MedGUIDE D1.1 End-user requirements and specificationmedguide-aal.eu/.../MedGUIDE-D1.1-User-Requirements-final-31-okt-2… · Sept/Oct 2017 Results from end-user interviews Janna

D1.1 Page1of64 FINALv1.0

MedGUIDE ICT Integrated System for Coordinated Polypharmacy Management in Elders with Dementia

D1.1 End-user requirements and specification

Projectacronym: MedGUIDEAALJPprojectnumber: AAL2016-052DeliverableId: D1.1DeliverableName: End-userrequirementsandspecificationStatus: Final(v1.0)DisseminationLevel: PublicDuedateofdeliverable: M4Actualsubmissiondate: October,31,2017Author(s): Helianthe Kort, Bas Steunenberg, Saïda de

Vries,ChantalHuisman, JannaAlberts,RiittaHellman,ElsDik

Leadpartnerforthisdeliverable: HU-UASContributingpartners: HU-UAS,IVM,CCARE,KARDE

Project partially funded by AAL Joint programme and “ZonMW” (NL), “The Research Council of Norway” (NO), “FederalDepartmentofEconomicAffairs,EducationandResearch/StateSecretariatforEducation,ResearchandInnovation(SERI)”(CH),“Unitatea Executiva pentru Finantarea Invatamantului Superior, a Cercetarii, Dezvoltarii si Inovarii (UEFISCDI)” (RO) and“ResearchPromotionFoundation”(CY)undertheGrantAgreementnumberAAL-2016-052.


VERSIONHISTORYVersion Authors Date Description Bas Steunenberg, Helianthe Kort, Chantal Huisman,

Riitta Hellman, Gro Marit Rodevand, MarinaPolycarpou,JannaAlberts

August2017 Userresearchprotocol

Ritta Hellman, Gro Marit Rodevand, Anja Vaalbekk,MarinaPolycarpou,ChantalHuisman

Sept/Oct2017 Resultsfromend-userinterviews

JannaAlberts 18-09-2017 Firstanalysisofresults0.1 ChantalHuisman,BasSteunenberg,HeliantheKort 26-09-2017 Firstdraft

0.2 ElsDik 29-09-2017 InputIVM(tertiaryend-users)0.3 Chantal Huisman, Bas Steunenberg, Helianthe Kort,

SaïdadeVries03-10-2017 Firstfulldraft

0.4 JannaAlberts,RiittaHellman 17-10-2017 Insertfeedbackonversion0.30.5 ChantalHuisman,BasSteunenberg,HeliantheKort 10-10-2017 Newversionafterfeedback0.6 Bas Steunenberg, Janna Alberts, Riitta Hellman,

HeliantheKort27-10-2017 Insertfeedbackonversion0.5

0.7 Helianthe Kort, Bas Steunenberg, Saïda de Vries, ElsDik,ChantalHuisman,JannaAlberts

27-10-2017 Newversionafterfeedback

0.8 MartijnVastenburg,RiittaHellman,SotiaNicolaou 31-10-2017 ReviewCCAREandMateria1.0 HeliantheKort,BasSteunenberg,ChantalHuisman 31-10-2017 Finalversion


TABLEOFCONTENTS1 Executivesummary..............................................................................................................................42 Introduction.........................................................................................................................................53 Researchprotocol................................................................................................................................74 Participants..........................................................................................................................................95 Results................................................................................................................................................11

5.1 Primaryend-users......................................................................................................................115.2 Secondaryend-users..................................................................................................................145.3 Tertiaryend-users......................................................................................................................185.4 Technologicalaspects.................................................................................................................26

6 Discussion...........................................................................................................................................276.1 Limitations..................................................................................................................................27

7 Conclusion..........................................................................................................................................298 References..........................................................................................................................................309 Appendix1:Researchprotocol..........................................................................................................31


1 Executivesummary

TheMedGUIDEproject aims to improve thequalityof lifeof elders, support thenetworkof informalcaregivers, and to prevent reduction in the medication self-management capabilities of the elderlypatients,allinordertoprolongindependentliving.End-usersoftheMedGUIDEsystemare:patientswithdementia(PwD)(primary),formalandinformalcaregivers(secondary)andhealthcareandpharmaceuticalprofessionals(tertiary).

Theseend-usersgroupshavebeeninterviewedingroupsessionsandface-to-faceinterviewsinCyprus,NorwayandtheNetherlands.Thecentralaimsoftheseinterviewsweretounderstandtheuserneeds,inordertobeabletodefinetheend-userrequirements(task1.1)oftheMedGUIDEproject.

A research protocol has been developed in order to have uniformity in the exploratory sessions andinterviews.Theresearchprotocolhasbeensubmittedto(national)medicalethicalreviewboardsinTheNetherlands, Cyprus andNorway to seewhether or not approval is needed. In The Netherlands andNorway no approval was needed from the (national) medical ethical review boards. In Cyprus, userresearchwasdelayeduntilapprovalwasgranted.Intotal23primaryend-users,24secondaryend-usersand15tertiaryend-usersparticipatedintherequirementsdefinitionphase.

ThefindingsfromthesessionsandinterviewswithPwDswere in linewiththeresultsasexpressedbysecondaryend-usersandtertiaryend-users.Intheinterviews,PwDsprovidedaclearoverviewoftheirdailylives.Ingeneral,medicationintakeofPwDsisscheduledaroundtheirpersonalactivitiesandusuallyaroundtheirmeals.Medicationintakeisseenaspartofhavingamealorassomethingwhichisprovidedbytheirinformalcarersorcareprofessionals.ThePwDsandtheirinformalcarersgenerallytrytokeepadailyroutine.Resultsretrievedfromtheinterviewswithcareprofessionalsandtertiaryend-usersweremostly related to the symptoms caused by dementia syndrome, and how these symptoms limit thefunctioning of daily life of the PwDs. Also, the occurrence of side-effects and difficulties with themedication-managementwerementioned.

Findingsregardingthespecificationsrangefrom;takenintoaccountvisualergonomics,limitationswithallsensesastotheresponsivenessandusabilityaswellaseaseofuseofthesystemtodevelop.Accordingtotheend-users,thesystemshouldalsosupportPwDindependencyandfeelingofcontrol.Thesystemshouldhelptheend-user(s)togetbetteroreasieraccesstoinformatione.g.medicationuseandside-effects.Thesystemshouldnot leadtoanextracareburdenof informalcarersbutshouldsupportthePwDs in their life. The system shouldenable integration as far aspossibleby relyingon internationaltechnologystandardsormustbeembeddedinalreadyexistingsystemsusedbyhealthcareprofessionals.


2 Introduction

Dementiaisstillincurable.Dementiaisanumbrellatermdescribingamultifactorialdiseasewhichaffectsthe brain. Management of dementia requires both pharmacological as well as non-pharmacologicalinterventions.Thetreatmentofdementiaisahugechallengeandonlyfewdrugshavebeenapprovedforsomeformsofdementia.Over21%oftheelderssufferingfromdementiaareexposedtopolypharmacy.Themajorityoftheolderadultswithdementiaareusingoversixmedicationsadaysuchasanti-dementiamedicationormedicationstodealwiththesymptomsofdementia.Onaverageelderswithdementiahavetwotoeightadditionalchronicdiseases.Bothmedicationprescriptionandmedicationadherencetendtobeachallengeincaseofdementia:

• Itcanbedifficultformedicalprofessionalstoproperlyassessthebehaviouralandpsychologicalsymptomsofthepatient,sincechangesaregradualandarelikelytobemultifunctional;

• Due to cognitive decline, it tends to be challenging for the patient to take the appropriatemedicationattherighttime.

In the MedGUIDE vision, the key to improve the medication process for people with early stage ofdementia is tocontinuouslycombineautomatedmonitoringwith inputs fromtheelderlypatientsandtheirinformalnetworkorcaregivers.Thenetworkofcaregiverswillbe‘eyes,earsandhands’ofmedicalprofessionals.MedGUIDEwillbuildastate-of-the-arttool,whichprovides:

• Insightintheactualneedsofelderswithdementia;• Insightinactualmedicationuse,sideeffectsandadherence;• Supportforimprovingthecareandmedicationadherence.

TheMedGUIDEproject aims to improve thequalityof lifeof elders, support thenetworkof informalcaregivers, and prevent the reduction in the medication self-management capabilities of the elderlypatients,allinordertoprolongindependentliving.End-usersoftheMedGUIDEsystemare:patientwithdementia(PwD)(primary),formalandinformalcaregivers(secondary)andmedical-andpharmaceuticalprofessionals(tertiary).

Figure1showsthehigh-levelplanningofuserresearchanduserinvolvement.Theend-userrequirementsanalysisispartofphase1(understanding).AccordingtotheMedGUIDEworkplan,thisphaseshouldhaveended inM4. The consortium did however experience delays in finalizing the research protocol andreceivingapprovalfromthereviewboardcommittees.ThedocumenthasthereforebeenfinalizedinM10.

