LivingwithDementia:ChangingtheStatusQuo
2016
PoweredbyPeoplewithPurpose
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DEDICATIONThiswhitepaperisdedicatedtoalltheamazingpeoplelivingwithdementiawhoarespeakingoutandteachingtheworldaboutlivingwithdementia.
ACKNOWLEDGEMENTS
Thewritingofthewhitepaper,ledbyKarenLove,DAAExecutiveDirector,wasacollaborativeeffortwiththefollowingcontributors—
JackiePinkowitz,MicheleOchsner,RobinAndrews,SonyaBarsness,JanBays,SooBorson,KittyBuckwalter,WalterCoffey,LyndaCrandall,EvyCugelman,KathyDickman,PatrickDoyle,SherryDupuis,MichaelEllenbogen,AnneEllett,RichardFenker,ElayneForgie,SusanGilster,
Alexander“Sandy”Halperin,BillKeane,JulietKerlin,NancyKriseman,RosemaryLaird,NancyEmersonLombardo,TruthfulLovingKindness,KimMcRae,ChrisPerna,AlPower,PercellSmith,TeepaSnow,andRollinWright[seeAppendix1].
TheDementiaActionAllianceisgratefultotheJ.ClairmontFamilyFund
foritsfundingsupportofthiswhitepaper.
©2016DementiaActionAlliance
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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
AppendixI—WhitePaperContributor.........................................................38
AppendixII—DAA’sPerson-CenteredDementiaValues&Principles..........40
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EXECUTIVESUMMARY~~~~~~~~~~
“We’vebeenwrongaboutwhatourjobisinmedicine.Wethinkour
jobistoensurehealthandsurvival.Butreallyitislargerthanthat.
Itistoenablewell-being.”~Atul Gawande (2014, p. 259)
~~~~~~~~~~
Dr.Gawande’sstatementisanimportant“shotoverthebow”abouttheinadequacyof
conventionalmedicinetoenablewell-being.Theoft-citedPreambletotheConstitutionofthe
WorldHealthOrganizationdefineswell-beingas“astateofcompletephysical,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,peoples’feelings,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
media’spropensitytosensationalizestorylines;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.
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LivingwithDementia:ChangingtheStatusQuo
INTRODUCTION
Curledupinafavoritechairwithhercatpurringbesideher,ChristineBrydenreada
congratulatoryletterfromthepublisherofher1998book,WhoWillIBeWhenIDie,letting
herknowthatthebookhadsoldsomanycopiesitwasgoingintoreprint.Christine’slife
hadtakenmanyunexpectedturnssincebeingdiagnosedwithAlzheimer’sdiseasein1995.
Herneurologisthadinformedherthatshewouldhave“aboutfiveyearstillyoubecome
demented,thenafewyearsafterthatinanursinghometillyoudie”(Bryden,2005,p.26-27).
Sheinitiallyenvisionedherselflivinginanursinghomeby2000anddeadafewyearslater.
Instead,Christineimmersedherselfincontinuingtoliveherlifeasfullyaspossiblewith
dementia.Christinehasupendedstereotypesaboutlivingwithdementiaandhercan-dospirit
ledhertocompleteapost-graduatedegree,remarry,andspeakaroundtheworld.
IsChristineanoutlierandisherexperiencelivingwithdementiaunusual?Thankstothewide
reachoftheInternet,wearelearningChristine’sexperienceisnotsounusual.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).
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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
professorwithprobableAlzheimer’sdementia,foundthatthestigmasurroundingdementia
ledhisfamilyandfriendstoquestionhisabilitytomakedecisionsaffectinghiseverydaylife—
“CanIbetrustedtospendtimealonewithmygranddaughter?CanI,shouldIhandlemyown
money,answerthedoor?”(Dupuisetal,2011).ThesubjectofaCNNMedicalNewsseries
forthepastthreeyears,Alexander“Sandy”Halperin,aretireddentistfinds,“Stigmasabout
dementiacanbuildmassivebarrierwallsthatcanpreventusfromhavingasfulfilledofalife
aspossible.Stigmasrobmeoflivingmylifetoitsfullestwithdementia”(Halperin,2015).
Inastudyoffamilymemberswhoselovedoneshadadementiadiagnosis,morethan
50percentbelievedlifewithdementiawasnotworthlivingandmanyconsideredtheperson
sociallydead(Sweeting&Gilhooly,1997).AustralianauthorandadvocateKateSwaffercoined
theterm‘PrescribedDisengagement’forthismentality.“This(prescribeddisengagement)sets
uppeoplewithdementiatolivealifewithouthope,withoutanysenseofafutureanddestroys
thenotionofwell-being.PrescribedDisengagement™setsupachainreactionofhopelessness
andterrorwhichnegativelyimpactsaperson’sabilitytobepositive,resilientandproactive,
ultimatelyaffectingtheirwell-beingandqualityoflife”(Swaffer,2014b,p.1).
Justasstereotypesaboutrace,gender,socioeconomicstatus,ethnicityandagingcanhave
ahugeimpactontheself-conceptofindividualsandtheirtreatmentatthehandsofsociety,
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sodostereotypesaboutdementia.Thereisabundantevidencethatsocietiesglobally
stigmatizeanddevaluepeoplelivingwithdementia(Brooker,2008;Moyleetal,2011;Swaffer,
2014a).Aglancebackatthehistoryofmedicinerevealsthatthestigmaandmisperceptions
surroundingdementiaarehardlyunique.Societiesstigmatizemedicalconditionsthatare
feared,misunderstoodorevokesocialprejudices,andexamplesincludecancer,mentalillness,
developmentaldisabilities,alcoholanddrugaddiction,epilepsy,obesityandHIV/AIDS.
Theresultsincludeshame,socialisolationandinadequatecareandsupport.Whilerecognizing
thatsocietieshavenotsetouttointentionallyharmordevaluepeoplelivingwithdementia,
theconsequencesofthestigmaattachedtodementiacanfosterwhatSwaffercalls
PrescribedDisengagement™.
Whilelivingwithdementiapresentsmanysignificantandlife-alteringchallenges,acommon
themeamongindividualswhoarecontinuingtolivefullyisthenecessityofdeveloping
acan-dospiritandpositivemindset.Dementiaisalong-termhealthconditionandoften
peoplediagnosedwithdementiacanbeotherwisephysicallyhealthy.Afterapersonreceives
adiagnosisofdementiawhatheorshetypicallyneedsmostisinformationabouthowtolive
withthephysicalandemotionalaspectsoftheconditionandtheneedforthemtohavestrong
emotionalandsocialsupport.Themajorityofarticlesandinformationaboutdementiatend
tofocusonaspectsofdementiathatfanfeelingsofhopelessnessanddespair.Imagine
thebenefitsofinformationthatempowersindividualsdiagnosedwithdementiatoliveas
independentlyandmeaningfullyofalifeasispossible.Mightthistypeofparadigmshift
encourageindividualswithdementiatobeproactive,focusontheirstrengthsandengage
thesupportoffamiliesandfriends?Couldthisincreasetheirresilience?
InTwitterfashion,SandyHalperinuses139characterstodescribelivingfullywithdementia—
~~~~~~~~~~“Maintainingafulfillinglifestyleunderprevailingemotional
andphysicalcircumstances,beingengagedinwhatgivesmejoy
asIliveinthegiftofthepresent.”
~~~~~~~~~~
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WHATFUELSMISPERCEPTIONS,STIGMAANDSTEREOTYPES
Stigmaandmisperceptionshavenegativecascadingconsequencesaffectingthepersonliving
withdementiaaswellashisorherfamilyand/orcarepartners’perceptionsandunderstanding
ofthecondition.Socialattitudesandstigmaaboutdementiacanbeattributedtoaconfluence
offactors:(1)societyconfersauthoritytohealthcareexpertsaboutlivingwithchronic
conditionssuchasdementiabuthealthcareexpertsoftenhavelimitedknowledge,perspective
andunderstandingaboutthelivedexperience;(2)theexclusionofpeoplelivingwithdementia,
withtheirinformedliving-withperspectives,fromservingandthushavinginputonexpert
panels/conferencesandotherinfluentialvenuesthatdefinethepublicviewofdementiaand
setdirectionsforresearchandservices;(3)thedisconnectbetweenmedicalprovidersand
peopleactuallylivingwithchronicconditionsastowhatconstitutessuccessinmanagingthose
conditions;(4)print,broadcastandfilmmedia’spropensitytosensationalizestorylines;and
(5)theuseoffear-mongeringtacticstoelicitfundingsupport.
