pact analysis and focus group reports · 0.2 18-07-2016 draft ioannis paliokas, votis konstandinos...

“ThisprojecthasreceivedfundingfromtheEuropeanUnion’sHorizon2020researchandinnovationprogrammeundergrantagreementNo690211”

DeliverableNumber:D.2.1,version:1

PACTAnalysisandFocusGroupReports

CAREGIVERSPRO-MMDPROJECT

Ref. Ares(2016)4020011 - 31/07/2016

<D2.1PACTAnalysisandFocusGroupReports>

CAREGIVERSPRO-MMD

<D2.1PACTAnalysisandFocusGroupReports:Page2of149

Documentinformation

ProjectNumber 690211 Acronym CAREGIVERSPRO-MMD

Fulltitle Self-managementinterventionsandmutualassistancecommunityservices,helpingPLWDwithdementiaandcaregiversconnectwithothersforevaluation,supportandinspirationtoimprovethecareexperience

Projectcoordinator UniversitatPolitècnicadeCatalunya-BarcelonaTechProf.UlisesCortés,[email protected]

ProjectURL http://www.caregiversprommd-project.eu

Deliverable Number D2.1 Title PACTAnalysisandFocusGroupReports

Workpackage Number 2 Title PlatformEnhancementandDesignAdaptation

Dateofdelivery Contractual Actual

Nature ReportþDemonstratorpOtherp

DisseminationLevel PublicþConsortiump

Keywords

Authors(Partner) IoannisPaliokas(CERTH/ITI),VotisKonstandinos(CERTH/ITI),CristianBarrué(UPC),FredTetard(MD),KevinPaulson(UHULL),ParaskeviZafeiridi(UHULL),RosieDunn(UHULL),DimitriosDaskalakis(QPL),AnastasiaMatonaki(QPL),FrancescaScocchera(COOS),JorgeRuizMoreno(FUB),XavierGironèsGarcía(FUB),IsabelleLandrin-Dutot(CHU-ROUEN),LaetitiaMalherbe(CHU-ROUEN)

ResponsibleAuthor VotisKonstandinos Email [email protected]

Partner CERTH/ITI Phone +302311257722


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DocumentVersionHistory

Version Date Status Author Description

0.1 11-05-2016 Draft IoannisPaliokas AbasicPACTanalysisstructure

0.2 18-07-2016 Draft IoannisPaliokas,VotisKonstandinos

PACT analysis and someinterviewreports

0.3 29-07-2016 Draft Ioannis Paliokas, FredTetard, ParaskeviZafeiridi, FrancescaScocchera, XavierGironès García,IsabelleLandrin-Dutot

All interview reports includedandcorrectionsonversion0.2

0.4 30-07-2016 Prefinal Ioannis Paliokas,CristianBarrué

Correctionson0.2version

0.5 31-07-2016 Final IoannisPaliokas Integrated and correctedversion


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Executivesummary

This is the first deliverable to be prepared in the WP2 regarding CAREGIVERSPRO-MMDplatformenhancement anddesign adaptation. It presents thePACTAnalysismethodologyand results, as well as the reports of the focus group interviews. Basic requirements areidentified to make the CAREGIVERSPRO-MMD platform a tool suitable for its end-users.Takingas inputthereportontheconditionsofMCIandtheabilitiesofpeopleaffectedbycognitivedecline touse theplatform(D1.1AccessibilityReport), thisdeliverablewill studyanddesignastrategyforactionstomaximizeaccessibility.

Mainly this report summarized work done in Task 2.1 (PACT Analysis and RequirementElicitation),butalsorelatestotheT2.2(GamificationService)inordertoreportbelievesandattitudesofendusersabouttheplantousegamificationprinciplesinthedesignofthenewCAREGIVERSPRO-MMDplatform.FocuswillbegiveninUserCentredDesign(UCD)andthusthefirstpartisdedicatedtotheoutlineofthegeneralUCDapproach.

Theinvolvementofusersineachstageofthedesignanddevelopmentprocessisseenasaparticularchallengeduetothelargescopeoftargetendusersthatneedtobeinvolved.Inthis direction, all user group categories have been involved in the platform design anddevelopmentprocess.Usergroups involved inthevalidationandactualtestingofthefinaloutcomes (later version of the CAREGIVERSPRO-MMD platform) are health professionals,caregivers,socialworkersandPLWDthemselves.PeopleLivingWithDementia(PLWD)andcaregivers appear as dyads as the minimal unit to consume services on offer by theCAREGIVERSPRO-MMDplatform.AsmallsampleoftheverysameusergroupsareinvolvedintheinterviewsrelatedtothePACTanalysis.

AftertheintroductiontothemethodstobeappliedintheplatformdevelopmenttoallowaUCDandUser Sensitive InclusiveDesignprocess, interview reports frompilot siteswill bemerged and summarized in the second part of the document. Those interviews wereperformed in order to identify design flows and new requirements. Initial results fromprocessingofenduser’sresponseswillleadtofunctionalityandcontentadaptation(T2.5).

In overall, D2.1 delivers requirements and guidelines needed to implement theCAREGIVERSPRO-MMD platform and help designers and developers to preparedemonstrationmaterialforusabilitystudyperformedinT5.1.


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ListofAcronyms

Acronym Title

AB AdvisoryBoard

CA ConsortiumAgreement

UCD UserCentredDesign

PLWD PeopleLivingWithDementia

PIA PrivacyImpactAssessment

DMP DataManagementPlan

ICT InformationandCommunicationTechnologies


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ListofTablesTable1.Emotional,cognitive,behavioralandphysicalsymptomsofburnoutinmedicalprofessionals[Peters,2015].........................................................................................................................................17Table2.Peopleanalysisoverviewandkey-pointsforDyadsandprofessionals....................................18Table3.ProposedTechniquesforincreasingmotivationperusercategory..........................................20Table4.PopularityofInternetactivitiesamongInternetusersineachgenerationandpercentagesofthosegenerationgroupsinthetotalpopulation[PewInternetSurveys-pewinternet.org]..................22Table5.Methodstoaddresssafetyandsecuritycriticalaspects(DataManagementPlaninD7.3,D7.7&D7.8)....................................................................................................................................................28Table6.Activitiesperusercategory......................................................................................................29Table7.AnalysisofContextandoverviewofkey-pointsforDyadsandprofessionals..........................32Table8.Examplesofnetworksforhealthcare[UpCity,2014]...............................................................34Table9.MajorTechnologyissues...........................................................................................................36Table10.ListofvideosusedasdemonstrationmaterialduringtheinterviewswithFocusGroups......39Table11.ListofdemouseraccountsusedfordemonstrationpurposesduringtheinterviewswithFocusGroups..........................................................................................................................................40Table12.Interviewparticipantsandusercategories............................................................................42Table13.CaregiversPRO-MMDScenariosforFocusGroupReports......................................................43Table14.ResponsesofPLWDintheusabilityquestionnaire...............................................................112Table15.Responsesofcaregiversintheusabilityquestionnaire........................................................116Table16.OnlineresourcesprofessionalsthinkthatcouldbeusefulforPLWDand/ortheircaregivers..............................................................................................................................................................120Table17.ResponsesofDoctorsandothermedicalprofessionalsintheusabilityquestionnaire.........121Table18.Acollectionofcommentsanddesignguidelinestoimproveplatformdesignaccordingtodoctor’srecommendations...................................................................................................................122Table19.ResponsesofSocialWorkersintheusabilityquestionnaire.................................................124

ListofFiguresFigure1.WP2ataglance........................................................................................................................9Figure2.UserneedsidentificationthroughatypicalPACTanalysisapproach......................................11Figure3.PACTanalysisoverview...........................................................................................................12Figure4.Mostpopularsocialnetworkingsitesbycountry[Source:WikipediaCommons]...................34Figure5.TheFocusGroupparticipants..................................................................................................37Figure6.AscreenshootoftheEnglishversionoftheProfilevideodemonstration...............................41Figure7.Spokenlanguagesstronglydependsonthesite’scountry....................................................110Figure8.Frequenciesofvisual,acoustic,ormotorImpairments.........................................................110Figure9.Responsesto‘Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldmotivatemetoparticipate’..................................................................................................................111Figure10.ResponsesofCaregiverstothequestion:‘WhatdoyouusetheInternetfor?’...................114Figure11.ClinicalactivitiesmedicalprofessionalsusetheInternetfor...............................................118Figure12.Popularwaysandmeansofcommunication:a)fordoctors,expertsandothersmedicalprofessionals(right)andb)forthedyads(left)....................................................................................119


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Tableofcontents

1 INTRODUCTION 91.1 PACTANALYSISMETHODOLOGY 10WHATISPACTANALYSIS 10WHENTOUSEAPACTANALYSIS 10

2 PACTANALYSISINCAREGIVERSPRO-MMD 112.1 INNOVATIONBEYONDTHESTATEOFTHEART 112.2 PEOPLE 12

2.2.1 DYADS(PEOPLEWITHNEUROCOGNITIVEDISORDERSANDTHEIRCAREGIVERS) 13PHYSICALASPECTS 14PSYCHOLOGICALASPECTS 14USAGEASPECTS 15BEHAVIOURALASPECTS 152.2.2 PROFESSIONALS 16PHYSICALASPECTS 16PSYCHOLOGICALASPECTS 16USAGEASPECTS 17BEHAVIOURALASPECTS 172.2.3 MOTIVATION 19SETPERSONALGOALS 21SETCOMMUNITYGOALS 21

2.3 ACTIVITIES 212.3.1 ACTIVITIESOFDYADS 23INFORMATIONANDCOMMUNICATIONACTIVITIES 23SOCIALIZATIONACTIVITIES 23DEVELOPMENTACTIVITIES 252.3.2 ACTIVITIESFORHEALTHPROFESSIONALS 252.3.3 TEMPORALASPECTS 262.3.4 SAFETYANDSECURITYISSUES 272.3.5 CONCLUSIONONACTIVITIES 29INFORMATION 29

2.4 CONTEXT 302.4.1 PHYSICALCONTEXT 312.4.2 SOCIALCONTEXT 312.4.3 ORGANIZATIONALCONTEXT 32

2.5 TECHNOLOGY 33

3 FOCUSGROUPS 363.1 INTRODUCTION 363.2 THEFOCUSGROUPAPPROACH 373.3 INTERVIEWPROTOCOL 383.4 DESCRIPTIONOFFOCUSGROUPSPARTICIPANTS 413.5 PERFORMEDSCENARIOSANDUSER’SACTIVITIES 433.6 CHU-ROUENREPORT 45


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3.6.1 INTRODUCTION 453.6.2 METHODOLOGY 453.6.3 DESCRIPTIONOFPARTICIPANTS 463.6.4 RESULTS 46PLWD 46DOCTORS 50SOCIALWORKERS 57

3.7 FUBREPORT 623.7.1 INTRODUCTION 623.7.2 METHODOLOGY 623.7.3 DESCRIPTIONOFPARTICIPANTS 643.7.4 RESULTS 643.7.5 CONCLUSIONS 75

3.8 UHULLREPORT 783.8.1 INTRODUCTION 783.8.2 METHODOLOGY 783.8.3 DESCRIPTIONOFPARTICIPANTS 793.8.4 RESULTS 79

3.9 COOSREPORT 953.9.1 INTRODUCTION 953.9.2 METHODOLOGY 953.9.3 DESCRIPTIONOFPARTICIPANTS 963.9.4 METHODOLOGY 963.9.5 DESCRIPTIONOFPARTICIPANTS 973.9.6 RESULTS 98

3.10 OVERALLINTERVIEWRESULTSANDADDITIONALREQUIREMENTS 109

4 COMPARISONBETWEENSITES 125

5 REFERENCES 126

ANNEXA-QUESTIONNAIRES 129


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1 IntroductionA typical PACT analysis approachwill be adopted tomeet theobjectives of the T2.1. Thismethodologywillbeused foranalysing theneedsandthepreferencesof theendusers inprojectionwiththeexistingplatformdesign.ThePACTanalysisresultsregardingpeopleandtheiractivitiesintotheplatformwillbeinterpretedintodesignguidelinestobeincludedinD2.2andD2.3.Keypointsinthisapproachare:

1) The current version of the CAREGIVERSPRO-MMD platform can be found on theInternet at: http://www.cuidadores.pro/?locale=en. This platform design was theoutcome of previous work, but was used in this task as an example of existingtechnology in order to capture user’s responses towards conceptual and usabilityissues.

2) Not all user groups share the same needs and preferences. Actually, one of thechallenges of CAREGIVERSPRO-MMD is to provide a way to handle differentprioritiesandservedifferentuserneeds,abilitiesandpreferences.ThePACTanalysiswillincludefocusgroupsandsemi-structuredinterviewsin4differentsites(France,Spain,ItalyandtheUK).

3) Thenewplatformwillberedesignedindepth,willbeadaptedtonewrolesandsoaPACTanalysisisrequiredtoconcludeonthemosteffectivetechnologies.

Literature evidence and feedback collection from focus groups were used to generateconclusions on how to redesign the platform according to a top-down approach, howfeaturesshouldbeprioritizedandwheretogiveemphasison.AnoverviewoftheWP2andbasicdataflowsispresentedinFigure1.Inthenextsections,thefollowedmethodologyandtheresultsofthePACTanalysisarepresentedinsection1.TheFocusGroupsapproachandtheinterviewreportsofthepilotsitesarepresentedinthesecondpartofthedocument.

Figure1.WP2ataglance


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1.1 PactAnalysisMethodology

WhatisPACTAnalysis

AnanalysisbasedonPeople,Activities,ContextandTechnology,well-knownbytheacronymPACTisagenericframeworkusedtoanalysedesignsituationsininteractivesystems.PACTanalysis follows the principle that "PeopleuseTechnologiesto undertakeActivitiesinContexts"andcoversthescopeofHuman-ComputerInteraction(HCI)[Benyonetal.,2005].By following this principle, designers understand how each element varies and how allelementsaffectoneanother.

Conceptsrelatedtoworkingmemory,perception,attention,reasoning,decisionmakingandproblemsolving introducecognitivepsychology todescribe relevantaspectsof thePeoplebeinginvolvedinusingtechnologyineverydaylifeactivities.Peoplevarypsychologicallyandphysiologically, they differ in the different motivation, goals and in the mental models[Benyon, 2010] theyusewhen interactivewith ICTbased systems.Designersmust ensurethattheinterfacedesignsprovidesufficientinformationtohelpuserstoconstructtherightmental models on the platform concept and its elements before taking action and solveeverydayproblemswithit.

NextthescopeofhumantasksandtheneedtomodelhumanActivitiesisintroduced.User’srequirementsareexpectedtobeinsertedintothewayactivitiesaregoingtobeperformed.There are 5 aspects for activities: Temporal (frequency of the activities), Cooperation,Complexity, Safety-critical and the nature of the content [Benyon, 2010]. The type ofactivity,security issuesanddependenciesonotherpeopleand/ortechnologicalmeansaretakenintoaccount.

Talkingaboutdesignsolutions, thereare influencing factorswhichgive theContextof theactivities. This includes people’s expectations, physical, psychological, social andorganizational context and anything else can describe human’s perspective. In using asmartphoneoradesktopcomputer topostamessage inyour socialnetwork, thecontextcanvaryfromhomeusetohospitaluseforexample.

Finally, the design solutions are applied on a Technology framework. The positive andpossiblenegativeaspectsof this technologyaredescribedandthewayanexistingornewinteractive system can be implemented. Designers should be aware of the latesttechnologiesinordertochoosethebestoption.

An extended version of this approach (IMPACT Analysis) includes two more elements:Intention used to determine why to evaluate and theMetrics to describe what to bemeasuredandhow[Ahonen,2014].

WhentoUseaPACTAnalysis

When to use a PACT analysis andwhat to expect from such a study is also important. Ingeneral, a PACT analysis can be proved particularly helpful when the concept is a designsolution, especiallywhen analysing a platform design that already exists and needs to beredesigned.WithPACTmethodology,designersbecomeawareofthecurrentsituationandwhat end users think of the current design. In addition, it can help in determiningwhich


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parts of the current design are open for improvements. Actually, designers can visualizefuture designs and experiment with different people profiles, actions performed in theplatform,contextofuseandvarioustechnologiesonoffer.

2 PACTAnalysisinCAREGIVERSPRO-MMDPACT and Focus Groups are two different methods used in CAREGIVERSPRO-MMD toidentify requirements.Thisapproachhasbeen identified in literaturehavingFocusGroupstobeusedinconjunctionwithothermethods[Edwards&Holland,2013].Thus,thosetwoapproaches complement each other towards their common objective to provide designguidelinesforthenewplatformdesigners.Figure2presentstheoverallapproach,inwhichthe PACT analysis will propose the first version of requirements followed by the FocusGroupsapproachwhichwillupdatetherequirementsbasedontheinterviewresults.

Figure2.UserneedsidentificationthroughatypicalPACTanalysisapproach

2.1 Innovationbeyondthestateoftheart

WithinCAREGIVERSPRO-MMD,existingPACTanalysisapproachesareapplied(Figure3),butsome advances like the Focus Groups approach and the additional study on elderlymotivationstrategiesaretargeted in linewiththeprovisionofgamificationandtreatmentadherence components. Thus, peoplewill bedescribedbyWP1documentation, butmoredetailscomingfromtheFocusGroupsinterviewswillshedmorelightintothecharacteristicsofthePLWDandtheircaregivers.Moreover,theFocusGroupsapproachwillsensepossibledifferencesamongpopulationswhich live indifferent countries andhavepossible culturaldifferencesandwillreportotherpossiblevariationsinhealthcaresystems,thecontextandtheactivities.

The CAREGIVERSPRO-MMD platform will be built on the characteristics of similar socialnetworks (e.g. Stitch1, Olderiswiser2) and healthcare platforms (like the iValueHealth.NET3and Seniornet.org4). Advances with respect to existing accessibility requirements aretargetedliketherequirementsforpeoplewithMildtoModerateNeurocognitiveDisorders.Moreover, advanced features are aimed to be incorporated to platform components and

1http://www.Stitch.com2http://www.olderiswiser.com3http://beta.iValueHealth.NET 4http://www.seniornet.org


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new functional and interface featureswill be provided according to the current trends inhealthcaretechnologies,gamificationrequirementsaswellaspersonalizationrequirements.

Figure3.PACTanalysisoverview

2.2 People

For the needs of the CAREGIVERSPRO-MMDproject, the PACT analysiswas performedbytakingintoconsiderationallusercategories,namely:

• PLWD people with Mild Neurocognitive Disorders or Mild to ModerateNeurocognitiveDisorders.Participantswhobelonginthiscategoryaredividedintotwo subgroups depending on the severity of their symptoms according to thediagnosismadebytheirdoctor.

• Caregivers: Formal and informal caregivers (nomatter if they are paid or not) arepeoplewhoprovidecaretoPLWDindividualswithMNDwithhisorheractivitiesofdailyliving.

• Health Professionals: health care professionals (doctors, nurses, psychologists,geriatrics,specialists,etc.)whoworkasprimarycaregiverofaPLWDinahospital,skillednursing facilityor clinic. Thosepeople areexpected tomakediagnoses andsettreatmentplansforPLWDandcaregivers.

• Helpers: are unofficial caregiverswhomay provide help not in a systematic basis.The difference from caregivers is that helpers are not responsible for treatmentadherencealthoughtheymaytalk todoctorsandnursesonPLWD'sbehalf incasetheyarerelativesorauthorizedinanyotherway.

• Social workers: are professionals who work with people with neurocognitivedisorders and their families to provide support and help in order to improveoutcomesinpeople'slives.Theymaintainprofessionalrelationshipswithpeopleand


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their families, may work for the state and are especially interested on the socialstatusofPLWD.

Thus, we decided to involve all user categories and people with such different abilities,needs,professionalorientationandrolesaregoing tobe involved in theCAREGIVERSPRO-MMDPACTanalysisprocess.TherestofthePACTschema,depictedinFigure3,refertotheactivitiestakenbythoseusergroups,thecontextunderwhichthoseactivitiesareperformedandfinallythetechnologiesinvolvedinthoseprocesses.

The following sections discuss people characteristics and give emphasis on PLWD andcaregiverswhendesignandpersonalizationissuesareunderconcern.

2.2.1 Dyads(PeoplewithNeurocognitiveDisordersandtheirCaregivers)

Thenumberofpeoplewhosufferfromneurocognitivedisordersisincreasing.Itisexpectedthat by the year 2040 the number of people with dementia will reach the 100 billion.Cliniciansmaybesurprisedbythisphenomenonandtheywill findthemselvesunpreparedtomakeaccuratediagnosisandproposetreatment.ThemechanismbehindtheprogressofDementiaanditsprodromalconditionsknownasMildNeurocognitiveDisorder(MND)isstillunknown. Apart from early diagnosis, the aim is to provide a platform to host socialnetworks, to deliver education and skills training, to strengthen treatment adherence andcreate motivation for participation to all people involved, but especially for people withMNDandtheircaregivers.

The most strained target group for CAREGIVERSPRO-MMD is described as people whoeither: a. are elderly, so they need all care derived from the age factor and practicallydelimitspossiblevision,acousticandmotorabilitiesoftheendusersorb.arepeoplewholivewithDementia(PLWD)andhavesomekindofcognitivedecline.ThediagnosisofMNDisbasedonthe5theditionoftheDiagnosticandStatisticalManualofMentalDisorders(DSM-5)andgoesbeyondnormalissuesofaging.

Progresstomajorneurocognitivedisorder(dementia)orothersimilardebilitatingconditionsisalsodescribedbyDSM-5andrequiresadditionalstrategiestohelpmaintainindependenceandperformactivitiesof treatmentadherenceanddaily living.Clinical symptoms inPLWDinclude cognitive symptoms, as well as behavioural and psychological symptoms asdescribedinD1.2.(Dementiaandpsychiatriccomorbiditysymptomsassessmenthandbook).Moreover,effective treatmentsandplatformdesign takes intoaccountcomorbidity issuesdescribedinthesamedocument.

Ontheotherhand,digitaldivideisthesecondmajorissuewhenworkingwithpeoplewhoare not young or they have -as for various reasons- limited knowledge or access to ICTtechnologiescauseinequalities.AfirstresearchquestionisifthisinequalityiscausedbyagerelatedimpairmentoritcausedbywhatPrenskydescribedas‘digitalimmigration’[Prensky,2001]. According to this approach, people who have been born on the era ofelectromechanicalinterfacesfacedifficultiesinusingICTandwebbasedinterfacesandalsoit isnoteasy for them tounderstandmodern technological concepts. Thisdigitaldivide isaffecting people linearly with their year of birth and it is considered as a pessimisticapproach.


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Ontheotherhand,therearestudieswhichdeliverliteratureevidenceontheabilityofthe-otherwise excluded- populations to adopt ICT based technologies as long as the interfacedesigns are accessible. Accessibility in our case is not linked only to the age-relatedconditions,but it isextendedtocognitivedeclineconditions.Althoughtherearestandardsfor designers like the Web Content Accessibility Guidelines (WCAG 2.0 - W3C) and theusabilityguidelinesfortabletapplicationsfortheelderly[Blendinger,2015],thereislackofdesign guidelines for people with cognitive decline. Some sporadic design practices andguidelinesaretoogenericandcontributeverylowintheactualinterfacedesignphase.Themost important symptoms to take into consideration are attention disorders, executivedysfunction, reasoning anddecisionmakingdisorders andmemory loss.Also, peoplewithMNDfacedifficultiesinorientationandnavigation(informationdisorientation).Asaresult,the most popular approach, which is quite intuitive, is to follow a minimalistic interfacedesign in order to minimize the memory load and to use simple navigation methods torestrictinformationdisorientation.

GiventherisingnumbersofpeoplewhodevelopMNDitbecomesobviousthatpeopleneedspecialcareandneednottobeexcludedfromthebenefitsofICT.Accordingtothe‘activeparticipation-bettercare’principle, there isasubstantialclinicalneednotonlytodiagnoseindividualswhoneedcareforcognitiveissues,buttocontinuouslysupporttheminactivitiesinandoutoftheplatform.TheUserAnalysistableofD1.1(AccessibilityReport)willhelpindetermining those design characteristics which make the platform design accessible forelderlyandthepeoplewithcognitivedecline.

PhysicalAspects

There are many diverse cultures at CAREGIVERSPRO-MMD pilot sites and also in EUsocieties.Hencetheplatformwill supporta lotofdifferent typesofpeople,withdifferentphysicalaspectslikebodyshapeandsizes.Alsovariabilityinsenseslikesight,hearing,tasteandsmellcanbeconsidered.Butthosedifferencesmaynothavetoomuchsignificance intheplatformdesignasstandard inputandoutputdevicescanabsorbthosedifferences. Ingeneral,peoplediagnosedwithMNDdonotpresentdifferentphysicalaspectsthanhealthyelderly.Thesameistruefortheircaregivers.Perceptionmaybetheonlyexceptiontothisrulebecause it involvesbothphysicalandbehaviouralaspects.Thus,vision,hearing,taste,smell and touch result from sensing organs and involves the nervous system. Finally,perception isanactivereceiptandresponseshapedby learningeffectonstimuli,memoryretrieval,awarenessandattention.

PsychologicalAspects

People diagnosedwithMild Neurocognitive Disorders preserve their general intellect andeverydayactivities,butminorchangesineverydayactivitiesmayoccur.However,theymayexhibitsignificantbehaviouralandpsychologicalsignsandsymptoms(BPS),alsofrequentlyobservedinPLWDwithAlzheimer'sdisease[Pocnetetal.,2015].IntheD1.1.,anextensivelist of psychological symptoms of PLWD is reported. Those vary from anosognosia toaggressiveness.Also,sleepandeatingdisordershavebeenreported[Pocnetetal.,2015].

Olderadultsmayhavenegativeattitudestowardstheuseofsocialnetworksduetoprivacyprotectionissuesandthelackofcodeofsocialconduct[Xieetal.,2012].Wecouldsaythat


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fromapsychologicalpointofview,socialnetworksmaycreatestresstoseniors,especiallywhentheyarefreshmeninsocialnetworking.Whatisneededtolowerthisstressistofindawayto:a)explaininadvancethecodeofsocialconduct,b)createthefeelingofprivacyinconversations and social interactions, and c) secure themedical and other sensitive datatransfer.

On the other hand, caregiversmay be themost stressed population of CAREGIVERSPRO-MMD platform as they feel responsible for both their PLWD’ health and their own. Thestressrelatedtothetreatmentadherence,themanagementofconditions,themeetingsandthecommunicationwiththedoctorsandothermedicalprofessionalshaveastrongeffectontheireveryday life.Suchawiderangeofpsychologicalaspectscannotbedirectly linkedtodesignapproaches,butdesignerscan takeadditionalactions inordernot toburdenthosepsychologicalconditions.

Theplatform,initsfullactivitywillbeprettycrowdedwhichisexpectedtobeperceivedbyusersas stressfulbutpleasantat the same time.Userswill speakdifferent languages;willparticipate incirclesandCafédiscussions.Thus,saferconclusionsonpsychologicalaspectsmaybedrawnaftertheplatformisreadyandthecommunityreachacriticalmass.

UsageAspects

Usage differences between users are expected to be high on account of the differentcomputerknowledgeandabilities.Performancewhenworkingoncomputerizedmeansandperceivedexperiencebyusingaplatformmaybequitedifferentforanoviceusercomparedto an expert. It comes natural that users with low confidence in using technology needguidance when they interact with a platform. The level of perceived difficulty is criticalbecauseundercertaincircumstancesitmaydisappointpartofusersorparticipantsandthisinturnmaycreatediscontinueduserparticipation.Guidancecanbeofferedbycaregiverstotheircaredones,butthisguidancemightbelimitedifcaregiversarenotcomputerliterate.

Especiallywhendesigningservices forheterogeneousgroups,usageaspectsshouldnotbeunderestimated. In CAREGIVERSPRO-MMD we aim to design a platform for bothprofessionalswhomayusecomputersandICTproductsinadailybasisanddyadsofPLWDand caregivers, which might not be technology experts. If the user categories wereseparatedby isolatedplatforms this couldbe solvedby simplydesigningoneplatform foreach. But in this case designers are required to offer equal chances to all user categoriesdealingwithallphysicalandbehaviouralaspects,plususagedifferences.

Asasetofadditionalquestionstodesigners,dousersmakeuseoftheplatformfrequently?Are all user categories usually frequent? The PACT analysis provided evidence to supportthat not all user groups are equally frequent users. However, the CAREGIVERSPRO-MMDplatform is expected to be used in a daily basis by dyads, not only to report treatmentadherence and other important aspects of the caregiving and health status, but also tosocializewithothers.

BehaviouralAspects

‘Perception’ is defined as the organization, identification, and interpretation of sensoryinformation inorder to represent andunderstand theenvironment [Schacteret al. 2011].Attentionisthebehaviouralandcognitiveprocessofselectivelyconcentratingonadiscrete


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aspect of information, whether deemed subjective or objective, while ignoring otherperceivable information [Anderson, 2004]. Attention and perception are major areas ofinvestigation within cognitive neuroscience and neuropsychology and there is literatureevidencethatpeoplediagnosedwithMNDhavedifferentperceptionandattentionabilities.Also, people from different cultural backgrounds may interpret things differently.Behaviouralandpsychologicalissueswillbere-estimatedatpilotstudiesandresultswillbereconsideredforfinalmodificationsontheplatform.

In general, psychosocial and behavioural aspects may differ according to the type ofNeurocognitiveDisorderofthePLWD.ForthePLWD,itishighlypossiblethattheywillhavelesscontactwiththesocialnetworkthantheircaregivers.Also,itisexpectedthatwithtime,andwhiletheneurocognitivedisorderprogress,PLWDwillbe lessactiveand lessfrequentusersoftheplatform.Tobalancethat,itisexpectedthatcaregiverswillbecomemoreactiveinordertocoverthismissingparticipation.

2.2.2 Professionals

ThissectiondiscussesbrieflythecharacteristicsofSocialWorkersandhealthprofessionals.

PhysicalAspects

Nursesareamongthemoststressedteamsofprofessionalswhoareburdenedwiththedailycare of PLWD and this causes a lot of work related disorders by awkward postures, highloadingrequirementsandpsychologicalriskfactorswhichresultsinneck,backandshoulderpain[Ellapen&Narsigan,2014]. Itwouldbebeneficial forthemtobeabletoeducateandgiveexamples to caregiversonhow to take careof theirPLWDonhomeenvironments inordertominimizetheneedforhospitalization,nomatterifthemedicalcausesaredifferentthan Neurocognitive Disorders or not. Physical aspects in relation to other professionalteamsarenotreported.

PsychologicalAspects

Thepotential of socialmedia use for clinical practice andpossible negative consequenceshasbeeninvestigatedby[Anja,2013].Oneofthemostimportantaspectsisthelowlevelofcooperation PLWD have with their caregivers and medical teams. A typical aspect of astressful doctor-PLWD relationship is when PLWD start searching over the Internet formedicalinformationandwhendifferent,itmayleadthemtoloseconfidenceintheirdoctoror othermedical professional they have come to consult. This negative effect is reportedhere because themanagement of the negative behaviour of PLWD is handledmostly byprofessionals. No tomention the raisingmalpractice suits against doctors; almost half ofdoctorsaccordingtoaMedscapesurveyhavebeennamed inat leastonemalpracticesuit[Peckham,2015].

Medical professionals are also being involved with PLWD with terms of empathy andhumanity.Thedemandsof the jobaresuchthatdoctorshavetoremainobjective,handlePLWD'spainandproceedwithcarefuldiagnosesanddesigntreatmentplans.Self-criticismisrelated to high rates of depression and the overall physical and emotional distress maycauseaburnout(Table1).


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Table1.Emotional,cognitive,behavioralandphysicalsymptomsofburnoutinmedicalprofessionals[Peters,2015].

Emotional

Lossofhumour Irritability/resentment/bitterness

Feelingsoffailure/guilt/blame Depressedmood,apathy

Cognitive

Poorconcentration Rigidity/resistancetochange

Stereotyping Ruminations(ofleaving,revenge,andsoon)

Objectification/distancing Suspicion/mistrust

Behavioural

Work avoidance (absenteeism, clock-watching,andsoon)

Diminished personal conduct withclients/colleagues

Inflexiblebehaviour Habituallateness

Actingout(alcohol/drugs/affairs/shopping,andsoon)

Physical

Tiredness,lethargy Sleepdisorders

Increasedminorillnesses(headache,backache,andsoon)

UsageAspects

Althougheveninprofessionalenvironmentspeoplemaydifferintheircomputerliteracyandwaysoftakingadvanceoftechnology,thosedifferencesarenothighanditisnotexpectedtobehaveaseriousimpactonusage.

The standards expected of doctors do not change when moving from face-to-facecommunication to social networks-based communication [GMC, 2013]. McGowan et al[2012] studied how medical professionals are using social networks to share ideas andmedical data with other colleagues and to identify the factors that influence the socialnetworking for occupational training and professional development. On a weekly basis,those frequencies were raised to 61% and 46% respectively. Their attitudes against theoverallusefulnesswasalsoverysatisfying57%.

Thus,healthprofessionals,includingpsychologistsandnurses)areexpectedtomakeuseoftheplatforminadailybasisandnotbeonlypassiveuserswholikefollowingdiscussionsandreading articles, but for bemore interactive. Social workersmight be less frequent usersthandoctors,butareexpectedtobeweeklyuserstokeeptheirrecordsonsocialstatusoftheirclientsupdated.

BehaviouralAspects

Itisexpectedthathealthprofessionalprofileswillbeassociatedwithvalidscientificcontent,and this content will be easily promoted into the CAREGIVERSPRO-MMD community.Nonetheless, medical and healthcare professionals are also interested or advised tomaintainaprofessionalboundarybetweenthemselvesandtheirclients.Thus,wemaynot


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expect that this user category will generate plethora of content in the Café, or otherdiscussion groups. As professionals, physicians will have limited time to stay long in theplatform, so their login-logout sessions will be short but relatively more important thanotherusercategories.

Therewillbedifferencesinthequalityofinteractionandthetypesofactionsundertakenbymedical and healthcare professionals in the platform. For example, although theywill beeasilyconnectedwiththeirclients(andtheircaregivers),thesocial interactionwithclinicalpopulationswillberelativelylowerthanbetweenothercommunitysubgroups.

OverviewofthePeopleanalysis

The main challenge is to handle such a diversity of mental models, motivation andintentions.Somemightexpect theplatformtobeused for skills training,whileothers seeonly social servicesonoffer. Someusersmayuse ICTproductsand services for treatmentadherenceandsomeothersmayhaveverylimitedexperienceinusinghealthcareplatforms.InTable2themostimportantpointsofpeopleanalysisaresummarized.

Table2.Peopleanalysisoverviewandkey-pointsforDyadsandprofessionals

Dyads

Physical

Sizeoftheenddevice(tablets)

SizeofvisualelementsandUIcontrols

Fingerorhanddisability

Vision/Hearingdisability

Psychological

Languageandculturaldifferences

Pressureontheenduserfornothavingcomputerdrivingabilities

Usage

Usersknowhowtousesocialnetworksfromotherplatformsonthemarket

Noteasytouseforfirst-timeusers

Behavioural

Psychosocial and behavioural aspects may differ according to the type ofNeurocognitiveDisorderofthePLWD.

TheloweractivityofthePLWD,thehigheractivityofthecaregiverstobalancethedyad’ssocialpresenceandtheoverallactivity

Professionals

Physical

Sizeoftheenddevice(useoftabletsandPCalternately)

CustomizationinUIlayoutstomeetprioritiesoftheirjobdescription

Psychological

Languageandculturaldifferences


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Pressureontheenduserfornothavingallthetimeordataneeded

Usage

Usersknowhowtousesocialnetworksfromotherplatformsonthemarket

Easyconnectionstootherexistingmeansofcommunicationlikeemails

Behavioural

Medical professionals willmaintain a professional boundary between themselvesandtheirPLWD.

Time constrains and the role of medical professionals will lead to shorter in-platformsessions

2.2.3 Motivation

Motivationcanexplainthereasonsbehinduser’sbehaviour.Thiswillanswerthequestion”Whatcausesanindividualtowanttoparticipateinahealthcareplatform,atreatmentplanor a virtual community?”. Increasing motivation in a workplace can help improveperformance and boost productivity, but in a lifestyle club can help raise participation,socializationandmorale.Thus,motivationandmotivators(thewaystoprovidemotivation)work for different types of user groups. For medical professionals, as well as for socialworkers,theCAREGIVERSPRO-MMDplatformwillbeaplacetowork.Ontheotherhand,forPLWD,caregiversandhelpers,itisexpectedthattheplatformwillbeperceivedasaplacetomake new contacts, to spend some time in discussions, to get information and advice. Inoverall,varioususergroupswillgettogetherintheCAREGIVERSPRO-MMDplatformandforthoseusergroupsdifferentmotivatorswillbeapplied.

Just like inmotivationalmodels forphysicalexercise [Phillipsetal.,2004],mentalexerciseinitiation andmaintenance requiresmotivationmodels to be defined and used. Cliniciansneed to actively promote mental and physical activity, along with medication anddiagnostics. Special interest is paidongamification services for theelderlyhaving inmindthatgamificationrequiressomeadaptationtoimprovetheelderlyexperience. Ingeneral,thewaytechnologyisusedisinfluencedbyatechnologygeneration,education,socioeconomicstatus,cognitiveabilitiesandattitudes[Oppenauer,2009;Hoofetal.,2013].Specifically for lifestyle applications, digital gaming experiences can diagnose and treatneuropsychological diseases [Lopez-Martinez et al., 2011], encourage elderly people tophysicallyandmentallyexercise,delaytheoccurrenceofmentaldiseasesandthusimprovetheir quality of life [Cota & Ishitani, 2015]. Studies on the motivations for playing digitalgamesby theelderlydonotshowclearandspecific results [Brown,2012].Thus thestudyregardingpreferences,motivationsandneedsofelderlypeopleondigitalgamesisongoing[Gerlingetal.,2011;Cota&Ishitani,2015].

Moststudiesagreethatsimplecasualgamesandgamestransferredtocomputerslikecardand board games, puzzles and quizzes are standard preferences of older people[Vasconcelosetal.,2012].Also,elderlyprefergamifiedexperienceswhichsupportscenariosconferredhealthbenefitslikebraintrainingandreflextests[Gerling&Masuch,2011;Napetal., 2009]. The taxonomy of games and gamified environments for the elderly made by


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McCallum [2012] propose five categories of applications: Preventative, Therapeutic,Assessment, Educational and Informatics.McCallum also provides evidence ofmotivationprovidedbymarket-readysolutionsliketheLumosityplatform5whichhostsnumerousbraintraininggamesfortheelderly.

Based on all of the above, Table 3presents some techniques for providingmotivation tousers, per user category. Priorities are on goals setting, recognize effort and providefeedback.

Table3.ProposedTechniquesforincreasingmotivationperusercategory

MajorMotivators Description

AllUserGroups

Mutualassistance Combine social aspectswith technology to build a community ofmutualcare.Amongotherthings,communities whose membersmayrequestassistanceandatthesametimegetmotivatedtoplaytheroleofcaregivers,canserveasaplatformtoeffectivelyorganize the social resources, promote social connection, andintroduceintergenerationalactivities[Guietal.,2007].

Incentives Create individual incentives for each user category and teamincentivesforclubsandmembersofthePLWD’circlestomotivateusers as a group. Symbolic incentives can include badges, pointsearned, various other prizes and certificates. This motivationapproach should have strong connections to the gamificationplatformandincentivesbedirectlylinkedwiththeawardsystemofthegamifiedplatform.

RecognizeAchievements

Celebrate user’s achievements through media and textnotifications which will disseminate achievements in the user’scircle. This may include celebrations at medical staff meetings(physical, virtual, or both), printed certificates for PLWD (apartfromdigital), shortanimations for reaching importantmilestones,etc.Recognizegroupaccomplishments,aswellas individualones.Groupaccomplishmentswillbecomputedbysumminguppersonalachievements.

SolicitUser’sFeedback

Surveyend-usersabouttheirlevelsofsatisfactioninaregularbasis(just like the repetitive assessment made monthly in T2.1).Conduct anonymous pollsand ask user’s opinions to continuallyimprove platform features and conditions of its use in the realhomes, clinics, Cafes and working environments. This Feedbackmayalsobeforwardedtopolicymakersandthiswillbeadvertisedinusergroupsandcommunities.

ProvideEnrichment

Encourage users to continue their education and skills trainingthrough the platform and not only. Provide professionalenrichment for medical professionals and social workers andeducationonneurocognitivedisorders.Ontheotherhandprovide

5http://www.lumosity.com


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general health education and best practices to caregivers andhelpers.

Dyads

Setpersonalgoals Makesurepersonalgoalsarereasonableandachievableforallusergroups,especiallyforpeoplewithMildtoModerateNeurocognitiveDisorders

Setcommunitygoals Makesureteamgoalsarerepresentativeandthatasharedidentitycanbecreatedforsub-groupsinthecommunity

MedicalProfessionalsandSocialWorkers

Createapositiveworkingenvironment

Motivate employees by giving them a positive work environment.Makeproactiveplatformbehaviourinordertocausechangesbyitsactions and not only to react to changes when they happen. Forprofessionalstheplatformwillbeanextensiontotheircareer-basedenvironment,sotakeactiontoeliminateconflictsastheymayariseand give them the freedom to work independently whenappropriate.

