughinvestigation.TheimportanceofconsideringuserICTskills,andtailoringtheinterventiontotheseskillsfromtheoutsetisclear.
MoreresearchwithlargersamplesizesisneededtoexploreaspectsofdigitalLSWservicesthatareimportanttopeoplewithdementiaandcaregivers.RelativelyfewDCEs
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havebeenconductedwithpeoplewithdementiaandcaregiversofpeoplewithdementia,andmoreworkisneededtovalidatethismethodwiththisgroup.Infutureresearch,ideally,bothpeoplewithdementiaandcaregiverswouldcompleteaDCEsurvey,sothatresultscanbecompared.CarryingoutashorterDCEinasupportedsettingwitharesearchercouldhelptoalleviatethecognitiveloadassociatedwiththismethod.AsthereisevidencetoshowthatdigitalLSWcanbevaluableincarehomesettings(e.g.Damianakisetal.,2010;Subramaniam&Woods,2016),preferencesamongcarehomeresidents,staff,andrelativesshouldalsobeexplored.Conclusion:
ThisexploratorystudyprovidesinitialinsightsintopreferencesofdigitalLSWservicesamongpeoplewithdementiaandcaregivers.Resultssuggestthatmost(butnotall)participantswithdementiapreferanindividualinterventionsetting,andwouldusetheirdigitallifestorybookstosharememorieswithfamilyandfriends.Marginallymoreparticipantswouldpayfortheservicethanuseitfreeofcharge,whileself-reportedICTskillsdictatedtheirpreferenceforthefocusoftheLSWsessions.Forcaregivers,theresultsoftheDCEshowthatanindividualinterventionsetting,alowprice,adigitallifestorybookthatisnotadvancedtouse,andanadditionalfollow-upsessionisthemostpreferred.
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Chapter6.Anevaluationandreviewoftouchscreenlifestoryworkappsforpeoplewith
dementia
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Summary
Theaimofthisstudywastoreviewandevaluatetouchscreenlifestoryworkappsthatareavailableforpeoplewithdementiaandtheircaregivers.Followingasystematicapproachtoidentificationandinclusion,nineappswereincludedinthereview.Appsaredescribedwithreferencetothetargetmarket,compatibility,cost,multimediacapacity,andthesign-up/sign-inprocess.AstudyauthorandanindependentevaluatorusedtheAppEvaluationTool(AET)toratetheaccessibilityofeachappforpeoplewithdementia.AETevaluationscoresrangedfrom44%(MemLifeJournal)to75%(Storiesetc).Performancewaspoorestonitemsrelatingtotextsize,colourcustomisability,gestureinstructions,accessiblehints,andfeedbackafteraddingitems(e.g.photographs,video,text).Threepeoplewithdementiaandfourcaregiversprovidedbriefreviewsoftheirexperiencesusingtheapps.Themostcommonconcernsrelatedtothedisplay(e.g.colour,textsize)oralackofclearinstructions.Theresultsofthisresearchhighlighttheexistenceofgood-qualityappsthatcanbeusedforthepurposesofLSWwithpeoplewithdementiaprivately,inresearch,orinpractice.Inaddition,resultscanhelptoinformappdevelopersonhowtheirappscouldbemademoreaccessibleandmoreappealingtothispopulation.TheworkpresentedinthischapterwillbesubmittedtoDementiaforconsiderationforpublicationinthecomingweek.
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Introduction
Touchscreenappsarebecomingincreasinglyavailable,affordable,andaccessible.Stimulatingdaytimeactivitiesareoneofthemostfrequentlyreportedunmetneedsamongpeoplewithdementia,potentiallyaddingtothedifficultiesfacedbycaregiversastheytrytocombatthiswithlimitedtimeandresources(Blacketal.,2013;Cohen-Mansfield,Dakheel-Ali,Marx,Thein,&Regier,2015;NICE-SCIE2007).Althoughthemajorityofresearchintousingtouchscreenswithpeoplewithdementiahasrevolvedaroundassessmentorcognitiverehabilitation,thereisnowgrowinginterestinhowtouchscreensmightbeusedforleisureorenjoyment(Joddrell&Astell,2016).
Thebenefitsofusingtouchscreenswithpeoplewithdementiawereidentifiedinitiallyin1986byCarr,WoodsandMoore.However,thereremainedapervasiveassumptionthatpeoplewithdementia,andolderpeopleingeneral,couldnotlearnhowtousetouchscreendevicesbutthishassincebeeninvalidatedbymoreresearch(French2016;Lim,Wallace,Luszcz,&Reynolds,2013;Wandke,Sengpiel,&Sönksen,2012).Infact,touchscreenshavemadecomputingmoreaccessibleforpeoplewithdementiaastheyremovethelevelofhand-eyecoordinationneededtooperateamouseandmonitorisnotrequired(French,2016;Wandkeetal.,2012).Thereisnowevidencethatsomepeoplewithdementiacanoperatetouchscreensindependently(Astelletal.,2016;French,2016;Kerkhof,Bergsma,Graff,&Dröes,2017;Limetal.,2013).Forexample,Kerkhofandcolleagues(2017)observedthatsomeparticipantswithdementiacouldoperatetouchscreenappsindependentlyaftertheyhadbecomefamiliarwiththem.Insomeresearchoftouchscreengames,ithasbeenfoundthatpeoplewithdementiacaninteractwithtabletsandgames,eveniftheyhadnotusedonebefore.However,therewerealsoseveralpeoplewithdementiawhoneededsupporttooperatetouchscreens,andtherequiredlevelofsupportvariedconsiderablyfrompersontoperson(Astelletal.,2016;French,2016;Kerkhofetal.,2017;Limetal.,2013).
TyackandCamic(2017)reviewedtouchscreeninterventionstudiesforpeoplewithdementiaandconcludedthattouchscreenappscouldbeconsideredasafeasiblewayofsupportingwellbeingforthisgroup.Similarly,French(2016)highlightedthesuccessofathree-yearNHS-fundeddigitalinclusionprogramme,inwhichpeopleatallstagesofdementiainteractedinamostlypositivewaywithtouchscreendevicesandapps.This
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projectandotherrecentresearchhasalsohighlightedthattouchscreenappscanserveasanenjoyableactivityforpeoplewithdementia,eveniftheyhavenotbeennecessarilydevelopedwithpeoplewithdementiainmind(e.g.Astelletal.,2016;Groenewoudetal.,2017;Kerkhofetal.,2017).Forexample,Astellandcolleagues(2016)foundthatparticipantswithdementiaenjoyedplaying‘Solitaire’and‘BubbleExplode’,bothofwhichhadbeendevelopedforthegeneralpublicratherthanpeoplewithdementiaspecifically.
Thereisgrowinginterestinusingtouchscreenappsforthepurposesoflifestorywork(LSW)withpeoplewithdementia.InAugust2016,theUKGovernmentprocuredtheDementiaCitizensinitiative3,inwhichadigitalLSWappwasoneoftwotouchscreenappslaunchedUK-wideforpeoplelivingwithdementiaandtheircaregivers.Thiswasacostlyinitiativeinwhichtwoappswerepurpose-builtspecificallyforpeoplewithdementiaandtheircaregivers.MoreinformationaboutthisinitiativeandaccompanyingdigitalLSWappispresentedinChapter4.LSWisconsideredameaningfulpsychosocialinterventionforpeoplelivingwithdementia,inwhichtheydiscussimportantpartsoftheirlifewithanotherpersonandhavetheserecordedinsomeway(Kitwood,1997;McKinney,2017;McKeownetal.,2006;Murphy,2000).DigitalLSWusuallyinvolvestheproductionofadigital‘book’usingvariousmultimediastimulisuchasphoto,video,andaudio.TheevidencebasefordigitalLSWisstillbeingestablished,butthereissomepromisingevidencerelatingtoenjoyment,well-being,andcommunication(e.g.Subramaniam&Woods,2016;Damianakisetal.,2009;Ludwin&Capstick,2015).Inarecentcasestudyofatouchscreenappandlifestoriesforpeoplewithdementia,CrittenandKucirkova(2017)foundthatallthreeparticipants(andtheircaregivers)enjoyedtheinterventionandexperiencedfeelingsofconfidence,empowerment,andincreasedself-esteem.Thisisoneoftheonlypublishedstudiesoftouchscreen-baseddigitalLSWforpeoplewithdementiatodate.InChapter4however,nosignificantbenefitofusingthepurpose-builtLSWtouchscreenappwasidentified,andwhilesomeparticipantsenjoyedusingit,mostdidnotengagewithit.
Inonestudy,Kerkhofandcolleagues(2017)foundthattwocaregiversfeltthatthe
levelofsupportneededbytheirrelativewithdementiatooperatethetouchscreendeviceactuallyaddedtothedemandsofcaregiving.Similarly,Groenewoudandcolleagues(2017)
3www.dementiacitizens.org
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foundthatinadditiontoprovidingenjoymentandimprovedself-confidence,usingappscouldalsocauseannoyanceandasenseofinsecuritytouserswithdementiawhostruggledtooperatethem.Thesefindingshighlightedtheimportanceofprovidingappsthatareaccessibletopeoplewithdementia,andofchoosingtherightappsfortherightperson.ThisthenpromptedtheestablishmentoftheAcToDementiaproject4,whichaimstoidentifyaccessibletouchscreenappsforpeoplelivingwithdementiaandprovideevidence-basedrecommendationsofthem(Joddrelletal.,2016).ThisprojectincludedthedevelopmentoftheAppEvaluationTool(AET,Joddrelletal.,2016),whichisusedtoevaluatetheaccessibilityoftouchscreenappsforpeoplelivingwithdementia.Inthiscontext,accessibilityreferstothedesignofappsforpeoplewhoexperiencecognitiveorphysicaldifficulties,suchaspeoplelivingwithdementia.
Intandemwithgrowinginterestandincreasedtouchscreenaccessibility,moreLSWappsarepopulatingonlineappstoresandrepositories.Severalaremarketedtocaregiversofpeoplewithdementiaorpeoplewithdementiathemselves.Thesearewelcomedevelopments,butitiscrucialtoidentifyappsthatareofgoodqualityandaccessibletopeoplewithdementiaandtheircaregivers,toavoidfrustrationandwastedtime.Furthermore,itwouldbehelpfultocapitaliseonpre-existingtouchscreenappsforresearchorpractice.Therefore,theaimsofthisstudyare:
1) Todocumentanddescribetouchscreenlifestoryworkappsthatarecurrentlyavailabletopeoplewithdementiaandtheircaregivers
2) Toevaluatetheaccessibilityoftheseappsforpeoplewithdementia3) Toprovideuserreviewsoftheapps,writtenbypeoplewithdementiaandtheir
caregivers.
4www.actodementia.com
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Methods
SearchMethods&Procedure
OurcharacterisationofLSWwasbasedonthoseofMurphy(2000)andMcKeownandcolleagues(2006),whosuggestthatitinvolvesthinkingaboutordiscussingimportantpartsofone’slife,andrecordingtheseinsomeway.Thisrecordisthenusedtobenefitthepersoninthepresent.Toidentifypotentialapps,tworesearchersworkedindependentlytocarryoutsearchesoftheAppleAppStore,iTunes,andtheGooglePlayStoreusingcombinationsofthekeywords:dementia;Alzheimer's;reminiscence;lifestory;lifehistory;lifestorybook;biography.Aweb-basedsearchofappsusingtheGoogleAdvancedSearchenginewasalsoperformed.Searcheswerecarriedoutbetween20/1/2017and20/2/2017.
Thefollowinginclusionandexclusioncriteriaapplied:
1) Ithadtobepossibletodownloadtheapponatouchscreendevice,suchasatabletcomputerorsmartphone
2) Creatingalifestorybookorlifestoryrecordhadtobetheprimarypurpose,oroneoftheprimarypurposes,oftheapp
3) Appshadtobetargetedtowardsadults,andnothaveajuvenileorchildishtheme4) Appsmusthavebeenavailabletothegeneralconsumer,andnotsolelyfortheuse
ofcareorganisations5) AppsmusthavebeenavailabletodownloadintheUKandIreland
Eachsearchwithineachappstoreproduceshundredsofthousandsofsuggestionsthatchangefromdaytodayasmoreappsareaddedtotherepositories.Therefore,appswereconsidereduntiltherewereover20appsinarowthatbarednorelevancetodementia,reminiscenceorLSW.Todetermineiftheappsmettheabovecriteria,theappnames,images,anddescriptionswerescreened.Wherenecessary,appsweredownloadedandexploredfurthertodetermineifthecriteriaweremet.Followingindependentevaluation,thetwosearchauthorshadafollow-upmeetingtocomparetheirresultsandfinalisealistofappsforinclusioninthereview.
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Appdescriptionsandratings
Eachincludedappwasdownloadedontoatabletcomputer.Theresearcherusedeachappforapproximately20-30minutesandrecordedbasicinformationabouteachone.AppswerethenratedusingamodifiedversionoftheAET(Joddrelletal.,2016).TheAETisa42-itemtooldesignedtoevaluateandassessthesuitabilityandaccessibilityoftouchscreenappsforpeoplelivingwithdementia.Itcoverssevencategoriesincludinginteraction,feedback,aestheticdesign,appdesign,customisation,obstacles,ageappropriateness.Thereisalsoanadditionalcategoryforevaluationsspecifictotouchscreengames.ItemsthatwerenotrelevanttoLSWapps(n=18)wereremovedbeforetheevaluation.Asnotallitemswererelevanttoeachapp,percentagescoreswerecalculated(forexample,itemsrelatingtovolumecontrolwouldnotbeapplicableiftheappdidnothavesound).AppswereratedbytheresearcherandadeveloperoftheAET.Therewasfairinter-rateragreementontheAETevaluations,accordingtoLandisandKoch’s(1977)ruleofthumb(Kappa=0.33,P<0.05).Theaverageratingswerepresented,thoughinthreecasesthesecondrater(AETdeveloper)couldnotcarryouttherating,sotheavailableratingwaspresented(i.e.MemBook,Storiesetc,GreyMatters).
Appreviews
Peoplewithdementiaandcaregiversofpeoplewithdementiawererecruitedas‘appreviewers’.Tobeeligibletotakepart,appreviewersneededtohavethementalcapacitytoconsenttotakepartintheresearchandbelivingwithdementia,orcaringforsomebodywithdementia.ThiswasjudgedfollowingguidancefromtheMentalCapacityAct(DepartmentofHealth,2005).
TheresearchercontactedtheIrishDementiaWorkingGroup(IDWG)anddistributedinformationsheets(AppendixN)tomemberswithdementiaatoneoftheirbi-monthlymeetings.TheIDWGisanationaldementiaadvocacygroupbasedinIreland,madeupofpeoplewithdementiaandtheircaregivers.Thosewhoagreedtotakepartattendedagroupmeetingwiththeresearcher.ThegroupmeetingtookplaceinalargeroominthesamelocationthattheIDWGmeetingtookplace,andreviewerscouldcarryoutthereviewsinaquietcornerorwithanotherperson.Aftersigningtheconsentform,thefourreviewerswererandomlyassignedanapptoreview.Thiswasdonebyusinganonlinerandomnumbergenerator.OnlyappsthathadanAETevaluationof60%ormore
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wereassignedtoreviewerswithdementia.Reviewerswereaskedtousetheappforbetween15and20minutes,andthenwriteordictateabriefreviewoftheapp.Iftheywished,theycouldthenreviewasecondapp.Theresearcherwaspresentincaseanyreviewerrequiredsomeassistance.
Theresearchwasalsopublicisedonsocialmedia.Informationsheets(AppendixN)weresenttothosewhoexpressedinterestintakingpartbye-mail.Theresearcherthenphonedthosewhorespondedtothee-mailtoexplainthestudy,andtogivepotentialreviewerstheopportunitytoaskquestions.Aninformationsheetandconsentformwerealsopostedtotheparticipantswithastampedaddressedenvelopetoreturntheconsentform.Followingconfirmationofconsent,reviewerswere‘assigned’anapptoreview.Thiswasdoneusingarandomnumbergenerator,thoughifanapphadpreviouslybeenreviewed,itwasnotincluded.Theresearcherexplainedhowtodownloadtheapps,andiftheapphadtobepaidfor,gavethemacodetodownloaditforfree.Reviewerswereaskedtousetheappsforbetween15and20minutes,andwriteareviewoftheirexperiences.Allreviewerswerealsogiventheoptionofsendingthereviewviae-mail,post,ordictatingitoverthephone.Allreviewersoptedtosendtheirreviewsviae-mail.
Allreviewerswereprovidedwithalistofpromptstoassistwiththereview,butitwasstressedthatthesewereoptional(AppendixO).Reviewerswereeachposteda£10storevoucherfortakingpart.
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Results
Apprepositoriesweresearched,andthetitles,thumbnails,and/ordescriptionsof56appswerereviewedforinclusion.TenappsmettheinclusioncriteriaandaredescribedinTable6.1.SomeexcludedappsandreasonsforexclusionarepresentedinAppendixQ.Targetmarket.Appsweremostlytargetedtowardsgeneralconsumers(Storiesetc,weGather,MemLifeJournal),olderpeopleandtheircaregivers(MindMate,LifeBioStudio,TangibleMemories,Storii),andpeoplewithdementiaandtheircaregivers(MemBook,MyLifeStory).Oneappwastargetedspecificallyatcaregiversofpeoplewithdementia(‘Greymatters’).Compatibility:FiveoftheincludedappswereonlycompatiblewithAppleIoSdevices,withthreebeingavailableforiPadonly.FourwerecompatiblewithbothAppleandAndroiddevices,whileonewasavailableforAndroiddevicesonly.Cost:Allappswerefreetodownloadexceptfor‘MyLifeStory’whichcost£6.99forthefirsttwoalbums,andafurther£39.99forunlimitedalbumsthereafter.The‘GreyMatters’appofferedin-apppurchases,mostlyrelatingtoadditionalreminiscencepackagesthatwerenotrelevanttothedigitallifestorybookfunction.However,therewasalsoanoptiontopurchaseadditionalprofiles($19.99).Noneoftheotherincludedappscontainedin-apppurchases.‘MemLifeJournal’providesuserswiththeoptionofconvertingtheirdigitallifestorybooktoaPDFandpayingtoitprintedandboundwithanaffiliatepartner.Multimediacomponents:Multimediacomponentsincludedphoto,text,audionarration,video,andmusic.Almostallappsfacilitatedphotographsandtext,andfivealsofacilitatedaudionarration.‘GreyMatters’and‘Storii’facilitatedtheinclusionofallfivemultimediacomponents.Sign-upprocess:Severalincludedappshadsomekindofsignupprocesswherebytheuserenteredtheirname,e-mailaddress,andcreatedapassword.Inmostapps,thesedetailsweresavedsothatusersdidnothavetorepeatthesign-inprocesseachtimetheyusedtheapp.However,the‘Storii’andweGatherappsrequiredausernameandpasswordeachtimetheywereopened,withnooptionofhavingthesignincredentialssaved.The
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Table6.1.Descriptionofincludedapps
AppNameCompatibilit
y Price Description
Photo
Text
Narration
Video
Music
AverageAET%
Storiesetc iOS Free
Userscanrecordtheirrecordtheirstorybyvideo,voice,ortext.Therearealsopromptingquestionsifdesired.Individualstoriescanbegroupedintothemes,anduserscane-mailthestorytofriendsorfamily.Itisaimedatgeneralconsumers.
� � � � 75%
MindMate iOS/Android FreeLSWisoneof4mainfunctionalitiesoftheapp.Userscanbuildalifestorybook.Theappisaimedatolderpeopleingeneral,thoughitdoesmentiondementiaonthewebsiteandintheappstoredescription.
� � 70%
LifeBioStudio
iOS Free
Thisappcontainsseveralpromptsandquestions.Userscanvideorecordthemselvesrespondingtothesequestions.Notypingisrequiredaftertheinitiallogin.Thisappisaimedatolderpeopleingeneralandthosewhocareforolderpeople.