Thegeneralpublictypicallylookstohealthcareprofessionalsforunderstandingofhealth
conditions.Healthcareprofessionals’expertiseoftenisfocusedonthephysicalhealthprocess
andnotonthefulllivingexperience.Thus,theinformationconveyedtothegeneralpublicis
symptom-relatedandincompleteintermsoflivingfullywithachroniccondition.Thegeneral
public,notrealizingtheinformationonlypertainstothemedicalaspectsofdementia,endsup
withamedicalizedperspectiveofwhatitistolivewithdementia.
Theinformedperspectivesandsubjectiveexperiences
ofpeoplelivingwithdementiaprovidewhatmanyconsider
asthemostcrucial.Unfortunately,peoplelivingwith
dementiahavefaceddiscriminationwhenitcomesto
servingonexpertpanelsandinotherinfluentialforums
despitetheNothingAboutUsWithoutUsmovementwhich
hassuccessfullydemandedequalandfairrepresentationfor
othermarginalizedpopulationssuchaspeoplewithotherintellectualandphysicaldisabilities.
AnotableexampleofexclusionofpeoplelivingwithdementiaistheNationalAlzheimer’s
The informed perspectives and
subjective experiences of people living with
dementia provide what many consider as the
most crucial.
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ProjectAct(NAPA)AdvisoryCouncil.TheformationoftheNAPAAdvisoryCouncilisaresult
oflegislationsignedintofederallawin2011.TheinitialAdvisoryCouncildidnotincludeany
individualslivingwithdementia.AfterprotestfromtheDementiaActionAlliance,among
others,aformercongressmanlivingwithdementiawasaddedtotheCouncilin2013.Allother
stakeholdergroups(e.g.,healthcarepractitioners,researchers,advocacyorganizations)
arerepresentedbytwoindividuals.TheadditionofonlyONEpersonlivingwithdementia
continuestobediscriminatoryandinappropriatelyminimizestherepresentationofan
importantstakeholdergroup.
Print,broadcastandfilmmediagenerallysensationalizethemostdreadedaspectsofliving
withdementiatotitillateandattractaudiences.Thisleavesthegeneralpublicwithaterribly
lopsidedperspectivethatfurtherfuelsmisperceptionsandstereotypes.Similarly,thefear-
mongeringfundraisingtacticsusedbylargeadvocacyorganizationsalsocontributeto
adistortedunderstandingofwhatcanbeexpectedfollowingadiagnosisofdementia.
Thefollowingisoneexampleofafearmongeringfundingappealthatfocusesonresearch
andcureandnotoncareandsupport:
[Redactednameoforganization]doesn’twantanyoneelse
tohavetofacethisnightmarishdisease,whichistheonly
diseaseamongtheleadingcausesofdeathwithno
treatmentorcure.That’swhywe’refightingforacure,and
leadingscientistssaywe’reclose.Butendingthisdisease
willtakeallofusworkingtogether,sowe’reaskingyou:
Willyoufightwithus?
Please,donate$5ormorebeforeDecember31
togetyourtax-deductiblegiftmatched
toendthishorriblediseasefaster.
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THETRADITIONALMEDICALCULTURE
Traditionalmedicineisresponsibleforsignificantandlife-alteringadvancesinprevention,cure
andmanagementofmanyillnesses,andthevaluedworkofhealthcareprofessionalsisdeeply
appreciated.Currentmedicalmodels,however,oftenfailpeopleandfamiliesaffectedby
dementia.Oncediagnosedwithdementia,people’sfeelings,actions,andexpressionscan
becomesymptomswithaproblematizedfieldofpossibility(Mitchelletal,2013).Theretends
tobeaprocessofdehumanizationthatobjectifiespeoplewhohavedementiaandregards
themasstagesofdiseaseanddeficit(Fazioetal,1999).Thetraditionalmedicalmodelandthe
currentorganizationofhealthcaredeliveryarenotpreparedtofullyaddressthevagariesof
dementianorsupportwell-beingforpeoplelivingwithdementiaandtheircarepartners
(Keady,1996;Kitwood,1997;Power,2014;Sabat,2009,2001).
Thereisoftenadifferencebetweenmedicalpractitionersandpeoplelivingwithchronic
conditionsinwhatconstitutessuccessintermsofhealth.Inmanagingchronichealth
conditions,mostmedicalpractitionersmeasuresuccessintermsofdecreasingthenegative
effectsofthecondition(Westphaletal,2015).Peoplelivingwithchronichealthconditions,
however,donotthinkofsuccesssolely—orevenprimarily—inthoseterms.Whiletheywant
tofunctionaswellaspossible,theirnotionofoverallqualityoflifeincludesnon-medically
orientedgoals.Onpaper,thedisconnectionbetweentheprioritiesofhealthcarepractitioners
andpeoplelivingwithchronicconditionsmayseemarelativelyminorissue,butinrealitythis
differenceofprioritiescanhavehugeconsequencesforthewell-beingofpeoplelivingwith
chronicconditions.
Thetheoryunderpinningtraditionalmedicinereflectstheinfluenceoftheseventeenthcentury
philosopher,ReneDescartes.Descartesbelievedthemindandbodyaretwoseparatespheres
andthatmattersofthemindwereofsecondaryimportancewhenitcametofixingthebody
(Russell,2014).Whileemergingtrendsinthinkingabouthealthcareincreasinglyacknowledge
thathealthandwell-beingcanbedisruptedbystressandotheremotional,psychosocialand
economicfactors,thisinsightisnotfullyintegratedintoexistingmedicalpracticeorreflected
intheinformationtypicallycollectedduringthecourseofhealthcareencounters.
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Inawidelycitedarticle,psychiatristGeorgeEngelcriticizedthetraditionalmedicalmodel
asbeingexcessivelynarrowandoversimplified,leadingclinicianstoregardpeopleasobjects
andignorethepossibilitythataperson’ssubjectiveexperiencewasresponsivetoscientific
study(Engel,1977).Hechampionedaholisticfocusonthemedical,psychological,andsocial
dimensionsofhealththathasbecomeknownasthebio-psycho-socialmodel.Dr.Engel
reasonedthatabio-psycho-socialapproachnotonlycouldaddresshealthmore
comprehensivelybutcouldalsoreversethedehumanizinganddisempoweringeffectsof
thetraditionalmedicalmodel.
In2001,theInstituteofMedicine(IOM)releasedaseminalreport,CrossingtheQualityChasm
(IOM,2001),documentingseriousandwidespreadqualityproblemsthroughoutAmerican
healthcarecallingforitsredesignandofferingsixoverarchingrecommendationstoimprovethe
system.ThattheIOMreportcitedthetraditionalhealthcaresystemasbeinglargely
impersonalandfragmentedshouldcomeasnosurprise.Dr.Engelrangthiswarningbellmany
yearsearlier.Excludingpsychological,socialandspiritualdimensionsofhealthcontributes
toimpersonalinteractionsandfragmentedcare.Tocounterthesesystemicproblems,one
oftheIOM’skeyrecommendationswastotransitiontoapatient-centeredapproachtocare.
Giventhisrecommendation,itisironicthattheIOM’sprocessreflectedatechnocraticmindset.
Theblue-ribbonpanelofhealthcareexpertsthatshapedthereportexcluded‘patients’.
Challengedbyhealthcareconsumersandtheirfamiliesaswellasreform-orientedphysicians
andotherhealthcarepractitioners,thecultureandpracticeofmedicinehasevolvedtoinclude
somepractitionersandsettingsthatrecognizethe
importanceofsocialandemotionalsupportandallow
morecollaborative,person-centeredrelationships
betweenpeopleandtheirhealthcareproviders.
Examplesincludehospicecare,moresupportive
settingsforchildbirth,abolishinginstitutionalmodels
forthecareofpersonswithdevelopmentaldisabilities,andthe“culturechange”movement
inlong-termcare.Adoptingaholistic,person-centeredapproachshouldbeviewedasan
Adopting a holistic, person-centered approach
should be viewed as an expansion rather
than a rejection of medical practice as we
know it today.
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expansionratherthanarejectionofmedicalpracticeasweknowittoday.Fourcontributorsto
thispaper,geriatriciansRosemaryLaird,AlPower,andRollinWright,andgeriatricpsychiatrist
SooBorson,areamongthereform-orientedphysiciansadvancingmoreholisticand
comprehensivemodelsofdementiacare.