SetGoals Help employees become self-motivated by helping them establishprofessionalgoalsandobjectives

Profits Profitscannotbesharedbytheplatformandthroughtheplatform.Earnings will not be connected with platform profile activity andteamwork. Thismay be amatter of the businessmodel for futuremarketusesoftheplatform.

2.3 Activities

Activities include intentional and conscious actions made by the users in real life and inplatforms.Activitiesaresubjectivelymeaningfulfortheperformingusersandaremadeonpurpose.Adistinctioncanbemadeinonlineactivitiesandreallifeactivities.Onlineactivitiesincludeall activitiesmade in theplatformandby theplatformandmost frequently thosehave been designed to help real world healthcare problems. Apart from activities whichhave been transferred from real life to the platform, like giving such as completing adepressiontestsurveyforexample,thereareotheractivitiesmadetoserveneedsrelatedtotheplatformitself.Theonlineactivityguidedbytheuserscanbedescribedbyitscategory,resourcesrequiredornatureofthecontent(typetext,showvideo,etc.),goalandintention,frequencyandcomplexity.Therearealsosecurityandsafetyissuesrelatedtotheactivitiesthatneedspecialcare.

AccordingtothePRCresearch[PewResearchCenter,2010]the Internetactivityofelderlyusers (65+ years old) is increasing at the largest growth in a demographic group. Elderlyusers,whichareexpectedtobethedominantusergroupinourPLWDandcaregivers’usercategories, use these tools to bridge geographic gaps. They are especially interested inbridging gaps between them and their lovedwho live far away or to re-connectwith old


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friends.OtherimportantusesoftheInternetincludeinformationalandeducationalactivitiesandtheyarerelatedtointernalmotivationofseniors.

Table4.PopularityofInternetactivitiesamongInternetusersineachgenerationandpercentagesofthosegenerationgroupsinthetotalpopulation[PewInternetSurveys-pewinternet.org]

MillennialsGenX Young

BoomersOlderBoomers

SilentGeneration

G.I.Generation

Ages 18-33(30%popul.)





Ages74+(9%popul.)

Email Email Email Email Email EmailSearch Search Search Search Search SearchHealthInfo HealthInfo HealthInfo HealthInfo HealthInfo HealthInfoSocialNetworksites

Getnews Getnews Getnews Getnews Buyaproduct

Watchvideo Govtwebsite Govtwebsite Govtwebsite Travelreservations

Getnews

Getnews Travelreservations

Travelreservations

Buyaproduct Buyaproduct Travelreservations

Buyaproduct WatchVideo Buyaproduct Travelreservations

Govtwebsite Govtwebsite

IM Buyaproduct WatchVideo Bankonline Watchvideo BankonlineListen tomusic

Socialnetworksites

Bankonline Watchvideo Financialinfo Financialinfo

Travelreservations

Bankonline Socialnetworksites

Socialnetworksotes

Bankonline Religiousinfo

Onlineclassifieds

Onlineclassifieds

Onlineclassifieds

Onlineclassifieds

Ratethings Watchvideo

Bankonline Listen tomusic

Listen tomusic

Financialinfo Socialnetworksites

Playgames

Govtwebsite IM Financialinfo Ratethings Onlineclassifieds

Onlineclassifieds

Playgames Playgames IM Listen tomusic

IM Socialnetworksites

Readblogs Financialinfo Religiousinfo Religiousinfo Religiousinfo RatethingsFinancialinfo Religiousinfo Ratethings IM Playgames ReadblogsRatethings Readblogs Readblogs Playgames Listen to

musicDonate tocharity

Religiousinfo Rarethings Playgames Readblogs Readblogs Listen tomusic

Onlineauction Onlineauction Onlineauction Onlineauctions

Donate tocharity

Podcasts

Podcasts Donate toclarity

Donate tocharity

Donate tocharity

Onlineauction Onlineauction

Donate tocharity

Podcasts Podcasts Podcasts Podcasts Blog

Blog Blog Blog Blog Blog IMVirtualworlds Virtualworlds Virtualworlds Virtualworlds Virtualworlds VirtualworldsOver50% 90-100 80-89 70-79 60-69 50-59Below50% 40-49% 30-39% 20-29% 10-19% 0-9%Percentage(%)ofInternetusersineachgenerationwhoengageinthisonlineactivity


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Thispartofthestudyintroducesquestionslike:WhichoftheInternetusescanbesatisfiedfrom the new platform design? How frequent each certain activity is performed and bywhichusercategories?Dotheseactivitiescomeasaresultofanindividualorco-operativework? Are frequent activities easy to do? Are they continuous or interrupted? Currentpractices,datainputrequirementsandexpecteddurationoftheactivitiesmustbediscussedtoo.Itisimportantfordesignerstomakethehealthcareplatformdesignasclearandsimpleaspossiblesothatmanypeoplecanusethehealthcareplatforminhighestreadabilityandwithouttheneedofhelp[Benyon,2005].

The following sections discuss activities by categories.We distinguish activities related toinformation exchange, socialization and team belonging, personal skills and teamdevelopment,clinicalactivitiesandtreatmentadherence.

2.3.1 ActivitiesofDyads

Unlike other social networking platforms like Stitch, which offer member-driven groupactivities,travelandone-on-onecompanionship,inthissectionwediscussInternetactivitieswhich can be introduced into the CAREGIVERSPRO-MMD platform. Activities that liesoutside the platform may be referred by the notification system as interestingannouncements.

Based on literature findings, activities for PLWD and their caregivers can be grouped intoinformationandcommunicationactivities,socializationactivitiesandpersonaldevelopmentactivities.Moreover, we introduce gamification and treatment adherence activities whichare of particular importance in this project. Those two additional activity groups areadvancestoexistingsocialnetworkplatforms.

InformationandCommunicationActivities

People find information on printed and electronic media. Printed materials like leafletsfoundavailableon clinics anddoctor’soffices is anestablishedmethodof communicationfor medical issues. People consider this source of information credible, but it is a costlymean to supply. On the other hand, electronic media like those found on the Internetprovideanalternativesourceofinformationandcommunication.Officialsitesofclinicsandknown communities provide medical and lifestyle information for PLWD. InCAREGIVERSPRO-MMD,theplatformitselfwillbeaninformativeandcommunicationspace.Equippedwith all tools required for searching, readingandpostingmessages andarticles,this new platform will be the environment in which knowledge will be accumulated andshared among its users. Most people will make use of parallel information andcommunication channels, or they may continue to use printed media. Existing and newmedia used in the platformwill not bemutually exclusive as in real life. Usersmaywriteoriginal articles, post links to other articles, make references to external to the platforminformation channels, etc. In overall, it is expected that information and communicationactivitieswillbeoneofthemostfrequentkindofactivityforallusercategories.

SocializationActivities

Allusercategoriesneedsocialexperiencestolearntheircommunity, itscultures(includingcyber-cultures)andtoevolvetheirprofileandavatar.Socializationactivitiescanbedivided


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intotwomajorcategories:a.onerelatedtothegrowthofthesocialnetworkandincludesmaking new contacts, send contact requests and explore the social space in subgroups(circles or clubs like in the Cafe) and b. another one related to the content of the socialnetworkwhichisthepeopleparticipatinginsocialactivities,theknowledgeaccumulatedindiscussions and the cultures to be created within the platform. Actions of the secondcategory usually includemessage posts, applying search criteria on user profiles and clubdiscussions,editingfavourites,etc.

No matter the result, tryingto do something in a social environment might also beconsideredanaction,even if it isunsuccessful.Thus, tryingtoconvinceothermembersofthecommunityforanideaormakecertainchoicesinsteadofothersissocializationactivity.Inanycase,fromthedesigner’spointofview,socializationactivitiesrequireuser’svisibility,a critical mass of users (or simple participants in social events) and the tools to performideassharing.

Indeed,therearesomecommonaspectswithcommunicationactivities,butsocializationisclosertothesocialcapitalandthesocialinteractionsthatareabletocreateculture.Postingamessage to the circle or sharing awww linkwith others is not enough. Social norms inonlinesocietiesmaybesimilaranddifferentthaninreal life.ButforCAREGIVERPRO-MMDusers’socialactivitiestypescanbeseeninrelationtotheknownsocializationtypes:

Online Primary Socialization: This is mainly influenced by the immediate caregiver(s),helpers(familyandfriends)andprofessionals(doctorsandotherclinicians).Thisactivitycanbe required for moving to other socialization steps. A PLWD profile without sufficientpersonal informationandwithoutaminimumsetofconnectionstoCaregiver,HelpersandDoctors may not be considered mature enough to proceed with higher forms ofsocialization.

Simple Secondary Socialization: In a second stage, users learn how to be amember of asmaller group of the larger society. Learning the appropriate behaviourwithin a personalcircle is the right example. Experimenting with PLWD’s personal circle is the aim of thissecond stage of socialization. Activities include simple communication actions and controloverthesizeandqualityofthepersonalcircle.

Advanced Secondary Socialization: It comes natural to most users to explore the wholecommunity and see the bigger picture. Socialization activities in this category includeextensivesearchoverthesocialnetworkandmanagesocialgroupsanddiscussionroomsintheCaféarea.Thedifferencesbetweenthesimpleandtheadvancedsocializationmaynotbe obvious or easily distinguished, but the chronology of the online socialization shouldfollowthissimpleschemafromthesimpleorinitialsocializationtothemoreadvanced.Also,thesocializationprocessshouldbesteppedenough,justlikeinreallife.

Re-socialization: As MND conditions progress by time and cause new states of cognitivedecline, re-socializationwill pay an important role in theCAREGIVERSPRO-MMDplatform.Unfortunately, it is expected that PLWD will discard former behaviour patterns and willacceptnewonesastheymovefrommildtomoderateneurocognitivedisorder.Thiscanbeanintenseexperienceasindividualswillhavetolearnnewnormsafterabreakontheirroleplaying.


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Organizationalsocialization:Inthisprocess,userslearntheplatformitselfanddevelopskillsusefultodrivetheirprofileandactivitytowardstheirobjectivesandaccordingtotheirrolein the platform. It is expected that user’s role in real life may have some (affordable)differences than their role in the social network and the platform. Thus, some actionsnaturallyperformedbyusersinreallife(localhealthcaresystem)maynotbetransferredtothehealthcareplatform,butthisisnotaproblemastheplatformisnotmeanttoreplicatethe healthcare system. However, user’s familiarization with the platform may influenceuser’soverallactivity.

Asnewcomersgetfamiliarizedwiththeplatformanditscommunicationtools,theywillalsolearn about the social network organization and history, the gamification rules andtreatment adherence procedures. They will go through stages of socialization like thoseproposedbyLevineandMoreland[1982],andmorespecificallyinfluencedbytherelationofthecommunitiestothesocialnetworks[Hansen,2012].

It is expected that this acquired knowledge about the platform will affect the way theyinteractwiththeplatformandothers.Verylowornoactivity inaparticulardomainoftheplatform (e.g. posting new messages) may rise prompts to read the user manual ordemonstrate how certain actions can be performed. The sensing of organizationalsocializationwillensureequalchancesinparticipation.

DevelopmentActivities

SeniorsemphasizetheinformationalandeducationalaspectsoftheInternet[Kamiel,2016].Theyareusing it inanencyclopaedicfashion,thusactivitiesrelatedtoeducationandskillsdevelopmentwill pay an important role in CAREGIVERSPRO-MMDplatform. Developmentactivities includepersonal training and skills development (e.g.mental exercises) and alsodevelopment activities targeted to treatment adherence (e.g. how to achieve bettertreatment adherence scores and maximize medical outcomes). Manually checking andrecordingtheattendanceofeachPLWDcanbeahardprocessandtimeconsuming. Itcanalsogeneratehighererrorratesandthiswillleadtoinaccurateestimations.Thus,reliabilityin treatment adherence services is one of themost important aspects, but this will be aresultofactivities’developmentfordyads.

Gamificationwill pay an important role in activities’ development. Gamification principleswillmake typical processes likeeducationand training tobe funand theoverall end-usersatisfactionwill bemaximized.Development activitieswill be directly linked to the awardsystemofthegamificationcomponent.

2.3.2 ActivitiesforHealthProfessionals

Healthcare companies are entering social media and this causes changes in the wayhealthcare consumers and health organizations interact (HRI, 2015). Thus, the so calledMedicine2.0ischangingthedigitalhealthcareenvironment.Medicine2.0canbedefinedas:

Medicine2.0 is the use of a specific set ofWeb tools (blogs, Podcasts,tagging, search, wikis, etc.) by actors in health care including doctors,PLWD,andscientists,usingprinciplesofopensourceandgenerationofcontent by users, and the power of networks in order to personalize


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health care, collaborate, and promote health education [Hughes et al.,2008].

To this end, participation in social platforms for medical professionals can range fromrelatively passive behaviour such as reading articles, posts and online discussions, up tomore active participation like sending privatemessages, posting articles and web links ingroups,oruploadingmultimediacontent.

Socialmediahavethepotentialtoofferanumberofadvantagestohealthcareprofessionalsincluding professional development [Ventola, 2014], thus educational activities will betargetedtomedicalprofessionalstoo.Accordingtoarecentstudy,oneoutoffourmedicalprofessionals use social networking sites daily or many times daily searching for medicalinformation, while the 14% contributed to the contents by adding new information on adaily basis [McGowan et al., 2012]. Also there are evidence on how doctors follow socialnetworks: threeout of four use social networking sites, but only 30%use communicationtoolsintheclinicalpraxis[Brownetal.,2014].

Basedontheabove,itisexpectedthatdoctorswillcontributetothecontentdevelopmentandtheywillkeepliveactivities.Moreover,medicalandhealthcareprofessionalswillcreateproposals for their clients and people connected to them. In this fashion, gamificationactivities initiated by medical and healthcare professionals will be presented to dyads as‘missions’tobeundertakeninthegamifiedplatform.

2.3.3 Temporalaspects

There is adifferencebetweenactivitiesperformedby individuals and thoseperformedbyteamsofusers.Inaddition,thereisonemorestate,thedyadinwhichPLWDandcaregiversconstitute the smallest social unit in CAREGIVERPRO-MMD platform. Most activities areperformedby‘socialstructures’,butprofessionalsmayparticipateasindividualsiftheylike.

In the first case (dyads) will pass through different phases of social inclusion as coupledindividuals.Latertheywillhavetoshifttheirindividual-levelperspectivestowardstoateamlevel in order to participate in group activities like in the Café. This process introducestemporal aspects as it transpires over time at different rhythm for each group of users.Schroder et al. (1967)identified: a) the amount of information processing required (theteammemberfamiliaritywillrequireaminimumamountofinformationprocessing)andb)thespeedwithwhichindividualscanprocessinformation(teamactivity:teammembersmaybecomemoreable,ormoremotivated)asthetwomainfactorsthatwillaffectthespeedatwhichintegrationcanbecompleted.

OtherimportanttemporalaspectsarerelatedtotheNeurocognitiveDisordersymptoms.AsthementalabilityofthePLWDisgettinglower,thedyadwillbecomelessactiveevenwithcaregiver’s efforts to preserve observed activity. Social activities, including gamifiedactivities, will become an important mental health resource among older users (mainlyPLWDandtheircaregivers)thankstothesenseofbelongingtoasocialgroup.Moreover,thegamification component of the platformwill offer the feelings of purposewith regard toeverydayonlineactivities.

Temporalaspectsrelatedtotherestoftheusercategorieslikesocialworkers,doctorsandothermedicalprofessionalsareexpected tobequitemild.Apart from the learningeffect,


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that is a positive change to the platform experience, professionals can become advancedusers as team players. The growing audience size (personal circles, Café, community sub-groups)willmotivateprofessionalexcellence.

2.3.4 SafetyandSecurityIssues

OneoftheobjectivesoftheCAREGIVERSPRO-MMDproject istodeliveraplatformtohelpPLWD,caregiverstomanagetheirhealthrecords,awaretheirmedicalandsocialstatesandmaximizethetreatmentadherenceofthemedicaltreatmenttheyfollow.Thesocialworkersandmedical professionalswill access those data andwill process according to the clinicalpraxistomakeapictureofthePLWD’scondition,proposeanoptimaltreatmentplan.

Health data is not the only sensitive information that needs to remain private. Othersensitive information include personal profile information, behavioral data (e.g. self-assessment, activity in the platform, etc.), statistics on feedback, performance andgamification status, and the personalized PLWD profile model, which is actually thecombination of all the above used to model individuals. Moreover, the functionalitiesofferedbythesystemneedstobesecuredalso.

Thefollowingschemagivesanoverviewofthedatathatisconsideredsensitiveandrequiresprotection:

-Demographicinformation

-Medicalinformation

-Feedback

-Socialnetwork

-Awards&points

-Skillsachieved-Accessibilitystatus

-Treatmentadherencestatus

First we need to identify specific security requirements and threats associated to theactivities inandoutof theplatformandaccording tovariouscategoriesofusersanddatatypes.Threatsand security critical issues related to theprotectionmechanism include themisuse of personal data, potentially harmful information via online communities [Leist,2013].Thus,thedatainput,storage,sharingandprocessingwillrequire:a)theprotectionoftheprivacyofusers,b)anoptimallevelofsecurityforthedatatransactions,c)tosafeguarddata integration (from multiple sources), and c) the confidentiality between PLWD andmedical professionals when using the CAREGIVERSPRO-MMD platform. Moreover, therelatedtechnologyavailablehastobestudiedcarefully.

Allsafetyandsecurityissues(likeaccessanduseofinformation,storageandbackupofdata,resourcingofdatamanagement,etc.)willbeaddressedaccordingtotheDataManagementPlan(DMP)reportedinD7.3,D7.7&D7.8.ThePersonal,Screening,Treatment,InterventionandDisseminationDatasetsownershipandaccesswillbedescribedindetailintheDMP.Inheresomecommonpracticesarereportedwhichcouldbetakenintoaccount(Table5). Inany case, those requirements shouldbe addressed according to theethical board, the EUCommissionGuidelinesfordatamanagementandtheDataManagementPlan.


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Table5.Methodstoaddresssafetyandsecuritycriticalaspects(DataManagementPlaninD7.3,D7.7&D7.8)

Thread Solution Description

Data exchangebetweenmembers oftheconsortium

Dataencryption Contemporary encryption methods are required toprotecttheprivacyofdata.Accordingtotheencryptionalgorithm, data are encrypted using a public key andthencandecryptedonlybytheownerortherespectiveprivatekey.

Unauthorizedaccesstopartofthedata

Data (Pseudo-)Anonymization

To make data anonymized means that identificationinformation is removed from sensitive data. Name andIDnumbers likesocial securitynumberareexamplesofsuch identification data. The identification data isreplaced with new ID numbers and the records arelinkedtotheidentificationinformationwhichisstoredinadifferentplace.Thisapproachcanminimizeanyriskofsensitivedatapublication.

Makeuseoraccessunusedoroutdateddata

DataDestruction DatacanbedestroyedtoprotectPLWDandotherusers.Some years after the pilot studies (for traceability andaudits) both paper and digital documents can bedestroyed (when the signed consent form is over).Electronic documents containing sensitive information(e.g. medical data) and measurements which theyconsidernotsignificant(e.g.outdated)canbedestroyedsince they are not useful yet. The destruction protocolshouldforeseethepossibilityPLWDandtheircaregiversasownersofthedatatobeabletoerasethem.

Makeuseoraccessunusedoroutdateddata

Profileerasure IfaPLWDandthecaregiver -asadyad-agreetoerase,modifyorblock theaccess to theirprofiles, the systemhastofollowandperformthoserulesinallthecollecteddata and all the information related to those accounts.However, the content created by this accounts canremain in the platform (e.g. discussion forums)anonymized.Amessagetellingthatthisuserhaserasedhis/heraccountwillreplacetheidentityoftheuser.

Unintentionallyjeopardisinguser’sprivacy

DataProcessing

• Antivirusprograms,junkmailandwebsite

avoidance• CredentialstoCAREGIVERSPRO-MMDshouldnotbe

sharedwithanyonenotauthorized• Contactadministratorinstrangebehaviour

detection• Theconsortiumshouldminimizepersonal

informationofanyuserfromcommunicationmessageswithintheconsortiumandencryptwhennecessary

• Deletepersonalinformationandfacesfrompilotphotosfrompublicationsandoralpresentations(PrivacyImpactAssessmentoftheDMP)


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2.3.5 ConclusiononActivities

This section described the activities performed by the CAREGIVERPRO-MMD users thatconstituteby:a)activitiesrelatedtothehealthcaresystemandb)activitiestransferredfromreal life to the platform. Key-points in Activities are summarized in Table 6 per usercategory.

Table6.Activitiesperusercategory

Activities DescriptionspecificationofActivities

Allusercategories

Communication andSocialization

Communication and socialization activities are themost frequent activitiesfor all user categories. This includes at least the following actions: invite aperson in personal circle, accept invitation, post messages and sendpersonalizedmessagestoindividuals

GroupIdentity The‘personalcircle’concept,aswellasthesocialnetworkaroundeachusercancontributetothegrouporcollectiveidentitythatisthesharedsenseofbelonging to a group and sharing common ideas, problems and visions.Collectiveactivities can formbehavioursand individuals findmotivation forpermanent(andwished)behaviourchanges.

Search A search engine ismandatory to help people navigate in a big informationspace. The underlying search mechanism will help people to apply searchcriteria in user’s profiles (name, country, spoken languages, short CV ifavailable, personal preferences) and on the text contents of the platform.Mediacontentcanberepresentedonthesearchenginebyusingmetadataprovidedbytheinitialuploaderortheadministratorsoftheplatform.

PLWD

Information Access articles about physical and mental exercise, lifestyle and creativeactions,self-expressionactivities

Personalization andproactiveness

Interface design adaptation (accessible interfaces), proactive risk detectionactivities

Training Braintraining,diagnosticandtherapeuticactivities likegamesandexercisesforskillsdevelopment,memoryandattentionpreservation.

CaregiversandHelpers

Information Access articles about cognitive decline and dementia conditions, physicalexerciseandlifestyle,treatmentorganizingideasandbestpractices,creativeactions,self-expressionactivities

Self-control andmanagement

Activitieswhichpromoteandguideself-managementonstress,burn-outandguilt in order to equip a caregiver with effective coping mechanisms fordealing with psychological stress ((Self-understanding, conflict resolution,positiveattitudeadoption,takingmoreregularandeffectiverest)


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Personalization andproactiveness

Accesstopersonalizedinformationonindividual’sconditionsandtreatment,medical informationon treatment side effects andways tominimize thoseeffects

Experience Activitiesforsharingexperienceswithmedicalprofessionals,othercaregiversandhelpers,Caféanddiscussionforums,sharingthepublicpartofapersonaldiary

MedicalProfessionals

Development Activities related to the professional development ofmedical professionals(doctors, psychiatrics, physiatrists, neurologists, psychologists, nurses, etc.)like webinars, notifications for community organized happenings,participation in group actions and any other form of informallearningopportunities situated in practice. Possibly, professionaldevelopment creditswould be attributed to participants according to localethicsandpractices(differentlyfromstatetostate)whenpossible.

It should be noted that the online activities in the CAREGIVERSPRO-MMDplatform to support vocational education may not lead to qualification orcredential required to obtain or retain employment. Thus, professionaldevelopment opportunitiesmay offer limited approaches like communitiesof Practice and eCoaching/eMentoring of young professionals from moreexperiencedseniorprofessionals.

System

Notifications Riskconditionsdetection,proactivesecurityactions,

Matchmaking Similarities in conditions, user’s current state, performance, circleconnections

Security Data protection, secure personal profile and circle privacy, recovery fromerror,settinguppriorities,conflictsresolution

Content The status of each user profile, status and component in UI should beupdatedatalmostreal-time

Anerrorpreventionmanagementshouldbetakenintoconsideration

Languageissuesmostlyinuser-generatedcontent

Learningeffect:Themoreusersperformanactivity,themoretheylearnandthe easier it gets. So, by time the most frequent activities will become acommonality,especiallyforfrequentusers.

Safety Notificationsrelatedtoriskdetectioninclosedornotconnecteddevices

2.4 Context

Weidentifythreetypesofcontextsinwhichactivitiestakeplace:a)thephysicalcontext,b)thesocial contextandc) theorganizational context.Thecontext is thesurroundingsofanactivity and there is no activity outside of a context [Benyon et al., 2005]. The study ofcontextandtechnologiesinclude:


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1. Studyoforganizedcaresituation

2. Studyofsocialcontext

3. Studyofphysicalcontext

4. Existingandpotentialtechnology

2.4.1 PhysicalContext

This type of context specifies the place and time platform activities take place and alsospecifiesthephysicalcircumstances,e.g.inhome,mobileonthemove,insideandoutside,internetaccessandquality,noisy,cold,wetordirtyenvironments.

ForCAREGIVERSPRO-MMD,thephysicalcontext is theplaceandtimeusersareconnectedintotheplatform.Theplatformactivityrequiresthatacriticalmassofusers,fromdifferentuser categories shouldbepresentor recently active. For dyads, commonplaces to accessthe platform are home environments and day care clinics. Alternatively, PLWD andcaregiverscanaccesstheplatformwhileonthemove,butthisshouldnotbeconsideredasaoftencase.Therearenotimeconstraintsapartfromthefactthatelderlypeoplemightnotusetheplatformovernightastheytendtohaveearlynights.

On theotherhand, doctors andotherprofessionalsmayhave timeandplace constraints.Theyusetheirofficesandthehardwareavailableontheirworkingenvironmentstoaccesstheplatform.Theyareexpected touse theplatformduring theirworkinghoursandshiftsand thus, the platform’s usage and frequency of use is expected to be less for this usergroupthaninothergroupsduetoprofessionalsincreasedworkload.

Inoverall,thephysicalenvironmentwillbeindoorsinthemajorityofcases.Moreover,thereis no one-to-one link between the physical and activities. Thus, activities may occur invarious physical circumstances at the same time for different users. Personalization andinterfaceadaptationwilleliminatethosedifferences.

2.4.2 SocialContext

The social context describes how the surroundings of the activity are like. Socialcircumstances describe the supportive environment that offers plenty of help, tuitionexpertsathandtosupport,privacyissues,socialnormsthatdictateconditions(e.g.sound,identity). This includes thepresenceofotherpeople around, the visibilityofotherpeopleaccessingthesameplatformorthosewhoparticipate intotallydifferentactivitiesandtheexistingsocialnormsrelatedtotheplaceorthewaytheplaceisused.

Having inmindthatSocialcapital inelderly isvery important,Forsman[2012]provedthatlow frequency of social contactswith friends and neighbours and experiencedmistrust infriendswereallsignificantlyrelatedtodepression[Forsman,2012].Thus,askingPwDorMCIandtheircaregiverstoparticipateinahealthcareplatformwithouttransferringtheexistingsocial structures would not benefit them. The existing social structures have first to betransferred into the platform in order to give a starting point for elderly people inparticipatingintotheCAREGIVERPRO-MMDactivitiesandcommunityandsecondlytoallownewsocialstructuresbecomepartofelderlypeople’s lives.Thesesocialstructures includeusers’ social contactswith familymembers and friends, aswell as the frequency of these


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contacts. New social structures could include users’ reunionwith relatives or friendswholiveabroadoranothercity,ornewcontactswhichcanbecreatedthroughtheplatform.

2.4.3 OrganizationalContext

The organizational context describes how an organization, in our case a clinic, a medicaloffice, or a PLWD’s community interacts with its users and clients. The organizationalcircumstances are influencing power structures, given status to caregivers, patients anddoctorsexpectationsfromauthoritiesandrolestoliveupto.

In CAREGIVERSPRO-MMD this describes how technology changes the communication: a)betweenPLWDandcaregivers(interactionsinternaltothedyad),b)betweendyadsandc)between dyads and other user groups. While talking about medical environments, theorganizational context may affect the PLWD’s behavior or may cause inappropriatebehaviors [Legares-Lemos et al., 2011]. Thus, changes in the organizational context mayaffectthequalityorquantityoftheuser’s interactionintheplatform.Thiscontext ismorerelevantforcareprofessionals,especiallyinamulticulturalprojectwherewehavedifferenthealthcare systems, with different settings and where we expect that the platform isprescribed by the care system. CAREGIVERSPRO-MMD deals with integrated care underdifferent systems and contexts in healthcare systems. This includes the centralization ordecentralizationofthestructuralcontext,othertypesofrolespresentinthelocalhealthcaresystem (apart fromplatformusers) likeexternal serviceproviders, andbusinessprocesseswhichfolloworganizationalpatterns.Thus,weexpectthatallusergroupscanbesensitivetoorganizationalchanges.Saferconclusionscanbemadeafterthefirstpilotstudieswiththenew version of the platform. Table 7 summarises some important points related to theplatform’scontextofuse.

Table7.AnalysisofContextandoverviewofkey-pointsforDyadsandprofessionals

Dyads

PhysicalEnvironment

Mostpeoplewillaccessthroughtheirhomesinnohurry

WirelessaccesstotheInternetmayprovidelimitationsinbandwidth

Outdoorswirelessaccessmaybelimitedorcharged

SocialContext

MostPLWDwillaccesstheplatformwiththeircaregivers(dyads)

Highlevelofsupportwillbeneededforfirsttimeorinfrequentuse

Wheninpublic,avoidtooharsherrormessagesfornotinsultingtheusers

Warningsforrisksandhighpriorityadvicesshouldbedisplayedupfront

Assessmentoftheimpactastowhatlevelthenewsystemwillaffectexistingsocialdynamics

Structuresandthesocialinteractionswithindyads

OrganizationalContext

SupervisionbythecaregiverwillbeneededtomakesurePLWDarebeinghonestwithenteringtreatmentadherenceandprofileinformation


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Tabletsarealwayschargedanddevicechargingisavailablewhenneeded

Internetconnectionisavailableatalltimes(fornotifications)

Professionals

PhysicalEnvironment

Most professionals will access through their workplaces that are clinics and offices raisingsometimeandprivacyfactors

TypicalofficeInternetconnectionsarefastenoughfordemandingprocessesandtransactions

SocialContext

Itisexpectedthatprofessionalswillaccesstheplatformontheirown

Lowlevelofsupportisexpected

Platformissuesmaybediscussedoutsideoftheplatform(wordofmouth)

OrganizationalContext

Mostofthemedicaldatawillbeinsertedbydataintegrators

Wireless Internet connections are expected to be present in all parts of the clinics, sonotificationsinmobiledeviceswillworkregularlyduringtheday.

2.5 Technology

SocialMedia technologies and applications allow people to exchangemedia rich content.This content may be created by users (user-generated content) or others outside of theplatform. Social media include forums, the blogosphere (such as Twitter), contentcommunities(suchasYouTubeandFlickr)andsocialnetworkingsites(suchasFacebookandLinkedIn).Therearetwomajortypesofsocialnetworkingsitesavailable:

Professional:Intendedexplosivelyformedicalstaff.Doctorsandothermedicalprofessionalsidentifytheirexpertiseoroccupationalstatusatsign-in.ExamplesofHealthcarenetworksofthattypeistheDoximity6andAthenaCollector7.

Consumer:Thosetypesofsocialnetworkingapplicationsaredesignedforthewiderpublic.Anyonecancreateanaccountandparticipate incommunityactivitieswithoutrestrictions.The content and discussions are specializedmore depending on the targeted communitysub-groups.Popularexamplesofconsumernetworkingsitesareprofessionalnetworks likeLinkedIn8andthefamoussocialnetworkingserviceFacebook9.AcompletepictureofsocialnetworkingpenetrationworldwidecanbeseeninFigure4.

Table8presentssomeexamplesofappsandothertypesofsocialnetworksforhealthcare.Therearemainlythreetypesofsocialnetworks:a)applications,b)websitesandforumsandc)Socialmediagroups.Thedifferencebetweenthesecondandthelastoneisthatthesocialmediagroupsarehostedinanindependentplatform.

6https://www.doximity.com7http://www.athenahealth.com/practice/athenacollector/practice-management8https://www.linkedin.com9https://www.facebook.com


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Facebook Twitter VKontakte QZone Odnoklassniki Facenama no data

Figure4.Mostpopularsocialnetworkingsitesbycountry[Source:WikipediaCommons]

Othersappearasa setofapplicationswhich sharecommonobjectivesand resources, liketheMindMate.ThisisanAlzheimer’sandDementiasetofappswhichappearlikeaguardianangel ready to help and to entertain. It consists of three different Apps: 1) One for theindividuallivingwithdementia,2)oneforfamilymembersand3)onespecificallydesignedforresidentialcare.

Table8.Examplesofnetworksforhealthcare[UpCity,2014]

Type Name Description

App Doximity Designed for physicians, Doximity10 is asocial network for doctors. Currently itappears to be the largest socialcommunityintheUSA.

App Figure1 Figure111isamobileapplicationtoaccessa networking site which allow medicalprofessionals to share and access imagesof PLWD ailments to trigger discussionsandexchangeexpertise

ForumandWebsite DoctorsHangout Doctors Hangout12 is a worldwide socialnetworking website which aims toconnect doctors (medical students are

10https://www.doximity.com11https://figure1.com12http://www.doctorshangout.com


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welcomed) and create Interaction withvariousmedicalgroups

ForumandWebsite AllNurses This is forum for nursing practitioners toprovide scientific information (mostlyarticles). Users of AllNurses13 can hostquestionsandcollectresponses

SocialMediaGroup American MedicalAssociation

The American Medical Association14 is asocial network to access a union ofphysicianshostedinLinkedIn

App Sermo Sermo15 is another very popularapplication for physicians with over600.00 members. Users can discussclinicalcasesandshareresources.

SocialMediaGroup Medical GroupManagementAssociation

The Medical Group ManagementAssociation16 website is a social mediagroup

App MindMate The MindMate Apps17 is a set ofapplicationsforAlzheimer’sandDementia

Technologiesusedinsocialnetworksdevelopmentaresimilartomodernwebdevelopment.ContemporaryWebtechnologiesincludestandardsocialnetworkingservices,scientificdatavisualization, content management system and user authentication. Moreover,CAREGIVERSPRO-MMDwilladdpersonalization,accessibility,andgamificationtechnologiesintheplatform.

SocialnetworkingtechnologiesimplementsocialnetworkingserviceswhicharetypicalWeb2.0 internet-based applications, while other commonalities unique to current socialnetworking serviceshavebeen identified are [Obar&Wildman2015]: theuser-generatedcontent (UGC), the service-specific profiles created by users and the social networksdevelopmentbyconnectingauser'sprofilewithotherindividualsorgroupsofpeople.

Other technology-related commonalities refer to the communication, input and outputcomponents.Commonvisual controlsareused in interfacedesigns,butuser-friendly sandaccessibletouchscreeninterfacesseemtobeanimportantaspectfortheelderly.hotareasused in touchscreens isgettingverypopular inaccessible interfaces,especially forelderlypeople. For tablets and other mobile devices, virtual keyboards help in text input. Othersources of input, apart fromUserGenerated Content (UGC), come from data integrators,which are medical and clinical personnel dedicated with the responsibility to insertwereresponsible for inserting existing medical data into the system. For person-to-personcommunication, textandmedia-basedmessagesareexchangedbetweenuserprofilesandgroupsofusers.

13http://allnurses.com14https://www.linkedin.com/company/american-medical-association15http://www.sermo.com16http://www.mgma.com17http://www.mindmate-app.com


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Whatmakesoutputmoreinterestingistheuseofvisualizationtechnologiestopresentbigdata(e.g.diagnostics,summaryofPLWDmonitoringdata,overallsocialnetworkingstatus,etc.) in efficientways.Visualization software is used to create visually appealing graphicaldisplays and interface layouts. The underlying technologies include libraries of graphicalcomponents (e.g. interactive charts,Gantt charts, diagrams, etc.) and softwareeditors fordeploying data displays for desktop and web-based healthcare and social networkingapplications.InTable9themostimportanttechnologycuesarepresented.

Table9.MajorTechnologyissues

Technology

Inputs

Pictorial,hotareaandbuttonsselectionintouchscreen

Textinputinbothphysicalandvirtualkeyboard(intouchscreen)

Usercredentialsincookiestospeeduplogonactivities

Automaticinputofscaleresultsintouserhistoryandprofile

Manualinputofmedicaldatabyintegrators(medicalprofessionals)

Outputs

Beep,vibrationandflashingcomponentsontheinterfacefornotifications

Instructionsinhumanvoiceinpriorizednotifications

Avatarstorepresentusersinsocialenvironments(personalcircle,contacts,Cafe)

Shortanimationstoindicatemilestonesandgainedawards

Visualproofsofachievementsforperformancevisibility

Visualanimatedinstructionsforsteppedprocedures(video-tutorials)

Highlightingselectedcomponents,currentactionsandtasks

Printout of achievements, data completion tasks, treatment adherence assessmentresults

Communication

Instantresponsesforuser'sselectionandachievements

DataVisualizationengineformedia-enrichedchartsandinfographics

Reporting engine for personal datamanagement, treatment adherence and scalesresults

3 FocusGroups3.1 Introduction

FollowingtheresultsfromPACTanalysis,focusgroupsandsemi-structuredinterviewswereconducted to collect users’ (PLWD or MCI, caregivers, and medical and healthcareprofessionals)opinionson thecurrentversionofCAREGIVERSPROplatform. In this section


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wepresent theprotocolof these focusgroupsandwepresent the findings fromthepilotsiteswhichperformedtheinterviews(Spain,Italy,UnitedKingdomandFrance).

3.2 TheFocusGroupApproach

Thefocusgroupapproachisamethodinwhichagroupofpeopletakepartininterviewstodiscussatopicpreviouslydefinedbytheresearchers[Edwards&Holland,2013].Whilethenumberofparticipantsdependsonthenatureofthestudy,previousstudiessuggestthatsixtotenpeopleisenough.Individualinterviewswereconductedwherefocusgroupswerenotsuitable. InT2.1 interviewmanagers runthediscussionwithaseriesofquestionstoguidethe course having the first platform prototype and the demonstration material (startingpoint)asstimulustopresenttheplatformtousers.

Participants in focus groupsweredefinedmostlyby theend-user categories as theyweredescribed in section 2 (PACT analysis). Additional groups, like experts,were used to offeradditional knowledge and experience in this approach. All focus groups are presented inFigure5.

Figure5.TheFocusGroupparticipants

Wecanseethattherearesomeoverlappingareas:

• While PLWD are people with Neurocognitive Disorders, other kinds of disorders,suchassensoryandmotordisordersmaybepresentinotherend-usercategoriesaswell.Themostcharacteristicexample is caregivers,either formalor informal,whomayfacesuchkindsofdisordersandthusdesignersshouldtakethisintoaccount.It


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was expected (and finally proved) that accessibility issues could be sensed by thedyads,eitherbyPLWDorformalcaregivers.

• Social workers are caregivers but they are healthcare system professionals also,meaning that they offer their services during working hours and they have topreparedocumentationfortheirclientslikesocialstatusreports.

TheFocusGroups canbeused for generating ideasabout theparticipantsunder researchandthisisespeciallyusefulatthestartofaproject[Edwards&Holland,2013].Ontheotherhand, theFocusGroupscanbeusedduringthedevelopmentofaprojectorat theendtoprovidefeedbackonresultsorforassessment inanevaluationdesign.Actually,bothwereusedinCAREGIVERSPRO-MMD:a)atthebeginningoftheprojecttoshedmorelightintothetargetedusercategories,b)atthedevelopmentstagestoevaluatethenewplatformdesignsand c) at the end of the project to provide feedback on results and to validate the newplatform.

InoverallthebenefitstheFocusGroupapproachhastoofferinCAREGIVERSPRO-MMDcanbesummarizedinthefollowing:

• Participant’s interaction can give insight into their beliefs, attitudes and speciallanguagetheyuse.

• Despite the efforts in organizing focus groups, the immediacy of the feedbackcollectedandthespeeddatacanbegeneratedarebothvaluableforthedesigners

• TheeSurveyengine18,aspartofthenewversionoftheplatformwasgivenpriorityinorder to support the FocusGroups and provide a uniform and automatedway tocollect and report feedback. The eSurvey engine can also support pilot studies inWP5byallowingsitemanagerstoundertakeFocusGroupsonlineifwished[Stewart&Williams,2005].

• FocusGroupswill serve social support andwill prove the strength of themethodused instigmatizedorvulnerableparticipants [Peek&Fothergill,2009] likepeoplewithNeurocognitiveDisordersandtheirfamilymembers.

• Averyparticulartypeofsocialinteractionbetweencouples(e.g.Dyads)isaccessedandthishasbeenindicatedasveryvaluable[Bjørnholt&Regland,2012;Edwards&Holland, 2013]. According to this, one researcher interviews two participantswhoknoweachotherverywell(PLWDandcaregiver).

3.3 InterviewProtocol

Interviews with Focus Groups were performed with respect to a common interviewprotocol.Thisprotocolensuresthatresultsarecomparableandoverallconclusionscanbemadeforallsites,despitelocaldifferences.Alistofrequirementsandcommonapproacheswasappliedontherecruitmentofparticipants, thecontextof the interview,thematerialsandthefeedbackcollectiontools:

Recruitment: The recruitment process made use of common communication media likephone,socialmedia,withinclinic,directmail,etc.Minordifferencesinrecruitmentprocess

18eSurveyengineisasoftwareplatformthatprovidesstandardtools(questionnairesdevelopment,respondersaccessandinterviewsessionsmanagement)forperformingempiricalresearch


CAREGIVERSPRO-MMD


mayhavebeenoccurredbetweenpilotsites.More informationon localprocessesmaybesoughtintheinterviewreportsatsections3.4to3.7.