� � � 64%
weGather iOS/Android FreeUserscanaddlifememoriesandconnectwithfamilymemberswhocancommentandcollaborateonphotographsandtext.Itisaimedatgeneralconsumers.
� � 63%
GreyMatters iPadonly Free
Userscanbuildalifestorybookandhavetheoptionofrecording‘reminder’videos.Theappcontainsgamesandreminiscencetools,butitispredominantlyadigitallifestorybook.Itisaimedatcaregiversofpeoplewithdementia.
� � � � � 61%
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AppNameCompatibilit
yPrice Description
Photo
Text
Narration
Video
Music
AverageAET%
MemBook Androidonly Free
Userscancreateseveraldigital‘scrapbooks’oftheirlifestoryonabook-liketemplate.However,thisappdoesnotappeartobemaintained,andauthorscouldnotgetintouchwithdevelopers.Itisdesignedforpeoplelivingwithdementiaandtheircaregivers.
� � 59%
Storii IoS/Android Free
Userscancreatetheirlifestory,andusetheapptoconnectwithotherswhoalsohaveStorii.Theycanthensharetheircontentwiththeirconnections.Itisnotspecificallyaimedatpeoplewithdementiaorcaregiversbutmentionsdementiaonthewebsiteandintheappstoredescription.
� � � � � 56%
TangibleMemories:StoryCreator
iPadOnly Free
Userscanrecordtheirdigitallifestorywhichcanbeviewedasaslideshoworprintedout.Printoutscanbescannedbytheappwhichwillthenplayanysoundrecordingsassociatedwiththatpage.Ithasbeendesigned‘particularlyforolderpeopleandtheircarers'
� � � � 54%
MyLifeStory iPadOnly £7.99Allowsuserstocreateslideshowsoftheirlifestory,usingdifferentalbums.Thisappisspecificallydesignedforpeoplelivingwithdementiaandtheircaregivers.Italsocontainsin-apppurchases.
� � � � 50%
MemLifeJournal
iOS/Android Free
Userscanbuildatimelineofmemoriesusingpromptsifdesired.Thereisanoptiontocollaboratewithotherswhilemaintainingcontrolofsharingandediting.Itappearstobetargetedatgeneralconsumers,thoughitmentionsAlzheimer'sDiseaseinthedescription.
� � 44%
150
appsthatweredevelopedwithpeoplewithdementiainmind(e.g.MemBook,MyLife
Story),hadnosign-uporsign-inprocess,souserscouldbeginusingtheappsimmediately
afterdownloadingthem.The‘GreyMatters'apprequiredthatane-mailaccountislinkedto
theusers’iPad,andusershadtosignuptotheGreyMattersmailinglist.Followingthe
initialsignup,usersdidnothavetosigninagain
AETEvaluations.AETevaluationsalsoarepresentedinTable6.1.AverageAETscores
rangefrom44%to75%.Storiesetc(75%),‘MindMate’(70%),andLifeBioStudio(64%)
wereawardedthehighestratings.Acrossapps,therewasrelativelypoorperformanceon
itemsrelatedtotextsize,colourcustomisability,gestureinstructions(suchasswiping,
zooming),accessiblehints,andfeedbackwhenitemswereadded.
Appreviews
InformationregardingrecruitmentispresentedinTable6.2.Ninepeoplewithdementia
(membersoftheIDWG)wereinformedabouttheresearch,andfouragreedtotakepart.
Sevenfamilycaregiversrespondedtothestudyinformationonsocialmediaand
distributedthroughtheNorthWalesDementiaNetwork.Ofthese,fourfamilycaregivers
agreedtobeanappreviewerandconsentedtotakepartinthestudy.
Table6.2.Appreviewerrecruitmenttable
Action N
Peoplewithdementia
Approachedtobeanappreviewer 9
Participatedasanappreviewer 4
Familycaregivers
Expressedinterestinbeinganappreviewer 7
Participatedasanappreviewer 4
151
App.MyLifeStory
Reviewers.KathyandAnne(MembersoftheIDWG)
"Theappseemsstraightforwardtouseatthebeginning,butsomepartsarenotclear.
Italwaysneedstobeclearwhatthenextstepornextbuttontopressistoavoid
gettingfrustrated.It'sbrilliantthatyoucanspeakaboutyourphotos.Ihavebeen
lookingforsomethinglikethisforalongtime.Wefeelverystronglythatthereshould
beafreetrial.It'sverygood,butIwouldnotbuythiswithouttryingitoutfirst.
Unlimitedalbumsseemveryexpensivesincetherearesomanyfreeappsavailable".
App.Storiesetc
Reviewers.Dolores(MemberoftheIDWG)
"It'sclearwhattodointheapp,andit'seasytouse,butitdoesn'ttellyouhowtosave
pages.Everythingiseasytoread,andthecoloursareveryclear.Thetextisbig.I
wouldtryitwithsomebodybutnotonmyown.I'mnotverygoodwithcomputers,I
neverhavebeen,soIwouldn'tfeelconfidentdoingitonmyown.Ifoundthattheapp
frozequitealot.Thereweretoomanyoptionstosavethings.Iwouldrecommendthis
toafriend”.
Authornote:Theappdidnotcrashduringothertestingperiodssoitmayhave
beenduetothedevicethatwasbeingusedatthetime.
App.weGather
Reviewer.Dolores(MemberoftheIDWG)
"Itisclearwhatyouhavetodoontheapp,andit'seasytouse.Ilikethatyoucanask
yourfamilytobepartofitwithyouandsharememories,butthewritingissmalland
notveryclear.Itwouldbegoodifthepictureswerelarger.Iwouldlikemoreoptions
onitlikespeaking".
App.MindMate
Reviewers.KathyandAnne(MembersoftheIDWG)
"ThisisanappIwouldpayfor.Itisveryclear,youhaveallthebuttonsonthescreen,
152
andittellsyouthedateandtimeonthetop.Itmakesyoufeellikeyou'reincontrol.
Thepromptsareexcellent,andit'sclearwhatthenextstepis.Theonlypartthatisn't
completelyclearisaddingaphoto.Weweren'tsurehowtoconfirmthatwepicked
photosorthatwehadtogointothealbumfirst.Welovedtheappbutit'sapityyou
can'tputvoiceonittoo,wewouldreallylovethat.Wewouldrecommendthisto
friends".
App.weGather
Reviewer.Suzy(withthehelpofherMum,whoislivingwithdementia)
“weGatherisreallyeasytouse,andtheinstructionsarestraightforward.Wehada
fewdifficultiessigningin,butthiswasresolvedafterresettingthepasswordtwice.
Onefrustrationwasthatweneededtosigninwithanemailandpasswordeverytime
weopenedtheapp,theredidn'tseemtobeawaytosavethesedetailsandultimately
savetime!WefoundtheAppalittleboring;thefeaturedphotographscouldhavebeen
morevariedwithsomephotosofthepresentday.Wewonderediftherewasan
assumptionthatolderpeople/peoplelivingwithdementiajustlikelookingatold
photos,notrecentmemories?Wealsowonderedifsomeanimationsorbrighter
colourswouldappealtotheintergenerationalmarket.Welikedtheoptionofsharing
photos/memoriesandaskingfamily/friendstocontribute-thiswasalovelyidea
howeveryouwouldneedtorelyonfamily/friendstohaveaniPhoneandcommitment
todownloadtheApp.WewouldnotrecommendthisApptofriends".
App.LifeBioStudio
Reviewer.Penny(withthehelpofherMum,whoislivingwithdementia)
“Itdivesstraightinwithrecording.Itwouldhavebeennicetohaveapageof
explanationfirst,tounderstandwhatwewereabouttodo,maybeshowanexampleof
someoneelsedoingit.Inretrospect,weshouldhavepositionedthecamerabetter,so
thefinishedresultlooksgood,ratherthanawobbly,handheld,selfiestylerecording.
Clearerinstructionsatthestartwouldhavehelped.Mymumisintheearly/mid
stagesofdementiaandhasneverreallyusedacomputer.Shewouldhavehadnoidea
howtouseitwithouthelp.Someoneusedtotechnologymayhavemanagedbut
consideringitmaywellbeusedbypeoplewithcognitiveissues,itwouldhavebeen
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bettertohavemoreinformation(andsimplified)onhowtogetstarted.Thecolours
areabitdullanddonotdrawyouin.Itwouldhavebeengoodtoincorporateclear,
strongcoloursthatstandout.Itwasagoodactivitytodotogether.Mymumisagreat
talkerandofcourse,lovestalkingaboutherpastagreatdeal,soshereallyenjoyed
doingit.Therewasnotimelimitontherecordingwhichmeantshecouldtalkforas
longasshewanted.Itwasgoodtohavethequestionstopromptaresponse.Itwas
helpfultoseethoseonthescreenasyourecordtohelpmumremember.Itisnotavery
attractiveapp,thelayoutisnotveryinviting,andit'snotclearwhatallthemenu
optionswerefor.Ithinkthecolourschemeneedstobeimproved,andthedevelopers
shouldaddaclearerexplanationofwhatyouareabouttodoatthestart.Itisquite
time-consuming,sotoknowthatyoucancomebacktoitanothertimebeforeyou
beginandnotloseyourrecordingswouldbehelpful.Frommyexperience,itcould
onlybeusedbysomeonewithdementiawithhelp.Iwouldpossiblyrecommendthisto
afriend,butIamnotsureitisanydifferentfromrecordingityourselfonyour
iPhone".
App.TangibleMemories:StoryCreator
Reviewer.Penny(withthehelpofherMum,whoislivingwithdementia)
"Resources'tellsyouwhattodo,butperhapsitshouldberenamed‘Howtocreate
yourstory',whichisabitmoreobvious.Otherwise,youfindyourselfwonderinghowit
worksandgoingtoFAQs.FAQsarehelpfulbutverydetailedandperhapsabit
overwhelming!Iliketheideaofcombiningaudiowithtextandaphoto.Alsoforsome
olderpeople,itmightbeeasiertocaptureaudiothanfilmthem.Itiseasytouseifyou
aregoodatusinganiPad,butitisfairlystraightforwardtoworkoutonceyougetto
the‘createproject'stage,evenifyou'renotverygoodattechnology.Thehomepageis
simpleandinviting.Theotherpages,e.g.about,faqs,resources,lookabitclinical.I’m
suretheycouldbelaidoutbetter,whichwouldmeanyou’dbemorelikelytoread
them.Itwasagoodactivitytodotogether,fairlyeasytouse.Ilikethatyoucanstop
andstartyourproject,soitdoesnotneedtobecreatedallatonce,andthatyoucan
createmorethanoneprojectatatime.Itisaneasywaytoaccessphotos,memories,
andaudioinoneplace.Itcanbeusedinmanyways,forexampleasadistraction,to
promptconversationortoconnectwithvisitors/carers.Ittakesabitmoreplanning
asyouneedtohavephotosinmindandstoriesyouthinkwouldbegoodtotell.
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Perhapsalistofpromptquestionsmighthelp.IfIhadtochangesomething,itwould
bethelayoutofmenupages.Iwouldusethisappwithsomebodywithdementia".
App.Storii
Reviewer.Colleen,acaregiverforapersonlivingwithdementia
“Thesummarysoundsverypromising–particularlytheideaofsharingthecontents
withotherpartieswhocanaddandedit.Inactuality,Ifoundtheappsounfathomable
anduser-unfriendlythatIgaveup!Asdidmypartner,whoisverytechsavvy.There
wasnointroductionorexplanation,andIcan'timaginethemajorityofcarers(never
mindpeoplewithdementiathemselves)havingthefirstideawheretostart.I'mnota
greatfan,personally,ofdeliberatelymisspeltwordseither(e.g.kidz,storii)andmuch
preferredthesimplicityandself-explanatorytitlesofMemlifeandMemBook.Theydo
whattheysayonthetin,which‘Storii’mostcertainlydoesnot”.
App.MemlifeJournal
Reviewer.Colleen,acaregiverforapersonlivingwithdementia
“Thisisasmallerapp,therebyusinguplessstorageonone’sphoneand–hurrah–it
linkstoone’scomputer,soalltheinfoisthereaswellwhereitis,ofcourse,much
easiertoseeandtouse.Amajorplus.Iknownotallpatientsorcarersareelderlybut
agreatmanyareandsmall,fiddlythingsareachallengeandfrustratingforthemto
use.Iseetheappisfunded,therebylosingsomescreenspacetoadvertising,butthatis
anobservationratherthanacriticism.Ididn’tspendverylongintheappasIwas
keentotrythenextone,butitseemedcomprehensiveandeasytouse.Ilikedit.One
criticism:youcan’tclosedowntheappfromwithinitonaphone–evenafterlogging
outIstillhadtogotoCloseAllAppstoescape.Finally,itwasnicetogeta“welcome”
emailfromMemlife.Toucheslikethathaveapositivepsychologicaleffect,Ithink.The
I.Tworldcanseemacoldandimpersonalone,particularlytotheoldergeneration;
anythingfriendlyandsupportiveishelpful”.
App.Membook
Reviewer.Colleen,acaregiverforapersonlivingwithdementia
155
“Thiswasquiteappealing,simpleandstraightforward.Itisverylimited(particularly
incomparisonwithMemlife),butIlikedtheideaandcouldimaginesittingwithmy
mumandherbeingquiteengagedforashortwhile(shehasverylimited
concentration),particularlyasthealbumcoversarebrightandcolourful”.
App.GreyMatters
Reviewer.Mick,acaregiverforapersonlivingwithdementia
“Alittledifficulttodownload.Thereisalsosomeworktobedonelikeaddingemail
address(userandcarer)beforeyoucanreallystartandthismaycauseconfusion.
Onceitisupandrunning,itisfairlyeasytouse.Tobenefitfromit,youreallyneedto
dosomeworkinaddingpictures,musicetc.Toavailofmoreprofiles,youneedto
purchasevariousitemsfromtheappstorewhichofcourseismoreexpenseandwork.
Thelayoutcoloursarenice,andtheinterfaceisclearanduser-friendly.Thehelp
sectionisquitegoodandhassomepositive,simpleadviceonhowtoengagewiththe
user.Oncesetup,theappisquitegoodandmaybeofsomebenefitinafamilysetting.
156
Discussion
TheaimofthisresearchwastoreviewandevaluatetouchscreenLSWappsthatare
availabletopeoplewithdementiaandtheircaregivers.Thiswasdonewiththeviewto
providingpracticaladviceandrecommendationstoprospectiveusers,andhighlighting
possibleimprovementsthatcouldmaketheappsmoreaccessibletopeoplewith
dementia.Briefreviewsofeachappwerecarriedoutbypeoplewithdementiaor
caregiversofpeoplewithdementia,whilearesearcherandindependentreviewer
evaluatedtheaccessibilityofeachappusingtheAET.
WhenappswererankedaccordingtotheiraverageAETevaluationscore‘Stories
etc’,‘MindMate’,‘LifeBioStudio’,and‘weGather’wereratedasthemostaccessiblefor
peoplewithdementia.‘MindMate’and‘LifeBioStudio’aremarketedtoolderpeople,while
‘Storiesetc’wasdevelopedforthegeneralconsumer.Inaddition,havinghighAETscores,
reviewsoftheseappswerepredominantlypositive.Inparticular,the‘MindMate’reviewer
statedthatitwasanappshewouldpayfor(itiscurrentlyfreetodownload).Inprevious
researchoftouchscreenappsanddementia,ithasbeenfoundthatappscanbeasourceof
pleasureandenjoyment,eveniftheyarenotspecificallymarketedto,ordevelopedfor,
peoplewithdementiaorevenolderpeopleingeneral(Astelletal.,2016;French,2016;
Kerkhofetal.,2017).Although‘LifeBioStudio’wasrankedasthethirdmostaccessibleapp
usingtheAET,thereviewerfeltthatitlackedbasicinstructions,andneededbrighterand
boldercolours.Infact,anabsenceofclearinstructions,andissuesrelatedtocolour,layout,
andtextsizewerecommonconcernsamongreviewers.Thisbearssimilaritytofindings
fromarecentstudy,inwhichfocusgroupdatarevealedthatpeoplewithdementiaand
theircaregivershadissueswiththesmallsizeofappelements,thelackofaclear‘home’
button,andunrecognisablesymbolsonbuttons.Itwasfoundthatparticipantsdesired
morecustomisabilityinrelationtotheinterface,lessscrolling,fewerscreens,andfewer
requiredclicks(Kerkhofetal.,2017).Inthecurrentstudy,AETratingsrelatingtothe
customisabilityoftextsizeandcolours,feedbackwhenanelementwasadded,and
assumptionofpriorknowledgeofgesturecontrolssuchasswipingandzooming,werethe
poorest.
Someoftheabovedesignissuesmayhaverelativelysimpleresolutionsthrough
addedorsimplifiedinstructions,improvedcolourschemes,andmorechoiceabout
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interfaceappearance(e.g.changingtextsize).Inastudyofappsforpeoplewithdementia,
Astellandcolleagues(2016)identifiedsomedesignissuesintwotouchscreengames.
Later,JoddrellandAstell(2017)demonstratedhowoneoftheseapps(‘Solitaire’),was
mademoreaccessiblethroughcollaborationbetweenresearchers,appusers(i.e.people
withdementia)andappdevelopers.Participantswhousedtheamendedappmadefewer
errorsandprogressedfurtherthroughthegamecomparedtothosewhousedtheoriginal
version.However,performanceontheamendedversionofothergame(‘BubbleExplode’)
wassimilartotheoriginalversion,suggestingthattheremaybeaceilingeffect.
Inthecurrentevaluation,reviewerswithdementiahadmixedfeelingsaboutusing
theappsindependentlyduringtesting.Doloresmentionedthatshewouldonlyusetheapp
withanotherperson,whileseveralcaregiverreviewersfeltitwasunlikelythattheir
relativewithdementiawouldbeabletousetheappsindependently.Ontheotherhand,
thiswasnotaconcernforKathyandAnne,bothofwhomarelivingwithdementia.These
observationsaresimilartopreviousstudiesoftouchscreenappsforpeoplewithdementia,
inwhichsomeparticipantscouldoperatethemindependentlywhileothersrequired
varyinglevelsofsupport(Astelletal.,2016;French,2016;Kerkhofetal.,2017;Limetal.,
2013).CrittenandKucirkova(2017)foundthatallthreeparticipantsintheirstudyneeded
somesupporttouseatouchscreenLSWapp.Theappinquestionwasdesignedfor
childrenandisthereforenotincludedinthecurrentstudy.InChapter4,qualitative
feedbackindicatedthatatouchscreenLSWappwasmanageableforsomeparticipants
withdementiaontheirown,butothersfeltthattherewasaninformationoverloadand
foundittoodifficulttouse.
Limitations
Newappsareconstantlybeingaddedtoapprepositoriesmeaningthatneweligibleapps
maybeavailablethatarenotincludedinthecurrentreview.Similarly,asappsare
frequentlyupdated,itispossiblethatslightlydifferentversionsweresubjecttoreviews
andevaluations.AlthoughtheAETwasdesignedtobeusedwithalltypesofapps,sofar,it
hasonlybeenusedwithgamingapps.Consequently,theevolutionofthetooltodatehas
beenbasedondiscoverieswithingamingapps.ThisisthefirsttimetheAEThasbeenused
withnon-gamingapps,anditmayrequiremodificationsoradditionsfortheevaluationof
LSWapps.Forexample,itemsrelatingtothesign-upandsign-inprocessmaybeuseful.
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ImplicationsandFutureResearch
Theresultsofthisreviewofferabasistoprovidepracticalguidanceandrecommendations
topeoplewithdementiaorcaregiverswhomaybeinterestinginusingatouchscreenapp
forLSW.Resultswillbeconvertedtoplainlanguageandpublishedasablogpostonthe
AcToDementiawebsite.Resultswillalsobecommunicatedtodevelopersoftheincluded
apps,inthehopethattheycanmaketheappsmoreaccessibleanduser-friendlywhere
needed.Forresearch,resultshighlighttheexistenceoffreelyavailable,good-qualityapps
thatcanbeusedforthepurposesofLSWwithpeoplewithdementiaandtheircaregivers.
