bangor university doctor of philosophy reminiscence and ... · before turning to approaches that...

Bangor University

DOCTOR OF PHILOSOPHY

Reminiscence and digital life story work for dementia care

O Philbin, Laura

Award date:2019

Awarding institution:Bangor University

Link to publication

General rightsCopyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright ownersand it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights.

• Users may download and print one copy of any publication from the public portal for the purpose of private study or research. • You may not further distribute the material or use it for any profit-making activity or commercial gain • You may freely distribute the URL identifying the publication in the public portal ?

Take down policyIf you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediatelyand investigate your claim.

Download date: 15. Oct. 2020

https://research.bangor.ac.uk/portal/en/theses/reminiscence-and-digital-life-story-work-for-dementia-care(0309c28e-cb01-4d7b-902a-fe635d5c8511).html

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.

7

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.

8

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

9

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

11

Chapter1.Introduction

12

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).

13

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

14

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

24

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


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


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*


withtheproduction

ofalifestorybook

30mins/weekfor

6weeks+ ? + + + n/a + +

Melendezet

al.2015


withADGroupRT

30mins,twice/weekfor

10weeks+ + + + + ? + +

Morgan&

Woods2012

17carehomeresidents



(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



withproductionof

LifeStorybook

1hour/weekforaverage

of12weeks.+ + + + + n/a + +

45


Randomisation

Allocation

concealment

Blinding

Attritionbias

Selective

reporting

Otherbias

Training&

supervision

Intervention

protocol

Särkamoetal.

2013



(andacaregiver)

Musiclisteninggroup

reminiscence

90min/weekfor

10weeks

+ + + ? + n/a + +

Tadaka&

Kanagawa

2007a


withADGroupRT 90min/weekfor8weeks + + ? + + n/a + +

Tadaka&

Kanagawa

2007b


withVDGroupRT 90min/weekfor8weeks + + ? + + n/a + +

Thorgrimsen

etal.2002



(andacaregiver)

GroupRT(RYCT)Durationunspecified.

Once/weekfor18weeks+ + + + + n/a + +

VanBogaert

etal.2016

72carehomeresidents


IndividualRT(SolCos

model)

45mins,twice/weekfor

8weeks.+ + + + + n/a + +

Woodsetal.

2012b



(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


Agreedtotakepart 6

Carestaff


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.

72

"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.

75

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.

76

“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).

77

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

78

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

79

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).

82

Theimpactofmanagement.Managementinbothcarehomesweresupportiveof

theinterventionandkeentohavethedigitallifestorybooksintegratedintothedailycare

routine.TheyappointedLSW‘champions’toencourageintegration,andheldoccasional

meetingswithstaffwhohadattendedthetrainingworkshops.Staffmemberswhohad

goodICTskillswereassignedtobe‘tutors’andassistotherstaffifneeded.

“[Themanager]isverykeentogetthisgoingandemlikeIsaidwewanttogetit

goingaswell"(MrM,CH1).

“Yeahandwe’vegotgoodtutorsifweneedtoknowsomethingormaybenotsureof

somethingwecanjustgotocertainpeoplewhoareinvolvedincomputers…”(MrM,

CH1)

83

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,

84

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

85

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

86

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

87

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.

88

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.

90

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

91

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

92

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

93

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

94

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:

95

1. Whatareparticipants’generalexperienceswiththeapp?

2. Whatareparticipants’dailyexperiencesofLSW‘sessions’usingtheapp?

3. Isaremoteapp-basedLSWinterventionfeasibleforpeoplelivingwithdementia

andtheircaregivers/supporters?

4. DoestheuseofaLSWappaffectthequalityoflifeofpeoplewithdementia,and

whereapplicable,theircaregivers/supporters?

5. HowmightCitizenSciencebestbeappliedinthecontextofdementia?

96

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.

97

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

98

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

99

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.

100

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

101

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.

102

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

103

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.

104

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.

105

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).

106

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.

107

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.

108

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)

109

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)

110

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

111

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).

113

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

132

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

133

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).

134

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

135

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

136

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

137

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

138

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.

139

Chapter6.Anevaluationandreviewoftouchscreenlifestoryworkappsforpeoplewith

dementia

140

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.

141

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

142

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

143

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

144

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.

145

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

146

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.

147

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

148

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%

149

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

153

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.

154

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


“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


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

157

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.

158

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

165

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.

166

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

167

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

168

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

169

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

170

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

171

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.

172

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.

173

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

174

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

175

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'.

176

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

References

Addis,D.R.,&Tippett,L.(2004).Memoryofmyself:Autobiographicalmemoryand

identityinalzheimer'sdisease.Memory,12(1),56-74.doi:

10.1080/09658210244000423.

AgedCareRevolution(2014).MyLifeStory(Version1.5).Retrievedfrom

http://mylifestoryapp.com

Akanuma,K.,Meguro,K.,Meguro,M.,Sasaki,E.,Chiba,K.,Ishii,H.,&&Tanaka,N.(2011).

Improvedsocialinteractionandincreasedanteriorcingulatemetabolismaftergroup

reminiscencewithrealityorientationapproachforvasculardementia.Psychiatry

Research,192(3),183-187.doi:10.1016/j.pscychresns.2010.11.012.

Alm,N.,Astell,A.,Ellis,M.,Dye,R.,Gowans,G.,&Campbell,J.(2004).Acognitiveprosthesis

andcommunicationsupportforpeoplewithdementia.Neuropsychological

Rehabilitation,14(1-2),117-134.doi:10.1080/09602010343000147.

AmericanPsychiatricAssociation.(2013).Diagnosticandstatisticalmanualofmental

disorders(5thed.).WashingtonDC:Author.

Amieva,H.,Robert,P.H.,Grandoulier,A.S.,Meillon,C.,DeRotrou,J.,Andrieu,S.,...&

Dartigues,J.F.(2016).Groupandindividualcognitivetherapiesinalzheimer's

disease:TheETNA3randomizedtrial.InternationalPsychogeriatrics,28(5),707-717.

doi:10.1017/S1041610215001830.

Astell,A.J.,Ellis,M.,Alm,N.,Dye,R.,Campbell,J.,&Gowans,G.(2004).Facilitating

communicationindementiawithmultimediatechnology.BrainandLanguage,91(1),

doi:80-81.10.1016/j.bandl.2004.06.043.

Astell,A.J.,Ellis,M.,Alm,N.,Dye,R.,Gowans,G.,&Campbell,J.(2005).Usinghypermedia

tosupportcommunicationinalzheimer'sdisease:TheCIRCAproject.InD.Schmorrow

(Ed.),Foundationsofaugmentedcognition(pp.758-767).

Astell,A.J.,Ellis,M.P.,Alm,N.,Dye,R.,&Gowans,G.(2010).Stimulatingpeoplewith

dementiatoreminisceusingpersonalandgenericphotographs.InternationalJournal

ofComputersinHealthcare,1(2),177-198.doi:10.1504/IJCIH.2010.037461.

Astell,A.J.,Joddrell,P.,Groenewoud,H.,deLange,J.,Goumans,M.,Cordia,A.,&Schikhof,Y.

(2016).Doesfamiliarityaffecttheenjoymentoftouchscreengamesforpeoplewith

187

dementia?InternationalJournalofMedicalInformatics,91,e8.doi:

10.1016/j.ijmedinf.2016.02.001.

Atchley,R.C.(1989).Acontinuitytheoryofnormalaging.TheGerontologist,29(2),183-

190.doi:10.1093/geront/29.2.183.

Atchley,R.C.(1999).Continuityandadaptationinaging.Baltimore,USA:JohnsHopkins

Univ.Press.

Azcurra,D.(2012).Areminiscenceprograminterventiontoimprovethequalityoflifeof

long-termcareresidentswithalzheimer'sdisease.Arandomizedcontrolled

trial.RevistaBrasileiraDePsiquiatria,34(4),422-433.doi:

10.1016/j.rbp.2012.05.008.

Dritschel,B.H.,Williams,J.M.,Baddeley,A.D.,&Nimmo-Smith,I.(1992).Autobiographical

fluency:Amethodforthestudyofpersonalmemory.Memory&Cognition,20(2),133-

140.doi:10.3758/BF03197162.

Baddeley,A.(1992).Whatisautobiographicalmemory?InM.A.Conway,D.C.Rubin,R.H.

