nurse prac**oner educaon in developmental disabilies ... 4.pdf · nurse prac**oner educaon in...
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NeurologicComplica/onsinAdultswithI/DD
SethM.Keller,[email protected]
NursePrac**onerEduca*oninDevelopmentalDisabili*es
WebinarSeries
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Outline� Epilepsy� MovementDisorders� GaitDysfunction� Spasticity� Dementia
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EpilepsyinI/DD
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STATISTICS� 3%ofthepopulationhasI/DD� 10-20%ofallI/DDindividualshaveepilepsy� 50%ofindividualswithI/DD&CPhaveepilepsy(Morecommonintetraorhemiplegicthandystonicordiplegic)
� 21%ofI/DDwithIQ>50haveepilepsy� 50%ofI/DDwithIQ<50haveepilepsy� 40%ofindividualslivinginlargeresidentialfacilitieshaveepilepsy
Pellock JM, Hunt PA. A decade of modern epilepsy therapy in institutionalized mentally retarded patients. Epilepsy Res.
Gates, Huf, et al. Epilepsy and Behavior,2001,2, 563-567.
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Difficul*eswithSeizureCare� Refractoryepilepticsyndromes� Multipleseizuretypes� Frequentstatusepilepticusandclusters� LifelongAEDuse� Polypharmacy(epilepsyandmedical)� Side-effectsarefrequentbuthardtodetect� Side-effecttolerance;statusquo� Co-occurrencewithchallengingbehaviorsincludingAutism� Challengesinobtainingdataandcommunication� Transitioningofcare� Staffknowledge/training� Acuteseizurecare
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IssuesinDevelopingOp*malPlansforSeizureCare
� Allparoxysmaleventsarenotseizures� Allseizuresarenotdangerous� Notallseizuresarerefractory� Multipledrugsareusuallynotnecessary� Side-effectsareveryimportant� Seizuresmaynotbelifelong� Datacollectionandcommunication
� Seizuretracker.com� Expectationsfrompatient/families/staff/providers
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Differen*alDiagnosisofSeizures� Syncope� Behavior� Toxicity� Pseudoseizures� Panicattacks� Hypoglycemia� Vertigo
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EpilepsyTreatmentsTreatment
AEDs
Ketogenic Diet Epilepsy Surgery VNS Therapy
Age
Children Adults
Primarily children Children Adults 12 and older
Indication
Specific AEDs for specific seizure types
All seizure types Pharmacoresistant or localization-related epilepsy Pharmacoresistant epilepsy, partial seizures
Efficacy �64% sz freedom1
54% pts >50% sz reduction at 3 months2
�70% in select patients sz freedom3
43% of pts >50% sz reduction at 3 years4
Side Effects Vary by AED, typically CNS- and endocrine-related
Lipid disorders, ketoacidosis
Cognitive effects, surgery-related risks Voice alteration, cough, pharyngitis, dyspnea
1Brodie MJ, Kwan P. Neurology. 2002;58(suppl 5):S2-S8. 2Vining EP, et al. Arch Neurol. 1998;55:1433-1437. 3Van Ness PC. Arch Neurol. 2002;59:732-735. 4Morris GL III, Mueller WM. Neurology. 1999;53:1731-1735. 5Renfroe JB, Wheless JW. Neurology. 2002;59(suppl 4):S26-S30.
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Tonic Tonic-clonic Myoclonic Atonic Infantile
Spasms Absence
Pregabalin, Phenytoin,
Carbamazepine, Phenobarbital,
Gabapentin, Tiagabine,
Oxcarbazepine, Lacosamide
ACTH Vigabatrin Topiramate Zonisimide
Ethosuximide
Valproate, Lamotrigine, Topiramate, Zonisimide Levetiracetam, Felbamate, Rufinamide, Clobazam
Generalized Partial Simple
Complex Secondarily Generalized
An*epilep*cDrugOp*ons
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Treatment/Evalua*onSequenceforPharmacoresistentEpilepsy
4%
13%47%
36%
S z - f re e with 1s t A E D
S z - f re e with 2 nd A E D
S z - f re e with 3 rdA E D /P o lythe ra pyP ha rm a c o re s is ta n t
1st Monotherapy AED Trial
2nd Monotherapy AED Trial
Epilepsy Surgery/VNS Therapy/ Neuropace Evaluation
Resective Surgery Stimulator Therapy
3rd Monotherapy/Polytherapy AED Trial
Polytherapy AED Trials
Kwan P, Brodie MJ. NEJM;342:314-319.
