CAREGIVERSPRO-MMD PROJECT · MMD platform in terms of usability and accessibility. Identifying the...

<D1.1AccessibilityReport>CAREGIVERSPRO-MMD

<D1.1AccessibilityReport>:Page1of64

DeliverableNumber:D.1.1,version:1

AccessibilityReport

CAREGIVERSPRO-MMDPROJECT

Ref. Ares(2016)3135312 - 30/06/2016



Documentinformation

ProjectNumber 690211 Acronym CAREGIVERSPRO-MMD

Fulltitle Self-managementinterventionsandmutualassistancecommunityservices,helpingpatientswithdementiaandcaregiversconnectwithothersforevaluation,supportandinspirationtoimprovethecareexperience

Projectcoordinator UniversitatPolitècnicadeCatalunya-BarcelonaTechProf.UlisesCortés,[email protected]

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

Deliverable Number D1.1 Title AccessibilityReport

Workpackage Number 1 Title ScreeningandInterventioncontents

Dateofdelivery Contractual M6 Actual M6

Nature ReportþDemonstratorpOtherp

DisseminationLevel PublicþConsortiump

Keywords Accessibility,Usability,User-CentredDesign,Dementia

Authors(Partner) AntomariniMarco(COO),CesaroniFrancesca(COO),PetroneMariangela(COO),ScoccheraFrancesca(COO)

ResponsibleAuthor Scocchera,Francesca Email [email protected]

Partner COOSS Phone +39071501031



DocumentVersionHistory

Version Date Status Author Description

0.1 09-05-2016 Draft COOSS Accessibilityreport–firstProposal

0.2 01-06-2016 Draft COOSS Partners’contributionsintegrated

0.3 10-06-2016 Draft COOSS Internalrevision

0.4 13-06-2016 Draft COOSS FinalDraftforPartners’validation

1.0 29-06-2016 Final COOSS Finalversionwithannexes



ExecutivesummaryThisdeliverableisintendedtoproviderecommendationsforimprovingtheCAREGIVERSPRO-MMDplatformintermsofusabilityandaccessibility. Identifyingtheusers’characteristicsandcapabilities,aswellasthethingstheywanttodowiththeplatform,willallowtotunethe CAREGIVERSPRO-MMD technical specifications to their needs, thus ensuring bothfunctionalityandusability.

D1.1 is themainoutputofT1.1 “Relevant conditions forusability”,a33months iterativeprocesswhichwillbenefitfromotherWPsresultsforitscompletion.Atthisinitialstageofdevelopment, D1.1 presents some preliminary accessibility features derived from thepartners’expertiseandanextensiveliteraturereview.

Dataandinformationhavebeengatheredthroughaseriesofconsequentialstepsconsistingof:

• Identificationofcharacteristics(age,culture,educationallevel...)andconditions(clinical,psychologicalandbehaviouralsymptoms)whichcanaffecttheusers’capabilitiestousetheCAREGIVERSPRO-MMDplatform;

• AnalysisoftheexpectedimpactoftheseconditionsontheuseofCAREGIVERSPRO-MMD;• List of the suggestions and adaptionmeasures to improve the platformusability and

accessibility.

Meaningful usability features have emerged from the “Treatment Adherence Review”,resultingfromT2.3,whichisannexedtoD1.1initsfullversion.

Thelistoffeaturestoimproveaccessibilitywillbeupdatedtoreflectfeedbackfromfocusgroups (WP2-Platform enhancement and Design adaptation), from the progresses in theplatform adaptation (WP3 - IT development and integration) and from the users’ testing(WP5-PilotsOperation).



ListofAcronyms

Acronym Title

UA UserAnalysis

AA ActivityAnalysis

AUI AdaptiveUserInterfaces

BITV Barrierefreie-Informationstechnik-VerordnungTest

CSS CascadingStyleSheets

CTIC CentrefortheDevelopmentofICTinAsturias,ES

EARL EvaluationAndReportLanguageOverview

ICT InformationandCommunicationTechnologies

PACT People,Activities,Context,Technologiesanalysis

PLWD PeopleLivingwithDementia

QoL QualityofLife

SMIL SynchronizedMultimediaIntegrationLanguage

TAW3 TestoAccesibilidadWeb

UNCRPD UNConventionontheRightsofPersonswithDisabilities

WaaT WebaccessibilityassessmentTool

WAI-ARIA WebAccessibilityInitiative-AccessibleRichInternetApplications

W3C TheWorldWideWebConsortium

WCAG WebContentAccessibilityGuidelines



ListofTables

No. Title

Table1 UsersCharacteristicsAnalysis(UA)

Table2 PlatformActivitiesAnalysis(AA)



Tableofcontents

EXECUTIVESUMMARY 4

LISTOFACRONYMS 5

LISTOFTABLES 6

1 INTRODUCTIONTOUSABILITY 8

2 “DESIGNFORALL”VS.“USERSENSITIVEINCLUSIVEDESIGN”INWEBDEVELOPMENT 9

3 ADAPTIVEINTERFACESFORPLWD 10

4 USERANALYSIS 11

5 ACTIVITIESANALYSIS 13

6 USABILITYSTUDYRESULTS 156.1 USERANALYSIS(UA)-DESIREDPRODUCTCHARACTERISTICS 156.2 ACTIVITYANALYSIS(AA)-DESIREDPRODUCTCHARACTERISTICS 17

7 OTHERDESIGNCONSIDERATIONS 20

8 WEBACCESSIBILITYSTANDARDSANDAUTOMATICCONFORMANCEASSESSMENT 228.1 SOFTWARETOOLSFORAUTOMATICWEBACCESSIBILITYASSESSMENT 22

9 TOBECONSIDERED 24

10APPENDICES 2510.1 USERANALYSIS(UA) 2510.2 ACTIVITYANALYSIS(AA) 3010.3 TREATMENTADHERENCEREVIEW 33

10.3.1 THEPATIENTWITHALZHEIMER 3310.3.2 THECAREGIVER 3710.3.3 ADHERENCETOTREATMENT 3710.3.4 CONCLUSIONS 4710.3.5 REFERENCESOFANNEX3 50

10.4 GLOSSARY 5910.5 REFERENCES 62



1 IntroductiontoUsabilityWhendevelopingan ICT(InformationandCommunicationTechnology)basedproductsorservices,theirdesignshouldbedrivenfromuserrequirementsandcapabilitiesratherthanfromtechnologicallogics,toensurethattheyhaverealvalueforendusers,arematchedtousers’skillsandfitforthepurposetheyweredesignedfor.Thechallengeistoensurethattheproductwillcontributetothequalityoflifeandindependentlivingofitsintendedusers.

This approach goes under the name of usability, which comes from the field of HumanFactors(orErgonomics)aimedatputtingahumanbeingatthecentreofdesign,ratherthantechnologyorproducts.Auser-centreddesignshould:

• identifytheusersthatneedthatproduct/service;

• identifythecharacteristicsthattheproduct/servicemusthaveinordertomeettheneedsoftheseusers;

• involvetheusersinthedesignprocess;

• considereffectiveness,efficiencyandsafetycriteria[33].

Whenpeople’sneedsandcapabilitiesareconsideredforthedesignandimplementationofaproduct/service,therearemanybenefitsintermsofeffectiveness,efficiencyandsafety,whichcanbeeasilymeasuredanddemonstratedthroughquantitativeindicators.Importantbenefitsare:easeofuse,satisfactionandcommitment, i.e.usabilityaspectstargetingtheusers’subjectivearea,whichcanbedifficulttomeasure.Feedbackontheproduct/serviceusabilityandaccessibility isakey factor indetermining their likely successor failure,andtailoredtechniquesshouldbeusedtogatherinformationontheusersatisfactionandtosetusabilitygoalsagainstwhichtheproduct/servicemaybeevaluated.

A user-centred approach also contributes to significantly reduce accessibility problems,developmentcosts,aswellastheneedforredesignandrecall.Onthecontrary,whenhumanaspectsarenot considered, thisoften leads to thedevelopmentof inaccessibleandnon-ergonomicproducts/services.Thelackofaccessibilityandergonomicsputsgreatbarriersinthedailylifeofpeoplewithspecificneedsandevenexcludesthemfrommanyactivities.

ThisdeliverableisintendedtoproviderecommendationstoguaranteetheCAREGIVERSPRO-MMDplatformusabilityandaccessibility.Itwillevaluatetheusers’profileandmatchtheircharacteristics and capabilities to the existing technical CAREGIVERSPRO-MMD platformspecifications,withtheaimtoensurehigh-levelfunctionalityandusability.



2 “DesignforAll”vs.“UserSensitiveInclusiveDesign”inwebdevelopmentICThaveprofoundlychangedpeople’slives.Softwaredevelopmentproductshaveshowntosupport and improve people’s daily activities and raise their standard of living. TheWebprovides a unique opportunity for people with disabilities to communicate, participate,interact and benefit from it. Accessibility and ease of use for peoplewith special needs,including physical or functional limitations, visual deficiencies, cognitive and learningdisabilitieshasattractedalotofattentionduringthelastfewyears.Anincreasingnumberofgovernmentsarelegislatingtowardspromotingandenforcingequalityofopportunityandofaccessforeveryonewithintheeconomyandsociety(Inclusion)[14],alsointermsofaccesstoICTandtheevolvingInformationSociety(eAccessibility)[13].Accesstoinformationontheweb has been also recognized as a human right by the UN Convention on the Rights ofPersonswithDisabilities (UNCRPD) [43].However,developedproductsandservicesoftenlackaccessibility.Althoughwell-definedstandardsexistaidingthedevelopmentofaccessibleproducts,developersareoftennotadequatelyawareofthedeficienciesandtheboundariesthatpeoplewithdisabilitiesfacewhileusingasoftwareapplication.

The“Design forAll”principle requires researchersanddesigners toconsiderallpotentialusergroupsofsystems,includingtheelderlyanddisabled.However,the“designforall”isaverydifficulttask,ingeneral.Webpagesthatcomplywithgeneralaccessibilityguidelinesetsmay still fail to be accessible for some users. Lack of context, information overload andexcessive sequencingwhen reading the information are some commonproblems for thevisuallyimpairedusers[45].Providingaccesstopeoplewithcertaintypesofdisabilitymaymaketheproductsignificantlymoredifficulttousebypeoplewithoutdisabilitiesorpeoplewithadifferenttypeofdisability[26].Moreover,therearecaseswherethe“DesignforAll”cannotbeappliedduetothespecialnatureofaproduct/service(e.g.theinclusionofblindpeopleindriving).Thus,newmethodologiesappeared,inordertoenforcetheinclusionofspecificuser’sneedsandpreferencesinthedesignprocess,namely“UserSensitiveInclusiveDesign” [27].According to theprinciplesof“UserSensitive InclusiveDesign”,“inclusivity”such as focusing on a specific target group of users, is a more achievable, and inmanysituations,moreappropriategoalthan“universaldesign”or“designforall”.Thisisbecausetherangeoffunctionalityandcharacteristicsoftheusergroupsinmanycasescanbesogreatthatitisimpossibleinanymeaningfulwaytoproduceasmallrepresentativesampleoftheusergroup,noroftentodesignaproductthatistrulyaccessiblebyallpotentialusers.Someresearch findings [45] claim that personal accessibility evaluations of web pages oftenimprovethewebexperienceofdisabledusersandimprovesthewholewebsitedevelopmentprocess. They also report that web developers may define or retrieve user profiles andevaluatetheirdesignsagainstthem,whendevelopingwebsitesforspecificaudiences.Userprofiles allow users’ disabilities and functional limitations to be considered through thedesignanddevelopmentprocess.