Futureresearchshouldinvolvelongertestingperiodsandhaveseveralreviewsofeach
appbyreviewerswithvariedICTexperienceandskills.Ideally,apersonwithdementia
shouldalwaysbeinvolvedinthereviewprocess.Wherepossible,researchersshouldwork
withappdevelopersandappuserstoaddressdesignissuesandexploretherelative
benefitsofdoingso.
Conclusion
Thereexistssomefreelyavailable,goodquality,touchscreenLSWappsthatcanbe
consideredforuseinpracticeandresearchwithpeoplewithdementiaandcaregivers.
Thereareareasinwhichaccessibilitycanbeimproved(e.g.textsize,customisability,
instructions)throughcollaborationandcommunicationwithappdevelopers,peoplewith
dementia,andresearchers.
159
Chapter7.Discussion
160
Discussion
Theobjectiveofthisthesiswastocontributetoknowledgeandpracticeconcerning
reminiscenceanddigitallifestorywork(LSW)forpeoplewithdementiaandtheir
caregivers.Reminiscenceisapopularapproachwiththisgroupbutitstillhasanuncertain
evidencebase.Inrecentyears,morestudiesexaminingitseffectshavebeenpublished,
warrantinganupdatedreviewofthistopic.Therefore,thefirststudyinthisthesisisa
reviewofreminiscencetherapyfordementia(Chapter2).Thefocusofthethesisthen
movestodigitalLSW,oneofthemanyfacetsofreminiscencetherapy.Growingavailability
andaccessibilityofinformationandcommunicationtechnology(ICT)hasledtoincreased
interestindigitalLSW,particularlyinusingICTtocreateadigitallifestorybookthat
incorporatesarangeofmultimediastimuli(Woods&Subramaniam,2017).Followinga
reviewofICT-basedreminiscencework,SubramaniamandWoods(2010)concludedthat
theapproachisfeasible,butthatmoreworkisneededtoexplorehowitcanbebest
implementedwithpeoplewithdementia(Subramaniam&Woods,2010).Asthereare
severalpossibleapproachestoLSW,bothdigitalandconventional,threesupported
implementationsofdigitalLSWwereexploredinChapter3.Theperspectivesand
experiencesofpeoplewithdementia,familycaregivers,andcarestaffweresought.In
Chapter4,the‘digital’aspectofdigitalLSWwastakenastepfurther.Thefeasibilityand
impactofaremote,self-guidedlifestorybookappanddigitalCitizenScienceapproachwas
explored.ThewiderangeofpossibleimplementationsofdigitalLSW,andvaried
engagementwithitpromptedanexplorationofthepreferencesofpeoplewithdementia
andcaregiversofdigitalLSWinChapter5.Thedigitallifestorybookappspresentedin
Chapters3and4ofthisthesiswerecostlyandtime-consumingtodevelop.Therefore,
Chapter6isareviewandevaluationofavailabletouchscreenappsthatcanbeusedinLSW
with,orby,peoplewithdementia.
Summaryoffindings,howtheyfitwithintheexistingliterature,andthe
contributionoffindingstopracticeandresearch.
Chapter2.Reminiscencetherapyfordementia:Asystematicreviewoftheevidence
fromrandomisedcontrolledtrials.
TheaimofChapter2wastoreviewandevaluatetheeffectivenessofreminiscencetherapy
forpeoplewithdementiaintheareasofwellbeing,cognition,communication,andmood.
161
Thereviewincluded22randomisedcontrolledtrials(RCTs)comprisingatotalof1,972
participants.Sixtrialswereexcludedfromthemeta-analysisastheywereratedashaving
ahighriskofselectionbiasforrandomisation.Therefore,themeta-analysisincludeddata
from1,749participants.Subgroupanalysesofinterventionmodalities(i.e.
individual/group)andsettings(i.e.carehome/community)werecarriedout,andthe
natureandqualityoftheevidencewasevaluated.Resultssuggestthatreminiscence
therapyhadsomepositivebutsmalleffectsonallfouroutcomesofinterest,thoughthese
effectsvariedconsiderablyacrossdifferentsettingsandmodalities.Individualapproaches
wereassociatedwithimprovedcognitionandmood,whilegroup-basedapproacheshada
positiveimpactoncommunication.Theeffectonqualityoflifeandcognitionappeared
mostpromisingincarehomesettings.Theevidencewasofreasonablequality,but
interventionstructuresandprotocolswererarelyreportedinsufficientdetail.
Reminiscenceapproachesanddurationsvariedwidely,andadditionalinformationoften
hadtoberequestedfromstudyauthors.
Resultssupportfindingsfromexistingreviews,inwhichimprovementsinmood
(Blakeetal.,2002;Cotellietal,2012;Huangetal.,2015;Subramaniam&Woods,2012;
Testadetal.,2014;Woodsetal.,2005)andaspectsofcognition(Cotellietal,2012;Huang
etal.,2015;Kimetal.,2006;Kwonetal.,2013;Subramaniam&Woods,2012;Woodsetal.,
2005)havebeenidentified.Similarly,resultsparallelthepreviousfindingsthatgroup
reminiscence(Kimetal.,2006),andreminiscenceingeneral(Kwonetal.,2013)can
significantlybenefitcommunication.Inearlierwork,improvedperformanceonqualityof
lifemeasureswasidentifiedinindividualreminiscenceinterventionsorcarehome
interventions(SubramaniamandWoods,2012),whichcorrespondswiththeresultsof
Chapter2.However,unlikethereviewbyKwonandcolleagues(2013),anoveralleffectof
reminiscenceonqualityoflifewasnotidentified,thoughstudiesinthatreviewwerenot
describedorreferenced.Huangandcolleagues(2015)comparedtheeffectsof
reminiscencebetweencarehomeandcommunitysettings.Theyidentifiedamore
significantimpactofreminiscenceonparticipantsinlong-termcaresettings,comparedto
community-dwellingparticipants.Similarly,inChapter2theeffectofreminiscence
therapyondepressedmoodinpeoplewithdementiawasfoundtobegreaterincare
homesthancommunitysettings.
162
Itappearsthatthelastreviewofreminiscencetherapyfordementiawaspublished
threeyearsago(Huangetal.,2015),makingthisreviewatimelyadditiontotheevidence
base.Itisthemostextensivereviewofthesubjecttodateandrepresentsasignificant
contributiontotheresearchliterature.Themeta-analyseswereofasufficientsizeto
comparedifferentreminiscencemodalitiesandsettingsandthereforeprovidehelpful
insightintotheaspectsofreminiscencethatcontributetodifferentoutcomesforfuture
researchandpractice.Althoughresultsarepromising,thereremainsaneedformorehigh-
qualityworkinthisarea,especiallycomparingtheeffectsofsimpleandintegrative
reminiscence.
Chapter3.Implementingdigitallifestoryworkforpeoplewithdementia:The
relevanceofcontexttouserexperience.
Theaimofthisstudywastoexploreuserexperiencesandperspectivesofthreedifferent
implementationsofasupporteddigitalLSWintervention.Participantslearnedhowtouse
andcreateadigitallifestorybookineither(a)acommunitygroupforpeoplewith
dementiaandfamilycaregiversfacilitatedbyavolunteer,(b)privateone-to-onesessions
alsowithavolunteerforpeoplewithdementiaandfamilycaregivers,and(c)adementia
carehomeforcarestaff.Twothemes,eachwithtwosubthemeswereidentifiedin
interviewdatafrompeoplewithdementia.Thesewere(a)‘Memories’–‘evoking
memories’,‘sharingmemories’,and(b)‘Interventionlimitations’–“it’snotforeveryone”,
‘ICTasabarrier’.Themesandsubthemesinfamilycaregiverdatarelatedto
(a)‘Expectationsandusage’–‘expectationandapprehension’,‘usingthedigitallife
storybook’,‘differentplans’,(b)‘Interventioncontext:individualversusgroup’–‘group
context’,‘individualcontext’,and(c)‘ICTconsiderations'–'multimediaaccessandcapacity',
‘limitationsorlearning?’.Finally,themesidentifiedincarestaffdatawere(a)'Connecting
andsharing'-'collaborationandcommunication','meaningfulinteractionand
conversation','it'stoopersonal',(b)'ICT:creatingopportunities'–'accessingrelevant
materials','anewskill',and(c)'theinfluenceoftheworkenvironment'–'timeand
priorities','convenience','theimpactofmanagement'.Makingconnectionswasacommon
themeacrossthedatasets.Allparticipantsenjoyedusingtheappandfeltthatthe
interventionwasapositiveexperience.However,twoparticipantswithdementiafromthe
individualcontextbecameupsetintwoinstancesduringtheLSWworkshops.Onewas
frustratedbecausehecouldnotremembernames,andtheotherrecalledasadmemory.
163
Resultssuggestthatanindividualcontextisbestforcreatingadigitallifestorybookand
learninghowtouseit,whilethegroupcontextmayhavemoresocialvalue.
Resultssupportpreviousresearchinwhichsimilarthemesandfindingshavebeen
identified.SimilarthemesoroutcomesofLSWhavebeenreportedinpreviouswork.
Theseincludeenhancedmeaningfulcommunicationbetweencarestaffandresidents(e.g.
Clarkeetal.,2003;Gudexetal.,2010;Kellettetal.,2010;Sarne-Fleischmann&Tractinsky,
2008),enhancedcommunicationbetweencarestaffandrelatives(e.g.Clarkeetal.,2003;
Gudexetal.,2010;Kellettetal.,2010;Sarne-Fleischmann&Tractinsky,2008;
Subramaniam&Woods,2016),positiveexperiencesforpeoplewithdementia,despitesad
orfrustratingmoments(Damianakisetal.,2010;Sarne-Fleischmann&Tractinsky,2008;
Subramaniametal.,2013),evokingmemoriesandreconnectingwiththepastfor
participantswithdementia(e.g.Damianakisetal.,2010;Sarne-Fleischmann&Tractinsky,
2008;Subramaniam&Woods,2016),difficultiesusingICT(Stenhouseetal.2013),
appreciationofmultimediaresources(Sarne-Fleischmann&Tractinsky,2008),and
implementationbeinginfluencedbytheworkenvironment(Gudexetal.,2010).The
commontheme‘makingconnections’wasanoverarchingthemeinapreviousreviewof
lifestoryresourcesbyKindellandcolleagues(2010).
ThisworkdemonstratesthefeasibilityofasupporteddigitalLSWintervention
deliveredthroughavolunteer-basedserviceincommunitygroupsettings,individualone-
to-onesettings,andcarehomesettings.Resultscanhelpshapethedevelopmentofdigital
LSWapproachesandprovidesomeinsightintowhatoutcomesmaybeassociatedwith
differentcontexts.Forexample,theindividualsettingwasmoreconducivetocreatingand
learninghowtousethedigitallifestorybook,whilesocialisingwasviewedastheprimary
benefitofthegroupsetting.Resultsofthisresearchhavedirectlyinfluencedchangesin
theLSWservicethatwasinvolvedintheevaluation.Thesensitivemanagementof
poignantordistressingmomentsisnowattheforefrontofvolunteertraining,andthe
servicehassimplifiedthemorecomplicatedaspectsoftheLSWapp(e.g.addingvideoand
audio).Othersignificantimplicationsforpracticearethefindingsthatmulti-level
managementsupportwasessentialforimplementationincarehomes,andthatthedigital
lifestorybookcanalsobeusedforotherpositivepurposes.AsdigitalLSWresearchisstill
arelativelynewadditiontothedementiacareliterature,theresultsofthisexploratory
workcancontributetothegroundworkformoreextensivestudiesinthefuture.
164
Chapter4.Exploringthefeasibilityofaself-guided,digitallifestoryworkappfor
peoplelivingwithdementiaandtheircaregivers:ACitizenScienceapproach.
TheobjectiveofChapter4wastoinvestigatethefeasibilityandimpactofaself-guided
digitalLSWresearchappforpeoplewithdementiaandtheircaregiversusingaCitizen
Scienceapproach.Thestudytookplaceoverathree-monthperiod,andincluded101
participants.Theappwasapurpose-builtdigitallifestorybook,containingbuilt-in
researchquestionnairesrelatingtoqualityoflife(QoL-AD,SWEMWBS)andday-to-day
experiencesofeachLSWsession.Engagementwiththeappdeclinedconsiderablyacross
theinterventionperiod.Responseratesonthequalityoflifequestionnaireswerelowand
nosignificanteffectswereidentified.Similarly,nosignificantcorrelationsbetweenapp
useandqualityoflifewereidentified.Post-sessionfeedbackontheexperienceofeach
sessionwasmostlypositive,thoughresponserateswerealsolow.Follow-upphone
interviewswith19participantsrevealedvariousreasonsfornolongerengagingwiththe
appandthestudy.TheyincludeddifficultieswithICT,notvaluingLSWasanintervention,
andnothavingenoughtimetoparticipate.Overall,theinterventionwasnotsuccessfuldue
tothehighattritionratesandnoevidenceofanyimpactonqualityoflife.However,the
post-sessionfeedbackandsomeusagedataindicatethatthosewhoengagedwiththe
digitallifestorybookenjoyedit.Thehighlevelofinitialinterestintheresearchstudy
suggeststhatCitizenSciencehaspotential.
ThestudypresentedinChapter4representsanovelinterventionandresearch
approachwithpeoplewithdementiaandtheircaregivers.Inanexistingself-guidedapp-
basedstudyforpeoplewithParkinson'sDisease,engagementwiththeinterventionwas
higherthaninChapter4,butitrequiredlesscommitmentasitwaspurelyobservational
andinvolvedfewerresearchtasks(Botetal.,2016).Thepositiveresponsestopost-
sessionfeedbacksupportpreviousworkthathasfoundinteractingwithdigitallife
storybookstobeenjoyable,interesting,andengagingforpeoplewithdementiaand
caregivers(Critten&Kurcikova,2017;Damianakisetal.,2009;Massimietal.,2008).
However,theseinterventionswerecarriedoutwiththesupportofafacilitatorunlikethe
interventioninChapter3.Thedeclineinparticipantengagementwiththeappisrelatively
inlinewithretentionratesingeneralappsacrossallindustries(Perro,2017).
Althoughtheinterventionasawholewasnotconsideredsuccessfulduetopoor
engagementandnoidentifiedpositiveeffectsonusers,thisstudyprovidessometentative
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supportforthefeasibilityofaCitizenScienceapproach.Peoplewithdementiaand
caregiversarecallingforgreaterinclusionindementiaresearch(e.g.Bryden,2016;
ScottishDementiaWorkingGroupResearchSub-Group2015),andCitizenScienceisa
viableresearchapproachthatcansupportthismovement.TheCitizenScienceapproachin
Chapter4wasalowlevelanddidnottrulyembodythespiritofCitizenScience,butresults
providesome‘lessonslearned'thatwillbehelpfulinusingthisapproachwithpeoplewith
dementiainfuture.Inparticular,thatfutureapproachesshouldbemoreparticipatory,
withgreaterinclusionofpotentialusersatallstagesofdevelopment,andensurethat
motivatorssuchasvalidation,incentives,andfeedbackarepresent.Findingssuggestthat
digitalLSWisnotasuitableinterventiontopairwithCitizenScience,possiblybecauseit
involvessignificanttimeandefforttocreateaLSBbeforeitcanbeusedprimarilyfor
viewing.
Chapter5.Investigatingthepreferencesofpeoplewithdementiaandcaregiversin
relationtodigitallifestorywork:Adiscretechoiceexperimentandonlinesurvey.
TheaimofChapter5wastoexplorethepreferencesofpeoplewithdementiaandtheir
caregiversofapproachestosupporteddigitalLSWinterventions.Anonlinesurveywas
completedby16peoplewithdementia,and67caregiverscompletedanonlinediscrete
choiceexperiment(DCE).Fourattributessignificantlyimpactedcaregiverpreferences.
Theseattributesand(favouredlevels)wereanindividualsetting,lowerprice,avoiding
advancedappusability,andanadditionalLSWsession.Preferencesofparticipantswith
dementiavaried,butresultssuggestthatanindividualsettingwasmorepopularthana
groupsettingandthatmostparticipantswouldusetheirdigitallifestorybooktoshare
memorieswithfriendsandfamily.Marginallymoreparticipantswithdementiasaidthey
wouldpayfortheserviceratherthanonlyuseitfreeofcharge.ICTskillswereidentifiedas
anessentialconsiderationinthedesignofaservice,astheyaffectedhowthepersonwith
dementiawouldinteractwiththeapp.Thosewithelementarytointermediateskillswould
wanttodictatethecontentoftheirlifestorybookbuthavesomebodyelsecreateit,while
thosewithadvancedskillswouldprefertolearnhowtouseitsotheycancreatetheirown.
Similarly,avoidinganadvancedappwasasignificantdriverincaregiverpreferences.Even
thoughtherewerejust16respondentswithdementia,allpossibleoptionsoneachsurvey
itemwereselectedatleastonce.
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Thisisoneofthefirststudiestoexplorepreferencesofpeoplewithdementiaand
caregiversofdigitalLSW.AlthoughdigitalLSWhasbeenfoundtobeenjoyableforpeople
withdementiainbothgroupandindividualsettings(e.g.Massimietal.,2008;Stenhouse
etal.,2013),caregiversinthecurrentstudyshowedstrongpreferencesforittobein
individualsettings.InChapter3,therewerevariedpreferencesoftheinterventionsetting.
Caregiversinthegroupsettingappreciatingthesocialaspectofgroupswhilethosein
individualsettingsparticipantscouldnotseehowitcouldworkinagroup.Results
supportpreviousfindingsbyStenhouseandcolleagues(2013)whoobservedthatwhen
participantsintheirstudywereuncomfortablewithtechnology,theypreferredtohavea
researchercreatetheirdigitallifestorybookforthem.Similarly,Mulvennaandcolleagues
(2017)observedthatcaregiversactedas‘administrators’andaddedthereminiscence
stimulitotheapp,whileparticipantswithdementiaprimarilyusedittoviewthe
reminiscencestimuli.
A‘directorandproducer'modelinwhichthepersonwithdementiaortheirfamily
‘directs'thecontentoftheirdigitallifestorybooktoafacilitatorwhocreatesithasoften
beenusedinpreviousdigitalLSWinterventionsforpeoplewithdementia(e.g.Damianakis
etal.,2009;Ludwin&Capstick,2015;Massimietal.,2008;Stenhouseetal.,2013;).
However,animportantfindingofChapter5isthatparticipantswithdementiawhowere
comfortablewithICTwouldprefertolearnhowtouseaLSWappandcreatetheirown
digitallifestorybook.ResultsfromtheDCEprovideinsightintowhichaspectsofLSW
servicesareimportanttocaregivers,andthetrade-offstheymakebetweenattributesof
services,whichcanhelpwiththefutureprovisionanddesignofdigitalLSWinterventions.
ResultsfromthesurveyforparticipantswithdementiahighlightedwhichaspectsofLSW
weregenerallypreferred,butalsohighlighttheimportanceoftailoringfacilitatedLSW
interventionsonacasebycasebasis.
Chapter6.Anevaluationandreviewofavailableappsforlifestoryworkwithpeople
withdementia.
TheaimofChapter6wastoreviewtouchscreenappsthatareavailabletopeoplewith
dementiaandcaregiverstousetocreateadigitallifestorybook.Tenappswereincluded.
TheAppEvaluationTool(Joddrelletal.,2016)wasusedtoratetheaccessibilityofeach
appforpeoplewithdementia.Ratingsrangedfrom44%to75%,withtheaveragerating
beingapproximately60%.Reviewerresponsestotheappsvaried,andthemostcommon
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concernsrelatedtoanabsenceofclearinstructions,orthesizeandcolourofdifferent
elementswithintheapp.Tworeviewerswithdementiawerecomfortablewithusingthe
appsanddidnotrequireadditionalassistanceorguidance,whiletheotherhadlittleorno
experienceanddidnotwanttouseitonherown.
