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Challenging Behavior in Adults with Intellectual Disability. October 2013 Jodi Tate, M.D. Overview. Definitions Etiology, Epidemiology Challenging Behavior Etiology of Challenging Behavior Assessment of Challenging Behavior Treatment of Challenging Behavior. ID: Intellectual Disability
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Challenging Behavior in Adults with Intellectual Disability October 2013 Jodi Tate, M.D.
Overview • Definitions • Etiology, Epidemiology • Challenging Behavior • Etiology of Challenging Behavior • Assessment of Challenging Behavior • Treatment of Challenging Behavior
ID: Intellectual Disability • PWID: Persons with ID • ASD: Autism Spectrum Disorders • Dual Diagnosis: Axis I + ID • CB: Challenging Behavior
Diagnostic Manual-Intellectual DisabilityDM-ID Mental Retardation (MR) ↓ MR/ID ↓ Intellectual Disability (ID) • http://www.dmid.org/
DSM Changes DSM-4: Mental Retardation DSM-5: Intellectual Disabilities: (Intellectual Developmental Disorder) Deficits in Intellectual Functions Deficits in adaptive functioning Onset of intellectual and adaptive deficits during developmental period Mild, moderate, severe, profound • Sub average intellectual functioning : an IQ of 70 or below on an IQ test • Concurrent deficits or impairments in adaptive functioning in at least 2 areas • Mild, moderate, severe, profound
DSM Changes DSM-4 DSM-5 Global Developmental Delay < 5 yrs old Can’t determine level of impairment Reassess Later Unspecified ID > 5 yrs old Can’t determine degree of ID Use Rarely Reassessment Later • MR, Severity Unspecified: • strong presumptions of MR • untestable by standard tests
Adaptive Functioning Determined by 3 Domains: Conceptual, Social and Practical
Etiology of ID • Highly Heterogeneous • 30% of ID caused by: • Down Syndrome, Fragile X, Fetal Alcohol Syndrome • Prenatal: 4-28% • Genetic, congenital malformations, exposure • Perinatal: 2-10% • Infections, delivery problems • Postnatal: 3-12% • Infections, toxins, psychosocial • Unknown: 30-50%
EpidemiologyShoumitro, World Psychiatry, 2009 • 1-3% of population has an ID • 1.5 ♂:1.0 ♀ • 30% Dual Diagnosis (mental illness + ID) • Wide discrepancy reported • Many limitations with studies • 40% Autism Spectrum Disorder (ASD) • 50-70% of individuals with ASD have an ID
Overview • Definitions • Etiology, Epidemiology • Challenging Behavior • Etiology of Challenging Behavior • Assessment of Challenging Behavior • Treatment of Challenging Behavior
Challenging Behavior • Challenging behavior (CB) • Aggression • Property Destruction • Self injurious behavior (SIB) • ID (Oliver-Africano, 2009) • 25 – 50%
Etiology of Challenging Behavior • Psychiatric Illness • I’m depressed. I’m manic. I’m anxious. I’m psychotic. • Behavioral Phenotype • I have a genetic syndrome that predisposes me to become agitated and angry. • Medical Illness/ Side effects/Pain • I am constipated. I have an ear infection. I have a UTI. • Function of Behavior • I want you to spend time with me = Attention • I don’t want to work = Escape • I want to a van ride = Access to tangibles • Internally driven = Sensory
Diagnostic Overshadowing • Falsely attributing symptoms to ID • Health care providers overlook psychiatric or medical co-morbidity • “They are MR that is why they are acting that way”
Etiology of Challenging Behavior • Psychiatric Illness • I’m depressed. I’m manic. I’m anxious. I’m psychotic. • Behavioral Phenotype • I have a genetic syndrome that predisposes me to become agitated and angry. • Medical Illness/ Side effects/Pain • I am constipated. I have an ear infection. I have a UTI. • Function of Behavior • I want you to spend time with me = Attention • I don’t want to work = Escape • I want to a van ride = Access to tangibles • Internally driven = Sensory
Psychiatric Illness What is the relationship between aggression and mental illness?