TheCAREGIVERSPRO-MMDplatformwillbedesignedanddevelopedonthe“UserSensitiveInclusiveDesign”approach, towardsaddressingthespecificneedsandpreferencesof theend-users.Morespecifically,theinterfaceoftheCAREGIVERSPRO-MMDwillbeadaptabletothe needs and preferences of the direct end-users, which in our case are PLWD, theircaregiversandthehealthprofessionals.Atthisstageofdevelopment,theusabilitystudyhasfocused on the functional implications that given characteristics and symptoms candetermineonusabilityandaccessibilityissues.Specificneedsforeachtargetgroupswillbeidentifiedduringtheprojectprogress,withcontributionsfromWP2,WP3andWP5.

3 AdaptiveinterfacesforPLWDAdaptiveUserInterfaces(AUI)havebeenwidelyrecognizedasapromisingmeanstowardsaccessibletechnology[16],[34],[37],[49].Identifyingindividualandsituationaluserneedsandprovidingdynamicallypersonalizeduserinterfacescanovercomesignificantbarriersofuse.Peoplewithcognitivedisabilitiescanbenefitfrominformationandcontentpresentedinawaytheyarefamiliarandcomfortablewith.

A major challenge for adaptive web interfaces is the development of user profiles thatconsistsofeachuser’scognitiveandphysicalabilities.Currently, someresearchhasbeenconductedtowardsthedefinitionofusermodels/profilesdescribingusercharacteristicsindetail,includingalsocognitiveparameters.AnindicativeexampleistheVERITASVirtualUserModel[21],whichdescribesalargesetofphysical,cognitiveandbehaviouralcharacteristicsofaperson, includingpossibledisabilities,functional limitations,theaffected/problematic(duetothedisabilities)tasksaswellaspossibleuseofassistivedevices.However,thereisnostandardizeddefinitionofausermodel/profileyet,sodevelopersofadaptiveuserinterfacesusedifferentprofilesfortheirsystems.Theadaptionoftheactualuserinterfacebasedontheuserprofileisalsostillchallenging.Adaptingtheuserinterfacefordifferentuserneedsinanautomatedwayisstillbeingresearched.Whenadaptingtheinterfacetouser’sneedsandcharacteristics, it is importanttoadjustthisinterfaceit inawaythatit looksgoodondifferentdeviceswithdifferentresolutionsandinteractionparadigmsandinawaythatitisoptimizedfor the individualuser.Another issue is theconversionofcontent intoanotherformatlikeEasyToRead[12]orsymbollanguage.Althoughsomeresearchisbeingmadeinthatdirection,noautomatedsolutionhasemergedso far.For this reason,aspecificuserprofileshouldbecreatedforeachproduct.



4 UserAnalysisUserneedsareacentralfactorinausabilitystudy,meaningthatarelevantmatchbetweenthephysicalandcognitiveabilitiesoftheuserandtherequirementsforusingtheplatformshouldexist.There isno such thingasanaverageuser: age, gender, cultural andethnicdifferences,cognitiveandsensoryabilities,mobilityproblemsmakeusersdifferentintheirneedsandexpectations.

A principal concern of usability is placing the potential users at the centre of the designprocess.Thisinvolvesidentifyingwhothepotentialusersareandthecharacteristicsofthesetypical users. In CAREGIVERSPRO-MMD project, the direct end users are PLWD, theirformal/informal caregivers and healthcare professionals. Once the users groups areidentified,theircharacteristicsandattributeshavetobeanalysed,astheywillaffecttheirability to use the platform. Identifying characteristics such as “memory loss” determinesdesign parameters that must be considered for these users. In other words, the users’characteristics contribute to the functional requirements for the development of theplatform.

TheUserAnalysis(UA)[33]isasimpletool,whichactsasarepositoryofdesigninformationaboutusercharacteristics,andsummarizestheimplicationsthatthesemayhavefordesign(Table1).

Column1(Characteristics)listsallthecharacteristicsoftheintendedusers,bothintermsofpersonaldetailsandclinicalsymptoms.ThelistofsymptomsisderivedfromD1.2.

Column2(Functionalimplications)providessomesuggestionsinordertomaketheplatformaccessible to users with specific characteristics/symptoms. Functional implications areidentified,andpossiblesolutionsforuser’sdifficultiestousetheplatformaresought.Theycancoverawidevarietyofissuesandbedevelopedfromliteratureanalysisorfromsurveysinvolvingthedirectusers.

Column 3 (Desired Product Characteristics) reports any practical ideas and suggestedfeaturestosatisfytheuserneedswhendesigningtheplatform.

Tab.1providesanexampleofwhatthetableshouldresult like,oncefilled in. Ithastobeconsidered that not all the characteristics and symptoms will give rise to functionalimplications,andthatdifferentsymptomscanoriginatethesamedesiredcharacteristics.



Table1–UserCharacteristicsAnalysis(UA)

TocompletethetoolfromUAabove,theneedsandcharacteristicsofdirectusers,includingPLWD and caregivers, healthcare professionals and technical staff, need to be identified.Methods such as interviews, focus groups and demonstrationswill help to gather usefulfeedback from the above-mentioneduser groups, and guarantee the complianceof theirneedswiththeplatform’sfunctionalspecifications.D.1.1willthereforebeupdatedastheproject progresses, benefitting from the PACT analysis results (WP2) and end users’experience(WP5).

TheDesiredProductCharacteristics identified inColumn3will indicatetheusabilitygoalsagainstwhichtheplatformwillbeevaluated.

Appendix1reportsthefirstusabilityindications,derivedfromapreliminaryscientificliteraturereviewandfromthepartners’contributions.

Characteristics FunctionalImplications DesiredproductcharacteristicsPersonalcharacteristicsAge>65 Simplicityofdesignneeded

Self-descriptiveinterfaces,withallthepossibleactionsincluded.

Attractiveandinteractiveplatform

Appropriategraphicstoenhanceunderstanding[19]

Gender: Malesinteractforlongerperiodswithtouchscreensthanfemales[44]

Culturalstatus:

Plainandeasyinformation,keysandmessages

Labelingkeybuttonswithsignsandnonverbalsymbols

MotivationinusingICTprobablylow

Simpletooperateandattractive Usegamificationtopromoteengagement

ExperienceinusingICT Probablylow:simpletooperate,intuitiveorwithcontinuoussuggestionsonhowtogoon

Avoidjargonandtechnicallanguage

Cognitive–clinicalsymptomsAgnosia

Presentmaterialsinmultiplemodescanhelpincreasingcomprehension[19,18,40]

Useaudiopromptstosignalanychangeofstate[19,40]

…… Behavioural-PsychologicalsymptomsinPatientsAnosognosia Topayingattentiontovocabularyused.Use

medicalterms(dementia,Alzheimerdisease,…)forscientificcontributionorcaregiver'sexchange.Positivenotstigmatizingwords

…… ActivitiesofDailyLivinginPeopleLivingwithDementiaandcaregivers……. ……



5 ActivitiesAnalysisUsers’requirementshavetoberelatedtothetasksthattheplatformisfacilitatingorisaimedto.Matchingtheplatformtasksandfunctionalitiestotheusercapabilitiesandlimitationsisakeypointtoensureitsusabilityandacceptability:iftheplatformisnotperceivedbytheusersassatisfyingsomeusefulpurposes,ifitdoesn’tenablethemtoachievetheirgoalsoriftheydonotobtainanybenefitfromitsuse, itmeansthat itsusability is low.Assuch,thefunctionalityoftheCAREGIVERSPRO-MMDplatformmaybeassessedagainstthedefinitionofwhattheusercandowithit.Thisperspectivefocusesontheneedsoftheusergroupsandisdrivenbytheircharacteristics,ratherthanbyconsiderationsofwhatmightbetechnicallyfeasible.

TheActivityAnalysis(AA)[33]isasimpletoolallowingtodescribetheactivitiesortasksthateachuserwillneedtoperformwhenusingtheCAREGIVERSPRO-MMDplatform(Table2).SimilartotheUserAnalysis,ActivityAnalysistoolfacilitatestheidentificationofsomedesiredproductcharacteristicsthatwillguidedeveloperstoimprovetheplatform’sdesign.

Column1(ActivitiesinScenario)liststheCAREGIVERSPRO-MMDplatform’sfunctions,eitherasahighleveloverviewordetailedinlowerlevelactivitiesthatcontributetotheoveralltaskperformance. The high level scenarios correspond to the 6 main services of theCAREGIVERSOPRO-MMDplatform.Services,functionsandcontentswillbeaddedoncetheupcomingusabilitystudiesarecompleted.

Column2(FunctionalImplications)providessuggestionsinordertomakethetasksaccessibletouserswithspecificcharacteristics/symptoms.Atthisstageoftheanalysis,thefocusisonthedifficultiesusersmay face in theperformanceof theproposedtasks,andon thewaythesedifficultiesmaybepracticallysolved.

Column 3 (Desired Product Characteristics) translates the suggestions in technicalspecifications,whichwillguidetoredesigntheplatform.Itdocumentsanypracticalideasforthedesignof theproductandprovidessuggestions tomaketheplatformsatisfy theuserneeds.



Activitiesinscenario Functionalimplications DesiredproductcharacteristicsLogintotheplatform Makeitsimpleandnotconfusing

AvoidEnglishtechnicalterms(pw,id,account…)

Privacyissues:clarifyprivacyissuesanddataprotectionmethodsinsimpleandaccessibleform

Avoidthattermsandconditionsaresmallandillegiblefortheuser.

Selectservicesfromthehomepage

Limitthenumberoffunctionsandmakethemwellvisibleandrecognizable

LukeWroblewskiguidelinesfordifferentplatform

SocialNetworkservice:Buildpatients’community

Makethecommunitieseasytocreate,selectanduse

Clarifythedifferencesfor“circle”,“contacts”,“friends”…

Clinical,psychologicalandbehavioralscreeningservice:Assesspatients’treatmentadherencelevel

Clarifytheneedtosavedata,ifitisthecaseSimpleandshortformatforthescales,supportedbyvisualandaudioaidsfortheircompletion

Big“save”button?Audio-visualreminderthatdatahavetobesaved?

Therapeuticeducationservice:Provideinformationtotheusersaboutdementia,symptoms,psychiatriccomorbidity

CaptionedvideosDifferentcontentsdependingonthedyadmember

Interventionsfollowingguidelinesin3.1

Treatmentadherenceservice:Identifythetreatmentadherencelevel

Provideonesimpleandshortscale

Improvetreatmentcompliance

Includeadvisesforcaregivers(verifydrugboxes,prescriptionrenewal…)

Gamificationservice:Underconstruction ………

Clinicalandsocialreportservice:Sharedatawithdoctors/others;

Makethedatasharingautomaticasfaraspossible,thusavoidingusers’operationsinthissense

………

Table2–PlatformActivitiesAnalysis(AA)

SimilartoUA,thecompletionoftheproposedAAtoolrequirestheinvolvementofthedirectusers(PLWDandcaregivers),healthprofessionalsandtechnicalstafftogatherspecificneedsandconditions requiringcustomizeddesign.Namely, the roleandrequirementsofhealthprofessionalswillbetakenintoaccountintermsofproductivityorcontext,becauseoftheircrucial role. Interviews, focus groups and demonstrations will help to gather relevantfeedbackfromtheusergroupsandincreasethecomplianceoftheirneedswiththeplatformtasks.TheAAformwillbeupdatedwithinformationanddataderivedfromthePACTanalysis(WP2)andtheusers’directexperience(WP5).

Thedesiredproductcharacteristics identifiedinColumn3willbeusedtosettheusabilitygoalsagainstwhichtheplatformwillbeevaluated.

Appendix2reportssomepreliminaryactivityanalysisindications.