Strongly consider videoEEG Monitoring
Epilepsy
Psychogenic, migraine, syncope, sleep disorders, movement disorder’s, etc.
Non-epileptic
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Seizure control at what cost?
� Toxicity� Cognitive� Physiologic� Behavioral
� Financialconsiderations
Psychiatric adverse events during levetiracetam therapy M. Mula, MR. Trimble, et al
Neurology. 2003 Sep 9;61(5):704-6
Topiramate and Psychiatric Adverse Events in Patients with Epilepsy
M. Mula, MR. Trimble, et al Epilepsia. 2003 May;44(5):659-63.
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BehavioralOutcomeswithElimina*ngSeda*ngAgents
� Improvedalertnessandinteraction
� Improvedmaladaptivebehavior
� Reducedpsychotropicmedicationusage
Poindexter AR, et al. Am J Ment Retard. 1993;98:34-40. Coulter DL. AM J Ment Retard. 1988;93:320-327 Clancy RR et al. Ann Neurol. 1991;30:493.
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AcuteSeizureCare� Recognitionoftheeventandappreciatewhensignificant� Clusters,StatusEpilepticus,Seizuretypes
� Firstaid� UsageofVNSmagnet� Diastatacudial� 9-1-1� Firstrespondercare� EDandhospitalcare� Documentdetailsoftheevent
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SuddenUnexpectedDeathinEpilepsySUDEP
� Maybethecauseofdeathwhen:� Ahealthypersonwithepilepsydiessuddenlywithoutdrowningortrauma
� Thepersonmayormaynothavehadaseizurebeforedeath
� Nootherreasonfordeathisfounduponexamafterdeath� Personwasnotusingillegaldrugs(example:cocaine)
� Persondidnothaveaheartattack
� SomecommontheoriescausingSUDEPinclude:� Heartarrhythmias� Breathingtrouble� Brainshutdown
� 1outof1,000patientswithepilepsydieunexpectedlyeachyear
� Inthosewithuncontrolledepilepsy,riskincreasesto1outofevery150people
� RiskofSUDEPincreaseswhen:� Seizuresarenotwellcontrolled(treatmentresistantepilepsy)
� Treatmentresistantepilepsy=failureof2roundsofappropriateandtoleratedseizuremedication� Treatmentresistantepilepsyiscommoninpatientswithautism
� Apatientsuffersfromgeneralizedtonic-clonicseizures
� Seizureshappenatnightwhenthepersonissleeping
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MovementDisordersinI/DD
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MovementDisordersClassifica*on
� HyperkineticvsAkinetic� Bytypeofmovement;dyskinesia,myoclonic,tremor,dystonia,chorea
� Ageofonset� Acquiredvsgenetic� Behaviorvsorganic
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ExtrapyramidalEffects� TardiveDyskinesia� Akathisias� Parkinson’s� DystonicRx
0.5%-56% TD in long term usage of Neuroleptics
JournalofIDD,June2008;33(2):171-176
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Management� Stopoffendingagent� Switchagent� Reducedosage� AddBenztropine,Diphenhydramine� L-DopaTherapy
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GaitDysfunc/onandSpas/cityinI/DD
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NormalvsPathologicChangesofGaitinAdultswithIDD
� Whatisbaselineandwhydidpastdysfunctionoccur?
� Whatnormalagingchangesareexpected?� Howtodiscernpathologicchanges� Whataretherisksandcomplicationsofalteredgaitandspasticity?