Figure1:High-levelplanningofuserresearchanduserinvolvement


This deliverable is the result of task 1.1: “MedGUIDE end-user requirements analysis and technologyconceptualmodeldefinition”.Theend-userrequirementsaredescribedinD1.1;theconceptualmodelisdescribedinD1.2andD1.3.TodefinetherequirementsfortheMedGUIDEsystemweused:1)thefindingsfromourend-userresearch,2)findingsfromliteratureand3)theprojectproposal.Thecentralaimofthistask1.1istheend-userrequirementanalysisandtechnologyconceptualmodeldefinition.

Thereportfurtherdescribestheresearchprotocol,presentsthefindingsfromuserresearch,andpresentstheresultingrequirements.


3 Researchprotocol

A research protocol was defined in order to align the exploratory sessions and interviews in Cyprus,NorwayandTheNetherlands.Thefullresearchprotocol,definedbytheend-userpartnersandCCARE,canbefoundinAppendix1.Theresearchprotocolhasbeensubmittedtonationalmedicalethicalreviewboards inTheNetherlands,CyprusandNorway to findout ifapprovalby theboard isneeded. InTheNetherlandsandNorwaynoapprovalwasneededfromthe(national)medicalethicalreviewboards.InCyprus,however,theprotocolhadtobeapprovedbythebioethicscommittee–approvalwasgiveninM7.

GroupinterviewsandindividualinterviewswereheldtofindoutthewishesandneedsofthePwDthroughanexploratorysessionorhomevisit.TheaimoftheexploratorysessionistogetfirstinsightsandgivedirectionsforpossiblesolutionsforMedGUIDE.Alsoitallowedresearcherstogetinsightintotheattitudesoftheprimarytargetgroupandsecondarytargetgroup(inthiscaseinformalcaregivers)towardsexistingtechnologicalsolutionsthatsupportmedicationadherenceingeneral.Thehomevisitsconsistedofanin-depthinterviewwiththePwDandtheircaregiverandanobservationofthePwDintheirdailyroutinesathome.Theinterviewfocusedonthefollowingtopics:

• Dailyactivities;• Useofmedication;• Extraquestionsforcarers,abouttherelationshipwithPwD,abouttheinformalcareandabout

themedicationofthePwD;• Firstfeedbackonsupport/toolsformedicationadherence;• Useofonlinetoolsformedicationadherence.

InadditionthePwDandtheinformalcaregivercreatesacarenetworkmap,whichprovidesinformationtodevelopauserprofile.

Careprofessionals,pharmacists,familydoctorsandothercareprofessionalsworkingwithpersonswithdementiaarealsopartoftheresearch.Theyareinterviewedingroupsessionsorasindividual.Thetopicsdiscussedwiththemwere:

• Adherencemonitoring;• Counselling;• Communication;• Technologicalsupport;• Onlinetools;• Medicationreview.


Recruitment

Theprotocol describes the recruitment process of all the categories of end-users: primary end-users,secondaryend-usersand tertiaryend-users.Theprotocol includesan Invitation letter;an Informationletter;aconfirmationletter;andaninformedconsentform.

Primaryend-users,beingpersonswithdementia(PwDs)

Secondaryend-users,beinginformalcaregiversaswellasnursesandothercareprofessionalswhoprovidecareathome.

Tertiaryend-usersbeingpharmacistandphysicians.

ResearchtargetingPwD,informalcaregiversandprofessionalcaregivers

Theprotocolisdividedintwoparts:(1)researchtargetingPwDandinformalcaregivers,and(2)researchtargetingprofessionals.ThesessionsandinterviewswithPwDsandinformalcaregiverswerecombined,sincePwDwerealwaysaccompaniedbyaninformalcaregiver.

Theprotocoldescribestheproceduresforthemeetings(exploratorysessionandhomevisit)withPwDsandinformalcaregivers.Andtheprotocoldescribestheproceduresforthemeetings(exploratorysession)withcareprofessionals.Theprotocolalsocontainsaplanningoftheresearchoftask1.1andalistoftheinterviewtopics.


4 ParticipantsTable1belowshowsthenumberofend-usersparticipatingintherequirementsanalysisphase.

Table1:Overviewofincludedend-users Primary** Secondary Tertiary

Understanding(partner,country)

IVM&HU-UASNL

MATCYP

KARDENOR

IVM&HU-UAS

NL

MATCYP

KARDENOR

IVMNL

HU-UASNL

MATCYP

KARDENOR

Planned 16-24 8-12 18-24 12-16 6-8 8 5 0 0 0Realized 17* 6 0 7(3) 9(6) 8(3) 5 3 3 4

*=13end-usersareincludedintwogroupsessionswiththreeinterviewers (x)= number of informal caregivers**=livingsituationPwDs:12PwDliveswithpartner,2PwDlivesalone,9NoDataAvailable

DuetodifficultieswiththerecruitmentofPwDsinNorway(nodirectaccess),itwasnotpossibletoincludePwDsfromNorwayinthisphase,ascanbeenseenintable1.Inagreementwiththeend-userpartnersandCCAREitwasdecidedtousetheinterviewsfromCyprusandTheNetherlandsasabasisforthePwDuserrequirements.Norwaycheckedtheresultsandaddedcountry-specificrequirementsbasedoninputofexperts.Table1alsoshowsmoretertiaryend-usershavebeenrealizedthenplanned.Therecruitmentcallresultedinanunexpectedhighernumberoftertiaryend-users–itwasdecidedtomakeuseofthisextranumberofparticipants.

Primaryend-users

Table2showsthechannelsthatwereusedbytheend-userpartnerstorecruitprimaryend-users:

Table2:Channelsusedtorecruitprimaryend-users(via) IVM-HU-UAS KARDE MATCareorganizationsincludingdaycarecentresandhomecare

X X X

Ownorganization/personalnetworkresearchers

X X X

Patient/elderlyassociations

X X X

Facebook X X Regionalnetworks/meetings

X

WebbasedforaforAlzheimer

X X

Associationsforprofessionals

X

Medicaldoctors X X

Ascanbeseenintable2,PwDsarerecruitedthroughdirectchannelsviatheorganizations’ownresourcesandnetworkasinCyprus,orthroughindirectchannelsasviaprofessionalsorviathenationalAlzheimerassociation(theNetherlands).


Secondaryend-users

The secondary end-users are the informal caregivers of the PwDs and the healthcare professionals.InformalcaregiverswererecruitedtogetherwithPwD;therecruitmentchannelsaredescribedintable2.

IntheNetherlands,healthcareprofessionalswererecruitedthroughtheexistingnetworkoftheprojectpartners:

• Pharmacists;• Familydoctorsandnursinghomephysicians;• Communitynursesandcasemanagersdementia(Dutchhealthcareorganizationprofessional).

InNorwayhealthcareprofessionalswererecruitedthrough:

• Pharmacists;• Generalpractitioners;• ThenetworkofKARDEandpersonsworkinginKARDE;• GeriatrichospitaldepartmentsinOslo(Norway);• ContactwithcommunityhealthcareinOslo(Norway).

InCyprus,PwDsandtheirinformalcaregiverswererecruited:

• After identifying theprimaryend-users, their informal caregiversandhealthcareprofessionalswereapproached.

Tertiaryend-users

Thetertiaryend-usersarethemedicalprofessionalsandpharmacists.IVMisresponsibleforthisgroup,theyusedtheirnetworktorecruittheseend-users.


5 Results

ThetranscribedfindingsfromtheinterviewsofallthreecountrieswereanalysedbyCCAREandHU-UASandseparatelytheyidentifiedrelevantthemestoaddresswithregardtomedicationadherence(thematicanalysis).Analysesbeganwithopencoding,formingcategoriesof informationaboutthephenomenonbeingstudiedbysegmentingtheinformation.Thetranscriptswerereviewedline-by-line,andcodeswereplacedinthemargins.Inthenextphaseaxialcoding,wasperformedthroughwhichthecorethemeswererelated,viaacombinationofinductiveanddeductivethinking.Relevantquoteswereselectedanddividedintothemesbyeachofthetwocodersindependently.Thetwocodersmettodiscusstheirfindingsandresolveanydifferences,theyalsocomparedtheirfindingswiththefindingsofCCARE.Afterconsensusbytworesearchers,thecodeswereestablishedforeachend-users’targetgroup.Findingswerepresentedstructured,alignedwiththeinterviewtopicsandothertopicsnotmentionedintheinterviewtopiclist.

5.1 Primaryend-users

From several sources (websites from Alzheimer associations and literature) can be read on how thediagnosisofdementia affects apersonand their informalnetwork. Figure1 gives anoverviewof thesymptomsamongPwDandthepercentagesofcarersforwhomthesesymptomscauseproblems.

