Alzheimer'sDisease|Dementia

DayintheLifeProject
ChronicIllness&EndofLifeCare

NRS331
Winter2012
NissanaAkranavaseri
LucianaArcas
HeatherBell

UnderstandingDementiaand
Alzheimer'sDisease
Dementiaisnotaspecificdisease.Itisageneralterm
foragroupofcognitivedisorderstypicallycharacterized
bythelossofcognitivefunctioningthinking,
remembering,andreasoningandbehavioralabilities
thatinterferewithapersonsdailylifeandactivities.
Dementiaisoftenincorrectlyreferredtoas"senility,"
whichreflectsthefalsebeliefthatseriousmentaldecline
isanormalpartofaging(CentersforDiseaseControland
Prevention,2011).

Dementiaiscategorizedintotwocategories:
corticaldementias,subcorticaldementias,depending
onpartofthebrainthatisaffected(WebMD,2010).

Manyconditionsanddiseasescancausedementia.
Someformsofdementiacanbetreated.These
includedementiacausedby:
Chronicalcoholordrugabuse
Tumorsthatcanberemoved
Subduralhematoma
Normalpressurehydrocephalus
VitaminB12deficiency
Hypothyroidism
Hypoglycemia

Nontreatablecausesofdementiainclude:
Alzheimer'sdisease
Vasculardementia
DementiasassociatedwithParkinson's
diseaseandsimilardisorders
AIDSdementiacomplex
CreutzfeldtJakobdisease

Themostcommoncausesofdementiainolderpeople
areAlzheimersdiseaseandvasculardementia,
respectively(NationalInstituteonAging[NIA],2012).

Thishandoutdiscussesdementiaingeneral,butmost
oftenreferstoAlzheimersdisease,asthisisthemost
indepthstudiedandreferencedcauseofdementia.
Theuseofdementiareferstothegeneralconcept,
whereasAlzheimersdiseaseisusedwhenspecifically
discussingthatcondition.

http://www.caregiver.org/caregiver/

http://www.alz.org/national/documents/checklist_10signs.pdf

Alzheimer'sDiseaseisanirreversible,progressive
braindiseasethatattacksthebrain'snervecellsand
slowlydestroysmemory,language,thinkingskills,and
eventuallytheabilitytoperformactivitiesofdaily
living.Itaccountsfor50to80percentofdementia
cases.Inmostpeople,thesymptomsfirstappearafter
age65andolder.However,earlyonsetofthedisease
canappearinindividualsintheir40sor50s.Themost
importantriskfactorsforthedevelopmentof
Alzheimer'sareage,familyhistory,andheredity
(Alzheimer'sAssociation,2012a).

Althoughscientistsdonotyetfullyunderstandhow
theAlzheimersdiseaseprocessbegins,theybelieve
therearetwotypesofabnormallesionsinthebrains
ofindividualswithAlzheimersdisease.Accordingly,
betaamyloidplaquesandneurofibrillarytanglesare
developedthroughoutthebrainandblock
communicationamongnervecells.Thesestructures
disrupttheprocessesthatcellsneedtosurvive,
resultinginthedeathofneurons.Damagelater
spreadstothehippocampus,whichisessentialin
formingmemories.Thesedestructionscausethe
affectedbrainregionstoshrink,whichresultsin
memoryfailure,personalitychanges,problems
carryingoutdailyactivitiesandothersymptoms
ofAlzheimer'sdisease(AmericanHealthAssistance
Foundation[AHAF],2012).

FactsandFigures
Figuresrelatedtotheprevalenceofdementiavary
considerably;however,theprevalenceisgenerally
acceptedasaround8%ofthoseolderthan65years
(internationallyspeaking),anditisprojectedthatthe
numberofcasesgloballywillincreasetomorethan
80millionby2040(Ferrietal.,2005).Recentresearch
alsoindicatesthattheincidenceofmixeddementia,
whichcombinessymptomsandmanifestationsof
Alzheimersdiseasewithothercausesfordementia,is
muchgreaterthanpreviouslythought.
AccordingtotheAlzheimer'sAssociation,asof2011,
5.4millionAmericansarenowlivingwithAlzheimers
disease.Ofthosewiththedisease,approximatelytwo
thirds,or3.4million,arewomen.Americanswhoare
65andover,or1in8Americans,haveAlzheimersand
nearlyhalfofthosewhoare85andolderhavethe
disease.Infact,anAmericandevelopsAlzheimers
diseaseevery69seconds.Mostpeoplesurvivean
averageoffourtoeightyearsafteranAlzheimers
diagnosis,butsomeliveaslongas20yearswiththe
disease.By2050,asmanyas16millionAmericanswill
havethedisease(Alzheimer'sAssociation,2012a).