Yetthenarrowfocusontreatingandcuringphysicaldiseaseremainsdominant.Thishas
significantconsequencesforpeoplewhohavedementia.Sincetherearefeweffectivemedical
treatmentsandnocurefordementia,manyphysiciansareuncomfortableevendiscussing
adiagnosiswithpatientsandfamilymembers(VanHoutetal,2006;Turneretal,2004).
Onestudyfoundthatasmanyashalfofprimarycarephysiciansarenotinfavorofdisclosing
adementiadiagnosis(Franzetal,2010).
Itisimportanttoalsoaddressthepervasiveoveruseofmedicationstotreatwhatare
consideredproblematicbehaviorsexhibitedbypeoplelivingwithdementia.Whilethe
prescribeduseofantipsychoticsmaybeappropriateforindividualswithseriouspre-existing
mentalillnessesanddiagnosedneuropathologies,thewidespreadoff-labeluseof
antipsychoticsisunwarranted(USDHHSOfficeofInspectorGeneral,2011).Besidespotentially
violatingbasichumanrights,thispracticeispredictablyineffectiveandharmful(AGS,2015a).
DonaldBerwickMD,aformeractingadministratoroftheCentersforMedicareandMedicaid
ServicesandchiefexecutiveofficeroftheInstituteforHealthcareImprovement,wasoneof
thechiefarchitectsoftheIOMreport.HewouldhavepreferredhisIOMcolleaguestakethe
conceptof‘patient-centeredness’furtherthantheydid.
“…we(patients,families,clinicians,andthehealthcaresystemasawhole)
wouldallbefarbetteroffifweprofessionalsrecalibratedourworksuchthat
webehavedwithpatientsandfamiliesnotashostsinthecaresystem,butas
guestsintheirlives”(Berwick,2009,p.w559).
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PERSON-CENTEREDAPPROACHES
Althoughmosthealthcareprofessionalshavenotadoptedthe
practiceoftreatingpatientsas‘guestsintheirlives,’thereis
movementtowardamoreexpansiveunderstandingof
‘patients’aspeopleandtherecognitionthatpeoplearenot
continuouslypatients.Aperson-centeredapproachembraces
aholisticbio-psycho-social-spiritualmodelofcare.Aperson-
centeredapproachconsiderswhatismostimportanttotheperson,includinghisorhergoals
andpreferencesandseekstoactivelypromotewell-being.Forexample,asaresultofarecent
policychangetheCentersforMedicareandMedicaidServices(CMS)hasbegunrequiring
hospitalstoprovidepatientswithsatisfactionsurveys.Hospitalsaregatheringevidenceand
learninghowimportantnon-biomedical,psychosocialelementssuchasundisturbedsleep,
watchingafavoriteTVshowandahairwashcanbeforwell-being.Similarly,CMSisstrongly
encouragingnursinghomestoabandonuniformschedulesandinsteadallowresidentstowake
up,taketheirmealsandgotosleepbasedontheirownpreferences.
In2015,aninterprofessionalpanelofhealthcareexpertsconvenedbytheSCANFoundation
andtheAmericanGeriatricsSociety(AGS)developedaconsensusdefinitionofperson-centered
healthcareandservicesforolderadults(AGS,2015b)—
Person-centeredcaremeansthatindividuals’valuesandpreferencesareelicited
and,onceexpressed,guideallaspectsoftheirhealthcare,supportingtheir
realistichealthandlifegoals.Person-centeredcareisachievedthrougha
dynamicrelationshipamongindividuals,otherswhoareimportanttothem,
andallrelevantproviders.Thiscollaborationinformsdecision-makingtothe
extentthattheindividualdesires.
Itisnoteworthythattwosuchrespectedorganizationsidentifiedtheneedforaconsensus
definitionasnecessarytoserveasafoundationforperson-centeredhealthcarepractices.
AswiththeIOM’sCrossingtheQualityChasmreport,olderadultswerenotinvitedto
What is important to a person, including his or her goals and preferences, can be just as significant as
his or her health status.
15
participateontheSCAN/AGSpanel.Hadolderadultsbeenincludedinthisprocess,
asomewhatdifferentdefinitionmighthaveemerged.
TomKitwood,ageriatricpsychologistfromtheU.K.,isinternationallycreditedasthefather
ofapplyingtheconceptofperson-centerednessbasedonhumanismtodementiacare.
FundamentaltoKitwood’stheorywasarejectionofthe
traditionalmedicalapproachtodementiaandthebeliefthat
humanbeingsarefarmoredeeplyaffectedbythesocial,
emotionalandenvironmentalfactorsthatsurroundthem
(Fazio,2008).).KitwoodandBredin(1992)foundthemost
disablingeffectsofcognitiveimpairmenttobethethreatto
one’spersonhood—morethantheactualfunctionalimpairment.Fromtheirextensive
observationsofpeoplelivingwithdementia,KitwoodandBredinidentifiedfourglobalstates
neededforwell-being:(1)personalworth/self-esteem;(2)senseofagency,theabilityto
controlpersonallifeinameaningfulway;(3)socialconfidence;and(4)hope.
In2012,theDementiaActionAlliance(DAA)convenedagroupofthoughtleadersandpeople
livingwithdementiatodevelopaconsensusdefinitionforperson-centereddementiacare
includinganoperationalframeworkforperson-centereddementiacarepractices.Awhite
paper,“DementiaCare:TheQualityChasm,”detailsthisinformation[http://www.ccal.org/
wp-content/uploads/DementiaCareTheQualityChasm_2-20-13-final.pdf].DAA’sdefinition
buildsonKitwood’sandBreden’sformativework:
The most disabling effects of cognitive
impairment were found to be the threat to one’s
personhood — more than the actual
functional impairment.
Person-centereddementiacareandsupportisbasedonthefundamentalbelief
thateverypersonhasauniquebackground,skills,interestsandtheright
todeterminehowtolivehisorherownlife.Person-centereddementiasupport
isfocusedonnurturingtheperson’semotional,social,physical,andspiritual
well-being.Thisisachievedthroughreciprocal,respectfulrelationshipsby:
v Valuingpersonalautonomy,choice,comfortanddignity;
v Focusingontheindividual’sstrengthsandabilities;
v Enablingopportunitiesforcontinuationofnormalcyandgrowthofself;&
v Enhancingindividualpurpose,meaning,enjoymentandbelonging.
16
SincedevelopingtheDAA’sconsensusdefinition,SCAN/AGSconductedasystematicliterature
reviewtohelpinformtheirperson-centeredcareworkdescribedearlier(Koganetal,2015).
Sixprominentelementsofperson-centerednessemergedfromthisreview:holisticorwhole-
personcare,respectandvalue,choice,dignity,self-determination,andpurposefulliving.
AllsixoftheseelementsareembeddedintheDAA’sperson-centereddefinition.
Thefirstelementforperson-centerednessthatemergedfromthesystematicliteraturereview
—holisticorwhole-personcare—isindeednoteworthy.Person-centerednessisbasedona
‘holisticorwhole-person’orientationthat,bydefinition,isbio-psycho-social-spiritualandnot
singularlymedical.
Itisnotpossibletoachieveperson-centeredoutcomessolelywith
traditionalmedicalapproaches.Thisishugelyimportantandbears
repeating—itisnotpossibletoachieveperson-centered
outcomessolelywithtraditionalmedicalapproaches.
Aspreviouslydescribed,person-centerednessholistically
encompassesalldimensionsofwell-beingasopposedtoasingular
focusonphysicalhealth.Toillustratethedifference,traditionalmedicalpractitionersview
actionsexhibitedbypeoplelivingwithdementiaas‘behaviors’whileperson-centered
practitionersviewtheseactionsas‘personalexpressions’.Whiletheword‘behavior’itself
isbenign,whenusedtodescribeactionsexhibitedbypeoplelivingwithdementia,itimplies
undesirableconduct.Sincetheverynatureofdementiaincludeschangesincognitiveabilities,
emotions,andfunctions,actions—orthetermtheDAArecommends‘personalexpressions’—
shouldbeanticipatedandexpectedratherthanconsideredtobeundesirableconduct.The
practicethatconsidersactionsexpressedbypeoplelivingwithdementiaas‘behaviors’isnot
person-centeredwhilethepracticethatconsiderstheseactionsas‘personalexpressions’is.
Whilesomemayfeelthatthisisnomorethanamatterofsemantics,thewordsusedarean
indicatoroftheorientationofthepractitioner.Forinstance,traditionalmedicalpractitioners
addresspersonalexpressionsexhibitedbypeoplewithdementiafromthemindsetas
It is not possible to achieve
person-centered outcomes using the traditional medical approach to care.