Spinnler&W.A.Wagenaar(Eds.),Theoreticalperspectivesonautobiographical

memory(pp.13-26).Netherlands:KluwerAcademicPublishers.

Baines,S.,Saxby,P.,&Ehlert,K.(1987).Realityorientationandreminiscencetherapy:A

controlledcross-overstudyofelderlyconfusedpeople.BritishJournalof

Psychiatry,151(1),222-231.

Bakker,C.,Vugt,M.E.d.,Vliet,D.v.,Verhey,F.,Pijnenburg,Y.A.,Vernooij-Dassen,M.J.,&

Koopmans,R.T.(2014).Unmetneedsandhealth-relatedqualityoflifeinyoung-onset

dementia.AmericanJournalofGeriatricPsychiatry,22(11),1121-1130.Retrievedfrom

http://www.narcis.nl/publication/RecordID/oai:repository.ubn.ru.nl:2066%2F1390

30

Ballard,C.,Corbett,A.,Chitramohan,R.,&Aarsland,D.(2009).Managementofagitation

andaggressionassociatedwithalzheimerʼsdisease:Controversiesandpossible

solutions.CurrentOpinioninPsychiatry,22(6),532-540.doi:

10.1097/YCO.0b013e32833111f9.

Bandeira,D.R.,Pawlowski,J.,GonÇalves,T.R.,Hilgert,J.B.,Bozzetti,M.C.,&Hugo,F.N.

(2007).Psychologicaldistressinbraziliancaregiversofrelativeswithdementia.Aging

&MentalHealth,11(1),14-19.doi:10.1080/13607860600640814.

188

Batson,P.,Thorne,K.,&Peak,J.(2002).Lifestoryworkseesthepersonbeyondthe

dementia.JournalofDementiaCare,10(3),15-17.

Bell,V.,&Troxel,D.(2001).Thebestfriendsstaff:Buildingacultureofcareinalzheimer's

programs.Baltimore,MD:HealthProfessionsPress.Retrieved

fromhttp://catalog.hathitrust.org/Record/004171910.

Black,B.S.,Johnston,D.,Rabins,P.V.,Morrison,A.,Lyketsos,C.,&Samus,Q.M.(2013).

UnmetneedsofCommunity-Residingpersonswithdementiaandtheirinformal

caregivers:Findingsfromthemaximizingindependenceathomestudy.Journalofthe

AmericanGeriatricsSociety,61(12),2087-2095.doi:10.1111/jgs.12549.

Blake,M.(2013).Groupreminiscencetherapyforadultswithdementia:Areview.British

JournalofCommunityNursing,18(5),228-232.doi:10.12968/bjcn.2013.18.5.228.

Bluck,S.,Alea,N.,Habermas,T.,&Rubin,D.C.(2005).Ataleofthreefunctions:TheSelf–

Reportedusesofautobiographicalmemory.SocialCognition,23(1),91-117.doi:

10.1521/soco.23.1.91.59198.

Bohlmeijer,E.T.,Roemer,M.,Cuijpers,P.,&Smit,F.(2007).Theeffectsofreminiscenceon

psychologicalwell-beinginolderadults:Ameta-analysis.Aging&Mental

Health,11(3),291-300.doi://doi.org/10.1080/13607860600963547.

Bohlmeijer,E.,Smit,F.,&Cuijpers,P.(2003).Effectsofreminiscenceandlifereviewon

late-lifedepression:Ameta-analysis.InternationalJournalofGeriatric

Psychiatry,18(12),1088-1094.doi:10.1002/gps.1018.

Bot,B.M.,Suver,C.,Neto,E.C.,Kellen,M.,Klein,A.,Bare,C.,...Trister,A.D.(2016).The

mPowerstudy,parkinsondiseasemobiledatacollectedusingResearchKit.Scientific

Data,3.doi:160011.10.1038/sdata.2016.11.Retrieved

fromhttp://www.ncbi.nlm.nih.gov/pubmed/26938265.

Braun,V.,&Clarke,V.(2006).Usingthematicanalysisinpsychology.QualitativeResearch

inPsychology,3(2),77-101.doi:10.1191/1478088706qp063oa.

Brooker,D.,&Duce,L.(2000).Wellbeingandactivityindementia:Acomparisonofgroup

reminiscencetherapy,structuredgoal-directedgroupactivityandunstructured

time.Aging&MentalHealth,4(4),354-358.doi:10.1080/713649967.

Brooker,D.(2004).Whatisperson-centredcareindementia?ReviewsinClinical

Gerontology,13(3),215-222.doi:10.1017/S095925980400108X.

189

Bruce,E.,&Schweitzer,P.(2008).Workingwithlifehistory.InM.Downs,&B.J.Bowers

(Eds.),Excellenceindementiacare:Researchintopractice(pp.168-186).Maidenhead:

OpenUniversityPress.

Bryden,C.(2016).Nothingaboutus,Withoutus!:20yearsofdementiaadvocacy.London:

JessicaKingsleyPublishers.Retrieved

fromhttp://www.aspresolver.com/aspresolver.asp?SWON;3369145.

Butler,R.N.(1963).Thelifereview:Aninterpretationofreminiscenceinthe

aged.Psychiatry,26(1),65-76.doi:10.1080/00332747.1963.11023339.

Caddell,L.S.,&Clare,L.(2011).Theimpactofdementiaonselfandidentity:Asystematic

review.ClinicalPsychologyReview,30(1),113-126.doi:10.1016/j.cpr.2009.10.003.

Carr,A.C.,Woods,R.T.,&Moore,B.J.(1986).Automatedcognitiveassessmentofelderly

patients:Acomparisonoftwotypesofresponsedevice.TheBritishJournalofClinical

Psychology/theBritishPsychologicalSociety,25(Pt4),305.Retrieved


Charlesworth,G.,Burnell,K.,Crellin,N.,Hoare,Z.,Hoe,J.,Knapp,M.,...Orrell,M.(2016).

Peersupportandreminiscencetherapyforpeoplewithdementiaandtheirfamily

carers:Afactorialpragmaticrandomisedtrial.JNeurolNeurosurgPsychiatry2016;

0:1-11,87(11),1218-1228.doi:http://doi.org/10.1136/jnnp-2016-313736.

Clarke,A.,JaneHanson,E.,&Ross,H.(2003).Seeingthepersonbehindthepatient:

Enhancingthecareofolderpeopleusingabiographicalapproach.JournalofClinical

Nursing,12(5),697-706.doi:10.1046/j.1365-2702.2003.00784.x.

Cohen-Mansfield,J.,Dakheel-Ali,M.,Marx,M.S.,Thein,K.,&Regier,N.G.(2015).Which

unmetneedscontributetobehaviorproblemsinpersonswithadvanced

dementia?PsychiatryResearch,228(1),59-64.doi:10.1016/j.psychres.2015.03.043.

Coleman,P.(1986).Agingandreminiscenceprocesses.NewYork,USA:JohnWiley&Sons.

Coleman,P.G.,Ivani-Chalian,C.,&Robinson,M.(1998).Thestorycontinues:Persistenceof

lifethemesinoldage.AgeingandSociety,18(4),389-419.Retrieved

fromhttp://journals.cambridge.org/abstract_S0144686X98006989.

Corbett,A.,Burns,A.,&Ballard,C.(2014).Don’tuseantipsychoticsroutinelytotreat

agitationandaggressioninpeoplewithdementia.BritishMedicalJournal,349.doi:

10.1136/bmj.g6420.

190

Corsten,S.,Schimpf,E.J.,Konradi,J.,Keilmann,A.,&Hardering,F.(2015).Theparticipants’

perspective:Howbiographic-narrativeinterventioninfluencesidentitynegotiation

andqualityoflifeinaphasia.InternationalJournalofLanguage&Communication

Disorders,50(6),788-800.doi:10.1111/1460-6984.12173

Cotelli,M.,Manenti,R.,&Zanetti,O.(2012).Reminiscencetherapyindementia:A

review.Maturitas,72(3),203-205.doi:

http://doi.org/10.1016/j.maturitas.2012.04.008.

Critten,V.,&Kucirkova,N.(2017).'Itbringsitallback,allthosegoodtimes;itmakesme

goclosetotears'.Creatingdigitalpersonalisedstorieswithpeoplewhohave

dementia.Dementia(London,England),1–18.doi:10.1177/1471301217691162.