ThisisoneofthefirstreviewsofdigitalLSWappsforusewithorbypeoplewith
dementiatodate.Manyofthecommonissuesidentifiedintheincludedapps,suchasthe
presentationofelementsandlackofcustomisabilityhavebeenhighlightedinprevious
work(Kerkhofandcolleagues,2017).Attitudesofreviewerswithdementiatowardsusing
appsindependentlybearssimilaritytoearlierfindingsinwhichsomepeoplewith
dementiawereabletooperatethemindependently,whileothersrequiredvaryinglevels
ofsupport(Astelletal.,2016;French,2016;Kerkhofetal.,2017;Limetal.,2013).
However,thiscontrastswithoneoftheonlypublishedstudiesofatouchscreenLSWapps
forpeoplewithdementiatodate,inwhichallthreeparticipantsneededsupportto
operateit(Critten&Kucirkova,2017).
Thisreviewhighlightstheexistenceofgoodqualityandfreelyavailable
touchscreenLSWappsthatareavailabletopeoplewithdementiaandtheircaregivers
includingsomethatarenottargetedto,ordevelopedfor,thisgroup.Futureinitiativesor
researchstudiesmaybeabletoharnesstheseapps,ratherthangothroughthetime
consumingandcostlyprocessofdevelopinganewone.Resultsofthereviewwillbe
convertedtoplainlanguageandcommunicatedtopeoplewithdementiaandcaregivers
throughtheAcToDementia5website,whichprovidesindependent,evidence-based
touchscreenapprecommendationstopeoplewithdementiaandtheircaregivers.In
addition,theseresultswillbecommunicatedtodevelopersoftheincludedapps,inthe
hopethatanyaccessibilityissuescanbeimproved.
Discussionoffindings
Theoreticalconsiderations.
Lifestorybooksareoftenassociatedwithbeinganoutputoflifereview,butMorganand
Woods(2010)arguethatLSWshouldbeaninterventioninitsownright.Infact,
5www.actodementia.com
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Subramaniamandcolleagues(2013)suggestthattheprocessoflifereviewmaynotbeas
importantasthepresenceofalifestorybookitself.Intheirstudy,onegroupofpeoplewith
dementiatookpartinalifereviewinterventionwhichincludedtheproductionofa
(conventional)lifestorybook.Theothergroupreceivedagiftofastructuredand
chronologicallifestorybookthatbeencreatedforthembytheirrelativesandtheresearch
team.Directlyafterthelifereviewintervention,thelifereviewgroupshowedsignificant
improvementsonmeasuresofqualityoflifeandautobiographicalmemorycomparedto
thegiftgroup.However,afterthegiftgroupreceivedtheirlifestorybook,theyshowed
similarimprovementsinqualityoflifeandautobiographicalmemorytothelifereview
groupandthedifferencebetweenthetwogroupswasnolongerevident.
TheconceptofLSWisnotexactly‘pinneddown’,butitseemstofallsomewhere
betweenlifereviewandsimplereminiscence.ConventionalLSWisoftenassociatedwith
lifereview,butHaightandDias(1992)studieddifferentcharacteristicsofreminiscence
with240participantsandproposedthattherearethreeessentialcriteriaforlifereview.
Theysuggestthatitshould(a)beconductedone-to-onesothatparticipantshavethe
privacytorevisitsadordistressinglifeevents,(b)beevaluative(thisisthetherapeutic
element),wherebyparticipantscandiscusshowtheyfeelabouttheirlifeeventswitha
trainedpractitioner,and(c)bestructuredandchronologicalsothattheentirelifespanis
coveredandthereis‘wholeness’.Theydefinesimplereminiscenceasa‘randomrecallof
pastevents’(p.289).WhenwerevisitMcKeownandcolleagues’(2006)definitionofLSW
presentedinChapter1,theywritethatLSW‘isusuallyundertakentoelicitanaccountof
someaspectofaperson'slifeorpersonalhistory’(p.238)whichimpliessomesortof
narrative.Eventheterm‘LifeStoryWork’impliesastoryofone’slife.ThisinfersthatLSW
isclosertolifereview,thanitistosimplereminiscence(i.e.presenceofcriterionc),even
moresowhencarriedoutonaone-to-onebasis(i.e.presenceofcriterionaandc).
DigitalLSWontheotherhand,appearstoveerclosertosimplereminiscence.The
digitalLSWinterventionsdetailedinthisthesisplacemoreemphasisoncollectingan
assortmentofmemoriesor‘snapshots'fromaperson’slife,ratherthanplacingthemalong
atrajectory,orlookingattheentiretyoflifeevents.Forexample,inChapter3,participants
withdementiaenjoyedrecallingmemoriesanddiscussingthepast,buttheirdigitallife
storybooksdidnotnecessarilycoverthestoryoftheirlives.Oneparticipant’sdigitallife
storybookconsistedsolelyofmusicbyElvisPresley.InChapter4,mostparticipantsdid
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notseemtoworkthroughphasesoftheirlives,andmostlyfocusedonchaptersrelatingto
leisureandfamilyinstead(seeFig.4.2).Usingappstogatherandviewmemoriesfrom
one’slifestoryappearslessstructuredthanconventionalLSW,particularlywheretheyare
usedwithoutanyguidanceorinvolvementofafacilitator.Thisraisesthequestionsof
whetherdigitalLSWisinfactLSWatall,orifitshouldperhapsbeviewedinadifferent
light,asawayofhighlightingimportant,butunconnected,experiencesoreventsfroma
person’slife.Aconventionallifestorybookimposesakindofsequencethatisusuallynot
presentindigitalapps.Ofcourse,booksdon’thavetobereadorviewedfromstartto
finish,butdigitalformatsencourage‘dipping’inandoutofdifferentpartsmorethan
conventionalones.Forexample,inChapters3and4,participantscouldviewafulllistof
chaptersandpages,andjumpbetweenthemwithoneclick(ortap!).InChapter4,no
significantimprovementsorcorrelationsrelatingtoqualityoflifewereassociatedwith
usingadigitalLSWapp.Asmultimediastimulimayhavethecapacitytomakelife
storybooksmorepowerful(SubramaniamandWoods,2010),perhapsdigitalLSWcould
bebetterimplementedinamorestructuredwaytocreateacohesivelifenarrativewith
benefitsthatcouldstretchbeyondenjoyment.
Contributiontotheory
InChapter1,ContinuityTheoryandKitwood’sTheoryofPerson-centredcarewere
discussedinrelationtoreminiscenceandlifestoryworkforpeoplewithdementia(p.15-
16).Continuitytheorysuggeststhatlife-storiesareessentialtoolstohelpindividuals
adapttochangeandmaintainasenseofidentity.Intheabovesection(Theoretical
Considerations,p.167),theoreticalconsiderationsofreminiscenceanddigitalLSWare
discussed.IfmaintainingidentityandadaptingtochangearethemaingoalsofaLSW
intervention,perhapsthisisbestservedusingamorechronologicalapproach,closerto
LifeReviewthansimplereminiscence,thathelpstopreserveatimeline.Resultsofthe
reviewinChapter2suggestthatcognitiveperformanceismostconsistentlyimprovedon
cognitivetestssuchastheMMSEratherthanthosefocusedonautobiographicalmemory.
However,itwasnotpossibletodelineatebetweendifferenttypesofinterventionsinthe
analyses(e.g.lifereviewversussimplereminiscence).InChapter3,thedigitalLSW
interventionevokedmemoriesforparticipantswithdementiaandhelpedthemto
reconnectwiththeirpast.OnefamilycaregiverinChapter3spokeofhowherrelativewith
dementiawasrememberingmoreasthesessionscontinued.However,asidentitywasnot
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directlymeasuredinthiswork,itisdifficulttounderstandfullyhowtheresultscontribute
tothisparticulartheory.
Kitwood’sTheoryofPerson-CentredCareisthetheoreticalunderpinningofthis
thesis,buttheresultsalsosupportKitwood’ssuggestionthatlifestoriesarethekeyto
person-centredcare.WhenBrooker’s(2004,p.216)interpretationofKitwood’sTheoryis
considered(i.e.valuingpeoplewithdementiaandthosewhocareforthem(V),treating
peopleasindividuals(I),lookingattheworldfromtheperspectiveofthepersonwith
dementia(P),andprovidingapositivesocialenvironmentinwhichthepersoncan
experiencerelativewell-being(S)),resultspointtothepresenceoflifestorybooksincare
homesinChapter3contributingtoallfourelements.Thepersonwithdementiawas
valuedastheywereabletotelltheirstory,andweregiventimetohavemeaningful
discussionandconversationbasedaroundthis(V).Thefocusontheperson’spersonallife
historyandunderstandingmoreaboutthatpersoncontributestothembeingtreatedand
viewedasanindividualwiththeirownsetofexperiences(I).Knowledgeoftheperson’s
lifestoryhelpedcarestafftolookbeyondthediseaseandseetheperson.Byfocusingon
theirlifestory,theperspectiveofthepersonwithdementiawasaccountedfor,andcare
staffwereabletogaininsightintohowtobestcommunicatewithandunderstandthat
person(P).Inaddition,thepresenceofthelifestorybooksinthecarehomecontributedto
creatingapositivesocialenvironmentastheyprovidedameaningfulactivityforthe
residents,atoolforconversation,andawaytopromoteunderstandingamongststaff(S).
Ithasbeensuggestedthattherelationshipbetweenthepersonwithdementiaand
thosewhocareforthemisvitaltoachievesuccessfulperson-centredcare,andthat
‘relationship-centredcare’mightinfactbeamoreappropriateterm(McCormack,2004;
Nolan,Davies,Brown,Keady,&Nolan,2004).Theterm‘relationshipcentredcare’was
originallyproposedbyanAmericanTaskForcewhosuggestedthattheinteractions
betweenpeoplearethefoundationtoanytherapeuticorhealinginterventionsoractivities
(Tresolinietal.,1994).ReminiscenceandLSWmaypotentiallybekeycontributorsto
relationship-centredcareastheyaresocialactivitiesthatfostermeaningful
communicationandinteractionbetweenthepersonwithdementia,caregiver,and
facilitatororhealthprofessional.TheresultsofChapter3supportthisidea.Carestafffelt
thattheywerebetterequippedtocommunicatewithresidentsasaresultofthe
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intervention,andalsousedthelifestorybookstohelpcalmresidentsiftheybecame
distressed.
Relationship-centredcarehassimilarthemestothe‘TriangleofCareforDementia’
(Hannan,Thompson,Worthington,&Rooney,2016).AccordingtotheTriangleofCare,
meaningfulinvolvement,opencommunication,andinclusionofcaregiversofpeoplewith
dementiaincaresettingscanleadtobettercareforthatperson.Previousresearchhas
foundthatinvolvingfamilycaregiversisbeneficialforcare,andveryimportantforpeople
withdementia,familycaregivers,andprofessionals(RoyalCollegeofNursing,2011).In
Chapter3,thedigitallifestorybooksfosteredcommunicationandcollaborationbetween
residentswithdementia,carestaff,andrelatives.Carestaffusedthelifestorybooksto
havemeaningfulcommunicationandconversationwithresients,inadditiontousingitto
sharephotographsandvideosofmomentsinthecarehomewithrelativesthattheywould
haveotherwisemissed.Channelsofcommunicationwerealsoopenedupthroughcare
staffaskingquestionstoinformthelifestorybooks.Theyvaluedtheopportunitytodothis,
andfeltbetterabletocommunicatewithrelatives,andmadetheirworkmoreappreciated.
Incommunitysettings,somefamilycaregiverscommentedonhowtheywerelearning
moreabouttheirrelative,andhowenjoyablethesessionswereforthemaswellasthe
personwithdementia.Participantswithdementia(mostly)enjoyeddiscussingtheirlife
historywithothersandwereevidentlyproudoftheiraccomplishments.
Nolanandcolleagues(2004;2006)builtupontheworkofTresolinietal(1994(
developedtheSensesFrameworkwhichisbasedonthesubjectiveperceptionsofcare
experiencesforbothcareprovidersandcarerecipients.AccordingtoNolan,Davies,and
Brown(2006,p.9-10),
“...theSensesFrameworkcapturestheimportantdimensionsofinterdependent
relationshipsnecessarytocreateandsustainanenrichedenvironmentofcarein
whichtheneedsofallparticipantsareacknowledgedandaddressed”
Thebasisforthisframeworkisthatcaregiversandcarerecipientsshouldfeelasenseof
security,belonging,continuity,purpose,achievement,andsignificance.Resultsofthe
currentthesispointtoreminiscenceandlifestoryworkbeingusefulmethodsto
contributeto,andfoster,relationship-centredcare.Now,theextenttowhichthe
interventionscontributetoeachofthe‘senses’areconsidered.
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Security:ReminiscenceandLSWcanfosterasenseofsecurityasthepersoncandiscuss
theirlifestoriesandexperiencestheirpersonalperspectivewheretherearenorightor
wronganswers.InChapter3,participantswithdementiaenjoyedcreatingtheirlifestory
andfeltitwasapredominantlypositiveexperience.Ontheotherhand,oneparticipantfelt
frustratedatnotbeingabletoremembernamesandplaces,butenjoyedandlooked
forwardtothesessions.Althoughtherewassomeinitialapprehension,familyandstaff
caregiversfeltthattheinterventionwasgoodfortheirrelativewithdementia,andenjoyed
itthemselves.Inaddition,participantsintheindividualmodalityfeltcomfortablewiththe
facilitatorandfeltthatshemadethesessions‘light’and‘fun’.However,theICTaspect
introducesnewchallengesasitinvolvesanewdimensionofunderstandingandlearning
wherebythereiscertainlypotentialtogetthingswrong.InChapter5,participantswith
weakerICTskillsindicatedthattheywouldpreferafacilitatortocreatetheirdigitallife
storybookforthem(avoidfailure),whiledictatingthecontent(experiencesuccess).In
Chapter6,somereviewerswithdementiafelttheywouldn’tbecomfortableusingapps
alongastheywereconcernedabouttheirlackofICTexperience.Thisisperhaps
exacerbatedwhencoupledwithchallengestheyfacedasaresultoftheirdementia.
Continuity:Asdiscussedearlier,continuityisfacilitatedbyLSW,potentiallyenhancing
autobiographicalmemoryandmaintainingatime-linethroughthelifespan,especially
whenconductedchronologically,asinlifereviewwork.However,resultsofChapter2
suggestthatisstillunclearwhetherthiscontributestosignificantimprovementsin
autobiographicalmemory.Cognitivechangeismostevidentonothercognitivetestssuch
astheMMSEwhichfocusesmoreonrecall.
Belonging:Groupreminiscencecanfosterasenseofbelongingthroughgroup
membership,sharing,andcommunication.Familycaregiversinthereminiscencegroups
inChapter3feltthatthesocialaspectofthegroupswasthemostimportantaspectofthe
intervention,forboththemselvesandthepersonwithdementiaastheycouldenjoytheir
timetogetherandmeetothersinsimilarsituations.InChapter2,groupreminiscencewas
associatedwithsignificantlyimprovedcommunicationforpeoplewithdementiawhich
mayindicategrowingconfidenceandeasewithothergroupmembersastheybecome
morefamiliarwitheachother.EventhoughtheCitizenScienceapproachinChapter4was
centredaroundindividualLSW,ithadthepotentialtofosterasenseofbelongingforboth
thepersonwithdementiaandtheircaregiverthroughcreatingacommunityofusers.
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Althoughtheinterventionfellshortofthis,thereiscertainlyscopeforCitizenScience
approachestofosterasenseofbelongingwhenimplementedatahighlevel.
Purpose:AsLSWfocusedonaperson’slife,itcanconsideredameaningfulactivitywith
thepersonattheheartofit(McKeownetal.,2010).Thepurposeoflifestoryworkisto
createatangibleoutcomeintheformofadigitallifestorybook.Carestaffandfamily
caregiversinChapter3feltthatdevelopingthedigitallifestorybookswasapositivething
todo.Participantswithdementiawerepleasedaboutcreatingthem(withtheexceptionof
onepersonwhodroppedout)andsomewereexcitedaboutsharingthefinishedproduct
withothers.Somecaregiversmentionedhowcreatingthelifestorybookwassomething
thattheyandtheirrelativewithdementiawouldsitdowntodotogether.MsKspokeof
howherandherpartnerwerea‘team’;shesearchedforresourcesonlineand‘built’the
lifestorybook,whileMrKgavehertheinformation.Theybothlookedforwardtothevisits
fromtheBookofYoufacilitatoreachweek.Interestingly,inChapter4,this‘purpose’of
creatingadigitallifestorybookthatcouldhavelastingbenefitswasnotgreatenoughto
motivatemostparticipantstocontinuetousetheappandcreatetheirlifestoryrecord,
thoughperhapsthiswasduetotheunsupporteddigitalnatureoftheinterventioncreating
abarrier.
Achievement:Increatingadigitallifestorybook,andhavingmeaningfulcommunication
andconversationasaresult,asenseofachievementwaspresentforparticipantsin
Chapter3.Participantswithdementiafeltproudtosharetheirlifestoryandtheir
achievementswithothers,eveniftheycouldnotnecessarilyusetheappindependently.
Somealsolookedforwardtosharingitwithothers.Bothfamilycaregiversandcarestaff
feltthattheywereparticipatinginameaningfulactivityforthepersonthattheycould
continuetobenefitfrom,evenafterthesessionswerecomplete.Therewasanadditional
senseofachievementforfamilyandcarestaffastheyfeltthattheywerelearninganew
skill(ICT)andfeltproudofthemselvesfordoingso.InChapter5,bothfamilycaregivers
andparticipantswithdementiashowedclearpreferencesforadigitalLSWinterventionto
takeplaceinanindividualsettingratherthanagroupsetting.Tyingintoasenseof
securityabove,perhapsthisisduetoparticipantsvaluingICTsupport,inordertoavoida
situationwherebytheycouldn’t‘work’thedigitallifestorybook.Similarly,participants
withdementiawhohadstrongICTskillspreferredtolearnhowtocreatetheirowndigital
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lifestorybook,whilethosewithweakerskillswantedtocontrolthecontentbuthavethe
facilitatoractuallycreateit.
Significance:Inreminiscenceanddigitallifestorywork,aperson’sexperiencesand
perspectiveisvalidatedthroughthecreationanduseofalifestorybook,inadditiontothe
discussionsduringthecreationandduringtheuse.InChapter3,someparticipantswith
dementiahadsadmomentsbutfeltthattheoverallexperiencewaspositiveandenjoyable.
Familycaregiversinthegroupinterventionvaluedsocialisingwithpeopleinsimilarto
situationstothemselves.However,inChapter4,caregivershadmixedresponsestothe
ideaoflifestorywork.Somefeltthatitwouldbe‘pointless’oremotionallychallengingto
thinkaboutwhattheirrelativewaslikebeforetheirdiagnosis,whileothersfeltvery
positiveaboutit.
Implementationandpracticeconsiderationsofdigitallifestorywork
AccordingtoRussianplaywrightAntonChekhov,‘knowledgeisofnovalueunlessyouput
itintopractice’.Researchisvaluablewhenfindingscanbetranslatedintopracticeto
benefitpeoplewithdementiaandtheircaregivers.Forthemostpart,theresultsofthis
thesisprovidefurthersupportfortheuseofreminiscenceanddigitalLSWinboth
communityandcarehomesettings,whilehighlightingimplementationandpractice
considerations.
