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Annotatedcasestudy:Howpeoplewithmoderatetoseveredementiarespondedtoaprototypedigitalworld1Author:MandySalomon,PhD.,Co-founder&CEO,Mentiamandy@mentia.me|@msalomon

Background1

Alltoooften,peoplewithdementiaarelockedoutofadigitallifebecausethesoftwarefailstoaccommodatetheirneeds.Atthesametime,weknowthathavingadigitallifehelpsustocommunicate,learn,buildconnectionsandlivewell.With13.8millionpeopleintheUSAforecasttohavedementiain2050,manyofwhomwillhaveuseddigitaltoolsintheireverydaylife,digitalinclusionisanimportantpartofwell-being–andsoitisaprominentresearchchallenge.Whatwouldittaketoenablepeoplewithdementiatoshareinsuchactivities?Toexplorethisquestion,Iundertookafour-yearPh.D.(2012-16),workinginGerontology,HCI,andMediaandCommunicationdisciplinesatSwinburneUniversityofTechnology,Melbourne.

Adeepinvestigationintohowbesttodelivercreativeandenrichingdigitally-enabledactivitiesledtoaprototype,which,uniquely,takesinspirationfromsome800-millionpeoplethroughouttheworldwhoplayinteractivevideogamesthatdrawthemintonewrealmsofengagementandpossibility.Aftera4-monthperiodofco-designwithresidents at a memory-assisted living community, a naturalistic usability evaluation of the prototype wasundertaken,withthesamecohort(n=10).

Method

Thenaturalisticmethodofevaluationseekstounderstandresponsestothecharacteristicsofasoftwareprogrambygivingparticipantsanopenbrieftoexplorethetechnology inanywaytheychoose.2Anaturalisticevaluationtakesplaceinauser’snaturalsetting.Overareasonableperiod,theresearcherobservesparticipants’experiencestoformanunderstandingofarangeofuser-attemptedtasks.

In this study, botha “primary”player anda “support”player (theplayerpair)were involved. Itwas, therefore,importanttoconsidertheimpactofthesupportplayer’spromptingandguidingrole.Uponconsideration,thedyadicinteractionarisingfromthesupportplayer’sinvolvementwasintrinsic,witheachmemberofthedyadcontributingtoanengagementeffect.Anyinteractionsthatwereinitiatedbythesupportplayerwereseennottocontravenenaturalisticinquiryprinciples.

CaseStudy

“Peter”residedatdementiaspecificunitwithinacarehome.Hehadbeeninbusinessmostofhislife.Hetooktherequesttohelpustrialanewproductearnestlyandenjoyedgivinghisopinionthroughout.

Left:theplayerpairinsharedconcentration.Inthisinstance,Peterhastakenthelead.Thesupporterleansintolookmorecloselytoseehismusicselection.Right:Petermakeshismusicselection.[Permissiontoshowfaces]

1Salomon,MBuildingavirtualworldfordementiacare,AustralianJournalofDementiaCare,Vol3No5pp17-192Siegel,D.(2012).Usabilityforengagedusers.Thenaturalisticapproachtoevaluation.InJ.A.Jacko(Ed.),HumanComputerInteractionHandbook(3rded.,pp.1243–1247).BocaRaton:CRCPress.http://doi.org/10.1201/b11963-52

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WeaskedPeterhowhehadmanagedtomakethebirds“fly”.Peteroftenjumbledhiswords,butonthisoccasion,hiswordswereclear:“IfIknewhowtodothat,Iwouldn’tbehere.”

What underlies this comment? That Peter possessed a self-deprecatingbrandofhumor;thatheknewhewas“here”ratherthansomewhereelse,possiblyhishome;thathewasawareoftheimplicationsofhisimpairment.Significantly,indistinguishinghiscurrentselffromhispastself,Peterhadindicatedahighlevelofself-awareness.

Peter’ssessionhadhelpeduslearnabouttheprototype’susability,butintheprocess,wealsolearnedaboutPeter.Furthermore,inspiteofaPsychogeriatricAssessmentScale(PAS)scoreof16,2whichplacedhiminthe‘severeimpairment’category,Peterhadactivelyparticipatedinthesession.

Findings

Peter’sactionsandcommentsIndicatedthatheexpectedrepresentationalobjectstoperformthesamewayastheiractualworldcounterparts.Forexample,heacknowledgedthatgraphicalflowerswererepresentationsofactualones.Interestingly,healsoacceptedthatrulesoftheworld:thattapping on the flower would make it “grow” which of

coursedoesnothappen in theactualworld.Similarly,heaccepted that thedigital representationofpianokeysequatedactualpianokeys,andplayedthem.Hedemonstratedanunderstandingofscenetransitionsfromonescenewithintheworldtoanother,withcommentssuchas“Thebedroom?”and“Oh,backagain.”Thefactthathetookstepstointeractunaidedmayhavecontributedtoasenseofcontrolandagency.Hewasingoodspiritsattheendofthesessionandaskedabouttheprice(seetextbox,above).

ThesupportplayercommentedafterthesessionthatherexperienceasaMontessoripractitioner“helpedalot”.Sheexpressedadesiretodoitagain,andadded:“IthinkthemoreIdoit,themoreIknowwhattodo.”AstaffobservercommentedthatPeterreturnedtohisgroup“happy”,andsettled”,andwastalkingabouttheapp“allthewaydownthecorridor”.Whenaskedabouthowtheactivitycomparedwithaone-to-onesessionlookingatabook,shereplied,“Therewasnocomparison”,whichwastakentomeanthatthebookwouldnotholdPeter’sattentioninthesameway.Whenaskedifshewouldliketotrybeingasupportplayer,theobserveransweredfirmly:“Yes”.

Conclusion

Theevaluationshowedthatpeopleofdiversebackgroundsandexperiencescouldplaytheresearchprototypeandthatitwasascaffoldforarangeofcommunicationstylessuchasnonverbalornon-English.Thecaregiverpartner,intheroleofsupporter,managedtobringtheprimaryplayertoan“optimalzone”ofplayandshefoundthistobeanenrichingactivity.Basedonthisresearch,Mentiaisnowbringingitsfirstproduct,Deva™tomarket.

3AustralianGovernmentDepartmentofHealth.AgedCareFundingInstrument(ACFI)UserGuide,2017p.28https://agedcare.health.gov.au/sites/g/files/net1426/f/documents/02_2017/final_acfi_user_guide_2017.pdf

Peter was forthcoming with advice: P: “Already on the market? Is it already? ...It’s fantastic. Have you got a price?” M: (It’s free). P: [Quizzical] “It’s free?” M: “Ok. How about five dollars?” P: “That’s all?” [Thinks] “Start with 10 dollars and see how it goes. When you make the first million, you will let me know. Sell it straight away.” [Pauses] “Well, as I say, it’s fantastic.”