Damianakis,T.,Crete-Nishihata,M.,Smith,K.L.,Baecker,R.M.,&Marziali,E.(2010).The

psychosocialimpactsofmultimediabiographiesonpersonswithcognitive

impairments.TheGerontologist,50(1),23-35.doi:10.1093/geront/gnp104.

Dempsey,L.,Murphy,K.,Cooney,A.,Casey,D.,O’Shea,E.,Devane,D.,...Hunter,A.(2014).

Reminiscenceindementia:Aconceptanalysis.Dementia:TheInternationalJournalof

SocialResearchandPractice,13(2),176-192.doi:http://0-

dx.doi.org.unicat.bangor.ac.uk/10.1177/1471301212456277.

DenBroeder,L.,Devilee,J.,Oers,V.,Hans,Schuit,A.J.,&Wagemakers,A.(2016).Citizen

scienceforpublichealth.HealthPromotionInternational,4824.

DepartmentofHealth.(2005).Mentalcapacityact.London:HMSO.

DepartmentofHealth.(2013)G8DementiaSummitDeclaration.CabinetOffice,Prime

Minister’sOffice,London.

DepartmentofHealth.(2015)PrimeMinister'sChallengeonDementia2020.CabinetOffice,

PrimeMinister’sOffice,London.Retrieved

fromhttps://www.gov.uk/government/uploads/system/uploads/attachment_data

/file/414344/pm-dementia2020.pdf

Dowrick,A.,&Southern,A.(2014).Dementia2014:Opportunityforchange.London:

Alzheimer'sSocietyUK.

Dunne,T.,&Dunne,J.(2017).Foreward.InP.Kaiser,&R.Eley(Eds.),Lifestoryworkwith

peoplewithdementia:Ordinarylives,extraordinarypeople(pp.9-12).

London/Philadelphia:JessicaKingsleyPublishers.

191

Eley,R.,&Kaiser,P.(2017).Introduction.InP.Kaiser,&R.Eley(Eds.),Lifestoryworkwith

peoplewithdementia:Ordinarylives,extraordinarypeople(pp.13-20).

London/Philadelphia:JessicaKingsleyPublishers.

Elfrink,T.R.,Zuidema,S.U.,Kunz,M.,&Westerhof,G.J.(2017).Theeffectivenessof

creatinganonlinelifestorybookonpersonswithearlydementiaandtheirinformal

caregivers:Aprotocolofarandomizedcontrolledtrial.BMCGeriatrics,17(95).doi:

10.1186/s12877-017-0471-y.

Erikson,E.H.(1950).Childhoodandsociety.NewYork:Norton.

Eritz,H.,Hadjistavropoulos,T.,Williams,J.,Kroeker,K.,Martin,R.R.,Lix,L.M.,&Hunter,P.

V.(2016).Alifehistoryinterventionforindividualswithdementia:Arandomised

controlledtrialexaminingnursingstaffempathy,perceivedpatientpersonhoodand

aggressivebehaviours.AgeingandSociety,36(10),2061-2089.doi:

10.1017/S0144686X15000902.

Eustache,M.,Laisney,M.,Juskenaite,A.,Letortu,O.,Platel,H.,Eustache,F.,&Desgranges,B.

(2013).Senseofidentityinadvancedalzheimer'sdementia:Acognitivedissociation

betweensamenessandselfhood?ConsciousnessandCognition,22(4).doi:1456-1467.

10.1016/j.concog.2013.09.009.

FeltMediaLLC(2016).MemLifePrivateLifeStoryJournal,Diary&Memoir(Version0.9.2).

Retrievedfromhttps://itunes.apple.com/us/app/memlife/id1102230732

Fish,A.L.,&Richeson,N.E.(2005).Reminiscingcircles:Acasereport.AmericanJournalof

RecreationTherapy,4(1),11-16.

Follett,R.,&Strezov,V.(2015).Ananalysisofcitizensciencebasedresearch:Usageand

publicationpatterns.PloSOne,10(11).doi:10.1371/journal.pone.0143687.Retrieved


French,T.(2016).Dementiaanddigitalusingtechnologytoimprovehealthandwellbeing

forpeoplewithdementiaandtheircarers.UnitedKingdom:TinderFoundation.

Gibson,F.(1994).Whatcanreminiscencecontributetopeoplewithdementia?InJ.Bornat

(Ed.),Reminiscencereviewed:Evaluations,achievements,perspectives(pp.46-60).

Buckingham,England:OpenUniversityPress.

192

Gibson,F.(2005).Fitforlife:Thecontributionoflifestorywork.InM.Marshall

(Ed.),Perspectivesonrehabilitationanddementia(pp.175-179).London:Jessica

KingsleyPublishers.

Goldwasser,A.N.,Auerbach,S.M.,&Harkins,S.W.(1987).Cognitive,affectiveand

behaviouraleffectsofreminiscencegrouptherapyondementedelderly.International

JournalofAgingandHumanDevelopment,25(3),209-222.//doi.org/10.2190/8UX8-

68VC-RDYF-VK4F.

Gonzalez,J.,Mayordomo,T.,Torres,M.,Sales,A.,&Melendez,J.C.(2015).Reminiscence

anddementia:Atherapeuticintervention.InternationalPsychogeriatrics,27(10),

1731-1737.doi:http//doi.org/10.1017/S1041610215000344.

Greenberg,D.L.,&Rubin,D.C.(2003).Theneuropsychologyofautobiographical

memory.Cortex,39,687-728.Retrieved


Greene,J.D.W.,Hodges,J.R.,&Baddeley,A.D.(1995).Autobiographicalmemoryand

executivefunctioninearlydementiaofalzheimertype.Neuropsychologia,33(12),

1647-1670.doi:10.1016/0028-3932(95)00046-1.

GreyMattersCareLLC(2016).GreyMatters:ReachingBeyondDementia(Version1.0.5).

Retrievedfromhttps://itunes.apple.com/us/app/greymatters-reaching-beyond-

dementia/id900645661?mt=8

Gridley,R.(2017).Understandingtheoutcomesoflifestorywork.InP.Kaiser,&R.Eley

(Eds.),Lifestoryworkwithpeoplewithdementia:Ordinarylives,extraordinary

people(pp.69-82).London/Philadelphia:JessicaKingsleyPublishers.

Groenewoud,H.,DeLange,J.,Schikhof,Y.,Astell,A.,Joddrell,P.,&Goumans,M.(2017).

Peoplewithdementiaplayingcasualgamesonatablet.Gerontechnology,16(1),37-47.

doi:10.4017/gt.2017.16.1.004.00.

Grøndahl,V.A.,Persenius,M.,Baath,C.,&Helgesen,A.K.(2017).Theuseoflifestoriesand

itsinfluenceonpersonswithdementia,theirrelativesandstaff-asystematicmixed

studiesreview.BMCNursing,16,28.doi:10.1186/s12912-017-0223-5.

Gudex,C.,Horsted,C.,Jensen,A.M.,Kjer,M.,&Soerensen,J.(2010).Consequencesfrom

useofreminiscence-arandomisedinterventionstudyintendanishnursing

193

homes.BMCGeriatrics,10(1),33.doi:http//0-

dx.doi.org.unicat.bangor.ac.uk/10.1186/1471-2318-10-33.

Habermas,T.,&Bluck,S.(2000).Gettingalife:Theemergenceofthelifestoryin

adolescence.PsychologicalBulletin,126(5),748-769.doi:10.1037//0033-

2909.126.5.748.

Hahn,G.J.,&Shapiro,S.S.(1966).Acatalogandcomputerprogramforthedesignand

analysisoforthogonalsymmetricandasymmetricfractionalfactorialexperiments(1st

ed.).Schenectady,NewYork:GeneralElectric,ResearchandDevelopmentCenter.

Haight,B.K.(1992).Thestructuredlifereviewprocess:Acommunityapproachtothe

agingclient.InG.M.M.Jones,&B.M.L.Miesen(Eds.),Caregivingindementia:

Researchandapplications(1sted.,pp.272-292).London:Routledge.

Haight,B.,Gibson,F.,&Michel,Y.(2006).Thenorthernirelandlifereview/lifestorybook

projectforpeoplewithdementia.Alzheimer's&Dementia,2(1),56-58.doi:

10.1016/j.jalz.2005.12.003.

Haight,B.K.,&Dias,J.K.(1992a).Examiningkeyvariablesinselectedreminiscing

modalities.InternationalPsychogeriatrics,4(4),279-290.doi:

10.1017/S1041610292001315.