Psychiatric Illness • Complex relationship • Literature isn’t much help • Use terms interchangeably • Discuss separately but don’t address their relationship • Lots of opinions • Behavioral Equivalent (atypical presentation of mental illness) • Strong Association between depression and challenging behavior (Moss, 2000) • Lack specificity (Charlot, 2005) • Challenging Behavior is not a psychiatric disorder and inclusion results in high rates of psychiatric morbidity (Whitaker, 2006)
Relationship between ASD and IDMatson, Research in Developmental Disabilities, 2009 • ASD + ID poor prognosis compared to ID – ASD • ASD + ID = Strongest predictor of hospital admission, psychotropic use, Challenging behavior • ASD + ID (McCarthy, 2010) • High rate of challenging behavior (up to 88%) • Transition to adulthood = DIFFICULT • Leaving high school results in decline in services • Slowing of improvement of symptoms after high school
DSM-4: Pervasive Developmental Disorders • Autistic Disorder • Social interaction • Restricted Repetitive and Stereotyped behavior, interests, activities • Communication • Asperger’s Disorder • Social interaction • Restricted Repetitive and Stereotyped behavior, interests, activities • No delay in language or cognitive development (can have odd use of language) • PDD, NOS • Rett’s Disorder • Loss of language, social, motor skills: 6-18 mo • Childhood Disintegration Disorder • Regression after normal development: 2-10 yrs Autism Spectrum Disorder
DSM-5: Autism Spectrum Disorder • Deficits in • Social Communication and Social Interaction • Restricted Repetitive Patterns of Behavior, Interests, Activites • Present in early development • Cause impairment • Not better explained by ID • Specify • With or without ID • With or without language impairment • Associated with known medical or genetic condition or environmental factor (Rett’s) • With Catatonia • Severity Level • Level 1 Requiring Support • Level 2 Requiring Substantial Support • Level 3 Requiring Very Substantial Support
Etiology of Challenging Behavior • Psychiatric Illness • I’m depressed. I’m manic. I’m anxious. I’m psychotic. • Behavioral Phenotype • I have a genetic syndrome that predisposes me to become agitated and angry. • Medical Illness/ Side effects/Pain • I am constipated. I have an ear infection. I have a UTI. • Function of Behavior • I want you to spend time with me = Attention • I don’t want to work = Escape • I want to a van ride = Access to tangibles • Internally driven = Sensory
Behavioral Phenotype DM-ID • PKU • Prader-Willi • Rubinstein-Taybi • Smith Magenis • Tuberous Sclerosis Complex • Velocardiofacial • Angelman • Cri-du-chat • Down • Fetal Alcohol • Fragile X • Williams
Etiology of Challenging Behavior • Psychiatric Illness • I’m depressed. I’m manic. I’m anxious. I’m psychotic. • Behavioral Phenotype • I have a genetic syndrome that predisposes me to become agitated and angry. • Medical Illness/ Side effects/Pain • I am constipated. I have an ear infection. I have a UTI. • Function of Behavior • I want you to spend time with me = Attention • I don’t want to work = Escape • I want to a van ride = Access to tangibles • Internally driven = Sensory
Medical Illness/Side EffectsKran, 2006; Lidnsey, 2002; Fletcher, 2007; Sheepers, 2005 • Numerous studies indicating etiology of aggression • Undiagnosed medical condition and/or side effects from meds • ID and Mental Illness (dual diagnosis) • One of the most underserved populations • Lack of recognition of common medical conditions • Lack of preventative health care • Increased Rates of Mortality and Morbidity • Seizures, GI, DM, Poor dentition, Osteoporosis, • Aspiration Pneumonia, Hearing and Visual Impairments Lack of adequate education/training of health care providers is a major contributor
Medical Illness/Side Effects/Pain • Kastner, 2001 • n = 209 with problem behavior • 12% undiagnosed medical conditions • 7% unrecognized side effects • Van Kyde, 1997 • N = 25 with SIB • 28% undiagnosed medical conditions • Savage, 2007 • 42 yo ♂ SP, Severe ID, aggression • Constipation and urinary retention (psych meds?) • Metamucil, toilet training • No evidence psychosis, d/c all meds
Etiology of Challenging Behavior • Psychiatric Illness • I’m depressed. I’m manic. I’m anxious. I’m psychotic. • Behavioral Phenotype • I have a genetic syndrome that predisposes me to become agitated and angry. • Medical Illness/ Side effects/Pain • I am constipated. I have an ear infection. I have a UTI. • Function of Behavior • I want you to spend time with me = Attention • I don’t want to work = Escape • I want to a van ride = Access to tangibles • Internally driven = Sensory