6 UsabilitystudyresultsTherearetwotypesoftaskswhenusingacomputer:operationalandfunctionalones[40].Operationaltasksarerelatedtointerfacingwiththemachine,whilethefunctionaltasksarerelatedtolearningandcontent.Itisimportanttomaketheoperationaltasksastransparentaspossible,sothatuserscanfocustheirattentionsonthefunctionalaspects–especiallyinalearningenvironment.This chapter summarizes the suggestions emerged from the User Analysis (UA) and theActivityAnalysis(AA)toolsandclassifiesthemaccordingtotheiroperationalorfunctionalnature.

6.1 UserAnalysis(UA)-Desiredproductcharacteristics

Featuresenhancinginterfaceoperability

R Useappropriategraphicstoenhanceunderstanding[19];

R Usebold,primarycolors;

R Usehighcontrastbetweentextandbackground[19]andavoidcolouredtextoncoloured

background;

R Highlighturgentorkeyinformation[19]toaidinselectiveperception[40]

R Makeinterfaceelementslarge,simpletooperateandattractive;

R Keepmenusshortandeasytounderstand

R Providekeys,messagesandmenusinuser’sfirstlanguage

R Useclearlabelsandsigns[18,19,28]

R Labelkeybuttonswithsignsandnon-verbalsymbols

R Includeaudiotosupportwrittenmaterial

R Includevoicedescriptionsformenusandvoiceinstructions

R Considermultiplemodesofinput,suchasincludingcaptionstoenhancetext

R Allowreadingoutofhighlightedwordsorsentencesbysyntheticspeech,andautomaticpop-upof

picturescorrespondingtowordsorphraseswhentheusertapsonthem

R Useaudiopromptstosignalanychangeofstate[19,40]

R Uselowfrequencysounds



R Useaninteractivecharacter,withcontrolsallowingtheusertoadjustthespeedandmotionif

animationsordynamicdisplaysareused[19,18,6]

R Donotusemenusorothertextthatappearsanddisappears[9]

R Minimizethenumberofinterfaceelementsandnumberofbuttonsperpagetominimizescreen

clutter

R Designself-descriptiveinterfaces,withallthepossibleactionsincluded

R Avoidmultiplewindows,complexorcluttereddisplays[19]

R Placethemostfrequentlyusedmenusfirsts

R Arrangebuttonsatthebottomofthescreenorone-level-navigationinsteadofmenustructures.

R Includebackandhomebuttonsinsidethewebpages

R Reducetheneedforfinemotorcoordinationandtwohandedinteractions

R Increasethesizeofclickableareastotap[36]

R Allowuserstoenlargeinterfacesandadjusttextsize

R Provideforonesinglekeyforselectionwheneverpossible

R Allowwarningsandmessagestoappearalwaysonthesamepartofthescreen

R Makemenuitemsorkeyswiththesamelabelperformthesamefunctions(consistency);

Featuresenhancingtheplatformfunctionality:

R Designanarrowstructure[40]

R Insertplainandeasyinformation,keysandmessages;

R Useplainlanguageinshort,concisesentences[19,18,6];

R Reducetheamountofinformationpresented

R Putalltheinfointheflowoftexttheyarereading[28]onthedisplay

R Includeaudiotext/narration[32]



R Donotusecolourstocommunicatemeaning[31]

R Usegraphicsandrecognizableiconstosupportnavigation[19,18]

R Avoidjargonandtechnicallanguage

R Proposechunkmaterials–oneideaperparagraph[18,5]

R Includeresponsesystemstoindicateerrorsinlearningtasks

R Slowdownorturnoffthetimedresponsesandeventuallypromptsincaseofexcessivedelays

R Increasepredictabilityandconsistencyacrosstheplatform

R Providebreadcrumbstoprovideconfirmationofnavigationandreinforceobjectives[18,36]

R Providepromptsandfeedback

R Provideuser-friendlyguideoninternetsafetyandprivacy

R Deviceandplatformmanual,includingpotentialbenefitsoftheplatform

R Offersupport/technicalmanualandtrainingonuseoftheapplication/platform

R Includeawelcomingpersonalizedpageprovidingtemporalandspatialorientationdetails

6.2 ActivityAnalysis(AA)-Desiredproductcharacteristics

Tostart theanalysis, thesixCAREGIVERSPRO-MMDservicestheplatform isconceivedforwereconsidered,tobedetailedinsub-activitiesastheprojectprogresses,i.e.:

• Socialnetworkservice;• Clinical,psychologicalandbehaviouralscreeningservice;• Therapeuticeducationservice;• Treatmentadherenceservice;• Gamificationservice;• Clinicalandsocialreportservice.

An in-depthanalysisof the“Treatmentadherence service”wascarriedout,nourishedbyT.2.3 results, already available at the time being (see Annex 3 – Treatment AdherenceReview).

Otherbasicactivities linked to theuseof theplatformhavebeen included,as logging in,selectingoptionsandservices,buildingone’sownonlinecommunity,etc.…



TheAAtoolwillbeenrichedwithtailoredtasksonce theplatform ispopulatedwithnewfunctionalitiesandcontents;PACTanalysisfindings(WP2)andusers’experience(WP5)willcontributetoidentifyusabilityrequirements.Someinitialcharacteristicsareprovided,basedon the impressions derived from a preliminary demonstration of the platform partnersassistedto:

R Preferonesinglebigbuttontologin,orthefingerprint

R Avoidtechnicalterms(password,id,account,etc)toaskuserstoregister;

R Includetutorials

R Avoidtermsandconditionsthatarewrittenwithtoosmallcharactersorunintelligible

sentences.

R Includeabig“save”button

R Insertanaudio-visualreminderthatdatahavetobesaved

R EnsurecompliancewithEUandnationalrulesondataprotectionandprivacyissues

R Clarifythedifferencesfor“circle”,“contacts”,“friends”

R Includefacilitiestogetfeedbackontheadherencelevel;

R Makedataeditingsimpleandimmediate

R Providefacilitiestosupporttreatmentadherence;

R Designpictograms,charts,colours,writtenactionplanstoorganizemedicationsand

increaseadherence;

R Allowfrequentandeasyexchangeswiththedoctors,toincreasecommunicationand

treatmentadherence;

R Provideeducationalmaterialonthenatureofthediseaseandtheimportanceofthe

treatment;providevademecuminformation(i.e.medicationincompatibility,purpose,etc)ina

simpleandeasytounderstandway;

R Confirmpatientunderstandingofthetreatment;

R Providevariedaidstoremindpatientstotaketheirmedication(phonecall,textmessages,

reminders…);

R Suggeststrategiesrelyingonautomaticassociativeprocesses;



R Makemedicationintakereminderscomfortableandnon-irritating;

R Providereminders,alarms,informationsystemstominimizethecaregivers’riskof

confusionandinaccuracyinthemedicationmanagement

R Providecaregiverswithinformationaboutmedicationmanagement;

R Includeadvisesforcaregivers(verifydrugboxes,prescriptionrenewal…);

R Supportthecaregiverwithaidsandstrategiestoimproveandfacilitatethemedication

management;

The UA and AA provided some preliminary suggestions, which can be the basis of anexhaustivelistofusabilityrequirements.T.1.1isanongoingactivity,closelylinkedtoWP2andWP5results.Thisdocumentaimedtogiveamethodologicalguideandtoidentifysomeavailabletoolstosupportthisapproach.Additionaldatawillbeneededtocompletethestudyandtheinvolvementofusersisexpectedtoconsistentlycontributeinthissense.



7 OtherdesignconsiderationsAlthoughthereisnosetrubricfordesigningforuserswithcognitivedisabilities,thereareseveralvaluablesuggestionsthatencompassbothaccessibilityandusabilitymetricsforuserswithcognitivedisabilities.Somesuggestionsthatnotonlyimproveusabilityforallusersbutmayalsoprovideameasureofaccessibilityforanunderservedpopulationarepresented.

Oftenmakingapagevisuallyinterestingandeasytoreadmakeslisteningtoapageusingascreenreaderextremelydifficult,astheuseofgraphicalspacersandtablescandisruptthereadingorderof related text.Theuseofdatabasedriven textandCascadingStyleSheets(CSS)cancreatepagesthatsatisfytheneedsofbothvisualandauraluserswhilestillmakingit easy to change information and textual data. Additionally, style sheets help to conveycontext, allow for graceful degradation, and make it available for a greater number ofpossiblebrowserstoreadthecodeproperly[41],[7].

Developersshouldprovideuserwiththemeanstocontrolasmanyaspectsofthewebsiteaspossible. The use of CSS (Cascading Style Sheets) can be used to provide control of howinformationispresented.CSScanbeusedtochangefontandfontsize;changethelineheightorspacebetweenlinesoftext;increasethesizeof"clickable"areas;allowformouseoverhighlightingoftextforeasierreading;changethebackgroundcolourofapage;andinvertcoloursandincreasecontrastonthepage[18],[6],[36].

ContentmightbedisplayedinEasyToRead[12]formatorenrichedwithsymbolssothatthecontent is easier to understand for peoplewith cognitive disabilities. AUI would provideinterfaces that offer improved and optimized navigation mechanisms which would betailoredforthecurrentuser.CommonstateoftheartapproachesinAUIarebasedonuserprofilesanddescribethecapabilities,abilitiesandknowledgeoftheuser.Profileserverscananalyse the content and structure of the page requested and create a web page that isoptimizedfortheuser.Someapproachesmonitoruser’sinteractionwiththewebpageandupdateuserprofileifanyproblemswiththeusability,navigationorthecontentaredetected.

SomeparametersthatshouldbeconsideredwhendevelopingAUIsforpeoplewithcognitiveimpairmentsareprovided,tocomplementthelistprovidedatchapter6:

• Identifypre-knowledgenecessaryforausertosuccessfullyutilizethesite[19].• Providedefinitionsandexplanationsforunusualortechnicalterms–takeadvantageof

theABBRandACRONYMtagsinHTML[19],[18].• Ensurethatalertsandfeedbackremainonscreenuntiltheuserremovesthem[19].• Optimizesearchfacilities;includetoleranceformisspellingsandtypos[28].• Ensure that webpages are compatible with screen readers and other assistive

technologies[19].• Usemeaningfulheadings[18],[39],[5].• Makelinelengthnotexceed70-80characters[18].• Avoidlargewhitegapscausedbyfulljustificationtypesetting[18].• Avoidorprovidealternativesfornon-literaltextandcolloquialisms[18].



• Includeplentyofwhitespaceonthepage[36],[18],[5].• Avoidpulldownmenus• Offerusersachoiceof"long"or"short"contentsothattheycandeterminethelevelof

detailthattheyrequire[118,[40].• Design forworkingmemory limitations [5], [3]. Reduce the standard7 ± 2maximum

elementsguidelineforshort-termmemoryto4±2[40].• Usebulletedlistswheneverpossible[18].

Accessibilityanalysesmayalsobenefitfromabigamountofavailabletechnicalsuggestions.Agoodroundupofhumaninterfaceguidelinesfordifferentplatformsalsoexists,indicatingsizingfeatures:LukeWroblewski(www.lukew.com)providessomeusefulindicationsinthissense:

• Avoidfontsizessmallerthan16pixels(dependingofcourseondevice,viewingdistance,lineheightetc.).

• Reducethedistancebetweeninterfaceelementsthatarelikelytobeusedinsequence(suchasformfields),butmakesurethey’reatleast2millimetresapart.

• Buttonsontouchinterfacesshouldbeatleast9.6millimetresdiagonally(forexample,44×44pixelsonaniPad)foragesupto70,andlargerforolderpeople.

FurthersourcesandtechnicalreferenceswillbeexploredanddetailedduringWP2activities.