Haight,B.K.,&Dias,J.K.(1992b).Examiningkeyvariablesinselectedreminiscing

modalities.InternationalPsychogeriatrics,4(4),279-290.doi:

10.1017/S1041610292001315.

Haklay,M.(2012).Citizenscienceandvolunteeredgeographicinformation–overviewand

typologyofparticipationvolunteeredgeographicinformation,publicparticipation,

andcrowdsourcedproductionofgeographicknowledge.InD.Sui,D.Elwood&M.

Goodchild(Eds.),Crowdsourcinggeographicknowledge(pp.105-122).Berlin:

Springer.

Hallford,D.,&Mellor,D.(2013).Reminiscence-Basedtherapiesfordepression:Should

theybeusedonlywitholderadults?ClinicalPsychology:ScienceandPractice,20(4),

doi:452-468.10.1111/cpsp.12043

Hannan,R.,Thompson,R.,Worthington,A.,&Rooney,P.(2016).Thetriangleofcare

carersincluded:Aguidetobestpracticefordementiacare.London:CarersTrust.

194

Haywood,B.(2013).A"senseofplace"inpublicparticipationinscientificresearch.Science

Education,98(1),64-83.Retrieved

fromhttps://search.proquest.com/docview/1477785604.

Hussain,F.,&Raczka,R.(1997).Lifestoryworkforpeoplewithlearning

disabilities.BritishJournalofLearningDisabilities,25(2),73-76.doi:10.1111/j.1468-

3156.1997.tb00014.x

Higgins,J.P.T.,&Green,S.(2011).Cochranehandbookforsystematicreviewsof

interventions(5.1.0ed.)TheCochraneCollaboration.

HJHoldingsLLC(2014).storiesetc(Version2.1.1).Retrievedfrom

https://itunes.apple.com/us/app/stories-etc/id781353439?mt=8

Hsieh,C.J.,Chang,C.,SU,S.F.,Hsiao,Y.L.,Shih,Y.W.,Han,W.H.,&Lin,C.C.(2010).

Reminiscencegrouptherapyondepressionandapathyinnursinghomeresidents

withmildtomoderatedementia.JournalofExperimentalClinicalMedicine,2(2),72-

78.doi:https://doi.org/10.1016/S1878-3317(10)60012-5

Huang,H.,Chen,Y.,Chen,P.,Huey-LanHu,S.,Liu,F.,Kuo,Y.,&Chiu,H.(2015).

Reminiscencetherapyimprovescognitivefunctionsandreducesdepressive

symptomsinelderlypeoplewithdementia:Ameta-analysisofrandomizedcontrolled

trials.JournaloftheAmericanMedicalDirectorsAssociation,16(12),1087-1094.doi:

10.1016/j.jamda.2015.07.010.

Hughes,C.P.,Berg,L.,Danziger,W.L.,Coben,L.A.,&Martin,R.L.(1982).Anewclinical

scaleforthestagingofdementia.TheBritishJournalofPsychiatry,140(6),566-572.

doi:10.1192/bjp.140.6.566.

Hurt,C.,Bhattacharyya,S.,Burns,A.,Camus,V.,Liperoti,R.,Marriott,A.,...Byrne,E.J.

(2008).Patientandcaregiverperspectivesofqualityoflifeindementia.an

investigationoftherelationshiptobehaviouralandpsychologicalsymptomsin

dementia.DementiaandGeriatricCognitiveDisorders,26(2),138-146.Retrieved


Ito,T.,Meguro,K.,Akanuma,K.,Ishii,H.,&Mori,E.(2007).Arandomizedcontrolledtrialof

thegroupreminiscenceapproachinpatientswithvasculardementia.Dementiaand

GeriatricCognitiveDisorders,24(1),48-54.//doi.org/10.1159/000103631.

195

Jenkins,K.,&Stranaghan,A.(2010).Reminiscenceandacquiredbraininjury.SocialCare

andNeurodisability,1(2),14-21.doi:10.5042/scn.2010.042.

Jennett,C.,Cox,A.,MastracciL,D.,&Regalado,C.(2014).FromLondontotheArctic.

exploringengagementandlearningincitizencyberscience.VirtualCitizen,12(1),18-

20.Retrievedfromhttp://aglobalvillage.org/journal/issue12/virtualcitizen/jennett/.

Jennett,C.,Furniss,D.J.,Iacovides,I.,Wiseman,S.,Gould,S.J.J.,&Cox,A.L.(2014).

Exploringcitizenpsych-scienceandthemotivationsoferrordiaryvolunteers.Human

Computation,1(2).doi:10.15346/hc.v1i2.10.

Joddrell,P.,&Astell,A.(2017).Actodementia:Implementingaccessibilityoptionsfor

dementiainexistingtouchscreenapps[Abstract].Alzheimer'sandDementia,13(7)

P163.Doi:https://doi.org/10.1016/j.jalz.2017.06.2608

Joddrell,P.,Hernandez,A.,&Astell,A.(2016).Identifyingexisting,accessibletouchscreen

gamesforpeoplelivingwithdementia.InK.Miesenberger,C.Buhler&P.Penaz

(Eds.),Lecturenotesincomputerscience(pp.509-514).Switzerland:Springer

InternationalPublishing.

Joddrell,P.,&Astell,A.J.(2016).Studiesinvolvingpeoplewithdementiaandtouchscreen

technology:Aliteraturereview.JMIRRehabilitationandAssistiveTechnologies,3(2),

e10.10.doi:2196/rehab.5788.

Kellett,U.,Moyle,W.,McAllister,M.,King,C.,&Gallagher,F.(2010).Lifestoriesand

biography:Ameansofconnectingfamilyandstafftopeoplewithdementia.Journalof

ClinicalNursing,19(11-12),1707-1715.doi:https://0-

dx.doi.org.unicat.bangor.ac.uk/10.1111/j.1365-2702.2009.03116.x

Kerkhof,Y.,Bergsma,A.,Graff,M.,&Dröes,R.M.(2017).Selectingappsforpeoplewith

milddementia:Identifyinguserrequirementsforappsenablingmeaningfulactivities

andself-management.JournalofRehabilitationandAssistiveTechnologies

Engineering,4(1).doi:10.1177/2055668317710593.

Kerpershoek,L.,deVugt,M.,Wolfs,C.,Woods,B.,Jelley,H.,Orrell,M.,...Verhey,F.(2017).

Needsandqualityoflifeofpeoplewithmiddle-stagedementiaandtheirfamilycarers

fromtheEuropeanActifcarestudy.Wheninformalcarealonemaynotsuffice.Aging&

MentalHealth,1-6.doi:10.1080/13607863.2017.1390732.

196

Kerssens,C.,Kumar,R.,Adams,A.E.,Knott,C.C.,Matalenas,L.,Sanford,J.A.,&Rogers,W.

A.(2015).Personalizedtechnologytosupportolderadultswithandwithoutcognitive

impairmentlivingathome.AmericanJournalofAlzheimer'sDisease&Other

Dementias,30(1),85-97.doi:10.1177/1533317514568338.

Kiernat,J.M.(1979).Theuseoflifereviewactivitywithconfusednursinghome

residents.AmericanJournalofOccupationalTherapy,33(5),306-310.

Kim,E.S.,Cleary,S.J.,Hopper,T.,Bayles,K.A.,Mahendra,N.,Azuma,T.,&Rackley,A.

(2006).Evidence-basedpracticerecommendationsforworkingwithindividualswith

dementia:Groupreminiscencetherapy.JournalofMedicalSpeech-Language

Pathology,14(3),xxxiv.Retrievedfromhttps://www.questia.com/article/1G1-

151704911/evidence-based-practice-recommendations-for-working.

Kindell,J.,Burrow,S.,Wilkinson,R.,&Keady,J.D.(2014).Lifestoryresourcesindementia

care:Areview.QualityinAgeingandOlderAdults,15(3),151-161.doi:

https://doi.org/10.1108/QAOA-02-2014-0003.

King,A.C.,Winter,S.J.,Sheats,J.L.,Rosas,L.G.,Buman,M.P.,Salvo,D,...Dommarco,J.R.

(2016).Leveragingcitizenscienceandinformationtechnologyforpopulationphysical

activitypromotion.TranslationalJournaloftheAmericanCollegeofSports

Medicine,1(1),10-41.Retrievedfrom

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4978140/.

Kitwood,T.(1988).Thetechnical,thepersonal,andtheframingofdementia.Social

Behaviour,3(1),161-179.