http://www.alz.org/downloads/Facts_Figures_2011.pdf

Giventheprojectedincreaseintheagingpopulation
withdementiaandAlzheimer'sdisease,itisclearlya
healthissueofincreasingimportance.Itisundeniably
anareaofhealthcareinwhichnursescanmakea
significantcontribution.

http://www.alz.org/braintour/plaques_tangles.asp

http://www.alz.org/braintour/blood_vessels.asp

SymptomsandProgressionofAlzheimer's
SymptomsofAlzheimersaredividedintotwocategories:cognitiveorintellectual,andpsychiatric.Forcognitiveor
intellectualsymptoms,the4AsofAlzheimer's:amnesia,aphasia,apraxia,agnosiaareprevalent.Amnesiaisdefined
aslossofmemory,ortheinabilitytorememberfactsorevents.Aphasiaistheinabilitytocommunicateeffectively.
Apraxiaistheinabilitytodopreprogrammedmotortasks,ortoperformactivitiesofdailylivingsuchasbrushing
teethanddressing.Lastly,agnosiaisanindividual'sinabilitytocorrectlyinterpretsignalsfromtheirfivesenses.For
thepsychiatricsymptoms,themajorpsychiatricindicationsincludepersonalitychanges,depression,hallucinations
anddelusions(AlzheimersFoundationofAmerica,2010).
ProgressionofAlzheimer'sisclassifiedintosevenstagesasthediseaseunfolds.Noteveryoneexperiencesthesame
symptomsorprogressatthesamerate.Thisframeworkprovidesageneralideaofthecourseofthedisease.

SevenStageFramework
Stage1:Noimpairment(Normalfunction)
Stage2:Verymilddecline(Earlysignsormaybenormal
agerelatedchanges)
E.g.feelingofhavingmemorylapses
Stage3:Milddecline(EarlystageAlzheimer's
canbediagnosedinsomeindividuals)
E.g.othersnoticingcognitivedifficulties
Stage4:Moderatedecline(MildAlzheimer's)
E.g.clearcutsymptomsinseveralareas
Stage5:Moderatelyseveredecline
(ModerateAlzheimer's)
E.g.needingsomehelpwithdailyactivities

Stage6:Severedecline(ModeratelysevereAlzheimer's)
E.g.needingextensivehelpwithdailyactivities
Stage7:Veryseveredecline(LatestageAlzheimer's)
E.g.losingabilitytorespondtoconversation,
movement,environment

http://www.alz.org/braintour/healthy_vs_alzheimers.asp

DiagnosisofAlzheimer's
AccordingtotheNationalInstituteonAging,Alzheimersdiseasecanbedefinitivelydiagnosedonlyafterdeath
byanautopsyofthebraintissue.However,clinicianscannowfairlyaccuratelydetermineanddiagnosethe
"possible/probable"Alzheimer'sdiseasebyusingseveralmethodsandtools.Thesetechniquesmayincludetaking
acompletemedicalhistoryandconductinglabtests,aphysicalexam,brainscans,andneuropsychologicaltests
thatgaugememory,attention,languageskills,andproblemsolvingabilities.Thesetestsmayberepeatedtogive
cliniciansinformationabouthowthepersonsmemoryischangingovertime(NIA,2012).

TreatmentofAlzheimer's
Presently,thereisnocureforAlzheimer'sdisease.However,therearemedicationsthatcanhelpcontrolitssymptoms
andmanageagitation,depression,orpsychoticsymptomsthatmayoccurasthediseaseprogresses(AHAF,2012).