Figure1:Overviewofsymptomsamongpeoplewithdementiaandthepercentagesofcarersforwhomthesesymptomscauseproblems1

Fromtheinterviewsitbecameclearthatpersonswithearlydementiagothroughaphaseofdenial.Thisalso has an effect on theirmedication adherence. Some PwDs do notwant to take theirmedicationbecausethebenefitofthemedicationsisnotcleartothem.Manypersonswithdementiaandtheirfamily

1Ageing-in-place:theintegrateddesignofhousingfacilitiesforpeoplewithdementia(http://repository.tue.nl/685914)


believethatthesedementiamedicationhaslittleornoeffect.Oneinformalcarersaidintheinterview;bypresentingthemedicationasyourvitaminpills,mydadwaswillingtotakethemedication.Or,theysimplyforgetwhatthesemedicationsareforandthentheyrefusetotakeit.PwDshavedifficultywithswallowing the medications or difficulty taking some medications together at the same time.Furthermore,informalcarersfeelahugeresponsibilityforthemedicationadherenceofthePwDs.DuringtheinterviewswiththePwDstherewasalwaysaninformalcarerpresent,soinformationinthissectioncomesfromPwDandsometimesfromaninformalcarer.

5.1.1 RoleofthecarenetworkofthePwD

Figure1showshowthediagnosisofdementiaaffectsapersonandtheirinformalnetwork.Tobeabletocopewithdementia,itisnecessarytohaveanetworkof(informalandprofessional)caregiversinplace.Acarenetworkcanconsistofmanypersons,forexample:partner,children,family,neighbours,friends,homecarenurses,daycarefacilities,doctors,pharmacistetc.Thenetworkcanbehelpfulformanythings,includingcaregivingactivities,butalsotospareforexamplethepartnerforanevening.Whenthereisno(informal)carenetworkinplace,itisalmostimpossibleforPwDstolivesafelyintheirownenvironment,movingtoahealthcareorganizationisthenprobablynecessary.

5.1.2 Daystructureanddaycare

Relatedtothetopic“daystructureanddaycare”,primaryend-userspointedoutthatthesystemmustbeadapted to the daily routines of a person with dementia. The amount of daily activities is limited,comparedtootherolderpeople.Personswithearlydementiatendtosticktoafixeddailyroutine(wakingup,bathing,breakfast,leisureactivityorworking,lunch,leisureorhouseholdactivityornapping,dinner,toileting,goingtobed).Thisfixeddailystructurehelpsthemtomemorizethingsandtomaintaintheirorientation.Medication in-take is in general also structured around themeals during the day. PwDsgenerallydonotthinkaboutmedicationadherenceandmedicationsafety.Forthemitispartofthedailyroutine.PwDsaresupportedintheirmedicationadherenceandobservationofsideeffectsbybothformalandinformalcaregiversofwhichthelatterhasthelargestvolumeincaregiving.

• AMedGUIDEplatformshouldbeabletotriggerremindersinrelationtodailyroutinesofPwD.

5.1.3 Routing

PwDstrytosticktoafixedroutingaroundtheirdailyactivities.Thisroutinghelpsthemmemorizetheirintention to take theirmedication or execute any task. A PwD: “When I pass the refrigerator formybreakfastIseetheegg-cupswithmymedicine.”

• ThelocationoftheinteractionsoftheuserwiththeMedGUIDEplatformshouldbeadaptabletotheroutepeoplehaveathome.

5.1.4 Information

PwDsnolongerunderstandwhytheyhavetotaketheirmedications,theydonotrecallthenameofthemedicationwhichisprescribed,andtheydonotknowtheeffectsthemedicationhas.Peoplewithearlydementiahaveresistancetousemedication,especiallytoAlzheimermedication.Theydonotbelieveithasanybenefit.Duetochangesintheprescribedmedication,orchangesinthelooksofthemedicationduetopharmaceuticalamendments,theseniormightbelesswillingtotakethemedication.Thus,theinformalcarersgiveinformationaboutthepurposeofthemedicationandexplainoverandoveragainhow themedication intake shouldbe.Theexplanationof the informaland formal caregivershelps toconvincetheseniortotaketheirmedication.Aninformalcarersaid:“Wealltried(includinghisdoctor)to


explaintohimwhyheneedstotakethemedicationbutattheendwedecidedtonamethemvitaminsforforgetfulnessinsteadofmedication”.

• Information to the user should be provided about aspects on medication effects as well asmedicationadministration.Mentionedwas:video’s,photo’sorothercommunicativematerialscanbeused;

• MedGUIDE should communicate to the PwD and his/her care network when themedicationprescribedischanged(forexamplethetype,dose,colourorshape);

• MedGUIDE shouldprovide thePwDandhis/her carenetworkwith informationabout side-oradverseeffectsofthemedicationthePwDisusing;

• Informationpresentedshouldbeaccessibleforalluserswithalllevelsofhealthliteracy.

5.1.5 Trackingandsharingself-reporteddata

WhenaPwDreceivescarefromformalcaregivers,thewell-beingofPwDistrackedthroughobservationandconversationbytheformalcaregiver,aswellasbytheinformalcaregiver.Informalcarerscanenrichthisinformationviaself-reporteddata,whichcanthenbesharedwiththecaregiversofthecarenetwork.

• TheMedGUIDEplatformshouldfacilitatesharingofself-reportedinformationwithprofessionalsandinformalcaregivers;

• The MedGUIDE platform should support users in using the platform, e.g. by providing anintroductionvideoorinstructionmanual.

5.1.6 Triggers

Theresultsfromtheinterviewssuggestthatthekitchenandthefridgeareimportantspotsinadwellingformedicationsreminders.Medicationintakeisingeneralaroundmeals.Furthermore,itcanbehelpfulifthereisasoundsignaltoremindthePwDstotaketheirmedicines.AnotherissueregardingpromptsisthatsomePwDsrepeatthesameinformationagainandagain,thiscanbeusedasatriggertoremindthemtheirmedication.

• The moments and locations of the triggers should be adaptable to consider the daily(instrumental)activitiesandroutinesofthePwD.

5.1.7 Privacy

Privacywasalsomentionedasan issue to take intoaccount. TheMedGUIDE systemshouldhave thestandardmodeofnon-sharingdataandinformation.PwDsandinformalcarersshouldbeabletochangethesesettingsbythemselvesandincommunicationwiththeirGeneralPractitioners(GP).

• MedGUIDEshouldsupportthePwDandhis/herinformalcaregivertodefinewhohasaccesstothepersonaldata.

5.1.8 Senses

Whatalsoismentionedandwhatisknownfrombiologicalageing,isthatPwDshavedifficultieswiththeirsenses.Especiallymotorimpairment(e.g.tactile),hearingandvisualfunctioningaredeclinedorimpaired.

• TheMedGUIDEdevice should take intoaccountdecreasedmotor impairment,hearingand/orvisualimpairment.


5.2 Secondaryend-users

Thesecondaryend-userswhoparticipatedintheresearch,boththeinformalcarersaswellashealthcareprofessionals,allprovidecareathome.Thissectiondescribestheperspectiveofthesecondaryend-userstowardstheMedGUIDEsystem.

5.2.1 Theme:CharacteristicsPersonwithDementia(PwD)

5.2.1.1 Generalaspectsofthedisease

Thedailystructure,routineortimeconsciousnessislostduetothedementiasyndrome.ThemedicationadherenceisapeculiartopicbothforPwDsaswellasfornextofkin,becauseitisadailyrecurrenthassleand sometimes it endswith a confrontation. The secondary end-users group believes that ICT-basedcomputer assistance is difficult for PwDs to understand. Any system should take into account thepsychological,physicalandmentalcapacitiesofthePwDaswellasthedignityofthePwD(nottotreatoraddressthemasachild).Also,itisrelevanttomentionthatthePwDshavelowadaptivecapabilities.So,changesshouldbeadaptedtothis,e.g.whenthemedicationpackagechangestoanotherformorcolour.Professional:Oneoftheacceptedreasonsfornotchanging,isthatthiswillmakeproblemsforthepatient(e.g. bybeing confused that thepackageandpossiblyalso the tablets lookdifferentafter thegenericchange).”.

• Thesystemshouldtakeintoaccountthefunctionaldeclineandlossofmemoryfunctionduetothedementiasyndrome,PwDshavelowadaptivepossibilities;

• TheMedGUIDEtoolshouldbeeasytolearnandtouseanditshouldbeafluentprocess.

5.2.1.2 Impactdementiahasoninformalcarers

Furthermore,informalcarerswantedtogivethemessagethattheircareloadshouldbeconsideredaswell. Informalcarer:“mylifechangeddramaticallyafterthediagnosisofdementia”. InsomestadiaofdementiainformalcarershavetohelpthePwDwithalotofthings,forexampleremindthemwheretogoatwhichtime,butalsoremindthemtohavebreakfastandtaketheirmedication.ThesafetyofthePwDisalsoimportantanddependsontheinformalcarers,thereforetheyhavetobealertallthetime.Informalcarer:“Shedoesn’tknowwhenandwhatherhusbandwillforgetsoshehastobealertallthetime”. At the same time informal carers find the care very important, even if it influence their ownoccupations.Informalcarers:“ItakethePwDwithmetoeveryplace”and“Idonothaveanytimetovisitandcontactmyownsocialnetwork,andthatisregrettable”.ItwouldbehelpfulifMedGUIDEcansupporttheinformalcarer,bygivingremindersforexample.Butalsobygivingunderstandableinformationrelatedtothesyndromeforexamplemedication,medicationadherence,medicationside-effects,doctors’adviceandimportantcontactinformation.