Kitwood,T.M.(1993).Towardsatheoryofdementiacare:Theinterpersonal

process.AgeingandSociety,13(1),51-67.doi:10.1017/S0144686X00000647.

Kitwood,T.M.(1997).Dementiareconsidered:Thepersoncomesfirst.Buckingham

England/Philadelphia:OpenUniversityPress.

Kwon,M.,Cho,B.,&Lee,J.(2013).Reminiscencetherapyfordementia–Meta

analysis.HealthcareandNursing,40(1),10-15.Retrieved

fromhttps://pdfs.semanticscholar.org/c391/b0b1a893a4416f5bbb024b24d9927257

b160.pdf

197

Lai,C.K.Y.,Chi,I.,&Kayser-Jones,J.(2004).Arandomisedcontrolledtrialofaspecific

reminiscenceapproachtopromotethewell-beingofnursinghomeresidentswith

dementia.InternationalPsychogeriatrics,16(1),33-49.

Lancaster,K.(1966).Anewapproachtoconsumertheory.JournalofPolitical

Economy,74(2),132-57.

Landis,J.R.,&Koch,G.G.(1977).Themeasurementofobserveragreementforcategorical

data.Biometrics,33(1),159-174.Retrieved

fromhttp://www.jstor.org/stable/2529310.

Lawrence,V.,Fossey,J.,Ballard,C.,Moniz-Cook,E.,&Murray,J.(2012).Improvingquality

oflifeforpeoplewithdementiaincarehomes:Makingpsychosocialinterventions

work.TheBritishJournalofPsychiatry,201(5),344-351.doi:https//0-

dx.doi.org.unicat.bangor.ac.uk/10.1192/bjp.bp.111.101402.

Leung,P.(2010).Autobiographicaltimeline:Anarrativeandlifestoryapproachin

understandingmeaning-makingincancerpatients.Illness,Crisis&Loss,18(2),111-

127.doi:10.2190/IL.18.2.c

Lewis,F.,Schaffer,S.K.,Sussex,J.,O'Neill,P.,&Cockcroft,L.(2014).Thetrajectoryof

dementiaintheUK–makingadifference.OHEConsulting.Retrieved

fromhttps://www.alzheimersresearchuk.org/wp-content/uploads/2015/01/OHE-

report-Full.pdf

LifeBioStudio(2015).LifeBioStudio(Version1.8).Retrievedfrom

https://itunes.apple.com/us/app/lifebio-studio/id725323014?mt=8

LifelinkedLtd(2016).Storii–MomentsThatMatter(Version1.3.4).[Mobileapplication

software].Retrievedfromhttps://storii.com

Lim,F.S.,Wallace,T.,Luszcz,M.A.,&Reynolds,K.J.(2013).Usabilityoftabletcomputers

bypeoplewithearly-stagedementia.Gerontology,59(2),174-182.doi:

10.1159/000343986.

Logsdon,R.G.,Gibbons,L.E.,McCurry,S.M.,&Teri,L.(2002).Assessingqualityoflifein

olderadultswithcognitiveimpairment.PsychosomaticMedicine,64(3),510-519.doi:

10.1097/00006842-200205000-00016.

Long,T.,&Johnson,M.(2000).Rigour,reliabilityandvalidityinqualitative

research.ClinicalEffectivenessinNursing,4(1),30-37.10.1054/cein.2000.0106

198

Ludwin,K.,&Capstick,A.(2015).Usingparticipatoryvideotounderstanddiversityamong

peoplewithdementiainlong-termcare.JournalofPsychologicalIssuesin

OrganizationalCulture,5(4),30-38.Retrievedfromhttp://0-

search.proquest.com.unicat.bangor.ac.uk/docview/1676369026?accountid=14874.

Lynch,S.,Reilly,E.,Lowe,F.,Rhoda,J.,&McCarron,M.(2016).232creatinglifestories

throughdigitaltechnologyasameansofsupportingperson-centred,relationship

basedcareacrossthecontinuumofdementia.AgeandAgeing,45(suppl2),ii12.

Massimi,M.,Berry,E.,Browne,G.,Smyth,G.,Watson,P.,&Baecker,R.M.(2008).An

exploratorycasestudyoftheimpactofambientbiographicaldisplaysonidentityina

patientwithalzheimer'sdisease.NeuropsychologicalRehabilitation,18(5),742-765.

doi:10.1080/09602010802130924.

McCormack,B.(2004)Person-centrednessingerontologicalnursing:anoverviewofthe

literature.InternationalJournalofOlderPeopleNursing.13,3a,31-38.

McIntosh,E.,&Ryan,M.(2002).Usingdiscretechoiceexperimentstoderivewelfare

estimatesfortheprovisionofelectivesurgery:Implicationsofdiscontinuous

preferences.JournalofEconomicPsychology,23(3),367-382.doi:10.1016/S0167-

4870(02)00081-8.

McKeown,J.,Gridley,K.,&Savitch,N.(2017).Identifyingandovercomingchallengesinlife

storywork.InP.Kaiser,&R.Eley(Eds.),Lifestoryworkforpeoplewithdementia:

Ordinarylives,extraordinarypeople(pp.200-211).Philadelphia/London:Jessica

KingsleyPublishers.

McKeown,J.,Clarke,A.,Ingleton,C.,Ryan,T.,&Repper,J.(2010).Theuseoflifestorywork

withpeoplewithdementiatoenhanceperson-centredcare.InternationalJournalof

OlderPeopleNursing,5(2),148-158.doi:https//0-

dx.doi.org.unicat.bangor.ac.uk/10.1111/j.1748-3743.2010.00219.x.

McKeown,J.,Clarke,A.,&Repper,J.(2006).Lifestoryworkinhealthandsocialcare:

Systematicliteraturereview.JournalofAdvancedNursing,55(2),237-247.doi:

10.1111/j.1365-2648.2006.03897.x

McKinney,A.(2017).Thevalueoflifestoryworkforstaff,peoplewithdementiaand

familymembers.NursingOlderPeople,29(5),25.doi:10.7748/nop.2017.e899.

199

MedicalResearchCouncil(2008)DevelopingandEvaluatingComplexInterventions:New

Guidance.MedicalResearchCouncil:London.

Melendez,J.C.,Torres,M.,Redondo,R.,Mayordomo,T.,&Sales,A.(2015).Effectivenessof

follow-upreminiscencetherapyonautobiographicalmemoryinpathological

ageing.InternationalJournalofPsychology,52(4),283-290.doi:

https//doi.org/10.1002/ijop.12217.

Middleton,D.,&Hewitt,H.L.(1999).Rememberingassocialpractice:Identityandlife

storyworkintransitionsofcareforpeoplewithprofoundlearning

disabilities.NarrativeInquiry,9(1),97-121.10.1075/ni.9.1.06mid

Milton,S.(2017).Whatlifestoryworkmeansforpeoplelivingwithdementia.InP.Kaiser,

&R.Eley(Eds.),Lifestoryworkwithpeoplewithdementia,ordinarylives,extraordinary

people(pp.98-109).London/Philadelphia:JessicaKingsleyPublishers.

MindMateLtd(2017).MindMate(Version4.0)[Mobileapplicationsoftware].Retrieved

fromhttps://itunes.apple.com/us/app/mindmate-healthy-

aging/id1030422375?mt=8

Mohs,R.(2000).Neuropsychologicalassessmentofpatientswithalzheimer’sdisease.InF.

E.Bloom,&D.J.Kupfer(Eds.),Psychopharmacology:4thgenerationofprogress.New

York:RavenPress.Retrieved

fromhttps://www.acnp.org/publications/psycho4generation.aspx.

Morgan,S.,&Woods,R.T.(2012).Lifereviewwithpeoplewithdementiaincarehomes:A

preliminaryrandomisedcontrolledtrial.Dementia:Non-Pharmacological

Therapies,1(1),43-59.

Morgan,S.(2000).Theimpactofastructuredlifereviewprocessonpeoplewithmemory

problemslivingincarehomesAvailablefromDissertations&ThesesEuropeFullText:

Science&Technology.Retrieved

fromhttps://search.proquest.com/docview/1796352653.

Morris,R.G.(1994).Recentdevelopmentsintheneuropsychologyof

dementia.InternationalReviewofPsychiatry,6(1),85-107.doi:

10.3109/09540269409025245.