Carehomesettings
FindingsfromChapter2suggestthatreminiscencehasamoresignificanteffectonquality
oflife,mood,andcognitionincarehomesettingsthanincommunitysettings.Thiswas
alsoidentifiedinareviewbyHuangandcolleagues(2015)inrelationtomood(butnot
cognition).Continuitytheory(discussedinChapter1)suggeststhatreminiscenceandLSW
canbeparticularlyhelpfulforolderpeoplewhoaregoingthroughchangingsituations
(Atchley1989/1999;Whitbourne,1985;ascitedinParker,1995).Perhaps,carehome
environmentsaremorereceptivetopositiveeffectsofreminiscencebecausetheperson
hasmovedfromtheirhome,relinquishedmanyoftheirpossessionsandtransitionedtoa
carehomeandcommunalliving,makingthemaintenanceofidentityaparticularissue.
Improvedperson-centredcareinresidentialsettingsisoftenassociatedwithLSW.
Ithasbeenfoundtocontributepositivelytoperson-centredcarethroughenhancingthe
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knowledgeandunderstandingofstaffmembersaboutresidents’individualityandlife
stories(Eritzetal.,2016;McKeownetal.,2006;McKeownetal.,2010).Followinga
systematicreviewoftheliteratureonLSW,McKeownandcolleagues(2006)concluded
thatcarestaffconsideredlifestoriesasameansofgettingtoknowandunderstandthe
personwithdementia,whichinturnledtoimprovedcarepractices.TheresultsofChapter
3pointtoimprovedandmorepersonalcommunicationbetweencarestaffandresidents,
astheywereabletousethedigitallifestorybookasaconversationaidandlearnmore
abouttheresidents.Unfortunatelyhowever,theexperiencesofresidentswerenowsought
directly.InaRCTof73peoplewithdementiaand99carestaff,Eritzandcolleagues(2016)
comparedtheeffectsofsupplyingstaffwithresidents’lifehistoriesormedicalhistories.
Staffwhoreceivedthelifehistorieshadasignificantlybetterperceptionofresidents’
personhood,andhadimprovedconversationswithresidentscomparedtothecontrol
group.Benefitsreportedlyreachedtheresidentstoo,astheyhadsignificantlybetter
scoresonqualityoflifemeasurescomparedtothoseinthecontrolgroup.However,an
earlierstudyinvolving348carehomeresidentsacrosstenDanishnursinghomesfound
thatareminiscenceinterventionimprovedthewaystaffviewedtheresidents,butthere
waslittlelong-termeffectoftheinterventionontheresidentsthemselves(Gudexetal.,
2010).Carestaffalsoexperiencedbenefitsincludingimprovedfeelingsofpersonal
accomplishment,lessemotionalexhaustion,lessdepersonalisation,improvedmental
healthandimprovedemotionalexhaustion.Forresidents,nosignificantdifferences
betweenreminiscenceandcontrolgroupswereidentifiedexceptforaqualityoflife
subscale‘responsetosurroundings'.Theauthorssuggestedthatonepossiblereasonfor
thismayhavebeenpoorimplementationoftheinterventionduetostaffhavingalackof
time,lackofresources,andinadequatesupportfrommanagementtoimplementit
effectively.Staffreportedthattheywouldhavewantedmorediscussionaboutthe
reminiscenceactivitiesatmeetings,moreinvolvementfrommanagementinthe
reminiscencetraining,andmorerecognitionforthosewhoactivelyusedit.InChapter3,
carestaffdiscussedandappreciatedthesupportthattheyhadreceivedfrommanagement
inrelationtothedigitalLSWintervention.Managementprovidedsupportatmultiple
levelsbyhostingmeetingswithstaffwhoparticipatedintheinitiative,andappointingstaff
tutorstoassistwithICTqueries.FollowingthedigitalLSWtrainingsessions,management
displayedcertificatesofcompletiononthewall,anddiscussedtheirworkwithrelatives
andatconferences.StaffwhotookpartinthedigitalLSWtrainingwerereferredtoas
"BookofYouChampions'.
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ReminiscenceanddigitalLSWmodalities
HaightandDias(1992)havesuggestedthatforanenjoyableactivityandmeeting
others,group-basedreminiscenceapproachesarepreferablewhileindividualapproaches
arebestifthepurposeistobetherapeutic.FindingsfromthereviewpresentedinChapter
2suggestthatgroup-basedreminiscenceisassociatedwithimprovedcommunication
whileindividualreminiscencewasfoundtobeassociatedwithimprovedmoodand
aspectsofcognition.InChapter3,caregiversinthegroupsettingfeltthatthesocialaspect
oftheinterventionwasthemostbeneficialpart,bothforthemselvesandtheirrelative
withdementia.Group-basedLSWhasmerit,butthereislessfocusonone’sindividual
memoriesasotherscontributetothediscussionsandconversation.Asreminiscenceand
LSWinvolvetheuseofprompts(e.g.photographs,music,etc.),theyhelptoprovide
structureandfocusinconversationforpeoplewithdementia,inadditiontoevoking
memories(Milton,2017).Furthermore,thefocusonlong-termmemoriesmeansitcanbe
aparticularlyhelpfulconversationaidasthesearemoreaccessibleforpeoplewith
dementia,enablingthemtocontributeinbothgroupandindividualcontexts.In
reminiscencegroups,peoplecanfindcommonground,sharememoriesandinterests,and
compareexperiences.Reminiscencecanbeparticularlyhelpfulconversationaid,asthe
focusofreminiscenceandLSWistypicallyonlonger-termmemories,whicharemore
accessibleforpeoplelivingwithdementia(Almetal.,2004).
ResultssuggestthatforthepurposesofLSW,asupportedindividualsetting
appearstobethemosteffectiveforactuallyreminiscingandcreatingadigitallife
storybook,whileagroupsettinglendsitselfmoretosocialisingandmeetingnewpeople.
InChapter3,theindividualinterventionsettingwasmostconducivetocreatingalife
storybook.Furthermore,inChapter5itemergedthatcaregiversandpeoplewith
dementia(forthemostpart)showedpreferencesforLSWtobedeliveredinanindividual
settingratherthanagroupsetting.Creatingalifestorybookcanbeatime-consuming
process,andthedigitalaspectaddsanewdimensionofunderstandingandlearningwhich
maybebettersupportedinanindividualsettingwithafacilitator.Whenparticipantswere
presentedwithaself-guideddigitallifestorybookapp,engagementwasverylow
suggestingthatthepresenceofafacilitatortosupporttheinterventionmightbeimportant
(Chapter4).
177
Sadordistressingmemories
AstheessenceofreminiscenceandLSWinvolvesrecallingandreflectingonlifeevents,it
willnotbeappropriateforsome,asthismaybeasadordistressingexperience.In
particular,thenatureofindividualreminiscencemeansitislikelytohavemoreintensity,
asthereismorefocusonthepersonandtheirlifestory,especiallyiftheinterventionis
intendedtobeevaluative.EveninthelessstructureddigitalLSWinterventionpresented
inChapter3,twooutofthreeparticipantsintheindividualcontexthadsadordistressing
moments.Ontheotherhand,inindividualreminiscence,specifictopicscanbeavoided,
whichmaynotbepossibleingroupworkasotherscontributetothediscussion.In
Chapter4,somecaregiversfeltthattheycouldn'tfaceLSW,asitwastoopainfulforthem.
Trainedandexperiencedfacilitatorsandcarestaffarenotonlyhelpfultoguidethe
intervention,butalsotosupportthepersonshouldanydistressingmemoriesarise.
Therefore,simplereminiscencemaybeamoresuitableapproachinapproachesinwhicha
personusesaLSWappalone,asafacilitatororcaregivermaynotbepresenttosupport
themshouldadistressingmemoryarise.
ICT-relatedconsiderations
TheworkpresentedinthisthesisprovidessomeinsightintohowICTimpactsLSWfor
peoplelivingwithdementiaandtheircaregivers.ICThasbeenadouble-edgedsword
throughoutthechaptersofthisthesis.Forexample,inChapter3,participantscouldnot
operatethedigitallifestorybooksindependently,whichlikelywouldnothavebeenan
issuehadtheybeenusingaconventionallifestorybook.Ontheotherhand,MrKinthat
samechapterdidnothavephotographsoritemsfromhispast,butthefacilitatorandhis
caregiverwereabletosourcephotographsofhisschoolteachers,localarea,andvideosof
hisfavouritefootballteamsonline.InChapters4and6,someparticipantswithdementia
andcaregiverscouldusethedigitallifestorybooksindependently,whileforothersitwasa
significantbarrier.Perhapslifestorymoviesmaybeabetteroptionforthosewhostruggle
tointeractwithtabletcomputersasnoICTskillsarerequiredtousethem,withthe
exceptionofturningthemon.SubramaniamandWoods(2016)foundthatchronological
lifestorymovies(adaptedfromlifestorybooks)wereassociatedwithsignificantly
improvedscoresonmeasuresofmemoryforpersonalevents,butnotthetypeofmemory
thatisclosesttostorytelling.Theysuggestedthatthispartofautobiographicalmemory
maybeaidedbestwiththeprocessofstorytellingandthatalifestorymoviedoesnot
facilitatethis,butinsteadenhancesmemoryforfactualinformation.Therefore,forsome
178
peoplewithdementia,aconventionallifestorybookmaybeamoresuitableoption,even
thoughthereisanopportunitycostofhavinglessaccesstomultimediaresources.
Aninterestingconsiderationistheuseofpre-existing,freelyavailableLSWappsin
practiceandresearchwithpeoplewithdementia,eveniftheyhavenotbeenexplicitly
designedwiththispopulationinmind.InChapter3,thedigitallifestorybookwas
developedforpeoplewhousetheLSWservice,orpaytoaccessit.TheDementiaCitizens
BookOfYou(DCBY)appinChapter4wasdesignedanddevelopedspecificallyforthe
researchstudy,whichwasverycostlyandtime-consuming.Itwasavailableforthree
monthsandisnowobsolete.Usingpre-existingappsthatareavailabletothegeneral
consumerisslowlybecomingmorecustomaryindementiaresearch(e.g.Critten&
Kurcikova;Grøndahletal.,2017),andhasbeencommoninotherareasofdementia
researchsuchastouchscreengames(Astelletal.,2016).InChapter6,somegoodquality,
accessible,andfreelyavailableLSWappswereidentifiedonvariousapprepositories.
Reviewerswithdementiaandcaregiverreviewershadfavourableimpressionsofthese
apps.SomeoftheappshadsimilarcapabilitiesasthosediscussedinChapter3and4,but
representamorecost-effectiveandefficientwaytocarryoutdigitalLSWinfuture
researchandpractice.Now,thereisguidanceonhowappscanbecomemore‘dementia
friendly’throughtheAcToDementiaProject(Joddrelletal.,2016)andwillhopefully
improvethequalityoffreelyavailableLSWappsforpeoplewithdementiaandtheir
caregivers.
Nowadays,eachnewgenerationhasmoreexperiencewithICTthantheprevious,
andthenumberofpeoplewithdementiaandcaregiverswhohavelimitedICTskillsand
experiencewilldeclineinthecomingyears.ICTisbecomingmoreandmorepervasivein
everydaylifeandcanreplacereal-lifesocialinteractionandcommunication.Almand
colleagues(2004)previouslycharacterisedadigitalreminiscenceprogrammeasa
cognitive‘prosthesis’forpeoplewithdementia.Perhapsitisbestconsideredinthisway,
asan‘aid’tocommunicationandconversationwithothers,ratherthananinterventionin
itselfsothatICTwillnotovertakesocialinteractionsandstimulating‘real-life’contact
withothers.
179
Strengths,Limitations,andpersonalexperiences
Anoverallstrengthofthisthesisistheinclusionoffirst-handperspectivesofpeoplewith
dementiaandcaregiversineachofthestudychapters.Thedirectexperiencesof
participantswithdementiaandcaregiversweresoughtinChapter3throughin-person
semi-structuredinterviews,whileparticipantsinChapter4respondeddirectlyto
questionnairesandcouldvoicetheiropinionsinfollow-upphoneinterviews.InChapter5,
anonlinesurveyandDCEwereusedtogetasenseofthepreferencesofpeoplewith
dementiaandcaregiversinrelationtoLSW.Peoplewithdementiaandcaregiversactedas
‘reviewers’inChapter6sothattheirpersonalopinionsoftheappscouldbeincluded.The
voiceofthepersonwithdementiahasbeenasignificantconsiderationthroughoutthis
thesis,thoughitwouldhavebeenpreferabletohavehadahighernumberofparticipants
withdementiaineachofthestudychapters,andmoredepthintheinterviewsinChapters
3and4.
Eachstudyhadindividuallimitations,butthesamplesize,particularlyofpeople
withdementia,isanenduringlimitationthroughoutthisthesis.Furthermore,onlypeople
withmild-moderatedementiawhohadthecapacitytoconsenttoparticipateinresearch
wereincludedinthisthesis.InChapter3,16participantstookpart,butthestudywould
havebenefittedfromahighernumberastheinterviewenvironment,timeconstraints,and
thepresenceofcaregiversreducedthedepthoftheinterviews.Although101participants
consentedtotakepartinChapter4,engagementdeclinedrapidlywithjust3%completing
therequested24sessions.Thereforethequantitativeanalyseswerelimited,andsome
couldnotbecarriedoutasintended.Furthermore,only19participantstookpartinthe
follow-upphoneinterviews,ofwhichjust4werepeoplewithdementia.Consideringthat
theinterventionwasnotparticularlysuccessful,itwouldhavebeenhelpfultolearnmore
frombothparticipantsgroupsabouttheirpersonalexperienceswithit.InChapter5,17
participantswithdementiafilledouttheonlinesurvey,farlessthanthe67caregiverswho
completedtheDCE.Althoughthenumberofcaregiverparticipantsexceededtherequired
minimum,distributionacrossgroupsmeantthatsubgroupanalyseswerenotpossible.A
conveniencesamplewasusedineachoftheabovechapters,meaningthatresultsare
likelynotrepresentativeofthebroaderpopulationofpeoplelivingwithmildtomoderate
dementia.
180
AparticularstrengthofChapter2isthatitisanabridgedversionofaCochrane
CollaborationReview.CochraneReviewsrepresentthe‘goldstandard’forhighquality,
trustedinformationandholdallreviewstoahighstandard.Thereviewmethodologyis
thereforeveryrigorouswhichtranslatestotheabridgedversionpresentedinChapter2.
However,thestrictinclusionandexclusioncriteriastipulatedbytheCochrane
Collaborationmeansthatsomeworkofpotentialinterestwasexcluded,forexample,
studiesthatmaynothavestrictlybeenRCTsormayhavehadunclearrandomisation
methods.
InChapter3,thedatafromeachparticipantgroupwasanalysedseparately,
meaningthatexperiencesofeachgroupineachimplementationcouldbeexplored.
RecruitmentwasconstrainedtopeoplewhowereinteractingwiththeLSWservice,
limitingthepotentialpoolofparticipants.Thisalsomeantthatthedatacollectionprocess
wasparticularlylong,asithadtocoincidewithLSWworkshops.However,themanagers
oftheLSWserviceandthevolunteerfacilitatorswereveryaccommodatingthroughoutthe
study,andkeentoimprovetheirservice.Interviewinginthecarehomeswaschallenging
attimes,asresidentsorotherstaffmemberswouldofteninterruptanddisrupttheflowof
theinterview.Inhindsight,thetopicguidewaslimited,andthestudywouldhave
benefittedfromitbeingmoredeveloped.Althoughthesamplesizeofthestudyissmall,it
isoneofthelargermulti-perspectivequalitativestudiesofdigitalLSWtodate.
Chapter4wasparticularlychallenging.Theinitiativeandresearchstudywere
procuredbytheUKgovernmentandinvolvedarangeofstakeholders.Theappdesignand
parameterswerepredominantlyinfluencedbyothergroups,whohadslightlydifferent
aimsconcerningtheendproduct.Initially,thispieceofresearchwasprojectedtotake
placeinthefirstyearofthisPhD,buttherewereseveralexternaldelaysthatwereoutmy
control,andthegovernmentbackingbecamelessthaninitiallyanticipated.Theapp
developmentprocesswasfarmoretime-consumingthanexpected,despitemehaving
limitedinputintothedesign.Inthebeginning,theintendeddesignoftheprojectincluded
awebsitethatwouldserveasanonlinecommunityinwhichparticipantscouldrespondto
questionnairesorcommunicatewithothers,inadditiontotwosimpleapps.Itwas
envisagedthatparticipantswouldusetheappsasthe‘intervention',andthewebsite
wouldbetheresearchandCitizenScienceelement.Laterintheprocess,thiswaschanged
tothedesignthatispresentedinChapter4,wherebytheentirestudytakesplacewithin
181
oneapp.Aparticulardisadvantageofthisisthatthereisnotangibleoutputofthiscostly
initiativeastheappisnowobsoleteandthewebsitehasnopurpose.Theapproachlacked
thecommunityaspectthatwasoriginallyenvisaged,whichwouldhavebetterrepresented
aCitizenScienceapproach.
Chapter5wasnotoriginallyplanned,butastheDementiaCitizensinitiative
(Chapter4)didnotgenerateparticularlyrichdata,Ibecameconcernedthatthisthesis
wouldlackenoughofaquantitativeelement.Followingvariedengagementwithdigital
LSWinChapter3,Ibecameinterestedinexploringwhatpeoplewithdementiaand
caregiverspreferencesareinrelationtodigitalLSWservicesandinterventions.Itwas
fortunatethatIcouldpartlymodeltheDCEandsurveyonthequalitativeworkinChapter
3,meaningthatIhadsufficienttimetocarryoutthestudy.However,itwasnecessaryto
collectdataonlinewhichlikelycontributedtothedifficultyinrecruitingparticipantswith
dementia.GiventhecognitiveloadofDCEs,itwasnotfeasibletocreateoneforpeople
withdementia,meaningtheresultsofthetwosurveysarenotdirectlycomparable.The
studywouldhavebenefittedfromamoreextendedplanningperiod,inwhichthesurvey
forparticipantswithdementiacouldhavebeendevelopedfurther.
ThekeystrengthofChapter6wasthatpeoplewithdementiaandcaregivers
reviewedtheincludedappsandsharedtheirpersonalperspectivesonthem.Iwas
fortunatetohavethesupportofAcToDementia,whokindlysuppliedmewiththeirApp
EvaluationTool(AET)whichisnotyetofficiallyincirculation.Oneofthedevelopersran
testsofinter-raterreliabilitywhichimprovedthereliabilityoftheAETratings.However
threeappswerenotevaluatedbyasecondperson,whichisalimitation.Themost
challengingpartofthisstudywasthesearchfortheapps,asthesearchfunctionsonthe
variousapprepositoriesarenotintendedforthesepurposes,andnotparticularly
advanced.Agenerallimitationofthisreviewisthatnewappsarelaunchedeveryday
meaningthatthelistofincludedappsmaynolongerbecomprehensive.
Recommendationsforpolicyandfutureresearch
Regardingpolicy,furthersupportshouldbegiventoinitiativesthatexplorethepotential
ofCitizenScienceapproacheswithpeoplewithdementiathroughtouchscreenapps.
AlthoughparticipantsdidnotengagewiththeCitizenScienceinterventioninthecurrent
thesis,thehighlevelofinitialinterestandthegeneralmovementtowardsparticipatory
182
research(ScottishDementiaWorkingGroupResearchSub-Group2015;Bryden,2016)
suggestspromiseforthisapproach.TheliteratureonCitizenSciencepointstothe
importanceofhigh-levelinvolvementof‘citizens'andthepresenceofmotivatorssuchas
validation,feedback,monetaryincentive,andasenseofcommunity(Jennettetal.,2014b;
SocientizeConsortium,2013).Theinterventioninthecurrentthesiswasarelativelylow
levelofCitizenScience,lackedmotivators,anddidnotinvolvepeoplewithdementiaand
caregiverstoalargeenoughextentinthedesignanddevelopmentphases.Perhaps
researchintohigherlevelCitizenScienceforpeoplewithdementiacoupledwithan
interventionthatismorereadilystimulatingsuchasagameorcognitiveexerciseappmay
gainmoretraction.