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AbnormalGaitandIDD� Pain� ImpairedJointMobility(arthritis,contractures)� Muscleweakness(Spinabifida,lowtone)� Spasticity(stroke,cordlesion,CerebralPalsy)� Sensory/balancedeficit(neuropathy,stroke,vision,vestibular)� Impairedcentralprocessing(dementia,stroke,delirium,drugs)� CognitiveImpairment� Syndromespecific(Downsyndrome,FASD,FragileX)
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ConsequencesofGaitDysfunc*on� Falls
� Injury,fracture,CHI,hospitalizations� Pain� Osteoporosis� Riskstoskinintegrity,cardiopulmonarysystem� DVT’s/PE’s� ADL’s� QOL/Independence� Impactuponcareteam
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UpperMotorNeuronSyndromeAgroupofsymptomsthatmaybecausedbydamageorinjury
tomotorneuronpathwaysorbrainregionsthatcontrolmovement2,3
2 Katz RT, Rymer WZ. Spastic hypertonia: mechanisms and measurement. Arch Phys Med Rehabil 1989; 70:144-55 3 O'Brien CF, Seeberger LC, Smith DB. Spasticity after stroke. Epidemiology and optimal treatment. Drugs Aging 1996; 9:332-40 4 Young RR ,Wiegner AW. Spasticity.ClinOrthop Relat Res 1987; 50-62
PositiveSymptoms4 Negative Symptoms4
Characterization Muscleoveractivity Muscleunderactivity
Examples Spasticity,clonus,flexor/extensorspasm,hyper-reflexia,dystonia,andrigidity
Decreaseddexterity,weakness,paralysis,fatigability,andslownessofmovement
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TreatmentGoals
1 Gormley ME, Jr., O'Brien CF, Yablon SA. A clinical overview of treatment decisions in the management of spasticity. Muscle Nerve Suppl 1997; 6:S14-20
2 Barnes MP. Spasticity: a rehabilitation challenge in the elderly. Gerontology 2001; 47:295-9
MajorClassesofTreatmentGoalswithExamplesofEach1,2
• Improveactivitiesofdailyliving(e.g.,dressing,hygiene)• Reducepain• Enhanceeaseofcare• Improvelimbposition• Improvegait
FunctionalObjectives
• Increaserangeofmotion• Reducetone• Reducespasm
TechnicalObjectives
• Preventcontracture• Preventskinmaceration• Preventskinulcers
PreventiveObjectives
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Tradi*onalStep-LadderApproachtoManagementofSpas*city
NeurosurgicalproceduresOrthopedicproceduresNeurolysisOralmedicationsRehabilitationTherapyRemovenoxiousstimuli
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Spas*cityTreatmentTeam
Rehabilitative Therapy -Physiatry
-Physical Therapy -Occupational Therapy
Neurologist
Patient
Primary Care Provider
Nursing
Family
Direct Care Staff
Orthopaedic Surgeon
Neurosurgeon
Anesthesiologist
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Demen/ainI/DD
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Func*onalDecline
� Aprocessinwhichapersonisunabletoperformatthesamelevelofactivityaspreviouslyperformed� Cognitive� Physical
� Whatisnormativeagingandwhatispathologic?� FunctionaldeclinehasanimpactupononesADL’s,QOL,andneedsforsupports
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Functional Decline
Cognitive Neuromotor Psychiatric
General Medical
Dementia
Visual Impairment
Peripheral Neuropathy
Myelopathy
Radiculopathy
Depression
Psychotic Disorders
Cardiac
Endocrine
Musculoskeletal
ADR
Bipolar Dis
Stroke
Head Injury
Pulmonary
SIB Seizures
Nerve Comp
Spasticity
Anxiety
Sensory
Hearing Impairment
Vestibular
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DomainsofCogni*onandDemen*a
� Memory� Shortandlongterm
� Attention� Executivefunction� Language� Visuospacial� Praxis
� Progressivedeclineincognitionandfunctionwithevolutionofsymptomsovertime
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Classifica*onofDemen*asPotentiallyReversible Irreversible
� DrugToxicity� MetabolicDisturbance� NormalPressureHydrocephalus� MassLesion(Tumor,ChronicSubdural)� InfectiousProcess(Meningitis,Syphilis)� Collagen-VascularDisease(SLE,Sarcoid)� EndocrineDisorder(Thyroid,Parathyroid)