PhysicalSettings:RegardingInterviewsettings,itwasrequiredthatinterviewspacesshouldbeaccessible,havegoodlightingconditions,avoidinterruptionandhaveprivacy.Intervieworganizerstookintoconsiderationthatthephysicalcontextoftheinterviewmayalsoaffectthesocialcontext(home,clinic,café).

TimeConstraints:Itwaspaidefforttokeepthewholeinterviewprocesswithin100minuteswhenpossible. Inanycase, theprotocolwas flexibleenough toallowa secondmeeting ifneeded.

User Hardware: Demonstrationmaterial and hands-on experiencewith the old version oftheplatformshouldbepresentedindesktopcomputers,laptopsortablets.Thereisnoneedto define specific technical requirements as long as the used devices respond well (fastenough)touser’sactions.

Internet Connectivity: Cable or wireless (WiFi) Internet connection is required. Commonoffice bandwidths should be enough to ensure a uniform user experiences free ofinterruptionsandnetworkdelays.

Used Demonstration Materials: The old version of the platform (available athttp://www.cuidadores.pro/?locale=en)and17videotutorials (videodemonstrations)wereprepared in order to be used as demonstrationmaterial during the FocusGroup process.ThefulllistofthosevideosarepresentedinTable10.

Table10.ListofvideosusedasdemonstrationmaterialduringtheinterviewswithFocusGroups

VideoDemonstrations(mp4videofiles)withcapturesinEnglish(alsotranslatedintoSpanish,ItalianandFrench)

Title Referencelink DescriptionandUserGroups Duration

Login https://goo.gl/JZyF6T Loginprocessforallusercategories 55sec

Profile https://goo.gl/1m6vEE Profile overview for dyads (PLWDand caregivers) as well as fordoctors(foraccessinginformation).

7min,54sec

Posting https://goo.gl/Hj6mfT PostingforPLWDandcaregivers 5min,32sec

Questionnaire https://goo.gl/swCMbq Filling up a questionnaireembedded into the platform forPLWDandcaregivers)(andmedicalprofessionals(forinformation)

5min,51sec

Support https://goo.gl/wvWCbc Support fordyads (PLWDand theircaregivers)

4min,14sec

Doctor https://goo.gl/27qka7 All actions related to the medicalprofessionals

5min,17sec

ConnectingwithOther

https://goo.gl/MNosxp Demonstration of the socialconnectivityfeaturesforPLWDandcaregivers

5min,21sec


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FeedbackCollection Instruments: Interviewswereperformedas interviewswithrespect tocommonquestionnairesusedbyall interviewsites.The listofquestionswhichneedtobecoveredduringtheinterviewinaparticularorderandway(semi-structured)ispresentedinthe Annex A. It should be noted that those questionnaires refer to the minimum set ofquestions used uniformly be all interview sites. Additional questions were inserted byinterviewmanagersinordertocaptureimportantaspectsandaccordingtothelocalneeds.Itwashypothesized that interviewmanagers knew their targetedparticipants better thananyoneelse,sotheywerealsofreetorepeatquestionsbyrephrasingtheminordertomakethingsclearertotheinterviewees.

DemoUserAccounts:Inordertobeabletoperformcertainactionsintheplatform,itwasrequired that user accounts were present at the time of the interview. Those accountsserved all user categories and all local languages of the sites during the interviews (Table11).Thoseplatformaccountswereconsideredmandatory to save time fromcreatinguserprofilesandbecauseparticipantsneededsomekindofmaterialtobepresentintheirdemoaccounts. Otherwise, new user accountswould be empty and some actions could not beperformedatthetimeoftheinterviewunderthetimeconstraintsoftheinterviewprocess.

Table11.ListofdemouseraccountsusedfordemonstrationpurposesduringtheinterviewswithFocusGroups

Language Role EmailFR Doctor [email protected] Doctor [email protected]

ES Doctor [email protected]

UK Doctor [email protected]

UK Caregiver [email protected]

UK Caregiver [email protected]

UK Helper [email protected]

UK PLWD [email protected]

FR Caregiver [email protected]

FR Caregiver [email protected]

FR Helper [email protected]

FR PLWD [email protected]

IT Caregiver [email protected]

IT Caregiver [email protected]

IT PLWD [email protected]

ES Caregiver [email protected]




ES PLWD [email protected]

The interview process: After a short introduction to the scope and the objectives of theproject(~5min),participantsweregiventheconsentformtreadandsignbeforetakingpartintheinterview(~5min).Duringthedemonstration(~20min)participantsweregivenseriesofvideosdependingoftheusercategorytheybelongto.Duringactualuseoftheplatform(~30min),participantsmadeuseofthecurrentversionoftheplatformandtheywereasked


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to perform the similar processes to those they saw in the videos. For elderly users’conveniencethisprocesscouldbeperformedstep-by-step,meaningthatafterashortvideodemonstrationtheywereaskedtoperformintheplatformbeforeproceedingwiththerestof the process. During the questionnaires phase participants had to complete ademographicsandausabilityquestionnairewithclosedquestions (~10min). Lastbutnotleast,theinterviewphase(~10min)gaveparticipantstheopportunitytoexpressthemselvesmorefreelyandgiveadvicetoplatformdesigners.Theinterviewquestionnaireconsistedofopen-endedquestionstocaptureparticipant’sopiniononcurrenttechnologicaltrends,theirattitudestowardstheuseoftechnologyinhealthcare,theirpreferencesagainstgamesandgamification,etc.

Figure6.AscreenshootoftheEnglishversionoftheProfilevideodemonstration

3.4 DescriptionofFocusGroupsParticipants

The Focus Group participants consisted mostly of people who belong to theCAREGIVERSPRO-MMDusercategories.AdditionalgroupswereusedintheT2.1 interviewsin order tohelp in designing thenewversionof theplatform. The agingprofessionals forexample (usedbyCOOSS)extend themedicalprofessionalsbygivingvaluable informationonagingconditions.Inoverall,participantgroupsaredescribedinthefollowinglist:

PLWD.PersonswithMildNeurocognitiveDisorderorwithMildtoModerateNeurocognitiveDisorder (scaled conditions). Those two subgroups were separated whenpossible, but they used the same demonstrationmaterial, they performed theverysametasksintheplatformandalsotheygavetheirfeedbackusingthesamequestionnaire. The differences between PLWD’s subgroups were highlightedwhengivingrequirements.


CAREGIVERSPRO-MMD


Caregivers.FormalorprofessionalwhoprovidescaregivingservicestooneormorePLWD.Caregivers could also be considered as ‘PLWD’ in the platform under certaincircumstances that have to do with caregiver’s health, especially psychologicalconditions.

Helpers. Familymember,neighbouroranypersonable tohelp todecrease theburdenofcare.TheycanparticipateinvarioussocialcirclesrelatedtoPLWD.

Doctors and other Medical Professionals. Health professionals (doctors, psychologists,physiatrists and allied professionals) serve/manage PLWD and may operate withinvarious branches of healthcare like medicine, pharmacy, psychology and nursing.Other professionals who work for the common good of the aging society may beincludedinthisgroup,liketheagingprofessionals.

Social workers. Those professionals are a separate group of platform users. They shouldreceivealertsandnotificationsrelatedtothesocialstatusofthePLWDandconnecttothesocialcockpittomanagepeopletheyareinchargeof.Typically,thosepersonswillvisitPLWDattheirhomesandusetheplatformtoupdatesocialinformation.

Initially, theobjectivewastorecruit20participants for focusgroupsaccordingtotheT2.1description,butafter theBarcelonaConsortiummeeting the teamwasadvised tohaveatleastthe10%ofthepilotstudiesparticipantsandbepreparedfora20%lossduringthetask.Therefore, 74 people were recruited and successfully participated in the interviews. Thisnumber isconsideredtobesufficientforthefirstcycleoftheFocusGroupsstudy.AmoredetaileddistributionofparticipantsperusercategoryandpersitecanbeseeninTable12.

Table12.Interviewparticipantsandusercategories

Focusgroup UHULL COOSS FUB CHU-ROUEN

Total

PLWD 4 2 6 4 16

Caregivers 5 2 6 - 13

Doctors&otherMedicalProfessionals

9 4 6 5 24

SocialWorkers - - 8 5 13

Others(additional)

- 2Helpers6ageingresearchers

1FoundationManager

- 9

Sum 18 16 27 14 74

Interviews were hosted in site’s facilities or at users’ homes, and were performed byresearchersusing thedemonstrationmaterialcreated for theFocusGroups.The interviewprotocol explained previously in section 3.3was respected by all pilots,while therewere


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cases in which sites added more participants and additional questions to sense localattributes,aswellaspeople’scharacteristicsandattitudes.

3.5 PerformedScenariosandUser’sActivities

Interviews were performed after video-demonstration and a live demonstration of theexistingplatform(currentversion).Althoughthenewplatformwilloffernewfeaturesandinnovativefunctionalitywhichismissingfromtheoldversion,itwasveryimportanttotakefeedback from participants on existing functionality. This included common socialnetworkingactivities likecommunication,profilemanagement,searchofpeopleandotherinformationwithin the platform, etc. A complete list of supported activities (organized as‘scenarios of use’) that were evaluated as typical to socialized healthcare platforms arepresentedinTable13.

Table13.CaregiversPRO-MMDScenariosforFocusGroupReports

# Title Description

PLWD

P1 UserAuthentication Userslogintotheplatformusingtheirusernameandpassword

P2 Accessandupdatepersonalinformation(userprofileoraccount)

Usersareaskedtolocatetheirprofilefirstandthentoupdatesomeoftheirpersonalinformation(appearasinterests). A first photo upload or update is stronglyrecommendedinthisscenario.Thesessionendsafter‘SaveChanges’buttonhasbeenpressed.

P3 ManageDisorders Search for a specific disorder and add it to profile.Also search and add a drug as treatment to thisdisorder. Although it can be considered as a part ofS2, disorder management is tested separately as anewscenario.

P4 PeopleSearch Find people to follow and/or friends. Includesexamine common interests and view profile details.The session ends with ‘Add as friend’ or ‘follow’actions.

P5 Wallmessage Publish a message or a web link on the wall andchoose the level of publicity (public or friends). Thiscanbe implemented as a reply to existing post. Alsocan be implemented in public or private cycle (onlyFamilyandDoctors).

P6 Adherenceevaluation Fill up an online questionnaire and read adherenceevaluationreport

P7 Communication Make a contact with your doctor and other PLWD(send personalized message, friendship request or


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invitation)

P8 Support Createanewticketanduploadafile

Caregivers

C1-C8 P1-P8 SameasPLWD

C9 Contactothercaregiver Locateandexchangemessageswithother caregiversin the (digital) café area (experience sharing, askingforadvice,warning)

HealthcareProfessionals(Doctors)

D1 Managedoctor’sprofile Same as P2 but Add/manage information andconnectionstoPLWDasadditionaltasks

D2-D4 P3-P5,C2-C4 SameasPLWDandCaregivers

D5 OverviewofPLWD’sevaluationinterface(cockpit)

Select a PLWD and see his/her Hospital Anxiety andDepressionScale,thetreatmentadherenceandotherevaluationdiagrams

D6 ManageEvaluations Add a new scale for a specific PLWD, enable/disablescales

D7 Contactcaregivers,PLWDand/orotherdoctors

Like C9, but extended to all end-users (PLWD,caregivers,doctors)

D8 Addanewcase Addanewcaseasadoctor

D9 Scientificcontribution Addanewpaperorreviewontheplatform

Helpers

H1-H7 P1,P2,P4-P8 SameasCaregivers,exceptfromP3

SocialWorkers

SW1-SW6

P1,P2,P4,P5,P7,P8 Aselectionoftypicaluser’stasks

SW7-SW10

D5-D9 A combination of caregiver’s and medicalprofessionals’tasks

ThescenariosdescribedearlierwereexecutedbyFocusGroupparticipantsonsites(France,Italy, Spain and UK) during the first T2.1 task period (June-July, 2016) and the relatedinterview reports are presented in the following sections. Those will bring updatedknowledgeonlocalhealthcareandpeople’scharacteristics,leveloftechnologypenetrationandwaysICTcanbeusedinservinghealthandsocialneeds.


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3.6 CHU-ROUENReport

3.6.1 Introduction

The University Rouen hospital recruited participants from three user categories, namelyPLWD(PLWD),DoctorsandotherMedicalProfessionals (Geriatricians)andSocialWorkers.As a university hospital, in addition to delivering medical care to PLWD, CHU-ROUENprovidesclinicaleducationandtrainingtofutureandcurrentphysicians,nurses,andotherhealthprofessionals.Theyperformed interviewsduring June2016,by recruitingpersonnelfrommorethanonehospitalasplatformusers.

3.6.2 Methodology

The actual version of the CAREGIVERSPRO-MMD platform was presented to end-users.Doctors and psychologists involved in the project met on 8th June to select a panel ofpotentialend-userswhocouldaccepttotestandgivetheiropinionontheplatform.Finally,weinterviewed4PLWD,5doctorsand5socialworkers.

These interviews were made during week 3 and 4 of June. Depending on the selectedgroups,interviewsweredonebydoctorand/orpsychologist.

ForPLWD:WeselectedPLWDwithdiagnosedMCI(3)andMilddementia(1).AllthePLWDweretreatedinadaycentreforAlzheimer’sdisease(CHUdeRouen-HôpitaldeOissel).ThetrialwasdescribedtothePLWD.Interviewsweredoneonvolunteerswhoacceptedtotestthe platformand responded to the questions. Allwere able to give informed consent. AllPLWD had already used IT tool or wanted to use it. A doctor (Dr M. BERARD) and apsychologist (L. MALHERBE) were present to help PLWD to use computer. Face-to-faceinterviewsweredone.

Interviewsweredoneon22thand24thofJune

Fordoctors:Alldoctorsaregeriatricians,2ofthemwereorhadbeenworkinginamemoryclinic. They were voluntary for testing the platform and a doctor (Dr I. LANDRIN, Dr ThSIMON)madetheinterviews.ThedoctorsareworkinginrehabilitationcentreinCHU(4)andinCHIElbeuf-Louviers(1).Doctors,PLWDandcaregiversaccountwaspresented.


Forsocialworkers:Socialworkersareworkinginhospital(CHU:2;CHIElbeuf-Louviers:1)orinsocialservices incommunity(CLIC:2).Theywerevolunteersandgave informedconsent.Whereas no social account was created, account of doctors, PLWD and caregivers waspresented.


All trials were done following the protocol below. All materials had been translated inFrench.

1. Introductionandpresentationoftheproject2. Informedconsent3. Videosoftheplatform:eachgroupviewedapersonalizedvideo4. Testoftheplatformanddiscussion


CAREGIVERSPRO-MMD


5. Fill questionnaires (personal information and platform questionnaire. Allquestionnaireswerefilledinreal-time.

3.6.3 Descriptionofparticipants

Intotal14peopleparticipatedinCHU-ROUENinterviews.Amoredetaileddescriptionoftheparticipant’scharacteristicscanbefoundonthefollowingtable.ThescenariossupportedinthislocalinterviewimplementationweredescribedinTable13.

Type CharacteristicsPLWD 4PLWDhadMCI.All hadmild tohigh socio cultural level andmostlyhad

knowledgeonICT.Theyhad77to86yearsold

1PLWDwithmoderatedementiaaged81withhighsocioculturallevelDoctor 5geriatricians; allworked in rehabilitationormemory clinic. Theyarenot

involved in the project. They have a good knowledge on dementia andproblematicsofcaregivers.Theyhavewillingness inusing ICT forworking.Agerangedfrom32yearsto52years.

Socialworker

5 social workers: 3 working in 2 different hospitals, and 2 social workersworking in community for elderly people. All are aware of dementia andcaregiversproblems.Agerangedfrom31to57years.

3.6.4 Results

Theinterviewresultsarepresentedbeloworganizedperusercategory.

PLWD

PartA-Aboutyou User1 User2 User3 User4Sex(*atthetimeofbirth) Male x x x Female xOther(pleaseindicate):{Textbox} Age {Textbox,blockoffanykeystrokethatisnotanumber} 77 77 86 84Typeofmemoryproblem,ifknown(Multiplechoice) MildNeurocognitiveDisorder x x x ModerateNeurocognitiveDisorder xYearoffirstdiagnosisofmemoryproblem(Ifmemoryproblemknown) {Comboboxcontrolwithfirstchoice'Idonotknow'andthenyearsfrom1980to2016} 2012 2014 2013

unknown

MotherLanguage(Multiplechoice) French x x x xWorkStatus(Multiplechoice) Whollyretiredfromwork x x x xIfnotRetired,mainTypeofEmploymentStatus(Multiplechoice)

Worker


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Employee x x xSelf-employedandcontractor x Director OfficeHolder LevelofEducation(accordingtoISCED2011,Multiplechoice)

0-EarlyChildhoodEducation x1-PrimaryEducation 2-LowerSecondaryEducation 3-UpperSecondaryEducation x 4-Postsecondary,nontertiaryeducation x 5-FirstStageofTertiaryEducation x 6-SecondStageofTertiaryEducation Numberofpeopleinyourhouseholdincludingyourself(Multiplechoice) 1 x2 x x x Livingstatus(Multiplechoice) Livingathomeindependently Livingathomewithhealthcareprovidedbyfamilymember x x xLivingathomewithhealthcareprovidedbyprofessionalcarer x Livingincarehome Visual,acoustic,ormotorImpairments(Multipleresponse) Nospecificimpairment x x x xPartB-UseofTechnology/Communicationmeans WhatdoyouusetheInternetfor?(Multipleresponse) Communication(email,videochat,etc.) x OnlineShopping/Selling OnlineEntertainment(video/movies,games,music,etc.) NewsReading Work SocialNetworks Sharinginformation(blogging,photosharing,etc.) Education/Training Lookingformedicaladvice IdonotusetheInternet x x xOther(pleaseindicate):{Textbox} Whichkindofdevicesyouprefer/feelmoreconfidenttouse?(Multipleresponse) PersonalComputer(PC) x Tablet/iPad Laptop Smartphone(Android/iPhone) Other(pleaseindicate):{Textbox} phone phone Whatothermeansofcommunicationdoyouuseforsocializationwithotherpeoplelivingwithdementia?(Multipleresponse)


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Club(reading,games,craft,sport…) x Memoryworkshop(inaninstitution)ordayhospital x x x xForumdiscussionorsocialnetwork Others(Pleasespecify):………………………………... Whatmeansdoyouuseforcommunicationwithyourdoctorandyourcaregiver?(Multipleresponse) Visitathome/doctor'soffice x x x xTelephoneconversation xMailconversation Other(pleaseindicate):{Textbox} Whatmeansdoyouuseforself-managingyourtreatment?(Multiplechoice) Itakemytreatmentdayafterday,withoutpreparation x xIpreparemytreatmenttothedaywithboxes(morning;afternoon;evening) x Ipreparemytreatmenttotheweekwithaweekbox x Idonotpreparemyselfmytreatment Other(tospecify):………………………………….. PartC-GamificationandGames Howoftendoyouplaydigitalgamesofanykind(e.g.puzzles,leisuregames)?(Multiplechoice) Iplaynogames x x x xIbelievethatagame-likeexperiencefromanapplicationorawebpagewouldmotivatemetoparticipate. 1-Stronglydisagree 2-Disagree x3-Neutral x 4-Agree x x 5-Stronglyagree Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldbenefitmore. 1-Stronglydisagree 2-Disagree x x3-Neutral x 4-Agree x 5-Stronglyagree

DocumentRepository-Pleaseindicatehowstronglyyouagreewiththefollowingstatements(1=stronglydisagree;10=stronglyagree) User1 User2 User3 User4

Iencounternoproblemsloggingintothesystem NA 1 1 5Ifoundloggingintothesystemintuitive 7 2 7 2Ipreferadifferentdesignforlogin 8 8 6 4Iencounterednoproblemsinlocatingandupdatingmyprofile(myaccount) NA NA NA 2Ifoundlocatingandupdatingmyprofile(myaccount)intuitive 5 2 4 1


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Ipreferadifferentdesignforprofilemanagement 5 8 8 4Iencounternoproblemsmanagingdisordersandtreatments NA NA 4 1Ifoundmanagingdisordersandtreatmentsintuitive NA 6 8 1Ipreferadifferentdesignforthemanagementofdisordersandtreatments NA 8 3 4Iencounternoproblemsinsearchingandconnectingwithotheruserprofiles NA NA 8 2Ifoundmanagingconnectionswithotherusersintuitive NA 3 8 2Ipreferadifferentdesignforsearchingandconnectingwithotherusers NA 8 8 8

Iencounternoproblemsmanagingpostsandwallmessages NA NA NA 3Ifoundmanagingpostsandwallmessagesintuitive NA 2 6 4Ipreferadifferentdesignformanagingpostsandwallmessages NA 8 6 3Iencounternoproblemsparticipatinginanonlinequestionnaireaboutadherenceevaluationandreadingthereport NA NA 6 4Ifoundparticipatinginanonlinequestionnaireandreadingthereportintuitive NA 3 6 3Ipreferadifferentdesignforonlinequestionnairesandreports NA 9 6 4Iencounternoproblemscommunicatingprivatelywithuserslikedoctors,otherpeoplelivingwithdementia,caregivers,helpersandsocialworkers(sendpersonalizedmessage,friendshiprequestorinvitation) NA NA NA 1Ifoundprivatecommunicationwithotherusersintuitive NA NA NA 1Ipreferadifferentdesignforprivatecommunicationwithothers NA NA NA 5Iencounternoproblemsincreatinganewticketanduploadingafile NA NA NA 3Ifoundcreatinganewticketanduploadingafileintuitive NA NA NA 2Ipreferadifferentdesignforcreatinganewticketanduploadingafile NA NA NA 3

Iencounternoproblemsinactivelyparticipatinginthecafé. NA NA NA 6IfoundactionsrelatedtotheCafeintuitive NA NA NA 4IpreferadifferentdesignfortheCafé. NA NA NA 3Icompletedalltasksrelatedtomyroleintheplatform NA NA NA 3Icanusethisplatformonmyown NA 1 1 1Thisapplicationwasuser-friendly NA 1 1 1Didtheplatformrespondatyourexpectations? NA 1 NA 2Doyouunderstandthenotionofcircleintheplatform? NA 3 NA 2Wouldyouliketoparticipateinthisplatformasagamecharacter(e.g.participateinagamestory,appearasanavatartoothers,havegoalsdefinedinandoutoftheplatform)? NA 8 2NA:Notanswered.Questionswerenotansweredbecausequestionswereeithertoodifficulttounderstandortheyhadforgottenhowtousetheplatformortheydidn’twanttoanswer

Despitesomefunctionsoftheplatformwerenotworkinginlocallanguage;theplatformhasbeenintegrallytested.

Evenwithamilddisease,PLWDhaddifficultiestousetheplatformanditwasnecessarytohelpallofthemduringthewholeevaluation.Theyhadneverusedacomputerortabletfor3


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ofthembuthadamobilephone.Onehadacomputeranduseditforbasicresearchandforcommunication(email).

ThewaytosharewithotherPLWDwithcognitivedisorderswasindayhospitalorclub.

Theywerescepticandconfusedduringthetestandfoundthedesignnotincentivising.Theywerelostwiththenumberofitems(toomany),didn’tunderstandhowtonavigatefromonetasktoanother.Theywerestressedbythedeviceandneedreassurancealongtheinterview.Theyhadgreatdifficultiestointeract(ex:café)

Becauseof ICT low-knowledge, theywereunable toprovide inputs. Theycouldn’tprovidethecontributionaboutwhatICTcouldhelpthemtodealwiththeirdisease.

Theyaskedquestionaboutprotectionofprivate lifeand find theplatformtoo intrusive intheirlife.Theydidn’tfindadvantagesofthiskindofsupportfortheirdisease.

They said they’d likehaving games and couldplay games (stimulation games, crosswords,Sudoku….).

ForSemi-structuredquestionnaires:

Theyweredisruptedbyopenquestionsandcouldn’tanswersomequestionsorrefusedtoanswerthesequestions

NoneofthePLWDhadalreadyusedanapporinternettolearnaboutcognitivediseases.Theymanagetheirmedicalfollow-upwithagendaorwithprofessionals(i.e.:pharmacist)

TheydonotknowhowanICTtoolcanhelpthemtomanagetheirmedications

Theysaidthey’dlikehavinggamesandcouldplaygames(stimulationgames,crosswords,Sudoku,etc.).

Openquestions:

PLWDweretiredafterdemonstrationoftheplatformandmostlydidn’twanttoanswertoquestionnaires.Someofthemhadforgottenhowtousetheplatformandcouldn’tanswertoopenquestions.Onewantedadifferentvocabulary,moreunderstandable.Onethoughtitwastoointrusive,hefellsplatformputhimselfbare.

Doctors

PartA-Aboutyou User1 User2 User3 User4 User5Sex(*atthetimeofbirth) Male x Female x x x xOther(pleaseindicate):{Textbox} Age {Textbox,blockoffanykeystrokethatisnotanumber} 32 49 39 52 52


CAREGIVERSPRO-MMD


MotherLanguage(Multiplechoice) French x x x x xPlaceofwork

{Textbox}CHIElbeuf CHU CHU CHU CHU

Numberofpeoplelivingwithdementiayouareresponsible?(Multiplechoice) lessorequalto25 26-50 51-100 x x xMorethan100 x x Context/Placeofhealthcareprofessionalservices(Multiplechoice) Daycareinstitute Homeofpeoplelivingwithdementia Hospital/Clinic x x x x xCommunitymentalhealthteam YearsofProfessionalExperience(Multiplechoice) Lessthan5yearsofexperience x 6-10yearsofexperience 11-15yearsofexperience 16-20yearsofexperience x xMorethan20yearsofexperience x

PartB-UseofTechnology/Communicationmeans ForwhichofthefollowingclinicalactivitiesdoyouusetheInternetfor?(Multiplechoice) Ordonnance x x x xDiagnosticpurposes x Contactotherprofessionals x x x xContactpeoplelivingwithdementia Contactcaregivers x x Professionalreading x x x x xMedicalforum x Whatothermeansofcommunicationdoyouuseforsocializationwithotherdoctorsandhealthcareprofessionals?(Multipleresponse) Phonecall x x x x xRegularpost x x x x xE-mail x x x x xProfessionalforum xSeminar x x

Other(pleaseindicate):{Textbox} SMSdirectcontact

Whatmeansdoyouuseforcommunicationwithyourpeoplelivingwithdementiaandtheircaregivers?(Multipleresponse) Phonecall x x x x


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Regularpost x x x E-mail x Professionalforum Seminar

Other(pleaseindicate):{Textbox} Directcontact

PartC-GamificationandGames Howoftendoyouplaydigitalgamesofanykind(e.g.puzzles,leisuregames)?(Multiplechoice) Iplaynogames x x x xOnceaweek Onceamonth x Everyday Ifyouplaydigitalgames,canyoutellusaboutyourexperiences?(Multiplechoice) Positiveexperiences x Negativeexperiences Barrierstousinggames Nonchalanceexperiences Other(pleaseindicate):{Textbox} Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldmotivatemypeoplelivingwithdementiaandtheircaregiverstoparticipate. 1-Stronglydisagree 2-Disagree 3-Neutral 4-Agree x x x x5-Stronglyagree x Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldbenefitmore. 1-Stronglydisagree 2-Disagree 3-Neutral x x 4-Agree x 5-Stronglyagree x x

DocumentRepository-Pleaseindicatehowstronglyyouagreewiththefollowingstatements(1=stronglydisagree;10=stronglyagree) User1 User2 User3 User4 User5Iencounterednoproblemsinlocatingandupdatingmyprofile(myaccount) 8 8 9 10 4Ifoundlocatingandupdatingmyprofile(myaccount)intuitive 6 8 9 7 3Ipreferadifferentdesignforprofilemanagement 4 5 10 10 10Iencounternoproblemsmanagingdisordersandtreatments 5 5 NA NA 5Ifoundmanagingdisordersandtreatmentsintuitive 4 5 NA NA 2

Ipreferadifferentdesignforthemanagementofdisordersand 6 5 NA 10 10


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treatments

Iencounternoproblemsinsearchingandconnectingwithotheruserprofiles 4 5 5 NA NAIfoundmanagingconnectionswithotherusersintuitive 3 5 NA 1 10Ipreferadifferentdesignforsearchingandconnectingwithotherusers 7 5 NA 10 10Iencounterednoproblemsduringtheoverviewofthecockpitofpeoplelivingwithdementia? 2 7 9 1 1Ifoundoverviewingcockpitofthepeoplelivingwithdementiaintuitive. 3 7 9 1 4Ipreferadifferentdesignforoverviewingofthecockpitofpeoplelivingwithdementia. 8 5 5 10 10

Iencounternoproblemsmanagingevaluations 3 8 5 5 NAIfoundmanagingevaluationsintuitive 3 7 5 10 NAIpreferadifferentdesignformanagingevaluations 7 7 5 10 NAIencounternoproblemscommunicatingprivatelywithuserslikepeoplelivingwithdementia,otherdoctors,caregivers,helpersandsocialworkers(sendpersonalizedmessage,friendshiprequestorinvitation) 5 NA 2 NA NAIfoundprivatecommunicationwithotherusersintuitive 6 NA NA NA NAIpreferadifferentdesignforprivatecommunicationwithothers 4 NA NA 10 NAIencounternoproblemsincreatinganewcase 6 8 NA NA NAIfoundcreatinganewcaseintuitive 5 5 NA NA NA

Ipreferadifferentdesignforcreatinganewcase 7 5NA NA

NAIencounternoproblemsinpostingmynewscientificcontribution 9 5 NA NA NAIfoundpostinganewscientificcontributionintuitive 9 5 NA 1 3Ipreferadifferentdesignforcreatinganewscientificcontribution 1 5

NANA 10

Icompletedalltasksrelatedtomyroleintheplatform 3 2 3 NA NAThisapplicationwasuser-friendly 2 5 4 3 5Howusefulyouconsidertheplatformtofollowuppeoplelivingwithdementia? 8 8 8 10 10Howusefuldoyouconsidertheplatformtodelayinstitutionalizationforpeoplelivingwithdementia? 9 Didtheplatformrespondatyourexpectations? 2 6 3 1 5Wouldyouliketoparticipateinthisplatformasagamecharacter(e.g.participateinagamestory,appearasanavatartoothers,havegoalsdefinedinandoutoftheplatform)? 1 2 10 1 5

*NA:notanswered

All doctors who accepted to test the platform were geriatricians with experience indementiaandknowledgeoncaregiver’sburden.

Forsemi-structuredinterviews:

Whatmeansdoyouuseformanagingofyourpeoplelivingwithdementiamedicaldataandtreatmentsuggestions?


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AllarecurrentusersofICTforpersonalorprofessionaluse.Theyusetraditionalmeanssuchaspapersbutmoreofteninformaticstechnologytomanagemedicaldataandtreatment.

Whatothercomputerizedmeansdoyouuseforriskdetection,diagnosisandprevention?

TheydonotuseICTtodetect,preventordiagnosedisease.

Whatmeansdoyouuseforscientificcontributionandaccessingscientificmaterial?

Forthem,Internetisaresourceforscientificcontents(viapubmedmainlyaswithnationalwebsitesforrecommendations),aswellasseminars,workshopsscientificpublications,books.

Doyourecommendanapplicationorawebsiteaboutmemorydisorders?Whichonesandwhy?

GeriatriciansrecommendtoPLWDorPLWDsiteslikeofFranceAlzheimerorforum.

WhatkindofresourcesorservicesdoyouthinkpeoplewithMNDorcaregiversmayfindusefulorbeneficialwhenusingonlinewebsites?

TheythinkthatresourcesandsitesthatcouldbeusefulforPLWDorcaregiversare:

- Forumorexchangeofexperience- SitesonAlzheimer’sdiseaselike“FranceAlzheimer”- Sitesofsocialorganisation(i.e.:CLIC,CCAS….)- Sitesinordertofindalistofcontacts(doctors,nurses,etc.)- Onlinehealthrecord- Informationontherapeutics- Informationonthediseaseandcaregiving- Informationonpsycho-compartmentaldisorders- Geriatricsites- InformationonRespitecare

WhatdesignguidelinesorideaswouldyourecommendtointerfacedesignerstomaketheplatformPLWD-friendlyandtoenhanceusability?Any'musthaves'and/or'mustnot'?

Fordesignguidelinesandimproveplatform,doctorsrecommend:

-takingintoaccountthatPLWDandcaregivershavealowknowledgeonICT.

-HaveadesignthatcanhelpPLWDandcaregiverstobrowse

-ThepresentationisnotintuitiveforPLWDandcaregivers

-improvefunctionality,colours,recreational,attractiveness….Evenfordoctor’saccount


CAREGIVERSPRO-MMD


-improvethedesignwithafriendlierdesignforallend-users

-Changethecoloursforbrightercolours

-Fontsizemaybeincreased(eyeimpairment)

-Havelargeicons.Theleftbannerisnotoptimalanddifficulttounderstand.

-Onicons:havemessagetohelpPLWD,caregivers….

-Havelargeemoticons.Choiceofemoticonscoloursisnotoptimal.

-HaveanagendaforPLWD(date,hour,seasonandwhynotweather)

-Nottoomuchinformationinonepage

-Haveafunction“return”

-Issuewithpulldownmenu:toodifficultforPLWDandsomecaregivers

-Havinganiconforsocialinformation

-usewordsthatareeasytounderstand

-Professionalsarenotfriendsbutcreateasection:professionals

-Becarefulwithcolourscodes(riskofconfusion…).Acolourcodeforeachuser.

-Viewonalerts

-Formedications:photoofpills,indicationoftreatment(whatthetreatment’sfor?)Theyhavedoubtsthatside-effectsmaybestressfulandprovokeariskofstoppingmedications?(becarefulwiththemessageconveyed),Remindersfortreatmenttaking->canhelpadherence

-theinitialboxwiththetext“howdoyoufeel”shouldberemovedinanotherplace

-thepossibilitytoseethepasswordwhenlogging

Inwhatwaycouldanonlinewebsitehelpprofessionalstoimprovethecaretheyprovidetopeoplewithdementiaandtheircarers?(information,socialization,supportandadvice,assessmentofoutcomes,followtherapy,etc.).

Awebsitecanhelpprofessionalsbygivinginformationontreatmentadherence,permitstohavealookonburn-outofcaregivers,followbehaviouraldisorders

Anotherinterestwouldbetohaveprofessionalinformationonthedisease(news,recommendations,linkswithinterestingprofessionalsites,etc.)


CAREGIVERSPRO-MMD


ForopenQuestions:

Enumerateparametersandinformationthatyouwouldliketoseewhenyourealizeamedicalcontrolwithyourpeoplelivingwithdementiaevery6month

Doctorswouldliketohaveontheplatform

- Questionnaireonnutritionalintake,BodyMassIndex,afollow-upofweight,- aquestionnaireontreatmentadherence- aquestionnairetofollowevolutionofpsycho-behaviouraldisorders,- activitydailylivingquestionnaires

Pleasesayhowwecouldimprovethedesign(ifdifferentforeachplease,indicateseparately).Designcouldbeimproved:

- Designistoosad.Itneedsmorecolours- Itisnotintuitive- Itisnotuse-friendlyandnotfun- Useicons

Pleaseindicatewhichtasks/stepsweremoredifficulttocomplete.- Onedoctorsaidshehaddifficultiestoselectscales.Nocommentsforothers

Whatwereyourexpectationsregardingtheplatform?

Doctorssaidthattherearedifferentexpectationsabouttheplatform:

- consideringtheplatformitself:design- consideringtheroleoftheplatformforPLWDindailycare(treatment

adherence,socialization,etc.- Consideringtheroleoftheplatformforprofessionals:Improvingcommunication

betweenPLWD,caregiversandprofessionals- Havingasupportforcaregivers:sharingdifficultieswithothers- Havingaroleofsocialization

Whatfeatureswouldyouliketoaddinorremovefromthisplatform?Nofeaturewaslistedbutacommentonconfidentiality(takeintoaccountconfidentialityofinformation)

Doyouconsidertheplatformcanimprovetreatmentadherencefocusonsymptomsrelatedtothedisease?How?PlatformcanplayaroleandcanalertcaregiversandfamilyontreatmentadherenceifaPLWDforgetshismedication.Byhighlightingsymptoms,itmaybehelpfulforfamilyandcaregivers.Bygivingcontents,itmayhelptreatmentadherence


CAREGIVERSPRO-MMD


DoyouconsidertheplatformcanimprovecontrolofthepeoplelivingwithdementiaandpreventotherdiseaseswithPLWDandcaregivers?Onlyforcaregivers.NotforPLWDTheplatformisatooltofollownotforcontrolTheplatformmayhavearoleoncaregiverburn-outdetectionWhatkindofquestionnairesanddata-collectiontoolsyoumightliketobeincludedintheplatform?(formemory,cognition,anxiety,depression,etc.).

- Surveyonfoodintake- Cognitivegamesforstimulation(-addnewserviceslike“games”)

Istreatmentadherenceimportanttoyourpeoplelivingwithdementia?Howawebplatformcouldhelp?Aplatformmayhelpbysendingdifferentalerts:reminderfortakingmedications,reminderforthenameofmedicationsAplatformmayhelptoexplainthesymptomsandthediseaseinordertocopewiththesesymptoms

TheyconsiderthattheplatformcouldimprovethequalityofmedicalworkbycollectingdataonPLWDandcaregivers.Havingthisinformationbeforeconsultationinmemoryclinicmaybehelpfulformedicalteamandalsoforgeneralpractitionerandmayfacilitatetheirwork.

SocialWorkers

PartA-Aboutyou User1 User2 User3 User4 User5Sex(*atthetimeofbirth) Male Female x x x x xAge {Textbox,blockoffanykeystrokethatisnotanumber} 50 42 57 45 31MotherLanguage(Multiplechoice) French x x x x xYearsofexperienceasasocialworker(Multiplechoice) Lessthan5yearsofexperience x x6-10yearsofexperience 11-15yearsofexperience 16-20yearsofexperience Morethan20yearsofexperience x x x Numberofpeoplelivingwithdementiayoufollow(Multiplechoice) lessorequalto25 x x x26-50 51-100 Morethan100 x x Context/Placeofprofesionalservicesoffering(Multipleresponse) Daycareinstitute


CAREGIVERSPRO-MMD


Homeofpeoplelivingwithdementia x Hospital/Clinic x x xOther(pleaseindicate):{Textbox} clic clic

PartB-UseofTechnology/Communicationmeans Whatmeansdoyouuseforcommunicationwithpeoplelivingwithdementia,theirfamilies,doctorsandtheircaregivers?(Multipleresponse) Visitathome/doctor'soffice x x Telephoneconversation x x x x xMailconversation x x x x

Other(pleaseindicate):{Textbox}

xinterviews

Appointmentinhospital;atthebedside;multidisciplinarymeeting

Appointmentinhospital;atthebedside

Whatmeansdoyouuseforcommunicationwithothersocialworkers?(Multipleresponse) Forums/Workshops x xTelephoneconversation x x x x xMailconversation x x x x xBlogs x Socalnetworks


Regularmail;workmeeting

PartC-GamificationandGames Howoftendoyouplaydigitalgamesofanykind(e.g.puzzles,leisuregames)?(Multiplechoice) Iplaynogames x Onceaweek xOnceamonth x Everyday x x Ifyouplaydigitalgames,canyoutellusaboutyourexperiences?(Multiplechoice) Positiveexperiences x Negativeexperiences Barrierstousinggames Nonchalanceexperiences x x xOther(pleaseindicate):{Textbox} Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldmotivatemypeoplelivingwithdementiaandtheircaregiverstoparticipate. 1-Stronglydisagree 2-Disagree


CAREGIVERSPRO-MMD


3-Neutral x 4-Agree x x x x5-Stronglyagree Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldbenefitmore. 1-Stronglydisagree 2-Disagree 3-Neutral x x x4-Agree x x 5-Stronglyagree

DocumentRepository-Pleaseindicatehowstronglyyouagreewiththefollowingstatements(1=stronglydisagree;10=stronglyagree) User1 User2 User3 User4 User5Iencounterednoproblemsinlocatingandupdatingmyprofile(myaccount) 6 4 4 8 3Ifoundlocatingandupdatingmyprofile(myaccount)intuitive 5 4 4 7 3Ipreferadifferentdesignforprofilemanagement 2 4 2 6 6Iencounterednoproblemsduringtheoverviewofthecockpitofpeoplelivingwithdementia. 9 8 9 9 6Ifoundoverviewingthecockpitofthepeoplelivingwithdementiaintuitive. 9 8 9 7 6Ipreferadifferentdesignforoverviewingofthecockpitofpeoplelivingwithdementia. 2 2 2 3 2

Iencounternoproblemsmanagingpostsandwallmessages 1 7 4 9 4Ifoundmanagingpostsandwallmessagesintuitive 1 4 3 7 6Ipreferadifferentdesignformanagingpostsandwallmessages 9 7 8 4 3Iencounternoproblemscommunicatingprivatelywithuserslikepeoplelivingwithdementia,doctors,othercaregivers,helpersandsocialworkers(sendpersonalizedmessage,friendshiprequestorinvitation) 1 3 1 1 1Ifoundprivatecommunicationwithotherusersintuitive 1 3 1 3 2Ipreferadifferentdesignforprivatecommunicationwithothers 10 8 10 8 7Iencounternoproblemsinupdatingsocialinformationofpeoplelivingwithdementia. ND ND ND ND NDIfoundupdatingsocialinformationofpeoplelivingwithdementiaintuitive.

ND ND ND ND ND

Ipreferadifferentdesignforupdatingsocialinformationofpeoplelivingwithdementia.