ThemostrecentdraftoftheNationalInstituteforHealthandCareExcellence
guidelines(NICE,2018)suggeststhatgroup-basedreminiscencecombinedwithother
interventionssuchascognitivestimulationshouldbeofferedtopeoplewithmildto
moderatedementia.Althoughresultsfromthisthesissuggestthatgroupreminiscenceis
enjoyableandmayhavecommunicativebenefitsnotseeninindividualreminiscence,they
alsoindicatethatindividualreminiscenceisjustas,ifnotmorevaluable,andgenerally
preferredbypeoplewithdementiaandtheircaregivers(Chapter2,Chapter3,Chapter5).
However,recallingmemoriesorreflectingonone'slifeisnotanappropriateorhelpful
interventionforeveryone,infact,somemayfinditdistressing.Groupreminiscencemay
haveless‘intensity’thanindividualreminiscenceduetothenatureofgroupchatrather
thanone-to-onework,whichmaysuitsomeparticipantsbetter.Thereforebothindividual
andgroupreminiscenceshouldbeofferedasaninterventiontopeoplewithdementia,but
asoneofarangeofinterventions.
FutureresearchshouldlooktoexploringmorestructureddigitalLSWforpeople
withdementiathatfocusesonmemoriesacrossthelifetrajectory,tounderstandifthisis
morebeneficialthanthesimpleLSWinterventionsimplementedinthisthesis.Infact,a
recentlypublishedprotocoloutlinesaplannedRCTofastructuredindividualLSW
intervention,involvingdigitallifestorybooksforcommunity-dwellingpeoplewith
dementiaandtheircaregivers,whichshouldprovideahelpfulcontributiontothe
literature(Elfrink,Zuidema,Kunz&Westerhof,2017).Outcomesofinterestincludethe
reductionofneuropsychiatricsymptoms,qualityoflife,andhealthofboththepersonwith
dementiaandtheircaregiver.Itisunclearastowhetherthedigitallifestorybooktoolwill
183
beonethatispre-existing,orwillbepurpose-builtfortheintervention.Theuseofexisting
touchscreenappsfordigitalLSWwouldbeahelpfulavenuetoexplore,particularlyif
partnershipswithappdeveloperscanbeestablishedsothatappscanbecontinually
modifiedandimprovedaccordingtouserrecommendations.Furthermore,itwouldbe
interestingtocomparetheeffectsofconventionalstructuredLSWwithdigitalstructured
LSW,asmultimediamayhavethepotentialtomaketheexperiencemorepowerful.Finally,
theexperienceofpeoplewithdementiaduringreminiscenceorLSWsessionsshouldbe
considered,ratherthanrelyingsolelyonpost-sessionmeasures.BrookerandDuce(2000)
previouslyusedanobservationalmethodcalledDementiaCareMappingforthese
purposes,whichperhapscouldbebuiltupon.
ReminiscenceanddigitalLSWinotherlong-termneurologicalconditions
Althoughreminiscencehasoftenbeenusedwitholderpeople,LSWhasbeenapplied
extensivelytoothergroups(Woods&Subramaniam,2017).Thesegroupsincludepeople
withintellectualdisabilities(HussainandRaczka,1997;MiddletonandHewitt1999),
depression(Hallford&Mellor,2013),physicalillnessessuchascancer(Leung,2010),and
childrenandyoungpeople(particularlythosewhoarelookedafterorincare;Willis&
Holland,2009).ThereisagooddealofresearchontheuseofLSWwithpeoplewith
intellectualdisabilitiessuggestingthatitcancontributetobeneficialoutcomessuchas
improvementsininterest,pleasure,andconnectiontothecommunity(VanPuyenbroeck&
Maes,2008).LSWisviewedasbeingparticularlyusefulattimesofchangeandtransition,
whichisasignificantandsometimesfrequentfactorinthelivesofpeopleinthesegroups.
Amorerecentdevelopmentistheapplicationoflifestoryworkwithpeoplewith
longtermneurologicalconditionssuchasthosearisingfromstroke(e.g.aphasia),oran
acquiredbraininjury(e.g.memoryloss).Insomeways,thesegroupsareanalogousto
peoplewithdementia,asthereisadisconnectbetweenpreviousandcurrentcapabilities.
Similartopeoplewithdementia,thesenewchallengescanoftenimpairaperson’ssenseof
selfandself-efficacy.Inthisthesis,itwasfoundthatdigitalLSWandreminiscencewere
consideredenjoyableandmeaningfulactivitiesthatpromotedcommunicationand
interactionindifferentsettingsandmodalities,withvaryinglevelsoffacilitatorsupport.
Therefore,perhapsthereispotentialfortheseapproachestobeusedwithpeoplewith
otherlong-termneurologicalconditionssuchasthosementionedabove.Researchintothe
useofreminiscenceandLSWwiththesegroupsislimited,butbiographicalworkhasbeen
184
associatedwithimprovedwellbeingandidentityrenegotiationforpeoplewhohave
aphasia(Corsten,Schimpf,Konradi,Keilmann,&Hardering,2015)andacquiredbrain
injury(Fish&Richeson,2005;Jenkins&Stranaghan,2010).Forpeoplewithstroke-
inducedaphasia,reminiscenceanddigitalLSWmayserveasa‘prosthetic’toaugmentthe
storytellingprocess(pastorpresent),whilethosewithmemorylosscanbenefitfromthe
useofpromptsandthefocusonmemorieswhichmaybemoredeeplyengrained,
providingpossibilitiesfor‘successful’recalltoimproveself-efficacy.
Conclusion
Inconclusion,thisthesishasreportedonsomeofthemostrecentempiricalevidenceof
reminiscencetherapy,andexploredvariousapproachestodigitalLSWforpeoplewith
dementiaandtheircaregivers.Thereispromisingevidencetosupporttheuseof
facilitatedreminiscenceanddigitalLSWinbothcommunityandcarehomesettings.
DigitalLSWhasagreateremphasisondifferent‘snapshots’ofaperson’slifecomparedto
conventionalLSW,whichemphasisesthewholenessofthelifestory.Resultscontributeto
learningandunderstandingaroundhowICTanddifferentICTsystemsinfluencethe
experienceofLSWforpeoplewithdementiaandtheircaregivers,inbothpositiveand
negativeways.Resultsaddtotheweightofrecommendationsforgroupreminiscenceand
LSWtobeusedwidelyindementiacare,andprovideevidencethatindividualapproaches
shouldbevaluedequally,ifnotmore.Resultsaregenerallyconsistentwithexisting
research.ReminiscenceanddigitalLSWwerefoundtobeenjoyableandmeaningfulfor
peoplewithdementiaandtheircaregivers,bothprofessionalandfamily.
185
Disseminationoffindings
Theauthoraimstopublishallofthechaptersinpeer-reviewedacademicjournals.The
researchpresentedinChapters2,3,4,and5havebeensubmittedforconsiderationfor
publicationinTheInternationalJournalofReminiscenceandLifeReview,AgeingResearch
Reviews,TheInternationalJournalofComputinginHealthcare,andAlzheimer’sand
Dementiarespectively.TheworkpresentedinChapter6willbesubmittedtoDementiaas
aninnovativepracticepaper.FindingsfromChapters3,4,and6havebeenpresentedat
nationalandinternationalconferences,inadditiontosmallerlocalevents.
Thefollowingpresentationsatnationalandinternationalconferencesbasedonthisthesis
havebeenmadetodate:
September2017,IGS65thAnnual&ScientificConference,Wexford,Ireland.
Oralpresentation:ImplementingDigitalLifeStoryWorkforPeoplewithDementia,the
RelevanceofContexttoUserExperience.
May2017,Sonas9thInternationalDementiaConference,Dublin,Ireland.
Posterpresentation:LifeStoryAppsforPeopleLivingwithDementia:AReview.
Oralpresentation:Anoveldigitallifestoryworkapplicationforpeoplewithdementiaand
theircaregivers.
October2016,CentreforAgeingandDementiaResearchConference:RaisingAwareness-
RaisingStandards,CityHall,Cardiff,UK.
Posterpresentation:ADigitalLifeStoryWorkAppforPeoplewithDementiaandtheir
Caregivers.
November2016,26thAlzheimerEuropeConference,Copenhagen,Denmark.
Oralpresentation:ADigitalLifeStoryWorkAppforPeoplewithDementiaandtheir
Caregivers.
186
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Appendix
AppendixA:Ethicalapprovalletters
ApprovalletterfollowingapplicationtodotheworkcarriedoutinChapter2.
208
209
Approvalletterfollowingapplicationforsubstantialamendmenttoincludequalitative
interviewinginpeople’shomes(Chapter3),andtheworkdetailedinChapter4.
210
Approvalletterfollowingapplicationforsubstantialamendmenttoincludefollow-up
interviewswithparticipantsinChapter4,andtheworkdetailedinChapters5and6.
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AppendixB.AcronymsforincludedmeasuresinChapter2
ADAS-Cog:Alzheimer’sDiseaseAssessmentScaleforCognition;
AES-C:ApathyEvaluationScale-Clinician;
AMI:AutobiographicalMemoryInterview;
AMI-E:AutobiographicalMemoryInterviewExtendedVersion;
AMS:Alzheimer'sMoodScale;
CAPE:CliftonAssessmentProceduresfortheElderly;
CASI:CognitiveAbilitiesScreeningInstrument;
CDR-SB:ClinicalDementiaRating-SumofBoxes;
CES-D:CenterforEpidemiologicalStudies-Depression;
COS:CommunicationObservationScale;
CSDD:CornellScaleforDepressioninDementia;
DEMQOL:aself-reportedoutcomemeasuredesignedtoenabletheassessmenthealth-
relatedqualityoflifeofpeoplewithdementia;
GDS:GeriatricDepressionScale;
GDS-SF:GeriatricDepressionScale-ShortForm;
GHQ-12:12-itemGeneralHealthQuestionnaire;
HADS:HospitalAnxietyandDepressionScale;
MADRS:Montgomery-ÅsbergDepressionRatingScale;
MOSES:MultidimensionalObservationScaleforElderlySubjects;
PANAS:PositiveandNegativeAffectSchedule;
QoL-AD:QualityofLifeinAlzheimer'sDisease;
SES:SocialEngagementScale;
SR-QoL:Self-ReportQualityofLife
WIB:Well-being/Ill-beingScale;
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AppendixC.InformationSheetsandConsentformspertainingtoChapter3
PARTICIPANT INFORMATION SHEET
WhatarethebenefitsofDigitalLifeStoryBooks?
Youarebeinginvitedtotakepartinaresearchstudy.Beforeyoudecide,itisimportantthatyouunderstandwhytheresearchisbeingdoneandwhatitwillinvolve.Pleasetaketimetoreadthefollowinginformationcarefullyanddiscussitwithothers if you wish. Ask us if there is anything that is not clear or if you would like moreinformation.Taketimetodecidewhetherornotyouwishtotakepart.Whatisthepurposeofthestudy?
Inrecentyears,manypeoplewithmemoryproblemshaveenjoyedtheopportunitytonarrate,composeandproducetheirownlifestorybook.Withnewtechnology,thelifestorybookcanbe createdona computer,withwords,picturesandmusic. Thisprojectaims toexplore theexperiencesofpeopleincreatingandusingthisdigitallifestorybook.
Whathappensinadigitallifestorybook?
Inpreparingadigitallifestorybook,youcantalkaboutpastmemorieswiththeirrelativeand/orsupporter.Thiscanincludelookingatphotographs,watchingvideoclips, listeningtomusicorsimplyjusttalking.Itisentirelyuptoyouwhattheywanttotalkabout.Youcanchoosewhichmemories,photosorvideostoincludeinyourlifestorybook.Youwillbeabletolookatitwithrelativesandfriends.Theideaistoencourageconversationaboutmemoriesinapleasurable,sociableway.WhyhaveIbeenchosen?
YouhavebeeninvitedtotakepartbecauseyouareinteractingwithBookofYouandyouhavereporteddifficultieswithmemory.
DoIhavetotakepart?
No.Itisuptoyoutodecidewhetherornottotakepart.Ifyoudodecidetotakepartyouwillbegiventhisinformationsheettokeepandbeaskedtosignaconsentform.Ifyoudecidetotakepartyouarestillfreetowithdrawatanytimewithoutgivingareason.WhatwillhappentomeifItakepart?
Ifyoudecide to takepart,youwillparticipate in theBookofYou life storyworksessionsasintended.Wewill ask you to have an informal discussionwith us about your thoughts andexperiencesofthelifestoryworksessionsthreetimes.Thisdiscussionwillbeaudiorecorded.Ifthereisanythingthatyoudonotwanttodooranswer,youdonothaveto.
213
Allparticipantswillbeaskedto1)Meetwitharesearcherforabout10minutesforaninformalintroductioninterview.Thetimestated tocomplete the interviewsandquestionnaires isanestimate; youmay takeasmanybreaksasyouwantorfeelnecessary.2) Meet with the same researcher for about 30 minutes two weeks later for an informalinterviewaboutyourexperienceswithBookofYou.3)Meetwiththesameresearcherfourweekslater,torepeatthisinterviewforthefinaltime.Theresearcherwillbehappytocomeandmeetwithyouandyourrelativeinaconvenientplaceforyou.WhatdoIhavetodo?
Takingpartinthestudydoesnotinvolveanylifestylerestrictionsorchanges.Youcancarryonyoureverydayactivitiesasnormalwhileparticipatinginthestudy.Allweaskisthatyoukeepyourappointmentswithusduringthetimethatyouaretakingpart.Whatarethepossibledisadvantagesandrisksoftakingpart?
Nonehavebeenidentified.
Whatarethepossiblebenefitsoftakingpart?
Ifyoudecidetotakepart,wehopethatthismaybeofsomehelptoyou,andpreviousresearchhas indeedsuggestedthatusingthedigital lifestorybook isanenjoyableexperience.Forallparticipants, the informationweget fromthisstudymayhelpustobettertreatpeoplewithmemorydifficultiesinthefuture.
Willmytakingpartinthestudybekeptconfidential?
Yes.Allinformationcollectedaboutyouandyourrelativeduringthecourseofthestudywillbekept strictly confidential. All datawill be stored under secure conditions andwill be storedseparatelyfromidentifyingdetails.Onlytheresearchersinvolvedinthestudywillhaveaccesstothisdata.Yourlifestorybookwillbepasswordprotectedsothatonlyyouandyourrelativehaveaccesstoit.WhatwillhappenifIdon’twanttocarryonwiththestudy?
Youwillbefreetowithdrawfromthestudyatanytime,withoutgivingareason.Wewillneedtouseinthestudyanydatacollecteduptothepointofwithdrawal.
Whatifsomethinggoeswrong?
Ifyouareunhappyordissatisfiedaboutanyaspectofyourparticipation,wewouldaskyoutotellusabout this in the first instance, so thatwecan try to resolveanyconcernsand finda
214
solution.Anycomplaintaboutthewayyouhavebeendealtwithduringthestudyoranypossibleharmyoumighthave sufferedwill be fully addressed.Pleaseaddress your complaint to theManageroftheSchoolofHealthcareSciences:DrHuwRoberts,FronHeulog,BangorUniversity,BangorLL572EF
Tel:01248383136E-mail:[email protected]
Whoisorganisingandfundingtheresearch?
ThisresearchisfundedasaKnowledgeEconomySkills(KESS)Scholarship.Thisschemeispartfundedby theWelshGovernment’sEuropeanSocialFund (ESF) convergenceprogramme forWestWalesandtheValleys.ThisfundingcoverstherunningcostsoftheresearchprojectwhichisbeingledbyLauraO’Philbin(PhDstudent)andsupervisedbyProfessorBobWoods,aclinicalpsychologistatBangorUniversity.Whatwillhappentotheresultsoftheresearch?
Theresultsoftheresearchwillbepublishedinjournals,presentedatconferencesandformpartofadoctoralthesis.Noparticipantswillbeidentifiedinanypublicationarisingfromthestudy,withouttheirwrittenconsent.Wewillmakearrangementsforparticipantstobeinformedofthefindingsofthestudywheredesired.Whohasreviewedthestudy?
All research in Bangor University is looked at by an independent group of people, called aResearchEthicsCommitteetoprotectyoursafety,rights,well-beinganddignity.ThisstudyhasbeenreviewedandgivenfavourableopinionbytheHealthcareandMedicalSciencesAcademicEthicsCommittee.
WhocanIcontactforfurtherinformation?
Formoreinformationaboutthisresearch,pleasecontact:
MsLauraO’PhilbinorProfessorBobWoodsTel:01248383188Tel:01248383719
Email:[email protected]@bangor.ac.uk
DementiaServicesDevelopmentCentreBangorUniversity,Ardudwy,HolyheadRoad,BangorLL572PX
Thankyouforconsideringtakingpartinthisresearchstudy!
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RELATIVE INFORMATION SHEET
WhatarethebenefitsofDigitalLifeStorybooks?
Invitationtoparticipateinaresearchstudy
Weinviteyouasarelativeof_____________________totakepartinaresearchstudy.relativehasagreedtotakepartinthisresearchandhassignedtheconsentform.Beforeyoudecidetotakepart,itisimportantthatyouunderstandwhytheresearchisbeingconductedandwhatwillberequiredofyoushouldyouagreetobeinvolved.Pleasetaketimetoreadthefollowinginformationanddiscussitwithothersifyouwish.Askusifthereisanythingthat is not clear or if you require further information about the study. Take time to decidewhetherornotyouwishtotakepart.
Whatisthepurposeofthestudy?
Inrecentyears,manypeoplewithmemoryproblemshaveenjoyedtheopportunitytonarrate,composeandproducetheirownlifestorybook.Withnewtechnology,thelifestorybookcanbe createdona computer,withwords,picturesandmusic. Thisprojectaims toexplore theexperiencesofpeopleincreatingandusingthisdigitallifestorybook.
WhathappensinaLifeReview/LifeStorybookgroupandothergroup?
Inpreparingadigitallifestorybook,participantswilltalkaboutpastmemorieswiththeirrelativeand/or supporter. This can include looking at photographs, watching videoclips, listening tomusictheylikeorsimplyjusttalking.Itisentirelyuptotheparticipantonwhattheywanttotalkabout.Theparticipantwilldecidewhatmemories,photosorvideoswillbeincludedintheirlifestorybookandtheywillbeabletolookatitandgothroughitwithrelativesandfriends.Theideaistoencourageparticipantstotalkabouttheirmemoriesinapleasurable,sociableway.
WhyhaveIbeenchosen?
Youhavebeen invitedtotakepartbecauseyourrelativehasdifficultieswithmemoryand islivingwithdementia.Also,yourrelativesuggestedyoutodeveloplifestorybookforhim/her.Wearelookingfor6peoplewhohavememorydifficultiesandtheircaregiverstotakepart.
DoIhavetotakepart?
No.Itisuptoyoutodecidewhetherornottotakepart.Ifyoudodecidetotakepartyouwillbegiventhisinformationsheettokeepandbeaskedtosignaconsentform.Ifyoudecidetotakepartyouarestillfreetowithdrawatanytimewithoutgivingareason.
Whatwillhappeninthisresearch?
Wewillaskyoutousethe‘BookofYou’digitalstorybookwithyourrelativeforfourweeksandthenwewillhaveaninformaldiscussionaboutit.Thiswillbeaudiorecorded.Wewillaskyou
216
tocompletesomequestionnaireswithusaboutyourqualityoflife,moodandrelationships.Ifthereisanythingthatyoudonotwanttodoortoanswer,youdonothaveto.Followingdiscussionofanyquestionsyoumayhavewitharesearcher,andsigningtheconsentform,allparticipantswillbeaskedto:1)Meetwitharesearcherforbetweenanhourandanhourandahalfforaninformalinterviewandtocompletewithyousomequestionnairescoveringyourqualityoflifeandrelationshipwithyourrelative.Thetimestatedtocompletetheinterviewsandquestionnairesisanestimate;youmaytakeasmanybreaksasyouwantorfeelnecessary,andevencompletetheprocessovertwosessionsifpreferred.2)Meetwith thesameresearcher twoweeks later torepeat this interviewandsomeof thequestionnaires.3) Meet with the same researcher four weeks later, to repeat this interview and thesequestionnaireswiththeresearcherforthefinaltime.Theresearcherwillbehappytocomeandmeetwithyouandyourrelativeinaconvenientplaceforyou.