17
pathologicalbehaviorrequiringanintervention-eitherpharmacologicornon-pharmacologic.
Theverynatureofdementiaincludeschangesincognitiveabilitiesandfunctionsandpotential
alterationsinhowinternaldesires,feelings,andexperiencesarecommunicated.The
classificationofaresponseas“needinganon-pharmacologicintervention”medicalizes
‘living’withachronicconditionandcandebasetheperson’shumanity.
Theperson-centeredapproachaddressespersonalexpressionsbyconsideringallcausalfactors
includingsocialandenvironmentalconsiderations,pain,boredom,frustration,anxiety,and
noisedisturbancesamongotherpossiblecauses.Person-centeredpractitionersrecognize
personalexpressionsasameansofcommunicating/conveyingneedsthatthenrequirethemto
decodeandunderstandtheneed.A2012radioprograminDenmarkwithleadersindementia
carenotedthatoutburstsbypeoplewithdementiawererareandwhentheydidoccur,were
consideredafailureofunderstandingorrespondingtotheperson’sneedandnotadisease
process(Wells,2012).
Playingsoothingmusicandtakingawalktocalm
someonewithdementiawhohasbecomerestlessare
consideredbytraditionalmedicalpractitionersas
non-pharmacologicinterventions(Medeiros&
Basting,2013).Theideaofconsideringmusic
orawalkasan‘intervention’missesthemark
altogether—theseactivitiesarepartofusualhuman
lifeandaresharedbyallpeople.Dementiamay
undermineaperson’sabilitytoinitiatesuchactivitiesbutnothisorherenjoymentofthem.
Inplaceofbiomedicalconceptsandtreatments,whatisneededinsteadisafullunderstanding
ofthecondition,compassion,skillinbuildingstrongrelationships,andamindsetoftrialand
errortofigureoutsolutionsandbestactions.Amongmanytraditionalhealthcarepractitioners
thereisevenresistancetoconsideringnon-pharmacologicinterventionsbecausethereis
limitedempiricalevidenceinthebiomedicalresearchliteraturetosupporttheirefficacy,and
becausetheydonotfallwithintheirskillset.
“My conclusion is that non-pharmacological interventions
as they are most commonly applied are attempts to provide
person-centered care from a biomedical mindset. As such,
it is only a half-hearted paradigm shift, and so it falls
short.” (Power, 2015).
18
Peoplelivingwithdementiaarespeakingoutpubliclyandexplainingthattheexperienceof
dementiaisdynamicandfluidandnot,astypicallyportrayed,aprogressive,irreversibledecline
inone’shumanity(Mitchelletal,2011).Someindividualswithdementiaaredescribingthat
howotherstreatthemcancausethemdistressandsuffering.“Oursenseofwholenessandof
hopeislinkedwithhowweandothersviewandjudgeourpersonhood(Malpas,2012,p.11).”
WELL-BEING
~~~~~~~~~~“We’vebeenwrongaboutwhatourjobisinmedicine.Wethinkour
jobistoensurehealthandsurvival.Butreallyitislargerthanthat.
Itistoenablewell-being.”~Atul Gawande (2014, p. 259)
~~~~~~~~~~
Dr.Gawande’sstatementsignalstheneedforamajor
departurefromtraditionalbiomedicine.Well-beingis
fundamentaltothequalityofone’slife.Theoft-cited
PreambletotheConstitutionoftheWorldHealth
Organization(WHO)defineswell-beingas“astateof
completephysical,mental,andsocialwell-beingandnot
merelytheabsenceofdiseaseorinfirmity”(WHO,1947).
Thegoalofindividualwell-beingtranscendsinfirmityandismorecomprehensivelyfocused
onalldimensionsofhumanness—mind,bodyandspirit.
Well-beingis‘truenorth’onthecompasspointforperson-centeredness.Therearemany
definitionsofwell-beingbutthereisnotonedefinitionthatiswidelyaccepted.Inorderto
haveacommonbasistounderstandanddiscusswell-beingforpeoplelivingwithdementia,
weofferadefinitionthatbuildsupontheWHO’sPreambleandthedefinitionofwell-being
usedbyTheEdenAlternative:Well-being—astateofmind,bodyandspiritidentifiedby
sevenprimarydomainsincludingpersonalidentity,connectedness,security,autonomy,
andopportunitiestoexperiencemeaning,growthandjoy.
The goal of individual well-being transcends
infirmity and is more comprehensively
focused on all dimensions of
humanness — mind, body and spirit.
19
“Maybe many of us find it easier to give up and
act like you expect us to, not speaking much or really ‘being there’.”
~~~~~~~~~~
“Weoftenhearofcancersurvivors,peoplewhohavedefiedtheoddsbylasting
muchlongerthandoctorshaveexpectedthemto.Andweapplaudtheir
bravery,theircourage,inthisstruggletosurvive.Butwhenwepeoplewith
dementiadon’tdeclineasquicklyasyouthinkweshould,orseemtolast
longerandspeakoutforlongerandtobeactive,thenyouquestionour
diagnosis…Whycan’tyoucheerthedementiasurvivors?Maybemanyofus
wouldsurvivebetterandlongerifwedidnothavetobattleagainstthe
stereotypeofdementia.Maybemanyofusfinditeasiertogiveupandact
likeyouexpectusto,notspeakingmuchorreally‘beingthere’.”
Christine Bryden, (2005, p. 50)
~~~~~~~~~~
ChristineBrydenraisesfundamentalquestionsthatgoto
theheartofwell-beingandlivingfullywithdementia.
Whydoesn’tsocietycheerforpeoplewithdementiawho
arelivingfullandmeaningfullives?Whydothosewith
dementiahavetobattleagainststereotypeswhentheir
energiescouldbestbedeployedfocusedonlivingwellwiththischronichealthcondition?For
example,RichardTaylorwasfrequentlyquestionedaboutwhetherheactuallyhaddementia
whenhiscognitivedeclinedidn’tfollowtheaveragetrajectorysomepeopleimposedonhim.
ChristineandRichardwereearlyself-advocatesspeakingoutagainstthestigmathat
marginalizedanddevaluedthem.Theseandotherpioneeringself-advocateshavecatalyzed
anewgenerationofpeoplelivingwithdementiaandtheirfamiliesandfriendstodemand
change.Theyareteachingtheworldhowtolivefullandpurposefulliveswithdementia.
Whatifdementiawasviewedasadisabilityandpeoplelivingwithdementiaas“differently-
abled”ratherthanhopelesslydamaged?Dementiamayindeedshortenlifeexpectancy,
butitisalong-termconditionandtherecontinuestobemuchlifetolive.A‘differently-abled’
20
perspectiveondementiaisorientedtowell-beingandmakingadaptationsthatsupportliving
asfullyaspossible.
‘Livingwell’withdementiaorotherhealthconditionsdoes
notnecessarilymean‘well’inthemedicalsense,i.e.free
ofdisease.KateSwafferviewsdementiaasadisability
explaining,“Itmeansothersenablemetolivethebestlife
possible”(Swaffer,2015).Whenshedecidedtoearna
degreeattheUniversityofSouthAustraliaafterbeing
diagnosedwithyoungon-setAlzheimer’s,shemetwithaDisabilityAdviserwhoworkedwith
hertodevelopaDisabilityAccessPlan.“ThisAccessPlanevolvedasthesymptomsdemanded,
changinginthesamewayitwouldifIhadanacquiredbraininjury,oradiseaselikemultiple
sclerosiswheresymptomsareregularlychanging.Iwastreatedasawholeperson,with
supportforthedisabilities”(Swaffer,2014b,p.3).Katewentontoearnthreedegrees—
twoBachelor’sdegreesandaMaster’s.
Peoplewithdisabilitiesendeavortoleadself-affirminglivesanddefinethemselvesaccordingto
theirpersonhood(ideas,beliefs,hopesanddreams)andnothavethedisabilityviewedastheir
sole-definingfeature(Sweeting&Gilhooly,1997).Dementiadefinesonlyoneaspectofa
person’shumanness.“IamRichardwhoseekstoliveapurposefulandpurposefilledlifeupto
andthroughmylastbreath”(Taylor,2009).BrianLeBlanchasasuccinctandtellingsaying—
“IhaveAlzheimer’s,butitdoesn’thaveme”(LeBlanc,2016).