ND ND ND ND ND

Icompletedalltasksrelatedtomyroleintheplatform 1 1 1 4 2Thisapplicationwasuser-friendly 3 6 3 3 1Howusefulyouconsidertheplatformtofollowthesocialstatusofpeoplelivingwithdementia? 7 7 7 6 5

Didtheplatformrespondatyourexpectations? 6 6 7 5 3Wouldyouliketoparticipateinthisplatformasagamecharacter(e.g.participateinagamestory,appearasanavatartoothers,havegoalsdefinedinandoutoftheplatform)? 6 7 8 4 2

*ND:thisfunctionalitywasnotavailable


CAREGIVERSPRO-MMD


Nosocialaccountwascreatedwhenweinterviewedsocialworkers.Alargepanelofdifferenttypesofsocialworkerswererepresented(hospitalworking,socialserviceincommunity)whichisrepresentationofsocialworkinginFrance.Allhadaworkfocussedonelderlypeople.

Haveyoueverusedanapplicationorawebpageaboutmemorydisorders?Whatwasyourexperience?Threeofthe5socialworkersinterviewedhaveusedwebpagetohaveinformationondementiadiseases.TheobjectivewastogetinformedonthediseaseWhatmeansdoyouuseforupdatingsocialinformationofthepeoplelivingwithdementiayoufollow?

Traditionalmeanslikepapers,aretheprincipaltools.EverysocialworkerusemorefrequentlyICTforpersonalandprofessionalwork.

Theirprofessionalactivityconductsthemtouseprofessionalsitesforsocialprocesses(ex:Alzheimer’sassociation,Trajectoire,Alzheimer’scareplan,sitesspecialisedsiteoncognitiveproblems….)andfrequentlyemails.Forsocialworking,oralcommunicationisimportant.HowtheinternetandICTtechnologiesmightsupportyouormeetyourneedsonsocialmanagement?

TheythinkthatanICTdeviceforthecaregiverisimportantandusefulandcouldbeasupportforthecaregiver.Agoalofthedeviceistobreakdownthesocialisolationandshareexperiencesandhaveabetterunderstandingofthedisease.Theythinkthatprovidingsocialinformationforcaregiversisessential.

AnICTcanbeusefultoupdateinformationbycaregiversandbyprofessionalsandfollowsocialneeds.

Itmayfacilitatecommunicationbetweenpartners(caregiversandprofessionals)

Someinformationisprivateandconfidentialityandsecurityofinformationmustbeprotected

Whateffectswouldyouexpectfromagamifiedhealthcareapplicationorwebpageonitsusers?(e.g.reduceboredom,maximizeengagementtime,treatmentadherence,etc.)Agamifiedappcouldgiveinformationonthediseaseandsocialassistancebye-learning.ItmayreducefeelingofisolationWhatothercomputerizedmeansdoyouuseforriskdetectionandconditionsprevention?None.NoICTavailableinFranceWhatkindofgameswouldyouliketoplayinahealthcareapplication?Forwhatreason?(forskillstraining,leisure,socialization,etc.).Gameslikememorygames,testonknowledgeforPLWDGamesthatdeliverinformationbye-learningforCaregiversandperhapsalsobyvideos


CAREGIVERSPRO-MMD


Howcouldweimprovethedesign?(Colours,fonts,layouts,etc.).Themaincommentsare

- Designisnotfriendly- Thepageis“cold”notuser-friendly.Changeforbrightcolours- Notincentiveandcomplex.Toomuchinformationanditisdifficulttobrowse- Itisnecessarytohaveicons- Someiconsaretoosmall

Pleaseindicatewhichtasks/stepsweremoredifficulttocomplete.

- Sendapublicationisnoteasyforpeoplewithalow-levelonICT- LoginisnotincentiveforPLWD

Whatwereyourexpectationsregardingtheplatform?

TheythinkthatanICTdeviceforthecaregiverisimportantandusefulandcouldbeasupportforthecaregiver.Agoalofthedeviceistobreakdownthesocialisolationandshareexperiencesandhaveabetterunderstandingofthedisease.Theythinkthatprovidingsocialinformationforcaregiversisessential.

Whatfeatureswouldyouliketoaddinorremovefromthisplatform?

Socialworkersthinkthatsomequestionnairesmayprovokeanxietysuchas:sideeffectsofmedications,cardio-vascularrisks

Questionnairesonactivitydailylivingandautonomyarenecessary.Whatkindofquestionnairesanddata-collectiontoolsforscreeningofsocialstatusyoumightliketobeincludedintheplatform?Createquestionnairesabout:needsforhelpathome,knowledgeofsocialsupportandrespitecare;onwhatcaregiversisexpecting…Questionnaireaboutsatisfactiononsocialassistance

Other“open”commentsweremadeonthisplatform

Themainpositivecommentswere:

- Sharingpublicationsisinterestingforprofessionals- Discussionbetweenprofessionalsisimportant- Createalerts- Createaspacewherepeoplecouldjoinandaskforfriends- Sharevideos- “Demystify”medicalinformation- Haveasocial“space”inCaregiversaccount(notinotheraccount):helping

caregiverstofindinformationonsocialresources- HelpingPLWDintreatmentadherence- Haveamoderatorfortheforum- Definethelimitsofprofessionalresponsibility


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- Becarefulintermsofdataprotectionanddatasharing(medicaldatacannotbesharewithsocialworkers)

- Lackofdata->thereisaneedtocreatecontents- Professionalsarenotfriendsbutcreateasection:professionals(doctors,social

workers…)

3.7 FUBReport

3.7.1 Introduction

This section described the followed methodology and the results of the Focus Groupsinterviews performed in FUB. Emphasis was given on the social dynamics and morespecifically on the Social Psychology principles in order to describe the behaviour of usergroupsthatresultsfromtheinteractionsofindividualgroupmembers.Thismaycontributetoseeingawiderlandscapeofsocialinteractionsinandoutofthesocialplatform.

3.7.2 Methodology

Openquestionsaskedinthefocusgroups:

FocusGroup"AgeingProfessional"(clinicalteam).6persons+1foundationmanager

• Doctors,gerontologists,nurses,neurologistsandneuropsychologist

FocusGroup"Socialworkers”.8persons

• Socialprofessionals

FocusGroup"Dyad”(peoplelivingwithdementiaandtheircaregivers)".6dyads(12persons)

• Caregiver,professionalornot,familyornot,ofpeoplelivingwithdementia.• Peoplelivingwithdementia(mildtomoderate).

ForthethreeFocusGroups:

Focusgroupdynamics

1)Informationsessionexplainingtheprojectandtheplatform

• Informationabouttheproject• Informedconsentforthefocusgroups

2)FocusGroupSession

• PersonActionsContextandTechnology(PACT)discussion• InteractionwiththeplatformandPACTprojectsurveys:

People

[Talkingaboutimpactofdementiasintheirlivesand/orprofessional]


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Firststage.Initialanalysis:openquestionsrelatedto:diseasesocialproblems,healthandeconomics

• FromyourpointofviewWhatismostimportant?• Howdoyoudealwiththeseissues?• Whatresourcesareyouusing?(public,private)

Secondstage.Proposals:(openquestionsproposals)

• Wouldyouliketoimprove?• Doyouthinkthattechnologycouldhelpyou?

Activities

[Talkingaboutactivitiesassociatedwiththeimpactofdementiaintheirdailylivesand/orprofessional]

Firststage.Initialanalysis:openquestions:describingyouractivities/needs

• Howdoyoudothem?Prioritizetheseactivities/needs• Whicharethemost/lessimportant?• Howoftendoyouperformtheseactivities?Doyouhavetimeenough?• Canyoudotheseactivities/needsalone?• Ifnot,whoishelpingyou?• Inwhatwaysocial/sanitaryservicescoveryourneeds?

Secondstage.Proposals:openquestions

• Wouldyouliketoimproveyouractivities/needs?• Howdoyouthinktheycouldbeimproved?• Doyouthinkthattechnologycouldhelpyou?

Context

[Talkingaboutpeopleandassociatedprofessionalstotheimpactofdementiaintheirdailylivesand/orprofessional]

Firststage.Initialanalysis:openquestions

• Describesocialcontextyouareintoperformyouractivities/needs• Howisorganizedyourenvironmentforperformingtheseactivities/needs?• Howisorganizedpublic/privatehealthsystemtohelpyouinyouractivities/

needs?

Secondstage.Proposals:openquestions

• Howdoyouthinkyoursocialcontextshouldimprovetofacilitaterealizationofyouractivities/needs?

• Doyouthinkthattechnologycouldhelpyou?

Technology


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[Talkingaboutthefacilitationoftechnologyassociatedwiththeimpactofdementiaintheirdailylivesand/orprofessional]

Firststage.Initialanalysis:openquestionsproposed

• Doyouusesomekindoftechnologytoperformyouractivities/needs?• Doyouhaveanyproblemsusing/applyingthistechnology?(Internetaccess,quality

oftechnology,environmentalconditions,personalaspects...etc.)• Howdoyoucommunicatewithyourenvironmentinordertoimplementyour

activities/needs?• Howdoyoureceive/sendinformationtoyourenvironment?

Secondstage.Proposals:openquestionsproposals

• Howdoyouthinktechnologyshouldimprovetofacilitatetherealizationofyouractivities/needs?

• Sometechnologicalsolutionshouldbecreatedtohelprealizationofyouractivities/needs?


According to the categories of end-users and considering a wider category of AgeingProfessionals,comprehensiveofdoctor,headnursesand,ingeneral,expertsinageing(e.g.servicescoordinator),FUBcollectedatotalof27questionnaires.

Basedonthecategoriesidentifiedintable1,end-usersinvolvedbyFUBare:

UserGroup Enoumerationandsubgroupdescription

PLWD 6users(PLWD)

Caregivers 6caregivers

AgeingProfessional 1doctor(familydoctor)1doctor(neurologist-gerontologist)1headnurse2nurses1neuropsychologist

Socialworker 8SocialProfessionals

Admin 1FoundationManager

3.7.4 Results

In order to define a need detection model, different levels of analysis are considered,referredto:

1. Person2. Activities3. Communication4. Technology


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FollowingthisPACTanalysisform,withtheaimofmakingthemostoutofitandlettingtheparticipantexpressthemselvesabouttheirexperience,knowledgeandprofessionaland/orpersonal wealth in Alzheimer, for the construction and improvement of the platformdesignedintheCAREGIVERSPRO-MMDproject.

Theresultsobtainedfromthesequestionswerethefollowing:

REGARDINGTHE“DYADANDINNERCIRCLE”

The carers group expressed some concerns for the cognitive deterioration such asmoodchanges, lackof recognition; foralterationsofbehaviourandofotherphenomenasuchasinsomnia,whichdonotfacilitatethecohabitationandinciteincomprehensionandisolationofthecarer,fomentingtheirsaturationandtheburn-out.

Fromthecontributionsmade,5categoriesthatthecarersgroupwishtheplatformhadandstrengthenedwereidentified:

Tasks:

Thecuresprovidedbythemaincarersareunderstoodasacompleteattentiontothepersonaffectedbytheneurodegenerativedisease,whichisonlyinterruptedbysomesituationsofbreakortheattendanceofsomesupportgroupsandother institutionsfocusedonsharingexperiences.Thetasksof“caring”involvetheir“global”dedication,includingfromsupplyingdailyactivities tomedicationadministration,aswellas concrete tasksofhygiene, feeding,etc.

It is interesting how the group expresses that “aspects as important as the affection, thekindness,thecommunicationorthesimplecompany,areovershadowedbytheroutinesandtheeverydayassistancerequirements,whentheyareasessentialasfeeding”.Thisisavaluethatshouldbeenhancedbytheplatformasacarer’svalue.

Values:

Thevaluesassociatedtothecarer’s rolerangefromtheneedof feeling innerpeacetodotheir best, to thedifficulty that the sacrificeof givingup their ownneedsonadailybasisinvolves.Itisunanimousamongtheparticipantsthat“ourroleisnotpaidwithanything;wehavetodrawstrengthandencouragementtokeepgoing”.

Whathasthebiggestinfluencewhendecidingwhethertotaketheresponsibilityoflookingafterapersonornotisthe“moralvalue”,consideredanobligationduetothefactthattheperson receiving thecare ispartof immediate family,especially if it is amother-daughterrelationship.Inmanyoccasionsthismoralobligationcausesalackofadirectexpressionofproblems to the closest surroundings, like the family, as the obligation requires theassumption of the suffering. This type of situations, as the group refers, “which when itcontinues fora long time, leads toan isolationof thecarerandcauses isolationsituationsthatinvolveacomplicationforthecarersthemselves.”


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Familyrecognition:

Atthesametime,thereisalackoffamilyrecognitiontowardthedispensedcare,expressing“eventhefactofreceivingapensionalreadyjustifiesthesacrificemadebythecarer”,whichwithoutadoubtimpliesthatthecommunicationchannelbetweenthefamilyandthecarersisevenweaker.

Thedeclineinfamilyrelationships,conditionedbythepoorfamilyrecognitionandespeciallyfrom the maintained person, causes the appearance of a source of tension, creating acontradictionof feelingsandthemoralobligationofhelpingthefamilymember,causingaloss of priority and attention on the individual demands and the carer’s ownwellness. Inordertocounterthistension,thecarersexpress“dealingwiththesituationwiththefeelingofthedutyfulfilled,theself-evaluationofthewelldoneworkandtheeffectsoftheircaresonthe other, helping themselves to feel reassured, satisfied and encouraging themselves tokeepworkingdayafterday”.

And if asking for help, other family members suggest the option of residence entry, anoption which carers avoid due to “moral conflict”. They express that in some occasions,moresupportisfoundinneighboursorfriendsthanintheactualfamily.

Professionalrecognition:

Quite the reverse happens regarding the recognition from healthcare professionals,especially communitarian infirmary, considered “an important point of support as theAlzheimer’s family association, with groups and workshops that offer a very importantsupport”tothecarer.Thesetwofigures,definedas“escapemechanismstounderstandandsharedailyexperiences”,happentobeessentialforcarers.

Theyrecognisethat“establishingfamilyinterventionstrategieswiththeaimofgivingmorevaluetothecarer’srole,aswellasworkingwiththepersonwithcognitivedeterioration inordertoguaranteetherecognitionandto improvethedailyaffectiverelationships”shouldbe done. Furthermore, the carers’ group shows that it would be really convenient to“expandinformationchannelsaboutcarers’supportinamoreactiveway,toreachasmanycarersaspossiblefromthebeginningoftheprocess”.

Recognitiontocarers:

Withinthetasksandcaresupportmeasures,theyappreciatehelpfrominstitutions.Butatthe same time, they think “that they are very limited and are conditioned by financialresources”.

Theyviewtheaccessibilitytomedicalstaffinapositivewayaswellasthetreatmentandtheattentionreceivedfromthem,especiallyinthesocio-sanitaryassistanceambit.

Tosumup,theimprovementmeasureshighlightedbythemare“abettercollaborationandunderstanding by the family,more information in advance both for us and for the familyaboutwhattheywillhavetodo,andthatwe’remoreappreciated”


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REGARDINGTHEMEDICALTEAM:

TheDementiaUnitof theFundaciónSociosanitariadeManresa (FSSM)could interactwiththe platform CAREGIVERSPRO-MMD in order to have the opportunity of checking if itsutilitiesandsections,allofitsareasandcontentpossibility.

The focal group’smoderatorallowed the reflectiononwhichpapers theywant tohave intheplatformasdementiaclinicalprofessionals.Explaininghowtheplatformhastobeusefulfor all its users, to the entire ecosystem around the dyad. From their professional clinicalexperience,theysuggesttothinkabouthowtheplatformcanbeuseful, fromallpointsofview.

Whatroledoyouimaginetheplatformcanhave?

“Asolutionto increasethetreatmentadherencecouldexist.Whentheclinic informs intheplatform which medicine, dose and the frequency, the platform informs the person thatreceivesthemedicationandsomehowinvolvestheirclosecircle informingabouttheuseofthe medicine. If we get to inform about the possible benefits of the medicine, thisinformationwillsupportthetreatment’ssense.”

“Theplatformcanholdquizzes thatcanbedownloaded.The focusgroup’smemberspointout that theywould not be actual ladders, but specific questions that the platformwouldsend to the user. Thisway, a tracking of different parameters, such as life quality, can bedone. And this data can be crossed with a drug’s prescription, thus being able to defineclinicalactionsinabetterway.TheaimwouldbethatasadoctorIwouldnothavetowaitforsixmonthstoknowiftheactionordrugthatIhaveprescribedhashadthedesiredeffectornot.”

Fromthepointofviewofobtainingusefulinformationthoughtheplatformforclinicaluse,thegrouppointsoutthatoneofthethingsthatwouldbemoreinterestingtobearinmindis, for example, asking the user for information about break downs and hospitalisationswhiletheclinicianhasnotbeenintouchwiththem.

Inthetreatmentadherencesection,themembersofthefocusgrouppointoutthatallthespecificdrugsfordementiacouldbeincludedinordertohaveabettercontrol.Forexample:Treatmentstartsinthisdate,theyneedrenovationinthatdate,etc.

About pharmacological issues, the focus group’s constituents comment that through theplatform,caseswherethetreatment isstoppedduetoaprescriptionexpiringwithouttheusercontrollingthesituationcouldbeavoided.Whatcouldhappenisthattheuserdoesnotrealise,sowhentheygotothepharmacytheycannotbegiventhemedication,causingthattheuserrunsoutofthatmedication.Thetreatment,asaconsequence,isinterrupteduntiltheusercontacts theprescriber.That iswhy itwouldbereally interesting tohavecontrolandinformationaboutit.

Anothercontributionthattheplatformcouldofferwouldbe:“PLWDstartatreatmentandbeing able of asking for help in case they are suffering side effects, or feeling sleepier,unstable,etc.”


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Theplatform,fromthemedicalpointofview,wouldbeveryusefultofacilitatethetrackingof thePLWD. Itwouldbedoneon-line, becomingonemoredaily tracking. It shouldneverreplace the on-site visit, but there could be a possibility of making video-conferences orsomethingsimilar inorder tokeeptheusercloser incase itwasnecessary to interactwiththembeyondtheinformationsenttotheplatform.”

ThefocalgroupmembershavedoubtsaboutthefunctioningofPLWDcare.Theyallwonderthefollowing:“ifthePLWDasksaquestion,whenisheanswered?”.TheyexpressthatthiswouldcompromisethemandwouldpossiblycomplicatetheirlivesduetothebignumberofPLWD,whomighthavea lotofquestions.Apossibleanswer to thatwouldbe imposinganumberofrulesinordertomaketheuserawareofthefactthattheirdoctorwillnotbeon-line every single day but theywill do it from time to time, and that they do not have toobligatorilyanswerthequestionstheyhavemade.Butitwouldbeveryappropriatethatthedoctorreceivedwarningsofthemostimportantthings.Theplatformcanhavewarnings,buttheplatformmustnotenslavethedoctor,itmustmaketheirtaskeasier.

Itispointedoutthatitshouldbeacomplementaryactivitytotheon-sitevisit.“Thethingisthatthefitisoftendifficult.Theprofessionalwillalwaysfindthatpersonwhowillinteractina beneficial way, while other profiles will not though not respecting visits, calling twice aweek,etc.”

The focal group members comment about it that: “one thing is the possible suggestionsabout a particular issue, and something different is the very direct questions about thepathology. Then the law on data protection, the involvement in legal issues, etc. takerelevancewhenadocumentisregistered,asifitwasanon-linevisit.Itmustbeclarifieduntilwhichpointitisanon-linevisitoronlyaparticularcommentfromaplatformuserandwhichpointthefigureofthephysiciancanreachduetothelegalinvolvementsthatthismighthavelater. The clinical staff is not physically seeing the PLWD: with no doubt they might besufferingasideeffect,butwecannotdetermineitsorigin.Sometimesitisnotthesameastosee the symptom, it cannot be identified like in the medical office; you can point outinformation, but not the medical visit connotations. Also, this type of direct informationshouldonlybereceivedbytheinterestedperson.Thatishowitmustbeonanethicallevel.Theseinteractionsmustbeprivate.On-lineconsultationsareathing,buton-linedisclosureissomethingcompletelydifferent. It ispossibleto informabouttheeffectsofa specificdrug,andthatisathing,butmakinganon-linevisitaboutasideeffect…itwouldbeamistake.”

It isnecessary that “the information that youwish to receiveand that theuser receives isperfectlyassessed.”“Thisinformationmustbeusedforaclinicalbenefit,withoutitbecomingalegalgrievanceoradiagnosisproblem.Ifitisdeterminedthatauserinformingaboutsideeffectsitisinterestingandtheyexecuteit,theinformationwillbeusedtodecideifanon-sitevisitshouldbearrangedornot.Thiswasnotpossible in thepast,becausethis informationgot lost, and was equally valuable. The platform must facilitate clinical dynamics, notcomplicatethem.

The informationobtained through theplatformmustbeused to improve theassistance. Itmustbebeneficial.”

“Sometimes, delays inassistancemightbecome legal problems.We cannotdownplayon-linecontact.Ithasimportantinvolvements.Fromthemomentthataclinician’sactionhasa


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consequence,wemustestablishbordersintheplatform.Itcanworkwithinformativeeffects.Theusermustbearthatinmind.Consultationsmustbeeminentlyindicative.”

Woulddirectconsultationsmadebytheuserbeuseful?

“Someof themwould, definitely, yes.Without substitutingon-siteonesandwithoutbeingbinding. In other words, that they have the possibility of making a consultation and thedoctortoanswerit,butthatmeansexclusivelythattheprofessionalanswersaquestion,andthat does not mean that they are diagnosing. The user must bear in mind that theprofessional is informing.Nothingelse.Forexample:aconcretedrugmightcausesickness,and the professional informs about that, but that does not mean that the sicknessexperiencedbytheuseriscausedbythetakingofthedrug.Thatistheborder.Thatdiagnosiscannotbemadeon-line.Andevenlesswhenthisremainswritten.Andisbinding.”

Thegrouppointsout,however,that:“Itistruethatthiscommunicationandthisinformationfacilitation are used to lighten the family’s burden, and that is very positive. Just for thisreason,itisalreadyworthittohavethisfunctionintheplatform.”

Theyalsothinkaboutthemoderator’squestions:

“We have an important amount of PLWD.Wemust benefit from the platform.WemustidentifyifthePLWDinfrontofusisauseroftheplatforminorderto,whenneeded,takingtheinformationthattheygivetotheplatform.Thismeansthat,inaway,theplatformneedsto be linked to their clinical record. This way I will be able to make the most out of theplatform.”

Would it be useful for you that the validating and clinical scaleswere uploaded on theplatform?

Onthisquestion,thefocalgroupanswers:

“No,itwouldnot.Mostofthosescalescannotbetransferredtotheon-lineenvironment.

If the scale is self-administered and is about life quality or other aspects then it could bepossible.AMini-mentalwouldbe impossible, theonlyoneswouldbe theself-administeredones,likepossiblytheZaritone;aBarthelwouldbeimpossible,aprofessionalisneeded.”“Totheuseritmightbeuseful,buttotheclinicianitisnot.Theclinicianisinterestedinhavingatracking of the scales they go through. The clinician is not interested in self-administeredones.”

“Anotherpossibilityistocreatescalesaroundtheplatform,aboutaspectsthathelptomakeatracking,sothattheusersthemselvescankeeptheirownself-tracking.”

Wouldadaptingscalesbeusefultofindoutaboutdailyactivity?

“Theyshouldbeverymetricscales,veryevaluable,veryexplicit.ThereistrainingforaMEC.If they are burden scales, or life quality scales, it could beuseful. Thequestions should beveryspecific.Very.


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Forexample:ifthePLWDisaskediftheycaneatalone,whatdoesthatmean?Thattheycancutmeatorthattheycanbringittotheirmouth?BecauseifyoucutitandthePLWDtakesittotheirmouth,willtheybeabletoopenandmixtheyogurt?Theymustbeveryspecificandclosed.Itwouldbeusefulifweachievedascalewithouttoomuchvarietybetweenobservers.

Wouldcontrollingthevisitscalendarthroughtheplatformbeuseful?Themanagementofmedicalvisits?

“We control visits through phone calls, to remind the existence of the appointment. Wecontrolittakingintoconsiderationtheprofessional’savailability,theirguards,holidays,etc.Theplatformcouldremindtheuser;itcouldfacilitatethisjob.”

“Through Gowin (clinical history and on-line appointments management program) themedicalvisitsarecontrolled.Butitwouldbeveryusefultousetheplatformtomanagethiskindoftasks,sincetherealsupportisthepaperagenda.Thetoolthatwehaveneedstobeimproved.”

“Itwould be interesting, for it, to cross data. But inmany occasions, the paper agenda iswhatcontrols it.Thisfunctioncouldbetransferred.Vacations,guards,etc.shouldbetakenintoconsideration.Itwouldalsobeaterritorialadvantage.”

“Automaticcallscouldalsobemade,remindermessagesonthephone,ontheplatform…”

Will thePLWDbeable tomanage theirown information?Would theybeable to reporttheirowninformation?

“Thatwouldbeveryuseful,becauseinmanyoccasionsweneedinformationtocompletethefile,whichwhenobtained,isreallyusefultofacilitateitassoonaspossiblewithoutwaitingforthenextvisit.Forexample:ifthePLWDtakesasleepexamination.Theywilltakeitinanexternalserviceanditwouldbereallyusefulthat,oncethestudyisobtained,thePLWDtellsusthatitisalreadyavailableintheircommonfile.Itwouldimplyagreatadvantage.”

Theplatformmightrequirespecificinformationfromitsusersandkeepingatracking.Iftheclinicalbodyrequiresanactionfromtheuser, theplatformcouldgeneratearequirement,informtheuserandwatchforitsexecution,informingtheclinicalaboutitsachievement.

“Theplatformcannotsubstitutethescaletakingandtheinformationrequiredspecificallyinon-sitemedicalvisits.Itdoesnotmakesenseeitherthatthescalesareavailabletotheusers.The clinical will have to go through them during the visit anyway, even if the user hadansweredthemahundredtimes. Scalesneedtobeadministratedandgonethrough,so inthissensetheplatformwouldnotsavetime,butitistruethataccordingtotheirreportsandtheinformationfacilitatedbytheplatform,theappointmentwiththeuserwillbemoredirectthankstotheamountofinformation.”

“Butknowingwhattheplatformisaskingforisessential.Knowingwhatkindofinformationit might require. This report will be according to the requirements prescribed. Currently,when theneurologist seesaPLWD,anursehaspreviously seen them. If the information isshared, this facilitates the joba lot. Itwouldbe veryuseful seeing this informationon the


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platform because itwould simplify the visit and itwould speed the questions that can beasked.

It takesa lotofminutes to know“howhas it been”, if “have theyeatenwell”, etc. If thatinformationisalreadyrecorded,itisperfect.Thattheybringitpreparedfromhome.”

“Due to electronic prescription (which is not very agile) modification issues, the platformcould also facilitate this process, in other words, currently, the PLWD calls saying that amedication has worked and you need more to be prescribed. If you do not modify theelectronicprescription,theywillnotbeabletogotothepharmacyandgetit.Currentlywhatwedoismodifyit,leaveitinthesecretariatandthepersonhastocomeandgetitandthentake it to thepharmacy.When it is justabarcode.That is it. If it couldbeenabled to theplatform,thentaketheponeorthetablettothepharmacyandjustshowthebarcode,wewouldsavealotoftimeandproblems.Justlikeaplaneticket.Itwouldbeafantasticservice.Everytimewehaveatreatmentthatexpiresbetweenvisits,thepersonhastocomejusttogotosecretariatandtakeit.Ifasystemthatfacilitatedthisprocessexistedintheplatform,wewouldspeedthisprocessupandsolvealotoftravelproblems.Intheendofthedayitisjustabarcode.”

REGARDINGSOCIALWORKERS

Theanalysiswiththeseprofessionalsregardingtheimpactofneurodegenerativeillnessesonthedyad’sand/or theprofessional’severyday lifeandhowtheplatformcould incorporateimprovementsandboostabilitiesisstartedbytalkingabouthowtheAlzheimerisasicknessin which a first diagnosis is established and from then, a series of control visits arescheduled, which will be done during specific periods that might take place between 3months and a year. “It is obvious that thePLWDand the caregiver enter a longperiod ofloneliness, especially due to the widening of the medical visits.” Some point out that“initially, there is a lackofguidanceand specificuseful information to facilitate these firstmeetingprocessesbetweenthedyadandthediagnosis.”

Thegroupidentifiestheneedof“palpableinformationdirectedtothedyad,especiallytothePLWD,thecarerandthefamily.Inanictuscase,thePLWDandtheirfamiliesreceivedetailedinformation, both written and verbal when receiving the diagnosis, about everything thatmighthappenandthatneeds tobe taken intoaccount.However, it isnot like thiswhen itcomestoPLWDdiagnosedwithAlzheimerorwithacognitivedeteriorationillness,andtheirfamilies.”

On the other hand, it is pointed out that usually the carers are people who also sufferpathologies, “they are usually 60 year oldwomen and their health is not excellent,whichimpliesariskfactorforthem.Thatiswhytheirburdenandsurroundingsneedtobeperfectlyidentified in order to organise it so that they can receive help andalso be taken care of.”“This is identified as a key point since taking care of the carer, the personwith cognitivedeteriorationisalsobeingtakencareof.”

“Therearestages inwhichthePLWDdoesnotallowbeingtakencareofsincetheydonotrecognisewhat is happening to them, theyarenotawareof their needsor real problems.Thismakesitmuchmoredifficultforthecarer,worryingthemanduncertainty,forexample:


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howcanyoutransmitacarertoanAlzheimerPLWD(maybetheirpartnerinlife)whocannotgo out on their own, who cannot light the fire without supervision, whose daily activitiesneedtobesupervised?”

“SurelyitallimpliesabothphysicalandemotionaloverstrainthatcandeterioratethecareraswellasthePLWD.Therefore,thePLWDandthecarerareadyad,whichisarelationalunitthatmixesemotions,burdens,responsibilitiesandchallengesthathavetobeassumedbyitsbothmembers,althoughprogressively tipping towards the carer,whowill have toassumemostofthetasksandcares,tryingtocoordinateandinvolvetheirclosestcircle.”

Regardingtheactivities:

The group expresses how the neurodegenerative illness’ impact affects PLWD andprofessionals’everydaylife.

Usually, “the carer does not accept what happens to the PLWD.” Many reactions of thepersonwhoistakingcarearerelatedtothinkingthattheyarejusttryingtoannoythemanddonotunderstandthatthefamilymemberaffectedbyAlzheimerdoesnothavethesameperceptionofrealitythattheyusedtohave.

Participantsunanimouslyexpressthat“thecarercannot,doesnotknow,doesnotwanttosharewhattheyaregoingthroughwiththefamilybecausesometimesassumes it ishisorher only responsibility, unique and non-transferable. Taking care of the sick person is amoral obligation that they need to assume lonely and quietly. Frequently, they losecommunication with their closest surroundings, leading to a point where the burden orpressurereachesunhealthylevels.Thenthecarermightfallill.

A dynamic that generates a “non-communication” of needs and problems begins, causingisolationandevenmorepressureonthecarer.

There are two important aspects for the carer regarding their daily activities and thatprofessionalsidentifyasimportanttotakeintoaccount.

“First of all, findingbreakmoments (tobreath, even if it is just togopeacefully todo thedaily shopping…) and secondly speaking, sharing and knowing and being aware of all thesupportpointsthattheyhavearoundthem.”

Helpingtounderstandthattheyneedthesespaces,momentsandbreaksonadailybasisiscrucialforthecarertobesuccessfulwiththeircaringtasks.Butoften,themoralobligationimposed and misunderstood causes the assumption of a suffering that “has to be felt”,assuming that it is normal and valorising a lot if it is recognized. Socially, there is arecognition that identifies and values the burden.How to break these taboos? The groupthinkstherearetwothingstheplatformshouldworkon:

“Explaining the process thatwill take place during the illness, and that there is not a bigenough reason to focus all the burden on a single person due to the fact that the cared


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person will change and will generate some unintentional problems that will have to beassumedstepbystepandwithenoughsuccessguarantees.”

“Individualeducationandadviceisveryimportant,butthegroupsessions(usuallyorganizedbyassociationsofPLWD’families)areevenmorepositive.Groupspacescanbeusedtoshareand vent, but they are rarely done”.Being able to directly relatingwith people in similarsituationscanbreakbarriers, stereotypes,helpsharing feelings,“aspacewhere thecarerscan findareliefwhentheyrealize that theyarenot theonlyonessufferingproblemsthat,until then, they identified as exclusive and unique. Identifying their own problems in thirdparties approaches the affected person’s point of view on the problem to its solution, bygettingclosertoothers.”

At the same time, experts from the interviewed group point out that themost frequentproblemsshownbycarerswhentakingcareofapersonwhosuffersdementiaare:

“Behaviouralproblems(aggressiveness),lackofresting,alwayshavingtobecarefulwiththePLWD, repeated questions and behaviours by the PLWD (they take off their diaperrepeatedly,theyaskthesamequestiononceandagain…).”

Onthistopic,thegroupstartsaroundofexamplesabouthowcarershavefoundeasyandimaginative solutions to specific problems. They identify the creation of a data basewithsmall advice as important,where everything that the socio-sanitary and family ecosystemcollectsasknowledgeissharedandtransmittedandsubmittedtodifferentpointsofview.

Regardingthecontext:

Onthisaspect,theinterviewedgroupthinksthat“itisveryimportantthattheclosecircleisinformed,sothattheybecomeidentifiablesupportpointsandareconstantlyawareofwhathappens(financialissues,medication,managementofresources...).”

Thewayinwhichfamiliesareencouragedtodoanestimate,botheconomicalandlogistical,is explained, but this is harder when there is not an identifiable or well defined familynucleus.

“The lackof resources in frontofdealingwith theproblem,especiallywhen there is justasinglecarer,makesthetaskfarmorecomplicated.Sometimes,carershappentobeashamedof sharing what is happening to the PLWD, especially because of “what will they think”.Clearly,thiscanleadtoabiggerriskbothforthemandthePLWD.”

“Family surroundings, the dyad’s close circle, must be boosted in order to making themawareofthedailytasks, lettingthemknowthattheycanhelpeven if it is just inapreciseandparticularmoment.”

The intimate circle surrounding the dyad can be of potential help, butmost times, socio-sanitaryprofessionalsdonotencouragethisrole.Themaincarerhasneedsthatusuallyareveryfarfromwhatthefamilycangive.“Identifyingwelltheclosecircleandknowinghowtomanageitwouldhelptosharetasks,eveniftheyareveryconcrete,inordertoreleasesomeburdenfromthemaincarerandmakinghelpmoreeffective.”

Adyad’sbasicneedsmustbefirstly identified,andaneffortneedstobemadetofindoutwhomight be themain characters of the close circle,whomight have a key role. In this


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sense,socio-sanitaryprofessionalsmightidentifysomeconcreteproblemswhichusuallyaredifferent to those identified by the main carer. A good problem and need identificationmethodmustbeestablishedinordertohelpthedyadinamoreeffectiveway.

“There are commonbasic needs in all carers,who professionals identify as: Firstly, havingopencommunicationwiththeclosecircletoavoidthecarer’sisolation.Secondly,keepingtheclosecirclesupportiveasateamandnotlettingthemgivetheirbacktoproblems.”

“Forthat,itisessentialtocapturethemomentinwhichtheintimatecircleprovestobecloseandshowswillingness (children, friends,associations...) sothatsocio-sanitaryprofessionalsfind it easier to connect it directly to the main carer’s needs, avoiding the reach of thedisconnection moment which tends to happen due to the illness’ complexity or, in someoccasions,thenaturalisolationofthisprocessesmentionedabove.”

Inordertodeepenintheidentificationoftheintimatecircleandofhowitcantakeanactivepartwiththeproblem,itispointedoutthat“extendedandopen,notindividualinterviewstofamilymembersandfriendsshouldbedone.”

Therearealsoothercarers,suchastheroleofthe“expertcarer”thatcanreallyhelpotherdyads.Theyarecarerswho,with theirexperience,canhelpothercarers to takedecisionsandsolveproblems.Beingabletoconnectandgetbenefitsfromthisrelationshipshouldbesupported. “Identifying expert carers and making them participate in order to suggestsolutions the surrounding problems would truly help to unblock hard situations.” Thecreationofagroupofexpertcarerswouldhelpothercarerstobeeffectivelyawareofmanyproblems, bringing great knowledge. This fact wouldmean a possibility of expanding thecarer’ssupportgroup.

Regardingtechnology:

Regardingthefacilitationoftechnologyassociatedtotheneurodegenerativeillness’impact,itissuggestedtothegroupiftheyfinddifficultiesonadailybasiswhenusingtechnologytomaketheinformationtransmissionbetweenprofessionalseasier. It is interestinghowtheymention that “currently we go to the houses just using pencil and paper and, later, theinformationisintroducedintotheclinicalcourseandtheinformationissharedduringclinicalsessions,betweenprofessionals.”

Butitisnoticeablehowthisinformationintroducedintheclinicalfileisonlyavailableforapart of the professionals related with a dyad, and that for example it would be reallyinteresting and useful for the socialworker to be able to access: “as a socialworker, themedical team’s information isnotavailable forme, I knownothingabout thewomanwhoasksforhelptotakecareofthePLWD,andIstartfromtheverybeginning.Thisisclearlyverydistressingforthecarer.”

Identifying correctly who is involved in this support process for the carer would be veryimportant;havingthisinformationandorganizingitwouldhelpthesocialworkertobeableto know where to find the necessary resources in order to guarantee the solution to aconcreteproblem.


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TREATMENTversusTECHNOLOGY

Theadherencetothetreatmentisaroundthe30%and,incasesofadvanceddementia,itisonlya10%.

During the first stages, the group finds key points focussed on increasing people’sadherence:

“Whenthefirstdiagnosisisdone,thefamilymembersreceivetheinformationtoknowwhatthemedicationisfor.Theyaretoldthatitisnotacure,butthatitslowsdowntheprocess,andthis leadstoabiggerawarenessof the family.Theyarealsoput incontactwithotherAlzheimerfamilies.”

“Buttheadherenceshouldalsobestrengthenedduringthemedication’sprescriptionperiodbyusingstrategiesthatremindthePLWD’sclosepeopleallthebenefitsofthemedicine.Thiswaytheputrposeandtheuseofthedrugwouldbestronger,increasingtheadherence.Theyhaveextrainformationbecausetheyhavethefacilityofcallingifanythinghappens.Theycankeep a daily contact with the hospital’s professionals. However, the professionals’ groupdiscussesifthefamiliescanreallyhavethisoption(ofhavingdirectaccess).

But justknowingthattheycancall, thattheycanmakecontact,givessafetytothePLWD.That’swhy theprofessionals’ group is suggested to identifywhich typeof communicationwouldhelpeachperson.Arethereotherwaysthatcouldhelp?Wecannotrestrictourselvestoasinglewayofcommunicatingorgivinginformation.

They identify that the information could also be transmitted through e-mail, virtual visits,etc. An analysis should be done on this issue so that the platform could share thisinformation.

3.7.5 Conclusions

FIRSTAPPROXIMATIONTOTHESYSTEMOFMETACATEGORIESANDFOCUSGROUP’SEMERGINGCATEGORIES

Thefollowingtable isafirstapproximationtothegroupofmeta-categoriesandcategoriesthat have emerged from the focus groups’ information. On amethodological level, therehavebeencreated4thematicareas(People,Activities,ContextsandTechnology),includingquestionsdirectedtoworkingoneachoneofthem.

Subsequently, after the data analysis, an emerging categories (inductive) and meta-categories system has been built. To do so, the Glaser & Strauss (1967) “constantcomparisons” system has been used. It combines the coding of inductive type categoriesthroughthebasicdataitemsthatexplainthephenomenonwewanttoaddress.

Thisinformationhasbeenclassifiedandgroupedbycomparison,contrastandordination,innucleus of shared meaning. Data traceability has been always maintained, so that eachcategory allows identifying the set of units of meaning associated. With all this, we’relooking for the participants’ attitudes, perceptions and opinions, rather than looking forgeneralizations or transfer to other fields or contexts. Therefore, the different involvedgroups’pointsofviewarereflected.


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Atotalof6meta-categoriesand30categorieshavebeenidentified

METACATEGORY

CATEGORIESBYGROUP

MEDICAL-HEALTHCARE SOCIO-SANITARY DYAD

0.PLATFORM’SOVERALLCONCEPT(Blackbox)

MA.0 SS.0 DD.0DD.0.1

1.PLATFORM’SAIM MA.1MA.1.1

SS.1SS.1.1SS.1.2

DD.1DD.1.1DD.1.2

2.PLATFORM’SUSE

MA.2 SS.2

DD.2

3.COMMUNICATIONSYSTEMANDCHANNELS

MA.3

SS.3

DD.3

4.BUILDINGOFSYNERGIES

MA.4 SS.4 DD.4

5.EMERGINGVALUES(thattheplatformmusthaveandenhance)

MA.5.1MA.5.2

SS.5.1SS.5.2SS.5.3

DD.5.1DD.5.2DD.5.3DD.5.4

IDENTIFICATIONOFMETACATEGORIESANDCATEGORIES

METACATEGORY

CATEGORIESBYGROUP

MEDICAL-HEALTHCARE SOCIO-SANITARY DYAD

0.PLATFORM’SOVERALLCONCEPT

(Blackbox)

0.Registrationandexperiencestudyingspace

0.Platformasacohesivecore,connectoranddisseminator

0.Referenceandanchorpointatdoublelevel:forprivateuseandfortakingcareofthePLWD0.1.Humanizationandempowermentofthedyadregardingtheillness

1.PLATFORM’SAIM

1.Conductingofglobalandintegralstudies-Sharingcases-Sharingsolutions-Sourceofinformationalresources1.1.Decisionmaking

1.Supplyofresourcesattwolevels:a)professionals;b)PLWD-dyad,andofdifferenttypology:

- Informationalandformativeresources.Sharingcasesandsolutions

- LogisticalResources- Emotional

Resources1.1. Sharingcases/solutions

1.Supplyofdifferenttypesofresources:

- Informationalandformativeresources.Knowing/Disseminatingcasesandsharingsolutions

- LogisticalResources- Emotional

Resources1.1.Specificinformationabout:-Cures


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1.2.Decisionmaking

-Treatment-Evolution1.2.Decisionmaking

2.PLATFORM’SUSE

2.Trackingatdoublelevel:a)PLWD;b)dyadRegarding:-Agenda-Warnings-Prescriptions-Drugs-Datacross

2.TrackingandevolutionofthePLWD-dyad.Improvementoftheclinicalrecord’smanagement.