� NutritionalDisease(B12,thiamine,folate)� Mooddysfunction� Sleepdysfunction
� Alzheimer’sDisease� FrontotemporalDementia� Parkinson’sDementia� LewybodyDisease� PrimaryProgressiveAphasia� Huntington'sChorea� KufsDisease� Multi-infarctDementia� Jacob-CruzefeldtDisease� Headinjuries� HIVDementia� MultipleSclerosis
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Alzheimer’sDiseaseinDownSyndrome� WomenwithDown’ssyndromearemoreatriskof
developingAlzheimer’sdiseasethanmeninthe40to65agegroup
� PeoplewithDown’ssyndromewhodevelopAlzheimer’sdiseaselive,onaverage,9-10yearsfromfirstsymptoms
� Infrequentlyrapiddeclinecanoccur� Lateon-setseizures� Fromdiagnosistodeathisonaverage8.2years
PercentageofpeoplewithDownsyndromewhodevelopdementia
atdifferentages:
Agepercentagewithclinicalsignsof
dementia
30’s 2%40’s 10-15%
50’s 33%60’s 50-70%Source:Neil,M.(2007).Alzheimer'sdementia:Whatyouneedtoknow,whatyouneedtodo.Understandingintellectualdisabilityandhealth.Accessedfromhttp://www.intellectualdisability.info/mental-health/alzheimers-dementia-what-you-need-to-know-what-you-need-to-do.
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PercentpersonswithDownsyndromeshowingevidenceofneurofibrillarytangles(NFT)andsenileplaques(SP)atautopsy
Source: Mann (1993) – [based on 39 published studies n=434]
PlaqueofAmyloidBeta-Protein.
Visibleasablackglobularmasswhenstained.Theplaqueissurroundedbyabnormalneuritesanddegenerating
neurons
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NaturalhistoryofAlzheimer’sDisease
1 2 3 4 5 6 7 8 9
0
5
10
15
20
25
30
Time (years)
Symptoms
Diagnosis
Loss of functional independence
Behavioural problems
Nursing home placement
Death Min
i-Men
tal S
tate
Exa
min
atio
n (M
MSE
) Early diagnosis Mild-to-moderate Severe
Feldman and Gracon. The Natural History of Alzheimer’s Disease. London: Martin Dunitz, 1996
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Updatedmodelintegra/ngAlzheimer'sdiseaseimmunohistologyandbiomarkersThethresholdforbiomarkerdetec/onofpathophysiologicalchangesisdenotedbytheblackhorizontallineJacketal.(2013).TheLancetNeurology,12,207-216.
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AdultswithDownSyndrome:SpecialtyClinicPerspec*ves
Chicoine, B., McGuire, D., Rubin, S. Diagnosed Disorders for 148 Adults Who Presented with a Decline in Function
Disorder Frequency Percent of Diagnosed Disorders (%) Mood 76 31 Anxiety 31 13 Obsessive-Compulsive 29 12 Behavior 23 9 Hypothyroid 22 9 Adjustment 12 5 Alzheimer's 11 4 B12 Deficiency 7 3 Menopause 7 3 Attention Deficit / Hyperactive 6 2 Gastrointestinal or Urinary 6 2 Sensory Impairment 6 2 Psychotic 4 2 Other Medical Conditions* 4 2 Cardiac Conditions 3 1
TOTAL 247 100
Dementia, Aging and Intellectual Disabilities: A Handbook ed. by Janicki and Dalton (Taylor and Francis, 1999)
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Challengestodiagnosisandcare� IndividualswithI/DDmaynotbeabletoreportsignsandsymptoms
� Subtlechangesmaynotbeobserved� CommonlyuseddementiaassessmenttoolsarenotrelevantforpeoplewithI/DD
� Difficultyofmeasuringchangefrompreviousleveloffunctioning
� ConditionsassociatedwithI/DDmaybemistakenforsymptomsofdementia
� Diagnosticovershadowing� Agingparentsandsiblings� Lackofresearch,education,andtraining
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Early detection/screening ‘NTG-EarlyDetectionScreenforDementia’(NTG-EDSD)� Usablebysupportstaffandcaregiverstonotepresenceofkeybehaviorsassociatedwithdementia� Picksuponhealthstatus,ADLs,behaviorandfunction,memory,self-reportedproblems� AvailableinmultiplelanguagesUse:toprovideinformationtophysicianordiagnosticianonfunctionandtobegintheconversationleadingtopossibleassessment/diagnosis
http://aadmd.org/ntg/screening