8 WebaccessibilitystandardsandautomaticconformanceassessmentWhen developing accessible web content, it is also suggested to follow well-knownaccessibility standards suchas theWebContentAccessibilityGuidelines (WCAG)2.0 [48],whichcoverawiderangeofrecommendations.Followingtheseguidelineswillmakecontentaccessible toawider rangeofpeoplewithdisabilities, includingblindnessand lowvision,deafness and hearing loss, learning disabilities, cognitive limitations, limited movement,speechdisabilities,photosensitivityandcombinationsofthese.Followingtheseguidelineswillalsooftenmakewebcontentmoreusabletousersingeneral.

Cognitive Accessibility User Research [46] is another initiative of W3C describing thechallenges of using web technologies for people with learning disabilities or cognitivedisabilities.Theresearchdescribeschallengesintheareasofattention,executivefunction,knowledge, language, literacy,memory,perception,andreasoning. It isorganizedbyusergroups of the following disabilities: Aging-Related Cognitive Decline, Aphasia, AttentionDeficit Hyperactivity Disorder, Autism, Down Syndrome, Dyscalculia, Dyslexia, and Non-Verbal Disability. Additional user groups may be added to future versions. CognitiveAccessibilityUserResearchprovidesabasisforsubsequentworktoidentifygapsincurrenttechnologies,suggeststrategiestoimproveaccessibilityfortheseusergroups,anddevelopguidanceandtechniquesforwebauthors.

8.1 Softwaretoolsforautomaticwebaccessibilityassessment

There isa largenumberofsoftwaretoolsperformingaccessibilityevaluationofwebsitesbasedon theguidelinesofpopularaccessibility standards, suchasWCAG1.0,WCAG2.0,Section508,etc.RecentlysometoolssupportingtheWAI-ARIA(Web-AccessibilityInitiative-Accessible Rich Internet Applications) guidelines have also appeared. Themost commontechnologies that are checked includeCascading Style Sheets (CSS), XHTML,PDF, images,SynchronizedMultimediaIntegrationLanguage(SMIL),andScalableVectorGraphics(SVG).The automated checking on a single web page is the most common feature supported.However,sometoolssupportevaluationofgroupsofpagesorentirewebsites.Thereportof the evaluation results may include step-by-step evaluation guidance, displayinginformationwithinwebpagesormoreformalreporttypes,suchasEARL-basedreports[1].Someaccessibilityevaluatorsalsoproviderepairfunctionalitybychangingthesourcecodeof the web pages, helping with captioning audio or video content, or converting thedocumentintoaccessiblemark-up.

Manytools,suchastheFoxability[15],WAVE[47],HERA[4]andHera-FFX[20],havebeendevelopedbasedontheWCAG1.0guidelines.However,WCAG1.0presentedweaknessesdue the fact that theywerebasedon technologiesof thepastdecade, specificallyHTML.Thus,WCAG2.0wasproposedtosolveWCAG1.0problemsandmadeWCAG1.0obsolete.AftertheestablishmentoftheWCAG2.0guidelines,manyevaluatorswereextendedinordertosupportWCAG2.0.



AChecker[17]isanopensourcewebaccessibilityevaluationtooldevelopedbytheAdaptiveTechnology Resource Centre at the University of Toronto. It supports a variety ofinternationalaccessibilityguidelineslikeSection508,LeyStanca(Italy),WCAG1.0(levelsA,AAandAAA)and2.0(levelsA,AA,andAAA),andBITV1.0(Germany).ACheckerpresentsresultsinthreecategories:knownproblems,likelyproblemsandpotentialproblems.

Worldspace FireEyes [11]Error! Reference source not found. is a free web accessibilityevaluationtoolintroducedbyDequeSystems,IncevaluatingthecomplianceofawebsiteaccordingtostandardssuchasWCAG1(Priorities1,2and3),WCAG2(levelsAandAA),Section 508 and contains some dynamic rules that test for WAI-ARIA compliance. TheFireEyse also includes features such as: color contrast analyser, dynamic report filtering,interactive issue remediationand transcriptsof all pages visited ina session.WorldspaceFireEyes is fully JavaScript aware and handles event-based page content. It works as acomplementoftheFirebugFirefoxextension.

TotalValidator[42] isanotheraccessibilityvalidatorsupportingWCAG1.0,WCAG2.0andSection 508 standards. It includes a HTML validator, an accessibility validator, a spellingvalidator,abrokenlinksvalidator.Thereisawebversion,aFirefoxextension,andadesktopversionofthetoolavailable.

TAW3 [9] is an accessibility validator developed by the Spanish Foundation CTIC(www.fundacionctic.org). It isavailableintwoversions:aplug-inforMozillaFirefoxandinastandalone version. TAW3 analyses websites according to WCAG 1.0 and WCAG 2.0guidelines by providing fixes and recommendations. TAW3 results are presented withdifferentrepresentationofviolations(problems,warnings,andnotreviewed).

WaaT[29]isanothertoolperformingautomaticaccessibilityevaluationofwebpagesagainstonboththeWCAG2.0standardandtheWAI-ARIAguidelines.TheHarmonisedMethodology(HAM)[8]introducedbytheACCESSIBLEECFP7projectwasthebaseforthedevelopmentofWaaT.

The tools above will be used to ensure the accessibility of the CAREGIVERSPRO-MMDplatform.



9 TobeconsideredWhengatheringopinionsandsuggestionsonproductdesiredcharacteristics,differentviewscanemergewith respect toagivenproblem,whichwillhave tobe solved in subsequentdesign.Additionally,conflictscanoccurduetodifferentdesignfeaturesbeingincompatiblewitheachother,someofwhichmaynotbepossibletoresolvewhenasingleproductistobeusedwithawiderangeofusers.Wherefeasible,platformdesigndifferentiationswillbeconsideredtomatchtheneedsofspecificgroups,butinmanycasesitwillbenecessarytodecidehowsuchconflictsbetweendesignconstraintsanduserneedsaretobeaddressed.Prioritizingtherelevanceoftheproposedfeaturescanbeafirststepinthedesignprocess:rating them using a 3-point scale (i.e. high,medium, low priority), can provide an initialindicationofmajorconflictsandwhetherornotasolutioncanbefound.

Productcharacteristicsspecified inthisdeliverablewillbeuseful tosettheusabilitygoalsagainstwhichtoevaluatetheplatform.Usabilitygoalsrepresentwhattheuserscanachievethroughtheplatformandhoweasilyandeffectivelytheycanachieveit.Decidinguponthegoalswhich theproductmustmeet if it is tobe attractive tousers and successful in themarketwillbeachallengingtaskastheprojectprogresses.Thelistofdesiredcharacteristicspresented in this document will be enriched with the feedback derived from the PACTAnalysis (WP2) and the pilots’ development (WP5), and will pose the basis for theidentificationoftheusabilitygoals,themeasurementproceduresandthecriteriaforsuccess.

Muchhasbeenwrittenandreportedonusability,butaccessibilityremainsoneofthemainbarrierstotheexploitationofinnovativeICTbasedproductsandservices.OneoftheCAREGIVERSPRO-MMDchallengeswillthereforeconsistinmakingtheplatformreallyaccessibletoitsusers.



10 Appendices

10.1 UserAnalysis(UA)

Attribute FunctionalImplications Desiredproductcharacteristics

PERSONALCHARACTERISTICSAge>65 Simplicityofdesignneeded Self-descriptiveinterfaces,withall

thepossibleactionsincluded.Attractiveandinteractiveplatform Appropriategraphicstoenhance

understanding[19]Decliningsensoryabilities lossofvisualacuityandcolour

perception,increasedsensitivitytoglareUseofbold,primarycolours;Makeinterfaceelementslarger;AllowuserstoenlargeinterfaceIncreasethesizeofareastotouchortap[36]

soundstonedetectiondecreased[31] UselowfrequencysoundsDecliningmotorabilities slowermovements,poorcoordination,

difficultieswithfinemotoractionsReduceneedforfinemotorcoordinationandtwohandedinteractions

Gender Malesinteractforlongerperiodswithtouchscreensthanfemales[44]

Culturalstatus Possibleloweducation;Levelsofeducationaffectcomputeruse[10][30]

Plainandeasyinformation,keysandmessages;LabellingkeybuttonswithsignsandnonverbalsymbolsVoiceinstructionstosupportreadingmaterial

Readingpatternsinlow-literateusersimplywordbywordreading=>narrowfieldsofviescausesthemtomissobjectsandinformationifnotdirectlyintheflowoftexttheyarereading[28]

Putalltheinformationintheflowoftexttheyarereading[28]Includeauditoryfunctionfortext/narration[32]

Coloursmightrepresentdifferentthingsandbeperceivedindifferentwaysinthedifferentcultures[31]

Donotusecolourstocommunicatemeaning[31]

MotivationinusingICT Motivationtousetechnologydependsonappropriatetrainingandawarenessofbenefits[23][35]

SimpletooperateandattractiveDeviceandplatformmanual,includingpotentialbenefitsoftheplatform

Proposeadynamicandplayfulsystempromotingengagementandenhancingmotivation

Gamification

ExperienceinusingICT Forlow-experiencedusers,thesystemshouldbesimpletooperateandintuitive

Avoidjargonandtechnicallanguage;Useaninteractivecharacter

Continuousencouragements/suggestionsonhowtogoonneeded

Offersupport/technicalmanualandtrainingonuseoftheapplication/platform

Olderadultswithpreviouscomputerandothertechnologyexperiencearemorelikelytobeengagedwithtechnology([24]



Lowexperiencemayrequireeducation/supportonprivacyandinternetsafetyissues

Provideuser-friendlyguideoninternetsafetyandprivacy

Languagesknowledge Elderlyusersmaybeabletospeakandunderstandtheirnativelanguageonly.

Labellingkeybuttonswithsignsandnonverbalsymbols;Providekeys,messagesandmenusinUsers’firstlanguage.

COGNITIVE-CLINICALSYMPTOMSAgnosia Agnosiacanmaketheplatformuse

difficult;presentmaterialsinmultiplemodescanhelpincreasingcomprehension[19,18,40]

Multiplemodesofinput,suchasincludingcaptionstoaudioandscreenreaderstoenhancetext;Useaudiopromptstosignalanychangeofstate[19,40];Readingoutofhighlightedwordsorsentencesbysyntheticspeech,andautomaticpop-upofpicturescorrespondingtowordsorphraseswhentheusertapsonthem;

Aphasia Problemstoprocesslanguageandnumbers[6]Problemsindecipheringauditoryorwritteninputs[6];Proposevisuallyappealingandstronggraphicalcomponents;Proposeshortandeasysentencestomakeunderstandingeasier;Avoidanimatedgraphicsastheycanbedistractingandincreasecognitiveload

Avoidmultiplewindows,complexorcluttereddisplays[19]Considermultiplemodesofinput;Labelkeybuttonswithsignsandnonverbalsymbols;Usegraphicsandrecognizableiconsasnavigationaids[19,18];Controlsallowingtheusertoadjustthespeedandmotionifanimationsordynamicdisplaysareused[19,18,6]

Apraxia Allowvoicecommands;Enlargepicturesanddigitalkeyboards

Attentiondisorders Nocomplexorbusyinterfaces([50];Interfacesshouldcontainingalltheinformationthatusersneed,toallowthemtobuildamentalmodelorinternalrepresentationofthesystemtheyareusing,tofacilitatetheacceptanceofthesystem,andmaketheoperationseasier;

Self-descriptiveinterfaces,withallthepossibleactionsincluded.