• Thesystemmighthelpindecreasingthecareloadoftheinformalcarer;• Thesystemshouldgiveunderstandableinformationaboutmedicationmanagement;• ThesystemshouldremindPwDandinformalcarertotakemedicationortogotoanappointment.

5.2.1.3 MedicationadherenceofPwD

InformalcarersandcareprofessionalspointedoutonceagainthatPwDsdonotremembertotaketheirmedication and they do not understand the purpose of the medication. They said that repeatedautomatedprescriptionbythepharmacistdoesnotworkthatwellforPwDs,sincetheycannotcheckthePwD'shousestoknowifthemedicationistakenorthrownaway.


In addition, sometimes PwDs are unwilling to take theirmedication. They resist or have troublewithswallowingthemedicationortheywillkeeppillsstoredinthecavityoftheirmouth.TheeffectivenessofmedicationsforPwDsareaccordingtocareprofessionalsstillpartofscientificdebate.ThePwDsdonotnoticeorarenotawareofadverseeffectsexcept that informalcarersmentionthat theynoticedthatPwDswillfallasleep.Informalcarer:“shesometimessleepsduringlunchtimewhichissomethingthatshedidn’tusedtodo.”.

• The system should give or generate personal information about safe and secure medicationintake;takeintoaccountthatmedicationcanbetakenbutnotswallowed;

• The MedGUIDE device should explain the PwDs and their carer the effectiveness of themedicationthatareprescribedtothem.

5.2.2 Theme:Communicationaspect:Medicationadherence

5.2.2.1 Feedbackonmedicationadherence

Professionalswhowereinterviewedsaidthattheyhaveno"clueof"orroutinesforhowtomotivatePwDstoadheretotheirmedication.Thisproblemshouldbesubjectofaliteraturesearchonobjectiveproveneffectiveinterventions.ItisrelevantthatadevelopedsystemhasanoptiontogivefeedbacktoPwDsorremindthemwhenrelevantmedicationismissing.Thismessageshouldstimulateadherence.So,itshouldnotmerelybeasoundorsign.Itshouldbeamotivationalmessage,forexampleavideoofanextofkinisrecordedandplayedbythesystemtoremindthePwDthattheyhavetotakemedication.Informalcarer:“Orifthereminderisavoicemessage,canitberecordedbythegrandchildrenorsomethinglikethat?”.Professionalcarersuggestitisaboutpositivehealth.Additionally,itwouldbehelpfulifpositivefeedbackonadherenceisgiventothepatient.Thereshouldbearewardsystemofsomekind.So,ifmedicationistakenaccording to theprescription, thesystemgivesa rewardor theavatar/widget ispositive (e.g.asmiley).

• MedGUIDEshouldprovidepositivefeedbackandmotivereminderstopromoteadherence;• MedGUIDE should support the care network of the PwD to provide positive feedback and

motivatereminderstopromoteadherenceandcontributetoamanageablecareload;• MedGUIDEshouldsupportthePwDwithpositivefeedbacktosupporttheirdailyroutines.

5.2.2.2 Improveknowledgeonmedicationandrecentdevelopmentinonlineassistancetools

Informalcarer:“Abetterfocusonmedication,howdrugsworkanddialoguewiththeGPwouldhavebeenuseful.”ForinformalcarerslivingwithaPwDitisusefultoaddinformationinthesystemaboutrecentdevelopmentsinmedication,ICT(e.g.anewapporanewsupporttool)andhealthcare.InthiswaytheycankeepthePwDinformed.CounsellingtoidentifyindividualreasonsforwhyPwDdonotadheretotheirmedication isnecessary inthemanagementofdementia.RegularmeetingsbytheprofessionaltotalkaboutmedicationadherencewiththePwDandinformalcarershouldbescheduledandcouldbeonline.Thereshouldbeaccesstoadatabase2aboutnewmedicinesandaboutpossiblesideeffectsofmedication.

• Informationof/andreportsononlinecounsellingcouldbesharedwiththecarenetworkusingMedGUIDE;

2Inallcountriesprofessionals(e.g.GPsandspecialisat)usedmorethenonedatabaseonmedicineinteractions.


• Information to the user should be provided about aspects on medication effects as well asmedicationadministration.Mentionedwas:videos,photosorothercommunicativematerialscanbeusedaswell.

5.2.2.3 Medicationintakeskills

Professionals also pointed out to take into account problems that PwDsmight havewithmedicationintake,forexampleswallowing;thesizeorcolouroftheampuleandintakerestrictions.ArePwDsabletogrindmedication?Thesystemmightgiveinformationorsupportinthisandenhancethelevelofsecureandsafemedicationintakeskillsandcontributetohealthliteracylevel.

• Provideinformationaboutmedicationintake;showinstructionsofmedicationintake.

5.2.3 Theme:Medicationmanagement

Moreattentionshouldbegiventochangesinmedicationtypeorprescriptionandformedicationreviews.Theend-usersgroup,formalandinformalcaregivers,alsomentionedthatmedicationshouldbestoredatthesameplace,becauseinthiswaymedicationiseasytofindbyeveryone.Medicationintakeshouldbebuiltarounddailyroutinesfortimeofintake.Mentionedbyaprofessionalcarer:“Alsonicetohaveisachecklist for intake ofmedication and or provide PwDswith plasters ofmedication,when possible.”.Sometimesprofessionalsdonotknowwhetheraspecificmedicationhasbeentakenornot,thenadoseisgiventwicejusttobesure(90%ofthemedicationistakenonceaday).Communitynursescouldassistwiththemedicationintake.

• MedGUIDEshould support thePwD to take thecorrectmedicationdosesandpreventdoubledoses;

• Thesystemshouldbelinkedtoadailyroutine,suchasreadingthenewspaper;• The system should provide information about possible side-effects to medication reviewers,

homecarenursesandinformalcaregivers.

5.2.4 Theme:Technologicalpreferencesanddislikes

This themewasdiscussedbyusing “talking sheets”. The talking sheetswereexamplesofapplicationsand/orsystemswhicharealreadyusedforsupportingthemedicationadherence.SeealsotheresearchprotocolinAppendix1.

5.2.4.1 Generalsystem-settings

Amajor finding from the interviews is that the system should be connectable to other professionalsystemsinhomecare,generalpractitionersorpharmacyorganisation.Thistoenhancetheacceptanceofthesystembecauseprofessionalsalreadyhavetodealwithmultiple(IT)systems.Therewillbedifferencesin directed by national privacy and ethically legislations and practical opportunities to do this asprofessionalssystemsareoftenclosedandsecured.

ThesystemshouldbebasedonthecommentsonthetalkingsheetsasshowninAppendix1:

• Theuserinterfaceelements(suchassymbolsandbuttons),shouldbeeasilyunderstandable;• TheMedGUIDEplatformshouldprovideeasyaccessforuserswithalllevelofICT-skills;• TheMEDGUIDEuserinterfaceshouldbeadaptedbasedonthedifferenttargetgroups;• The system must follow accepted and common guidelines and standards in Europe on

accessibility;theuserinterfacecontrastandfontsizesusedmustbeadaptedtoaPwD;


• Professionalsshouldbeabletoaccessonlytheneededinformation,andnottobeoverloadedwithinformation.

Anothermajorpointofattentionisthatallpeople(personalcontactsandprofessionals)inthecircleoftrustofthePwDsmustusethesamedevice/ortool.Pill-rollsoragendaappsdonotapplyverywellforthegroupofPwDsaccordingthesecondarytargetgroup.

• TheMedGUIDEplatformshouldtakeintoaccountthelimitationsin(functional)declineduetothedementiasyndrome

5.2.4.2 Specificfeatures/suggestionsMedGuidesystem

The secondary end-users group (informal caregivers and healthcare professionals) also reflected onopportunitiesfornewfunctionsfortheMedGUIDEplatform.Theymentionedthatsettingprioritiesorahierarchyinthesignals/feedbacktotakemedicationwillbegoodtohave,inordertobeabletoidentifywhichmedicationisthemosturgentandwhichofthemcanbeeventuallymissed.Moreover,themeansforadherencemonitoring,e.g.scanning-thebarcodeofaBaxter-rollatmomentofintake(medicationgivenbyprofessional),mightimprovethemedicationadherence.TheoptionsofidentifyingthepatientbythesystemandarrangingtelephonecallsbyfamilycarerstoremindthePwDaboutthemedicationintakeshouldbeprovided.Thisisrelevantmainlyintheevening.