Mulvenna,M.,Gibson,A.,McCauley,C.,Ryan,A.,Bond,R.,Laird,L.,...Ferry,F.(2017,

September).Behaviouralusageanalysisofareminiscingappforpeoplelivingwith

200

dementiaandtheircarers.PaperpresentedattheEuropeanConferenceonCognitive

Ergonomics2017,Umea,Sweeden.ACMDigitalLibrary.doi:

10.1145/3121283.3121289.

Murphy,C.(2000).Crackin’lives:Anevaluationofalifestory-bookprojecttoassistpatients

fromalongstaypsychiatrichospitalintheirmovetocommunitycaresituations.

DementiaServicesDevelopmentCentre,Stirling.

NationalInstituteforHealthandCareExcellence.(2018).Dementia:Assessment,

managementandsupportforpeoplelivingwithdementiaandtheircarers:Draft

consultation.UK:NationalInstituteforHealthandCareExcellence.

NICE-SCIE.(2007).ANICE–SCIEguidelineonsupportingpeoplewithdementiaandtheir

carersinhealthandsocialcare.London:BritishPsychologicalSociety/RoyalCollegeof

Psychiatrists.

Nolan,M.R.,Davies,S.,Brown,J.,Keady,J.,&Nolan,J.(2004)Beyond‘person-centred’

care:anewvisionforgerontologicalnursing.InternationalJournalofOlderPeople

Nursing.13(3a),45-53

Nolan,M.,Davies,S.,&Brown,J.(2006)Transitionsincarehomes:towardsrelationship-

centredcareusingthe‘SensesFramework’",QualityinAgeingandOlderAdults,7(3),

5–14.http://dx.doi.org/10.1108/14717794200600015

Nolan,M.,Ryan,T.,Enderby,P.,&Reid,D.(2002).Towardsamoreinclusivevisionof

dementiacarepracticeandresearch.Dementia,1(2),193-211.doi:

10.1177/147130120200100206.

Norris,A.D.(1986).Reminiscencewithelderlypeople.London:Winslow.

NorthCarolinaKingTidesProject[online]http://nckingtides.web.unc.edu.(Accessed21

August2017).

Orme,B.K.(2010).Gettingstartedwithconjointanalysis(2ed.).Madison,Wisconsin:

ResearchPubl.

O'Shea,E.,Devane,D.,Cooney,A.,Casey,D.,Jordan,F.,Hunter,A.,...Murphy,K.(2014).

Theimpactofreminiscenceonthequalityoflifeofresidentswithdementiainlong-

staycare.InternationalJournalofGeriatricPsychiatry,29(10),1062-1070.doi:

10.1002/gps.4099.

201

PaceUniversity&WestchesterSmartMobileAppBowl(2018).Membook(Version1.0).

Retrievedfrom

https://play.google.com/store/apps/details?id=com.kodingkidz.alzhelp

Pattie,A.H.,&Gilleard,C.J.(1979).ManualoftheCliftonassessmentproceduresforthe

elderly(CAPE).Sevenoaks:Hodder&StoughtonEducational.Retrieved

fromhttp://data.theeuropeanlibrary.org/BibliographicResource/3000086623369.

Perro,J.(2017)‘MobileApps:What’sAGoodRetentionRate?’Localytics[online]21

March.http://info.localytics.com/blog/mobile-apps-whats-a-good-retention-rate

(Accessed21September2017)

Phillips,K.A.,Maddala,T.,&Johnson,F.R.(2002).Measuringpreferencesforhealthcare

interventionsusingconjointanalysis:AnapplicationtoHIVtesting.HealthServices

Research,37(6),1681-1705.doi:10.1111/1475-6773.01115.

Pinquart,M.,Duberstein,P.R.,&Lyness,J.M.(2007).Effectsofpsychotherapyandother

behavioralinterventionsonclinicallydepressedolderadults:Ameta-analysis.Aging&

MentalHealth,11(6),645-657.doi:10.1080/13607860701529635.

Pot,A.M.,Bohlmeijer,E.T.,Onrust,S.,Melenhorst,A.S.,Veerbeek,M.,&De,V.I.(2010).

Theimpactoflifereviewondepressioninolderadults:Arandomizedcontrolled

trial.InternationalPsychogeriatrics,22(4),572-581.doi:

//doi.org/10.1017/S104161020999175X.

Rothstein,M.A.,Wilbanks,J.T.,&Brothers,K.B.(2015).Citizenscienceonyour

smartphone:AnELSIresearchagenda.TheJournalofLaw,Medicine&Ethics,43(4),

897-903.doi:10.1111/jlme.12327.

Roy,H.E.,Pocock,M.J.O.,Preston,C.D.,Roy,D.B.,Savage,J.,Tweddle,J.C.&Robinson,L.D.

(2012).Understandingcitizenscienceandenvironmentalmonitoring.Finalreporton

behalfofUKEnvironmentalObservationFramework.Bristol:NERCCentreforEcology

&HydrologyandNaturalHistoryMuseum

RoyalCollegeofNursing(2011),DignityinDementia;TransformingGeneralHospitalCare

Project.

Russell,C.,&Timmons,S.(2009).Lifestoryworkandnursinghomeresidentswith

dementia.NursingOlderPeople,21(4),28-32.Retrieved


202

Ryan,A.,Bunting,B.,Mulvenna,M.,Curran,K.,Laird,L.,McCauley,C.,...Bond,R.(2017).

(2017).Astrengthsbasedapproachinastudyoffacilitatedreminiscence.Paper

presentedatthe18thNursingEthicConference&3rdInternationalEthicsinCare

Conference,Leuven,Belgium.Retrievedfrom

http://uir.ulster.ac.uk/38661/2/KU%20Leuven%20conference-book-nursing-

ethics.pdf

SaveFamilyPhotos(2017).WeGather(Version1.2).Retrievedfrom

https://play.google.com/store/apps/details?id=com.savefamilyphotos.app

SageBionetworks.(2015).Sharethejourney:Mind,body,andwellnessafterbreastcancer.

Retrievedfromhttp://sharethejourneyapp.org(Accessed20August2017)

SageBionetworks.(2017).ParkinsonmPowerstudyappRetrieved

fromhttp://sagebase.org/mhealth-studies/parkinson-m-power/(Accessed20

August2017)

Särkämö,T.,Tervaniemi,M.,Laitinen,S.,Numminen,A.,Kurki,M.,Johnson,J.K.,&

Rantanen,P.(2013).Cognitive,emotionalandsocialbenefitsofregularmusical

activitiesinearlydementia:Randomisedcontrolledstudy.TheGerontologist,54(4),

634-650.doi:10.1093/geront/gnt100.

Sarne-Fleischmann,V.,&Tractinsky,N.(2008).Developmentandevaluationofa

personalisedmultimediasystemforreminiscencetherapyinalzheimer's

patients.InternationalJournalofSocialHumanisticComputing,1(1),81-96.Retrieved

fromhttp://0-

search.proquest.com.unicat.bangor.ac.uk/docview/35887996?accountid=14874

Schweitzer,P.,&Bruce,E.(2008).Rememberingyesterday,caringtoday.London:Jessica

KingsleyPublishers.

ScottishDementiaWorkingGroupResearchSub-Group.(2014).Coreprinciplesfor

involvingpeoplewithdementiainresearch:Innovativepractice.Dementia,13(5),

680-685.doi:10.1177/1471301214533255.

Smith,K.L.,Crete-Nishihata,M.,Damianakis,T.,Baecker,R.M.,&Marziali,E.(2009).

Multimediabiographies:Areminiscenceandsocialstimulustoolforpersonswith

cognitiveimpairment.JournalofTechnologyinHumanServices,27(4),287-306.doi:

10.1080/15228830903329831.

203

SocientizeConsortium.(2013).Greenpaperoncitizenscience.CitizenscienceforEurope.

towardsabettersocietyofempoweredcitizensandenhancedresearch.

Brussels:EuropeanCommission.

Soltys,F.,&Coats,L.(1994).TheSolCosmodel:Facilitatingreminiscencetherapy.Journal

ofGerontologicalNursing,20(1),11-16.