Plainandeasyinformation,keysandmessages,inordernottooverburdentheattentionsystem;Restrictbrightcolorsatimportantdetailsorinformation;

Minimizenumberofinterfaceelements-simplify;Backandhomebuttonsinsidethewebpages

Reducetheamountofinformationpresentedonadisplayandallowblankspaces,astheyhelptofocusattention;Minimizeanydistractions–intermsofdesignfeatures(nopop-upsorads)

Chunkmaterials–oneideaperparagraph[18,5]

Executivedysfunction Guidetheusertoappropriateactionswhenmistakesaremade;Simpletouse,intuitive(planningdeficit)

Systemresponsestoindicateerrorsinlearningtasks

Notbusyinterfacebecauseolderadults’attentioninmorethanonesourceofinformationisdeclined[25];Interfaceshouldbefamiliarandeasilyunderstood,likeotherinterventionsfororientation([38];

Minimizenumberofinterfaceelements-simplify;Backandhomebuttonsinsidethewebpages



Restrictbrightcoloursatimportantdetailsorinformation(inhibitiondeficit);

Temporal/spatialdisorientation

Reducethecomplexityofalltheoperations:simplefunctionalityismoreacceptablethansystemswithalargenumberoffeatures;

Reducetheamountofinformationpresentedonthedisplay;Arrangebuttonsatthebottomofthescreenorone-level-navigationinsteadofmenustructures.Simpleinterfacewithnotmanybuttonsperwebpage

Proposeanagendainthehomepagewiththeday'sdate,thetimeofday(morning,afternoon,dinnertime,…),localization(city)andweather(toindicatehowtodressappropriatelyaccordingtotheweather/temperature…).

Includeawelcomingpagepersonalisedprovidingtemporalandspatialorientationdetails

Thinkingandreasoningdisorders

Giveusersflexibletimestocompletethetasks.Thinkandrespondtoonlinestimulirequireslongertimes[40]

Slowdownorturnoffthetimedresponsesandeventuallypromptsincaseofexcessivedelays

Presentinformation–simplyandavoidclutteredorcrowdedscreens;PresentoneitematatimeMinimizeanydistractions–intermsofdesignfeatures(nopop-upsorads);

Avoidmultiplewindows,complexorcluttereddisplays[19]

Problemstoidentifyinformationandintegratethemintomeaningfulchunks[36];Makecontentsbecomemoreappropriateandadvancedasinformationareprovided(Advancementsystem)

Memoryloss Minimizethememoryload;Useshortwordsinpositiveform(easiertounderstand);Usedesignsthatpeoplearefamiliarwithe.g.CIRCAareminiscenceplatformwasdesignedtolooklikeanoldfashionedmusicplayer[2]Keepthesamedesignforthehomepage;

Useplainlanguageinshort,concisesentences[19,18,6];Useclearlabelsandsigns[18,19,28]MinimizebuttonsandonscreenfeaturesdisplayedtominimizescreenclutterKeepmenusshortandeasytounderstand

Becauseofworkingmemoryproblems-Researchsuggestswhenitemsarepresentedoneaftertheother–peoplewithdementiapickedthelastitemasitwasintheirimmediatememory(Astelletal2009);Navigationduringtasksisdifficultforpeoplewithmemoryproblems[30];Gamesstimulatememory[22]Problemsinprocessingsequentialoperations[19]Letusersknowiftheymadethecorrectchoiceandhelpthemtogetbackontrackwhentheymakeerrors[19,18,40]Limitthenumberofoptionstopreventcognitiveoverload[18]

IncreasingpredictabilityandconsistencyacrosstheplatformRandomizingthepresentationofitemscouldbeconsidered;Voicedescriptionsavailableformenus,andvoiceinstructionsBreadcrumbstoprovideconfirmationofnavigationandtoreinforceobjectives[18,36]



Usefamiliarimagerytoaidinmemoryretention[40]Makerecognitionprevailonrecalling:reducetheamountofinformationpresentedonadisplayandallowblankspaces,astheyhelptofocusattention;Ensurethatthesameactionshavethesameconsequences;Avoidrepeatedquestions.

MostfrequentlyusedmenusplacedfirstOnesinglekeyforselectionwheneverpossible;Warningsandmessagesshouldappearalwaysonthesamepartofthescreen;Menuitemsorkeyswiththesamelabelshouldperformthesamefunctions(consistency)

Improperorambiguousnavigationcancreateconfusion[19]Providewaystobacktrackorstartoverinnavigation[19]UsewordgameandrhymestohelpmemorizationAvoidsimultaneoustasks[40]

Consistencyneeded:standardizecontrols,featuresandnavigationProvidepromptsandfeedbackDesignashallowornarrowdecisionstructure[40]

BEHAVIOURAL-PSYCHOLOGICALSYMPTOMSAnosognosia Difficultytopayattentiontovocabulary

used.Usemedicalterms(dementia,Alzheimerdisease,…)onlyforscientificcontributionorcaregiver'sexchange.Positiveandnotstigmatizingwords.

Anxiety Touchscreensreduceolderadults’anxietyabouttechnology;Positivewords,encouragements,valorization(topatientandcaregiver).Soothingcolours.Importancetoplacedateandlocalization.Clearandconsistentinformationtopreventmisinterpretations.

Appetite/eatingdisturbances Delusions Positivewords,encouragements,

valorization(topatientandhiscaregiver).Soothingcolours.

Depressionordysphoria Riskofharassmentduetousers’inappropriatebehavior.Tocontrolinformationfrompostsandmessageswithacontentengine.

Disinhibition/Socialbehaviourdisorders

Forpeopleavoidingsocialinteraction:Gamespromotesocialinteractionamongplayerswhenusingrealtimeverbalcommunication

Elationoreuphoria Hallucinations Maycompromisetheplatformusability Irritabilityorlabiality Simpletooperate,intuitive.Soothing

colours.

Motorandbehaviouralinertia,apathy,indifference

Attractivedesign.Interactivecharacter.

Night-timebehaviours/sleep-wakecycledisruption

Agendawithdate,timeofday,hour,…(forexample:timeofsleep).Soothingcolours.

Repetitiveness/motordisturbance

Maycompromisetheplatformusability



Sexualbehaviourdisorders Controlinformationinpostsandmessagesbyusingacontentenginetospotinappropriatelanguage/behavior.

Verbal/physicalaggressiveness/Agitation

Simpletooperate,intuitive.Soothingcolours.

ACTIVITIESOFDAILYLIVINGEating Drinking Dressing Hygiene Bath/Shower Toilet Transfers Usetabletsratherthanacomputer Mobility Usetabletsratherthanacomputer Orientation-Time Toproposeanagendainthehomepage

withtheday'sdate,thetimeofday(morning,afternoon,dinnertime,etc)

Orientation-Place Localization(city)andweather,withrecommendationsonhowtowearappropriatelyfortheweather.

Communication Visuallyappealing,brightcolours,stronggraphicalcomponents;ProposeshortandeasytounderstandsentencesWordsshouldbeeasytounderstand

Usingthetelephone Simpletooperate,intuitive Houseworking/Gardening Weather? Shopping Noadaptationrequired Managingfinances Noadaptationrequired Games/Hobbies Dailycontentsadaptedtohobbies Transport Noadaptationrequired



10.2 ActivityAnalysis(AA)

Activitiesinscenario Functionalimplications Desiredproductcharacteristics

Logintotheplatform Makeitsimpleandnotconfusing; 1singlebigbuttontologin,orafingerprint;Avoidtechnicalterms(pw,id,account…)toaskuserstoregister;Tutorials

Privacyissues:clarifyprivacyissuesanddataprotectionmethodsinsimpleandaccessibleform

Avoidtermsandconditionsthatarewrittenwithtoosmallcharactersorunintelligiblesentences;CompliancewithEUandnationalrulesondataprotectionandprivacyissues

Selectservicesfromthehomepage

Makethehomepageattractive,notconfusingandwithpositivestatements;Limitthenumberoffunctionsandmakethemwellvisibleandrecognizable

SeesuggestionsfromUA

SocialNetworkservice:

Buildpatients’community Explaintheimportanceoftheonlinecommunitytoencourageitsuse;Makethecommunitieseasytocreate,selectanduse;

Clarifythedifferencesfor“circle”,“contacts”,“friends"

Increaseawarenessaboutself-helpandmutualaid

Makecommunicationchannelwiththecommunitymembersimmediateandattractive,toenhanceitsuseandencourageconversation

Preventpatients’isolation Easyandimmediatecommunicationpossibilitieswithreducedtext/writingrequests

SeeUAsuggestions

Clinical,psychologicalandbehaviouralscreening:

Assesspatients’treatmentadherencelevel,QoLandwell-being,symptomsofdementiaandpsychiatriccomorbidity

Simpleandshortformatforthescales,supportedbyvisualandaudioaidsfortheircompletion;Avoidtext-basedfeedback;

Clarifytheneedtosavedata,ifitisthecase

Big“save”button;Automaticreminder;Autosave;Audio-visualreminders/notificationsthatdatahavetobesaved.

Therapeuticeducation:

Obtaininformationfromtheusersaboutdementia,symptoms,psychiatriccomorbidity;

Makethenavigationeasyandthecontentsimmediatelyrecognizable;Providesimple,adaptedandpersonalizedinformation

Personalizeinterventionsthroughpredictivealgorithms.

Avoidanticipatingfuturetoomuch;Limittheneedforuserinterventionasfaraspossible(i.e.makethesystemmoreautomaticaspossible)



Treatmentadherenceservices:

Identifythetreatmentadherencelevel

Provideasimpletooltoassesstreatmentadherence

Includefacilitiestogetfeedbackontheadherencelevel;Makedataeditingsimpleandimmediate.[Annex3]

Improvetreatmentcompliance Usersatanearlystageofdementiamaybecapableofmanagingtheirmedicationswithlittleassistance[Annex3]

Providefacilitiestosupporttreatmentadherence;Designpictograms,charts,colors,writtenactionplanstoorganizemedicationsandincreaseadherence.[Annex3]

Poorrelationsandscarcecommunicationwiththemedicaldoctorareriskfactorsfornonadherence

Allowfrequentandeasyexchangeswiththedoctors,toincreasecommunicationandtreatmentadherence.[Annex3]

Difficultytounderstandmedicaladvicesandinformationaboutdiseaseandtreatment,aswellastogetenoughinformationfromthemedicaldoctor

Provideeducationalmaterialonthenatureofthediseaseandtheimportanceofthetreatment;[Annex3]Providevademecuminformation(i.e.medicationincompatibility,purpose,etc)inasimpleandeasytounderstandway;Confirmpatientunderstandingofthetreatment.[Annex3]

Difficultytomemorizeinstructions;establishingaroutineorcuesstronglyassociatedwithmedicationtakingactionscanimprovemedicationadherence.

Providevariedaidstoremindpatientstotaketheirmedication(phonecall,textmessages,reminders…);[Annex3]Suggeststrategiesrelyingonautomaticassociativeprocesses.[Annex3]

Trackingwhetherthemedicationwastakenornotisasimportantasremindingtotakethemedication

Makemedicationintakereminderscomfortableandnon-irritating.[Annex3]

Supportthecaregiversinthetreatmentmanagement

Possibledifficultiesandconfoundingfactorswhenperformingthemanagementofcarerecipientmedicationforregimencomplexity

Providereminders,alarms,informationsystemstominimizethecaregivers’riskofconfusionandinaccuracyinthemedicationmanagement.[Annex3]

Lackofcompleteinformationonthetreatmentbecauseexcludedbythemedicalappointmentsforprivacyreasons

Provideinformationaboutmedicationmanagement;[Annex3]Includeadvisesforcaregivers(verifydrugboxes,prescriptionrenewal…).[Annex3]

Medicationmanagementispotentiallystressfulforthecaregiver

Supportthecaregiverwithaidsandstrategiestoimproveandfacilitatethemedicationmanagement.[Annex3]

Gamificationservice:



Increasetheinterestofend-usersonusingtheplatform

Agendawithweather,date,hours,city,gameeachday,dayadvice….Includequizzeswithmultiplechoicequestions;Basethemonhobbiesandpreferences;Useappropriaterewardingschemes.