2.Trackingofthedyad’sbothnucleuses.Everydaymanagement’simprovement(tasks).

3.

COMMUNICATIONSYSTEMANDCHANNELS

3.FluidanddirectcontactwiththePLWD,throughtwomodes:-on-site-on-line

3.Knowingthedyad’ssurroundings/context:-Detectingsynergiestounitethedyad’simmediatesurroundings.

3.Contactingotherprofessionals,otherdyads,otherexperts,etc.

4.BUILDINGOFSYNERGIES

4.Cohesionbetweenprofessionalsinthedyad’sproandbenefit.

4.Cohesionbetweenprofessionalsinthedyad’sproandbenefit.

4.Supportforcarersfrom:-medical-healthcarestaff-Socio-sanitary-Family-Surroundings:fromothercarers,toexperts,etc.

5.EMERGING

VALUES(thattheplatformmusthaveand

enhance)

5.1Rigour5.2Accessibility

5.1Rigour5.2Accessibility5.3Clarity

5.1Recognisingthetaskdone5.2Innerpeace5.3.Senseofduty/Moralobligation5.4.Perseverance,steadiness

Todefinethemeta-categories,westartedoffwithanalysinghoweachcategorywasworking,observingthatthefollowingneedsfortheplatformappearedinanaturalway:

-Platform’soverallconcept:Thismeta-categoryisdefinedas‘howshouldtheplatformbe?’

The fact that focus groups answer unanimously, a space where what people know,experienceorignorecanbeevoked,wasanalysed.Whilebeingaspacetoregisterallofthisknowledge,experiencesand information, it isalsoaconnecting link forprofessionalsbothfromtheclinicalsideaswellasfromthecarer,consideredalsoaprofessionalofhealthcare.

-Platform’saim:Thismeta-categoryisdefinedastheultimategoalthattheplatformshouldachieve. The groups agree unanimously and consider that it should be a base of cases,solutions to different situations, resources (not only informative but also logistic andemotional), where solutions to cares and to evolutionary moments that will eventuallyhappen can be found, and at the same time, all this informationwould facilitate decisionmakingsincethosecouldbeshared.


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- Platform’s use: Defined as “what type of functionality would you give it” to enrich themeta-category of the platform’s aim. Participants from the groups identified veryenlighteninglyaspectssuchas:adoubleleveltrackingofthePLWDandthedyad,aswellasofanagenda,warnings,prescriptionsandpharmacologicalcontrol;thatitcouldbeusedbythe dyad to keep its tracking and that it allowed medical-healthcare and socio-sanitaryprofessionals to observe their evolution or difficulties and have a communication channelbetweenthem.

-Communication system:Definedasoneof themost importantmeta-categoriesbyallofthegroups,itiswhatallowstheplatformtohaveasmoothanddirectcommunicationwiththePLWD,bothonon-lineandon-sitelevels,allowingtoknowthedyad’ssurroundingsandcontext in order to detect their needs and help with their closest environment, while itallowsthedyadtobeincontactwiththeevaluationsandtrackingbytheprofessionals.

- Building of synergies: It is defined as a value that the platform should provide, thecohesion between professionals and the dyad, and the dyad with the medical, socio-sanitary, family staff or other groups of experts in order to unify efforts for everyone’sbenefit.

-Emergingvalues:Itisdefinedasameta-categorythatshouldgiverigour,accessibilityandclearnesstotheplatformaswellasrecognitiontothecaresthateachgroupperform.

In this emerging values meta-category, regarding the dyad’s category, the categories ofsenseofduty/moralobligation/perseveranceandsteadinessdonotregardtotheplatform’scharacteristicsbuttothosethatitshouldgrantorprovidethecarerwith,whenmakinguseofit.

3.8 UHULLReport

3.8.1 Introduction

In order to improve the CAREGIVERSPRO-MMD platform, individual semi-structuredinterviewswere heldwith peoplewith dementia ormild cognitive impairment, caregiversandprofessionalsinordertogaintheirinputandfeedbackonthedesign,developmentanduser-friendlinessoftheplatformpriortothepilotstudy.

3.8.2 Methodology

A mixed method, user-participatory research design was adopted. Individual, semi-structured interviews were carried out in order to gain in-depth feedback from keystakeholders.ParticipantswereinterviewedbetweenJunetoJuly2016,andinterviewedinvarious locations depending on the participant. For peoplewith dementia and caregivers,interviewstookplaceeither intheirownhomesor ina localmeetingcentre.ProfessionalswereinterviewedattheUniversityofHullandattheHullMemoryClinic.

ParticipantswereexplainedthepurposesoftheresearchusingtheParticipant InformationSheet(seetheAppendix)andweregiventhechancetoaskanyquestions.Eachparticipantgave informed consent and understood that taking part in the research was voluntary.During the interview process, participants were asked to complete a demographic


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questionnaire,whichincludedansweringquestionssuchastheirdateofbirth,gender,workstatus, dementia diagnosis, number of years caring. The demographic questionnaire wastailored to each type of participant group (see description of participants in 2.1 below).Participantswerethenshownaseriesofshortdemonstrationvideos,showingthemhowtousetheplatform.WethendemonstratedtheactualplatformtoparticipantsbyloggingthemintotheplatformusingaMaclaptop.Eachparticipantgrouphavetheirownuniqueaccount,todemonstrate thedifferent functionsof theplatformtomeet theneedsof thedifferentusers.Wegaveparticipantsaround30minutestotrialtheplatform.ParticipantswerethenaskedaseriesofstatementsthattheyhadtoratebasedonaLikertscaleof1-10(1being‘stronglydisagree’,10‘beingstronglyagree’),onhowtheyfoundusingtheplatform.Finally,participantsthencompletedasemi-structuredinterview,providingqualitativefeedbackonthe design, content and user-friendliness of the platform. Again, each participant groupwereaskeddifferentquestionsaccordingtotheirroleintheplatform.

TheUniversityofHullactivelyparticipatedinthedevelopmentoftheprotocolforthisstudyaswellasinthedevelopmentofthetestingmaterials,suchasquestionnaires,consentformsandparticipant informationsheets.Ethicalapprovaltoconductthisresearchwasobtainedby the University of Hull. Approval was also sought from Line Mangers to interviewprofessionalsandfromtheButterfliesMemoryLossSupportgroup.

3.8.3 DescriptionofParticipants

Threeparticipantgroupswereselected;

1. Peoplewithdementiaormildcognitiveimpairmentlivinginthecommunity2. Caregiversofpeoplewithdementiaormildcognitiveimpairment3. Professionalsworkinginthefieldofdementiacare

Thesegroupswereselectedastheyreflectthetargetaudienceoftheplatform.Fourpeoplewith dementia or mild cognitive impairment, five caregivers and six professionals wereinterviewed (N=15). People with dementia and caregivers were recruited through theButterfliesMemoryLossSupportgroup;acharitableorganisationruninHullandEastRidingof Yorkshire. Professionals were recruited through the University of Hull and the HullMemoryClinic.

3.8.4 Results

PeoplewithDementia19

OpenQuestionsfromPersonalInformationQuestionnaire

Question1.Haveyoueverusedanapplicationorawebpageaboutmemorydisorders?Whatwasyourexperience?

19PleasenotethatonePLWDdidnotmanagetocompletethetestingsessionbecausetheirattentionwasdistractedevenduringthedemonstrationvideos.


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One person reported previous experience with websites for Parkinson’s disease, but noexperience with websites for memory problems or dementia. Two people reported nopreviousinternetexperience.

Question 2. What means do you use for managing of your personal medical data andtreatmentplan?

Onepersonreportedthattheyrecordtheirclinicalappointmentsonacomputer.TheyalsohaveaLifelinedevice,smokeandheatalarms,andacarbonmonoxidedetector.Thesecondperson owns a smoke alarm. The third person relies on their caregiver for rememberingmedicalappointments.

Question3.HowtheinternetandICTtechnologiesmightsupportyouormeetyourneedsontreatmentmanagement?

Twopeoplesupportedtheviewthattheyarenotsureorawareofhowinternetcouldhelpto meet their needs. The third person reported that technology, such as a touchscreendevice,wouldbegood in theory for remindingpeople’smedications;however, thiswouldrequirethemtocarrytouchscreenorphonewiththemallthetime.

Question 4. What effects would you expect from a gamified healthcare application orwebpage on its users? (e.g. reduce boredom, maximize engagement time, treatmentadherence,etc.)

People(N=2)providedanegativeresponsebecausetheycouldnotfindanypositiveeffects.Athirdpersonreportedthatgameswouldbeinterestingtotraintheirbrainaslongastheyarefamiliarwiththegame.

Question5.Whatkindofgameswouldyouliketoplayinahealthcareapplication?Forwhatreason?(forskillstraining,leisure,socialization,etc.)

Two reported no interest in online games. Another person reported that they would beinterestedingameswhichtrainthebrain,suchascross-words.

OpenQuestionsfromPlatformQuestionnaire

Question1.Howcouldweimprovethedesign?(Colours,fonts,layouts,etc).

Colours: The smiley faces are helpful (N=1). One person reported that ‘the colours arereasonable’ but a bigger contrast between the font size and the background would behelpful.

Font size: Threepeople reportedabigger font size is necessary. Some signs, suchas littlearrows to controlwho can see your information (public/friends/private) should stand outmore (N=1). A larger screen, or creating more pages to present the same amount of


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informationwouldbehelpful(N=1).Theoptiontoenlargethescreenwouldalsobehelpful(N=1).

Question2.Pleaseindicatewhichtasks/stepsweremoredifficulttocomplete.

Onepersoncouldnotprovideareplytothisanswerbecausethefontsizewastoosmallandtheycouldnotusetheplatform20.Anotherpersonarguedthatitwasdifficulttounderstandthe purpose of ‘Circle’. Completing the questionnaires in the ‘Circle’ and searching forfriendswas difficult (N=1). Theywould prefer to be able to type someone’s name to findthem.

Question3.Whatwereyourexpectationsregardingtheplatform?

People(N=3)couldnotprovideananswertothisquestionbecausetheywerenotsurehowtheplatformcouldhelp.

Question4.Whatfeatureswouldyouliketoaddinorremovefromthisplatform?

One person reported thatmy ‘Circle’ should be separated from ‘Treatments’. The secondpersoncouldnotprovideananswerbecausetheywerenotsurewhattheplatformisabout.Athirdpersonbelievesthatitwouldbeinterestingtoaddfoodrecipesintheplatform,ortobeabletosharefoodrecipeswithotherusers.Inaddition,videocommunicationandvideocallscouldbeveryhelpfulforcontactingpeoplewholiveaway(N=1).Onepersonreportedthatitwouldbehelpfuliftheplatformcouldshowthedateandtime.

Question5.Whatkindof self-reportedquestionnairesanddata-collection tools youmightliketobeincludedintheplatform?(formemory,cognition,anxiety,depression,etc.).

Onepersonwasnotkeeninusingthequestionnairesbecausetheyfeelitisembarrassingtoshare any problems and conditions they have. The second person reported they couldcompleteonlinequestionnairesiftheyownedadevice(e.g.computer),buttheydidnotfeeltheyhaveaproblemthattheyshouldmonitor.Althoughthethirdpersonwasnotinterestedin questionnaires, they would not mind to complete any questionnaires which might beusefulforhealthprofessionals.

Questions6&7.Howdoyouunderstandwhatisasocialnetworkanditsbenefits?

Couldyoudescribeinyourownwordswhatisahealthonlinecommunityanditsbenefits?

Onpersonwasfamiliarwithusingsocialnetworks(Facebook)andonlinehealthcommunity’pageswithin this network, such as the ‘ButterfliesMemory LossGroup’ page. The second

20Pleasenotethatthispersonwaswearinghisglassesduringthewholetestingsession.


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person was not familiar with social networks. The third person believes that socialcommunicationisveryimportanttothem.

Question8.Howsharingyourexperienceswithothersandaskforsupportmakesyoufeel?

Oneperson reported that,although theycould share informationwithothers, the sharingfunctiontoselectwhocanseeyourinformationisnecessary.Forexample,theywouldnotlike to share information about medical information. A second person would feelembarrassedtoshareinformationwithpeopletheydonotknow.Thethirdpersonwasnotworriedaboutsharing information intheplatformandbelievesthatsharing information isimportanttoseekhelpandadvicefromothers.

Question9.Doyouunderstandthattheresultoftheonlinequestionnaireswillservetoalertdoctorsormembersofmycircleincaseofemergency?Howthatfeaturemakesyoufeel?

The‘Friend’sectioncouldbeusefultoseekhelpwhenneeded(N=1).Twopeoplereportedthat they would not have any problems to share this information with others, includingcaregivers,doctorsandotherhealthprofessionals.

Question10.Istreatmentadherenceimportanttoyou?Howawebplatformcouldhelp?

Onepersonbelievesthatalertsandreminderswouldnotbehelpfulbecausetheyprefertouse calendars and they are used to them. The same person believes that alerts andreminders couldbehelpful forpeople livingalone.The secondpersonbelieves thatalertsand reminders could be helpful for future memory problems. The second person alsoreportedthatalertsandreminderswouldnotbeuseful tothemnowbecausetheydonothave any memory or medical problems. The third person believes that alerts andnotifications in the platform could be ‘better than nothing’; however, a loud alarm fornotificationswouldbeusefulbecausepeoplecannotusetheplatformalldaylong.

Caregivers


Question1.Haveyoueverusedanapplicationorawebpageaboutmemorydisorders?Whatwasyourexperience?

Themajorityofpeople(4outof5)respondedinapositiveway,andreportedthattheyhaveexperienceinusingwebsitesformemoryproblems.ThreepeoplehaveusedtheAlzheimer’sAssociationandtheButterfliesMemoryLossSupportGroup’swebsites.Twoof themhaveused also Google search engine to search for problems related to dementia. The thirdpersonreportedpreviousexperienceonlywithwebsitesforphysicalproblems,notrelatedtomemory problems or dementia. Another person reported no previous experiencewithapplicationsandwebpages.


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Questions2&7.Whatmeansdoyouuseformanagingofyourpeoplelivingwithdementiamedicaldataandtreatmentplan?

Whatmeansdoyouuseformanagingthetreatmentofyourpeoplelivingwithdementia?

Peoplereportedthattheyusecalendars(N=2)orjusttrytorememberandremindtotheirlovedonestheirappointments (N=2).Tomanagemedication, theyuseNomads (N=1)oratrayinabasket(N=1).

Question3.HowtheinternetandICTtechnologiesmightsupportyouormeetyourneedsontreatmentmanagement?

Theplatformcouldbeusefulforremindingtheirlovedone’smedicationandappointments(N=2),buttheywouldpreferanyremindersandalertstobereceivedviafamiliardevicestothem, such as phones (N=1). Monitoring PLWD mood would be helpful as well (N=1).Anotherpersonwasunsure for theusefulnessof aplatformbecausepeoplewhohave touseitonafrequentbasis.OnepersonreportedthattheydonotbelievethatInternetorICTdevices can help themmore than themeans they are currently using (calendar and tray)because their loved onewould not be able to understand their use. For the purposes oftreatment management, it would be helpful if the platform shows the date, time andweathertopeopleinordernottomisstheirclinicalappointments.

Question 4. What effects would you expect from a gamified healthcare application orwebpage on its users? (e.g. reduce boredom, maximize engagement time, treatmentadherence,etc.)

All people (N=5) believe that there might be positive effects of games on the platform,especiallyifthesegamesprovidememoryandbraintraining(N=2).Apositiveeffectisbeingin contact with other people through games, if team/collaborative games are available(N=1).

Question5.Whatothercomputerizedmeansdoyouuse for riskdetectionandconditionsprevention?

Three people reported that they use vibrating smoke alarm systems, placed under theirpillow.Onepersonmentioned that theyhave their doorbell connect to awireless device,whichflashesandproducesaloudsoundwhensomeoneringsthedoorbell.Handlerailsarealsoused in stepsand toilets (N=1).Heat sensorsand smokealarmsareplaced inside thehouse(N=1).Finally,twopeoplereportedthattheyownalifelinependantalarm.Theycanpressabuttononthedevice,andmedicalhelpwillarrive.

Question6.Whatkindofgameswouldyouliketoplayinahealthcareapplication?Forwhatreason?(forskillstraining,leisure,socialization,etc.).

Twooutoffivepeoplewouldnotbeinterestedingamesontheplatformbecausetheyfindita‘wasteoftime’(N=2)orbecausetheyarenointerestedingames(N=1).Anotherperson


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stated that they could try the games if they are available. Two people reported that,although theyarenot interested ingames themselves, thegamesmightbe interesting forotherpeople. Twopeoplebelieve that theywouldbe interested in leisuregames, suchascardgamesor timemanagementgames,whilememoryandbrain traininggames, suchascross-wordsandSudoku,wouldbeinterestingaswell(N=2).

OpenQuestionsfromPlatformQuestionnaire

Question1.Howcouldweimprovethedesign?(Colours,fonts,layouts,etc).

Colours:Twopeoplereportednoproblemswiththecoloursoftheplatform.Anotherpersonfelt that there is not enough variety in colours and pictures and that there is ‘no use ofhavingwhiteletteringonawritebackground,Icannotseeverywell,Ineedabiggercontrastsuchasblacklettersonwhitebackground’.Thethirdpersoncouldnotprovidefeedbackforthecoloursbecauseitissomethingdifferentandnewtothem.

Fontsize:Peopleunderlinedtheneedforbiggerfontsize(N=4),ortheoptiontoenlargetext(N=1),while another person thought the font size is adequate.One person reported thatthereisnotenoughvarietyinlettering.

Layout:Threepeoplereportedthatthe‘Café’functioncouldbeimprovedbecausetherewasanotherwordcoveringtheword ‘Café’ (N=1). Inaddition,theword ‘Café’ isnotveryclearandthenameisconfusing(N=3).Onepersonsuggestedtorenamethe‘Café’to‘Forum’orsomething similar. Other suggestions are to rename the function ‘Private messages’ to‘Messages’(N=1),separatethequestionnairesfrommy‘Circle’functionandrenamethemto‘Questionnaires’. Hence, symbols for private messages and alerts would be better to bereplacedwithwords(N=1).‘Following’canbeconfusingforPwD(N=1).Foranotherperson,thedesignandlayoutisverycleartothem.

Question2.Pleaseindicatewhichtasks/stepsweremoredifficulttocomplete.

One person reported that visiting the ‘Café’ and finding my ‘Profile’ was challenging.AnotherpersonbelievesthatPwDwouldneedhelptocompletetheir‘Profile’.Twopeoplebelievethattherearenodifficultpartsoftheplatform,oncepeoplebecomefamiliarwithit,butitwouldnotbeeasytouseforpeoplewithdementia(PwD).


People were not able to answer this question because they have not used the platformenough (N=1), because they ‘need to see it further developed’ (N=1), or because it issomething different and new to them (N=1). One person also reported that it could beuseful for people being diagnosedwith dementia in future, if they are introduced to theplatform early enough. Another person reported that they expect help and information


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whenneeded.Contactinghealthprofessionalsandfindinglocalisedinformationisa‘brilliantidea’(N=1).

Question4.Whatfeatureswouldyouliketoaddinorremovefromthisplatform?

The selection between public or private settings, the ‘Circle function’, and the ‘Support’sectionseemtobeuseful(N=1).Onepersonreportedthat‘Iliketheassurancethatmedicalpeoplewill beon thewebsite’.Anotherpersonbelieves theymightuse the ‘Café’ sectionand they cannot see anything missing from the platform because there is no cure fordementia, and people can only get any information available. Two people confirmed thatthereisnothingmissingfromtheplatform,buttheplatformforPwDshouldbeverysimple(N=1). On the other hand, one person found it difficult to navigate around the platform.Another person believes that her loved one will not understand or will find judgementalotherpeopleintheplatformiftheydonotknowthem.The‘Friends’functionisnotusefulbecause not many people in their social environment ‘have the same interest regardingmemory’andthus,twopeoplewouldprefertobeabletotypenamessothattheycanfindtheir friends.Finally, itwouldbe interesting to include informationaboutopportunities toparticipateinresearchinthearea(N=1).

Question 5. What kind of questionnaires and data-collection tools you might like to beincludedintheplatform?(formemory,cognition,anxiety,depression,etc.).

Threepeoplereportedthatquestionnairesaboutmemoryandmood/howpeoplefeelwouldbeuseful.AfourthpersonreportedthatPwDmightbeindenialandnotwanttoread/seeinformationorquestionsaboutdementia.Inaddition,thispersonreportedthattheyarenotinterested in monitoring their loved one’s mood because this is a private information.However,onepersonbelievesthatcaregiverswillcompletethesequestionnairesonbehalfof their loved ones, because PwD are not aware of memory loss or other dementiasymptoms and thus, theywould not bewilling to complete any questionnaires related todementia.

Questions6&7.Howdoyouunderstandwhatisasocialnetworkanditsbenefits?

Couldyoudescribeinyourownwordswhatisahealthonlinecommunityanditsbenefits?

Threeoutoffivepeoplewerefamiliarwiththeterm,whichtheyunderstandasnetworkingandgettingconnectedwithothers.Anotherpersonbelievesthattheterm‘socialnetwork’refers to people ‘sharing life and events on internet’. A reported benefit was contactingpeoplewholiveaway(N=1).

Question8.Howsharingyourexperienceswithothersandaskforsupportmakesyoufeel?

Onepersonreportedthattheywouldnotlikeinformationtobepublic,andtheyapprovedthechoiceofselecting theaudience foreach information (public/friends/private).Another


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personsupportedthattheycouldshareinformationaslongastheirlovedone(PwD)wouldapproveit.Thethirdpersonbelievesthattheywouldnotsharemuchinformation,buttheymightbeinterestedandreplyoninformationsharedbyotherpeople.Twopeoplewouldbeinterestedinsharinginformationaslongastheycancontrolwhocanseethisinformation.

Question9.Doyouunderstandthattheresultoftheonlinequestionnaireswillservetoalertdoctorsormembersofmycircleincaseofemergency?Howthatfeaturemakesyoufeel?

Threepeoplebelievethattheideaofsharinginformationwithahealthcareprofessional inthe‘Circle’(e.g.aCommunityPsychiatricNurse)isgood.Onepersonwassatisfiedwiththefactthatpeoplearenotobligatedtocompletethequestionnaires.Anotherpersonbelievesthat itcouldbeusefulforPwDtocompleteonequestionnairepermonthfortheirgeneralcondition.

Question10.Istreatmentadherenceimportanttoyou?Howawebplatformcouldhelp?

All people (5outof 5) reported that treatment adherence is important to them.Threeofthem believe that alerts and reminders could be helpful. The third person believes thatreminders couldbehelpful forpeoplewhoare introduced to theplatformwhen theyarediagnosedwithmemory problems or dementia. People being diagnosed in the past havealreadyadoptedcopingstrategies,andisnoteasytointroduceaPwDtonewstrategies.Oneperson believes that the platform could be useful for them if it is used as a diary torememberclinicalappointments.Finally,anotherpersonbelievethatphonereminderwouldbeusefultothem.

DoctorsandHealthProfessionals

Professionals include: 1 Specialist Occupational Therapist; 1 Lecturer in nursing; 1Pharmacist; 1 Specialist Nurse; 1 Assistant Clinical Psychologist; 1 Higher GradedPsychiatryTrainee(ST4).N=6


Question 1. What means do you use for managing of your people living with dementiamedicaldataandtreatmentsuggestions?

ThreeprofessionalssaidtheyuseanonlinesystemcalledLorenzo,whichisusedtorecordallPLWDcontacts, informationanddocumentationaboutPLWD.OneprofessionalmentionedthattheproblemwithLorenzoisthatitreliesonpeoplescanninginpaperdocumentsintothe system,and sometimes the system letsyoudown.Threeotherprofessionals reportedthattheyfollowpeople’sprogressbypenandpaper,andPLWDhavetheirowncasenotes.One professional described how this can be problematicwhen going towork in differentwork bases or going to people’s home, as they do not have easy access to their data orinformation.Anotherprofessionaldoesdictations,andanotheroneusesanonline system


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(SilverLink)forrecordingallclinicalnotes,appointmentsandletters.Allprofessionals(N=6)sendletterstoGeneralPractitioners(GP).

Question 2.What other computerizedmeans do you use for risk detection, diagnosis andprevention?

ProfessionalsuseLorenzo(N=2),orSilverLink(N=1),andassistivetechnology(N=4),suchascalendarsandclockswiththedateandtelephoneswithlargenumbers/simplifiedTVremotecontrols,fallpreventiondevices,navigationsystems,telecaresystems,e.g.‘Justcheckingin’system,whichmonitorsaperson’smovementsintheirhome;Lifelines(apendantyoupullonincaseofanemergency),orPLWDpassport(detailedpersonalandmedicalinformationabout a person). One professional reported that they have an Occupational Therapist intheirteamwhorecommendsassistivetechnology,liketelecare.

Question 3. What means do you use for scientific contribution and accessing scientificmaterial?

Three professionals reported that, as part of their professional role, they read scientificarticlesaboutresearchontheinternet.Otherprofessionalsreceiveregularteachingfortheirrole(N=1),attendconferencesandpresentationsonnewresearch(N=2),receivetrainingonany changes in mental health law as well as regular updates from an online medicalcompany relating to their speciality (N=1).Other professionals are subscribed to scientificjournals (N=1), suchas theBritish JournalofPsychiatry,use staff forumsormeetingsat aMemoryClinic(N=1),watchandreadthenewssincedementiaappearstobea‘hottopic’atthe moment (N=1). They have the BBC news application on their smartphone, and aresubscribed to the ‘Health’ section where they receive updates. Another professionalsnetworkswithcolleaguesorusesGoogle searchengine toupdate their selveswith recentresearchfindingsandnewtreatments.Finally,aprofessionalsaid“itwouldbelovelytogetupdatedaboutnewinformationthroughemailorviaawebsite”.

Question4.Doyourecommendanapplicationorawebsiteaboutmemorydisorders?Whichonesandwhy?

All professionals (N=6) recommend the Alzheimer’s Society website(https://www.alzheimers.org.uk/)asithasagoodgeneralsourceofinformation,itiseasytouse, it is useful with plain language, it provides information on most common types ofdementia, it provides information on medication and advice on social activities. AnotherprofessionalrecommendsATDementiawebsite(https://www.atdementia.org.uk/)asithasalotofinformationonAssistiveTechnology.AskSarawebsite(http://asksara.dlf.org.uk/)isalso recommended to people. In this website, people are asked simple questions underdifferent topics (e.g. ‘Are youworried about having a fall?’) and they areprovidedwith atailored reportwith suggestions.Oneprofessional said they found that increasingly,morecaregiversareusingFacebookandTwitterandso“I’vebeenpointingtowardsorganisationsthatuse FacebookandTwitter in a goodway thatprovidegood snippetsof information”.TheprofessionalrecommendedtheAlzheimer’sSocietyonTwitterandtheCrisisPrevention


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Institute(CPI)onFacebook.Anotherprofessionalreportedthattheproblemtheyhaveisnothaving access to localised information easily and “websites having outdated information”.People also like to use the Google search engine for side effects and benefits of anti-dementiadrugs theyhavebeenprescribed.Anotherprofessional reported theywouldnotroutinelyadvisetolookatwebsites–‘youhavetobemindfulofcontent’.

Question 5.What kind of resources or services do you thinkMND or caregiversmay findusefulorbeneficialwhenusingonlinewebsites?

Professionals reported possible beneficial effects of assistive technology (N=2), includinggadgets, calendars, clocks, andmedication boxes, information and support about how tomanageparticularly difficult behaviours or problems caregivers face (N=5), or informationaboutlocalservices,groupsandevents(N=4),aswellasaboutbenefitstheycanclaim(N=1).The majority of professionals (5 out of 6) underlined the importance and usefulness ofpracticalinformationandsupport,suchasPowerofAttorneyforplanningthefuture,“whatarethenextstepsafterreceivingadiagnosis?”,‘whatif’situations,suchas‘whatdoIdoifmymumhasa fall’,or ‘whatdo Ido ifmydadstartstowanderthestreets’.Another fourprofessionals findeducationalmaterial fordementiauseful. Informationaboutmedicationmanagementcanbehelpfulforcaregivers(N=2).Fourprofessionalssupportedtheviewthatonlineforums,suchas‘TalkingPoint’ontheAlzheimer’sSociety,canbenefitpeoplebecausecaregivers or PwD themselves can share information or help and support each other andprovide reassuranceona long termbasis,whereasclients in theNHSare seenbrieflyandthendischarged(N=1).Inaddition,seekingadviceandcommunicatingwithotherhealthcareprofessionals can be helpful (N=2). Other beneficial services and resources can becommunicatingwith others (N=1) to reduce loneliness, reminiscence therapy (N=1), braintraininggames(N=1),andfollowingorrecordingpeople’streatmentprogressonanonlinesystem(N=1).

Question6.WhatdesignguidelinesorideaswouldyourecommendtointerfacedesignerstomaketheplatformPLWD-friendlyandtoenhanceusability?Any 'musthaves'and/or 'mustnots'?

Professionals(N=6)suggestedtheplatformshouldbesimple,clear,withadementia-friendlydesign,uncluttered,easytouse,veryuser-friendly,intuitive,consistent(doeswhatissays),withaccessiblelanguage,noadvertsor‘popups’,nottoomanyclickstogettosomething,having a search facility, no hidden buttons. Four of them reported that they do notunderstandthefunctionofthethreelittlelinesatthetoprightofthepage.Oneprofessionalrecommendedtoavoidanyfunctionsthatminimisemenusas itcanbeconfusing.Anotherpersonsuggestedcolourfulwords,maybeinboldorbigletters,onthetopofthemainpagefordirectingpeople todifferentwebpagesof aplatform.A fewprivacy settingswouldbeeasier for PwD and caregivers to understand instead of having toomany privacy options(N=1).


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Question7.Inwhatwaycouldanonlinewebsitehelpprofessionalstoimprovethecaretheyprovide topeoplewithdementiaand their carers? (Information, socialization, support andadvice,assessmentofoutcomes,followtherapy,etc.)

Ausefulwebsitecouldprovideinformationandsupportoveralongerperiodoftimeinsteadofprovidingonlyshort-terminterventionsonaface-to-facebasis(N=3).Awebsitecouldalsoreassureprofessionalsthattheyhavearesourcethattheycansignpostpeopleto(N=1),andenablecommunicationwithotherPwDorcaregivers(N=2).AwebsitecouldalsorecordPwDand caregivers’ information because when their clinical appointments are booked for acoupleofweekslater,importantinformationmightbeforgotten(N=1).Awebsitecouldalsoprovidequestionnaires and feedbackwithguidanceonwhetherpeopleneed to seekhelpfrom their GP or a pharmacist (N=1). Another person reported that awebsite could helpthem gain a better understanding of their clients’ activities and thus, professionals couldhelpandsupporttheirclientsinamoreefficientway.Anonlinewebsitecouldalsoprovidelocalised information about resources and events, as well as enable communicationbetweenhealthprofessionalsandPwDorcaregivers.Ontheotherhand,someprofessionalsreportedtheycannotseeanybenefitsofonlinetoolsintheirclients(N=2).

OpenquestionsfromPlatformQuestionnaire

Question 1. Enumerate parameters and information that you would like to see when yourealizeamedicalcontrolwithyourpeoplelivingwithdementiaevery6month

Professionals found it difficult to reply to this question. Some data for information theywouldliketomonitorisprovidedinQuestion9below.Onepersonreportedthatuserswillnotable toprovideallmedical information that theplatformasks for, suchas cholesterollevel.

Question2.Pleasesayhowwecouldimprovethedesign(ifdifferentforeachplease,indicateseparately).

Colours: Pastel colours can be calming for PwD, whereas some people may prefer boldcolours with big colour contrast between buttons and background colours (N=2). Oneprofessionalfindsthecolours‘boringbutclear’.

Font size: Not busy webpages and backgrounds could help people with eye-relatedconditions,suchascataractsorglaucoma,aswellaspeoplewithhearingproblemstoreadthe contentof theplatformmoreeasily (N=2).Oneprofessional reported that in theNHStheyuseArialfontsize12forPLWD,asitiscleartoread.Inasimilarway,audioinstructionscould be another way to support people with vision problems (N=1). Two professionalsreported thatabigger font size isneeded forolderpeople, and that anoption toenlargetextcouldbehelpful.Ontheotherhand,oneprofessionalbelievesthatthecurrentfontsizeiseasytoread.

Layout:Themajorityofprofessionals(4outof6)suggestedtoremovetheoptionto“follow”friends,andkeeponlythe“addfriend”option.Thelayoutwassimplyandclear(N=1).Oneprofessionalsuggestedtoremovethefunctionthatminimisesthesidemenubecauseitcan


CAREGIVERSPRO-MMD


be confusing for people and not know how tomaximise it. Another person suggested tomovefunctions,suchas‘MyCircle’,tothetopofthemainpageanduseboldandbiglettersto indicate different webpages and functions within the platform. Less options in PrivacysettingswouldbelessconfusingforPwDandcaregivers(N=1).Forexample,peoplecouldbeasked to indicate “Who can seemy contact details? (this includesmy telephone number,address)”,“Whocanseemyprofile? (this includesmyname,dateofbirth,profilepicture,motto, posts – exclude avatar as nobody understands what this is)”, “Who can see mymedical information? (this includes my medications, treatments, allergies, questionnairedata), “Who can sendme friendship requests?”. If thePrivacyoptionswereonly ‘Public /Friends/MyCircle’,itwouldbeeasierforpeopletounderstandandmanagethesesettings.Three professionals found interesting that people can find friends according to theirmatching interests; however, a search facility to find friends could also be helpful. Oneperson also reported that it would be more appropriate to suggest friends who attendsimilargroups(suchasmemorygroups),or liveinthesamearea.Althoughthefunctionofthe“Café”seemsinteresting,itcanbemisleadingforPwDandcaregivers(N=2)andthus,adifferent word, such as ‘Talk’, could be clearer (N=1). One professional suggested that itmightbeagoodideaforPwDorcaregivertobeabletogiveemergencycontactdetailstoanassignedhealthcareprofessionalfromtheir“Circle”,forexampleincasethecaregiverisonholidayor if theybecame ill themselves. Twoprofessionals suggested that caregiversmayappreciate having an account that is separate or different to PwD accounts (e.g. maybechangethedesignorcolours).Oneprofessionaladvisedtochangethewaypeoplerespondtoquestionnairesbycombiningthesmilies,thetextandthecircleinoneclickable/tapareasothatpeoplewillnottrytotaponthefaceorthetext,ratherthanthelittlecircle.Threeprofessionals advised that the icons/symbols may not bemisleading for people and theysuggestedtousebothawordandanicon/symboltorepresenteachfunction,forexampletoaccessprivatemessages,usetheword‘Messages’aswellasthepictureoftheenvelope,orforthenotifications/alertsfunction,usetheword‘Notifications’aswellatthepictureofthebell. Two professionals suggested to let people personalise the colour scheme of theiraccount or profile. One professional would prefer their main page to include differentinformation,suchasherclients’profilesinsteadofacalendar,andadifferentmainpageforPwDandcaregiversinsteadof‘What’sonyourmind?’.Amoreclinicalaspectoftheplatformcouldbemoresuitable.Onepersonfoundtheword‘MyCircle’confusing,whereasanotherpersonwould prefer to replace theword ‘Support’with ‘Technical support’ or ‘How to…’becausetheirfirstthoughtwasthatthisfunctionisaboutprofessionalsprovidingemotionalsupporttopeople.Finally,professionals(N=6)wereunsureaboutwhatthe‘3smalllinesinthetoprighthandcorner’ofthepagewerefor.

Question3.Pleaseindicatewhichtasks/stepsweremoredifficulttocomplete?

Allprofessionals(N=6)wereunabletouseprivatemessagingduetothelimitedfunctionalityoftheplatform.Forthesamereason,theywereunabletousethefunctionfor“Createnewuser”, and to post their own research articles or cases in the Bibliography section. Inaddition,allprofessionalswereunsureabouthowtomessageaPLWDoracaregiverontheircaseload.


CAREGIVERSPRO-MMD



Professionals were not able to reply to this questions because they do not have anyexpectationsfromthisplatformyet.However,oneprofessionalreportedthattheplatformcouldprovideuseful information tomakeadiagnosis, including levelsof functioning,PwDandcaregivers’concerns.Providingthis informationbeforeseeingPwDandcaregiverscanhelp toavoidupsettingPwDwhensharing theirdifficulties.Also, ifaperson is completinginformation in their own home they may answer questions more honestly or accurately.Also, itwouldhelp theprofessional in their role tobeable tohaveevidence toprovideadiagnosis in borderline cases of dementia (i.e. someone who has mild difficulties butwarrantsadiagnosisofadementia).

Question5.Whatfeatureswouldyouliketoaddinorremovefromthedoctors’platform?

Fourprofessionalsweresatisfiedwiththecontentoftheplatform,suchasthebibliographyand the caseload for PwD and caregivers. One professional suggested a short tutorial orguidecouldhelppeopleusetheplatform.Anotherprofessionalsuggestedtobuildininstantvideochat,sothatasacommunitypharmacisttheycouldgiveadviceandsupport.Anothersuggestion isto includeaddinganaudittrail,e.g.“Welcomeback,this iswhatyoudid lasttime you logged on”, to remind people what they have done previously on the platform(N=1).Anotherpersonmentioned that itmaynotbeagood idea to letPwDorcaregiversinput theirownmedical information,as theymaychange itwhichcouldhave implicationsfortheirtreatmentplanandinterventions.Anotherprofessionalunderlinedtheimportanceofkeepinga recordof screenshotsofanyadvice that theygive toPwDandcaregiversasevidence, or if there were some kind of way of storing the message that a healthcareprofessionalhas senthadadvice to someone.This is in case thereareanydisputes in thefuture,forexamplepeoplemayremovethepostorreaditoutofcontext.Twoprofessionalswouldprefer tohave theirownpersonalisedbibliography,andownselectionofcasesandarticles,aswellastheirownonlinelibrary.Moreover,sharingcasesandarticleswithotherprofessionalscouldbehelpful(N=2).Anotherpersonwasinterestedinaprofessionalforumwhere professionals can discuss cases or interesting research articles, confidentially, andprovideadviceandsupporttoeachother.Othersuggestionsweretohaveareal-timechat(N=1),ortosharePwDandcaregivers’calendarwithhealthcareprofessionalssothattheirsecretary can see their availability and organise any appointments and send them onlineinvitationstoremindtheseappointments (N=2).Anotheruseful remindercouldbesenttoPwDandcaregiverstocompletecertainquestionnairespriortoclinicalappointments(N=1).One person reported that it would be helpful for other professionals if clinicians coulduploadmedicaldataintheplatform,suchasreportsandbrainscans.TipsfornutritioncouldalsobeusefulforPwD(N=1).

Oneprofessionalfeltthatthebaratthetopofthepagewhereithasprivatemessagesandalerts should be only for professionals, perhaps to talk to other professionals, or remindthemappointmentsandevents.TheprofessionalsuggestedthatwithinthePwDcockpit,orPwDandcaregivers’individualpages,thereshouldbethefunctiontocontactoralerttheirclients.AnotherpersonwouldbeinterestedinarisksectionwithinthePwDcockpit,suchasrisk to self, self-neglect, self-harm, suicidal attempts, risk to others, safeguarding issues,vulnerability.Also,caregiverscouldupdatetherisksectionwithrecenteventsoccurredthat


CAREGIVERSPRO-MMD


neededreporting,andalerttheprofessional.Professionals(N=2)wouldliketobeprovidedwithinformationfor localresourcesandgroupstorecommendtotheirclientsthroughtheplatform,aswellas toobtainconsentandaccessPwDandcaregivers’profilesandforumsandrespondtotheirquestions(N=2).Finally,onepersonsuggestedtoprovidemessagesorpop-upwindowstouserstoletthemknowthatthenextpageormoreinformationwillbepresentedtothemsoon,sothatpeopleknowwhattoexpect.

Question 6. Do you consider the platform can improve treatment adherence focus onsymptomsrelatedtothedisease?How?