• Thesystemshouldadapt to thedaily routinesofPwDs.Addor integratepersonalizedstorageroutineortrickstothesystemwhicharepersonalized;

• Reminders for medication intake should be visualized as clear as possible. By for example,presentingthetimeofmedicationintakeinbiglettersorusingaclockvisualization,andthedayoftheweekshouldpresented,notthespecificdate;

• Notificationssenttoprofessionalsaboutmissedmedicationshouldonlybesendincasesofcrucialmedicationinordertopreventanoverloadintheirwork-tasks;

• Healthcareprofessionalsshouldbeabletoexchangeandaddpracticalknowledgeandskillswitheachotherthroughthe‘’onlinetool’’,whichhavetobeefficientlyforthem(minimumextraeffortandtimerequired);

• TheMedGUIDE tool shouldcontribute to support communicationbetweencareprofessionals,PwDandtheircarenetwork.Havetobesimple,quicklydoneandnotinvasiveinthedailymainwork;

• Ane-learningmodule for professionals regarding the communicatewithPwDs to support themedicationadherenceisgoodtohave.

From the interviews with the formal carers we found that the system should capture monitoringmovementoractivityviasensorssuchas:

• Goingoutetc.;• Stayinginbedlongerthanregular;• Sensorinachairtomonitorsitting;• Sensorinthedoortellingyouhowlateitiswhenleavingthehouse;• Sensorinthebathroomdoortomonitortoiletvisits;PwDforgettogotothetoilet,orusingthe

toiletveryoften;• Sensorsinthekitchenandaroundtherefrigeratorandwaterfaucet,providinginformationabout

theprobabilityofmedicinein-take.


Professionalsstatedthatthesystemshouldalsoprovidethepossibilitytomonitor(side-)effectsofthemedication, forexample levelofpainorchanges inmood. It is relevant to receive feedback fromthepatientabouttheirreal-timecondition(takinginaccounttheconditionofthePwD).Themonitoringdatacollectedofthedailyactivitiesoftheseniormustbesharedwithinformalcaregiver,sothathe/shecanadd extra information about it (e.g. change of medication). “For evaluating effect of medication fordementiainformationfromthenextofkinisimportant.”Thesystemshouldbealignedwiththeactivitiespeopledidbeforethediagnosisofdementia.

• MedGUIDEshouldsupportinformalcaregiverstoenrichthesensordatawithself-reporteddata;• MedGUIDEshouldmonitorpossible(side-)effectofthemedication;• MedGUIDE should be aligned with people’s daily routines and should not give additional or

conflictingactivities.

Thesecondarygroups,inthiscasetheprofessionals,hadseriousdoubtsorquestionsaboutwhethertheMedGUIDEsystemwillfittoskillsandlevelofadaptabilityofPwDs.Acasestudyofelectronicpillboxesshowed that itwas toocomplicated for them touse. Furthermore, their skills for (instrumental)dailyactivities such as dialling,making an appointmentor getting to the grocerywill deteriorate. Thus theMedGUIDEsystemshouldbeassimpleaspossibletousebythePwD.

5.3 Tertiaryend-users

Pharmacist anddoctors (mainlyGPs)havebeen interviewed inNorway, TheNetherlands andCyprus.National differences occur in the type of professionals involved, the health care system and in thesupportingsystemsusedinthetreatmentofPwDs,whicharementionedintherelevantparagraphs.Maintopics in the interviewsaremonitoringmedicationadherence,counsellingandcommunication,onlinetoolsandmedicationevaluation.

5.3.1 Monitoringmedicationadherence

Medication adherence and understanding of side-effects are difficult for PwDs. GPs and pharmacistsmentionedtwocategoriesofPwDs:thosewhoarewillingtotaketheirmedicationbutarenotableto,andthosewhoarenegativetowardstakingmedication.ThemainproblemsforPwDsinthefirstcategoryare:forgettingdosages,takingdoubledosages,havingtroublefollowingintakeinstructionsandreadingtheinstructiononthelabel.EspeciallychangesinregimemakeitmoredifficultforthiscategoryofPwDstoadheretotheirmedication.Changesinmedicationordosageregimethencausenoncompliance.

PwDsinthesecondcategorydonotacknowledgetheirillnessandrefusetreatmentbecauseofideologicalreasons.Theydonotbelieveintheeffectofthemedication,theyfearthesideeffects,orsimplydonotwanttotakethemedicationbecausetheydon’tseethemselvesas'ill'.

GPs andpharmacistsmentioned these as themain causes fornotbeing able to take themedication:cognitivedisorder, lossoforientation,nothavingagoodoverviewof themedication intakeschedule.PwDsdistrustchangesandcommunicatelessbecausetheyhavelessoverviewoftheirlives.Therefore,changesinmedication-suchasanotherbrandofgenericmedication-areaproblemandPwDswilloftenavoidtocommunicatetheirproblemswithmedicationorsyndromewiththeirGP.ForaPwDitisdifficulttoindicateproblemstotheGPthatarerelatedtosideeffectsofthemedication,ortosymptomscausedbylackingofpropermedication,suchaspain.


It is very rare that patients - even in early stages of dementia - are able to take theirmedication bythemselves;theirinformalorformalcaregiversareusuallyresponsibletogivethemtheirmedication.Thepatientscannotunderstandtheirsituationandwhytheyshouldtakethemedication.

• ThesystemshouldsupportthePwDandhis/hercaretakersintakingtherightdosage,attherighttime,intherightway,sincePwDsexperienceproblemsinthisarea;

• Thesystemshouldaddresstheinformalandformalcaregiver(aswellasthePwD)withregardtomedication adherence, since they play an important role in helping the PwD adhere to hismedication;

• Thesystemcouldhaveanaddedvaluewhensupportingchangesinmedicationregime.

5.3.2 MonitoringmedicationadherencebytheGP

WhenaskedaboutmotivatingthePwDtomedicationadherence,mostGPsrefertotheformalcaregiver.WhentheydocontactthePwDthemselves,GPsstatedthatmotivatingthePwDtomedicationadherenceisdifficult.GPsthenmainlyaddresstheinformalorformalcaregiverofthePwD,whiletheystilltrytoestablishagoodrelationshipwiththePwDandtheinformalcaregiver.

FortheGPtimeisalimitingfactor.OneofthereasonsisbecausePwDsalreadyconsumealotoftimeontheirotherdiagnosis.Theopiniononwhethera feedbacksystemformedicationadherencewouldbehelpfulvariesamongtheGPs. Itshould inanywaynotconsumetoomuchtime.SomeGPsprefertheformalcaregivertoreceivethisfeedback.

• The system should aim primarily at supporting the practical problems with medicationadherence,sincethemotivationalproblemsaredifficult tosolvebyanelectronicsystem,butneedpersonalattentionfromtheGPandformalcaregiver;

• ThesystemshouldnotcosttheGPtoomuchtime,sincetheystatethattimeisverylimited;• ItshouldbecleartotheGPswhattheadvantageofthesystemisforthem,sincetheytendto

refertotheformalcaregiverforthementionedtasks.

5.3.3 Monitoringmedicationadherencebythepharmacy

The pharmacy systems in The Netherlands, Norway and Cyprus are advanced and provide a tool forevaluation of medication adherence. The pharmacy system indicates when the PwD acquires hismedicationtoosoonortoolate.Thisishelpfulbutdoesnotprovideenoughdetailedinformation,becauseacquiringmedicationisnotthesameasactuallytakingthemedication.InTheNetherlandsadherenceisthereforesometimesevaluatedthroughahomevisitbythepharmacist.

Whenpossible, thepharmacy can simplify themedication regimebyplanning themedicationon lessadministeringmoments.AsallchangesaredelicateforthePwDs,thisisnotalwaysadvisable.

IntheNetherlands,intakeregimesareoftensimplifiedbyintroducingmedicationbagsonaroll(suchasBaxter).Thisisonlypossibleforpillsandcapsules,notforcrèmesandpotionsetc.

• Thesystemshouldbeabletoexchangeinformationwith-orbefedby-thepharmacysystem,withregardtomedicationadherenceinformationofthePwD;

• Thesystemshouldbeabletoprovidemoredetailedinformationaboutmedicationadherencethanthepharmacysystem.ForexamplebycollectingdatafromthePwD.

5.3.4 Currentsupporttoolsformedicationadherence

In Cyprus,GPs and pharmacists do not use tools formedication adherence other than the pharmacysystemmentionedabove,butareenthusiastictotrysuchtoolswhenavailable.InTheNetherlandsand


Norway, GPs and pharmacists mentioned many support tools for medication adherence. There areelectronic medication dispensers, medication alarms and many different apps, used by the informalcaregiver.