Clinicalandsocialreportservice:

Sharedatawithdoctors/others; Makethedatasharingautomaticasfaraspossible,thusavoidingusers’operationsinthissense;Providesocialandlegalinformation

Improvetreatments Usefuldata:wheretofindhelp?; Obtainfeedbackfromdoctors Makethedoctors’feedbackclear,

possiblethroughiconsandwithouttootechnicalsentences;Thelinkwithdoctorshouldnotbesystematic:providedoctoronlineonceamonth(?),foradviceandinteraction;



10.3 TreatmentAdherenceReview1

10.3.1 ThepatientwithAlzheimer

Alzheimer’sDisease Alzheimer’sdisease(AD)isthemostcommoncauseofdementia.AccordingtoWHO

itmaycontributeto60-70%ofdementiacases.Thismeansthatabout32outof47.5million

people with dementia suffer from ADworldwide (an estimated prevalence of 40million

patientsworldwide,although itmaybemuchhigher ifweconsider that thediseasemay

beginyearsbeforethefirstsapparentsymptoms).ThecurrentlifetimeriskofADisestimated

tobe10,5%.

PatientswithADsufferfromdeteriorationinmemory,thinking,behaviourandtheabilityto

performeverydayactivitiesnotassociatedwithnormalageing.Itisoneofthemaincauses

ofdisabilityanddependencyamongolderpeopleworldwide.

DespitethefactthatthesymptomatologyofADvariesineachpatientdependinguponthe

impactofthediseaseandtheperson’spersonalitybeforebecomingill,therearethreewell

definedstagesinitssignsandsymptoms:

- Early stage (gradual, slowand insidiousonset): forgetfulness, losing trackof the

time,becominglostinfamiliarplaces.

- Middle stage (clearer and more restricting signs and symptoms): becoming

forgetful of recentevents andpeople'snames,becoming lost athome,having increasing

difficulty with communication, needing help with personal care, experiencing behaviour

changes,includingwanderingandrepeatedquestioning.

- Latestage(dependentandinactivepatient,seriousmemorydisturbances,physical

signsandsymptoms):becomingunawareofthetimeandplace,havingdifficultyrecognising

relatives and friends, having an increasing need for assisted self-care, having difficulty

walking,experiencingbehaviourchangesthatmayescalateandincludeaggression.

1Treatmentadherencereview–FundaciòUniversitariadelBages(FUB),UniversitatdeVic–UniversitatCentraldeCatalunya(UVic-UCC)



Intheneuropsychologicaldomain,ADpatientsstartwithreducedperformanceinepisodic

memorytasksincludingrecognitionaswellasfreerecallandpaired-associationlearningas

aconsequenceof theneurodegeneration inhippocampalareas (1).Asthediseaseaffects

other brain regions, other cognitive symptoms appear (2,3). Although the ability to

understand simple commands is usually preserved (4), deficits in language include

impairmentinsemanticknowledge(verbalfluency,objectnaming,semanticcategorization)

(3) and in verbal comprehension (semantic, syntactic and metaphorical levels) (5,6).

Executivefunctionsdependingonprefrontalcortexarealsoaffected(7)includingproblem

solving(3),workingmemoryandattention(2).Simplelanguageandmotorskillsareusually

thelastabilitiesaffectedinseveredementia(2).

All these cognitive alterations are related to the dysfunction of several neurotransmiter

systems.Specialattentionhasbeendirectedtothecholinergicandglutamatergicsystems.

Cholinergic neurones located in the basal forebrain innervate the neocortex and the

hippocampus (8). This system has a prominent role in cognitive function, especially in

memory, attention and emotion (9,10). When AD interferes with the cholinergic

neurotransmission,cognitivefunctionsbecomecompromised(11–16).

It seems that in AD glutamate levels in the synaptic cleft are increased maybe due to

alterationsintheremovalmechanisms(17–19).Theincreaseinglutamatedepolarisesthe

postsynaptic neurone, altering the function of the NMDA receptor and thereby the LTP

mechanisms (20,21). This mechanism may contribute to the cognitive decline in AD.

Moreover,theexcessinglutamateisrelatedtoneuronexcitotoxicityandcelldeath.Indeed,

thenumberofglutamatergicneuronsisreducedinAD,especiallyinthecerebralcortexand

thehippocampus(17).

TreatmentAlthoughnowadaystreatmentsdonotstopAD,theyallowtoslowtheprogressofthedisease

(22).

Cholinesterase inhibitors (ChEIs) are prescribed formild tomoderate AD. These include

galantamine, rivastigmine and donepezil (23). They bind and inhibit acetylcholinesterase

(AChE),theenzymeinvolvedinthehydrolysisofacetylcholineatthesynapse(24).Bydoing



so,AChincreasesatthesynapseandstabilisesorslowsthecognitivedeclineinAD,producing

smallimprovementsinactivitiesofdailylivingandbehavior(25).ChEIsareusuallyassociated

withmildadverseeffects, includinggastrointestinal-relatedsideeffects(nausea,vomiting,

diarrhea),dizziness,headacheor insomnia (23).Gastrointestinalsideeffectsare themost

commonandlessdangerousbutcardiovasculareffects(derivedfromvagotoniceffects)are

morealarming:hypotension,bradycardiaandsyncopecouldalsoberelatedtoahigherrisk

offailuresandbonefractures(26–28).

Memantine, an uncompetitiveN-methyl D-aspartate (NMDA) antagonist, is prescribed to

treat moderate to severe Alzheimer’s disease (29). It blocks the NMDA receptor when

neurones are too excited, normalising and reducing noise levels in glutamate

neurotransmissionandavoidingglutamateexcitotoxicity(30).Thiswouldimprovecognitive

function (31,32) by improving the signal to noise ratio and would slow neurone loss.

Memantineadverseeffectsareusuallymildandinfrequentandincludedizziness,headache,

insomniaandconstipation(33,34).

MemantineandChEIcanalsobeprescribedincombination(32).

ComorbiditiesComorbiditycanbedefinedastwoormorechronicconditionshappeningatthesametime.

Several studies have linked AD with other comorbidities (35), including psychiatric

(depression, schizophrenia and bipolar disorder) (36) as well as physical alterations

(cardiovascular, ear, nose and throat, genitourinary, musculoskeletal/integument,

metabolic,stroke)(37,38).

Baueretal.(35)suggestedthatsomeofthecomorbidities(stroke,diabetes,atherosclerosis,

Parkinson’s disease and possibly depression) could be considered dementia risk factors

whereas others (fluids and electrolyte disorders, insomnia, incontinence, pneumonia,

fracturesandinjuries)aresupposedtobesequelaeofAD.

Comorbidities are related to increased dementia severity and cognitive and functional

decline(37).



ThetreatmentofcomorbiditiesisanimportantfactorinADcareplanasmanyADpatients

are routinely prescribed at least five drugs ormore (39). Polypharmacy can increase the

number of side effects due to drug pharmacokinetic and pharmacodynamic interactions.

ChEIs can interact with many drugs frequently taken by AD patients (antidepressants,

anticholinergicagents,etc.)whereasmemantineseemstobelesspronetodruginteractions

inAD(interactionsconcerndrugsnotcommonlytakenbyolderpeople)(40).Forexample,

paroxetineandbupropionarestronginhibitorsofCYP2D6,themainhepaticenzymeinvolved

inthemetabolismofgalantamineanddonezepil(41–45).

AclinicaltrialindevelopmentbyCampbelletal.(25)willhopefullyclarifythistopicandits

influenceonadherenceandtolerability.



10.3.2 Thecaregiver

Givendementia’schronicnature,caregiversofdementiapatientsareexposedtoprolonged

stress over long periods of time. The longer the caregiving, the greater the impact on

caregiver’shealth,increasingphysicalandpsychiatricmorbidity(46–50).Someevidencehas

linked caregiving with depression or depressive symptoms (51), altered immune system

function (52),elevatedbloodpressure (53),alteredplasma lipid levels (54),higher insulin

levelsrelatedtoincreasedcoronaryrisk(55),migrainesandcolitis(56)andsleepdisruptions

(57). As important as the treatment of the care recipient, will be the treatment of the

caregiver’shealthproblems.

10.3.3 Adherencetotreatment

DefinitionAdherencetotreatmentcanbedefinedastheextenttowhichthepatienttakesaprescribed

drugaccordingtothetimesandrecommendationsoftheprescriber.

Adherence can be broken down into: initiation (the patient taking the first dose of

medication), implementation (following a treatment regimen), and discontinuation (the

patientreachingtheendofthetreatmentregimenandstopstakingthemedication(58,59).

Similarly,non-adherencemayimply:noinitiationofthetreatmentdueforexampletofailure

to fill the prescriptions (primary non-adherence), reception of the prescription but not

implementationofthetreatmentordiscontinuationearlierthaninstructed(secondarynon-

adherence) (60). Take the medications less often than indicated seems to be the most

commonphenomenon(61).

Discontinuing ChEIs in patients withmoderate-to-severe ADmay lead to a worsening of

cognitivefunctionandgreaterfunctionalimpairmentcomparedwithcontinuedtherapy(62).

AdherenceratesNon-adherenceratesto longtermtreatmentsforchronicdiseases indevelopedcountries

are around 50% (63,64). Adherence estimates among older adults range around 20–80%

independentlyofthepathologicalcondition(65,66).Inparticularcases,adherencecanbeas

lowas0%(67,68)



In ADpatients, adherence to ChEIs ranges form17 to 100% (68,69). The high adherence

estimatesinsomestudiescouldbeattributabletothesupportreceivedbytheirparticipants.

Moreover,adherenceestimatesmayvarybetweenandwithinpatientswithAD.BetweenAD

patients,thosereceivingonlyminimalassistancewiththeirmedicationsandthosereceiving

physicalhelphadthehighestmeanobjectiveadherencerates,96.7%and92.3%,respectively

(68),suggestingthatearlystageindividualsmaybecapableofmanagingtheirmedications

withverylittleassistance.The1-yeardiscontinuationratesforChEIsrangesbetween40-65%

andthe2-3yearsdiscontinuationincreasesto90%(69).

AnimportantaspecttotakeintoaccountisthatADpatientscanhavetheirperceptionofthe

abilitytotimemedicationsparticularlyalteredcomparedtotheiractualperformance(68),

significantlyover-predictingit.

AdherenceassessmentWhenassessingadherence,somevariablescanbeevaluated:

- Percentageofdaysthatthecorrectnumberofdosesorproportionofdayscovered

bytherapy(PDC).ThisisconsideredakeymeasurebythePharmacyQualityAlliance(PQA,

USA)inordertoassesstheproportionofpatientsmeetingthePDCthreshold(thelevelof

PDCabovewhichthetreatmentregimenhasareasonablelikelihoodofachievingmostofthe

potentialbenefit(PQAdefinedathresholdof80%)(70).

- Medicationpossessionration(thesummationofthe“days’supply”ofmedication

refillsacrossaninterval).Thismeasurehasbeencriticisedbecauseofthevariabilityinthe

calculationsandtheoverestimationofadherencethatitmayaccount(70).

- Gapintherapy(percentageofprevalentuserswhoexperiencedasignificantgapin

treatment defined as 30 days in a 6-month measurement period). This is an important

measureasitmayleadtoanadverseevent.ItcanbecomplementarytoPDC.

- Errorsofomission(failuretotaketheprescribedmedicineeachday).

- Errorsofcomission(takingtoomanymedicinesonagivenday).



- Medication Management Tasks: the Drug Regimen Unassisted Grading Scale

(DRUGS) (71) examines performance on tasks designed to simulate drug adherence

behaviour:(1)identifymedicationscorrectly,(2)specifythecorrectdosage,(3)specifythe

correcttimingofdosageand(4)accessingthecontainers(68).