All six professionals believe that the platform could improve treatment adherence byutilisingtheremindersoralertsaboutclinicalvisitsoraboutthetime,quantityandcolourorshape of each drug. In a similar way, the online forum (café) may improve medicationadherence because people can ask support and advice about medication, for example ifsomeonepostsamessagesayingtheyhaveupsetstomachfromanewanti-dementiadrugthey have been prescribed, someone elsemay comment back advising that they had thesameproblembutthatitwentawayafteracoupleofweeks(N=1).Anotherpersonbelievesthat treatment adherence could be improved because PwD and caregivers gain a betterunderstandingofmedication,potentialsideeffectsandbenefits.Also,this informationcanbe easy to read and summarised on the platform, compared to the lengthy PLWDInformationLeafletsthatcomewithmedicationpacksthatmaynotbeeasytounderstandor follow. One professional reported that PwD and caregivers should decide their selveswhethertheyareinterestedinreceivingreminders,whereasanotherprofessionalexpressedsome concerns about whether users need to have logged in the platform to receivenotificationsandreminders.

Question 7. Do you consider the platform can improve control of the people living withdementiaandpreventotherdiseaseswithPLWDandcaregivers?

The majority of people (5 out of 6) believe that the platform could potentially help tomonitorPwD.Anotherprofessional reported that thismonitoringcouldbepossibleonly ifthereportedinformationisaccurate.

Question 8. What kind of questionnaires and data-collection tools you might like to beincludedintheplatform?(formemory,cognition,anxiety,depression,etc.)

Professionals would be interested in monitoring PwD medical adherence (N=1), levels offunctioningincludinginterests,personalhygieneandhobbies(N=2),qualityoflife(N=1),andmemoryskills(N=2).Asleep-relatedquestionnairecouldalsobeincluded,andpeoplecouldbe provided with sleep hygiene tips in their report (N=1). Professionals would be alsointerested in measuring PwD and caregivers’ mood (N=2). Other people reported thatquestionnaires might not be a good idea because they may raise PwD and caregivers’anxietyormayupset them (N=3),orbecause theyprovide scoresandnumberswhich ‘donotreallyhelp’(N=1),orbecausetheremightbealearningeffect(N=1).Ontheotherhand,another professional believes that people would be interested in completing online


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questionnairesandreceivefeedback.Fiveprofessionalssuggestedtousesimpleandgenericquestions,suchas“Ihavebeenmisplacingthingsrecently”,whichrequireasimpleYES/NOanswer(seehttp://asksara.dlf.org.uk/).Oneprofessionalsuggestedto includeaCommentsbox at the end of the questions so that users can provide qualitative data and/or moreinformation.

Question9. Is treatmentadherence important toyourpeople livingwithdementia?Howawebplatformcouldhelp?

Allprofessionals(N=6)believethattreatmentadherenceisimportantforPwD.

SeeQuestion6abouthowawebsitecouldhelptreatmentadherence.

Additionalquestions:

Question 1. What are the barriers or facilitators for people with dementia/ older peopleaccessingtheInternet?

Barriers: Three professionals reported that the majority of elderly people do not own acomputerortablet,orthat“theydonotreallyknowwhattodowithiteveniftheyhadit”.Inaddition,mostelderlypeopledonothaveaninternetaccess(N=2),andinternetforthemis‘anunknownentity’.TwoprofessionalsbelievethatthecostofhavingInternetconnectionandbuyingadevicecouldbeanissueandhavingtobuyanapplicationmayputpeopleoff.Theprocedureofgoingonlineandtheabilitytosearchforinformationmaybedauntingforolderpeople,especiallyforpeoplethathavenotusedtechnologydevicesorInternetbefore(N=2).Oneprofessionalmentionedthatwhensomeonehascognitivedecline,theystruggleto learn new information. The amount of information available onlinemay confuse olderadults, and it is difficult to know which website or internet source can answer yourquestions,orwhatsearchtermsyoushouldusetogathertheinformationyouneed(N=3).Thespeedof internetconnectionmayhaveaneffect,for instance, iftheconnectionistooslow,peoplecangetfrustratedandaremorelikelytostopaccessingonlinesources(N=2).Security concerns might be another barrier for elderly people to visit websites, such asFacebook. Internet access and download limitsmight also affect elderly people’s internetusage,especiallyiftheyreachthelimitsandcannotaccessinternet(N=1).Onemorebarrierforolderpeoplecouldberememberingpasswordsandkeepingtheminsafeplaces(N=1).

Facilitators: Two professionals underlined the importance of simplicity on websites andapplications;withasimpleandeasytoreadlayout.Anotherfacilitatoristhedevice,becausepeoplearemore likely tobeengagedwithtabletcomputerswith largerscreens (N=1).Ontheotherhand,smartphonesscreensaresmaller,whilelaptopsareheavierthantabletstocarry(N=1).Threeprofessionalsbelievethathelpingolderadultssetupanaccountinsocialmediamightbeanotherfacilitator. Inasimilarway,olderadultsmightbebenefittedfromreceivingeducationandtrainingonhowtouseICTdevicesandapplications(N=3),aswellasontheirpotentialbenefits,suchasqualityoflifeimprove(N=1).Finally,supportworkerscan


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provide devices and internet access in memory groups and cafes so that people canfamiliarisethemselveswithtechnology(N=1).

Question2.WhatareyourthoughtsonPwDandtheircaregiverssharinginformationonanonlineplatform?

Four professionals supported the view that there should be no risk as long as people areawareofwhattheirshare;however,shared informationshouldbemonitored incasetheybring people in vulnerable position when sharing personal information, such as theiraddress, or financial information, such as where they keep their money. Monitoring theplatformwouldreassurecaregiversthatPwDwouldnotbevulnerabletoothers(N=3).Oneprofessionalwas concernedaboutPwDcapacity togive consentaftera certain stage,andaboutcaregivers’rightstosharepersonalinformationonbehalfofPwD.IfthecaregiverhasLastingPowerofAttorneyforthePwD,thenthecaregivermightbecoveredlegallytosharethingsinthePwDbestinterests.Twoprofessionalssuggestedthatyoucouldhaveafunctionwhereyou‘report’inappropriateactivity.Oneprofessionalsuggestedthatpeoplewhosignup to CAREGIVERSPRO-MMD platform should sign an agreement, such as ‘terms andconditions’. Two more professionals underlined the importance of protection andvulnerability. Finally, one professionalwas concerned about how health professionals canmanage situationwhere PwD are upset from the outcome of a completed questionnaire,suchasbeingatriskofaheartattack.

Question3.Anyothercommentsorsuggestions?

One professional suggested to test the platform with people to find potential gaps orunnecessarysteps.Anotherprofessionalsuggestedtobemindfulofmedicalandlegalissues.

Questionnaireresults

Avg stDev StEr

Peoplewithdementia

P1 D001 3.167 3.779 0.658

P2 D002 2.6 2.313 0.403

P3 D003 3.933 3.14 0.547*

Caregivers

C1 C001 5.931 3.585 0.634

C2 C002 7.138 3.378 0.597

C3 C003 3.31 2.466 0.436

C4 C004 8.897 1.472 0.26

C5 C005 9.724 0.996 0.176*

Doctors


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D1 P001 5.8182 3.7497 0.7086

D2 P002 5.5 3.648 0.689

D3 P005 5.318 3.92 0.741

D4 P007 2.368 2.852 0.539

D5 P008 5.5 4.014 0.759

D6 P009 5.16 4.0278 0.7612*

*PleasenotethatPwDandcaregiverscouldnotprovidearesponse(N/Aresponse)fortheprivatecommunicationquestions(3 items)duetothe limitedfunctionalityoftheplatformandthelackofparticipants’data/healthinformationintheplatform.Forthesamereason,3out of 6 doctors/health professionals could not provide a response for privatecommunication questions (3 items), 5 out of 6 doctors/health professionals could notprovidearesponseformanagingdisordersandtreatments(3items),onepersoncouldnotreplyonmanagingevaluationsquestions(3items),andoncreatingnewcasesquestions(3items).Therefore,N/Aresponseswereexcludedfromnumericalresults.

Inaddition,onePwDdidnotmanagetocompletethetestingsessionbecausetheirattentionwasdistractedevenduringthedemonstrationvideos.

3.9 COOSReport

3.9.1 Introduction

COOSS, as a non-profit private companyprovidinghealth and care services to elderly anddisabled persons, brinks in various user groups to support the Focus Group approach inCAREGIVERSPRO-MMD.Bothface-to-faceandgroupmeetingtookplaceinvarioussites.Thefollowing sectionsprovideadescriptionof theparticipants,discuss themethodologyusedandpresenttheresults.

3.9.2 Methodology

InordertocollectfeedbacksandopinionsaroundtheCaregiversProversionandtoachievethe new development requirements for the CAREGIVERSPRO-MMD platform, COOSSselectedapanelofend-userstoinvolve,boththroughFocusGroupsandindividualface-to-faceinterviews.TheFocusGroupwerethefollowing:Site Place Date Participants ModeratorAncona COOSSoffice 31/5/2016 1psychologist

6researchersinAgeingM.Antomarini

Falconara DailyCenterVisintini

1/6/2016 1psychologist2caregivers

M.Antomarini


8/6/2016 1psychologist1doctor1headnurse

M.Antomarini


CAREGIVERSPRO-MMD


Theface-to-faceinterviewswerethefollowing:Site Place Date Participants ModeratorAncona 10/6/2016 1helper

F.Scocchera


13/6/2016 1user M.Petrone

Camerano

DailyCenterVisintini

30/6/2016 1user F.Scocchera

Ancona 12/7/2016 1helper F.CesaroniFocusgroupandface-to-faceinterviewshavefollowedthesameprocess:participantshavebeenintroducedtotheproject’sscopeandactivitiesbyamemberofCOOSSstaffinvolvedinCAREGIVERSPRO-MMD.Theplatformhasbeen initiallypresentedwithaPPTpresentation.Videoshavebeenalsoshowed,fortheirwholeduration(inFocusGroup)andasextractofmainparts(inface-to-faceinterview).Afterthat,withthesupportofatabletoraPC,participantshavebeenaskedtogothroughthe platform’s functions in order to test them; caregivers and ageing professionals havebeenaskedtodefineifandhowthesolutionproposedmayaffectthePLWDdailylife,howitmaysupportthecaregivers,andhowitcouldbeintegratedintheirdailywork.At the end of the demonstration, questionnaires have been submitted; some participantscompleted them in real time, with a support (namely in face-to-face interviews), othersparticipants filled the questionnaire in later on, sending copy by mail or paper. Theinvestigationhasbeenconductedinanonymousway,sonoprivacyrequirementshavebeenaskedtotheparticipants.

3.9.3 DescriptionofParticipants

According to the categories of end-users and considering a wider category of AgeingProfessionals,comprehensiveofdoctor,headnursesand, ingeneral,experts inageing (e.g.servicescoordinator),COOSScollectedatotalof16questionnaires.Basedonthecategoriesidentifiedintable1,end-usersinvolvedbyCOOSSare:

PLWD 2usersCaregivers 2psychologists

2caregiversHelper 2familymembersAgeingProfessional 1doctor

1headnurse6expertsresearcherinageing

3.9.4 Methodology

InordertocollectfeedbacksandopinionsaroundtheCaregiversProversionandtoachievethe new development requirements for the CAREGIVERSPRO-MMD platform, COOSSselectedapanelofend-userstoinvolve,boththroughFocusGroupsandindividualface-to-faceinterviews.


CAREGIVERSPRO-MMD


TheFocusGroupwerethefollowing:Site Place Date Participants ModeratorAncona COOSSoffice 31/5/2016 1psychologist

6researchersinAgeingM.Antomarini


1/6/2016 1psychologist2caregivers

M.Antomarini


8/6/2016 1psychologist1doctor1headnurse

M.Antomarini

Theface-to-faceinterviewswerethefollowing:Site Place Date Participants ModeratorAncona 10/6/2016 1helper

F.Scocchera


13/6/2016 1user M.Petrone

Camerano

DailyCenterVisintini

30/6/2016 1user F.Scocchera

Ancona 12/7/2016 1helper F.CesaroniFocusgroupandface-to-faceinterviewshavefollowedthesameprocess:participantshavebeenintroducedtotheproject’sscopeandactivitiesbyamemberofCOOSSstaffinvolvedinCAREGIVERSPRO-MMD.Theplatformhasbeen initiallypresentedwithaPPTpresentation.Videoshavebeenalsoshowed,fortheirwholeduration(inFocusGroup)andasextractofmainparts(inface-to-faceinterview).Afterthat,withthesupportofatabletoraPC,participantshavebeenaskedtogothroughthe platform’s functions in order to test them; caregivers and ageing professionals havebeenaskedtodefineifandhowthesolutionproposedmayaffectthePLWDdailylife,howitmaysupportthecaregivers,andhowitcouldbeintegratedintheirdailywork.At the end of the demonstration, questionnaires have been submitted; some participantscompleted them in real time, with a support (namely in face-to-face interviews), othersparticipants filled the questionnaire in later on, sending copy by mail or paper. Theinvestigationhasbeenconductedinanonymousway,sonoprivacyrequirementshavebeenaskedtotheparticipants.


According to the categories of end-users and considering a wider category of AgeingProfessionals,comprehensiveofdoctor,headnursesand,ingeneral,expertsinageing(e.g.servicescoordinator),COOSScollectedatotalof16questionnaires.Basedonthecategoriesidentifiedintable1,end-usersinvolvedbyCOOSSare:

PLWD 2usersCaregivers 2psychologists

2caregiversHelper 2familymembersAgeingProfessional 1doctor

1headnurse6expertsresearcherinageing


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3.9.6 Results

PLWD

OpenQuestionsfromPersonalInformationQuestionnaireQ1.Haveyoueverusedanapplicationorawebpageaboutmemorydisorders?Whatwasyourexperience?None of the respondents have ever used an application or a webpage about memorydisorders.So,nocaseshavebeenexperienced.Q2.Whatmeansdoyouuseformanagingofyourpersonalmedicaldataandtreatmentplan?Respondents referred exclusively to paper version documents concerning personalmedicaldata, information, diagnosis, examinations, up to treatment plan. In rare case, e-mailmessages are used to communicatewith theGeneral Practitioner, but alwaysmanaged bychildren.Q3. How the internet and ICT technologies might support you or meet your needs ontreatmentmanagement?Respondentsagreed in lookingat ICTwith the scopeofgettingeasier the relationshipwiththe General Practitioner, as an opportunity to avoid visits or mobility (e.g. to obtainprescriptions).OneoftherespondentsalsoreferredtoICTintermsofremindsandalarmsformedicalappointments.Q4.Whateffectswouldyouexpectfromagamifiedhealthcareapplicationorwebpageonitsusers?(e.g.reduceboredom,maximizeengagementtime,treatmentadherence,etc.)Oneoftherespondents(withlimitationsinmobility)wouldexpecttheopportunitytogetanoccupationduringthedayandspendthetimeofthedaypassedathome(“…somethingtodoat home, to help me pass the time, especially during the long week-end…”). One of therespondents would expect the opportunity to be in contact with friends and healthprofessionals, as well as to receive immediate rescue in case of need (“…I’m fine but I’mworriednottobeabletocallforhelpifIfeelsick…”).Q5.Whatkindofgameswouldyouliketoplayinahealthcareapplication?Forwhatreason?(forskillstraining,leisure,socialization,etc.).Respondentsagreedingameslikecrossword,rebusandsudoku,alsoconsideringsomekindofsocialisationforum(fortheyoungerinterviewed).OpenQuestionsfromPlatformQuestionnaireQ1.Howcouldweimprovethedesign?(Colours,fonts,layouts,etc).Respondentshavevisualimpairment,sotheyaskedforbiggerfonts,clearer(blackinsteadofwhite)andeasytoreadtexts.Also,astheyarenotfamiliarwithICT(theydonothavePC)anddevices(e.g.mouse),theyhavedifficultiesinscrollingdownthepages(oneoftherespondentsufferofarthritis),sotoolongscreenwerenoteasytobrowseforthem.Q2.Pleaseindicatewhichtasks/stepsweremoredifficulttocomplete.Froma‘technical’pointofview,theywereconfusedbythetoomanycoloursandbythelonglistof items to select (get immediatelyboring to read the long listof symptoms).Fromthe‘content’pointofview,theyneededtobeassistedduringthewholedemonstration.


CAREGIVERSPRO-MMD


Q3.Whatwereyourexpectationsregardingtheplatform?Oneoftherespondentswouldexpectedtoseephotosandpicturesoffamilymembers(e.g.children, nephews) and also asked for the opportunity to call them through the platform(namely,oneoftheuserspreviouslyexperiencedsuchanoptioninapilot).Q4.Whatfeatureswouldyouliketoaddinorremovefromthisplatform?Oneoftherespondentsaskedtoaddphotosandpicturesoffamilymembers.Butingeneralthey were not able to provide further comments as they started get anxious with thedemonstrationofmore complex tasks (e.g. café), especially because theywerenot able tointeractwiththeplatformautonomously.Q5.Whatkindof self-reportedquestionnairesanddata-collection toolsyoumight like tobeincludedintheplatform?(formemory,cognition,anxiety,depression,etc.).Q6.Howdoyouunderstandwhatisasocialnetworkanditsbenefits?Q7. Could you describe in your own words what is an health online community and itsbenefits?Respondentswerenotabletoprovideanswerstothose3questions.Q8.Howsharingyourexperienceswithothersandaskforsupportmakesyoufeel?Respondentsagreedinpositiveeffectsofsharingexperienceswithother,namelyconcerningtheirhealthandconditions.Oneoftherespondentreferredtotheopportunitytoavoidandfightlonelinesswhentalkingwithothers;oneoftherespondentsreferredtotheimportanceofthenetwork(friends,neighbours,familymembers)tohelpeachotherincaseofneed.Q9.Doyouunderstandthattheresultoftheonlinequestionnaireswillservetoalertdoctorsormembersofmycircleincaseofemergency?Howthatfeaturemakesyoufeel?RespondentshaveingeneralgreattrusttowardstheGeneralPractitionersotheyagreed,andagree inprinciple,ofanysolutionor informationgiven to theGeneralPractitionerwith theaim to improve their health conditions. Even more, for one of the respondents, theopportunitytoprovidetheGeneralPractitionerwithautomaticinformationgeneratedbytheplatform,ishighlyappreciatedasenhancesthefeelingofsecurityandmonitoring.Q10.Istreatmentadherenceimportanttoyou?Howawebplatformcouldhelp?Respondentswerenotabletoprovideanswerstothisquestion.

Caregivers

OpenQuestionsfromPersonalInformationQuestionnaireQ1.Haveyoueverusedanapplicationorawebpageaboutmemorydisorders?Whatwasyourexperience?Respondents referred to scientific web pages (Centro Alzheimer.org; Fatebenefratelli -Brescia - Alzheimer; LiberaUniversità di Anghiari - LaMemoria, etc.) as amean to obtaininformation about latest researchers, about innovative methods to approach the PLWD,about strategy to work to maintain the memory, about the psychological aspects ofdementia.Q2.Whatmeansdoyouuseformanagingofyourpeoplelivingwithdementiamedicaldataandtreatmentplan?


CAREGIVERSPRO-MMD


Respondents referredmainly to face-to-face interviewwith thePLWD,with submissionofevaluation tests; in some case, the interview is also managed by phone. As concerningdocumentation,themanagementofinformationoccursmainlybypaperversion;oneoftherespondentdeclaredtobeundertrainingforanewapproachofmanagementandsharingofdatathoughon-lineformat.Q3. How the internet and ICT technologies might support you or meet your needs ontreatmentmanagement?Respondents (all formal caregivers) appreciated the approach of the platform, namely interms of an opportunity: to share opinions, to launch doubts and questions, to look forpsycho-educationalmaterials, to find trainingopportunity, to search for thematic in-depthanalysis,toparticipatetoexperiencedforum.Q4.Whateffectswouldyouexpectfromagamifiedhealthcareapplicationorwebpageonitsusers?(e.g.reduceboredom,maximizeengagementtime,treatmentadherence,etc.)Respondents referred to socialisation as first and primary effect for the PLWD. They alsoagreeduponthepositiveeffectsgeneratedbythesharingof information, themutualhelpamongst caregivers, the answers provided by different specialists and stakeholders, thepsycho-social-behavioural support, the scientific and educational resources. One of therespondentis,anyway,scepticinprovidingfamilymemberswithfullaccesstoevaluations,diagnosisandtherapiesofthePLWD,notonlybecausetheunnecessaryfullunderstandingbutmainlyforasenseofrespectandprotectionofthePLWD’sprivacy.Q5. What other computerized means do you use for risk detection and conditionsprevention?None.Onerespondentmentionedthebi-monthlytele-monitoringofCVDPLWD.Q6.Whatkindofgameswouldyouliketoplayinahealthcareapplication?Forwhatreason?(forskillstraining,leisure,socialization,etc.).Respondentsagreedinthepersonalisationofeveryintervention,tobetailoredaccordingtothePLWD, in ICTenvironmentornot. OnerespondentpointedoutthedifficultyforsomePLWDinaccessingtheplatform,asageneralprinciple,andforesawthepossibilityonlyforminorNCdisorders.One respondent pointed out the requirements in terms of visual, cognitive and auditiveincentives, suggestingexercisesable tostimulate theemotions, thecolourperception, theword-matching,theauditiverecognition.Asconcerningwriting, thisneedtobestimulatedbyhand-writing,asthekeyboardrisktogetlostimportantresidualabilities.Q7. What means do you use for managing the treatment of your people living withdementia?Paperdocumentsandarchives.OpenQuestionsfromPlatformQuestionnaireQ1.Howcouldweimprovethedesign?(Colours,fonts,layouts,etc.).Respondentssuggested:

• Biggerfonts• Imageswithcaptions• Sereneimages• Representativeimages(pubsorpicturesof’50,evenofPLWDhistory)


CAREGIVERSPRO-MMD


• Lessvisualfeaturestoavoidconfusion(toomuchboxesasgraphiclayout)• Lessdarkcolours(theblackscreenisunpleasant)• Thevisualimpactisnotclear(toorganisebettercontents/spaces)

Q2.Pleaseindicatewhichtasks/stepsweremoredifficulttocomplete.Respondentshadnoprobleminbrowsingandcompletingtasks,buttheywerescepticaboutthe capacity to do it by the PLWD/user. One respondent claimed that the research ofcontents is time consuming and a more ‘elementary’ structure would help to immediateaccessandfindwithislookedfor.Q3.Whatwereyourexpectationsregardingtheplatform?Respondentsagreedinfindingtheplatformausefultoolforthecaregiver,ableto:

• inform• helptomanagethestress• promotethecommunication• providepracticalandoperationalinformation(theprimaryscope)abouthowtodeal

PLWD(e.g.howtocopewithaggressivebehaviours)• enhance the acquisition of social and relational skills needed by the helping

relationship• offerinformationaboutservicesandstructuresoftheterritory• provideapsychological,socialandbehaviouralsupport

Q4.Whatfeatureswouldyouliketoaddinorremovefromthisplatform?Respondentsprovideddifferentsuggestions:

- tooffer theplatformonly tocaregiver,withaviewtoprovide themwithpracticalanswerstotheirdoubtsanddifficultiesinmanagingthePLWD

- topreventtheaccesstodiscussionsamongstcaregiversand/ordoctorstothePLWD- toallowabetterandmoredirectconnectionamongstcaregiverandrelatedPLWD

(nowitseemstobedisconnectedandoutofthedyadapproach)- to enhance the comprehension of the real needs of the caregiver, considering as

primarygoaltheprovisionofpracticaltoolsandhintsusefultodealwiththePLWD.

Q5.Whatkindofquestionnairesanddata-collectiontoolsyoumightliketobeincludedintheplatform?(formemory,cognition,anxiety,depression,etc.).Respondentsagreedwiththequestionnairesmonitoringtheanxietyanddepressionofthecaregiver.TheyalsosuggestedtheinclusionofquestionnairesandexercisesfortheresidualabilitiesofthePLWD.Q6.Howdoyouunderstandwhatisasocialnetworkanditsbenefits?Q7. Could you describe in your own words what is an health online community and itsbenefits?Respondentsdidnotputlotofattentiontothosequestions;onerespondentdescribedtheSocialNetwork as a tool for socialisation and information that reveals to beuseful ifwellorganisedandmanaged,andtheHealthOnlineCommunityasagroupofindividualssharingthe unique need of information and contents as concerning a specific need (health),togetherwiththeneedofsocialisationandpsychologicalsupport.Q8.Howsharingyourexperienceswithothersandaskforsupportmakesyoufeel?


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Respondentsagreed in the importanceofsharingtheexperiences, thedoubts, theburdenand the information. A key aspect was, actually, the opportunity to collect all tests,evaluations and information to allow a shared and more complete assessment andmonitoringof thePLWD,byall thestakeholdercomposingthe“equipe”.This isusefulnotonly to reduce the burden but mainly to ensure a more effective assistance andintervention.Q9.Doyouunderstandthattheresultoftheonlinequestionnaireswillservetoalertdoctorsormembersofmycircleincaseofemergency?Howthatfeaturemakesyoufeel?Respondentshadnospecificopiniononthat.Onerespondentreferredtotheimportanceofsuchafunctiontosupporthealthspecialist inthedefinitionofdegenerativediagnosis;butanyreferencetoapreventionpurposeoreffectmustbeavoided.Q10.Istreatmentadherenceimportanttoyou?Howawebplatformcouldhelp?RespondentsprovideddifferentopinionsaboutTA,whichseemstobeaverydelicatetopic:

- the platform should avoid to deal TA with PLWD in order to avoid confusion in

therapies;- theplatformshouldallowthetherapeuticrevisionbythedoctorinordertoprovide

thecaregiverwithanalwaysupdatedgeneralframeoftherapy;- thesectionrelatedtoTAhastobethoughtforthecaregivermainly,avoidinganxiety

andfeelingoffailureforthePLWD;- theTAshouldbedealtconsideringtheeffectsaboutinformationandtrainingofthe

caregiverasregardtheimportanceofthetherapy.FurthercommentsissuedduringdemonstrationDuringtheFocusGroupwithcaregivers,furtherfreeandopencommentswerecollected.

“Ingeneral, theproposedsolutions, focusingmoreonthesupportof thecaregivers thantothe PLWD, has the potential to be a significant contribution to support the care activityprovided informally at home, in close integration with the human-based traditional careintervention.Thisfortworeasons:atfirst,theplatform,asitisnow,canbemanagedmainlyby personswithout cognitive problems, as it asks for abilities that a PLWD lose very soon.Secondly, it ishardto imagineaPLWDabletogothroughtheplatform’s functions, lookingfor social interactions and managing its daily life on it. Particularly, the treatmentmanagementtoolseemstobealittlebit“risky”,becausethecognitivedegenerationdoesnotallowthePLWDtoproperlydefinehis/herlevelofadherence”.“Concerning the doctor’s set of functions, it seems to be a useful toolbox, but it has to betunedtohim/herdailyworkingactivity.Firstofall,thecategoryofexpertaddressedhastobeclearly stated:who’smeant to use it? A GP? A Psychologist? As it is, it seems to bemoresuitable for a specialisedmedical expert than for a GP: first of all, for a simple reason ofnumbers(GP’shastoomanyPLWDanditisnotreasonabletoimaginehimorhermonitoringin remote hundreds of PLWD so in deep), secondly for a practical reason, which is thepossibilitygivenbytheplatformtoreducetheface-to-facevisitswithoutreducingthePLWDmonitoring. The possibility as well tomonitoring in real time the caregiver status is a keypoint of strength of the platform because is a key component of an expert’s interventionsnormally.”


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“The platform seems a powerful tool to allow caregivers to find solutions, tips andsuggestionsforveryconcretecircumstancesthatmayhappenduringthecareactivity;PLWDcan have unexpected reactions and caregivers may not be able to identify the properbehaviour to manage it. From this point of view, the possibility to interact with othercaregivers seems to be themost effective function, with potentially the faster and deeperimpactinthedyad’sroutine”“Adeeperattentionshallbegiventotheusers’sideoftheplatform:aPLWDonly inaveryearlystageofdisease isableto interactwithtools likethis;withthetime, thesupportofaperson in interactingwiththeplatform ismandatory; tosupport theusers inmanagingthetoolandtoavoidanyriskofwrong,unexpectedorevendangeroususeofit.”“Twoscenarioscouldbeimaginedafterthetestoftheplatform:inthefirstscenario,theuseoftheplatformisestablishedbyandagreementamongthedoctorandthefamily:theexpert(specialist?)invitesthefamilytousetheplatforminordertofacilitatetheinteractionandtoprovidereal-timesupporttothedyad;suchanagreementseemstobemandatorytoconvincethefamilytoadopttheplatformindailylife,becauseotherwiseapartialornotproperuseofitdoesnotprovideanyvaluableinformationforthedoctor.In the second scenario a PLWD with reduced abilities is imagined, and his/her use of theplatformprogressivelydecreases;thisscenariomayhappenquitesoonthereforeitwouldbebettertoimaginethecaregiversworkingontheplatforminsteadoftheusers;inthissenseasuggestionmaybethepossibilityforthecaregiverstointroduceandprofilethecaredpersoninsteadoflettheusersprofilingbythemselvesandmanagetheirprofiledirectly.”“Acaregiverhasfewtimetointeractwiththetoolduringthecareactivity,sothesuggestiongoesinthedirectiontoempowerthemobileapplicationmorethantheplatformfortheusevia PC. In fact, a professional caregivermay need to find a solution for a critical situationduringthecareintervention,sothepossibilitytoquicklycheckthemobilephonemaybemoreuseful. The remote monitoring may be applied in a structured context, as a daily centre:familiescould interactwith thecentre fromhome, facilitating theawarenessof theexpertsaboutthedyadsituationsotoidentifymoresuitableandpersonalizedservices.”Helpers

OpenQuestionsfromPersonalInformationQuestionnaireQ1.Haveyoueverusedanapplicationorawebpageaboutmemorydisorders?Whatwasyourexperience?None of the respondents have ever used an application or a webpage about memorydisorders.So,nocaseshavebeenexperienced.Q2.Whatmeansdoyouuseformanagingofyourpeople livingwithdementiamedicaldataandtreatmentplan?Respondentsreferredexclusivelytopaperversiondocuments,aswellasphonecallsande-mailstotheGeneralPractitioner.Q3. How the internet and ICT technologies might support you or meet your needs ontreatmentmanagement?Oneoftherespondentsdeclaredtobenotenoughdigitalliteratetobeabletoanswer.


CAREGIVERSPRO-MMD


One of the respondents mentioned the possibility of getting easier and quickercommunication, of facilitating information sharing on what is needed among all peoplearound(“…tomakeitpossiblethatallpeopleinvolvedinthecareprocessareinformed:meas familymember, the informalcaregiver, theformalcaregiverstaffat thedailycentre, themedicaldoctor,etc.”)Q4.Whateffectswouldyouexpectfromagamifiedhealthcareapplicationorwebpageonitsusers?(e.g.reduceboredom,maximizeengagementtime,treatmentadherence,etc.)One of the respondents would expect an improvement in socialisation, a reduction of theisolationandanopportunityofcooperationwithpeers.Oneoftherespondentwouldexpectanopportunitytospendsometime.Q5.Whatothercomputerizedmeansdoyouuseforriskdetectionandconditionsprevention?Noneforallrespondents.Q6.Whatkindofgameswouldyouliketoplayinahealthcareapplication?Forwhatreason?(forskillstraining,leisure,socialization,etc.).Respondentsdeclarednottoknowgamesinhealthcareapplication,neithertheirwork.Q7.HowwouldyouliketofollowprogressmadebyyourpeoplelivingwithdementiaandgetinformedfortheactivityofusersrelatedtoyourPLWD?Oneoftherespondentwouldliketoreceiveinformationinrealtime,notintermsofalarmsor alerts butwithin a framework of sharing communication and understanding, so that allpeople involved in care are informed and everything is planned (“…I do not expectimprovements,butwhatIneedistobeensuredthatnofurthercriticaleventsmightoccur:Ineedtospendmytimeworkingandbeingsurethatmymotherisokandthewholesystemofcare(informalandformalcaregivers)isworkingproperly…”).Oneoftherespondentprecisedthe poor experience with ICT, and expressed the preference for very simplereminders/popups opening by themselves and warning about progresses (“… with thepractice,Imightlearn(andappreciate)moreadvancedmodalities...”).Q8.Whatmeansdoyouuseformanagingthetreatmentofyourpeoplelivingwithdementia?Oneoftherespondentsdeclaredtousenomeansorspecific tool,admittingtheworryandtheproblem(“…this isthemainproblemtofacerightnowas I'mnotmoresureabouttheadherenceofthetreatmentofmymother…”).OneoftherespondentsdeclaredtotaketheresponsibilityforthetreatmentOpenQuestionsfromPlatformQuestionnaireQ1.Howcouldweimprovethedesign?(Colours,fonts,layouts,etc.).One of the respondents expressed the preference for less colours, given themisunderstanding about coloured circle/points and asking for clearer explanation of therelationshipamongstcoloursandroles.Also,thefullnameispreferred,insteadoftheinitial.Q2.Pleaseindicatewhichtasks/stepsweremoredifficulttocomplete.One of the respondents admitted the initial confusion about circle, cafe and friends,especiallyforthosewhoareregisteredinall(“…arefriendsalsocaregivers?”).Also,ICcodeinthe list of treatment/medicines created confusion.One of the respondents admitted to beconfusedbythewholeplatform,beingnotexperiencedindealingwithICTtools.


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Q3.Whatwereyourexpectationsregardingtheplatform?Oneoftherespondentwouldexpecttogainpracticalinformationandhints,alsointermsofself-assessmentofthehelpercontribution(“…amIdoingrightwithmymother?”),aswellasto create a better relationshipwith theGeneral Practitioner (“…I cannot find himeasily byphoneanditisnoteasytoexplainbyphonewhatishappening,heisalwaysinhurry…”).Forthat reason, theopportunity to let theGeneral Practitioner the information and thewholepictureinrealtimedirectlyfromtheplatformisappreciated.Oneoftherespondentswouldexpect something handy and easy to use, to get information andmonitor progresses, alsoaskingforpropertechnicalpreparationinordertobeabletobenefitfromthisQ4.Whatfeatureswouldyouliketoaddinorremovefromthisplatform?Oneoftherespondentsaskedforphotooftheparticipantsinsteadoftheinitialletterofthename;also,proposed to includeother issuesamongst the tagsand interestingaspects,notstrictlyrelatedtodementiaandcaregiving(“…notonlythoserelatedwiththediseaseorwiththe caregiving, but more in general, such events, wellbeing, travelling, in order to invitepeopletoshareopinionsanddiscussionaboutotheritemsandhavearelief...”).Q5.Whatkindofquestionnairesanddata-collectiontoolsyoumightliketobeincludedintheplatform?(formemory,cognition,anxiety,depression,etc.).Respondents suggested information about services available in the territory (daily centres,reliefservices,mutualhelpgroups,etc.)andcognitivedecreasemonitoring.Q6 .Is treatment adherence important to your people living with dementia? How a webplatformcouldhelp?Respondentsagreedabout the importanceofTAandaboutapossible supportprovidedbytheplatformtoremindtheassumption:alertsabouttreatmentschedule,countingpillstakeninaweek(count-down),trickstoremembertheassumptiondeadline.

AgingProfessionals

OpenQuestionsfromPersonalInformationQuestionnaireQ1.Whatmeansdoyouuseformanagingofyourpeoplelivingwithdementiamedicaldataandtreatmentsuggestions?Some of the respondents referred to informative and descriptive platforms, whereinformation about chronic diseases are stored and managed by main actors, in terms ofmedicaldataandtreatments:databases,medicalrecords,platforms;thosearetheresultsof pilots or work in progress. Some of the respondents referred of Users Platform, withpersonalizedhealthplans,trainingtailoredonuserscharacteristicandpathology.Oneoftherespondentsreferredtotraditionalmeanssuchaspaper,foldersandarchives.Q2.Whatothercomputerizedmeansdoyouuseforriskdetection,diagnosisandprevention?Some of the respondents mentioned applications such as telemonitoring for fallspreventionsandcardiacperiodiccheck,andmoreingeneral,telemonitoringdevices.Q3.Whatmeansdoyouuseforscientificcontributionandaccessingscientificmaterial?Internet is the main source of information and contribution for all of the respondents,togetherwithseminars,forums,workshops,scientificpapersandpubmed.


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Q4.Do you recommendanapplicationorawebsiteaboutmemorydisorders?Whichonesandwhy?Somerespondentssuggestedthefollowingsites:· National and European networks (scientific sources, caregivers’ community,

professionalsforum)astheyprovidethemostliableinformation· Websites(www.centroalzheimer.org;www.neuropsicologia.it) forthecompletenessof

theinformationandtheopportunitytobere-directedtoliablesources· Previousprojectsandexperiences (e.g.Nacodealproject:applicationdevelopedwithin

anAALprojectandaimingatsustainingthedailylifeofpeoplesufferingofdementia)Q5.WhatkindofresourcesorservicesdoyouthinkpeoplewithMNDorcaregiversmayfindusefulorbeneficialwhenusingonlinewebsites?Respondents agreed about the benefit of knowledge sharing in general, specificallymentioning:· Exchangeofexperiencesandcase-studieswithpeers· Practicaladvices,problemsolvingandgoodpractices· Opportunity of socialisation and sharing of personal information and experiences (not

necessarilyprofessionalinformation,aspeoplenotwelltrainedcouldnotbeabletousescientificsourcesintheproperway)

· OnlineHealthRecord· Forum,chatanddiscussionspaces,nonformalandinformallearningopportunitiesQ6.Whatdesignguidelinesor ideaswouldyourecommendto interfacedesigners tomaketheplatformPLWD-friendlyandtoenhanceusability?Any'musthaves'and/or'mustnots'?One of the respondentsmentioned all items and functional requirements about usabilityand accessibility that need to be taken into consideration, with a special attention topersonalisationofservices,duetothefactthatPLWDandtheircaregiversarenotusedto'browse'andneedpreciseandexactindicationaboutwhattodoandhowtodo.Oneoftherespondents suggested the implementation of games and exercises submitted by expertsalso during face-to-face visit and monitoring. One of the respondents referred to forum,spaces to share experiences (e.g. informal learning) and all activities related withsocialisation.Q7.Inwhatwaycouldanonlinewebsitehelpprofessionalstoimprovethecaretheyprovideto peoplewith dementia and their carers? (information, socialization, support and advice,assessmentofoutcomes,followtherapy,etc.)Respondentsprovideddifferentsuggestions:· Social networking services and behavioural screening able to improve the therapeutic

activities· Informationandtrainingforformalcarers,supportandrelieftofamiliars· Tailored and personalised services, in order to address to the most effective care

process· Homecareandremotemonitoring· Information, exchange of good practices, opinions and advices, assessment and

monitoringOpenQuestionsfromPlatformQuestionnaireQ1.Enumerateparametersand information that youwould like to seewhenyou realizeamedicalcontrolwithyourpeoplelivingwithdementiaevery6month


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One of the respondents suggested the 'socialisation' parameters, as a quantification ofPLWDandcaregivers’accessestotheplatform.Oneoftherespondentspointedoutthedifficultyinstandardizationofmedicalcontrols,duetotheseveralstagesofdementiaandseverity.Q2. Please say how we could improve the design (if different for each please, indicateseparately).Respondentsprovideddifferentsuggestions:· Greater attention to the intuitivity of the platform, as not all are familiar with social

network· Amorefriendlydesignand layout,avoidingtoomuchconfusingcoloursand iconsand

with more explanations about rules in using colours (e.g. Yellow for user, green forcaregivers,blueforthedoctor,roseforneighboursandfriends,etc.)

· Adoptionof the 'traffic light logic' (green is ok, yellowattention, red is no), especiallywithsmileicons.

· Presentation of a landing page, after sign in, providing the general framework of allinformation,functionsandservices

· Biggericons,abletosubstitutelongtexts

Q3.Pleaseindicatewhichtasks/stepsweremoredifficulttocomplete.One of the respondentsmentioned the evaluation as the less intuitive, because colouredsmilesareconfusing insteadofhelping.Oneoftherespondentmentionedaddingcontactsandtreatments,aswellastheassessmentofPLWDconditions.Oneoftherespondentsadmittedtohaveexperienceddifficultiesindealingwiththewholeplatform, adding that from the point of view of a General Practitioner, it would imply tototallychangethesystemofrecordingandstoringinformationandforeseeinganinteractionwiththeplatformonlyforyoungeranddigitalliteracycaregivers.Q4.Whatwereyourexpectationsregardingtheplatform?Respondentsmentioned:· to offer different services (social, educational, clinical) targeted to the main users

(peoplewithdementia/caregivers/healthcareprofessionals)· to providehelp in theorganisationof circle and inmanagement of friends, giving the

functiontofilterthoselivingintheneighbour, inordertohaveoccasiontomeetthem(notonlythroughtheplatform)

· topaymoreattention to theuserprofileandcharacteristics, in termsofusabilityandaccessibility

· tofindoutmoregamesandmoreopportunitiesofentertainment· to have a more intuitive design, not so closely related with the layout logic of most

commonsocialnetwork.