WhatdoIhavetodo?
Takingpartinthestudydoesnotinvolveanylifestylerestrictionsorchanges.Youcancarryonyoureverydayactivitiesasnormalwhileparticipatinginthestudy.Allweaskisthatyoukeepyourappointmentswithusduringthetimethatyouaretakingpart.
Whatarethepossibledisadvantagesandrisksoftakingpart?
Nonehavebeenidentified.
Whatarethepossiblebenefitsoftakingpart?
Ifyoudecidetotakepart,wehopethatthismaybeofsomehelptoyou,andpreviousresearchhas indeedsuggestedthatusingthedigital lifestorybook isanenjoyableexperience.Forallparticipants, the informationweget fromthisstudymayhelpustobettertreatpeoplewithmemorydifficultiesinthefuture.
Willmytakingpartinthestudybekeptconfidential?
Yes.Allinformationcollectedaboutyouandyourrelativeduringthecourseofthestudywillbekept strictly confidential. All datawill be stored under secure conditions andwill be storedseparatelyfromidentifyingdetails.Onlytheresearchersinvolvedinthestudywillhaveaccesstothisdata.Yourlifestorybookwillbepasswordprotectedsothatonlyyouandyourrelativehaveaccesstoit.WhatwillhappenifIdon’twanttocarryonwiththestudy?
Youwillbefreetowithdrawfromthestudyatanytime,withoutgivingareason.Wewillneedtouseinthestudyanydatacollecteduptothepointofwithdrawal.
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Whatifsomethinggoeswrong?
Ifyouareunhappyordissatisfiedaboutanyaspectofyourparticipation,wewouldaskyoutotellusabout this in the first instance, so thatwecan try to resolveanyconcernsand findasolution.Anycomplaintaboutthewayyouhavebeendealtwithduringthestudyoranypossibleharmyoumighthave sufferedwill be fully addressed.Pleaseaddress your complaint to theManageroftheSchoolofHealthcareSciences:DrHuwRoberts,FronHeulog,BangorUniversity,BangorLL572EF
Tel:01248383136E-mail:[email protected]
Whoisorganisingandfundingtheresearch?
ThisresearchisfundedasaKnowledgeEconomySkills(KESS)Scholarship.Thisschemeispartfundedby theWelshGovernment’sEuropeanSocialFund (ESF) convergenceprogramme forWestWalesandtheValleys.Thisfundingcoverstherunningcostsoftheresearchprojectwhichisbeing ledbyLauraO’Philbin(Mastersstudent)andsupervisedbyProfessorBobWoods,aclinicalpsychologistatBangorUniversity.Whatwillhappentotheresultsoftheresearch?
Theresultsoftheresearchwillbepublishedinjournals,presentedatconferencesandformpartofaMastersthesis.Noparticipantswillbeidentifiedinanypublicationarisingfromthestudy,withouttheirwrittenconsent.Wewillmakearrangementsforparticipantstobeinformedofthefindingsofthestudywheredesired.Whohasreviewedthestudy?
All research in Bangor University is looked at by an independent group of people, called aResearchEthicsCommitteetoprotectyoursafety,rights,well-beinganddignity.ThisstudyhasbeenreviewedandgivenfavourableopinionbytheHealthcareandMedicalSciencesAcademicEthicsCommittee.
WhocanIcontactforfurtherinformation?
Formoreinformationaboutthisresearch,pleasecontact:MsLauraO’PhilbinorProfessorBobWoods
Tel:01248383188Tel:01248383719Email:[email protected]@bangor.ac.uk
DementiaServicesDevelopmentCentre
BangorUniversity,Ardudwy,HolyheadRoad,BangorLL572PX
Thankyouforconsideringtakingpartinthisresearchstudy
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STAFFMEMBERINFORMATIONSHEET
WhatarethebenefitsofDigitalLifeStorybooks?
Invitationtoparticipateinaresearchstudy
WeinviteyouasastaffmemberofadementiacarehometotakepartinaresearchinvestigationasyouhavecompletedtrainingsessionswithBookOfYou.Beforeyoudecidetotakepart,itisimportantthatyouunderstandwhytheresearchisbeingconductedandwhatwillberequiredofyoushouldyouagreetobeinvolved.Pleasetaketimetoreadthefollowinginformationanddiscussitwithothersifyouwish.Askusifthereisanythingthatisnotclearorifyourequirefurtherinformationaboutthestudy.Taketimetodecidewhetherornotyouwishtotakepart.
Whatisthepurposeofthestudy?
Inrecentyears,manypeoplewithmemoryproblemshaveenjoyedtheopportunitytonarrate,composeandproducetheirownlifestorybook.Withnewtechnology,thelifestorybookcanbecreatedona computer/tablet computer,withwords,pictures, videoandmusic. Thisprojectaimstoevaluatetheeffectsofcreatingandusingthisdigitallifestorybookandwilllookatqualityoflifeandrelationshipsbetweenparticipantsandtheircaregivers.Whathappensinlifestorywork?
Inpreparingadigitallifestorybook,participantswilltalkaboutpastmemorieswiththeirrelativeand/or professional caregiver. This can include looking at photographs,watching videoclips,listeningtomusictheylikeorsimplyjusttalking.Itisentirelyuptotheparticipantonwhattheywanttotalkabout.Theparticipantwilldecidewhatmemories,photosorvideoswillbeincludedintheir lifestorybookandtheywillbeableto lookat itandgothrough itwithrelativesandfriends. The idea is toencourageparticipants to talkabout theirmemories inapleasurable,sociableway.WhyhaveIbeenchosen?
YouhavebeeninvitedtotakepartbecauseyouareastaffmemberatGlynMenaiandcareforresidentslivingwithdementia.DoIhavetotakepart?
No.Itisuptoyoutodecidewhetherornottotakepart.Ifyoudodecidetotakepartyouwillbegiventhisinformationsheettokeepandbeaskedtosignaconsentform.Ifyoudecidetotakepartyouarestillfreetowithdrawatanytimewithoutgivingareason.
Whatwillhappeninthisresearch?
WewillhaveaninformaldiscussionaboutyourthoughtsofBookOfYouandthenagainthreetofourweekslater.Thiswillbeaudiorecorded.Ifthereisanythingthatyoudonotwanttodoortoanswer,youdonothaveto.Followingdiscussionofanyquestionsyoumayhavewitharesearcher,andsigningtheconsentform,participantswillbeaskedto:
219
1)Meetwitharesearcherforbetween10minutesand20minutesforan informal interviewregarding your thoughts and experiences of Book Of You. The time stated to complete theinterviewsandquestionnairesisanestimate;youmaytakeasmanybreaksasyouwantorfeelnecessary,andevencompletetheprocessovertwosessionsifpreferred.2)Meetwiththesameresearcherthreetofourweekslatertorepeatthisinterview.Theresearcherwillbehappytocomeandmeetwithyouatyourplaceofworkoraconvenientplaceatatimethatsuitsyou.
WhatdoIhavetodo?
Takingpartinthestudydoesnotinvolveanylifestylerestrictionsorchanges.Youcancarryonyoureverydayactivitiesasnormalwhileparticipatinginthestudy.AllweaskisthatyoukeepyourappointmentswithusduringthetimethatyouaretakingpartanduseBookOfYouasoftenasyouwouldhavenormally.
Whatarethepossibledisadvantagesandrisksoftakingpart?
Nonehavebeenidentified.
Whatarethepossiblebenefitsoftakingpart?
Ifyoudecidetotakepart,wehopethatthismaybeofsomehelptoyou,andpreviousresearchhas indeed suggested thatusing thedigital life storybook is anenjoyableexperience. Forallparticipants, the informationweget fromthisstudymayhelpustobettertreatpeoplewithdementiainthefuture.
Willmytakingpartinthestudybekeptconfidential?
Yes.Allinformationcollectedaboutyouandthepersonyoucareforduringthecourseofthestudywillbekeptstrictlyconfidential.Alldatawillbestoredundersecureconditionsandwillbestoredseparatelyfromidentifyingdetails.Onlytheresearchersinvolvedinthestudywillhaveaccesstothisdata.WhatwillhappenifIdon’twanttocarryonwiththestudy?
Youwillbefreetowithdrawfromthestudyatanytime,withoutgivingareason.Wewillneedtouseinthestudyanydatacollecteduptothepointofwithdrawal.
Whatifsomethinggoeswrong?
Ifyouareunhappyordissatisfiedaboutanyaspectofyourparticipation,wewouldaskyoutotellusabout this in the first instance, so thatwecan try to resolveanyconcernsand findasolution.Anycomplaintaboutthewayyouhavebeendealtwithduringthestudyoranypossibleharmyoumighthave sufferedwill be fully addressed.Pleaseaddress your complaint to theManageroftheSchoolofHealthcareSciences:DrHuwRoberts,FronHeulog,BangorUniversity,BangorLL572EF
Tel:01248383136E-mail:[email protected]
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Whoisorganisingandfundingtheresearch?
ThisresearchisfundedasaKnowledgeEconomySkills(KESS)Scholarship.Thisschemeispartfundedby theWelshGovernment’sEuropeanSocialFund (ESF) convergenceprogramme forWestWalesandtheValleys.Thisfundingcoverstherunningcostsoftheresearchprojectwhichisbeing ledbyLauraO’Philbin(Mastersstudent)andsupervisedbyProfessorBobWoods,aclinicalpsychologistatBangorUniversity.Whatwillhappentotheresultsoftheresearch?
Theresultsoftheresearchwillbepublishedinjournals,presentedatconferencesandformpartofaMastersthesis.Noparticipantswillbeidentifiedinanypublicationarisingfromthestudy,withouttheirwrittenconsent.Wewillmakearrangementsforparticipantstobeinformedofthefindingsofthestudywheredesired.Whohasreviewedthestudy?
All research in Bangor University is looked at by an independent group of people, called aResearchEthicsCommitteetoprotectyoursafety,rights,well-beinganddignity.ThisstudyhasbeenreviewedandgivenfavourableopinionbytheHealthcareandMedicalSciencesAcademicEthicsCommittee.
WhocanIcontactforfurtherinformation?
Formoreinformationaboutthisresearch,pleasecontact:MsLauraO’PhilbinorProfessorBobWoods
Tel:01248383188Tel:01248383719Email:[email protected]@bangor.ac.uk
DementiaServicesDevelopmentCentre
BangorUniversity,Ardudwy,HolyheadRoad,BangorLL572PX
Thankyouforconsideringtakingpartinthisresearchstudy!
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222
AppendixD:LifeStoryWorkWorkshopContentforpeoplewithdementiaandtheir
caregivers
1. GeneralinformationaboutBookofYouandlifestorywork.Learninghowtoadd
photographs,learninghowtoaddtext,creatingthefrontcover,andchoosingatitle
forthedigitallifestorybook.
2. Focusonvideotemplates,i.e.howtouploadvideosfromYouTube
3. Learninghowtorecordaudionarrationtoplayoverphotographsandaddingmp3
musicfiles.
4. Learninghowtomovepagesaroundthedigitallifestorybook.Learninghowtoedit
anddeletepages.
5. Coveranythingthathasbeenmissedorunclear.Learninghowtosourcematerials
online.
6. Groupparticipants:Celebrationlunch
Onetooneparticipants:Reviseanythingthatisunclear
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AppendixE:Semi-structuredtopicguidesforinterviewsinChapter3Semi-structuredtopicguideforpeoplewithdementiaandfamilycaregivers
Introductoryinterview
1. Whatareyourexpectationsofdoinglifestorywork?
2. Howareyouwithcomputers?
Followupinterviews
1. Howhaveyoubeengettingonwiththedigitallifestorybook?
2. Howaboutinbetweentheworkshops?
3. WhatdoyouthinkaboutdoingBookOfYouinagroup(forgroupcontext
participants)/one-to-oneathome(forindividualcontextparticipants
4. Whatareyourgeneralthoughts/feelingsaboutBookOfYou
5. DoyouthinktherearebenefitsofBookOfYou?
6. DoyouthinkthereareanydisadvantagesofBookOfYou?
7. Whatareyourplansforthedigitallifestorybookaftertheworkshopsfinish?
8. IsthereanythingyoulikedaboutBookOfYou?
9. Isthereanythingyoudidn’tlikeaboutBookOfYou?
Semi-structuredtopicguideforcarestaff
1. Whatareyourexpectationsofdoinglifestoryworkwithresidents?
2. Howareyouwithcomputers?
3. Howhaveyoubeengettingonwiththedigitallifestorybook?
4. HaveyoubeenusingBookOfYou?
5. DoyouthinktherearebenefitsofBookOfYou?
6. DoyouthinkthereareanydisadvantagesofBookOfYou?
7. HowdoesBookOfYoufitinwithyourworkschedule?
8. WouldanythingmakeiteasierforyoutouseBookOfYou?
9. DoesanythinghinderyouusingBookOfYou?
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AppendixF.Initiale-mailcontactwithpeoplewhoaresigneduptoJoinDementia
Research
Hi there, Thank you for signing up with ‘Join Dementia Research’ and volunteering for research. We’re looking for people for a new research study into dementia care, and we’d love you to take part. What is the Book of You research study? Book Of You is an app for smartphones and tablets which you can use to take part in a 12-week research study into dementia care. You can use the Book of You app on your smartphone or tablet to enjoy making and viewing a life story book and to take part in a research study. This is a collection of photos, words and other things that reflect important aspects of your life. You’ll also be asked some questions about your wellbeing. The research study is being carried out by researchers from the Dementia Services Development Centre at Bangor University, and will help us understand how to provide better life story book apps to people with dementia and their carers in the future. Who is the study for? To join this study, we’re looking for people who
1. Have a diagnosis of dementia, or, are involved in caring for someone with dementia 2. Be able to consent, this means you understand what the study involves and can agree
to take part 3. Have access to an iPad, iPad mini, iPhone or iPod touch
SIgn up to join the study If you’d like to use the pilot app and take part in the study, please go to www.dementiacitizens.org/book-of-you and sign up to take part in the study. You’ll also find full details of the research study on the webpage. If you sign up we’ll email you some instructions for installing and using the Book Of You app. We’ll be on hand to guide you through the process if you need any help. If you’re not eligible or decide that you don’t want to take part in this study, please let us know and we won’t contact you again. If you have any questions you can get in touch with me by replying to this e-mail or by phoning me on 01 248 383 188. Best wishes and thank you for your time, Laura O’ Philbin ************* Laura O’ Philbin Book of You Research Lead (PhD student) Dementia Services Development Centre, Bangor University, Ardudwy, Normal Site, Bangor, Gwynedd, LL57 2PZ � +44 (0) 1248 383188
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AppendixG.InformationSheetpertainingtoChapter4(Phase1:DCBYApp)
PARTICIPANT INFORMATION SHEET
Whatisthepurposeofthestudy?
Inrecentyears,manypeoplewithmemoryproblemshaveenjoyedtheopportunitytonarrate,composeandproducetheirownlifestorybook.Withnewtechnology,thelifestorybookcanbecreatedonacomputer,tabletcomputerormobile,withwords,picturesandmusic.Thisprojectaimstoevaluatetheeffectsofcreatingandusingthisdigitallifestorybookandwilllookatenjoymentandqualityoflifeofparticipantswithmemoryproblemsandtheirrelatives.
Whathappensinadigitallifestorybook?
Participantswillbepromptedbyin-appnotificationstouploadreminiscencematerialssuchasoldphotographs,videosormusicontotheBookofYouappontheirdevice.Therewillbesuggestionsofpossibleitemstouploadbutyouwillhavecompletecontroloverwhatyouwanttoaddtoit.Youcanaddasmuchmaterialasyouliketotheappandyoucanviewitasoftenasyouwish.DoIhavetotakepart?
No.Itisuptoyoutodecidewhetherornottotakepart.Ifyoudodecidetotakepartyouwillbetakenthroughtheconsentprocessontheapp.Ifyoudecidetotakepartyouarestillfreetowithdrawatanytimewithoutgivingareason.WhatwillhappentomeifItakepart?
YouwillbegivenaccesstotheBookOfYouapponyoursmartphoneortablet.Beforestarting,youwillbeaskedtofilloutonetotwobriefquestionnairesaboutyourqualityoflife.Youwillbeaskedtofilloutthesamequestionnairestwicemore.Youwillbepromptedwithinfrequentnotificationstousethe‘BookofYou’digitalstorybook.Aftereachuse,somequestionsabouthowyouarefeelingandhowmuchyouenjoyedthesessionwillappearonthescreen.Allquestionsareansweredonascalesothereisnoneedtowriteanyresponses.Ifthereisanythingthatyoudonotwanttodoortoanswer,youdonothaveto. WhatdoIhavetodo?
Takingpartinthestudydoesnotinvolveanylifestylerestrictionsorchanges.Youcancarryonyoureverydayactivitiesasnormalwhileparticipatinginthestudy.AllweaskisthatyouuseBookofYouacoupleoftimesaweekduringthetimethatyouaretakingpart.Whatarethepossibledisadvantagesandrisksoftakingpart?
Somememoriesmaymakeyoufeelhappyorsad.However,itisentirelyuptoyouwhatmaterialsyouwanttoaddtoBookofYou.
226
Whatarethepossiblebenefitsoftakingpart?
Ifyoudecidetotakepart,wehopethatthismaybeofsomehelptoyou,andpreviousresearchhasindeedsuggestedthatusingthedigitallifestorybookisanenjoyableexperienceandmayhaveapositiveeffectonwell-being.Forallparticipants,theinformationwegetfromthisstudymayhelpustobettertreatpeoplewithmemorydifficultiesinthefuture.
Willmytakingpartinthestudybekeptconfidential?
Yes.Allinformationcollectedaboutyouandyourrelativeduringthecourseofthestudywillbekeptstrictlyconfidential.Yourlifestorybookwillonlybeavailableonyourpersonaldevice.Wewillnothaveaccesstothecontentofyourlifestorybookandwewillnotstoreanyidentifyinginformationaboutyou.
WhatwillhappenifIdon’twanttocarryonwiththestudy?
Youwillbefreetowithdrawfromthestudyatanytime,withoutgivingareason.Wewillneedtouseinthestudyanydatacollecteduptothepointofwithdrawal.
Whatifsomethinggoeswrong?
Ifyouneedassistanceorhaveaqueryaboutanyaspectofyourparticipation,thereisacontactformintheappthatyoucanusetocontacttheresearcher.Ifyouwish,youcanprovideyourphonenumbersotheresearchercantelephone.Ifyouareunhappyordissatisfiedaboutanyaspectofyourparticipation,wewouldaskyoutotellusabout this in the first instance, so thatwecan try to resolveanyconcernsand findasolution.Anycomplaintaboutthewayyouhavebeendealtwithduringthestudyoranypossibleharmyoumighthave sufferedwill be fully addressed.Pleaseaddress your complaint to theManageroftheSchoolofHealthcareSciences:DrHuwRoberts,FronHeulog,BangorUniversity,BangorLL572EF
Tel:01248383136E-mail:[email protected]
Whatwillhappentotheresultsoftheresearch?
Theresultsoftheresearchwillbepublishedinjournals,presentedatconferencesandformpartofaPhDthesis.Noparticipantswillbeidentifiedinanypublicationarisingfromthestudy,withouttheirwrittenconsent.Wewillmakearrangementsforparticipantstobeinformedofthefindingsofthestudywheredesired.Whohasreviewedthestudy?
AllresearchinBangorUniversityislookedatbyanindependentgroupofpeople,calledaResearchEthicsCommitteetoprotectyoursafety,rights,well-beinganddignity.ThisstudyhasbeenreviewedandgivenfavourableopinionbytheHealthcareandMedicalSciencesAcademicEthicsCommittee.