- TaskPrediction:evaluatestheabilitytopredicttheirabilitytoperformmedication

managementtasksthroughananaloguescale(0-100%)priorforeachofthetasksofDRUGS

questionnaire(68).

Numerous instruments (subjective, objective, direct and indirect) (72,73) have been

developed toassess thecapacity tomanageandadhere tomedicines. Someof themare

listedbelow:

- Pillcounts(takenduringthefirstvisitandsometime-e.g.30days-later).In-home

inspectionhasbeenfoundtobemoreaccuratethanclinicvisits(74).Insinglepillcountsit

hastobetakenintoaccountthatpatientstendtorefilltheirmedicationsbeforetheprevious

supplyisdepletedanditcanresultinunderestimationsofadherence(75).

- Medicationmonitoring systems have been used in some studies (76).They allow

calculatingthepercentageofdaysthatthecorrectnumberofdoseswastakenaswellasthe

inclusionofbotherrorsofomissionanderrorsofcommission.

- The tracking of pharmacy claims data is another method used for assessing

adherence.Itallowstotracklargeperiodsoftimewithouttreatment(77).

- Some studies suggest thatpatient self-report andphysician report of treatment

adherencearepoormeasuresofactualtreatmentadherence(78).

FactorsinfluencingadherenceNon-adherencecausescanbeclassifiedasintentionalorunintentional.

AccordingtotheRosenstockmodelofhealthbelief(79),anindividual’slikelihoodofrealising

ahealthrelatedbehaviourisdeterminedby:



- Perceivedsusceptibility(perceivedriskforcontractingtheillness).

- Perceivedseverity(perceptionoftheconsequenceofcontractingtheillness).

- Perceived benefit (perception of the good things that could happen from

undertakingspecificbehaviours).

- Perceived barrier (perception of the difficulties, time and cost of performing

behaviours).

- Cuetoaction (exposuretoexternalor internalfactorsthatpromptactionsuchas

social influence or perception of symptoms). This is the most important behavioural

determinant.

- Self-efficacy(confidenceinone’sabilitytoperformthenewhealthbehaviour).

Recentlysomeothervariableshavebeenaddedtothemodel(80):

- Considerationof futureconsequences (theeffect thatabehaviourcouldhaveon

futurehealthandwell-being).

- Self-identity (one’s perception about him/herself: individuals who perceive

themselvesashealthconscioustendtopositivelyassociatewithhealthybehaviours).

- Concernforappearance(motivationforappearance,attractiveness,andpopularity).

- Perceivedimportance(thevalueapersonattachestotheoutcomesofabehaviour).

Non-adherencehasbeenrelatedtofactorsdependingon:

- The medical system: the number of medical prescribers, polymedication and

complexityofmedicationregimen(includingthenumberoftreatmentrecommendationsto

befollowedandthenumberofmedicationsprescribed(76,81–84).Medicationcomplexity

index(85)isameasureusedinsomestudies(76)toevaluateeachmedicationaccordingto

thetotalnumberofmedications, frequencyofdoses,additionaldirectionstobefollowed

andmechanicalactionsnecessarytoadministerthedosage.



Thecostofthetreatment isalsoafactortoconsideras increasedcopaymentshavebeen

associatedwithdecreasedadherence(86).

- The patient: depression and anxiety (87–90), age (82,90), vision problems (91),

dexterityproblems(92),problemsswallowing,multiplemorbidity,lackofsocialsupportor

not livingwitha relativeor couple (87), riskor fearof sideeffects and forgetfulness and

cognitive decline (83,88). Cases of alcoholism, behavioural problems of resisting care or

wandering have also been related to poor adherence (87). Insel et al. (93) report that a

compositeofexecutivefunctionandworkingmemoryisasignificantpredictorofadherence.

Contrary, health beliefs are thought to be a more powerful predictor of medication

adherencethaneitherclinicalorsociodemographicvariablesbysomeauthors(94,95).

- Patient - healthcare provider relation: Patients report not getting enough

informationfromthemedicaldoctors,havingproblemstounderstandmedicaladvicesand

theinformationabouttheirdiseaseandtreatment,suchasconfusionaboutgenericdrugs

(96).Thismaycausethatthepatient is reluctanttoadheretotheirmedicationregimens.

Studiessuggestthatpatientsdon’tasktheappropriatequestions(83,97).Poorrelationwith

healthcareprovidersandpoorcommunicationbetweenthemandthepatientareriskfactors

fornon-adherencetoo.Thosewhohadnothadtheirmedicationreviewedbyadoctorinthe

last6monthswerealllesslikelytobeadherent(87).

When treatingolderpatients suffering fromcognitive impairmentas is thecasewithAD,

healthprofessionalsmayencounteruniquechallengesastheyexhibitmanyoftheriskfactors

for low adherence to medications, including personal (impaired memory and executive

functions, depression, comorbidities, comprehension difficulties) (98,99), treatment

(adverseeffects)(100)andcontextualfactors(lackofsocialsupport)(98,99).

InthespecificcaseofADtreatment,severalstudiessuggestthatolderpatientsmaybemore

likelytodiscontinueChEIstherapy(101–103),possiblyreflectingamoreadvancedstateof

thedisease,perceivedlackoftherapeuticeffectsorriskofadverseeffects(69).



FemalepatientswithADarealsomorelikelytodiscontinueChEIstreatmentortobenon-

adherent(103)maybebecausetheyarelesslikelytoreceivethecareofacaregiverorthey

experiencemoresideeffectsduetotheirbodyweight(69,104).

Changesinexecutivefunctionoccurringinnormalageinginfluenceadherencetotreatment

(93)andcomprehensionofmedicalinformation.Executivefunctionsallowustoplan,select

theappropriatestrategiesfortheactions,focusourattentionandswitchbetweentasks.As

statedabove,executivefunctionsareaffectedinADpatients.Regardingcognitivedecline,

somestudiessuggestthatthemoreseverethecognitiveimpairment,themoreprobabilities

of ChEI discontinuation (69). Others report lowest adherence in moderate dementia

(invertedU-shapedrelationship)maybedue to thecompensatorymechanisms that those

withmildcognitiveimpairmentdevelop(pillboxes,etc.)andthepresenceofcaregiverswho

administertheirmedicationincasesofseveredementia(87).Thecognitiveimpairmentmay

alsointeractwiththecomplexityinmedicationtreatment.

Socioeconomic barriers to therapy such as having to pay a greater proportion of the

prescriptioncostshavealsobeenreportedasimportantfactorstodiscontinueChEItherapy

bysomestudies(69,103).

Comorbiditiesmay also have an impact on adherence tomedication, with some studies

reportingapositiveassociationbetweenthem(105)-possiblyduetohavingmorefrequent

medical controls-andothers (106) reporting lowerpersistenceandadherence inpatients

withmorecomorbidities.

Theuseofrivastigminepatchincreasespatientandcaregiversatisfactionwiththetreatment

possibly because of increased tolerability (less gastrointestinal side effects) and less

complexityusingit(107,108).

Understandingandbeliefabouttheefficacyandsideeffectsofmedicationhavebeenshown

toaffectadherenceincognitivelyintactindividualsandmayalsoinfluencethatonpatients

with dementia (98). More frequent physician visits may be associated with increased

communicationbetweenthemedicalsystemandthepatient/caregiverdyad.Theincreased

communicationcanhavepositiveeffectsinChEIpersistenceandadherence(105).



Adherencetodementiatreatmentmayalsobeinfluencedbythemedicalprofessionalthat

prescribed it. Barro-Belaygues et al. (109) found that itwas higherwhen theneurologist

made the diagnosis, followed by geriatricians, psychiatrists and lastly by general

practitioners.

RoleofcaregiverinADpatient’sadherenceAlthough frequently ignored in this role, caregivers play a major role in medication

management of the care recipient, performing tasks such as administering medications,

workingoutmedicationschedules,avoidingerrorsandpossibledruginteractions,controlling

sideeffectsandmaintainingsuppliesofmedications(110).Itisespeciallyimportantinthe

caseofADpatientsbecausethecourseofthediseasecausestheinabilityofthepatientsto

manage their ownmedications. A key point is when to switch from the patient’s to the

caregiver’s control of medication (69,98). Cotrell et al. (68) suggest that the informal

caregiverisaccuratepredictingtheabilitiesofthepatienttomanagemedicationtobeable

topromptthedecision.

As inthecaseofthepatient,caregiversmayencountersomedifficultiesandconfounding

factors when performing the management of care recipient medication. Gillespie (110)

identifiedseveralfactorsincluding:

- Regimencomplexity.Informalcaregiversmanagingalargernumberofmedications

aremorelikelytorecordinaccuraciesintheunderstandingofthemedicationmanagement.

Someoftheseinaccuraciescouldbereducedbytheuseofdosageadministrationaids,such

asorganisedpillboxes.

- Someaspectsoftherelationshipbetweenthecaregiverandcarerecipient.

- Unhelpfulhealthcaresystemsandpractices.

- Lackofinformation.Caregiversaren’toftenpresentduringmedicalappointmentsor

medical information is not given to them due to the restrictions sharing confidential

information.Genericmedicationsarealsoasourceofconfusion.Lackofinformationabout

themedicationmanagementrolesthatthecaregiverwilldoandthepossiblesideeffectsof

thedrugshe/sheadministersseemtobeafrequentproblem.



- Responsibilitiesarisingfromthecarerecipients’cognitivedecline.

Thereisincreasingevidencethatresponsibilityformedicationadherenceispotentiallyquite

stressfulforthecaregiver(111).

StrategiestoimproveadherenceInterventionsaimedtoimprovingadherencemaybeclassifiedaccordingtotheprinciplesof

thehealthbeliefmodel(80,112):

- Perceived susceptibility/severity of disease and perceived benefit: Educate

patientonthenatureofthediseaseandtheimportanceofthetreatment,confirmpatient

understandingofthetreatmentandworkonthephysician-patientrelationship.

Mostofthestudiesrecommendeducationstrategiestoimproveadherence(69,98,100).

Thequalityofcommunicationandfrequencyofinteractionbetweenphysicianandpatient

and (or) their caregiver seem to be important determinants of both persistence and

adherence (69). Medication reviews may improve adherence maybe by improving the

doctor-patientrelationshiporemphasizingtherelevanceofmedications(87).Infact,oneof

the most commonly recommended strategies to improve adherence is to build the

relationshipbetweenphysicianandpatient(113).AccordingtoAslametal(112),itcouldbe

achieved by causing a good first impression (a comfortable, clean environment and

considerate and friendly staff), letting the patient share his/her story, feelings and

expectations without interrupting, taking care of the non-verbal communication (eye

contact)andexplainingthediseaseandtreatmentinanunderstandablemannerreassuring

patient’sunderstanding,avoidingthetraditionalandoutdatedpaternalisticapproach.

- Self-efficacy:

Theuseofpictogramsandcolourstodesignateperiodsanddrugsortheuseofmedication

organisers and charts (83) increase adherence. Pill boxes are useful in helping patients

remain organised, especially when they take multiple medications (114) and therefore

reducingthelikelihoodofdrugerrorsinindividualswithprobabledementia.Further,Branin

(115)foundthatolderadultswhoexpressedgreaterconcernabouttheirmemoryweremore

likelytorelyonexternalprops.



Providing the patient withwritten action plans for treatment (very easy with electronic

medical records) may increase adherence because they remove the burden of trying to

memoriseinstructions(116).

Increasingthefrequencyofthe interactionsbetweenphysicianandpatientcanalsoease

thepatient’sperceptionofhis/herabilitytofollowatreatmentplan(112).Bestoutcomesin

chronicdiseasesseemtobeobtainedwhenfollow-upvisitswereprogrammedinintervalsof

≤2weeks.