Function of Behavior • Applied Behavioral Analysis: Functional Analysis/Assessment • Center for Disability and Development (CDD) • Todd Kopelman, PhD = Dept of Psych • Figure out “function” of behavior • 4 Functions: • Attention= I want you to spend time with me • Escape = I don’t want to work • Access to tangible = I want to a van ride • Sensory = internally driven • Treatment Based on Function • Behavioral Plan • Functional Communication Training
Overview • Definitions • Etiology, Epidemiology • Challenging Behavior • Etiology of Challenging Behavior • Assessment of Challenging Behavior • Treatment of Challenging Behavior
Assessment of AggressionShoumitro, World Psychiatry, 2009 • Primary aim of management is NOT to treat behavior but to identify and address underlying CAUSE • Unfortunately not always possible • Thorough Assessment is prerequisite in managing aggression • Formulation should be made even in absence of medical or psychiatric diagnosis
Assessment of AggressionExpert Consensus Guidelines, 2004 • Interview with family/caregivers • Chart Review • Direct observation of behavior ideal (ABC) • Antecedents of behavior • Problem Behavior • Consequences (reactions and outcomes) • Medical History and Physical Exam • Joni Bosch, ARNP • Center for Disability and Development (CDD) • Medication and Side effect evaluation • Functional Behavior Assessment/Analysis (CDD) • Assessment that tries to identify the functions responsible for behavior • Attention, Access to preferred activities, Escape, Sensory
Overview • Definitions • Etiology, Epidemiology • Challenging Behavior • Etiology of Challenging Behavior • Assessment of Challenging Behavior • Treatment of Challenging Behavior
Step 1: Determine Reason for Behavior • Psychiatric Illness • I’m depressed. I am manic. I am anxious. I am hearing voices. • Behavioral Phenotype • I have a genetic syndrome that predisposes me to become agitated and angry. • Medical Illness/ Side effects/Pain • I am constipated. I have an ear infection. I have a UTI. • Function of Behavior • I want you to spend time with me = Attention • I don’t want to work = Escape • I want to a van ride = Access to tangibles • Internally driven = sensory or automatic
Pharmacological TreatmentExpert Consensus Guidelines, 2004 • Treat underlying cause but when unable….. • Symptomatic Treatments.. No established pharmacotherapy for aggression • Atypicals (risperidone, olanzapine, consider seroquel) • Mood stabilizers (divalproex, tegretol consider Li) • Consider SSRI • 2nd line: Naltrexone, typical, beta-blocker, buspar • Based on clinical opinion and very few studies, mostly case reports
AntipsychoticsDeb, Journal of Intellectual Disbility Research, 2007 • Review of Literature • 1990-2005 • >18 • IQ <70 • Behavior Problem (aggression, SIB) • n >/= 10 • Before & after outcome (any measure) • 9 studies • 1 RCT - Risperidone
AntipsychoticsTyrer, Lancet, 2008 • RCT • Haloperidol (2.94mg) • Risperidone (1.78mg) • Placebo • n = 86 • Challenging behavior and aggression • Baseline, 4, 12, 26 weeks • MOAS (Modified Overt Aggression Scale)
“Antipsychotic drugs should no longer be regarded as an acceptable routine treatment for aggression….” Tyrer, Lancet, 2008
Mood StabilizersDeb, Journal of Intellectual Disability Research, 2008 • Review of Literature • <1990-2006 • >18 • IQ <70 • Behavior Problem (aggression, SIB, hyperactivity, stereotypical movements) • N >/= 10 • Before & after outcome (any measure) • 7 studies (Lithium, Valproate Acid, Topamax, Carbamazepine) • 2 RCT - Lithium • 1 negative - Carbamazepine
AntidepressantsDeb, Journal of Intellectual Disability Research, 2007 • Review of Literature • <1990-2005 • >18 • IQ <70 • Behavior Problem (aggression, SIB, hyperactivity, stereotypical movements) • N >/= 10 • Before & after outcome (any measure) • 10 studies (Clomipramine, Fluoxetine, Paroxetine, Fluvoxamine) • 1 RCT - Clomipramine • 5 negative – Fluoxetine (2), Paroxetine (3)
Monitoring Treatment Effects Expert Consensus Guidelines, 2004 • Evaluate Treatment Effects • Identify specific target behavior/symptoms • Collect baseline data before start medications • Track specific behaviors/symptoms • Frequency count, time sample, interval spoilage, rating scales (aberrant behavior checklist) • Summarize this data by time periods and/or by drug and dose condition • Collect outcome data
Summary • Important to determine the etiology of challenging behavior in individuals with ID • Psychiatric Illness • Behavioral Phenotype • Medical Illness/Side effects/Pain • Function: Attention, Escape, Access, Sensory • First step in treatment is to determine etiology!!