Dependingontheformofdementia,manyexecutivefunctionabilitiesmaybelostfairlyearly
oninthecondition.Executivefunctionsarebrain-controlledabilitiessuchasjudgment,
problemsolving,taskinitiation,planning,organization,andprioritization.Someimpairmentsin
executivefunctionaresubtleanddifficulttodetect.Forexample,ittooklosing40poundsfor
BrianLeBlanc,wholearnedhehadAlzheimer’sdiseaseayearago,torealizehewasforgetting
toeatduringthedaywhenhewasbyhimself.Hesetupadailyreminderonhissmartphone
toprompthimtoeatlunch.WhileBrianwasabletoeasilyprogramhisphonereminderand
Living well with dementia does not
necessarily mean ‘well’ in the medical sense, i.e. free of disease. “It means others
enable me to live the best life possible.”
21
isamasteratsocialmedia,tasksmanypeoplewhodonothavedementiahavedifficultywith,
heneededcompensatoryhelpwiththisexecutivefunctiontoremindhimtoeatlunch.
Brianandhiswife,Shannon,aretakingaproactiveapproachtolivingwithhisdementia.
First,theeffectsofBrian’sdementiacausedhimtoforgettoeatlunchwhenhewasbyhimself.
Hisreactionwastofindawaytosolvetheproblemratherthandwellonthefactthathisbrain
wasn’ttriggeringhimtoeat.Brian’swifethoughtthatprogramminghisphoneasareminder
wasgreatwhichmadehimfeelgoodandproductive.Brianandhiswifecouldhaveresponded
quitedifferentlysuchasthefollowingscenario.Insteadofbeingproactiveaboutlunch,Brian
ruminatesoverthiscognitivechangeandworriesaboutwhatotherabilitieshemaysoonlose.
Heconfideshisworriestohiswife,whobecomesconcerned.Brian’sworryisreinforcedbyhis
wife’sconcerns.Ratherthanbeingproactiveandsolution-oriented,theybothexpendenergies
beingworriedandconcernedaboutsomethingtheycannotcontrol.
Brianandhiswifeareinstinctivelyattunedtobeingproactiveandsupportive.Understandably,
noteveryoneissoattuned.Educationabouttheimpactandbeneficialeffectsbeingproactive
canhaveonlivingwithdementiaprovidesavaluablelessonaboutthiscomponentofwell-being.
Whiletherehasnotbeenspecificresearchfocusedonstudyingtheeffectsofpositiveemotions
anddementia,thereareabundantanecdotesfrompeoplelivingwiththeconditionaboutthe
benefitsandvaluesofbeingpositiveandproactive.Researchershavefoundbeneficialeffects
ofpositivethoughtsandemotionsingeneralpopulationsandthereisvastscientificliterature
onhownegativeemotionsharmthebody.Somehealthbenefitsthatpositivethinkingmay
provideinclude(MayoClinic,2016):
♦ Lowerratesofdepression
♦ Lowerlevelsofdistress
♦ Betterpsychologicalandphysicalwell-being
♦ Bettercopingskillsduringhardshipsandtimesofstress
22
WORDSMATTER
~~~~~~~~~~“Thewordsweusenotonlystronglyinfluencehowotherstreat
orviewpeoplewithdementia,perhapsmoreimportantly,
wordscanimpacthowindividualsviewthemselvesandrelatetoothers…
Wordshavethepotentialtopromoteandempower,enableand
increaseself-esteem,andencourageone’sabilitytoself-help,
orwordscandemean,devalue,disrespectandoffend”
Swaffer, 2014a, p. 710
~~~~~~~~~~
Manyofthewordsusedtodescribedementiacontinuetofocus
onthelossofabilitiesexperiencedbythepersonlivingthis
condition.Focusingonlyonlossespromotesmisperceptionsand
fostersacultureoftreatingpeoplewithdementiaasdiminished.
Onenationallyacclaimeddementiacaregivertrainingprogram
usestheterm‘demented’throughoutembeddingdiscriminatoryperceptionsaboutdementia
amongnewlearners.
“Escapingdementiadoesn’tmeanweescapethe100percentterminalconditionofbeing
human,wordscount.Thisarticleincludedfear-drenchedlanguage:‘robs,’‘dreaded,’‘erosion,’
‘nightmare,’‘burden’and‘insomewaysworse(thandeath)’”wasNicoleBurton’sLettertothe
EditorreactiontoanarticleaboutAlzheimer’spublishedinTheWashingtonPost(Burton,
2015).“Theterm‘demented’ishorrendous;itimpliessomethingwhichisnotevenhuman,”
commentedAnnJohnson,apersonlivingwithdementia(Sabatetal,2011,p.295).
Thereareprecedentsforaddressingharmfullanguagethroughpublicpolicy.Forexample,
Rosa’sLaw,federallegislationpassedin2010,wascreatedforthepurposeofaddressingthe
pejorativeuseoftheword‘mentallyretarded’(GPO,2010).Rosa’sLawmandatestheuseof
Use of stigmatizing language fosters
a culture of treating people with dementia as diminished.
23
theterm‘intellectualdisability’insteadof‘mentallyretarded’infederallyconnectedwork.
Manyofthewordsandtermsusedtodayforandaboutpeoplelivingwithdementia,suchas
‘victim,’‘sufferer,’and‘demented,’arethediscriminatoryequivalentof‘mentallyretarded’.
Inadvanceofco-hostingthe2015Alzheimer’sDiseaseInternationalconference,Alzheimer’s
Australiapublished“DementiaLanguageGuidelines”inordertodrawattentiontothis
importantissue.BuildinguponthestrongworkofAlzheimer’sAustraliaandconducting
manyinterviewswithpeoplelivingwithdementiaaboutappropriateandpreferredlanguage,
theDAApublishedanonlineguide,“LivingFullywithDementia:WordsMatter
(http://daanow.org/living-fully-with-dementia-words-matter).
Traditionalmedically-basedtermssuchas‘symptoms,’‘interventions’,andcategorizing
interventionsasbeingeither‘pharmacologic’or‘non-pharmacologic’areviewedbymany
peoplelivingwithdementiaaswellasreform-mindedadvocatesasdehumanizingand
marginalizingbecausethewordsreducepeopletotheirpathologies.Itdebaseshumans
toreducetheirexperienceoflivingwithachronichealthconditiontomedicalizedterms.
Forexample,inthetraditionalmedicalcontextakind
wordoragentletouchisviewedasa‘non-
pharmacologicintervention’.Themarginalizingterm
‘non-pharmacologicintervention’isinstarkcontrastto
thecaring,relationalaspectofthekindwordorgentle
touchactionthatcanandshouldbepartofordinary
humanexchange.A‘non-pharmacologicintervention’
isnottheappropriatemindsettoaddressfundamental
humanneedswhetherthepersonhasdementiaornot.TheDAArecommendsusingthe
person-centeredphrase‘individualizedapproaches’insteadof‘interventions’.‘Individualized
approach’focusesonacomprehensiveunderstandingoftheindividualandtheircondition,the
buildingofstrongrelationships,compassionandhavingamindsetoftrialanderrorto
determinethebestcoursesofaction.
‘Individualized approach’ focuses on a comprehensive
understanding of the individual and their condition,
the building of strong relationships, compassion
and having a mindset of trial and error to determine the
best courses of action.
24
Theterm‘behavioralandpsychologicalsymptomsofdementia’(BPSD)(Osser&Fischer,2013)
isfrequentlyusedbyhealthcarepractitioners,researchers,andpolicy-makers.Thistermis
anotherexampleofthestigmatizingnatureofmedically-basedwords.Whiletheword
‘behavior’itselfisbenign,asnotedpreviously,whenusedtodescribeactionsexhibitedby
peoplelivingwithdementiaitimpliesundesirable
conduct.Thetermisnotappropriateasitreduces
aperson’sreactionsandbehaviorstohisorher
dementiaconditionwithoutconsideringcausesof
distressincludingrelationalandenvironmentalfactors.
ChristineBrydensuggestsretainingtheacronymBPSD
butchangingwhatitstandsfortobio-psycho-social
distress(BPSD)(Bryden,2015).Notonlyisthistermmoreprecise,butitcanserveasa
remindertodeterminethecauseofthedistressratherthanassumingthebehaviorissimplyan
aspectofthedementiacondition.Theactionsofpersonswithdementiaexpressimportant
aspectsoftheirexperiencesintheworld.