As statedabove, improving the relationshipbetweenphysicianandpatient isakeypoint

when trying to increase adherence. Apart from changing the perceived benefits of the

treatmentbythepatient,itcouldalsoimproveself-efficacythroughmotivation,ashasbeen

shownintheliteratureforsomeconditions(112,117).

- Perceivedbarrierstotreatment:Affordabletreatmentoptions,decreasedcopays,

simplificationoftreatmentregimens.

Reductionofprescribedmedicationsandsimplificationoftheirregimenhavebeenshownto

beaneffectivewaytoincreaseadherence(65).Combinationdrugsordrugsthatneedtobe

taken only once per day are recommended whenever possible in patients with chronic

diseases(118).Discontinuingmedicationsbasedonthealteredrisk-burdentobenefitratios

ofmanytherapiesinpatientswithadvanceddementiacanbeanotheroptiontosimplifythe

drugregimenofapatient.

- Cuestoaction:Variedaidsthatremindpatientstotaketheirmedication(telephone

calls,textmessages,medicationremindersoftwareforsmartphone,reminderpackaging),

memoryorsuggestionstrategies.

Manyhealthservicesremindpatientstheirappointmentsthroughtheuseoftextmessages

ortelephonecallsasaneffectivewaytoimproveattendance(119).Theuseoftextmessages

to remind patients to take theirmedications has been shown to be an effective way to

improve adherence in several conditions (120,121) whereas in others it seems to be

ineffective(122)maybebecausepatientscanfindthemannoying.



The literature suggests that older adults often rely on contextual cues and automatic or

ritualisedbehaviourstoremembertotaketheirmedications(e.g.,takingpillswhenhaving

meals)(115).Usingprospectivememoryinterventionstoprovidestrategiesthatswitcholder

adults from relying on executive function and working memory processes to mostly

automaticassociativeprocesses(establishingaroutine,establishingcuesstronglyassociated

withmedicationtakingactions,performingtheactionimmediatelyuponthinkingaboutit,

using amedication organiser, and imaginingmedication taking to enhance encoding and

improvecuing)improvedmedicationadherencetoantihypertensivemedicationsinpatients

withoutdementia (123).The interventionproducedgreaterbenefits for thosewith lower

executive function and working memory, suggesting its application in patients with

dementia.

Insel and Cole (76) suggest the use of individualised thememory strategies to improve

adherence by tailoring the cues to remind individuals takemedications (e.g., placing the

medicinesintheareaanindividualroutinelygoes,suchasthecoffeepotforacoffeedrinker,

therebyprovidingavisual cue).Moreover theauthorspropose that trackingwhether the

medication was taken or not is as important as reminding to take the medication: as

confusionmay arise tracking it in repetitive tasks (such as taking amedicationeveryday

during years). This intervention benefited participants with high andmoderate cognitive

functions but did not provide the same benefit for those patients who are cognitively

impaired.

Caregiver’sadherencetothetreatmentIthasbeensuggestedthatthestressofcaringmaycompromisethecaregiver’sadherenceto

hisorherownmedication:Wangetal.(124)showedthatnearlyonethirdofcaregiverswere

noncompliantbyfrequentlyoroccasionallymissingmedicationdoses,andaboutahalfwas

unabletofullykeepappointmentswithhealthcareproviders.Moreovertheauthorssuggest

that the non-adherence rate of the caregivers may be even higher due to the fact that

caregiversmaybe reporting the sociallydesiredanswerduring the interviews.Consistent

with the chronic stress theory of caregiving (125), care duration has been significantly

associatedwiththedecreaseincaregivers’medicationadherenceandmedicalappointment

keepingaswellasbeingfemaleandloweducationallevel(124).



Wangetal.(124)suggestthathelpingcaregiversfindrelieffromcaregivingdutywouldhelp

toincreasecaregivers’health.Theauthorsproposeinterventionssuchas:

- Providingreferralresources.

- Educatecaregiversforself-care(nurses).

- Recruitingotherfamilymemberstohelpprovidecare.

- Usingsupportofsocialgroupsforspecialactivitieswiththepersonwithdementia.

- Providein-homehealthassessment.

10.3.4 Conclusions

Adherence to medications among people living with dementia varies from 17 to 100%

depending on the study and the population. There are objective, subjective, direct and

indirectformstoassessadherencebutoneofthemostrecommendedisdeproportionof

dayscovered(PCO).

The caregiver takesdifferent roles inmedicationmanagement through the courseof the

diseaseandisexposedtoanincreasingburdenofresponsibilitiesasthediseaseprogresses.

Thismakesthecaregiversusceptibletosufferconsequencesonhis/herhealththatmayneed

treatmenttoo.

Regimencomplexity,understandingandbelievesaboutthediseaseandthetreatmentand

therelationshipbetweenthepatient/caregiverandthemedicalprescriberseemtobesome

of themain factors influencingadherence. Themain strategies to improveadherence to

treatmentinclude:i)provideinformationaboutthetreatmentandthedisease;ii)workon

therelationshipbetweenthepersonreceivingthetreatmentand/orthecaregiverandthe

healthcareprovider;iii)increasethepatient’sorcaregiver’ssenseofself-efficacy;iv)simplify

theregimenandv)providecuestoprompttheactionoftakingthemedication.

Interventionstoincreaseadherenceseemtohavesmallsizeeffects(67,69,98).Therefore,a

combination of strategies, personalizing them (76,126) and involving the different

stakeholders(112)couldbetheappropriateapproachtoachievethisgoal.



ProposalfortheplatformAccordingtothefindingsabove,thestrategiestoimproveadherenceintheplatformcould

be:

Strategytoimproveadherence Proposedinterventionintheplatform

Provideinformationaboutthetreatment

andthedisease.

Providesimplifiedandcomprehensible

informationaboutthediseaseandthe

treatment(expectations,adverseeffects,

etc.).

Workontherelationshipbetweenthe

personreceivingthetreatmentand/orthe

caregiverandthehealthcareprovider

Facilitatethecontactbetweenthem.

Increasethepatient’sorcaregiver’ssense

ofself-efficacy

Providecalendars,picturesanddiagrams

aboutwhenandhowtotakeeach

medication.

Providewrittenactionplans.

Simplifytheregimen Provideinformationtothehealth

professionalsaboutthedifferenttreatment

optionsandencouragethemtochoosethe

simplestregimen.

Provideinformationtothehealth

professionalsaboutthebenefits/riskratioto

empowerthemtodiscontinuethetreatment

ifnecessary.

Providecuestoprompttheactionof

takingthemedication

Sendreminderstotakethemedicationto

thepatient,thecaregiverandthesocial

networkaroundthedyad.



Alltheseactionsshouldbedirectedtothepersonlivingwithdementiaandthecaregiverand

the aim should be to increase the adherence to the treatment of the person livingwith

dementiaaswellastheadherenceofthecaregivertohis/herowntreatment.Animportant

point is when to switch from a patient directed intervention to a caregiver directed

interventiontoincreasepatient’sadherencetomedications.ToolslikedeDRUGSscalecould

provide objective information about the ability of the patients to manage his/her own

medicationinordertotakethisdecision.

Todecreasetheburdenofthecaregiver,theplatformcouldalsoinvolvethesocialnetwork

aroundthedyadinallthestrategies.

“ThisprojecthasreceivedfundingfromtheEuropeanUnion’sHorizon2020researchandinnovationprogrammeundergrantagreementNo690211”

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10.4 Glossary

Awareness Consciousknowledgeofone’sowncharacter, feelings,motives,desiresandhealthstatus.

BITV The BITV-Test is a reliable and comprehensiveaccessibility evaluation instrument. 50 detailed teststepshelpassessingwhetherinformation-orientedwebsitesareaccessibleforuserswithdisabilities.

CognitiveabilitiesThe individual's capacity to think, reason, and solveproblems.Cognitiveabilityismeasuredthroughtestsofintelligenceandcognitiveskills.

Cognitiveimpairment

Whenapersonhastroubleremembering,learningnewthings, concentrating, or making decisions that affecttheir everyday life. Cognitive impairment ranges frommildtosevere.

ComorbidityItreferstomorethanonedisorderordiseasesthatexistalongsideaprimarydiagnosis.Theadditionaldisorderscanbeofpsychologicalorpurelyphysiologicalnature.

DementiaIt's an overall term that describes a wide range ofsymptomsassociatedwithadeclineinmemoryorotherskills severe enough to reduce a person's ability toperformeverydayactivities.

Design

Realizationofaconceptorideaintoaconfiguration,drawing,model,mould,pattern,planorspecification(onwhichtheactualorcommercialproductionofanitemisbased)andwhichhelpsachievetheitem'sdesignatedobjective.

Digitalskills

Thesetofskillsandcapabilitiesneededtofullyinteractwithdigitaldevicesandcontents.Inparticulartheyarelinkedtothecapabilitytomanageinformation,communicate,purchasegoods,create,identifyandsolveproblemsviadigitaldevices/solutions.

Dyad–careunit Thepersonwithdementiaandthecaregiver.

EARL EvaluationAndReportLanguageOverview



Functionalrequirements

The list of functions requested to a technologicalsolution.

Gamification

Gamification is the application of game elements anddigitalgamedesigntechniquestonon-gameproblems,suchashealthproblems, social impact challenges andbusiness.

HealthCareProfessionals

Healthprofessionalsmaintainhealthinhumansthroughthe application of the principles and procedures ofevidence-based medicine and caring. (e.g., Doctors,Psychologists,Geriatricians,PsychiatristsNurses)

InformalcaregiverAnyrelative,partner,friendorneighbourwhoprovidesa broad range of assistance to an older person or anadultlivingwithachronicordisablingcondition.

Interface Aconnectionbetweenapersonandacomputer

MilddementiaAstageofdementia including increased forgetfulness,slight difficulty in concentrating, decreased workperformance.

ModeratedementiaAstageofdementiaincludingdifficultyinconcentrating,in remembering recent events, in managing finances,travelingalonetonewlocations,orcompletingcomplextasksefficientlyoraccurately.

Non-Functionalrequirements

The list of required aspects of a given technologicalsolutionssuchasshape,dimension,colour,usabilityandaccessibilityelements.

PersonLivingwithDementia(PLWD)

A65+yearoldindividual, livingwithmildtomoderatedementia,whoisreceivingprofessionalservicesfromaqualified medical or allied health practitioner tomaintain, improve or protect their health or reduceillness,disabilityorpain.

Platform

A"platform" isasystemthatcanbeprogrammedandcustomizedbydevelopersinclosecooperationwithfinalusers; it can provide set of services and contents,tailoredtousers’requirements.

ProfessionalcaregiverAcareproviderassociatedwithaformalservicesystem(healthsystemorwelfaresystem),eitheraspaidworkerorasvolunteer.

SocialCareProfessionals

Professionalsintendedtoadvancethesocialconditionsofacommunity,andespeciallyofthedisadvantaged,by



providing counselling, guidance, and assistance (careprofessionals,socialassistants,familycarers)

SocialNetwork

Anonline service or site throughwhich people createandmaintaininterpersonalrelationships.Theyareusedto share personal information, or to interact withspecificcommunities.

SMIL The Synchronized Multimedia Integration Language(SMIL,pronounced"smile")

SocializationAcontinuingprocesswherebyan individualacquiresapersonal identity and learns the norms, values,behaviour, and social skills appropriate to his or hersocialposition.

TAW3 TAWisatoolfortheanalysisofWebsites,basedontheW3C-WebContentAccessibilityGuidelines;TheTAW3analysis engine is available as different tools, so theusers can choose and use which better suits his/herneeds.

WCAG WebContentAccessibilityGuidelines

W3C The World Wide Web Consortium (W3C) is aninternationalcommunitythatdevelopsopenstandardstoensurethelong-termgrowthoftheWeb.W3CoperatesunderourCodeofEthicsandProfessionalConduct.



10.5 References

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