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MoranJA,etal"ThenationaltaskgrouponintellectualdisabilitiesanddementiapracticesconsensusrecommendationsfortheevaluationandmanagementofdementiainadultsWithintellectualdisabilities"MayoClinProc2013;88(8):831-840.http://www.medpagetoday.com/TheGuptaGuide/Neurology/41094
� Takingthoroughhistory,withparticularattentionto"redflags"thatpotentiallyindicateprematuredementiasuchashistoryofcerebrovasculardiseaseorheadinjury,sleepdisorders,orvitaminB12deficiency
� Documentingahistoricalbaselineoffunctionfromfamilymembersofcaregivers
� Comparingcurrentfunctionallevelwithbaseline� Notingdysfunctionsthatarecommonwithageandalsowithpossibleemerging
dementia� Reviewingmedicationsandnotingthosethatcouldimpaircognition� Obtainingfamilyhistory,withparticularattentiontoahistoryofdementiain
first-degreerelative� Notingotherdestabilizinginfluencesinpatient'slifesuchasleavingfamily,
deathofalovedone,orconstantturnoverofcaregivers,whichcouldtriggermooddisorders
� Reviewingthelevelofpatientsafetygleanedfromsocialhistory,livingenvironment,andoutsidesupport
� Continually"cross-referencingtheinformationwiththecriteriaforadementiadiagnosis"
TheNTG’srecommendednine-stepapproachforassessinghealthandfunc*on.
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Demen*aandGoalsofCare
� MaintainingQOL� Prolonginglife� Preventfunctionaldecline
� Slowprogression� Decreasepsychiatric/behavioralproblems
� Fallreductionprogram� Reducehospitalization
� Watchforsignsofabuse,neglect,andcaregiverburnout
� CholinesteraseInhibitionandMemantine
� Pharmacologicandbehavioralinterventions
� PalliativeCare� EndofLifeCare
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BehavioralandPsychologicalSymptomsofDemen*a(BPSD)
� 90%ofpeoplewithdementiawillhaveatleastonesymptom
� Depression—40%� Delusions—63%� Hallucinations—4-41%� Aggression—31-42%� Apathy
� Associatedwithworseprognosis
� Morerapidcognitivedecline� Increasedcaregiverburden� Leadstoearlieradmissiontoinstitutionalcare
� IncreasedhealthcarecostFinkelSI,BurnsA,CohenG(2000)OverviewofBPSD,aclinicalandresearchupdate.IntPsychogeriatrics12(suppl1):13–18
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CommonTriggers� Physical
� Acuteillness/infection,medications,pain,poorvision,hearing,poorsleep
� Cognitive� Inabilitytounderstand,expressoneself,lackofinsight,misinterpretationofenvironment,difficulttoproblemsolve
� Emotional� Fear,anxiety,depression,frustration,apathy,boredom
� Environmental§ Changesincaregiver,confrontationalapproach,tasksthatexceedabilities,changeinroutine,over/understimulation,lackofvisualcues
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NonpharmacologicalApproaches
� Familiarenvironment—avoidfrequentmoves
� Softlighting� Calmcolors� Placestowalk� Accesstooutdoorspaces� Home-likeenvironment� Lowstimuli—minimizebackgroundnoise
� Timeoutspace
� IndividualizedCarePlanning
� Carefulanalysisofcareinteractions
� Meaningfulactivity� MusicTherapy� Exercise� Snoezelen(multisensorystimulationprogram)
� Aromatherapy� Yoga
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Donot:� Argue–itwillmakethesituationworse� Tellthepersonwhattheycan’tdo–tellthemwhattheycando� Talkdowntothepersonasiftheyareayoungchild� Askalotofquestions� Talkaboutapersonwithdementiaasiftheyarenotpresent,evenifyouthinkthattheycannotunderstandyou
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� Clearindication,potentialbenefitsandrisks� FDABlackBoxWarningforAntipsychoticsinusageinpatientswithdementia.Studieshaveshownanincreasedrateofmortalitysecondarytovascularcomplicationsincludingstrokesandcardiacevents1
� Identifytargetsymptoms� Expectedtimetoresponse� RisksassociatedwithandwithoutRx� Appropriatedoserange� Monitoringforsideeffectsandresponse� Whentoconsiderdosereduction,discontinuation.
