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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 Disability DM-ID Mental Retardation (MR) ↓ MR/ID ↓ Intellectual Disability (ID) • http://www.dmid.org/ DSM Changes DSM-4: Mental Retardation • Sub average intellectual functioning : an IQ of 70 or below on an IQ test DSM-5: Intellectual Disabilities: (Intellectual Developmental Disorder) • Deficits in Intellectual Functions • Deficits in adaptive • Concurrent deficits or impairments in adaptive functioning in at least 2 areas • Mild, moderate, severe, profound functioning • Onset of intellectual and adaptive deficits during developmental period • Mild, moderate, severe, profound DSM Changes DSM-4 • MR, Severity Unspecified: DSM-5 • Global Developmental Delay • strong presumptions of MR • < 5 yrs old • untestable by standard tests • Can’t determine level of impairment • Reassess Later • Unspecified ID • > 5 yrs old • Can’t determine degree of ID • Use Rarely • Reassessment Later Adaptive Functioning Determined by 3 Domains: Conceptual, Social and Practical Severity Level Conceptual Domain Social Domain Practical Domain Mild Concrete Immature Difficulty with social cues Poor social judgment Gullible Age appropriate with personal cares Need support Complex daily skills: grocery, money, medical/legal decisions Elementary academic skill development Difficulty with social cues and decision making, Personal care possible with A LOT of teaching DSM 4: IQ: 50-55 to 70 Mental Age: 9-12yrs Moderate DSM 4: IQ: 35-40 to 50-55 Mental Age: 6-9yrs Severe DSM 4: IQ: 20-25 to 35-40 Mental Age: 3-6yrs Profound DSM 4: IQ: 20-25 to 35-40 Mental Age: 3-6yrs Maladaptive behavior in a “significant minority” Little understanding of written language or concepts Limited spoken language. Single words. Support for all activities May be able to sort/match objects May understand simple instructions or gestures Dependent on others 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% Epidemiology Shoumitro, 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 ID Matson, 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 Autism Spectrum Disorder • 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 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 • Level 2 • Level 3 Requiring Support Requiring Substantial Support 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 Angelman Prader-Willi Cri-du-chat Rubinstein-Taybi Down Smith Magenis Fetal Alcohol Tuberous Sclerosis Fragile X Complex Velocardiofacial 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 Effects Kran, 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 Aggression Shoumitro, 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 Aggression Expert 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 Treatment Expert 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 Antipsychotics Deb, 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 Year n Target Behavior Type of Study Rx Gageano 2005 39 (38) Various Aggression SIB RCT Risperidone (add on) 1.8 mg La Malfa 2001 18 Aggression Prospective Uncontrolled Risperidone 2mg +/- 1 mg Lott 1996 33 Aggression SIB Property Destruction Prospective Uncontrolled Risperidone (add on) 5.1 mg La Malfa 2003 15 Aggression SIB Prospective Uncontrolled Quetiapine 300-1200mg Year n Target Behavior Type of Study Rx Thalyasingam (2004) 24 Aggression Retrospective (psychosis) Uncontrolled Clozapine 485 mg Boachie & McGinnity 1997 17 Aggression Retrospective (psychosis) Uncontrolled Clozapine 640 mg in ♀ 357 mg in ♂ Janowky 2003 20 Aggression Retrospective SIB Uncontrolled Olanzapine 9.1 mg Gualtieri 1990 12 SIB Prospective Uncontrolled Fluphenazine 1-15mg Malt 1995 34 Aggression SIB Prospective Uncontrolled *Zuclophenthixol vs Haldol Antipsychotics Tyrer, 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 Stabilizers Deb, 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 Year N Behavior Type of Study RX Craft 1987 22 Aggression RCT Lithium (add on) 0.7 – 1.2 Tyrer 1993 52 Aggression SIB RCT Lithium (add on) 0.5 – 0.8 Langee 1990 66 Aggression, SIB 41% sz Retrospective Uncontrolled Lithium (add on) 0.7 – 1.2 Verhoeven 2001 28 Aggression, SIB 28% sz Prospective Uncontrolled Valproate (add on) 1345 mg Ruedrich 1999 28 Aggression, SIB 43 % sz Retrospective Uncontrolled Valproate (add on) 920 mg Janowsky 2003 22 Aggression, SIB 41% sz Retrospective Uncontrolled Topiramate (add on) 202 mg Reid 1981 10 Overactivity 50% sz Double blind, controlled, crossover Carbamazepine (add on) Antidepressants Deb, 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) Year n Behavior Type of Study Rx Lewis 1995 10 Stereotype SIB Compulsive RCT Bodfish 1993 16 Aggression SIB compulsive Prospective Cohort Uncontrolled Fluoxetine 20-80 mg Troisi 1995 19 Aggression 100% sz Prospective Longitudinal Uncontrolled Fluoxetine 20 mg Cook 1992 10 Preserverative SIB Prospective Open Uncontrolled Fluoxetine 20-80 mg Markowitz 1992 20 Aggression SIB OCD behaviors Prospective Open Uncontrolled Clomipramine 225 mg Fluoxetine (add on) 20-80 mg Year n Behavior Type of Study Rx La Malfa 2001 60 Aggression Prospective Case series Uncontrolled Fluvoxamine 250 mg La Malfa 1997 14 Aggression SIB Prospective Case series Uncontrolled Fluvoxamine 250 mg Janowsky 2005 14 Aggression SIB Retrospective Case Series Uncontrolled Paroxetine (add on) 10-40 mg Davanzo 1998 15 SIB Prospective Case Series Uncontrolled Paroxetine (add on) 35 mg Branford 1998 33 Perseveration Aggression SIB Retrospective Case Series Uncontrolled Paroxetine (add on) 20-40 mg 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!!