TheU.S.FoodandDrugAdministration
(FDA)hasapprovedseveralmedications
forthetreatmentofAlzheimersaslisted
inthetable(Alzheimer'sAssociation,
2012b).Inaddition,nondrugtreatments
suchasphysicalexercise,changesin
nutritionandlifestyle,mentalexercise,
cognitivestimulationand
reminiscencetherapyareprovedtobe
beneficialtohelpmanagesome
behavioralsymptomsofindividualswith
http://www.ahaf.org/alzheimers/treatment/common
Alzheimers(Haines,2010).

LivingwithDementiaandAlzheimer's
PersonalResponsetoIllness

AcceptanceandCoping

Learningtolivewithadiagnosisofdementiaisadifficult
processforthosecloselyinvolved.Somepeople
experienceperiodsofdepression.

Copingstrategiesareimportantfortheindividualwith
dementiafromanycause.Successfulcopingstrategies
include:usingmemoryaids,takingnotes,orbyavoiding
sociallystressfuloccasions(KeadyandNolan,1995).
Reducinghouseholdandexternalactivitiesmaybe
helpfulincopingwiththeeffectsofdementiafromany
cause,butalsoputsthepatientsatincreasedriskfor
socialisolationandforlackofsufficientcareofself.In
theabsenceofspecificcurativeoptions,manypatients
worktomaintaintheirgeneralhealthandwellbeing;
takingphysically,intellectuallyandemotionallyexercise
classes,meditationandlisteningtorelaxationtapesand
adequatenutrition(GilmourandHuntington,2005).

Adiagnosisofadementingillnessonapersonsself
identityisprofound.Individualsfeelstupidorforgetful
(BurgenerandDickersonPutnam,1999),ashamed
(McGowin,1994),andhaveasenseofdreadaboutlosing
freedom(Davis,1989).Individualsalsoequatedtheir
diagnosiswithmadness(GilmourandHuntington2005).
IndividualsdiagnosedwithAlzheimersdiseaseor
dementiafromanycauseoftendonotfeeltheyhave
enoughinformationaboutthedisease(Marzanski,2000).
Someindividualswillactivelyseekoutinformationwhile
othersonlywanttoknowwhatimmediatelyappliesto
thepresentsituation.Mostpatientsareawareofthe
onsetofmemorylossasaslowandsubtleprocess.Some
areonlygivenstatisticsaboutprognosis,andsomeare
exposedtonegativemediaportrayalsofindividualswith
Alzheimersdiseaseordementiafromanycause,making
comingtotermswiththediagnosismoredifficult
(GilmourandHuntington2005).Providinginformation
abouttheprogressionoftheillnessandtheresources,
copingstrategies,andsupportincludedinthishandout
willhelptheindividualcometotermsandreducefear
andanxiety(Phinney,1998)surroundingthediagnosis
andforwhatthefutureholds.

http://alzheimerscoming.com/wp
content/uploads/2012/02/alzheimers_care_grandmother.jpg

Stayinginonesownhomeisextremelyimportantto
mostpatientsdiagnosedwithAlzheimersdisease.
Oftenthepersonsfamilyandfriendsquestionthe
abilityofthepatienttocopeintheirownhome
(GilmourandHuntington,2005).Havingtomovefrom
homeandlosingfamiliarobjectsandvisibleprompts
thatmayjogmemoriesincreasestheindividualssense
ofloss.Ifamovebecomesnecessary,providingthe
individualwithoptionsandchoicesinfornewliving
arrangementscanrestoresomedignityandsenseof
controloverthepersonsownlife.

http://www.biokineticspt.com/wpcontent/uploads/2012/
01/41ede_alzheimersdiseasemothers.jpg

EffectsonRelationships
Alzheimersdisease,andotherformsofdementia,
substantiallyimpactinteractionswithfriends,familiesand
healthcareworkers.Beinginameaningfulrelationshipcan
keeppatientsmotivatedandinvolvedintheircare,but
maintainingmeaningfulrelationshipsisdifficult.Anindividual
withdementiafromanycause,aswellasfriendsandfamily
members,mayexperiencefrustrationwhennotableto
completeusuallystraightforwardtasks,remembermeetings,
orfollowinstructions.Supportiveaspectsofrelationships
includeprovidingfeedbacktokeeppeopleontrack,as
wellasmanagingaspectsoftasksthatpatientscannolonger
performthemselves.Inorderforhelptobemosteffective,
thepatienthastodemonstrateanabilitytocopewiththe
ideaofhavingtogetassistanceinthefirstplace.Abilityand
willingnesstocommunicateabouttheindividualsownneeds
andproblemsareagreatadvantage(Gilmourand
Huntington,2005).

http://www.hobsonsbay.vic.gov.au/page/Images/CRimage_Web.jpg

Dementiafromanycausecanalsoaffecttherelationship
betweentheindividualandhealthcareprovider;the
individualneedstobetreatedwithrespectbyhealth
professionals,tonotbejustanumberoranameon
apieceofpaper(Marzanski,2000).