Q5.Whatfeatureswouldyouliketoaddinorremovefromthisplatform?Respondentssuggested:· userorientedgamedevelopmentrelatedtodementiapreventionandintervention· charminglayout,easierandintuitive· an initial 'orientationbox' appearingonce signed in,providing information in termsof

spaceandtime(e.g.whoareyou,whereyouare,whichdateistoday,etc.)· theopportunityto'see'thepasswordisundertyping,whenloggingin· easiermanagementofactivities


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Q6. Do you consider the platform can improve treatment adherence focus on symptomsrelatedtothedisease?How?Someoftherespondentsansweredyes,thanksto:· closerinteractionbetweenPLWDandcliniciansandsocialworkers· daily listoftheprescriptions,assummaryofthewholemedicaltreatmentfortheday,

includingalertinthemaintimeframe(breakfast,lunchanddinnertime).· visualandaudio-visualreminders,withimmediateandin-real-timefeedback· graphicremindsandiconsOneoftherespondentsansweredno,withoutprovidinganyadditionalexplanation.Q7.DoyouconsidertheplatformcanimprovecontrolofthepeoplelivingwithdementiaandpreventotherdiseaseswithPLWDandcaregivers?Most of the respondents answered yes, with condition that it is devoted to mild andmoderate stage of dementia (otherwise other services have to be included) and that the‘triangle’user-caregiver-medicalisenhancedandfacilitated.Oneoftherespondentsansweredno,withoutprovidinganyadditionalexplanation.Q8.Whatkindofquestionnairesanddata-collectiontoolsyoumightliketobeincludedintheplatform?(formemory,cognition,anxiety,depression,etc.).Someofrespondentssuggested:· collection and processing of personal behavioural data, through gamification and

exploitationofsocialnetworks'services· memory games, cognitive exercise, information about possible services to activate in

caseofneed;· articles, appointments, and events for the caregivers (is there any restriction in

publishingalinkorthetextofanarticles?)· shortandeasy-to-fill-inscales,toassessanxiety,depressionorconfusion;· evaluationofresultsfromgames/exercises/activitiesofusersandconstantcomparison· assessment test in line with the monitoring and evaluation system implemented by

NationalHealthSystem

Q9. Is treatment adherence important to your people living with dementia? How a webplatformcouldhelp?Someof therespondentsmentionedthecontributionof theplatform ingettingeasier thecontact and the monitoring by the doctor; treatment adherence to be assessed andpharmacologicaldetailsofprescriptionarecrucialforthedoctor,butneedforaneasierandfeasible solution to be managed by the PLWD themselves. Some of the respondentsmentionedreminders,withspecialattentiontothesupportgiventothecaregiversintermsofadvicesandhintsabouthowtoencourageandmotivate thePLWDtostick the therapyassigned.FurthercommentsissuedduringdemonstrationDuringtheFocusGroupwithcaregivers,furthersfreeandopencommentswascollected.

“It isnecessarytoverifythepossibilityto integratetheplatformwithtoolsandapplicationsalreadyinusebydoctorsandexperts,otherwiseitwillimplyanadditionaleffortinsteadofa


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simplificationofthedailywork.TheinvolvementofGeneralPractitionersisnoteasy,maybespecialists, like psychiatric, are more interested to be involved. But pay attention not tointerferewithmedicaldoctoractivity(e.g.amongstdoctorsorspecialists).”“It is essential the agreement amongst family and Medical Doctor as it is not feasible toimaginefamilymembersthatspontaneouslyandfreelyaccessandinteractwiththeplatformwithoutanopinionoraninvolvementofaclinicalprofessionalinvitingthemtodoit.”“In a Residential Facility, the platform could be adopted as educational tool if it is able toconcretelyfacilitatethecommunicationwithfamily,whilst it isdifficultto imagineinhealthintervention (namelywithmajor cognitive disorders) amore intensive and complete use oftheplatform.”“Incaseof severity stageofdementia, theconditionsof thePLWDdonotallowto interactwith theplatform, so theactivepresenceof the caregiver is crucial, as theoneengaged inproviding and uploading information in the platform, in communication with the medicalside.”“Itappearstobeanappropriatetoolwheninformingaboutvariationinthecaregiverstatus,in terms of stress and burn-out, but considering that the subjective dimension is dominantanditcanreducetheobjectivityoftheassessmenttool.”“Incaseofemergencyorurgency,theiconsrelatedtoALARMSareadelicateissue,astherearelegalandethicalimplicationsthatmustbecleared,describedandagreedupon.Also,theTA is a difficult issue, as in case of severity stage, the PLWD is not able to manage thetreatmentadherenceandthecaregiverhastointervene.”“The platform seems to have a great potential but is not enough developed; too muchfunctionsandactivitiesaremissinginordertoprovideaclear identificationofthepotentialimpact.”

3.10 OverallInterviewResultsandAdditionalRequirements

PeopleLivingWithDementia-DemographicsPartA:AboutyouFrom the total 16PLWDwhoparticipated in the first interview cycle in June-July, 2016, 9maleswereand7females.Theiraverageagewas78.68yearsold(SD=5.34),whiletheyhadfirst diagnosis 4.46 years (SD = 2.50) before the timeof the interview. PeoplewithMajorNeurocognitiveDisorderswerenotrecruited,soparticipantsweresplitamongtheothertwocategories,9peoplewithMND,6withmildtomoderateconditionsandonecasereportednoNeurocognitiveConditions.

9people reported theywerewholly retired fromworkandanother7 reported theywereundersocialpension(impliednotfullyretired).ThemaintypeofEmploymentStatus(ifnotretired) was not filled by most participants, but 2 implied employee status and 1 self-employedandcontractor.


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Figure7.Spokenlanguagesstronglydependsonthesite’scountry

A lot of people in theparticipants group (N=9) lived aloneat the timeof the interview, 6people livewithanotherpersonand7 livewithmorethantwopeople in theirhousehold.Onethirdofthemliveattheirhomes independently,butthetwothirds liveathomewithhealthcareprovidedbyfamilymember(N=9)oraprofessionalcarer(N=1).

Figure8.Frequenciesofvisual,acoustic,ormotorImpairments

Animportantpartofthedemographicsquestionnaireisrelatedtoimpairmentsotherthancognitive.Figure8presents the frequenciesof thevisual,acousticandmotor impairmentsreported during the interviews. According to participant’s responses, the most commonimpairment was low vision (50%), followed by hearing loss (15%). One third implied nospecificimpairmentandonecasereportedSpeechorLanguageDisorders.

PartB:UseofTechnology/Communicationmeans

The70%ofparticipantsstatedthattheydonotusetheInternet.Fromonlythetwopeoplewhomakeuseof the Internet,onestatedcommunication (email,videochat,etc.)but theotheronestatedawidelistofactivitieslikecommunication,OnlineShopping/Selling,NewsReading,SocialNetworks,SocialNetworksandLookingformedicaladvice.Itisinterestingtonotethatfromthosetwopeople,oneusesapersonalcomputerandtheotheroneusesallkindofdevices(PC,Tablet/iPad,LaptopandSmartphone).Thus,wecanassume–fornow-thatpeoplewhousetheInternetmaynotfacedifficultiesinusinganykindofend-device.

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French

Spanish

Italian

50%

15%

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30%

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Hearingloss(notcorrected)

UpperLimbsDisorder

SpeechorLanguageDisorders

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Inthequestion'Whatothermeansofcommunicationdoyouuseforsocializationwithotherpeople living with dementia?' the answers were divided equally between 'Club (reading,games, craft, sport…)' and 'Memory workshop (in a institution) or day hospital'. Similaranswersweregiveninthequestionaboutmeansofcommunicationwithdoctorsandyourcaregivers. The 50% (N=13) responded that they have face to face meetings at home ordoctor's office. Theother half (N=14) said they communicate through telephone andonlyonereportedmailconversation.

Peopleusedifferentfortreatmentmanagement.The22%(N=4)hasnopreparationandthe30%donotpreparethetreatmentthemselvesbutthecaregivers.

PartC:GamificationandGames

Aninterestingpartoftheinterviewisdedicatedtoattitudesagainstgamesandgamification.The68%ofparticipantsdonotplaygamesand18%saidtheyplayonceaweekand12%saidthey play every day. From those who play games, two had positive experiences, onereportednegativeexperiencesandtheothertworeportedinbarriersusinggames.

Figure9.Responsesto‘Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldmotivatemetoparticipate’

Figure9presentshowparticipantsrespondedtothestatement:‘Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldmotivatemetoparticipate’.The18%ofparticipantswere negative (Strongly disagree or disagree), the 37%were neutral, but the43%believethatgame-likeexperiencescouldmotivatethemtoparticipate.AlthoughPLWDwerenotnegativetohavinggamifiedexperiencesfromtheplatform,themajorityofthemdonotexpecttobebenefitedmorefromthegamificationcomponent(68%).

PartD-Semi-StructuredInterview

Most people reported no previous experience in using an application to learn aboutcognitive diseases and others reported no previous internet experience. Personalmedicaldata aremanaged with an agenda or with professionals (ie: pharmacist) and those data,including clinical appointments are stored on local computers. In some other cases,respondentsreferredexclusivelytopaperversiondocuments.

012345678

1- Stronglydisagree

2- Disagree 3- Neutral 4- Agree 5- Stronglyagree


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Some PLWD participants did not know, or were not sure how the internet and ICTtechnologiesmight support themon treatmentmanagement.Butothersagreed thatwithICT itcouldbeeasier therelationshipwiththemedicalprofessionals,asanopportunity toavoidvisitsormobilityandalsoitwouldbehelpfultohaveremindsandalarmsformedicalappointmentsorreceiveanimmediaterescueincaseofneed.

About games, they said theywould like having games and could play games (stimulationgames, crosswords, sudoku….). An interesting opinion that gameswould be interesting totrainbrainaslongasusersarefamiliarwiththegamewasreported.Respondentsagreedingameslikecrossword,rebusandsudoku,alsoconsideringsomekindofsocialisationforum.Butanimportantpartofparticipantsreportednoparticularinterestingames.

Finally, someparticipantshad forgottenhowtouse theplatformandcouldnotanswer toopenquestions,theyfeeltiredortheythoughtthatthosequestionsweretoointrusive

PeopleLivingWithDementia–Platform

ClosedQuestions

In most usability-related questions participants living with Dementia reported no majorproblems in performing the required tasks based on the predefined scenarios, but theinterface did not always appear as being intuitive.Moreover, values in statements of thetype: ‘I prefer a different design for…’ over 5 simplymeans that new platform designersshouldprovideadeferentinterfacetofulfiltheneedsofPLWD.Ahighlightinthisoneisthe7.07 in average given at the statement ‘I prefer a different design for searching andconnectingwithotherusers’andthe6.72inaveragegivenat‘Ipreferadifferentdesignforonlinequestionnairesandreports’.Thus,searching,questionnairesandreportingappeartobethelesspopularinterfacedesignsandneedtobetotallyredesigned.

Table14.ResponsesofPLWDintheusabilityquestionnaire

Pleaseindicatehowstronglyyouagreewiththefollowingstatements(1=stronglydisagree;10=stronglyagree)Question/Statement Mean SDIencounternoproblemsloggingintothesystem 4 3.13

Ifoundloggingintothesystemintuitive 4.46 2.84Ipreferadifferentdesignforlogin 6.58 3.20Iencounterednoproblemsinlocatingandupdatingmyprofile 5.3 2.40Ifoundlocatingandupdatingmyprofile(myaccount)intuitive 4.1 2.23Ipreferadifferentdesignforprofilemanagement 5.18 2.71Iencounternoproblemsmanagingdisordersandtreatments 2.90 1.70Ifoundmanagingdisordersandtreatmentsintuitive 3.41 2.27Ipreferadifferentdesignforthemanagementofdisordersandtreatments 6.7 2.35Iencounternoproblemsinsearchingandconnectingwithotheruserprofiles 4.27 2.57Ifoundmanagingconnectionswithotherusersintuitive 4.75 2.7Ipreferadifferentdesignforsearchingandconnectingwithother 7.09 2.34


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users

Iencounternoproblemsmanagingpostsandwallmessages 4.2 1.87Ifoundmanagingpostsandwallmessagesintuitive 4.5 2.02Ipreferadifferentdesignformanagingpostsandwallmessages 5.72 2.49Iencounternoproblemsparticipatinginanonlinequestionnaireaboutadherenceevaluationandreadingthereport 4.27 2.24Ifoundparticipatinginanonlinequestionnaireandreadingthereportintuitive 4 2.08

Ipreferadifferentdesignforonlinequestionnairesandreports 6.72 2.10Iencounternoproblemscommunicatingprivatelywithuserslikedoctors,otherpeoplelivingwithdementia,caregivers,helpersandsocialworkers(sendpersonalizedmessage,friendshiprequestorinvitation) 4.5 1.87Ifoundprivatecommunicationwithotherusersintuitive 4.57 1.71Ipreferadifferentdesignforprivatecommunicationwithothers 6.4 0.89Iencounternoproblemsincreatinganewticketanduploadingafile 4.2 1.98Ifoundcreatinganewticketanduploadingafileintuitive 3.5 2.07

Ipreferadifferentdesignforcreatinganewticketanduploadingafile 5.5 2.44Iencounternoproblemsinactivelyparticipatinginthecafé. 5.9 2.28IfoundactionsrelatedtotheCafeintuitive 4.1 2.02IpreferadifferentdesignfortheCafé. 5.62 2.77Icompletedalltasksrelatedtomyroleintheplatform 4.1 1.96Icanusethisplatformonmyown 2.83 1.85Thisapplicationwasuser-friendly 3.58 2.31Didtheplatformrespondatyourexpectations? 3.7 1.82Doyouunderstandthenotionofcircleintheplatform? 3.09 1.70Wouldyouliketoparticipateinthisplatformasagamecharacter(e.g.participateinagamestory,appearasanavatartoothers,havegoalsdefinedinandoutoftheplatform)? 4.63 2.37

OpenQuestions

Contrastandcolourissueswerereported.Splittingtheinformationintomultiplepageswasreportedasahelpfulwaytopresentthesameamountof informationwithoutinformationoverload. There were some issues related to the different mental models PLWD haveregardingsocialnetworks.Theyreportedtheneedtotypesomeone’snameinordertofindhim/her.Thus,theymaynotunderstandthebasicfunctionalityofanonlinesocialnetworkin which you find similar profiles of people to invite to your circle and that knowing inadvancethenamesofpeoplemaynotbepossible.So,peoplemayfeelsaferiftheywillbeabletotransferexistingsocialstructuresintotheironlinesocialnetwork.

Missingplatformfunctionalitywasnotreportedbecause,asresponderscouldnotfindwhatfunctionalitycouldfulfiltheirneedsortheyseenoconnectionofInternetserviceswiththeiractionstowardshealthcareprevention.


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CaregiversandHelpers–Demographics

PartA:AboutyouFromthecaregiversgroup,2wereMalesand18Females (Total20persons)withaverageage 55.66 years old (SD = 13.64). Apart from 15 persons who were responsible for oneperson,therestofCaregivershad30.83individualstotakecareof.Inthemajorityofcases,homewastheplaceofcaregivingservices(80%)andtherest20%wasaDayCareInstitution.The 60% of caregivers were relatives and members of the family. Four caregivers wereworking part-time (20%) professionals and another two were working full time (10%).Caregiversreportednonot-correctedimpairments.

PartB-UseofTechnology/CommunicationmeansCaregivers use a wide range of end-devices and make use of different Internet services.Communication(80%)andonlineentertainment(66%)areamongthemostpopularonlineactivities.AmoredetailedlistofInternetactivitiescanbeseeninFigure10.Theyusemorethan one device types for Internet connection: 76% of caregivers use PC, 71% use aSmartphone(Android/iPhone)andtabletandlaptopsharea5%inuser'spreferences.

Figure10.ResponsesofCaregiverstothequestion:‘WhatdoyouusetheInternetfor?’

Themostpopularwaysofcommunicationwithdoctorsandothercaregiversisface-to-facemeetingsathomeoratofficesandtelephoneconversations.Almosthalfofthem(45%)usemailsalso.

PartC-GamificationandGames

GamingpenetrationisrelativelygoodandmuchbetterthanPLWD,havingonethirdplayinggamesdaily,another33%notplayinggamesatall(33%),28%toplayonceaweekandonlytoplayinamonthlybasis.Thisresultsarestrengthenedbythefactthat57%havepositiveexperiences from gaming and only one person reported unchallenged experiences.Moreover,onlyonepersonreportedbarriersinplayinggames.62%ofcaregiversagreethatagame-likeexperiencefromanapplicationorawebpagewouldbenefitmoreandmotivatethemtoparticipate,whileagroupof5people(23%)disagreeonthosetwopoints.

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Caregivers were aware of scientific web pages about memory disorders (like CentroAlzheimer.org, Fatebenefratelli - Brescia – Alzheimer, Libera Università di Anghiari - LaMemoria, etc.). Their activities in thosewebsiteswas related to obtaining information oninnovativemethodsforapproachingPLWD,strategiesformemorymaintainingandvariouspsychologicalaspectsofDementia.

Most caregivers were mainly counting on face-to-face interviews with their PLWD formanaging medical data and treatment plan. Responders agreed that Internet and ICTtechnologiescanhelpinsharingexperiencesandpersonalopinions, inmakingquestionsinexperiencedforumsandlookingforeducationalandtrainingmaterials.Moreover,theyhavereportedthepsycho-social-behaviouralsupport,butmentionedalsotheneedtorespectandprotectofthePLWD’sprivacy.

Regarding risk detection and conditions prevention, most caregivers did not report anyknowncomputerizedmean.One respondentmentioned thebi-monthly tele-monitoringofCVDPLWD.Gamificationandtheuseofgamesinhealthcareapplicationsdonotseemtobeknown to caregivers. Although they see games and game-like activities in a positiveway,theyarenotawareofwaysgamificationcouldbeconnectedtoasocializedplatformabouthealthcare.

Caregivers–OpenQuestions

Openquestionshelped inmakingcomments issuedduringdemonstrationof theplatform.Caregivers understand their role as a complete attention to the person affected by theneurodegenerativediseaseandmayhavedifferentvaluesthanotherusergroupsandthosevaluesrangefromtheneedoffeelinginnerpeacetodotheirbest,tothedifficultythatthesacrificeofgivinguptheirownneedsonadailybasisinvolves.

Caregiversseetheirrole intheplatformascrucialasdementiaconditionsprogressanddonotallowPLWDtointeractwiththeplatform.Theyareawareofthefactthattheyhavetocommunicatewithdoctorsandothermedicalprofessionalsforalotofissues,rangingfromappointment to treatment management and actually see an invitation by medicalprofessionalsasessential step toparticipate intoa lotof theplatformactivities.Theyalsoappreciateanyhelpprovidedby the institutions,but they find thishelp tobevery limitedandconditionedbyfinancialresources.Thus,theplatformcouldprovideadditionalhelpatalmostnocostinadailybasis.

To this end, caregivers see enough room for development and they expect much morefunctionality to be added in future versions of the platform in order to provide a clearidentificationofthepotentialimpact.

Caregivers have identified certain features of the platform that requiresmodification, likefont sizes, colour contrast and variety in content and modalities in presenting theinformation. Some reported that they cannotdo some taskson theirown, like theprofile


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completion and the participation in the Café. Others reported no problems, but theyconcernaboutthepossibilityPLWDtofacedifficultiesinperformingin-platformtasks.

Caregivers–Platform

ClosedQuestions

Caregiversrespondedwellinalmostallquestionsrelatedtotheplatform.Theaveragescoreinallquestionsofthetype“Iencounterednoproblemsin…’wasfoundequalto7.07.Similarresultswerefoundforintuition(7.05inaverageforstatementsoftype‘Ifound…intuitive).Ontheotherhand,there isenoughroomfor improvementsaccordingtothe5.98averagescore in the statements of type: ‘I prefer a different design for…’. The highest scorewasrecorded by the statement related to the posts andwallmessages.We need to design amessagingsystemsimpleanduseful,butalsototrainusershowtolocatereceiversfortheirposts.

Regardingtheusefulnessoftheplatformtodelay institutionalizationforpeople livingwithdementiacaregiversarecautiouslyoptimisticwithanaveragescoreof6.44 (SD=3.35). Inoverall,theoldversionoftheplatformdidnotrespondwellincaregiversexpectations(M=5.81,SD=2.97).Althoughthe62%ofthecaregiversgroupagreethatgame-likeexperiencesfromanapplicationorawebpagemotivatethemtoparticipate,the8.44(SD=2.42)inthequestion ‘Would you like to participate in this platform as a game character’ possiblyindicate that after a hands-on experience with the platform they may find a clearerconnectionwiththegamificationapproach.

Table15.Responsesofcaregiversintheusabilityquestionnaire

Pleaseindicatehowstronglyyouagreewiththefollowingstatements(1=stronglydisagree;10=stronglyagree)Question/Statement Mean SDIencounterednoproblemsinlocatingandupdatingmyprofile(myaccount) 6.94 2.79

Ifoundlocatingandupdatingmyprofile(myaccount)intuitive 7.69 2.15

Ipreferadifferentdesignforprofilemanagement 5.69 3.32

Iencounternoproblemsmanagingdisordersandtreatments 6.81 2.76

Ifoundmanagingdisordersandtreatmentsintuitive 7.56 2.56

Ipreferadifferentdesignforthemanagementofdisordersandtreatments 6.25 3.34

Iencounternoproblemsinsearchingandconnectingwithotheruserprofiles 7.69 2.70Ifoundmanagingconnectionswithotherusersintuitive 7.88 2.66Ipreferadifferentdesignforsearchingandconnectingwithotherusers 6.81 3.64Iencounternoproblemsmanagingpostsandwallmessages 8.63 2.68Ifoundmanagingpostsandwallmessagesintuitive 6.69 3.28Ipreferadifferentdesignformanagingpostsandwallmessages 7.88 3.32Iencounternoproblemsparticipatinginanonlinequestionnaireaboutadherenceevaluationandreadingthereport 7.38 2.99


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Ifoundparticipatinginanonlinequestionnaireandreadingthereportintuitive 7.38 2.80Ipreferadifferentdesignforonlinequestionnairesandreports 5.50 2.97Iencounternoproblemscommunicatingprivatelywithuserslikepeoplelivingwithdementia,doctors,othercaregivers,helpersandsocialworkers(sendpersonalizedmessage,friendshiprequestorinvitation) 6.30 2.26Ifoundprivatecommunicationwithotherusersintuitive 6.00 2.83Ipreferadifferentdesignforprivatecommunicationwithothers 4.80 3.22Iencounternoproblemsincontactingothercaregiversinthecafé 7.06 2.38Ifoundcontactingothersinthecaféintuitive 6.75 2.84Ipreferadifferentdesignforcontactingotherinthecafé 5.31 3.30Iencounternoproblemsinactivelyparticipatinginthecafé. 5.75 3.07IfoundactionsrelatedtotheCafeintuitive 6.44 2.92IpreferadifferentdesignfortheCafé. 5.56 2.97Icompletedalltasksrelatedtomyroleintheplatform 7.25 3.00Icanusethisplatformonmyown 7.63 2.19Thisapplicationwasuser-friendly 7.69 2.30Howusefulyouconsidertheplatformtofollowuppeoplelivingwithdementia? 6.94 2.98Howusefuldoyouconsidertheplatformtodelayinstitutionalizationforpeoplelivingwithdementia? 6.44 3.35Didtheplatformrespondatyourexpectations? 5.81 2.97Wouldyouliketoparticipateinthisplatformasagamecharacter(e.g.participateinagamestory,appearasanavatartoothers,havegoalsdefinedinandoutoftheplatform)? 8.44 2.42Doyouunderstandthenotionofcircleintheplatform? 7.33 2.87

OpenQuestions

Caregiversreportedawiderangeofissues,fromfacedpsychologicalconditions,thefeelingofdutytoself-evaluationissuesthatneedtobeaddressed.Greatimpressionwasmadebythefactthattheyfeelisolatedandtheyhavetodealwiththeunwillingnessofotherfamilymemberstoprovidehelp.

Apart from ‘moral conflict’ issues, caregivers expressed their expectations on thecommunicationandsupportfeaturesoftheplatform.Theymadedirect indicationsrelatedto the font size, the used colours and the layout of the interface designs. The nameCafécreatedsomeconfusiontoapartofcaregiversastheyalreadyknewtheterm‘Forum’andthismade themwonder on the differences between those two. People likes symbols andsmileyfaces,buttheyreportedtheneedtohaveforeachiconatextualdescriptiongivenatthesametime.Althoughtheyfoundthattheplatformcanmeetsomeoftheirexpectations,they will appreciate managing contacts. It has been reported that questionnaires aboutmemoryandonhowpeoplefeelwouldbeusefulifincludedinthequestionnairessectionoftheplatform.Otherssaidthatthereisnothingmissingfromtheplatform,buttheinterfacedesignshouldbesimpler.

People appreciated the fact that they were given the option to choose whether a newmessageorpostwouldbeavailable inaprivatecircleor inawider communityofpeople.


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The interest on applying control over the personal information was reported on variousoccasions during the open interviews.Oneof themost important features of the presentandfutureplatformwouldbethetreatmentadherenceaccordingtotheparticipants.Theyalsohighlightedtheimportanceofreminders,especiallyforthosehavingmemoryproblems.

Doctors–Demographics

PartA:Aboutyou

19doctorsandothermedicalprofessionals,includinggeriatriciansandexpertsfromvariousalliedprofessions(5malesand14females)tookpartinthisinterview,aged42.5inaverage(SD=7.59).Apartfromthefourlanguages(Spanish,Italian,EnglishandFrench),CatalanandRussianwerereportedasspokenlanguages.AllmedicalprofessionalsreportedaninstitutionasaplaceofworkandtheyaveragenumberofPLWDtheyareresponsibleforwas4.25(SD=3.2).Halfof themwere responsible for less thanorequal to25peopleat the timeof theinterview.Otherswere responsible for less than 50 (10%), less than 100 (15%) andmorethan 100 (15%). Having in mind that the time those people can devote on offeringprofessional services to individuals is inversely proportional to the number of PLWD theysupport,we can easily understand that business processeswithin the platform should befastenoughtobeconsideredusefulandefficient.

Responders in this groupwere very experienced, having 36%of themwithmore than 20years of professional experience, another 36% 10 to 20 years of experience and only the15%hadlessthanfiveyears.Almosthalfofthem(52%)offertheirprofessionalservicesinahospital or clinic, while the 42% work in other places such as Research & DevelopmentdepartmentortheFSSM(DementiaUnitoftheFundaciónSociosanitariadeManresa).Onepersonworksinthehomeofpeoplelivingwithdementiaandanotheronereportedthelocalmentalhealthcommunityasaphysicalplaceofofferingservices.

RegardingtheuseofTechnology/Communicationmeans,respondersgaveabalancedrangeof activities having contacts, ordonnance and professional reading the three mostperformedactivities.ThefrequenciesofallprofessionalactivitiescanbefoundonFigure11.

Figure11.ClinicalactivitiesmedicalprofessionalsusetheInternetfor

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In themultiple response questions asking whatmeans of communication do you use forsocialization with other doctors and healthcare professionals and also for the dyads,responders reportedmultipleways andmeans of communication. Emails and phone callsare featured at the first two places of the list in Figure 12. Differences between otherprofessional sand dyads are focused on seminars and forumswhich are clearly used as amean of communication with other professionals. Thus, those features (seminars andforums)shouldbeconsideredasappropriatewaystocommunicatewithotherprofessionalswithin the platform and keep others means of communication for between dyads andprofessionals.

Figure 12. Popularways andmeans of communication: a) for doctors, experts and othersmedicalprofessionals(right)andb)forthedyads(left)

58% (12 out of 19 responders) said they like to play games. One third (33%) of themreportedtheyplayonceaweek,another33%onceamonthandtheresteveryday.Fromthepeoplewhoreportedgamingactivities,58%hadpositiveexperiencesandtherest42%reported nonchalance experiences. An impressive portion of medical professionals (79%)believethatagame-likeexperiencefromanapplicationorawebpagewouldmotivatetheirpeople livingwith dementia and their caregivers to participate in the platform.Only 21%disagreeorstronglydisagreeonthisstatement.

The positive attitudes professionals have on the use of games in a healthcare platform isshownintheresponsestothenextstatement'Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldbenefitmore',inwhich63%agreeorstronglyagreeonthisstatement,15%gaveaneutralresponse,another15%disagreeandonlyonepersonstronglydisagrees.

PartD:Semi-StructuredInterview

Someprofessionals reported theydonot currently use ICT todetect, preventordiagnosedisease. Others mentioned applications such as telemonitoring for falls preventions andcardiac periodic check, andmore in general, telemonitoring devices. Butmost agree thatInternet is a resource for scientific contents (via PubMed), national websites, seminars,workshopsscientificpublications,books(seeTable16).Awebsiteoranonlineplatformcanhelp them by giving information on treatment adherence, giving a means of monitoringcaregiver’s burn-out and to follow behavioural disorders with various scales (like fortreatmentadherence,psycho-behaviouraldisorders,nutritional intake,BodyMass Index,afollow-upofweight,activitydailyliving,etc.).


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Another interest, according to responders, is to have professional information on thedisease(news,recommendations,linkswithinterestingprofessionalsites,etc.)andshareitwithPLWDandtheircaregiversbutthesemassiveconsultationsmustbetakenbydyadsaseminently indicative. Professionals should proceed with diagnosis and consolation withcaution. This could be addressed using visual indications and textual descriptions in theinterfaces to notify dyads that direct consultations by doctors and other medicalprofessionals should be considered more useful and secure than massive or ‘blind’consolation.

Table16.OnlineresourcesprofessionalsthinkthatcouldbeusefulforPLWDand/ortheircaregivers

A/A Nameofresource

1 Forumorexchangeofexperience

2 SitesonAlzheimer’sdiseaselike“FranceAlzheimer”

3 Sitesofsocialorganisation(i.e.:CLIC,CCAS….)

4 Sitesinordertofindalistofcontacts(doctors,nurses,…)

5 Onlinehealthrecord

6 Informationontherapeutics

7 Informationonthediseaseandcaregiving

8 Informationonpsycho-compartmentaldisorders

9 Geriatricsites

10 InformationonRespitecare

11 FranceAlzheimerorforum(byFrenchgeriatrics)

12 NationalandEuropeannetworks

13 liablesourcessuchaswww.centroalzheimer.org;www.neuropsicologia.it)

14 Previousprojectsandexperiences(e.g.Nacodealproject)

Otherprofessionals focusedontheuseofmedicalandscientificdata.Especiallydatafromtrackingofdifferentparameterscanbecrossedwithadrug’sprescription,thusbeingabletodefine clinical actions in a better way (not having to wait for long time to see if theprescribeddrughadthedesiredeffectornot.Inanycase,onlyself-administeredscalesandquestionnaires shouldbe included into theplatform (scales about lifequality,behaviouralscreening or other aspects), as for all others (e.g. Mini-Mental, Barthel) a professional isrequired.Moreover,pharmacologicalissuescouldbeaddressedinabetterwaythroughtheplatform. There have been cases where the treatment is stopped due to a prescriptionexpiringwithouttheusercontrollingthesituationcouldbeavoided.


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Doctors–Platform

ClosedQuestions

Basedontheparticipant'sresponses,thereweresomeusability issuesduringtheplatformtestingasindicatedbytheaveragescoresinstatementsoftype'Iencounterednoproblemsin...'whishwasfoundequal to6.44.The lowestscorewasachievedbythetaskofpostingmynewscientificcontributionwithaveragescore4.80.Apossibleexplanationisthatsomefunctionality related to medical professionals may was not validated at the time of theinterviews. In addition, intuition was not as high as expected (M = 6.12) and respondersrequiredadifferentinterfacedesignwithscore5.40inaverage.Fromasdesigner’spointofview, the interfaces used in searching and connecting with other user profiles,communicating privately with other users and creating a new case should be totallyredesignedandcarefullycheckedastheycollectthemostnegativescores.

Table17.ResponsesofDoctorsandothermedicalprofessionalsintheusabilityquestionnaire

Pleaseindicatehowstronglyyouagreewiththefollowingstatements(1=stronglydisagree;10=stronglyagree)Question/Statement Mean SDIencounterednoproblemsinlocatingandupdatingmyprofile(myaccount) 7.61 3.01Ifoundlocatingandupdatingmyprofile(myaccount)intuitive 7.70 2.27Ipreferadifferentdesignforprofilemanagement 5.26 3.77Iencounternoproblemsmanagingdisordersandtreatments 6.75 2.14Ifoundmanagingdisordersandtreatmentsintuitive 6.19 2.61Ipreferadifferentdesignforthemanagementofdisordersandtreatments 6.18 3.30Iencounternoproblemsinsearchingandconnectingwithotheruserprofiles 5.71 3.12Ifoundmanagingconnectionswithotherusersintuitive 5.14 3.03Ipreferadifferentdesignforsearchingandconnectingwithotherusers 6.09 3.28Iencounterednoproblemsduringtheoverviewofthecockpitofpeoplelivingwithdementia? 7.04 3.15Ifoundoverviewingcockpitofthepeoplelivingwithdementiaintuitive. 6.52 3.10Ipreferadifferentdesignforoverviewingofthecockpitofpeoplelivingwithdementia. 5.13 3.78Iencounternoproblemsmanagingevaluations 7.33 2.22Ifoundmanagingevaluationsintuitive 7.57 2.11Ipreferadifferentdesignformanagingevaluations 4.81 2.82Iencounternoproblemscommunicatingprivatelywithuserslikepeoplelivingwithdementia,otherdoctors,caregivers,helpersandsocialworkers(sendpersonalizedmessage,friendshiprequestorinvitation) 5.76 3.29Ifoundprivatecommunicationwithotherusersintuitive 5.31 2.77Ipreferadifferentdesignforprivatecommunicationwithothers 5.82 3.19Iencounternoproblemsincreatinganewcase 5.74 3.81Ifoundcreatinganewcaseintuitive 5.37 3.61Ipreferadifferentdesignforcreatinganewcase 4.63 3.56Iencounternoproblemsinpostingmynewscientificcontribution 4.80 3.78Ifoundpostinganewscientificcontributionintuitive 5.14 3.77


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Ipreferadifferentdesignforcreatinganewscientificcontribution 5.29 3.72Icompletedalltasksrelatedtomyroleintheplatform 5.95 2.44Thisapplicationwasuser-friendly 6.57 2.21Howusefulyouconsidertheplatformtofollowuppeoplelivingwithdementia? 7.87 1.71Howusefuldoyouconsidertheplatformtodelayinstitutionalizationforpeoplelivingwithdementia? 5.17 3.47Didtheplatformrespondatyourexpectations? 6.24 2.93Wouldyouliketoparticipateinthisplatformasagamecharacter(e.g.participateinagamestory,appearasanavatartoothers,havegoalsdefinedinandoutoftheplatform)? 6.88 3.33

OpenQuestions

Althoughitwaspointedoutthedifficultyinstandardizationofmedicalcontrols(duetotheseveral stages of dementia and severity), responders reported that the platform canimprove:a)treatmentadherenceusingalertshighlightingsymptomsandgivingcontent,b)follow,orcontrolofthepeoplelivingwithDementiaandpreventotherdiseasesbutthisisuseful only for caregivers and not for PLWD and c) The platformmay caregiver burn-outdetection. Typical items and functional requirements about usability and accessibility thatneedtobetakenintoconsiderationwerementioned.

Regarding interfacedesigns and taking intoaccount thatPLWDand caregivershavea lowknowledge on ICT, some guidelines provided by doctors, geriatrics, experts and othermedical professionals are presented in Table 18. Most of those comments andrecommendationsarerelatedtotheneedtohavegreaterattentiontotheintuitivityoftheplatform,theaccessibilityandthevisualappearance.

Table18. A collectionof comments anddesignguidelines to improveplatformdesignaccording todoctor’srecommendations

A/A Designguidelinedescription1 HaveadesignthatcanhelpPLWDandcaregiverstobrowse2 Thedesignisnotintuitive,notuser-friendlyandnotfun3 ThepresentationisnotintuitiveforPLWDandcaregivers4 Improvefunctionality,changethecoloursforbrightcolours,

recreational,attractiveness,addicons5 Improvethedesignwithamorefriendlydesign-for-allinterfaces6 Fontsizemaybeincreased(eyeimpairment)7 Designistoosad.Itneedsmorecolours8 HavelargeiconsandhavemessagetohelpPLWD,caregiversto

understandactionsbehindicons.9 Theleftbannerisnotoptimalanddifficulttounderstand10 Havelargeemoticons.Choiceofemoticonscoloursisnotoptimal.11 HaveanagendaforPLWD(date,hour,seasonandwhynotweather..)12 Nottoomuchinformationinonepage13 Haveafunction“return”

14 Issuewithpulldownmenu:toodifficultforPLWDandsomecaregivers15 Havinganiconforsocialinformation16 Usewordsthatareeasytounderstand17 Professionalsarenotfriendsbutcreateasection:professionals


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18 Becarefulwithcolourscodes(riskofconfusion…).Acolourcodeforeachuser.

19 Viewonalerts20 Takeintoaccountconfidentialityofinformation21 Let the platform to be a container of validated and clinically useful

gamesandprovidemoreopportunitiesofentertainmenttogetherwithcaregiversandsocialsurroundings

22 Add audio-visual reminders and daily list of the prescriptions, assummaryofthewholemedicaltreatmentfortheday,includingalertinthemaintimeframe(breakfast,lunchanddinnertime).

SocialWorkers-DemographicsPartA:Aboutyou

13SocialWorkers,all females,aged45yearsold inaverageparticipated inthe interviews.Themajority of the responders were experienced social workers having over 10 years ofexperience(77%ofparticipants).RegardingthenumberofPLWDtheyfollowatthetimeoftheinterview,wehavetwosubgroups:onewithlessthan25people(60%)andanotheronefollowingmorethan100(40%).

Regardingtheworkingplace,66%inbothDayCare Instituteand inaHospital/clinic,whilethe Hospital/Clinic was selected by the 84% of the responders as a physical context ofdeliveringprofessionalservices.

PartB:UseofTechnology/Communicationmeans

Responses in relation to the used communication means spread over various options.Telephone,mail and home visits are the typicalmeans of communicationwith dyads andotherprofessionals, both for communicatingwithother SocialWorkersmoremeanswereusedlikeforumsandworkshops.

PartC:GamificationandGames

Allparticipantsreportedapositiveattitudeinthepossibilitytousegame-likeexperiencesinthe platform and actually reported they are gamers themselves. The 53% of respondersreportedtheyplaygamesdaily,30%playonceaweekoronceamonthandonly15%donotplaygamesatall.


There is someevidenceonusing the Internetasa source toget informationonDementiadiseases,butSocialWorkersstillrelyontraditionalmeansofcommunicationlikepapersandtelephones.TheuseofICTtoolsforriskdetectionandconditionspreventionisnotcommon.The interesting thing in this group of professionals is the fact that they are good ICT andInternet users and they use those computerizedmeansmore frequently for personal andprofessionalwork,butforsocialworking,oralcommunicationismoreimportant.

They see the platform and the social network as the devices to break down the socialisolation of PLWD, share experiences with others and facilitate communication betweenallied professions (e.g. Social Workers and medical professionals). They highlighted theimportance of security and privacy and give room for eLearning activities within theplatform. Itwasproposedtoapplygamification ineLearningactivitiesaswell (Gamesthatdeliverinformationasreported).


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SocialWorkers–Platform

SocialWorkersdidnotfaceseriousproblemsindemousingtheplatformasindicatedbythe7.05averagescoreinstatementsrelatedtoproblemsencountered.Theyfoundtheplatformquite intuitive (M= 7.28) and theydonot strongly demanda redesignof theplatformasindicatedbytheaveragescoresinthestatementsoftype'Ipreferadifferentdesign...'(M=3.06).MoredetailedinformationcanbeseeninTable19.

Table19.ResponsesofSocialWorkersintheusabilityquestionnaire

Pleaseindicatehowstronglyyouagreewiththefollowingstatements(1=stronglydisagree;10=stronglyagree)Question/Statement Mean SD

Ifoundlocatingandupdatingmyprofile(myaccount)intuitive 7.10 2.85

Ipreferadifferentdesignforprofilemanagement 2.70 1.95Iencounterednoproblemsduringtheoverviewofthecockpitofpeoplelivingwithdementia. 8.70 1.16

Ifoundoverviewingthecockpitofthepeoplelivingwithdementiaintuitive. 8.40 1.26Ipreferadifferentdesignforoverviewingofthecockpitofpeoplelivingwithdementia. 1.80 0.63

Iencounternoproblemsmanagingpostsandwallmessages 7.30 3.20

Ifoundmanagingpostsandwallmessagesintuitive 6.80 3.19

Ipreferadifferentdesignformanagingpostsandwallmessages 3.80 3.08Iencounternoproblemscommunicatingprivatelywithuserslikepeoplelivingwithdementia,doctors,othercaregivers,helpersandsocialworkers(sendpersonalizedmessage,friendshiprequestorinvitation) 5.40 4.27

Ifoundprivatecommunicationwithotherusersintuitive 5.70 3.97

Ipreferadifferentdesignforprivatecommunicationwithothers 5.00 3.92Iencounternoproblemsinupdatingsocialinformationofpeoplelivingwithdementia. 8.40 0.55

Ifoundupdatingsocialinformationofpeoplelivingwithdementiaintuitive. 8.40 0.55Ipreferadifferentdesignforupdatingsocialinformationofpeoplelivingwithdementia. 2.00 1.00

Icompletedalltasksrelatedtomyroleintheplatform 5.50 4.01

Thisapplicationwasuser-friendly 6.60 3.78Howusefulyouconsidertheplatformtofollowthesocialstatusofpeoplelivingwithdementia? 7.80 1.75

Didtheplatformrespondatyourexpectations? 7.40 2.41Wouldyouliketoparticipateinthisplatformasagamecharacter(e.g.participateinagamestory,appearasanavatartoothers,havegoalsdefinedinandoutoftheplatform)? 7.60 2.84


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4 ComparisonbetweensitesAlthough participants share common characteristics, it was found that from site to site,there were some interesting differences. The following section presents some key-pointsresultedfromacross-site(andthusacross-country)analysisoftheinterviewresultsforthedyads. For other users groups like professionals, the differences do not appear to besignificantfromthedesigner’spointofview.Thoseresultsneedtobecross-checkedagaininlater Focus Group interview cycles and also they need to be verified by larger groups ofparticipants.