StandandStareLtd(2017).TangibleMemories(Version2.0).Retrievedfrom

https://itunes.apple.com/gb/app/tangible-memories-story-creator/id1006573343

Stenhouse,R.,Tait,J.,Hardy,P.,&Sumner,T.(2013).Danglingconversations:Reflections

ontheprocessofcreatingdigitalstoriesduringaworkshopwithpeoplewithearly-

stagedementia.JournalofPsychiatricandMentalHealthNursing,20(2),134-141.doi:

10.1111/j.1365-2850.2012.01900.x

Stewart-Brown,S.,Tennant,A.,Tennant,R.,Platt,S.,Parkinson,J.,&Weich,S.(2009).

InternalconstructvalidityoftheWarwick-Edinburghmentalwell-beingscale

(WEMWBS):ARaschanalysisusingdatafromtheScottishhealtheducation

populationsurvey.HealthandQualityofLifeOutcomes,7(1),15.doi:10.1186/1477-

7525-7-15.

Subramaniam,P.,Woods,B.,&Whitaker,C.(2013).Lifereviewandlifestorybooksfor

peoplewithmildtomoderatedementia:Arandomisedcontrolledtrial.Aging&

MentalHealth,18(3),363-375.doi:

https//dx.doi.org/10.1080%2F13607863.2013.837144

Subramaniam,P.,&Woods,B.(2010).Towardsthetherapeuticuseofinformationand

communicationtechnologyinreminiscenceworkforpeoplewithdementia:A

systematicreview.InternationalJournalofComputersinHealthcare,1(2),106-125.

doi:10.1504/IJCIH.2010.037457

Subramaniam,P.,&Woods,B.(2012).Theimpactofindividualreminiscencetherapyfor

peoplewithdementia:Systematicreview.ExpertReviewofNeurotherapeutics,12(5),

545-555.doi:https//0dx.doi.org.unicat.bangor.ac.uk/10.1586/ern.12.35.

Subramaniam,P.,&Woods,B.(2016).Digitallifestorybooksforpeoplewithdementia

livingincarehomes:Anevaluation.ClinicalInterventionsinAging,11,1263-1276.doi:

10.2147/CIA.S111097.

204

TadakaE&Kanagawa,K.(2007a).Effectsofreminiscencegroupinelderlypeoplewith

alzheimerdiseaseandvasculardementiainacommunitysetting.Geriatrics&

GerontologyInternational,7(2),167-173.doi:10.1111/j.1447-0594.2007.00381.x

TadakaE&Kanagawa,K.(2007b).Effectsofreminiscencegroupinelderlypeoplewith

alzheimerdiseaseandvasculardementiainacommunitysetting.Geriatrics&

GerontologyInternational,7(2),167-173.doi:10.1111/j.1447-0594.2007.00381.x

Testad,I.,Corbett,A.,Aarsland,D.,Lexow,K.O.,Fossey,J.,Woods,B.,&Ballard,C.(2014a).

Thevalueofpersonalizedpsychosocialinterventionstoaddressbehavioraland

psychologicalsymptomsinpeoplewithdementialivingincarehomesettings:A

systematicreview.InternationalPsychogeriatrics/IPA,26(7),1083.doi:

10.1017/S1041610214000131.

Thorgrimsen,L.,Schweitzer,P.,&Orrell,M.(2002).Evaluatingreminiscenceforpeople

withdementia:Apilotstudy.TheArtsinPsychotherapy,29(1),93-97.doi:

https//dx.doi.org/10.1016/S0197-4556(01)00135-6.

Tresolini,C.P.&thePew-FetzerTaskForce(1994)HealthProfessionalsEducationand

Relationship-centredCare:AreportofthePew-FetzerTaskForceonAdvancing

PsychosocialEducation.PewHealthProfessionsCommission,SanFrancisco.

Tyack,C.,&Camic,P.M.(2017).Touchscreeninterventionsandthewell-beingofpeople

withdementiaandcaregivers:Asystematicreview.International

Psychogeriatrics,29(8),1261-1280.doi:10.1017/S1041610217000667.

VanBogaert,P.,Tolson,D.,Eerlingen,R.,Carvers,D.,Wouters,K.,Paque,K.,...&

Engelborghs,S.(2016).SolCosmodel-basedindividualreminiscenceforolderadults

withmildtomoderatedementiainnursinghomes:Arandomizedcontrolled

interventionstudy.JournalofPsychiatricandMentalHealthNursing,23(9-10),568-

575.doi:10.1111/jpm.12336.

VanPuyenbroeck,J.,&Maes,B.(2008).Areviewofcritical,person-centredandclinical

approachestoreminiscenceworkforpeoplewithintellectual

disabilities.InternationalJournalofDisability,DevelopmentandEducation,55(1),43-

60.10.1080/10349120701827979

205

Wandke,H.,Sengpiel,M.,&Sönksen,M.(2012).Mythsaboutolderpeople'suseof

informationandcommunicationtechnology.Gerontology,58(6),564-570.doi:

10.1159/000339104.

Westerhof,G.J.,Bohlmeijer,E.,&Webster,J.D.(2010).Reminiscenceandmentalhealth:A

reviewofrecentprogressintheory,researchandinterventions.Ageingand

Society,30(4),697-721.Retrievedfromhttp://purl.utwente.nl/publications/86419.

Wiggins,A.,&Crownston,K.(2011).(2011).Fromconversationtocrowdsourcing:A

typologyofcitizenscience.PaperpresentedattheInternationalConferenceonSystem

Sciences,Hawaii.doi:10.1109/HICSS.2011.207

Willis,R.,&Holland,S.(2009).Lifestoryworkreflectionsontheexperiencebylooked

afteryoungpeople.Adoption&FosteringJournal,33(4),44-52.

10.1177/030857590903300406

Woods,B.,Aguirre,E.,Spector,A.E.,&Orrell,M.(2012).Cognitivestimulationtoimprove

cognitivefunctioninginpeoplewithdementia.CochraneDatabaseofSystematic

Reviews,1(2).doi:https//doi.org/10.1002/14651858.CD005562.pub2

Woods,B.,Spector,A.,Jones,C.,Orrell,M.,&Davies,S.(2005).Reminiscencetherapyfor

dementia.TheCochraneDatabaseofSystematicReviews,(2),CD001120.doi:

10.1002/14651858.CD001120.pub2.

Woods,R.T.,Bruce,E.,Edwards,R.T.,Elvish,R.,Hoare,Z.,Hounsome,B.,...Russell,I.T.

(2012).REMCARE:Reminiscencegroupsforpeoplewithdementiaandtheirfamily

caregivers-effectivenessandcost-effectivenesspragmaticmulticentrerandomised

trial.HealthTechnologyAssessment(Winchester,England),16(48),116.doi:

10.3310/hta16480.

Woods,B.&Russell,I.(2014)Randomisationandchance-baseddesignsinsocialcare

research.NIHRSchoolforSocialCareResearchMethodsReview17.SchoolforSocial

CareResearch.London

Woods,B,&Subramaniam,P.(2017).Theevidencebaseforlifestoryworksofar.InP.

Kaiser,&R.Eley(Eds.),Lifestoryworkwithpeoplewithdementia:Ordinarylives,

extraordinarypeople(pp.83-96).London/Philadelphia:JessicaKingsleyPublishers.

WorldDementiaCouncil[online]https://worlddementiacouncil.org/our-work/our-

vision-and-mission(Accessed21September2017).

206

WorldHealthOrganization.(2015).FirstWHOministerialconferenceonglobalaction

againstdementia:Meetingreport,WHOheadquarters,Geneva,Switzerland,16-17

March2015WorldHealthOrganization.Retrieved

fromhttp://www.who.int/iris/handle/10665/179537

Yamagami,T.,Takayama,Y.,Maki,Y.,&Yamaguchi,H.(2012).Arandomizedcontrolled

trialofbrain-activatingrehabilitationforelderlyparticipantswithdementiain

residentialcarehomes.DementiaandGeriatricCognitiveDisordersExtra,2(1),372-

380.doi:https//dx.doi.org/10.1159%2F000342614

207

Appendix

AppendixA:Ethicalapprovalletters

ApprovalletterfollowingapplicationtodotheworkcarriedoutinChapter2.

209

Approvalletterfollowingapplicationforsubstantialamendmenttoincludequalitative

interviewinginpeople’shomes(Chapter3),andtheworkdetailedinChapter4.

210

Approvalletterfollowingapplicationforsubstantialamendmenttoincludefollow-up

interviewswithparticipantsinChapter4,andtheworkdetailedinChapters5and6.

211

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;

212

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!

215

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?