FamilySupport
ItisnowrecognizedthatpeoplewithAlzheimersdisease,
ordementiafromanycausehavevaryingdegreesofinsight
intotheircondition.Apartnershipapproachbetweenpeople
withdementia,theirfamiliesandhealthcareprofessionalsis
advocated.Thispartnershipwillincludehelpingtheindividual
acceptthelossesandchangesthathaveoccurredin
themselves,aswellasacceptingthechangesthatwill
progressivelyoccurinthefuture.Familymemberscan
supportthisprocessbyworkingwiththepersontosetupand
maintainsupportsystems.Assymptomsprogress,theperson
willneedincreasinglevelsofsupportfromfamilymembers
andadditionalcaregivers.Earlyandaccuratediagnosisis
beneficialasitcanhelppreservefunctionforsometime,
eventhoughtheunderlyingdiseaseprocesscannotbe
changed.Italsohelpsfamiliesplanforthefuture,make
livingarrangements,takecareoffinancialandlegalmatters,
anddevelopsupportnetworks.Additionally,itmayhelp
peoplegetinvolvedinclinicaltrialsandalternative
intervention(NIA,2012).

http://www.alz.org/downloads/Facts_Figures_2011.pdf

SocialSupport
Thepersonwithdementiawillappreciatesupportfromothersinmaintainingrelationships,bothwithfamily
membersandthoseinhisorhercommunity,andtoremainintheirownhomeaslongaspossible.Familyand
friendscanhelpwithhouseandyardwork,maintainasafeenvironment,andmaintainanetworkofsocial
relationships.Supportingthepersontocontinueparticipatinginthecommunitymayincluderemindersabout
andtransportationtocommunityevents,encouragementandlogisticalhelpinvisitingneighbors,friends,and
relatives,andfindingwaystoensurephonecallsarereturnedtoothersinatimelymanner.

FunctioningatWork
Astheworkingpopulationages,dementiamaybecomemorecommonintheworkplace(Mann,2012).Declining
functionalityintermsofchangesinshorttermmemory,judgment,problemsolving,communication(Copstead
andBanasik,2011)willaffectjobperformance.Ifleftunattended,thisdeclinecanleadtoanoveralldeclineinjob
performance,adecreaseinresponsibilities,andfinallybeingletgo.Medicationscanhelpslowthisprogression,
andapersonmaybeeligiblefordisabilityassistanceiftheproblemisaddressedbeforeapersonhasserious
problemsonthejob(Mann,2012).Forthesereasons,beingawareofcognitiveandmemorychangeswhenthey
appearonthejobandaddressingthemwithahealthcareproviderisveryimportantforpreservingemployment.

BehaviorSupport
Forfamilies,changesinbehaviorareoftenthemost
difficultofthesymptomsofdementia.Thesechangesare
oftentheresultofdeterioratingbraincells,butalsomay
bebroughtonbymedications,illness,orchangesinthe
environment(AlzheimersAssociation,2012b).Some
changesinbehaviormaybecomedangerous,inappropriate
socially,orupsettingtotheindividualwithdementia.These
behaviorsmayincludewandering,beingrestless,disrobing,
climbingoutofbed,handwringingorhandwashing.
Cursing,yelling,andevenviolentbehaviormayoccur
(GulanickandMyers,2011).Itisimportanttohelpfamily
memberstounderstandthesebehaviorsarepartofthe
disease,nottheperson.
Themainpointsthatwillhelpfamilymemberstodeal
withbehaviorchanges:

Provideconsistencyandcomfortinthepersons
routinesandenvironment.

Helpthepersontogetenoughrest,balanced
nutrition,goodgroomingandhygiene.