5.3.4.1 Norway

In Norway the medication dispenser Pilly has been purchased by a number municipals. It is also aregistered product in the national database of assistive technologies3. Another product, Evondos4, iscurrently gainingmarket shares and is part of the portfolio of one of the largest suppliers of healthtechnologysolutionstomunicipalities:Telenor.Thisdispenseralsoseemstohaveadesignthatismucheasier for peoplewith cognitive decline to handle than the pill carousels. The app ”MyMedicine” isdevelopedforpatientswithParkinsondisease. In theapp,namesofmedicinesorbarcodesshouldbeentered,thereisalinktothedatabasewithinformationaboutapproveddrugsinNorway(FEST),sothate.g.warningsforaspecificmedicinescanbedisplayedintheapp.Theappcontainsadrug listforthepatientwithcorrectstrengths,dosesandwaysofadministration,informationaboutside-effects,warningsfromtheNorwegianDrugAuthority,andinteractionsbetweendrugsonthedruglist.Themostimportantfeatureisprobablythatremindersformedicationintakepopuponthedevice(mobilephoneortablet)eveniftheappisnotopen(likecalendarreminders).Dosestakenshouldbetickedoff.Hencehistoricaldataabouttakenmedicineanddeviations(atleastdosesnottickedoff)canbeeasilyseen.

AGPusesacommunicationtoolwiththehomenursesystem,calledPLO.Itisintegratedinthejournalsystem.Thehomenurseswill sendhimworries for theusersby thissystem.Hecanreadandanswermessagesintheendoftheday,andthehomenursesreadhismessagesthenextday.SometimestheGPthinkspeoplearesendinghimtoomangemessages.

5.3.4.2 TheNetherlands

InTheNetherlandsmanysystemsexist forhelping the formaland informalcaregiverwithmedicationadherence.ForexampletheMedApp5,whichprovidesinformationaboutthemedication-afterscanningit-andcontainsamedicationalarm.MedAppcanbelinkedtothepharmacysystem,whichallowsthePwDor informalcaregivertoorderthemedicationatthepharmacy.ThepharmacycanalsosignalthePwDautomaticallywhenthemedicationshouldbecollected.MedAppisusableonlyforpersonsinaveryearlystageofdementiaorfortheinformalcaregiversofthePwD.

ThemedicationdispenserMedido6canbeusedforpeoplewhohavetroubletakingtherightmedicationattherighttime.Thedispenserreleasesamedicationbagwiththenecessarymedicationattheindicatedmomentandgivesasignal.Italsocontainsacommunicationbutton.TheMedidoissuitableonlyforveryfewPwDs,becauseitrequiresalreadyquitesomeskills.

A GPmentioned eGPO/Congredi7, an online systemwhich facilitatesmaking an online care plan andcommunicateaboutthegoalsinthisplanwithotherprofessionals.Thepharmacistisnotinvolvedinthissystem. Signals from the PwD go to a nurse (nurse practitioner, related to the GP), who selects the

3www.hjelpemiddeldatabasen.no4www.evondos.com/service/evondos-e300-automatic-medicine-dispenser/5https://medapp.nu/en/6http://www.medido.philips.nl/7http://www.congredi.org/


informationfortheGP.ThissavestheGPstime,whichislimitedforthem.Theyaremotivatedtousethissystem,becauseitgivesthemagoodviewoftheirpatientpopulation.

OthertechnologicalsupportsmentionedareaTomTomona‘wheeler’,doorsensors,bedsensors,etc.

• AsmedicationdispensersseemtobeofuseforonlyaverysmallpartofthePwD,weshouldnotfocustoomuchonthisdevice.

• SinceGPs andpharmacists use huge closed systemswith very high security,MedGUIDEmustconsiderpossibleinteroperabilitybystandardsusage.MedGUIDEshouldbeabletointegratewithsolutionsfromleadingexistingprovidersofdoctorandpharmacysystems,careappsetc.TheGPorpharmacistwillnotuseaseparatesystemvoorthePwD.

• TheusedsystemsinatleastNorwayandTheNetherlandsalreadycontaininformationonahighlevel on effects, side effects, interactions and contraindications of medication. It would beefficientifthesystemcouldconnecttothisinformation.

• Allpeople-personalcontactsandprofessionals-inthecircleoftrustofthePwDsmustusethesamedeviceortool,orusetoolsthatautomaticallysynchronizeinformation.

5.3.5 Communicationandcounselling

In The Netherlands and Norway, the GPs and pharmacists discussed about the different types ofprofessionalcaregiverswhocommunicateorprovidecounsellingwithPwDs.InCyprustheapproachoftheGPandpharmacistcommunicatingwiththePwDandinformalcaretakerwasdiscussed.

5.3.5.1 TheNetherlands

GPs and pharmacists name the nurse practitioner and the home care nurse as persons that play animportantroleinprovidingcounsellingtothePwD.Theyoftencommunicateviatheinformalcaregiver.Alsotherearedementianursesanddementiacasemanagerswhoformaspecialteaminthehomecareorganisation.ThenursepractitionerrolegraduallybecomesmoreimportantinthecommunicationwiththePwD.SheisanursewhoisconnectedtotheGPpractise.ThenursepractitionersometimesvisitsthePwDathomeandadvisesaboutmedicationadherence.ThedegreeofsupportinmedicationadherenceneededisdeterminedbyvisitingthePwDandtheinformalcaregiver.AGPstates:"ThebestwaytodothisistoletthePwDperformthenecessaryactionshimselfandseewhichsupportisneeded."

Whenhomecarenursingornursepractitionersarenotinvolved,manysignalsofadversedrugeffectsdonotreachtheGP.Itdependsontheassertivenessoftheinformalcaregiverandthepharmacist,andthetimetheGPhasandtheattentionheorshepaystothePwD.

GPsemphasize that thecounsellingprocesswithPwDshas tobecustom-madeforevery individual. Itrequiresanopenmind.Easyaccesstohomecarenursesistherebyneeded.

• Inthesystem,thehomecarenurse-orotherprofessionalinvolvedineachcountry-shouldplayanimportantroleinthecommunicationofsignalsofmedicationadherence,sideeffectetc.

• Whenhomecarenursingisnotavailable,theroleoftheinformalcaregiverincommunicatingwillbemoreimportantinthesystem.

5.3.5.2 Norway

GPs indicate that they do not communicate enough with PwDs about medication adherence. Theydelegatethiscommunicationtotheinformalcaregiverortothehomecarenursingsystem.ThehomecarenursesshouldfollowupmedicationadherenceasGPshavetoolittletime.AGPdoubtsifeveryhomecarenurseissuitablytrainedforthis.


AGPstatesaboutmedicationadherence:"Iusuallysaytomypatients/theircarersthatwhenwedecidetogoa'medicine-path'weneedtostickwithit."

• ThehomecarenursesshouldfiltersignalsfortheGPandpharmacist,tosavethemtime.• Propertrainingshouldbegiventothehomecarenursesaboutmedicationadherence,signalsof

problemswithmedicationsuchassideeffects.

5.3.5.3 Cyprus

The healthcare professionals have regular contact with the patients and their informal caregiversregardingtheirmedication,sideeffectsandanychangesthatmayoccur.Theprofessionalsreceivemostinformation through their discussion with the informal caregivers. However, they highlighted theimportanceofshowingempathy,respectandcompassiontoPwDsoastodevelopagoodrelationshipandhavegoodcommunicationwiththem.Thisusuallyhelpswhenthepatientsarenegativetowardstheprescribedmedication.

• Establishing good contact between professionals and PwD remains essential for medicationadherence.Thesystemshouldsupportthiscontact.

5.3.6 Talkingsheets

In the interviews with the tertiary end-users group several ‘’talking sheets’’ with existing electronicmedicationtoolsarediscussed.

GPsandpharmacistsstatedthefollowingafterdiscussingthetalkingsheets:

• Anelectronicdevicecannotandshouldnotreplacepersonalcontact,sincePwDsareoftenlonelyandneedpersonalcontact;

• FeedinginformationtoanelectronictoolcanbeconfrontingforaPwD,becausehenoticeswhathedoesn'tknowanymore;

• Thediscussedtoolsarealreadyabit toocomplicated foraPwD.Learningnewaspects isverydifficultforthem.OftentheinformalcaregiverwillusethetoolinsteadofthePwD;

• PillreminderswillhelpthePwDstotaketheirmedicationbythemselves;• The toolwillmaybe suit the younger generations better than the current PwDs, because the

formerwillhavemoreexperiencewithsmartphonesandtablets;• The electronic medication dispenser does not guarantee that the PwD will actually take its

medicationafterthereleaseofthesachet;• TheelectronicmedicationdispenserPillyhadatoosmalldigitalscreenandshouldgiveamessage

like"It'stimetotakeyourmedicine";• AconsequenceofusingMedGUIDEwillprobablybethattheGPandpharmacistaremoreinvolved

withthehomecarenurse.Someconsiderthisastimeconsumingandarisk,someothersconsideritaspositivesinceitprovidesabetterviewonthePwDs.

ThefollowingspecificsforanonlinetoolMedGUIDEweresuggestedbytheinterviewedpharmacistsandGPs:

• Thetoolhastobelargerthanasmartphone, likeatablet.ManyPwDshaveproblemsusingamobilephone;

• Detailsonthescreenhavetobelargeandstraightforward;• Itisimportanttotestifsuchatoolforimprovingmedicationadherencereallyworksfortheuser.


