Living with Dementia: Changing the Status Quo ?· 6 Living with Dementia: Changing the Status Quo INTRODUCTION…

Download Living with Dementia: Changing the Status Quo ?· 6 Living with Dementia: Changing the Status Quo INTRODUCTION…

Post on 15-Oct-2018

212 views

Category:

Documents

0 download

Embed Size (px)

TRANSCRIPT

  • LivingwithDementia:ChangingtheStatusQuo

    2016

    PoweredbyPeoplewithPurpose

  • 2

    DEDICATIONThiswhitepaperisdedicatedtoalltheamazingpeoplelivingwithdementiawhoarespeakingoutandteachingtheworldaboutlivingwithdementia.

    ACKNOWLEDGEMENTS

    Thewritingofthewhitepaper,ledbyKarenLove,DAAExecutiveDirector,wasacollaborativeeffortwiththefollowingcontributors

    JackiePinkowitz,MicheleOchsner,RobinAndrews,SonyaBarsness,JanBays,SooBorson,KittyBuckwalter,WalterCoffey,LyndaCrandall,EvyCugelman,KathyDickman,PatrickDoyle,SherryDupuis,MichaelEllenbogen,AnneEllett,RichardFenker,ElayneForgie,SusanGilster,

    AlexanderSandyHalperin,BillKeane,JulietKerlin,NancyKriseman,RosemaryLaird,NancyEmersonLombardo,TruthfulLovingKindness,KimMcRae,ChrisPerna,AlPower,PercellSmith,TeepaSnow,andRollinWright[seeAppendix1].

    TheDementiaActionAllianceisgratefultotheJ.ClairmontFamilyFund

    foritsfundingsupportofthiswhitepaper.

    2016DementiaActionAlliance

  • 3

    TABLEOFCONTENTS

    ExecutiveSummary.........................................................................................4

    Introduction.....................................................................................................6

    WhatFuelsMisperceptions,StigmaandStereotype.......................................9

    TheTraditionalMedicalCulture....................................................................11

    Person-CenteredApproaches........................................................................14

    Well-Being.....................................................................................................18

    WordsMatter................................................................................................22

    TransitioningtoaBio-Psycho-Social-SpiritualCulture...................................25

    ConclusionandRecommendations...............................................................28

    References.....................................................................................................33

    AppendixIWhitePaperContributor.........................................................38

    AppendixIIDAAsPerson-CenteredDementiaValues&Principles..........40

  • 4

    EXECUTIVESUMMARY~~~~~~~~~~

    Wevebeenwrongaboutwhatourjobisinmedicine.Wethinkour

    jobistoensurehealthandsurvival.Butreallyitislargerthanthat.

    Itistoenablewell-being.~Atul Gawande (2014, p. 259)

    ~~~~~~~~~~ Dr.Gawandesstatementisanimportantshotoverthebowabouttheinadequacyof

    conventionalmedicinetoenablewell-being.Theoft-citedPreambletotheConstitutionofthe

    WorldHealthOrganizationdefineswell-beingasastateofcompletephysical,mental,and

    socialwell-beingandnotmerelytheabsenceofdiseaseorinfirmity.Thiswhitepaper

    examinestheimpactthatthetraditionalmedicalmodelofcarehasuponthewell-beingof

    peoplelivingwithdementiaaswellasthesocietalfactorsthatcontributetounderminingtheir

    well-being.Thispaperrepresentsthecollectiveperspectivesofdiversestakeholdersincluding

    individualslivingwithdementiawhoaretheutmostexpertsofthelivedexperience.The

    consensusopinionsexpressedinthepaperaremeantasawake-upcallaboutthesignificant

    andserioussocietalissuesimpedingthewell-beingofpeoplelivingwithdementiaandtheir

    abilitytoliveaswellaspossiblewithachroniccondition.

    Traditionalmedicineisresponsibleforsignificantandlife-alteringadvancesinthemanagement

    ofmanyillnesses,andthevaluedworkofhealthcareprofessionalsisdeeplyappreciated.

    Currentmedicalmodels,however,oftenfailpeopleandfamiliesaffectedbydementia.

    Oncediagnosedwithdementia,peoplesfeelings,actions,andexpressionscanbecome

    reducedtosymptomswithinaproblematizedfieldofpossibility.Theretendstobeaprocess

    ofdehumanizationthatobjectifiespeoplewhohavedementiaandregardsthemasstages

    ofdiseaseanddeficit.Neededinsteadarebroader,moreintegrativemedicalapproaches

    drawinguponanunderstandingoftheholisticbio-psycho-social-spiritualdimensionsthatbest

    supportwell-being.

    Alsoconfoundingwell-beingforpeoplelivingwithdementiaaresocialattitudes,

    misperceptions,barriersandstigmaaboutdementia.Theoriginscanbeattributed

  • 5

    toaconfluenceoffactors:(1)societylookstohealthcareprofessionalsforguidanceand

    understandingaboutchronicconditionssuchasdementiabuthealthcareprofessionalsoften

    havealimitedperspectiveandunderstandingaboutthelivedexperienceofdementia;

    (2)theexclusionofpeoplelivingwithdementiaandtheirinformedperspectivesfromserving

    andthushavinginputonexpertpanelsandotherinfluentialvenues;(3)thedisconnectabout

    whatconstitutessuccessintermsofmanagingchronicconditionsbetweentraditionalmedical

    practitionersandpeopleactuallylivingwithchronicconditions;(4)print,broadcastandfilm

    mediaspropensitytosensationalizestorylines;and(5)theuseoffear-mongeringtacticsto

    elicitfundingsupport.