FDA Public Health Advisory: Deaths with antipsychotics in elderly patients with behavioral disturbances. Accessed January 16, 2006, at www.fda.gov/cder/drug/advisory/antipsychotics.htm
Medications Specifically for Behavioral Psychological
and Symptoms in Dementia (BPSD)
1
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Target Symptoms Medication
Delusions Hallucination Aggression “Agitation”
Atypical Antipsychotics: • risperidone • olanzapine • quetiapine
Sadness Irritability Anxiety Insomnia
Antidepressants • citalopram • sertraline • venlafaxine • mirtazapine • trazodone
Target symptoms Medication
Mood swings Euphoria Impulsivity
Mood stabilizers: • valproic acid • carbamazepine
Agitation Apathy Irritability
Cholinesterase Inhibitors. Memantine
Anxiety (short term use in predictable situations)
Anxiolytics: • lorazepam • oxazepam
Sink KM et al. Pharmacological treatment of neuropsychiatric symptoms of dementia: a review of the evidence. JAMA. 2005;293:596-608
Medica*onsSpecificallyforAlzheimer’sSymptoms:
BehavioralPsychologicalandSymptomsinDemen*a(BPSD)
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An*psycho*cs� Classofmedsusedtotreatpsychosisandothermentaloremotionalconditions;delusions,hallucinations,agitation,paranoia
� Blockreleaseofdopamineinthebrain� Typical(conventional)oratypical� Typicalarenotselectiveandalsoblockreceptorsinotherareasofthebrainwhichmayproduceunwantedsideeffects
� Atypicalcausefeweracuteorchronicextra-pyramidalsymptoms(EPS)
� Atypicalantipsychoticsresultinimprovementinmoodandcognitioncomparedtotypicalantipsychotics
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Sideeffectsofan*psycho*cs� Parkinsonism� Dystonia-abnormalfaceandbody
movements� Akathisia(restlessness)� Tardivedyskinesia(longterm)� Exacerbatedbydrugholidayregime� Morecommoninfemales� Worsenedinresponsetoreducingdrug� Irreversible(denervationsupersensitivity)
Manyundesirablesideeffects(e.g.,constipation,metabolicsyndrome,lactation,andretrogradeejaculation)
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Cogni*veEnhancers� CholinesteraseInhibitors;Aricept,Exelon,Razadyne
� Heller,J.AmericanJournalofMedicalGenetics,Oct.15,2004;vol130:pp324-326� LottITetal.ArchNeurol.2002;59:1133-1136� KishnaniPSetal.(1999)Lancet353:1064
� NMDA(N-methyl-D-aspartate)receptorantagonist;Namenda� Hanney,Prasher,TheLancet,Volume379,Issue9815,Pages528-536,11February2012
� HerbalSupplements/Vitamins� GinkgoBiloba� VitESano,Metal.(1997)Acontrolledtrialofselegiline,alpha-tocopherol,orbothastreatment
forAlzheimer‘sdisease.NEJM336:1216-22
� Research� Anticholinergics� Nicotine� Homocysteine� HuperzineA� NSAIDS� BetaAmyloidandTauproteinantagonists� Vaccinationtrials
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ProgressionofDisease;An*cipatoryGuidance
� CognitiveSkillswilldecline� Supportneedswillincrease� Increaserisksoffalls,injuries� Swallowingdysfunction,clots,pneumonia,bladderinfections
� Seizures� Watchforsignsofabuseandneglect� Watchforsignsofcaregiverburnout� Endoflifedecisions
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Pallia*veandEndofLifeCare� TherealizationthatAlzheimer’sdiseaseprogresseswithincreasingrisksofhealthcomplicationsimpactingonesQOL/ADL’s
� Respectingoneswishesforlevelofcareandqualityoflife� Defining,anticipating,andpreparingforendoflife