• Theonlinetoolshouldhaveasignalfunction.SignalscanindicatetoformalcaregiversthatthingsgowrongwiththePwD.Itshouldalsoprovideinformationandhaveanalarmfunction;

• Thetoolshouldgiveamessagelike"It'stimetotakeyourmedicine".Thismessageshouldrepeatitselfuntilthepatientphysicallyturnsthealarmoff;

• It isimportantthatthePwDhimselfcanseetheadvantageoftheonlinetool.”What’sinitforme?";

• ThetoolshouldbeintegratedwithothersystemsandshouldnotcosttheGPmuchtime;• ThetoolshouldconnecttotheactivitiesofthePwD,suchasforexamplethetelevision;• Mindprivacy;• Thetoolcannotreplacefacetofacecontact,itcanselectPwDswhoneedextracare;• Thetoolshouldprovideinformationforthepharmacistaboutwhoisinvolvedinthecareofthe

PwD;• Thetoolshouldnamethedaysoftheweek,notthedata.Oruseacalendar;• Usecoloursandpicturesinsteadoftext;• Insert elements that enable GPs and pharmacists to communicate with other professionals

involved in their cases aswell as enhance their knowledgeand skills through theplatformbyexchangingknowledge.

5.3.7 Medicationevaluation

Medication evaluation is an everyday process of signalling the effects of and problems with themedication.Inadditionthemedicationisevaluatedatfixedmoments;themedicationreview.

5.3.7.1 MedicationreviewintheNetherlands

InTheNetherlands,medicationreviewsareperformedonceayearbypharmacistandGPinaccordancewiththe 'Multidisciplinaryguidelinepolypharmacy for theelderly'. Inclusioncriteriaarepolypharmacy(fiveormoremedicines),age(65+)andriskfactors,suchascardiovasculardiseases.Onlyasmallamountof patients is evaluated. The PwD is not often chosen as a group at risk, although 'problems withorganizing' is an official criteria for a medication review. The nurse practitioner often has a role inorganisingthemedicationreviews.

In The Netherlands, most common changes in a review are discontinuation of medication, addingvitamins,andobtainingkidneyandliverfunctionsformthelabatoryforadjustingdosageregimes.

The GPwill notice interactions and contra indications first, the pharmacist is a ‘back up’ and has anoverviewofallprescribedmedication,includingspecialistmedication.

InTheNetherlandsaswellasinNorwaydruginteractionsarepreventedbyasophisticatedautomatedsystemforpharmacistsandphysicians.

• The tool could support the medication review by making the review easier to organise. Forexamplesupporttheplanningofthemeetings,theexchangeofthemedicationanalysisandthesuggestionsformedicationadjustmentsbythepharmacist,andprovidinganoverviewofthestateofaffairs.

• Information on side effects, drug interactions and contra-indications is not necessary toincorporateinthesystemforTheNetherlandsandNorway,sincethisisalreadyprovidedforincurrentsystems.

• ThetoolshouldbeabletoconnectwiththecurrentGPandpharmacistonlineexpertsystems.


5.3.7.2 MedicationreviewinNorway

In Norway the Norwegian Directorate of Health has made medication review guidelines for healthpersonnel. The regulations forGPs say thatGPs shouldensuremedication reviews aredone for theirpatientsusingfourormoremedicineswhenmedicallynecessary.GPsindicatethattheydonotperformmedicationreviewsoften,sincetheycostalotoftime.Theyperformthemedicationreviewsthemselves.Mosttimeisusedforupdatingdruglistsintheirjournalsystemofpatientsaccordingtohospitaldischargesummaries.Heisalsodoingdrugreviewsoninquiriesfromnextofkinsorhomenurses.ThereisatariffforGPsthatcanbeusedtwiceayearfordrugreviewsofeachpatientaccordingtotheregulations.

• Inadditiontothebulletsabove,thetoolshouldsupportanup-to-datemedicationoverview,sinceacquiringthiscoststheGPalotoftime.

5.3.7.3 Symptoms

The symptomsof dementia and/orAlzheimer are separated in three categories:mental, physical andpsychological.

Mentalsymptoms:increasedaggressivenessduetothefactthattheycannotcommunicateandspeakastheyusedto;theirsyntaxandvocabularyisdecreased,subsequently,itmakesitdifficultforotherpeopletounderstandthemandtheygetfrustrated,disorientation,sometimestheyhaveillusions.

Physical:disorderinbowelmovement,urineoutput,appetite,andsleep.

Psychological:psychosis,schizophreniasymptoms,suchasinabilitytositstill,logorrhea,decrease/lossoffeelingofself-preservation–decrease/lossfeelingofsenseofselfcareandpersonalcare,andchangesoftheirhabitsduetolossofindependency.

WhenPwDdonotadheretothemedicationgiven(eitheriftheytakemoreorlessthantheprescribedmedication),thentheyhaveoneormoreofthefollowingsymptoms:confused,aggression,relapseandchangesintheirbehaviour.

5.3.7.4 Sideeffects

Symptomslikenausea,abdominalpainanddiarrheacanbeadverseeffectsofcholineesteraseinhibitors.Thiscanleadtoreducedappetiteandreducedfoodintake.Exelonadhesiveplastercangiveeczema.Theoneswhocandiscoversuchsymptomsarethehomenurses.AriceptandExelonaregivenintheeveningtoavoidgastrointestinaladverseeffects.ExeloncanworsenParkinsondisease.

AGPstates:"WhenaPwDexperiencesdrowsiness,Ialwaysblamethepillsfirst."

GPs and pharmacists mention the following side effects that are the most important to discover:unsteadiness/falling, sideeffectson cognitive functions andonmobility.Additionallymentioned side-effectsaredrymouth,obstipation,dizziness,nausea,lowbloodpressure(dropinbloodpressure).AlotofPwDstakemanydifferentmedicaments,soit'sdifficulttosay.

They mention the following side effects that could be monitored and discovered by sensors of theMedGUIDE-system:falling,dizziness,restlessnessatnight,frequentvisitstothetoiletduringnight,andhowlongtheuserisstayinginhis/herbed.

• Thetoolshouldbeabletodiscoverfalling,dizziness,restlessnessatnight,frequentvisitstothetoiletduringnight,andhowlongtheuserisstayinginhis/herbed.


5.3.7.5 Symptomorsideeffect?

AllGPsandpharmacistsstatedthatitisverydifficulttodistinguishbetweensymptomsandsideeffects.IfaPwDsitsalot,isthiscausedbydizziness?Oruncertaintyduetoariskoffalling?Subsequentquestionsarewhetherare symptomsof thediseaseor sideeffectsof themedication? If aPwDhas swallowingproblems,isthisduetoherantipsychoticsorissheinalatestadiumofAlzheimers?

Symptomsofwhich it isdifficulttodistinguishbetweenadverseeffectsofdrugsorprogressionofthediseaseare,accordingtotheinterviewedGPsandpharmacists:delirium,anticholinergicsideeffects,anddeteriorationofcognition,moodchanges,tiredness,aggressiveness,dizziness,abdominalpainorreducedappetite.

Theonlywaytoknowwhatthecauseofthesignal istostopthemedicationandseeifthesideeffectstops.Aphysician states:"I alwaysblame thepills first. Then I lookat thedisease." It is veryhard todistinguishbetweensideeffectanddiseasewithanonlinetool.Maybechangesinbaseline,combinedwithinformationofthemomentamedicationwasstartedcanbeuseful.

• Thetoolshouldbeabletomonitorsideeffectonatime-line.ThiswayGPscananalyseifasideeffecthasstartedatthesametimeasnewlyprescribedmedication.

• Thetoolshouldprovideabaselineforactivitieslikesleep,movement,eatingpatternandtoiletvisits,sothatachangeinbaselinecanbedetected.

• TherewillalwaysbeaneedforaGPand/orpharmacisttoanalysethesignalsandchanges.Eventhenitwillbedifficulttodistinguishbetweensideeffectandsymptomsofthedisease.

5.3.7.6 DiscontinuationofmedicationwithPwDs

"Youdon’tstopmedicaltreatment,youstopgivingmedication",aGPstates.InTheNetherlandsthereareguidelinesvoordiscontinuationof rivastigmine,amedicine fordementia.According toguidelines,rivastigmine should be stopped when no effect is observed any more. Often this is when a PwD isadministeredinanursinghome.Also,whennoimprovementisseen,themedicationisoftenstopped.ThereismoreinformationaboutdiscontinuationinDutchguidelines(Start/Stopcriteria,Beerscriteria,Verenso-guidelines).

Norwegian guidelines for discontinuation of dementiamedication are not known. Sometimes the GPresidesthedose.


5.4 Technologicalaspects

Table3belowshowsanoverviewofthetechnologicalaspectssuggestedintheinterviews.