Anotherwordissueconcernstheubiquitousandseeminglyinterchangeableuseoftheterm
‘Alzheimer’s’torefertoanysymptomsofdementia.WhileAlzheimer’sisthemostprevalent
typeofdementia,thereareothertypesofdementiawithhighincidenceratessuchasLewy
Bodydementiathataffectsover1millionAmericans(LewyBodyDementiaAssociation,2015).
Someothercommonformsofdementiaincludevascularandfrontotemporaldementia.The
DAArecommendstheuseoftheterm‘dementia’asitisinclusiveanddoesnotfavor,bias,or
overlookanytypeorcausesofdementia.
Dependingonthestakeholders,avarietyoftermscanbeusedforthe‘person-centered’
andrelationalcontextincluding‘person-directed,’‘resident-centered,’person-focusedand
‘relationship-centered.’Themostcommontermusedandrecognizedgloballyis‘person-
centered.’Toavoidusingatermnotyetwidelyrecognized,theDAAhasdecidedtousethe
term‘person-centered’,butrelationship-centeredandothertermsmaybeequallyor
moreappropriate.
Instead of BPSD standing for ‘behavioral and
psychological symptoms of dementia,’ Christine Bryden
recommends retaining the acronym but change
what it stands for to ‘bio-psycho-social distress’.
25
Somepeoplefeelstronglyaboutincludingtheword‘family’andusetheterm‘person-and
family-centered’toacknowledgethevalueandinclusionoffamily.However,theword‘family’
canbeperceivedaslimiting,sincesomepeoplemaynothave‘family’whileothersmayfeel
moreemotionallyconnectedto‘friends.’Inaddition,theword‘family’excludesthe
relationshipbondthatcanexistwithpaidcarepartners.TheDAA’sdefinitionof‘person-
centered’embedsallvaluedotherssinceaperson’ssocialnetworkisavitalaspectofhisor
herwell-being.
Onefinalbutimportantcommentaboutwords.TheDAArecommendsthefulltermbio-
psycho-social-spiritualoverbio-psycho-social.SinceGeorgeEngel’stime,thespiritual
dimensionhasbecomewidelyrecognizedasanimportantaspectofhealthandwell-being
(Davison&Jhangri,2010).Somepeoplemaybristleatitsinclusionbasedonasensethat
‘spirituality’connotesreligion.Howevermanypeopleviewspiritualityinamuchbroader
context:immersioninart,music,lovingcommunity,servicetoothers,andnatureareamong
theexperiencesthatallowhumanstofeeldeeplyconnectedtosomethinglargerthan
themselves.Assuch,theDAAbelievesthatspiritualityisanimportantelementinintheholistic
bio-psycho-social-spiritualframework.
TRANSITIONINGTOABIO-PSYCHO-SOCIAL-SPIRITUALCULTURE
~~~~~~~~~~“We’recaughtinatransitionalphase.Howevermiserabletheold
systemhasbeen,weareallexpertsatit.Weknowthedance
moves.Withthisnewway,inwhichwetogethertrytofigureout
howtofacemortalityandpreservethefiberofameaningfullife
withitsloyaltiesandindividuality,weareploddingnovices.Weare
goingthroughasocietallearningcurve,onepersonatatime.”
Atul Gwande, (2014, p. 193)
~~~~~~~~~~
26
Asscienceadvances,manybeliefsaboutdementiaarechanging.Itusedtobebelieved,
forexample,thatneuralbraincellswerenotabletoregenerate.Itisnowknownthatneural
braincellsdo,indeed,regenerate(neurogenesis).Theemergingscienceofneuroplasticityis
discoveringwaysneuralreservescanpossiblybeignitedtogeneratenewneuralconnections
tobypassneuralareasimpairedbydementiapathology.Formerly,alltypesofcognitive
impairmentwerebelievedtoprogresstoanadvancedstage.Thisisnowknowntobeuntrue;
mildcognitiveimpairment,forinstance,doesnotalwaysprogresstodementia.
Someareasofhealthcaresuchaschildbirthandcancertreatmenthavealreadybegunthe
transformationtoabio-psycho-social-spiritualcultureofcare.Ifknowingthattraditional
medicalpracticescanmarginalizepeoplelivingwithdementiaisinsufficientrationalefor
changingthecultureofdementiacare,compellingdemographicandfinancialrealitiesshould
providethetippingpoint.
TheU.S.isexperiencingunprecedentedgrowthinthenumber
ofagingAmericansoverallandespeciallyindividualswhohave
dementia.Oneinninepeople65andolderareestimatedtobe
livingwithdementia—over5millionAmericans(Alzheimer’s
Association,2015).Approximately10,000babyboomersinthe
U.S.turn65everydayandthiswillcontinueatthispaceforthenext15yearsmeaningthe
numbersofAmericanslivingwithdementiawillcontinuetogreatlyincreaseoverthisperiod
(PewResearchCenter,2010).Dementiahasbecomethemostexpensivehealthcarecondition
intheU.S.,costingmorethanheartdiseaseandcancer(Hurdetal,2013).
Transformingthemedicalcultureofcaretoonethatsupportslifeaffirmingwell-beingisnotas
simpleasflippingaswitch;itwillrequirestrategic,coordinatedactionsandresourcesatboth
thepublicandprivatesectorlevels.TheU.S.facesanumberofchallengesgreatlyhampering
transitionefforts:(1)insufficientpoliticalwilltobringabouttransformativechanges;(2)lack
ofpublicand/orprivatefundstosupporttheworktoleadandconductcoordinatedpublic-
privateefforts;(3)absenceofpublicandprivatesectorleadershiptoguidethework;and
Dementia has become the most expensive
healthcare condition in the U.S., costing more
than heart disease and cancer.
27
(4)strongresistancefromadherentstothetraditionalmedicalculturewithinpractice,policy
andresearchsectors.Inaddition,thelong-termpoliticaldysfunctionmiringtheU.S.Congress
and,byextension,thefederaladministrationofferslittlehopethatpoliticalenterprisewillbe
acatalysttoadvancetransformativechangeanytimeinthenearfuture.
TheObamaAdministrationhasneverthelesssuccessfullyinitiatedanumberofimportant
effortsthatwillimpactthecultureofU.S.healthcare,including:
§ ThelandmarkpassageoftheAffordableCareAct(ACA)legislationin2010includes
someelementsaimedtobegintransformingthetraditionalmedicalcultureofcare
(ACA,2010).
§ AJanuary2014CMSfinalruletostatesrequiresserviceproviderrecipientsof
moniesforhomeandcommunity-basedservices(HCBS)underMedicaid’s1915(c)
waiverprogram,1915(i)stateplanoption,and1915(k)CommunityFirstChoiceto
implementaperson-centeredplanningprocessthatreflectsclients’preferences
andgoals(FederalRegister,2014).
§ CurrentCMSeffortstorevisetheconditionsforparticipationfornursinghomesthat
receivefederaldollars(FederalRegister,2015).Theproposedrevisionswillbethe
mostwide-sweepingnursinghomereformssincetheOmnibusBudgetReconciliation
Act(H.R.3545,OBRA1987).Akeyaspectofthesereformsembedsperson-centered
practicesintonursinghomeoperationalculture.
28
CONCLUSIONANDRECOMMENDATIONS
Almost40yearsago,Dr.GeorgeEngelstartedringingthewarningbellfortheneedto
transitiontoamoreintegrated,holisticbio-psychosocialmodelofcare.TheIOMrecognizedthe
problemscausedbyimpersonalandfragmentedtraditionalmedicalcareinitslandmark2001
report,“CrossingtheQualityChasm.”Sincethen,othernationallyrecognizedphysicianssuch
asDonaldBerwickandAtulGawandehaverungthebellforneededchange,yetimpersonaland
diminishingtraditionalmedicalmindsetsandpracticescontinuealmostunabated.
Whilerecognizingthatsocietyingeneralandthehealthcaresysteminparticularhavenot
intentionallysetouttoharmordiminishpeoplelivingwithdementiaandthosewhocareabout
them,thelackofconcertedeffortstochangeharmfuland
diminishingbehaviorsandpracticeshasthesameeffectasbeing
intentional.Thereisnotimetodelay.Asalreadynoted,10,000
babyboomersadayforthenext15yearsareturning65.Onein
nineofthemwilllearntheyhavesomeformofdementia.Additionally,manypeopleyounger
thanage65arelearningtheyhaveanearlyon-setformofdementia.Evenifthehumanistic
andhumanrightsconcernsarenotsufficientmotivation,thefactthatdementiahas
becomethemostexpensivehealthcareconditionaloneshouldpropelournation’sleadersto
immediatelyaddresscurrentattitudes,practicesandtheneedfordramaticallyincreased
fundingforcare,cureandtreatment.Knowingbetterdemandsthatwe,asanation,must
DObetter.