Ifyoudecidetotakepart,wehopethatthismaybeofsomehelptoyou,andpreviousresearchhas indeedsuggestedthatusingthedigital lifestorybook isanenjoyableexperience.Forallparticipants, the informationweget fromthisstudymayhelpustobettertreatpeoplewithmemorydifficultiesinthefuture.


Yes.Allinformationcollectedaboutyouandyourrelativeduringthecourseofthestudywillbekept strictly confidential. All datawill be stored under secure conditions andwill be storedseparatelyfromidentifyingdetails.Onlytheresearchersinvolvedinthestudywillhaveaccesstothisdata.Yourlifestorybookwillbepasswordprotectedsothatonlyyouandyourrelativehaveaccesstoit.WhatwillhappenifIdon’twanttocarryonwiththestudy?


217


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



ThisresearchisfundedasaKnowledgeEconomySkills(KESS)Scholarship.Thisschemeispartfundedby theWelshGovernment’sEuropeanSocialFund (ESF) convergenceprogramme forWestWalesandtheValleys.Thisfundingcoverstherunningcostsoftheresearchprojectwhichisbeing ledbyLauraO’Philbin(Mastersstudent)andsupervisedbyProfessorBobWoods,aclinicalpsychologistatBangorUniversity.Whatwillhappentotheresultsoftheresearch?

Theresultsoftheresearchwillbepublishedinjournals,presentedatconferencesandformpartofaMastersthesis.Noparticipantswillbeidentifiedinanypublicationarisingfromthestudy,withouttheirwrittenconsent.Wewillmakearrangementsforparticipantstobeinformedofthefindingsofthestudywheredesired.Whohasreviewedthestudy?



Formoreinformationaboutthisresearch,pleasecontact:MsLauraO’PhilbinorProfessorBobWoods

Tel:01248383188Tel:01248383719Email:[email protected]@bangor.ac.uk

DementiaServicesDevelopmentCentre

BangorUniversity,Ardudwy,HolyheadRoad,BangorLL572PX

Thankyouforconsideringtakingpartinthisresearchstudy

218

STAFFMEMBERINFORMATIONSHEET

WhatarethebenefitsofDigitalLifeStorybooks?

Invitationtoparticipateinaresearchstudy

WeinviteyouasastaffmemberofadementiacarehometotakepartinaresearchinvestigationasyouhavecompletedtrainingsessionswithBookOfYou.Beforeyoudecidetotakepart,itisimportantthatyouunderstandwhytheresearchisbeingconductedandwhatwillberequiredofyoushouldyouagreetobeinvolved.Pleasetaketimetoreadthefollowinginformationanddiscussitwithothersifyouwish.Askusifthereisanythingthatisnotclearorifyourequirefurtherinformationaboutthestudy.Taketimetodecidewhetherornotyouwishtotakepart.


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.




Ifyoudecidetotakepart,wehopethatthismaybeofsomehelptoyou,andpreviousresearchhas indeed suggested thatusing thedigital life storybook is anenjoyableexperience. Forallparticipants, the informationweget fromthisstudymayhelpustobettertreatpeoplewithdementiainthefuture.


Yes.Allinformationcollectedaboutyouandthepersonyoucareforduringthecourseofthestudywillbekeptstrictlyconfidential.Alldatawillbestoredundersecureconditionsandwillbestoredseparatelyfromidentifyingdetails.Onlytheresearchersinvolvedinthestudywillhaveaccesstothisdata.WhatwillhappenifIdon’twanttocarryonwiththestudy?



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


220


ThisresearchisfundedasaKnowledgeEconomySkills(KESS)Scholarship.Thisschemeispartfundedby theWelshGovernment’sEuropeanSocialFund (ESF) convergenceprogramme forWestWalesandtheValleys.Thisfundingcoverstherunningcostsoftheresearchprojectwhichisbeing ledbyLauraO’Philbin(Mastersstudent)andsupervisedbyProfessorBobWoods,aclinicalpsychologistatBangorUniversity.Whatwillhappentotheresultsoftheresearch?

Theresultsoftheresearchwillbepublishedinjournals,presentedatconferencesandformpartofaMastersthesis.Noparticipantswillbeidentifiedinanypublicationarisingfromthestudy,withouttheirwrittenconsent.Wewillmakearrangementsforparticipantstobeinformedofthefindingsofthestudywheredesired.Whohasreviewedthestudy?



Formoreinformationaboutthisresearch,pleasecontact:MsLauraO’PhilbinorProfessorBobWoods

Tel:01248383188Tel:01248383719Email:[email protected]@bangor.ac.uk

DementiaServicesDevelopmentCentre

BangorUniversity,Ardudwy,HolyheadRoad,BangorLL572PX

Thankyouforconsideringtakingpartinthisresearchstudy!

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

223

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?

224

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

225

AppendixG.InformationSheetpertainingtoChapter4(Phase1:DCBYApp)

PARTICIPANT INFORMATION SHEET


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


Ifyoudecidetotakepart,wehopethatthismaybeofsomehelptoyou,andpreviousresearchhasindeedsuggestedthatusingthedigitallifestorybookisanenjoyableexperienceandmayhaveapositiveeffectonwell-being.Forallparticipants,theinformationwegetfromthisstudymayhelpustobettertreatpeoplewithmemorydifficultiesinthefuture.


Yes.Allinformationcollectedaboutyouandyourrelativeduringthecourseofthestudywillbekeptstrictlyconfidential.Yourlifestorybookwillonlybeavailableonyourpersonaldevice.Wewillnothaveaccesstothecontentofyourlifestorybookandwewillnotstoreanyidentifyinginformationaboutyou.

WhatwillhappenifIdon’twanttocarryonwiththestudy?



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


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

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

238

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.

239

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

240

IfyouwouldlikeanymoreinformationaboutthisstudypleasecontactMsLauraO’Philbinl.o-philbin@bangor.ac.ukDementiaServicesDevelopmentCentreBangorUniversityArdudwyHolyheadRoad,Bangor,LL572PX

241

AppendixN.InformationsheetspertainingtoChapter6

PARTICIPANTINFORMATIONSHEET


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.

242


Somepeoplemayfinditalittletiring.Thereviewdoesnotneedtobelongandyoucanwithdrawatanytimewithoutgivingareason.


Youwillbecontributingtoresearchthatwillhelplifestoryworkservicesprovidebetterservicestopeoplewithmemoryproblemsandtheircaregivers.Asasmalltokenofappreciationwewillsendyoua€10TescoorMarksandSpencervoucherifyoucompletetheresearch.Ifyouwish,youcanbenamedasanauthoronthepaper.


Youcankeepyournameandinformationprivateifyouwish.Ifyoudon’twantyourinformationtobekeptprivatewecanaddyouasanauthoronthepaper.

WhatwillhappenifIdon’twanttocarryonwiththestudy?

Youwillbefreetowithdrawfromthestudyatanytime,withoutgivingareason.


Ifyouneedassistanceorhaveaqueryaboutanyaspectofyourparticipation,youcancontacttheresearcher,LauraO’Philbin.Herdetailsareatthebottomofthispage.Ifyouareunhappyordissatisfiedaboutanyaspectofyourparticipation,wewouldaskyoutotellusaboutthisinthefirstinstance,sothatwecantrytoresolveanyconcernsandfindasolution.Anycomplaintwillbefullyaddressed.PleaseaddressyourcomplainttotheManageroftheSchoolofHealthcareSciences:DrHuwRoberts,FronHeulog,BangorUniversity,BangorLL572EF.Tel:01248383136E-mail:[email protected]


ThisresearchisfundedasaKnowledgeEconomySkills(KESS)Scholarship.ThisfundingcoverstherunningcostsoftheresearchprojectwhichisbeingledbyLauraO’Philbin(PhDStudent)andsupervisedbyProfessorBobWoods,aclinicalpsychologistatBangorUniversity.

243

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.

246

AppendixO.GuidanceprovidedtoappreviewersinChapter7

• Isitclearwhatyouhavetodoontheapp?

• Howisittouse?

• Howcleararethecolours/textsize?

• Isthereanythingyoulikeabouttheapp?

• Isthereanythingyoudon’tlikeaboutapp?

• Isthereanythingyouwouldchangeabouttheapp?

• Wouldyourecommendthisapptoafriend?

• Ifacaregiver:Wouldyouusethisappwithsomebodywithdementia?

247

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.

248

AppendixQ.AppEvaluationToolusedinChapter7.

bangor university doctor of philosophy reminiscence and ... · before turning to approaches that...

Documents