PLWD

Participants who live with Dementia are fully retired fromwork in all sites and they liveindependently.ButinSpainPLWDlivewithmorefamilymembers(3and4),whileintherestcountriesitismoreoftenthatPLWDlivealone.

From those who use the Internet, PLWD responded in a similar way on the technology-related questions, but in UHULL they use awide range of Internet technologies and theyconsumemoreInternet-basedservicesthaninothercountries.

InFUBandUHULLresponderspreparetheirtreatmenttotheweekwithaweekboxortheydon'tprepare their treatment themselves.On theotherhand, inCHU-ROUENandCOOSS,responders reported that they take their treatment day after day,without preparation ortheypreparetheirtreatmenttothedaywithboxes(morning;afternoon;evening).

Regardinggamepreferences,inFUBtheyplaygamesmore(83%oftheresponders)thaninothersitesinwhichrespondersdonotplaygamessooften.But,interviewparticipantsfromall countries agree that a game-like experience from an application or a webpage wouldmotivatethemtoparticipateintheplatform.

Caregivers

InCHUrespondersreportedmoreplacesofdeliveringservicesthanhomeofPLWDoradaycare institute. In FUB and UHULL most caregivers are family members, while in othercountriestheyarespreadinparttimeorfulltimeprofessionalcaregivers.Moreover,inFUBcaregiversismorepossibletobechildren.

InallcountriesthewayInternetisusedappeartobesimilar,butinCOOSSandCHUpeopleprefertouseapersonalComputer(PC)moreoften. Intherestsites,respondersusemoredevicesthanPC(includingtablets,smartphonesandlaptops).

Caregivers fromallsitesagreethatgamescanprovidemotivationtothemandthatgame-likeexperiencesfromanapplicationorawebpagewouldbenefitmore.

Bothdyadmembers(PLWDandcaregivers)reportedproblemsinaccessibilityofthecurrentversion of the platform and especially mentioned font sizes and the use of icons andpictures.


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5 ReferencesObarJA.,WildmanS.(2015).Socialmediadefinitionandthegovernancechallenge:An

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McCallumS.(2012).GamificationandSeriousGamesforPersonalizedHealth,Studiesinhealthtechnologyandinformatics,177,pp.85-96.

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AnnexA-QuestionnairesQuestionsarenumberedaccordingtothisrule:

• Thefirstletterindicatestheusergroup{P,C,H,D,S}• ThesecondletterindicatestheDemographicsorUsabilitytest{D,U}• Thethirdletterindicatesthepartofthequestionnaire{A,B,C,D}

PLWD-Demographicsquestionnaire

PartA-Aboutyou

PDA1.Firstname

{Textbox}

PDA2.Surname

{Textbox}

PDA3.Sex(*atthetimeofbirth)

Male

Female


PDA4.Age

{Textbox,blockoffanykeystrokethatisnotanumber}

PA5.Typeofmemoryproblem,ifknown(Multiplechoice)

MildNeurocognitiveDisorder

ModerateNeurocognitiveDisorder

MajorNeurocognitiveDisorder

NoNeurocognitiveDisorderConditions

Idonotknow


PDA6.Yearoffirstdiagnosisofmemoryproblem(Ifmemoryproblemknown)

{Comboboxcontrolwithfirstchoice'Idonotknow'andthenyearsfrom1980to2016}

PDA7.MotherLanguage(Multiplechoice)

English

French

Spanish

Italian


PDA8.WorkStatus(Multiplechoice)

Unemployed

Parttimeemployed


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Fulltimeemployed

Ontraining/educationprogramme

Whollyretiredfromwork

Lookingafterhome


PDA9.IfnotRetired,mainTypeofEmploymentStatus(Multiplechoice)

Worker

Employee

Self-employedandcontractor

Director

OfficeHolder


PDA10.LevelofEducation(accordingtoISCED2011,Multiplechoice)

0-Earlychildhoodeducation

1-Primaryeducation

2-Lowersecondaryeducation

3-Uppersecondaryeducation

4-Post-secondarynon-tertiaryeducation

5-Short-cycletertiaryeducation

6-Bachelor’sorequivalentlevel

7-Master’sorequivalentlevel

8-Doctoralorequivalentlevel

9-Notelsewhereclassified

PDA11.Numberofpeopleinyourhouseholdincludingyourself(Multiplechoice)

1

2

3

4+

PDA12.Livingstatus(Multiplechoice)

Livingathomeindependently

Livingathomewithhealthcareprovidedbyfamilymember

Livingathomewithhealthcareprovidedbyprofessionalcarer

Livingincarehome


PDA13.Visual,acoustic,ormotorImpairments(Multipleresponse)


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Lowvision(notcorrected)

Hearingloss(notcorrected)

UpperLimbsDisorder

SpeechorLanguageDisorders

Nospecificimpairment


PartB-UseofTechnology/Communicationmeans

PDB1.WhatdoyouusetheInternetfor?(Multipleresponse)

Communication(email,videochat,etc.)

OnlineShopping/Selling

OnlineEntertainment(video/movies,games,music,etc.)

NewsReading

Work

SocialNetworks

Sharinginformation(blogging,photosharing,etc.)

Education/Training

Lookingformedicaladvice

IdonotusetheInternet


PDB2.Whichkindofdevicesyouprefer/feelmoreconfidenttouse?(Multipleresponse)

PersonalComputer(PC)

Tablet/iPad

Laptop

Smartphone(Android/iPhone)


PDB3.Whatothermeansofcommunicationdoyouuseforsocializationwithotherpeoplelivingwithdementia?(Multipleresponse)

Club(reading,games,craft,sport…)

Memoryworkshop(inainstitution)ordayhospital

Forumdiscussionorsocialnetwork

Others(Pleasespecify):………………………………...

PDB4.Whatmeansdoyouuseforcommunicationwithyourdoctorandyourcaregiver?(Multipleresponse)

Visitathome/doctor'soffice

Telephoneconversation

Mailconversation


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PDB5.Whatmeansdoyouuseforself-managingyourtreatment?(Multiplechoice)

Itakemytreatmentdayafterday,withoutpreparation

Ipreparemytreatmenttothedaywithboxes(morning;afternoon;evening)

Ipreparemytreatmenttotheweekwithaweekbox

Idonotpreparemyselfmytreatment

Other(tospecify):…………………………………..

PartC-GamificationandGames

PDC1.Howoftendoyouplaydigitalgamesofanykind(e.g.puzzles,leisuregames)?(Multiplechoice)

Iplaynogames

Onceaweek

Onceamonth

Everyday

PDC2.Ifyouplaydigitalgames,canyoutellusaboutyourexperiences?(Multiplechoice)

Positiveexperiences

Negativeexperiences

Barrierstousinggames

Nonchalanceexperiences


PDC3.Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldmotivatemetoparticipate.

1-Stronglydisagree

2-Disagree

3-Neutral

4-Agree

5-Stronglyagree

PDC4.Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldbenefitmore.

1-Stronglydisagree

2-Disagree

3-Neutral

4-Agree

5-Stronglyagree

PartD-Semi-StructuredInterview(OpenQuestions)

PDD1.Haveyoueverusedanapplicationorawebpageaboutmemorydisorders?Whatwasyourexperience?


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PDD2.Whatmeansdoyouuseformanagingofyourpersonalmedicaldataandtreatmentplan?

PDD3.HowtheinternetandICTtechnologiesmightsupportyouormeetyourneedsontreatmentmanagement?

PDD4.Whateffectswouldyouexpectfromagamifiedhealthcareapplicationorwebpageonitsusers?(e.g.reduceboredom,maximizeengagementtime,treatmentadherence,etc.)

PDD5.Whatkindofgameswouldyouliketoplayinahealthcareapplication?Forwhatreason?(forskillstraining,leisure,socialization,etc.).

PLWD-PlatformQuestionnaire(afterdemonstrationoftheplatform)

PartA–PerceivedUsability

Pleaseindicatehowstronglyyouagreewiththefollowingstatements(1=stronglydisagree;7=stronglyagree)

PUA1.Iencounternoproblemsloggingintothesystem

PUA2.Ifoundloggingintothesystemintuitive

PUA3.Ipreferadifferentdesignforlogin

PUA4.Iencounterednoproblemsinlocatingandupdatingmyprofile(myaccount)

PUA5.Ifoundlocatingandupdatingmyprofile(myaccount)intuitive

PUA6.Ipreferadifferentdesignforprofilemanagement

PUA7.Iencounternoproblemsmanagingdisordersandtreatments

PUA8.Ifoundmanagingdisordersandtreatmentsintuitive

PUA9.Ipreferadifferentdesignforthemanagementofdisordersandtreatments

PUA10.Iencounternoproblemsinsearchingandconnectingwithotheruserprofiles

PUA11.Ifoundmanagingconnectionswithotherusersintuitive

PUA12.Ipreferadifferentdesignforsearchingandconnectingwithotherusers

PUA13.Iencounternoproblemsmanagingpostsandwallmessages

PUA14.Ifoundmanagingpostsandwallmessagesintuitive

PUA15.Ipreferadifferentdesignformanagingpostsandwallmessages

PUA16.Iencounternoproblemsparticipatinginanonlinequestionnaireaboutadherenceevaluationandreadingthereport

PUA17.Ifoundparticipatinginanonlinequestionnaireandreadingthereportintuitive

PUA18.Ipreferadifferentdesignforonlinequestionnairesandreports

PUA19.Iencounternoproblemscommunicatingprivatelywithuserslikedoctors,otherpeoplelivingwithdementia,caregivers,helpersandsocialworkers(sendpersonalizedmessage,friendshiprequestorinvitation)

PUA20.Ifoundprivatecommunicationwithotherusersintuitive

PUA21.Ipreferadifferentdesignforprivatecommunicationwithothers

PUA22.Iencounternoproblemsincreatinganewticketanduploadingafile


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PUA23.Ifoundcreatinganewticketanduploadingafileintuitive

PUA24.Ipreferadifferentdesignforcreatinganewticketanduploadingafile

PUA25.Iencounternoproblemsinactivelyparticipatinginthecafé.

PUA26.IfoundactionsrelatedtotheCafeintuitive

PUA27.IpreferadifferentdesignfortheCafé.

PUA28.Icompletedalltasksrelatedtomyroleintheplatform

PUA29.Icanusethisplatformonmyown

PUA30.Thisapplicationwasuser-friendly

PUA31.Didtheplatformrespondatyourexpectations?

PUA32.Doyouunderstandthenotionofcircleintheplatform?

PUA33.Wouldyouliketoparticipateinthisplatformasagamecharacter(e.g.participateinagamestory,appearasanavatartoothers,havegoalsdefinedinandoutoftheplatform)?

PartB–OpenQuestions

PUB1.Howcouldweimprovethedesign?(Colours,fonts,layouts,etc).

PUB2.Pleaseindicatewhichtasks/stepsweremoredifficulttocomplete.

PUB3.Whatwereyourexpectationsregardingtheplatform?

PUB4.Whatfeatureswouldyouliketoaddinorremovefromthisplatform?

PUB5.Whatkindofself-reportedquestionnairesanddata-collectiontoolsyoumightliketobeincludedintheplatform?(formemory,cognition,anxiety,depression,etc.).

PUB6.Howdoyouunderstandwhatisasocialnetworkanditsbenefits?

PUB7.Couldyoudescribeinyourownwordswhatisanhealthonlinecommunityanditsbenefits?

PUB8.Howsharingyourexperienceswithothersandaskforsupportmakesyoufeel?

PUB9.Doyouunderstandthattheresultoftheonlinequestionnaireswillservetoalertdoctorsormembersofmycircleincaseofemergency?Howthatfeaturemakesyoufeel?

PUB10.Istreatmentadherenceimportanttoyou?Howawebplatformcouldhelp?

Caregivers-Demographicsquestionnaire

PartA-AboutyouCDA1.Firstname{Textbox}CDA2.Surname{Textbox}CDA3.Sex(*atthetimeofbirth)MaleFemaleOther(pleaseindicate):{Textbox}CDA4.Age


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{Textbox,blockoffanykeystrokethatisnotanumber}CDA5.MotherLanguage(Multiplechoice)EnglishFrenchSpanishItalianOther(pleaseindicate):{Textbox}CDA6.Numberofpeoplelivingwithdementiayouareresponsiblefor?{Textbox,blockoffanykeystrokethatisnotanumber}CDA7.Context/Placeofcaregivingservices(Multiplechoice)DaycareinstituteHomeofpeoplelivingwithdementiaHospital/ClinicCommunitymentalhealthteamOther(pleaseindicate):{Textbox}CDA8.WorkStatus(Multiplechoice)ParttimeemployedascaregiverFulltimeemployedascaregiverOntraining/educationprogrammeRelative/FamilyOther(pleaseindicate):{Textbox}CDA9.LevelofEducation(accordingtoISCED2011,Multiplechoice)0-Earlychildhoodeducation1-Primaryeducation2-Lowersecondaryeducation3-Uppersecondaryeducation4-Post-secondarynon-tertiaryeducation5-Short-cycletertiaryeducation6-Bachelor’sorequivalentlevel7-Master’sorequivalentlevel8-Doctoralorequivalentlevel9-NotelsewhereclassifiedCDA10.Whatisyourrelationshipwithyourpeoplelivingwithdementia?(Multiplechoice)SpouceChildrenGrandchildParentBrother/SisterFriendNeighbourOther(tospecify):…………………………………..CDA11.Visual,acoustic,ormotorImpairments(Multipleresponse)Lowvision(notcorrected)


CAREGIVERSPRO-MMD


Hearingloss(notcorrected)UpperLimbsDisorderSpeechorLanguageDisordersNospecificimpairmentOther(pleaseindicate):{Textbox}

PartB-UseofTechnology/CommunicationmeansCDB1.WhatdoyouusetheInternetfor?(Multipleresponse)Communication(email,videochat,etc.)OnlineShopping/SellingOnlineEntertainment(video/movies,games,music,etc.)NewsReadingWorkSocialNetworksSharinginformation(blogging,photosharing,etc.)Education/TrainingLookingformedicaladviceIdonotusetheInternetOther(pleaseindicate):{Textbox}CDB2.Whichkindofdevicesyouprefer/feelmoreconfidenttouse?(Multipleresponse)PersonalComputer(PC)Tablet/iPadLaptopSmartphone(Android/iPhone)Other(pleaseindicate):{Textbox}CDB3.Whatmeansdoyouuseforcommunicationwithdoctorsandothercaregivers?(Multipleresponse)Visitathome/doctor'sofficeTelephoneconversationMailconversationOther(pleaseindicate):{Textbox}PartC-GamificationandGamesCDC1.Howoftendoyouplaydigitalgamesofanykind(e.g.puzzles,leisuregames)?(Multiplechoice)IplaynogamesOnceaweekOnceamonthEverydayCDC2.Ifyouplaydigitalgames,canyoutellusaboutyourexperiences?(Multiplechoice)PositiveexperiencesNegativeexperiencesBarrierstousinggamesNonchalanceexperiencesOther(pleaseindicate):{Textbox}


CAREGIVERSPRO-MMD


CDC3.Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldmotivatemetoparticipate.1-Stronglydisagree2-Disagree3-Neutral4-Agree5-StronglyagreeCDC4.Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldbenefitmore.1-Stronglydisagree2-Disagree3-Neutral4-Agree5-StronglyagreePartD-Semi-StructuredInterview(OpenQuestions)CDD1.Haveyoueverusedanapplicationorawebpageaboutmemorydisorders?Whatwasyourexperience?CDD2.Whatmeansdoyouuseformanagingofyourpeoplelivingwithdementiamedicaldataandtreatmentplan?CDD3.HowtheinternetandICTtechnologiesmightsupportyouormeetyourneedsontreatmentmanagement?CDD4.Whateffectswouldyouexpectfromagamifiedhealthcareapplicationorwebpageonitsusers?(e.g.reduceboredom,maximizeengagementtime,treatmentadherence,etc.)CDD5.Whatothercomputerizedmeansdoyouuseforriskdetectionandconditionsprevention?CDD6.Whatkindofgameswouldyouliketoplayinahealthcareapplication?Forwhatreason?(forskillstraining,leisure,socialization,etc.).CDD7.Whatmeansdoyouuseformanagingthetreatmentofyourpeoplelivingwithdementia?

Caregivers-PlatformQuestionnaire(afterdemonstrationoftheplatform)

PartA–PerceivedUsabilityPleaseindicatehowstronglyyouagreewiththefollowingstatements(1=stronglydisagree;7=stronglyagree)PUA1.Iencounterednoproblemsinlocatingandupdatingmyprofile(myaccount)PUA2.Ifoundlocatingandupdatingmyprofile(myaccount)intuitivePUA3.IpreferadifferentdesignforprofilemanagementPUA4.IencounternoproblemsmanagingdisordersandtreatmentsPUA5.Ifoundmanagingdisordersandtreatmentsintuitive

PUA6.Ipreferadifferentdesignforthemanagementofdisordersandtreatments

PUA7.IencounternoproblemsinsearchingandconnectingwithotheruserprofilesPUA8.Ifoundmanagingconnectionswithotherusersintuitive

PUA9.Ipreferadifferentdesignforsearchingandconnectingwithotherusers


CAREGIVERSPRO-MMD


PUA10.IencounternoproblemsmanagingpostsandwallmessagesPUA11.IfoundmanagingpostsandwallmessagesintuitivePUA12.IpreferadifferentdesignformanagingpostsandwallmessagesPUA13.IencounternoproblemsparticipatinginanonlinequestonnaireaboutadherenceevaluationandreadingthereportPUA14.IfoundparticipatinginanonlinequestionnaireandreadingthereportintuitivePUA15.IpreferadifferentdesignforonlinequestionnairesandreportsPUA16.Iencounternoproblemscommunicatingprivatelywithuserslikepeoplelivingwithdementia,doctors,othercaregivers,helpersandsocialworkers(sendpersonalizedmessage,friendshiprequestorinvitation)PUA17.IfoundprivatecommunicationwithotherusersintuitivePUA18.IpreferadifferentdesignforprivatecommunicationwithothersPUA19.IencounternoproblemsincontactingothercaregiversinthecaféPUA20.Ifoundcontactingothersinthecaféintuitive

PUA21.IpreferadifferentdesignforcontactingotherinthecaféPUA22.Iencounternoproblemsinactivelyparticipatinginthecafé.PUA23.IfoundactionsrelatedtotheCafeintuitivePUA24.IpreferadifferentdesignfortheCafé.PUA25.IcompletedalltasksrelatedtomyroleintheplatformPUA26.IcanusethisplatformonmyownPUA27.Thisapplicationwasuser-friendlyPUA28.Howusefullyouconsidertheplatformtofollowuppeoplelivingwithdementia?PUA29.Howusefuldoyouconsidertheplatformtodelayinstitutionalizationforpeoplelivingwithdementia?PUA30.Didtheplatformrespondatyourexpectations?

PUA31.Wouldyouliketoparticipateinthisplatformasagamecharacter(e.g.participateinagamestory,appearasanavatartoothers,havegoalsdefinedinandoutoftheplatform)?PUA32.Doyouunderstandthenotionofcircleintheplatform?PartB–OpenQuestionsPUB1.Howcouldweimprovethedesign?(Colours,fonts,layouts,etc).PUB2.Pleaseindicatewhichtasks/stepsweremoredifficulttocomplete.PUB3.Whatwereyourexpectationsregardingtheplatform?PUB4.Whatfeatureswouldyouliketoaddinorremovefromthisplatform?PUB5.Whatkindofquestionnairesanddata-collectiontoolsyoumightliketobeincludedintheplatform?(formemory,cognition,anxiety,depression,etc.).PUB6.Howdoyouunderstandwhatisasocialnetworkanditsbenefits?PUB7.Couldyoudescribeinyourownwordswhatisanhealthonlinecommunityanditsbenefits?PUB8.Howsharingyourexperienceswithothersandaskforsupportmakesyoufeel?PUB9.Doyouunderstandthattheresultoftheonlinequestionnaireswillservetoalertdoctorsormembersofmycircleincaseofemergency?Howthatfeaturemakesyoufeel?PUB10.Istreatmentadherenceimportanttoyou?Howawebplatformcouldhelp?


CAREGIVERSPRO-MMD


DoctorsandMedicalProfessionals-Demographicsquestionnaire

PartA-AboutyouDDA1.Firstname{Textbox}DDA2.Surname{Textbox}DDA3.Sex(*atthetimeofbirth)MaleFemaleOther(pleaseindicate):{Textbox}DDA4.Age{Textbox,blockoffanykeystrokethatisnotanumber}DDA5.MotherLanguage(Multiplechoice)EnglishFrenchSpanishItalianOther(pleaseindicate):{Textbox}DDA6.Placeofwork{Textbox}DDA7.Numberofpeoplelivingwithdementiayouareresponsible?(Multiplechoice)lessorequalto2526-5051-100Morethan100DDA8.Context/Placeofhealthcareprofessionalservices(Multiplechoice)DaycareinstituteHomeofpeoplelivingwithdementiaHospital/ClinicCommunitymentalhealthteamOther(pleaseindicate):{Textbox}DDA9.YearsofProfessionalExperience(Multiplechoice)Lessthan5yearsofexperience6-10yearsofexperience11-15yearsofexperience16-20yearsofexperienceMorethan20yearsofexperience

PartB-UseofTechnology/Communicationmeans


CAREGIVERSPRO-MMD


DDB1.ForwhichofthefollowingclinicalactivitiesdoyouusetheInternetfor?(Multiplechoice)OrdonnanceDiagnosticpurposesContactotheirprofessionalsContactpeoplelivingwithdementiaContactcaregiversProfessionalreadingMedicalforumDDB2.Whatothermeansofcommunicationdoyouuseforsocializationwithotherdoctorsandhealthcareprofessionals?(Multipleresponse)PhonecallRegularpostE-mailProfessionalforumSeminarOther(pleaseindicate):{Textbox}DDB3.Whatmeansdoyouuseforcommunicationwithyourpeoplelivingwithdementiaandtheircaregivers?(Multipleresponse)PhonecallRegularpostE-mailProfessionalforumSeminarOther(pleaseindicate):{Textbox}PartC-GamificationandGamesDDC1.Howoftendoyouplaydigitalgamesofanykind(e.g.puzzles,leisuregames)?(Multiplechoice)IplaynogamesOnceaweekOnceamonthEverydayDDC2.Ifyouplaydigitalgames,canyoutellusaboutyourexperiences?(Multiplechoice)PositiveexperiencesNegativeexperiencesBarrierstousinggamesNonchalanceexperiencesOther(pleaseindicate):{Textbox}DDC3.Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldmotivatemypeoplelivingwithdementiaandtheircaregiverstoparticipate.1-Stronglydisagree2-Disagree3-Neutral4-Agree


CAREGIVERSPRO-MMD


5-StronglyagreeDDC4.Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldbenefitmore.1-Stronglydisagree2-Disagree3-Neutral4-Agree5-StronglyagreePartD-Semi-StructuredInterview(OpenQuestions)DDD1.Whatmeansdoyouuseformanagingofyourpeoplelivingwithdementiamedicaldataandtreatmentsuggestions?DDD2.Whatothercomputerizedmeansdoyouuseforriskdetection,diagnosisandprevention?DDD3.Whatmeansdoyouuseforscientificcontributionandaccessingscientificmaterial?DDD4.Doyourecommendanapplicationorawebsiteaboutmemorydisorders?Whichonesandwhy?DDD5.WhatkindofresourcesorservicesdoyouthinkpeoplewithMNDorcaregiversmayfindusefulorbeneficialwhenusingonlinewebsites?DDD6.WhatdesignguidelinesorideaswouldyourecommendtointerfacedesignerstomaketheplatformPLWD-friendlyandtoenhanceusability?Any'musthaves'and/or'mustnots'?DDD7.Inwhatwaycouldanonlinewebsitehelpprofessionalstoimprovethecaretheyprovidetopeoplewithdementiaandtheircarers?(information,socialization,supportandadvice,assessmentofoutcomes,followtherapy,etc.).

DoctorsandMedicalProfessionals-PlatformQuestionnaire(afterdemonstrationoftheplatform)

PartA–PerceivedUsabilityPleaseindicatehowstronglyyouagreewiththefollowingstatements(1=stronglydisagree;7=stronglyagree)DUA1.Iencounterednoproblemsinlocatingandupdatingmyprofile(myaccount)DUA2.Ifoundlocatingandupdatingmyprofile(myaccount)intuitiveDUA3.IpreferadifferentdesignforprofilemanagementDUA4.IencounternoproblemsmanagingdisordersandtreatmentsDUA5.Ifoundmanagingdisordersandtreatmentsintuitive

DUA6.Ipreferadifferentdesignforthemanagementofdisordersandtreatments

DUA7.IencounternoproblemsinsearchingandconnectingwithotheruserprofilesDUA8.Ifoundmanagingconnectionswithotherusersintuitive

DUA9.IpreferadifferentdesignforsearchingandconnectingwithotherusersDUA10.Iencounterednoproblemsduringtheoverviewofthecockpitofpeoplelivingwithdementia?DUA11.Ifoundoverviewingcockpitofthepeoplelivingwithdementiaintuitive.DUA12.Ipreferadifferentdesignforoverviewingofthecockpitofpeoplelivingwithdementia.


CAREGIVERSPRO-MMD


DUA13.IencounternoproblemsmanagingevaluationsDUA14.IfoundmanagingevaluationsintuitiveDUA15.IpreferadifferentdesignformanagingevaluationsDUA16.Iencounternoproblemscommunicatingprivatelywithuserslikepeoplelivingwithdementia,otherdoctors,caregivers,helpersandsocialworkers(sendpersonalizedmessage,friendshiprequestorinvitation)DUA17.IfoundprivatecommunicationwithotherusersintuitiveDUA18.IpreferadifferentdesignforprivateconnumicationwithothersDUA19.IencounternoproblemsincreatinganewcaseDUA20.Ifoundcreatinganewcaseintuitive

DUA21.IpreferadifferentdesignforcreatinganewcaseDUA22.IencounternoproblemsinpostingmynewscientificcontributionDUA23.Ifoundpostinganewscientificcontributionintuitive

DUA24.IpreferadifferentdesignforcreatinganewscientificcontributionDUA25.IcompletedalltasksrelatedtomyroleintheplatformDUA26.Thisapplicationwasuser-friendlyDUA27.Howusefullyouconsidertheplatformtofollowuppeoplelivingwithdementia?DUA28.Howusefuldoyouconsidertheplatformtodelayinstitutionalizationforpeoplelivingwithdementia?DUA29.Didtheplatformrespondatyourexpectations?DUA30.Wouldyouliketoparticipateinthisplatformasagamecharacter(e.g.participateinagamestory,appearasanavatartoothers,havegoalsdefinedinandoutoftheplatform)?

PartB–OpenQuestionsDUB1.Enumerateparametersandinformationthatyouwouldliketoseewhenyourealizeamedicalcontrolwithyourpeoplelivingwithdementiaevery6monthDUB2.Pleasesayhowwecouldimprovethedesign(ifdifferentforeachplease,indicateseparately).DUB3.Pleaseindicatewhichtasks/stepsweremoredifficulttocomplete.DUB4.Whatwereyourexpectationsregardingtheplatform?DUB5.Whatfeatureswouldyouliketoaddinorremovefromthisplatform?DUB6.Doyouconsidertheplatformcanimprovetreatmentadherencefocusonsymptomsrelatedtothedisease?How?DUB7.DoyouconsidertheplatformcanimprovecontrolofthepeoplelivingwithdementiaandpreventotherdiseaseswithPLWDandcaregivers?DUB8.Whatkindofquestionnairesanddata-collectiontoolsyoumightliketobeincludedintheplatform?(formemory,cognition,anxiety,depression,etc.).DUB9.Istreatmentadherenceimportanttoyourpeoplelivingwithdementia?Howawebplatformcouldhelp?

Helpers-Demographicsquestionnaire

PartA-AboutyouHDA1.Firstname{Textbox}


CAREGIVERSPRO-MMD


HDA2.Surname{Textbox}HDA3.Sex(*atthetimeofbirth)MaleFemaleOther(pleaseindicate):{Textbox}HDA4.Age{Textbox,blockoffanykeystrokethatisnotanumber}HDA5.MotherLanguage(Multiplechoice)EnglishFrenchSpanishItalianOther(pleaseindicate):{Textbox}HDA6.LevelofEducation(accordingtoISCED2011,Multiplechoice)0-Earlychildhoodeducation1-Primaryeducation2-Lowersecondaryeducation3-Uppersecondaryeducation4-Post-secondarynon-tertiaryeducation5-Short-cycletertiaryeducation6-Bachelor’sorequivalentlevel7-Master’sorequivalentlevel8-Doctoralorequivalentlevel9-NotelsewhereclassifiedHDA7.Whatisyourrelationshipwithyourpeoplelivingwithdementia?(Multiplechoice)SpouceChildrenGrandchildParentBrother/SisterFriendNeighborOther(pleaseindicate):{Textbox}HDA8.HowmanyPLWDreceivehelpfromyou?{Textbox,blockoffanykeystrokethatisnotanumber}HDA9.Context/Placeofhealthcareprofessionalservices(Multiplechoice)DaycareinstituteHomeofpeoplelivingwithdementiaHospital/ClinicCommunitymentalhealthteamOther(pleaseindicate):{Textbox}HDA10.Howmanyyearsyouprovidehelptopeoplelivingwithdementia?(Multiplechoice)


CAREGIVERSPRO-MMD


Lessthan5years6-10years11-15years16-20yearsMorethan20years

PartB-UseofTechnology/CommunicationmeansHDB1.WhatdoyouusetheInternetfor?(Multipleresponse)Communication(email,videochat,etc.)OnlineShopping/SellingOnlineEntertainment(video/movies,games,music,etc.)NewsReadingWorkSocialNetworksSharinginformation(blogging,photosharing,etc.)Education/TrainingLookingformedicaladviceIdonotusetheInternetOther(pleaseindicate):{Textbox}HDB2.Whichkindofdevicesyouprefer/feelmoreconfidenttouse?(Multipleresponse)PersonalComputer(PC)Tablet/iPadLaptopSmartphone(Android/iPhone)Other(pleaseindicate):{Textbox}HDB3.Whatmeansdoyouuseforcommunicationwithdoctorsandothercaregivers?(Multipleresponse)Visitathome/doctor'sofficeTelephoneconversationMailconversationOther(pleaseindicate):{Textbox}PartC-GamificationandGamesHDC1.Howoftendoyouplaydigitalgamesofanykind(e.g.puzzles,leisuregames)?(Multiplechoice)IplaynogamesOnceaweekOnceamonthEverydayHDC2.Ifyouplaydigitalgames,canyoutellusaboutyourexperiences?(Multiplechoice)PositiveexperiencesNegativeexperiencesBarrierstousinggamesNonchalanceexperiencesOther(pleaseindicate):{Textbox}


CAREGIVERSPRO-MMD


HDC3.Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldmotivatemetoparticipate.1-Stronglydisagree2-Disagree3-Neutral4-Agree5-StronglyagreeHDC4.Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldbenefitmore.1-Stronglydisagree2-Disagree3-Neutral4-Agree5-StronglyagreePartD-Semi-StructuredInterview(OpenQuestions)HDD1.Haveyoueverusedanapplicationorawebpageaboutmemorydisorders?Whatwasyourexperience?HDD2.Whatmeansdoyouuseformanagingofyourpeoplelivingwithdementiamedicaldataandtreatmentplan?HDD3.HowtheinternetandICTtechnologiesmightsupportyouormeetyourneedsontreatmentmanagement?HDD4.Whateffectswouldyouexpectfromagamifiedhealthcareapplicationorwebpageonitsusers?(e.g.reduceboredom,maximizeengagementtime,treatmentadherence,etc.)HDD5.Whatothercomputerizedmeansdoyouuseforriskdetectionandconditionsprevention?HDD6.Whatkindofgameswouldyouliketoplayinahealthcareapplication?Forwhatreason?(forskillstraining,leisure,socialization,etc.).HDD7.HowwouldyouliketofollowprogressmadebyyourpeoplelivingwithdementiaandgetinformedfortheactivityofusersrelatedtoyourPLWD?HDD8.Whatmeansdoyouuseformanagingthetreatmentofyourpeoplelivingwithdementia?

Helpers-PlatformQuestionnaire(afterdemonstrationoftheplatform)

PartA–PerceivedUsabilityPleaseindicatehowstronglyyouagreewiththefollowingstatements(1=stronglydisagree;7=stronglyagree)HUA1.Iencounterednoproblemsinlocatingandupdatingmyprofile(myaccount)HUA2.Ifoundlocatingandupdatingmyprofile(myaccount)intuitiveHUA3.IpreferadifferentdesignforprofilemanagementHUA4.IencounternoproblemsmanagingdisordersandtreatmentsHUA5.Ifoundmanagingdisordersandtreatmentsintuitive

HUA6.Ipreferadifferentdesignforthemanagementofdisordersandtreatments

HUA7.Iencounternoproblemsinsearchingandconnectingwithotherusers


CAREGIVERSPRO-MMD


HUA8.Ifoundmanagingconnectionswithotherusersintuitive

HUA9.IpreferadifferentdesignforsearchingandconnectingwithotherusersHUA10.IencounternoproblemsmanagingpostsandwallmessagesHUA11.IfoundmanagingpostsandwallmessagesintuitiveHUA12.IpreferadifferentdesignformanagingpostsandwallmessagesHUA13.Iencounternoproblemscommunicatingprivatelywithuserslikepeoplelivingwithdementia,doctors,caregivers,otherhelpersandsocialworkers(sendpersonalizedmessage,friendshiprequestorinvitation)HUA14.IfoundprivatecommunicationwithotherusersintuitiveHUA15.IpreferadifferentdesignforprivatecommunicationwithothersHUA16.IencounternoproblemsinmanagingcirclesHUA17.IfoundmanagementofcirclesIparticipateintuitive

HUA18.IpreferadifferentdesignformanagementofcirclesIparticipateinHUA19.Howusefulyouconsidertheplatformtofollowuppeoplelivingwithdementia?HUA20.IcompletedalltasksrelatedtomyroleintheplatformHUA21.Thisapplicationwasuser-friendlyHUA22.Howusefulyouconsidertheplatformtofollowuppeoplelivingwithdementia?HUA23.Didtheplatformrespondatyourexpectations?HUA24.Wouldyouliketoparticipateinthisplatformasagamecharacter(e.g.participateinagamestory,appearasanavatartoothers,havegoalsdefinedinandoutoftheplatform)?

PartB–OpenQuestionsHUB1.Howcouldweimprovethedesign?(Colours,fonts,layouts,etc).HUB2.Pleaseindicatewhichtasks/stepsweremoredifficulttocomplete.HUB3.Whatwereyourexpectationsregardingtheplatform?HUB4.Whatfeatureswouldyouliketoaddinorremovefromthisplatform?HUB5.Whatkindofquestionnairesanddata-collectiontoolsyoumightliketobeincludedintheplatform?(formemory,cognition,anxiety,depression,etc.).HUB6.Istreatmentadherenceimportanttoyourpeoplelivingwithdementia?Howawebplatformcouldhelp?

SocialWorkers-Demographicsquestionnaire

PartA-AboutyouHDA1.Firstname{Textbox}HDA2.Surname{Textbox}HDA3.Sex(*atthetimeofbirth)MaleFemaleOther(pleaseindicate):{Textbox}HDA4.Age{Textbox,blockoffanykeystrokethatisnotanumber}


CAREGIVERSPRO-MMD


HDA5.MotherLanguage(Multiplechoice)EnglishFrenchSpanishItalianOther(pleaseindicate):{Textbox}HDA6.Howmanypeoplelivingwithdementiareceiveservicesfromyou?(InputNumberinTextbox){Textbox,blockoffanykeystrokethatisnotanumber}HDA7.Yearsofexperienceasasocialworker(Multiplechoice)Lessthan5yearsofexperience6-10yearsofexperience11-15yearsofexperience16-20yearsofexperienceMorethan20yearsofexperienceHDA8.Numberofpeoplelivingwithdementiayoufollow(Multiplechoice)lessorequalto2526-5051-100Morethan100HDA9.Context/Placeofprofesionalservicesoffering(Multipleresponse)DaycareinstituteHomeofpeoplelivingwithdementiaHospital/ClinicOther(pleaseindicate):{Textbox}

PartB-UseofTechnology/CommunicationmeansHDB1.Whatmeansdoyouuseforcommunicationwithpeoplelivingwithdementia,theirfamilies,doctorsandtheircaregivers?(Multipleresponse)Visitathome/doctor'sofficeTelephoneconversationMailconversationOther(pleaseindicate):{Textbox}HDB2.Whatmeansdoyouuseforcommunicationwithothersocialworkers?(Multipleresponse)Forums/WorkshopsTelephoneconversationMailconversationBlogsSocalnetworksOther(pleaseindicate):{Textbox}PartC-GamificationandGamesHDC1.Howoftendoyouplaydigitalgamesofanykind(e.g.puzzles,leisuregames)?(Multiplechoice)


CAREGIVERSPRO-MMD


IplaynogamesOnceaweekOnceamonthEverydayHDC2.Ifyouplaydigitalgames,canyoutellusaboutyourexperiences?(Multiplechoice)PositiveexperiencesNegativeexperiencesBarrierstousinggamesNonchalanceexperiencesOther(pleaseindicate):{Textbox}HDC3.Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldmotivatemypeoplelivingwithdementiaandtheircaregiverstoparticipate.1-Stronglydisagree2-Disagree3-Neutral4-Agree5-StronglyagreeHDC4.Ibelievethatagame-likeexperiencefromanapplicationorawebpagewouldbenefitmore.1-Stronglydisagree2-Disagree3-Neutral4-Agree5-StronglyagreePartD-Semi-StructuredInterview(OpenQuestions)HDD1.Haveyoueverusedanapplicationorawebpageaboutmemorydisorders?Whatwasyourexperience?HDD2.Whatmeansdoyouuseforupdatingsocialinformationofthepeoplelivingwithdementiayoufollow?HDD3.HowtheinternetandICTtechnologiesmightsupportyouormeetyourneedsontreatmentmanagement?HDD4.Whateffectswouldyouexpectfromagamifiedhealthcareapplicationorwebpageonitsusers?(e.g.reduceboredom,maximizeengagementtime,treatmentadherence,etc.)HDD5.Whatothercomputerizedmeansdoyouuseforriskdetectionandconditionsprevention?HDD6.Whatkindofgameswouldyouliketoplayinahealthcareapplication?Forwhatreason?(forskillstraining,leisure,socialization,etc.).

SocialWorkers-PlatformQuestionnaire(afterdemonstrationoftheplatform)

PartA–PerceivedUsabilityPleaseindicatehowstronglyyouagreewiththefollowingstatements(1=stronglydisagree;7=stronglyagree)HUA1.Iencounterednoproblemsinlocatingandupdatingmyprofile(myaccount)


CAREGIVERSPRO-MMD


HUA2.Ifoundlocatingandupdatingmyprofile(myaccount)intuitiveHUA3.IpreferadifferentdesignforprofilemanagementHUA4.Iencounterednoproblemsduringtheoverviewofthecockpitofpeoplelivingwithdementia.HUA5.Ifoundoverviewingthecockpitofthepeoplelivingwithdementiaintuitive.HUA6.Ipreferadifferentdesignforoverviewingofthecockpitofpeoplelivingwithdementia.HUA7.IencounternoproblemsmanagingpostsandwallmessagesHUA8.IfoundmanagingpostsandwallmessagesintuitiveHUA9.IpreferadifferentdesignformanagingpostsandwallmessagesHUA10.Iencounternoproblemscommunicatingprivatelywithuserslikepeoplelivingwithdementia,doctors,othercaregivers,helpersandsocialworkers(sendpersonalizedmessage,friendshiprequestorinvitation)HUA11.IfoundprivatecommunicationwithotherusersintuitiveHUA12.IpreferadifferentdesignforprivatecommunicationwithothersHUA13.Iencounternoproblemsinupdatingsocialinformationofpeoplelivingwithdementia.HUA14.Ifoundupdatingsocialinformationofpeoplelivingwithdementiaintuitive.HUA15.Ipreferadifferentdesignforupdatingsocialinformationofpeoplelivingwithdementia.HUA16.IcompletedalltasksrelatedtomyroleintheplatformHUA17.Thisapplicationwasuser-friendlyHUA18.Howusefulyouconsidertheplatformtofollowthesocialstatusofpeoplelivingwithdementia?

HUA19.Didtheplatformrespondatyourexpectations?

HUA20.Wouldyouliketoparticipateinthisplatformasagamecharacter(e.g.participateinagamestory,appearasanavatartoothers,havegoalsdefinedinandoutoftheplatform)?

HUA21.Howcouldweimprovethedesign?(Colours,fonts,layouts,etc).HUA22.Pleaseindicatewhichtasks/stepsweremoredifficulttocomplete.HUA23.Whatwereyourexpectationsregardingtheplatform?

HUA24.Whatfeatureswouldyouliketoaddinorremovefromthisplatform?

HUA25.Whatkindofquestionnairesanddata-collectiontoolsforscreeningofsocialstatusyoumightliketobeincludedintheplatform?

pact analysis and focus group reports · 0.2 18-07-2016 draft ioannis paliokas, votis konstandinos...

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