Whenconfusionordifficultiesinbehavioroccur,
haveaplantoaddressthemandreturnthe
persontoastateofcalmandwellbeing.

http://www.benefitsofhome.com/images/consult.jpg

Thehealthcareproviderscanhelpbyavoiding
medicationsthatwillincreaseagitationor
confusion.Theycanalsohelpthefamilydiscuss
waystoprovideanenvironmentwherethe
personiscomfortablephysically:proper
temperature,dry,withouttoomuchnoise.
Findsimpleactivitiesthathelpthepersondivert
attention:foldingtowels,usingworrybeads,
walking,etc.Besuretoallowthepersonpersonal
space,andspacetoexpresstheirfeelingswith
words(GulanickandMyers,2011).Ifthese
measuresarenotworking,thefamilyor
caregivermaycontactthehealthcareprovider
formoreoptions.

SafetyandSupportwithADL
Personswithdementiawilloftenreachapointwheretheyneedsomeassistancewithactivitiesofdailyliving(ADL).
Areasofassistanceintheearlystagesincludeeating,swallowingandweightloss;inlaterstagesbladderandbowel
control,andwalking(CopsteadandBanasik,2011).Thehealthcareprovidercanperformanassessmentofwhat
areasofindependencewillneedsomesupport,andreaddressascognitiveabilitieschange.Atoolinperformingthis
assessmentistheKatzIndexofIndependenceinActivitiesofDailyLiving(Wallace,2007).Tworeasonsforconcern
aboutdifficultiesinADLaresafetyandriskforinfection,asthesearecommoncausesofdeathrelatedtodementia
(CopsteadandBanasik,2011).
Thefamilymembercanhelpthepersoncreateavisiblyobviousschedulewrittendownforthingslikeappointments,
medications,andanythingelseforwhichthepersonisresponsible.Regularlyhavingsomeonecheckinwiththe
personcanaddressemergingchangesinindependenceandkeeptheenvironmentsafe.Safetymeasuresinclude
removingtriphazards,installingreminderalarmsforthestoveorotherappliances,andinstallingdeadboltlockson
doors,aslongassomeoneelseisstayinginthehomewiththeperson(AlzheimersAssociation,2012c).

Resources
ManyoftheseresourcesarefocusedonpeoplewithAlzheimersdisease,buttheycontainusefulinformation
applicabletodementiafromanycause.

ResourcesforIndividuals
Alzheimer'sAssociationOregonChapter
24/7Helpline:800.272.3900
http://www.alz.org/oregon

Alzheimer'sFoundationofAmerica
Phone:866.232.8484
http://www.alzfdn.org

AlzheimersNetworkofOregon
http://alznet.org

AmericanHealthAssistanceFoundation
http://www.ahaf.org/alzheimers/livingwith

OHSULaytonAging&Alzheimer'sDiseaseCenterHome
http://www.ohsu.edu/xd/research/centersinstitutes/neurology/alzheimers

NationalInstituteofAging(NIAonNIH)
AlzheimersDiseaseEducationandReferralCenter
Phone:800.438.4380
http://www.nia.nih.gov/alzheimers

ResourcesforCaregivers
Alzheimer'sCommunityCare
http://www.alzcare.org/SpecializedAdultDayCenters

CNNAlzheimer's:CaringforCaregivers
http://www.cnn.com/2011/OPINION/04/28/hirsch.alz.caregivers/index.html

FamilyCaregiverAlliance
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=567