Wheretostart?Lookinghistorically,HIV/AIDSisastrongexampleofacommunitythatcame
togetheraroundahealthconditionandwashighlysuccessfulandeffectiveinobtainingample
fundingresourcesandthatchangedmedicalmindsetsandsocietalattitudes,improvedcare
practices,anddevelopedacomprehensiveinfrastructureforthecare,treatmentandsupport
forpeopletolivefullywiththecondition.Thefederalgovernment’sfundingallocationfor
HIVin2016ismorethan$25billion:$18.4billionforsupport,careandtreatment;$3.2billion
forcash/housingassistance;$2.9billionforresearch;and$800millionforprevention
(KaiserFamilyFoundation,2015).The2015HIVfundingallocationrepresentsanincrease
Knowing better demands that we,
as a nation, must DO better.
29
ofalmost$5billiondollarsoverthepastfiveyearsalone.Breastcancerisanotherexampleofa
healthconditionwhoseadvocateshavebeeneffectiveingarneringattention,heightened
awareness,educationandfundingtofosterchangeandimprovementsforthatcondition.
The2016federalgovernmentfundingallocationfor
dementiaisahistorichighof$936million(Alzheimer’s
Association,2015).Therearecurrently1.2million
AmericanslivingwithHIVcomparedtoover5million
Americanslivingwithdementia.Howisitthatdementia,
ahealthconditionwithalmostfivetimesthenumber
ofAmericansaffectedthanHIV,receivessomuchlessfederalfunding?Thereareanumber
offactorsthatmakeHIVmorepoliticallycompellingforthedisproportionatefederalfunding
thandementia.
InitiallythemethodsoftransmissionoftheHIV/AIDSvirus(e.g.,unsafesex,intravenousdrug
use,taintedbloodtransfusions)werenotunderstoodcausingwidespreadalarmthatanyone
couldbeinfected.Untiltreatmentswerefound,thehighlycontagiousvirusinfectedawide
agerangeofpeopleincludingnewbornsandyoungchildrenandthecourseofthevirusfrom
infectiontodeathwasfairlyshort.Therewereheart-wrenching,emotionallycaptivatingstories
aboutyoungchildrenaffected.FewwillforgetthegrippingstoryofRyanWhite,a13-yearold
hemophiliacwhocontractedtheHIV/AIDSvirusthroughabloodtransfusion.Ryancameto
nationalattentionafterbeingbarredfromattendingpublicschoolbecauseoffearof
transmittingthevirus.Thischarismaticyoungman,whodiedwhenhewas18,wonAmerica’s
heartsincludinglawmakers.In1990theRyanWhiteCARE(ComprehensiveAIDSResources
Emergency)Actwassignedintolaw.Thelegislationhasbeenreauthorizedfourtimessince—
in1996,2000,2006,and2009—andisnowcalledtheRyanWhiteHIV/AIDSProgram.
TheProgramisfundedat$2.3billionfor2016.
How is it that dementia, a health condition with almost five times the number of Americans
affected than HIV, receives so much less
federal funding?
30
UnlikeHIV/AIDS,themajorityofpeopleaffectedbydementiaareolderadults.Whilebeinga
highlydistressingbehavior,society,nonetheless,appearstoplaceamuchlowervalueonolder
adultsascomparedwithyoungerpopulations.Thisislikelybecauseolderadultsareinlife’s
twilightyearsandolderadultsarenotactivelycontributingasmuchtosocietyduringtheir
lateryears.Anotherdifferenceisdementiaisnotatransmittablecondition.Whilethecauses
ofthevariousformsofdementiaarenotyetclearlyknown,itisnotaninfectiouscondition.
Thus,peoplearenotpanickedaboutbeinginfectedaswasandcontinuestobethecase
withHIV/AIDS.
DuringthepeakyearsoftheHIV/AIDSepidemic,peopleaffectedwiththeconditionaswellas
manyfamilymembers,friendsandotheradvocatestooktothestreetsinnon-violentmedia-
visiblecivilproteststodemandattentionanddollars.Althoughthereareover5millionpeople
intheU.S.livingwithdementia,theyandtheiradvocateshavenotturnedouton-massand
haveyettogettheattentionofournation’sleaders,eventhoughtherehasbeensignificant
mediaattentionaboutthedementiacrisisfacingournation.Whileelderlyindividualswith
dementiaareunlikelytotaketothestreetsincivilprotest,thereareanestimated200,000
Americanslivingwithyoungeronsetformsofdementia(Alzheimer’sAssociation,2015)which
iscomparabletothenumberofpeopleaffectedbyHIV/AIDSattheheightofthoseprotests.
Thelackofdramaticmedia-visiblecivilprotestshaverelegateddementiaadvocacyeffortsto
almostinvisiblestatusforsocietyingeneralandforelectedfederalandstateofficialsin
particular.ThemediaspotlightontherecentEbolacrisisillustratesthepowerofmediato
generateanationalresponse.Inremarkablyfastturnaround,PresidentObamaandtheU.S.
Congresscreatedandpassedlegislationauthorizing$5.4billioninemergencyfundingto
addressEbola.TheactualnumberofEbolacasesintheU.S.canbecountedononehand
makingthelargesseofthefederalfundingresponseespeciallybaffling.
Thereisarobustanddiversedementiacommunityoforganizations,coalitionsandinitiatives
dedicatedtodementiaintheU.S.includingtheAlzheimer’sAssociation,theAlzheimer’s
FoundationofAmerica,theAssociationforFrontotemporalDegeneration,theDementiaAction
31
Alliance,DementiaFriendlyAmerica,LEAD(LeadersEngagedinAlzheimer’sDisease),the
LewyBodyDementiaAssociation,UsAgainstAlzheimer’s,andstate-basedinitiativessuchas
ACTonAlzheimer’sinMinnesota.Imaginewhatcouldbeaccomplishedifalltheseentities
collaboratedandmarchedtogether,hand-in-hand,incivilprotestonCapitolHillversuseach
groupspeakingtothemembersoftheU.S.Congressindividually.
TheDAAbelievesthatitistimeto:garneramplefederalfundingfordementiasupports,care,
services,treatmentandresearchforpreventionandcure;addressandworktoeliminate
dehumanizing,stigmatizinganddiscriminatoryattitudesandpractices;developa
comprehensiveinfrastructurefortheawareness,education,support,servicesandcareneeded
sopeoplecanlivefullywiththecondition;andtransformthetraditionalmedicalsystemsand
practitioners’cultureandpracticestoaddressthehumanisticneedsofpeopleandfamilies
affected.TheDementiaActionAlliancestandsreadytocollaboratewithallwillingtomake
aunitedeffortareality.
~~~~~~~~~~“Weseektoworktowardstransformingourculturetoonehonoring
humandignity…Let’sbecompanionstogetheronthisjourney.”
Friedell and Bryden, 2001
~~~~~~~~~~
32
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InstituteonMedicine.(2001).CrossingtheQualityChasm:ANewHealthSystemforthe21stCentury.RetrievedonlineonJanuary2,2016athttps://iom.nationalacademies.org/~/media/Files/Report%20Files/2001/Crossing-the-Quality-Chasm/Quality%20Chasm%202001%20%20report%20brief.pdf.Keady,J.(1996).Theexperienceofdementia:Areviewoftheliteratureandimplicationsfornursingpractice.JournalofClinicalNursing,5:275-288.Kitwood,T.(1997).DementiaReconsidered:ThePersonComesFirst.Buckingham:OpenUniversityPress.Kitwood,T.,&Bredin,K.(1992).Towardsatheoryofdementiacare:personhoodandwell-being.AgeingandSociety,12:269-287.Kogan,A.C.,Wilber,D.,Mosqueda,L.(2015).Person-centeredcareforolderadultswithchronicconditionsandfunctionalimpairment:Asystematicliteraturereview.JournaloftheAmericanGeriatricsSociety,64(1):e1-e7.LewyBodyDementiaAssociation.WhatisLBD?RetrievedonlineonJanuary2,2016athttps://www.lbda.org/category/3437/what-is-lbd.htm.Malpas,J.(2012).Suffering,compassion,andthepossibilityofahumanepolitics.InJ.Malpas&N.Lickiss(Eds),Perspectivesonhumansuffering(pp.9-21).London,UK:Springer.MayoClinic.Healthy-lifestyle:Stressmanagement.RetrievedonlineonJanuary2,2016athttp://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/positive-thinking/art-20043950?pg=2&p=1.MayoClinic.Dementia,Definition.RetrievedonlineonJanuary2,2016athttp://www.mayoclinic.org/diseases-conditions/dementia/basics/definition/con-20034399.Medeiros,K.de&Basting,A.(2013).“ShallIcomparetheetoadoseofdonepezil?”:Culturalartsinterventionsindementiacareresearch.TheGerontologist,54(3):344-353.Mitchell,G.,Dupuis,S.&Jonas-Simpson,C.(2011).Counteringstigmawithunderstanding:Theroleoftheatreinsocialchangeandtransformation.CanadianTheatreReview,146,22-27.Mitchell,G.,Dupuis,S.,&Kontos,P.(2013).Dementiadiscourse:Fromimposedsufferingtoknowingother-wise.JournalofAppliedHermeneutics,June2013:1-19.Moyle,W.,Venturato,L.,Griffiths,S.,Grimbeek,P.,McAllister,M.,Oxlade,D.,&Murfield,J.(2011).Factorsinfluencingqualityoflifeforpeoplewithdementia:Aqualitativeperspective.AgingandMentalHealth,15:970-977.