    Whilethewhitepaperdoesnotaimtobecontroversial,itisintendedtobepragmaticand

    direct.Weaddressthetwoelephantsintheroom(1)traditionalmedicineandthefailure

    ofmanyhealthcarepractitionersandhealthcaresettingstoaddresstheneedsofindividuals

    livingwithdementia,and(2)societalmisperceptions,attitudesandstigmasaboutdementia

    andtheimpactthishasonwell-being.Agrowingmovementofconsumers,consumer

    advocates,healthcareprovidersandpractitioners,andpolicymakersamongotherscurrently

    championwhathasbecomewidelyknownasperson-centeredcarebecauseofthehumanistic

    valuesandpractices.Person-centeredapproachesencompasstheintegratedbio-psycho-

    social-spiritualdimensionsofhumanexistencethatprovideacontextforwell-being.Adopting

    aholistic,person-centeredapproachisanexpansionuponratherthanarejectionoftraditional

    medicine.Person-centeredpracticesarearesponsetothelargelyimpersonalandhighly

    fragmentedhealthcaresystemissuescitedbytheInstituteofMedicineinitsseminalreport,

    CrossingtheQualityChasm.

    ~~~~~~~~~~

    ABOUTTHISPAPER

    Thiswhitepaperisintendedforabroadaudienceincludingpolicymakers,healthcare

    practitioners,long-termserviceandsupportproviders,researchers,andadvocatesamong

    others.Theconsensusopinionsexpressedinthepaperarearesultofmonthsofemailand

    telephoneexchanges,collaborativewriting,andnumerousroundsoffeedbackandediting.

  • 6

    LivingwithDementia:ChangingtheStatusQuo

    INTRODUCTION

    Curledupinafavoritechairwithhercatpurringbesideher,ChristineBrydenreada

    congratulatoryletterfromthepublisherofher1998book,WhoWillIBeWhenIDie,letting

    herknowthatthebookhadsoldsomanycopiesitwasgoingintoreprint.Christineslife

    hadtakenmanyunexpectedturnssincebeingdiagnosedwithAlzheimersdiseasein1995.

    Herneurologisthadinformedherthatshewouldhaveaboutfiveyearstillyoubecome

    demented,thenafewyearsafterthatinanursinghometillyoudie(Bryden,2005,p.26-27).

    Sheinitiallyenvisionedherselflivinginanursinghomeby2000anddeadafewyearslater.

    Instead,Christineimmersedherselfincontinuingtoliveherlifeasfullyaspossiblewith

    dementia.Christinehasupendedstereotypesaboutlivingwithdementiaandhercan-dospirit

    ledhertocompleteapost-graduatedegree,remarry,andspeakaroundtheworld.

    IsChristineanoutlierandisherexperiencelivingwithdementiaunusual?Thankstothewide

    reachoftheInternet,wearelearningChristinesexperienceisnotsounusual.Moreandmore

    peopleintheearlyandmid-stagesofdementiaareopenlywritingandtalkingabouttheir

    experiencesoflivingwithdementia.Theresultisanextraordinaryglobalnetworkofpeople

    livingwithdementiawhoareusingsocialmediatocreateonlineforums,websitesand

    in-personget-togetherstohelpthemselves,supportothersandtohelpseekpublicand

    privatefundingforlocal,state,nationalandglobalinitiativesandprograms.Thefollowing

    aresomeexamples.TheYoungOnsetDementiaSupportGroupisanonlinesupportgroupon

    Facebook(www.facebook.com/YoungOnsetDementiaSupportGroup);ForgetMeNotisan

    onlinegroupsupportingpeoplewithallformsofdementia(www.forgetmenot.support);

    andDementiaMentorsandforMemoryareexamplesofwebsitesorganizedandoperated

    bypeoplelivingwithdementia(www.dementiamentors.comandwww.formemory.org).

  • 7

    JenniferBute,aretiredphysician,sharesherpersonalperspectiveonlivingwithdementia

    atwww.gloriousopportunity.org,andKateSwafferblogsfromAustralia(kateswaffer.com/

    daily-blog).IntheU.K.,SURFLiverpooloperatesarobustTwitteraccountandmeetsonce

    amonth,andtheDementiaEngagementandEmpowermentProject(DEEP)coordinatesmany

    programsandactivities(www.dementiavoices.org.uk).Thereisaninternationalorganization

    runforandbypeoplelivingwithdementia,DementiaAllianceInternational

    (www.dementiaallianceinternational.org).

    Oftenpeoplelivingwithdementiadescribehowfamilymembersassumethatadementia

    diagnosisimmediatelyrendersthemdependent,incapableandhelplessandmayseektotake

    overdecision-makingliterallydaysafteradiagnosis.RichardTaylor,aretireduniversity

    professorwithprobableAlzheimersdementia,foundthatthestigmasurroundingdementia

    ledhisfamilyandfriendstoquestionhisabilitytomakedecisionsaffectinghiseverydaylife

    CanIbetrustedtospendtimealonewithmygranddaughter?CanI,shouldIhandlemyown

    money,answerthedoor?(Dupuisetal,2011).ThesubjectofaCNNMedicalNewsseries

    forthepastthreeyears,AlexanderSandyHalperin,aretireddentistfinds,Stigmasabout

    dementiacanbuildmassivebarrierwallsthatcanpreventusfromhavingasfulfilledofalife

    aspossible.Stigmasrobmeoflivingmylifetoitsfullestwithdementia(Halperin,2015).

    Inastudyoffamilymemberswhoselovedoneshadadementiadiagnosis,morethan

    50percentbelievedlifewithdementiawasnotworthlivingandmanyconsideredtheperson

    sociallydead(Sweeting&Gilhooly,1997).AustralianauthorandadvocateKateSwaffercoined

    thetermPrescribedDisenga

Recommended

View more >