References
AlzheimersAssociation(2012a).2011Alzheimersdiseasefactsandfigures.Retrievedfrom
http://www.alz.org/downloads/Facts_Figures_2011.pdf
Alzheimer'sAssociation.(2012b).Alzheimer'sdisease&dementiaguide.Retrievedfrom
http://www.alz.org/alzheimers_disease_what_is_alzheimers.asp
AlzheimersAssociation.(2012c).SafetyCenter.Retrievedfromhttp://www.alz.org/safetycenter/we_can_help_safety_issues.asp
Alzheimer'sFoundationofAmerica,Alzheimer'sDiseaseResearch.(2010).AboutAlzheimer's.Retrievedfrom
http://www.alzfdn.org/AboutAlzheimers/treatment.html
AmericanHealthAssistanceFoundation.(2010).Alzheimer'sdisease.Retrievedfromhttp://www.ahaf.org/alzheimers
Balch,P.A.(2010).AlzheimersDisease.InPrescriptionfornutritionalhealing(pp.193200).NewYork:PenguinGroup(USA).
Burgener,S.,DickersonPutmanJ.(1999).Assessingpatientsintheearlystagesofirreversibledementia:Therelevanceofpatient
perspectives.JournalofGerontologicalNursing,25,3341.
CentersforDiseaseControlandPrevention.(2011).Dementia/Alzheimer'sdisease.Retrievedfrom
http://www.cdc.gov/mentalhealth/basics/mentalillness/dementia.htm
Copstead,L.E.,Banasik,J.L.(2010).Pathophysiology(4thed.).St.Louis,Missouri:SaundersElsevier.
Davi,sR.(1989).MyJourneyintoAlzheimersDisease.Illinois:TyndaleHousePublishers.
Ferri,C.P.,Prince,M.,Brayne,C.,Brodaty,H.,Fratiglioni,L.,Ganguli,M.,...andAlzheimer'sDiseaseInternational(December17,2005).
Globalprevalenceofdementia:aDelphiconsensusstudy.TheLancet,366(9503),21122117.doi:10.1016/S0140
6736(08)613458
Gilmour,J.A.,andHuntington,A.D.(November2005).Findingthebalance:Livingwithmemoryloss.Internationaljournalofnursing
practice,11,118124.
Goldsmith,M.(1996).Hearingthevoiceofpeoplewithdementia:Opportunitiesandobstacles.London:JessicaKingsleyPublishers.
Gulanick,M.,Myers,J.L.(2011).NursingCarePlans(7thed.).St.Louis,Missouri:ElsevierMosby.
Haines,C.(2010).March2010AARPBulletin:NonmedicaltherapiesforAlzheimersdiseasegetscientificbacking.Retrievedfrom
http://www.aarp.org/relationships/caregiving/info03
2010/nonmedical_therapies_for_alzheimer_s_disease_get_scientific_backing.html
Hoch,DanielB.(2010).MemoryLoss.MedlinePlus.Retrievedfromhttp://www.nlm.nih.gov/medlineplus/ency/article/003257.htm
Keady,J.,NolanM.I.(1994).Assessingcopingresponsesintheearlystagesofdementia.BritishJournalofNursing,4,306313.
Mann,D.(2010).Agingworkforcemeansdementiaonthejobcouldrise.CNN.com.Retrievedfrom
http://www.cnn.com/2010/HEALTH/11/12/health.dementia.rise.job/index.html
Marzanski,M.(2000).Wouldyouliketoknowwhatiswrongwithyou?Ontellingthetruthtopeoplewithdementia.JournalofMedical
Ethics,26,108114.
McGowin,D.(1994).Livinginthelabyrinth.England:MainsailPress.
NationalInstituteonAging.(2012).AboutAlzheimer'sdisease:Alzheimer'sbasics.Retrievedfrom
http://www.nia.nih.gov/alzheimers/topics/alzheimersbasics#dementia
Onega,LisaL.(2008).Helpingthosewhohelpothers:Themodifiedcaregiverstrainindex.AmericanJournalofNursing.108(9).
Retrievedfromhttp://www.nursingcenter.com/_PDF_.aspx?an=0000044620080900000026
Phinney,A.(1998).Livingwithdementia:Fromthepatientsperspective.JournalofGerontologicalNursing,24,815.
Plassman,B.L.,Langa,K.M.,Fisher,G.G.,Heeringa,S.G.,Weir,D.R.,Ofstedal,M.B.,...Wallace,R.B.(2007).Prevalenceofdementiainthe
UnitedStates:theaging,demographicsandmemorystudy.Neuroepidemiology,29(12),125132.doi:10.1159/000109998
Wallace,M.(2007).Katzindexofindependenceinactivitiesofdailyliving(ADL).Trythis:Bestpracticesinnursingcaretoolderadults.
GeneralAssessmentSeriesPt.2.Retrievedfromhttp://consultgerirn.org/uploads/File/trythis/try_this_2.pdf
WebMD.(2012).Brain&nervoussystemhealthcenter.Typesofdementia.Retrievedfromhttp://www.webmd.com/brain/typesdementia