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Osser,D.&Fischer,M.(2013).Managementofthebehavioralandpsychologicalsymptomsofdementia.NationalResourceCenterforAcademicDetailing.RetrievedonlineonOctober30,2015athttp://www.narcad.org/wp-content/uploads/2014/01/Dementia-Management-of-BPSD-Evidence-Document-Final.pdf.PewResearchCenter.(2010).Babyboomersretire.RetrievedonlineonOctober30,2015athttp://www.pewresearch.org/daily-number/baby-boomers-retire/.Power,G.A.(2014).Dementiabeyonddisease.Baltimore:HealthProfessionsPress.Power,G.A.(2015).Well-being:Astrengths-basedapproachtodementia.AustralianJournalofDementiaCare,publishedonlineApril2,2015.RetrievedonlineOctober30,2015athttp://journalofdementiacare.com/well-being-a-strengths-based-approach-to-dementia/.Russell,L.(2014).SociologyforHealthProfessionals.London:Sage.Sabat,S.R.,Johnson,A.,Swarbrick,C.,Keady,J.(2011).The‘dementedother’orsimply‘aperson’?ExtendingthephilosophicaldiscourseofNaueandKrollthroughthesituatedself.NursingPhilosophy,12:282-292.Sabat,S.(2001).TheexperienceofAlzheimer’sdisease:Lifethroughatangledveil.Oxford:Blackwell.Swaffer,K.(April22,2015).Whatdoeslivingwellmeantome?BlogCreatinglifewithwords:Inspiration,loveandtruth.RetrievedonlineOctober30,2015fromhttp://kateswaffer.com/2015/04/22/what-does-living-well-mean-to-me/.Swaffer,K.(2014a).Dementia:Stigma,language,anddementia-friendly.Dementia,13(6):709-716.Swaffer,K.(2014b).Reinvestinginlifeisthebestprescription.AustralianJournalofDementiaCare.PostedonlineDecember1,2014.RetrievedonlineOctober30,2015athttp://journalofdementiacare.com/reinvesting-in-life-is-the-best-prescription/.Sweeting,H.,&Gilhooly,M.(1997).Dementiaandthephenomenonofsocialdeath.SociologyofHealth&Illness.19(1):93-117.Taylor,R.(2013).Hello,mynameisRichardandIhaveAlzheimer’sdisease.SpeechdeliveredonAugust13,2009,9thAnnualPioneerNetworkConference,uponreceivingTheCarterWilliamsLegacyAward.TheEdenAlternative,definitionofwell-beingretrievedonlineOctober30,2015athttp://www.edenalt.org/about-the-eden-alternative/the-eden-alternative-domains-of-well-being/.
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APPENDIXI
WhitePaperContributors
Contributor AffiliationRobinAndrews,MA DevelopmentDirector,PositiveApproach,LLCSonyaSterbenzBarsness,MSG Principal,SonyaBarsnessConsultingJanBays,PT PhysicalTherapist,CreativeHealthSolutions-RehabServicesSooBorson,MD GeriatricPsychiatrist;HealthCareConsultant—ToolsforDementia
CapableHealthCareSystemsKittyBuckwalter,PhD,RN,FAAN ProfessorofResearch&DistinguishedNurseScientistinAging,
UniversityofIowa,CollegeofNursing;Co-Director,NationalHealthLawandPolicyResourceCenter-UI,CollegeofLaw
WalterCoffey,MPA President&CEO,LeadingAgeGeorgiaLyndaCrandall,GNP,RN Principal,LyndaCrandallConsultingEvyCugelman,RN LifeEnhancementSpecialist,Vivage—QualityHealthPartnersKathyDickman,DNP,FNP-BC FamilyNursePractitioner,SchoolofNursing,GeorgeMasonUniversityPatrickDoyle,PhD DirectorofDementiaServices,BrightviewSeniorLiving;ResearcherSherryDupuis,PhD Professor,DepartmentofRecreation&LeisureStudies,Universityof
Waterloo;Co-Director,PartnershipsinDementiaCareAllianceMichaelEllenbogen PersonLivingwithAlzheimer’s;InternationalDementiaAdvocate;AuthorAnneEllett,MSN Principal,MemoryCareSupportRichardFenker,PhD EmeritusProfessorofPsychology,TCU;President,CimarronInternational;
AuthorElayneForgie President&CEO,Alzheimer’sCareResourceCenter,Inc.SusanGilster,PhD,RN Principal,TheGilsterGroup;AuthorSandyHalperin,DDS PersonLivingwithAlzheimer’s;DementiaAdvocateBillKeane,MS,MBA,LNHA Advocate&ConsultantJulietKerlin,MA DirectorofResearch,IN2LNancyKriseman,LCSW Principal,GeriatricConsultingServices,Inc.;AuthorRosemaryLaird,MD ExecutiveMedicalDirector,FloridaHospitalforSeniors;Geriatrician,
FloridaHospitalMedicalGroup;MedicalDirector,TheCenterforFamilyCaregivers
NancyEmersonLombardo,PhD Principal,HealthCareInsights,LLCTruthfulLovingKindness PersonlivingwithMCI;BloggerKarenLove ExecutiveDirector,DAA;Founder,CCALAdvancingPerson-CenteredLivingKimMcRae,FCTA President,HaveaGoodLifeMicheleOchsner,PhD AsstDirector,SchoolofManagement&LaborRelations,RutgersUniversityChrisPerna President&CEO,TheEdenAlternativeJackiePinkowitz,MEd Co-Leader,DAA;Chair,CCALAdvancingPerson-CenteredLiving;
Principal,FuturAgeAlPower,MD Geriatrician;CertifiedEdenAlternativeEducator;ClinicalAssociate
ProfessorofMedicine,UniversityofRochesterPercellSmith,MSW,LNHA VP-ResidentLoyalty,TrinitySeniorLivingCommunitiesTeepaSnow,OT/R CEO,PositiveApproachRollinWright,MD,MA,MPH DivisionofGeriatrics,UniversityofPittsburg
38
APPENDIXII
♦ I am a person*. Know me and relate to me as a person with a unique background, life
history, interests and capabilities. [*Words matter. When you call me a ‘patient,’ ‘victim,’
or ‘sufferer,’ I feel minimized.]
♦ Understand that my autonomy, choices, dignity, reciprocal relationships, privacy and
self-determination are fundamental to my well-being.
♦ Support my holistic emotional, social, physical and spiritual dimensions.
♦ Promote ways I can continue to experience personal growth and development through
purpose, meaning, relationships and enjoyment in my daily life.
♦ Recognize that my personal goals, measures of success and interests may change over time
and may not be the same as yours.
♦ Recognize that choice may have risks — a normal part of everyone’s life.
♦ Partner with me, utilize my strengths and provide the right amount of support and
opportunities I need to achieve my goals.
♦ I am trying to communicate the best I can; understand that my verbal and physical
expressions are my way of communicating. I may say or do something I regret.
♦ Understand that my personhood may become increasingly hidden but not lost.
♦ Place my needs before tasks and understand that we need to work together at my pace.
♦ Help me stay connected to what is important to me.
____________________________
The DAA “Person-Centered Dementia Values and Principles” were inspired by the Pioneer Network’s set of Values and Principles.
Person-Centered Dementia Values and Principles