Table3:SpecificationsMedGUIDESystemgeneralGetfamiliarwithdailyroutinestotrigger Only in cases ofmissing crucialmedication should the

systemsendanotificationtotheprofessionalMustbeincorporateindailyroutinesofPwD Abletoexchangeandaddpracticalknowledgeandskills

witheachotherbyprofessionalsMusthaveapermanentplace,justlikemedication Support communication between care professionals,

PwDandcarenetworkPossibilitytoaddandtoshareself-reportedinformation e-Learning module for professionals about how to

communicatewithPwDaboute.g.medicationadherenceDefinewhohasaccesstothepersonaldata CapturemonitoringmovementoractivityviasensorsTakeintoaccountdecreasedmotorimpairment,hearingand/orvisualimpairment

Monitorpossible(side-)effectsofmedication

Takeintoaccountfunctionaldecline,lossofmemoryandlowadaptivepossibilities

Alignedwithpeople’sdailyroutinesandshouldnotgiveadditionalorconflictingactivities

Learningcurveshouldbeaslowaspossible,easeoflearn Able to exchange information by other systems ifpossible

Leadtoadecreaseofcareloadoftheinformalcarer Allpeople inthecarenetworkmustbeabletousethesamesystem

Remindersfore.g.medicationintakeandappointments ShouldnotreplacepersonalcontactProvidepositive feedback andmotivating reminders topromoteadherence

SupportthePwDbymentionwhatdayitis

Support PwD with positive feedback to support theirdailyroutines

Supportthemedicationreview,forexamplesupporttheplanning of meetings and exchange of medicationanalysis

Possibilitytoshareinformationand/orreportsononlinecounselling

Monitorside-effectonatime-line

Support thePwD to take the correctmedicationdosesandpreventdoubledoses

Beadaptbasedonthedifferenttargetgroups

Userinterfaceshouldbeeasilyunderstandable HighaccessibilityProvideeasyaccessforuserwithallevelofICT-skills Good to have priorities or a hierarchy in the

signals/feedbacktotakemedicationSysteminformationProvide information about aspects of medication,medicationeffectsandmedicationadministration

Provide information about side-effect to medicationreviewers,homecarenursesandinformalcarers

Giveinformationaboutchangesinmedication(e.g.type,dose,colourorshape)

Remindersofmedicationintakeshouldmevisualizedasclearaspossible

Provideinformationaboutside-oradverseeffects Informationaboutpersonal informationaboutsafeandsecuremedicationintake

Information should be accessible for all users with alllevelsofhealthliteracy

Describe the effectiveness of the medication that areprescribed

Introduction and instruction on the interaction withMedGUIDE

Checklistforintakemedicationorprovidee.g.plasters

Information about recent developments inmedication,ICTandhealthcare


6 Discussion

Thereport includesthevoiceofPwDs livingaloneathomeorwithapartner.Thefocus is laidonthisgroupwhichistryingtoage-in-placewithdementia.Thedementiasyndromehassimilarsymptomsforallandlimitsapersoninthesameway.ThefindingsdidshowthatthePwDshaveingeneralafixeddailystructureandthatmedication intake isaroundthemeals.Findingshoweverdidnotreveal,all thoughexpected,anyculturalorregional(EU)differences.Thefindingswereretrievedinthe(group)interviewswithPwDsandvia the interviewswith the informalcarers.PwDand informalcaregivers stated in theinterviewsthatthePwDthemselvesdonotknowwhichmedicationtheyuseandhavedifficultyenhancingthemedicationregime.Theyrelymostlyontheinformalcarerfortheseroutinesandsafetyofintake.Theinformal caregivers do see opportunities for the MedGUIDE system, however they are not all thatexperiencedinusingICTandaddresstheoptiontomakeiteasilyaccessibleforthePwDandtheirinformalcarerandtakingnoticethatthePwDisaddressedrespectfullyandresponsivetoPwDsneedsandvalues.

Findingsretrievedfromtheinterviewswithcareprofessionalsandtertiaryend-usersweremostlyrelatedto the dementia syndrome symptoms and how these limits the functioning of the PwDs. Also theoccurrence of side-effects and difficulties with the medication-management were mentioned. Theinterviews with the tertiary end-users group provided similar information when compared to thesecondaryusersgroup.

Therequirementsareastarting-pointforthedesignphase.ThewayrequirementswillbeincorporatedintheMedGUIDEsystemispartofthenextphases;decisionsneedtobemakeaboutthesystem,forinstancehowthesuggestede-learningmoduleshouldlooklike(bookletornetbasedinformation)andthecontentforthedifferentend-users.

In these interviews, the issues about medication management by the health care professionals andpharmacistswerenotaddressedasexpected.MainconclusionisthatthereisnonationalevidencebasedguidelineonmedicationmanagementinPwDandprofessionalshavenoideahowtomotivatepatientstoenhanceadherencetomedication.Thiscouldbecausedbythefactthatthefocusinthissub-taskwasonusers-needs.Itisexpectedthatmoreinsightaboutmedicationmanagementissueinearlydementiacarewillbeaddressedintasks2.3to2.5.However,thecombinationofinterviewsfromthreedifferentgroupsnamely,primary,secondaryandtertiaryend-usersgiveenricheddataandarealsoverymuchalignedwithfindings from studies about aging-in-place with dementia8. Furthermore, in most publications aboutpersonswithdementia,thefindingsofresearchersorothersaregivenaboutpreferencesanddislikesofPwDs concerning the use of an electronic or ICT system. One of the exceptions in this study is thedevelopmentofawebtoolforaging-in-placeforPwDs9.

Apracticallessonlearnedisthatrecruitmentviadirectchannelswasmostsuccessful,probablybecausepartnerstrustoneandother.

6.1 Limitations

The findings in the report should be read while having in mind that PwDs from different Europeancountriesare involved.NotallPwDs inEuropecurrentlyhave thesameaccess to ICTdevicesand theinternet.Furthermore,theorganizationofthecareprovisionisnotthesamewhilealsotheacceptanceof

8Ageing-in-place:theintegrateddesignofhousingfacilitiesforpeoplewithdementia(http://repository.tue.nl/685914)9Designofawebsiteforhomemodificationsforolderpersonswithdementia(KortH&vanHoofJ,DOI:10.3233/TAD-140399)


thesystemneedstobeconsidered.TheMedGUIDEsystemshouldbesuchthatitcanbeincorporatedwithinothersystemswhichprofessionalsareusing.Anotherlimitationis,inthegatheringofthedata.Insomecases,orcountries,groupsessionswereorganizedwhileotherinterviewswereface-to-face.GroupsessionshavetheadvantagethatparticipantscanbetriggeredtorememberthingsespeciallyincaseofPwDs,whileotherscanbemotivatedtoactivelyjointhesessionortheyjustkeepquietwithoutbeingnoticed.Theadvantageoftheface-to-facesessionisthatmorein-depthconversationscouldbeheld,butwhenaPwDwastiredthesessionhadtoend.Interviewsinanyformhavelimitationsinitselfbecauseobviousthingsmightnotbementionedbutcouldbeveryrelevantfortheproject.Observationswerepartof the project proposal but due to the complexity of the recruitment of this group not feasible.Observationscouldhaverevealedwhatisn’tobvious.TherecruitmentofthePwDswascomplexduetothefactthatallhaddirectaccesstothePwDscommunity,althoughallpartieshavegoodrelationswithAlzheimerorganizationsineachcountry.


7 Conclusion

Findingsregardingthespecificationsrangefromvisualergonomics,limitationswithallsensesastotheresponsivenessandusabilityaswellaseaseofuseofthesystemtodevelop.Accordingtotheend-users,thesystemshouldalsosupportPwDautonomyandfeelingofcontrol.Thesystemshouldhelptheend-user(s)togetbetteroreasieraccesstoinformationaboute.g.medicationuse,adverseeffectsandside-effects.ThesystemshouldnotleadtoanextracareorworkloadforthecarersbutshouldsupportthePwDsandtheirnetwork.Inconclusion,thefindingsinthisdeliverabledirectstoasystemwhichshouldmaintainfamiliarityforthePwDandwhichcansupportthemincopingwithchangesintheirmedicationwhileprofessionalsareabletocommunicatewiththemandgivepositivefeedback.


8 References

vanHoof,J.(2010).Ageing-in-place:Theintegrateddesignofhousingfacilitiesforpeoplewithdementia(Doctoraldissertation,PhDthesis,TechnicalUniversityofEindhoven,Eindhoven).

Kort,H. S.,& vanHoof, J. (2014).Designof awebsite for homemodifications for older personswithdementia.Technologyanddisability,26(1),1-10.

www.hjelpemiddeldatabasen.no

www.evondos.com/service/evondos-e300-automatic-medicine-dispenser

www.medapp.nu/en

www.medido.philips.nl

www.congredi.org


9 Appendix1:Researchprotocol

VersionFINAL1.2,June21,2017


































Documents

MedGUIDE D1.1 End-user requirements and specificationmedguide-aal.eu/.../MedGUIDE-D1.1-User-Requirements-final-31-okt-2… · Sept/Oct 2017 Results from end-user interviews Janna