227
InformationSheetpertainingtoChapter4(Phase2:Follow-upinformation)
PARTICIPANT INFORMATION SHEET InvitationtoparticipateinaresearchstudyYouareinvitedtotakepartinthisresearchbecauseyousignedupfortheDementiaCitizensBookOfYouappresearchbuthaveeither
• Notuseditatall• Startedtouseitbutthenstopped.
Beforeyoudecidetotakepart,itisimportantthatyouunderstandwhythisresearchisbeingconductedandwhatwillbeaskedofyoushouldyouagreetobeinvolved.Pleasetaketimetoreadthefollowinginformationanddiscussitwithothersifyouwish.Ifanythingisunclearorifyouwantmoreinformation,pleaseaskus.Whatisthepurposeofthisresearch?Thepurposeofthisresearchistofindoutwhypeopledidnotuse/stoppedusingtheDementiaCitizensApp.Thedropoutrateisquitehighsoweareinterestedinfindingoutwhenparticipantsstoppedusingitandwhy.DoIhavetotakepart?No.Itisuptoyoutodecidewhetherornottotakepart.Ifyoudodecidetotakepartpleaseletusknowandwecanarrangeatimetochat.WhatdoIhavetodo?Takingpartinthisresearchdoesnotinvolveanylifestylerestrictionsorchanges.Ifyoudecidetotakepartyouandyourrelativewillbecontactedbyaresearch(LauraO’Philbin)ataprearrangeddateandtime.Shewillrunthroughaverbalconsentprocessonthephonewithyouandthenaskyousomequestionsaboutwhenyoustoppedusingtheappandwhy.Ifthereisanythingyoudon’twanttoansweryoudon’thaveto.Theresearcherwilltakenotesonwhatyousay. Whatarethepossibledisadvantagesandrisksoftakingpart?Nonehavebeenidentified.Whatarethepossiblebenefitsoftakingpart?Wehopethattheinformationwelearninthisresearchwillhelpustocreatebetterandmoreengagingappsforpeoplewithdementiaandtheircarersinthefuture.Ifyoucompletethephoneinterviewwithusyouwillbegivena£5TescoVoucherasasmalltokenofthanks.Thiswillbepostedtoyou.Willmytakingpartinthestudybekeptconfidential?
228
Yes.Allinformationcollectedaboutyouandyourrelativeduringthecourseofthisresearchwillbekeptstrictlyconfidential.Oncethephoneinterviewiscompletedandthevoucherhasbeensent,yourdetailswillbedeletedfromourrecords.WhatwillhappenifIdon’twanttocarryonwiththestudy?Youwillbefreetowithdraworstoptheinterviewatanytime,withoutgivingareason.Wewillneedtouseanydatacollecteduptothepointofwithdrawal.Whatifsomethinggoeswrong?Ifyouneedassistanceorhaveaqueryaboutanyaspectofyourparticipation,youcancontacttheleadresearcherLauraO’Philbinbyphone,postore-mail.Hercontactdetailsarelistedattheendofthispage.Ifyouareunhappyordissatisfiedaboutanyaspectofyourparticipation,wewouldaskyoutotellusaboutthisinthefirstinstance,sothatwecantrytoresolveanyconcernsandfindasolution.Anycomplaintaboutthewayyouhavebeendealtwithduringthestudyoranypossible harm you might have suffered will be fully addressed. Please address yourcomplainttotheManageroftheSchoolofHealthcareSciences:DrHuwRoberts,FronHeulog,BangorUniversity,BangorLL572EFTel:01248383136E-mail:[email protected]?Theresultsoftheresearchwillbepublishedinjournals,presentedatconferences,andformpartofaPhDthesis.Noparticipantswillbeidentifiedinanypublicationarisingfromthestudywithouttheirwrittenconsent.Wewillmakearrangementsforparticipantstobeinformedofthefindingsofthestudywheredesired.Whohasreviewedthestudy?AllresearchinBangorUniversityislookedatbyanindependentgroupofpeople,calledaResearchEthicsCommitteetoprotectyoursafety,rights,well-beinganddignity.ThisstudyhasbeenreviewedandgivenfavourableopinionbytheHealthcareandMedicalSciencesAcademicEthicsCommittee.WhocanIcontactforfurtherinformation?MsLauraO’Philbin ProfessorBobWoods DementiaServicesDevelopmentCentreTel:01248383188Tel:01248383719 BangorUniversity,Ardudwy,E-mail:[email protected]:[email protected],BangorLL572PX
229
AppendixH:Semistructuredtopicguideforfollow-upphoneinterviewsinChapter
4
1. Introduction(explainingthereasonforthestudy,whatwillhappenandbe
discussedonthephonecall)�
2. Verbalconsent�
3. Areyouapersonwithdementia/memoryproblems,orareyousupportingaperson
�withdementia/memoryproblems?�
4. Whatstagedidyoustopusingtheappat/Whendidyoustopusingtheapp?�
5. Whydidyoustopusingtheapp?�
6. Whatdidyouthinkof
a. Signinguptousetheapp
b. Informationandconsentaspect
c. Theresearchelements
d. Thedigitallifestorybookitself
7. Howdoyouthinkyourexperiencecouldhavebeenimproved?�
8. Howdoyouthinktheappcouldhavebeenimproved?�
9. Howcouldthingshavebeendonedifferently(e.g.researchelements,signingup)
Incentiveinformationandarrangingfordelivery
230
AppendixI:QualityofLife–Alzheimer’sDiseaseMeasure
231
232
AppendixJ:TheShortWarwick-EdinburghMentalWell-beingScale(SWEMWBS)
233
AppendixK.Qol-ADandSWEMWBSastheyappearintheDementiaCitizensBookofYouapp
234
AppendixL.MomentaryAssessmentFeedbackintheDementiaCitizensBookofYou
App
235
AppendixM.InformationsheetsandconsentformspertainingtoChapter5
PARTICIPANT INFORMATION SHEET (presented through BOS Survey
Software with Bangor, DSDC and KESS logos) What is the purpose of the study? In recent years, many people with memory problems have enjoyed the opportunity to narrate, compose and produce their own life storybook. With new technology, the life storybook can be created on a computer, tablet computer or mobile using words, video, pictures and music. This project aims to look at what aspects of delivering this kind of service are important to people so that services can be improved in the future. Why have I been chosen? You have been asked to take part because you experience some memory problems. Do I have to take part? No. It is up to you to decide whether or not to take part. What will happen if I take part? If you choose to take part you will complete an online survey. You will be asked about your preferences about life story work. You will also be asked some basic questions about yourself. What do I have to do? Taking part in the study does not involve any lifestyle restrictions or changes. You will be asked to complete a survey that will take between 15 and 20 minutes to complete. There are no right or wrong answers – we are simply seeking your views. What are the possible risks of taking part? Some people may find filling out surveys a little tiring. There is a ‘finish later’ option on every page so you don’t have to do it all at once. There will also be a bar at the top of the page that will measure your progress so you will know how much is left to do. What are the possible benefits of taking part? You will be contributing to research that will help provide life story work better services to people with memory problems and their caregivers. As a small token of our appreciation we will offer you a £5 Tesco voucher at the end of the survey. Will my taking part in the study be kept confidential?
236
Yes. All information collected about you during the course of the study will be kept strictly confidential. All survey responses will be anonymised, so you will not be identified in any reports or publications. What will happen if I don’t want to carry on with the study? You will be free to withdraw from the study at any time, without giving a reason. We will need to use in the study any data collected up to the point of withdrawal. To withdraw you can just close the survey page. What if something goes wrong? If you need assistance or have a query about any aspect of your participation, you can contact the researcher, Laura O’ Philbin. Her details are at the bottom of this page. If you are unhappy about any aspect of your participation, we would ask you to tell us about this in the first instance, so that we can try to resolve any concerns. Any complaint about your participation or possible you might have suffered will be fully addressed. Please address your complaint to the Manager of the School of Healthcare Sciences: Dr Huw Roberts, Fron Heulog, Bangor University, Bangor LL57 2EF Tel: 01248 383136 E-mail: [email protected] Who is organising and funding the research? This research is funded as a Knowledge Economy Skills (KESS) Scholarship. This funding covers the running costs of the research project which is being led by Laura O’ Philbin (PhD Student) and supervised by Professor Bob Woods, a clinical psychologist at Bangor University. What will happen to the results of the research? The results of the research will be published in journals, presented at conferences and form part of a PhD thesis. No participants will be identified. Who has reviewed the study? All research in Bangor University is looked at by an independent group of people, called a Research Ethics Committee to protect your safety, rights, well-being and dignity. This study has been reviewed and approved by the Healthcare and Medical Sciences Academic Ethics Committee. IfyouwouldlikeanymoreinformationaboutthisstudypleasecontactMsLauraO’Philbin
237
DementiaServicesDevelopmentCentreBangorUniversityArdudwyHolyheadRoad,Bangor,LL572PXE-mail:[email protected]:01248383188ConsentIfyouarehappywiththeaboveinformationandwishtotakepartpleaserespondtothefollowingstatements
I confirm that I have read and understand the project information provided Yes No
I understand my participation in voluntary and that I am free to withdraw at any time without giving a reason
Yes No
I understand that all information given by me or about me will be treated as confidential by the researcher Yes No
I agree to take part in the above research project Yes No Again,ifyouhaveanyquestionsaboutthestudyorgivingyourconsenttobeinthestudy,youcancontacttheleadresearcherLauraO’Philbin.Youcansendherane-mailonl.o-philbin@bangor.ac.ukorphoneheron01248383188
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PARTICIPANT INFORMATION SHEET (Presented on BOS Survey Software with Bangor, DSDC and KESS logos)
What is the purpose of the study? In recent years, many people with memory problems have enjoyed the opportunity to narrate, compose and produce their own life storybook. With new technology, the life storybook can be created on a computer, tablet computer or mobile, with words, pictures and music. This project aims to look at what aspects of delivering this kind of service are important to people so they can be improved in the future. Why have I been chosen? You have been asked to take part because you involved in caring for a person living with dementia. We are looking for at between 70 and 90 people to take part. Do I have to take part? No. It is up to you to decide whether or not to take part. If you do decide to take part you will be asked to tick some boxes indicating that you give your consent to taking part. If you don’t want to take part you can click ‘no’ or simply close this page. What will happen if I take part? If you choose to take part you will complete an online survey. The survey will involve looking at hypothetical ways in which a company can do life story work with people with dementia and their caregivers and choosing which you prefer. There are no right or wrong answers. You will also be asked some questions about yourself. What do I have to do? Taking part in the study does not involve any lifestyle restrictions or changes. You will be asked to complete a survey that will take between 20 and 30 minutes to complete. There are no right or wrong answers – we are simply seeking your views. What are the possible disadvantages and risks of taking part? Some people may find filling out surveys a little tiring. However, there is a ‘finish later’ option and progress bar on every page. What are the possible benefits of taking part? You will be contributing to research that will help life story work services provide better services to people living with dementia and their caregivers. As a small token of appreciation you will be offered a £5 Tesco voucher at the end of the survey. We will post this to you at the end of the study. Will my taking part in the study be kept confidential? Yes. All information collected about you during the course of the study will be kept strictly confidential. All survey responses will be anonymised so you will not be identified in any reports or publications. What will happen if I don’t want to carry on with the study? You will be free to withdraw from the study at any time, without giving a reason. We will need to use in the study any data collected up to the point of withdrawal. To withdraw you can just close the survey page.
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What if something goes wrong? If you need assistance or have a query about any aspect of your participation, you can contact the researcher, Laura O’ Philbin. Her details are at the bottom of this page. If you are unhappy or dissatisfied about any aspect of your participation, we would ask you to tell us about this in the first instance, so that we can try to resolve any concerns and find a solution. Any complaint about the way you have been dealt with during the study or any possible harm you might have suffered will be fully addressed. Please address your complaint to the Manager of the School of Healthcare Sciences: Dr Huw Roberts, Fron Heulog, Bangor University, Bangor LL57 2EF Tel: 01248 383136 E-mail: [email protected] Who is organising and funding the research? This research is funded as a Knowledge Economy Skills (KESS) Scholarship. This scheme is part funded by the Welsh Government’s European Social Fund (ESF) convergence programme for West Wales and the Valleys. This funding covers the running costs of the research project which is being led by Laura O’ Philbin (PhD Student) and supervised by Professor Bob Woods, a clinical psychologist at Bangor University. What will happen to the results of the research? The results of the research will be published in journals, presented at conferences and form part of a PhD thesis. No participants will be identified in any publication arising from the study. We will make arrangements for participants to be informed of the findings of the study where desired. Who has reviewed the study? All research in Bangor University is looked at by an independent group of people, called a Research Ethics Committee to protect your safety, rights, well-being and dignity. This study has been reviewed and given favourable opinion by the Healthcare and Medical Sciences Academic Ethics Committee. Consent: Ifyouarehappywiththeaboveinformationandwishtotakepartpleaserespondtothefollowingstatements
I confirm that I have read and understand the project information provided Yes No
I understand my participation in voluntary and that I am free to withdraw at any time without giving a reason
Yes No
I understand that all information given by me or about me will be treated as confidential by the researcher Yes No
I agree to take part in the above research project Yes No
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IfyouwouldlikeanymoreinformationaboutthisstudypleasecontactMsLauraO’Philbinl.o-philbin@bangor.ac.ukDementiaServicesDevelopmentCentreBangorUniversityArdudwyHolyheadRoad,Bangor,LL572PX
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AppendixN.InformationsheetspertainingtoChapter6
PARTICIPANTINFORMATIONSHEET
Whatisthepurposeofthestudy?
Inrecentyears,manypeoplewithdementiahaveenjoyedtheopportunitytonarrate,composeandproducetheirownlifestorybook.Withnewtechnology,thelifestorybookcanbecreatedonacomputer,tabletcomputerormobile,withwords,picturesandmusic.Thisprojectaimstolookatwhatkindofresourcestherearetodothisandreviewtheseresources.
WhyhaveIbeenchosen?
Youhavebeenaskedtotakepartbecauseyouarelivingwithdementia.
DoIhavetotakepart?
No.Itisuptoyoutodecidewhetherornottotakepart.
WhatwillhappenifItakepart?
YouwillbeaskedtotryoutaLifeStoryWorkprogrammeonalaptop,tabletcomputerormobilephone.Youcanchoosewhichdeviceyouwanttouse.
WhatdoIhavetodo?
Takingpartinthestudydoesnotinvolveanylifestylerestrictionsorchanges.YouwillbeaskedtotryoutaLifeStoryWorkprogramme.Youcanchoosehowlongyouwanttotryitoutforbutweaskthatyouuseitforaminimumof20minutes.Youwillbeaskedtowriteabriefreviewaboutwhatyouthinkabouttheprogramme.
Ifyouwishyoucanwritethereviewbyyourselforoverthephonewiththeresearcher.OtherwiseyoucancometotheAshlinghotelonWednesday22ndMarchat10am.Theresearcherwillsitwithyouandassistyouwithreviewingtheapp.Therearenorightorwronganswers–wearesimplyseekingyourviews.RefreshmentswillbeprovidedattheAshlingHotel.
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Whatarethepossibledisadvantagesandrisksoftakingpart?
Somepeoplemayfinditalittletiring.Thereviewdoesnotneedtobelongandyoucanwithdrawatanytimewithoutgivingareason.
Whatarethepossiblebenefitsoftakingpart?
Youwillbecontributingtoresearchthatwillhelplifestoryworkservicesprovidebetterservicestopeoplewithmemoryproblemsandtheircaregivers.Asasmalltokenofappreciationwewillsendyoua€10TescoorMarksandSpencervoucherifyoucompletetheresearch.Ifyouwish,youcanbenamedasanauthoronthepaper.
Willmytakingpartinthestudybekeptconfidential?
Youcankeepyournameandinformationprivateifyouwish.Ifyoudon’twantyourinformationtobekeptprivatewecanaddyouasanauthoronthepaper.
WhatwillhappenifIdon’twanttocarryonwiththestudy?
Youwillbefreetowithdrawfromthestudyatanytime,withoutgivingareason.
Whatifsomethinggoeswrong?
Ifyouneedassistanceorhaveaqueryaboutanyaspectofyourparticipation,youcancontacttheresearcher,LauraO’Philbin.Herdetailsareatthebottomofthispage.Ifyouareunhappyordissatisfiedaboutanyaspectofyourparticipation,wewouldaskyoutotellusaboutthisinthefirstinstance,sothatwecantrytoresolveanyconcernsandfindasolution.Anycomplaintwillbefullyaddressed.PleaseaddressyourcomplainttotheManageroftheSchoolofHealthcareSciences:DrHuwRoberts,FronHeulog,BangorUniversity,BangorLL572EF.Tel:01248383136E-mail:[email protected]
Whoisorganisingandfundingtheresearch?
ThisresearchisfundedasaKnowledgeEconomySkills(KESS)Scholarship.ThisfundingcoverstherunningcostsoftheresearchprojectwhichisbeingledbyLauraO’Philbin(PhDStudent)andsupervisedbyProfessorBobWoods,aclinicalpsychologistatBangorUniversity.
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Whatwillhappentotheresultsoftheresearch?
Theresultsoftheresearchwillbepublishedinjournals,presentedatconferencesandformpartofaPhDthesis.Noparticipantswillbeidentifiedinanypublicationarisingfromthestudy,unlesstheywanttobe.Wewillmakearrangementsforparticipantstobeinformedofthefindingsofthestudywheredesired.
Whohasreviewedthestudy?
AllresearchinBangorUniversityislookedatbyanindependentgroupofpeople,calledaResearchEthicsCommitteetoprotectyoursafety,rights,well-beinganddignity.ThisstudyhasbeenreviewedandgivenfavourableopinionbytheHealthcareandMedicalSciencesAcademicEthicsCommittee.
If you have any questions you can contact the researcher, Laura, by e-mailing [email protected] or phoning 01 700 5748. Thank you for your time.
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AppendixO.GuidanceprovidedtoappreviewersinChapter7
• Isitclearwhatyouhavetodoontheapp?
• Howisittouse?
• Howcleararethecolours/textsize?
• Isthereanythingyoulikeabouttheapp?
• Isthereanythingyoudon’tlikeaboutapp?
• Isthereanythingyouwouldchangeabouttheapp?
• Wouldyourecommendthisapptoafriend?
• Ifacaregiver:Wouldyouusethisappwithsomebodywithdementia?
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AppendixP.Excludedappsandreasonsforexclusion(Chapter7)
AppName Reasonforexclusion
BookOfYou Awebappthatcannotbedownloadedontoadevice.
MyLifeSoftwareNotavailableforgeneralconsumers,andappearstohavecloseddown.
MindMatePro Notavailableforgeneralconsumers.
RemindMeCare Thisisawebappandcannotbedownloadedontoadevice.
ReplaySporting
Memories
Reminiscencetool,andcreatingalifestorybookisnottheprimaryfocus.
OurBigBoxAppearstohavebeenareminiscenceapp,andhascloseddownduetoalackoffunding.
StoriiCare Notavailableforgeneralconsumers.
ireminiscence Nolongerexistseventhoughthewebsitedoes
AlziumSupporter/
AlziumCaregiverMainfunctionalityrelatedtocareplanning.
SeewhatIMean
(Personal)
Stillindevelopment.Ittranslateswordsintopicturessouserscanbuildcollectionsofmeaningfulimages.
SeewhatIMeanCare Notavailableforgeneralconsumers.
HouseofMemoriesReminiscencetool,andcreatingalifestorybookisnottheprimaryfocus.
Dementieen
herinneringenNotavailableinEnglish
Demenz NotavailableinEnglish
TheDailySparkleNotalifestoryworkapp.Thisisadigitalreminiscencemagazinesubscriptionservice.
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AppendixQ.AppEvaluationToolusedinChapter7.
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