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1 INTELLECTUAL AND DEVELOPMENTAL DISABILITES 2 OBJECTIVES Know and understand: • The definition of intellectual disability (ID) and its prevalence among older adults • How to recognize and manage psychiatric, mental, and behavioral disorders in older adults with ID • Ways to overcome barriers to diagnosis and treatment • Common comorbidities found in individuals who have a developmental disability (DD), with or without ID 3 TO P I C S C O V E R E D • Nomenclature • Prevalence • Diagnostic and Treatment Issues • Psychiatric and Mental Disorders in Aging Adults with ID • Medical Disorders • Social Conditions • Developmental Disabilities and Comorbidity 4 NOMENCLATURE • Definition of ID: deficits in intellectual abilities that impact functioning in 3 areas 1. conceptual skills 2. social and interpersonal skills 3. Self-management skills Not everyone with a DD has ID • This slide set focuses on individuals with ID who may or may not have a comorbidity such as cerebral palsy, epilepsy, or autism spectrum disorder • The term “mental retardation” has been replaced with “intellectual disability” in the DSM V 5 PREVALENCE OF ID • Life expectancy for people with ID has increased substantially 1930: Average age of death 19 1990s: life expectancy increased to 66y • Prevalence currently 1%–2% in the US For people 60 yr, this number expected to double by 2030 6 ID AND MENTAL ILLNESS • Adults with ID have similar risk factors for mental illnesses as their peers without disability but may have additional risks depending on the cause of their mental disability • Older adults who were raised in institutions or did not benefit from modern medical care are also at greater risk • The prevalence of psychiatric disorders among adults with ID is about 5 times that of age-matched controls (10%–40%) • Among the most common disorders is dementia BARRIERS TO DIAGNOSIS AND TREATMENT (1 of 2) • Limited self-awareness Estimate the degree to which the patient is aware of his or her problem, condition, or feelings Avoid complex questions and high-level vocabulary • Limited communication ability Receptive and expressive abilities can be comparable or quite different Differences in these abilities is a characteristic feature of some conditions Consult collateral sources of information, such as family or caregivers who can provide histories and other data 7 BARRIERS TO DIAGNOSIS AND TREATMENT (2 of 2) • Diagnostic overshadowing The idea that the patient’s symptoms and behavior are attributed to their intellectual disability, leaving comorbid conditions undiagnosed and untreated Diagnostic overshadowing is a barrier to critical thinking, and clinicians should guard against it when presented with a difficult situation 8 9 PSYCHIATRIC AND MENTAL DISORDERS IN AGING ADULTS WITH ID • The occurrence and severity of psychiatric disturbances can vary by age and comorbid conditions • Some symptoms may improve as the patient ages or develops comorbid problems • Some behaviors or conditions can worsen with age through various processes PROBLEM BEHAVIOR CAN SIGNAL PHYSICAL ILLNESS IN ADULTS WITH ID 10 • In people who are lower-functioning or have an expressive communication disorder, a new behavioral concern can be a sentinel sign of a physical disorder • As a general rule, before determining that a new problem behavior should be treated with a psychotropic medication or intervention, physical causes should be excluded • New-onset self-injurious behavior can be a particularly important clue to occult illness 11 DEMENTIA AND ID • Individuals with ID have a higher overall prevalence of dementia than is found in age-matched controls in the general population • All causes of dementia are possible, but some are more likely than others Down syndrome “Pugilistic dementia” associated with repeated self-injuring blows to the head from coup/contracoup effects INCIDENCE OF DEMENTIA IN ADULTS WITH DOWN SYNDROME • There is an association and a significantly increased risk of dementia and Down syndrome • Nearly 100% of adults with Down syndrome have developed the characteristic histologic neuropathology of dementia by age 40; however, it is not typical to develop overt dementia at this young an age • It is common for at least 50% of adults with Down syndrome who are ≥60 years old to have clinical evidence of dementia 12 LIFE EXPECTANCY OF ADULTS WITH DEMENTIA AND DOWN SYNDROME Median age of death, yr 60 49 50 40 30 25 20 10 0 1983 1997 13 DIAGNOSIS AND TREATMENT OF DEMENTIA IN PEOPLE WITH ID • Dementia is diagnosed according to the same criteria as in the general population: Establish cognitive and adaptive deterioration Demonstrate deficits on exam (preferably with longitudinal follow-up showing progression of deficits) Exclude other possible causes of deterioration and other mental disorders • Body of evidence is increasing for modest palliative efficacy in this population of cholinesterase inhibitors (donepezil, rivastigmine, galantamine) and the glutamate receptor antagonist (memantine) 14 15 ADAPTIVE BEHAVIORAL DIFFICULTIES • Types of adaptive behaviors: Conceptual (eg, language, reading, writing) Social (eg, rules, sense of responsibility) Practical (eg, job skills, eating, dressing) • In general, the greater the severity of ID, the lower the level of adaptive abilities, but these abilities can be improved over time with behavioral supports • Like any group, aging adults with ID can lose or become less adept with some adaptive behavior skills 16 MALADAPTIVE BEHAVIORS • Examples: withdrawal, self-injury, stereotypy • Severe or frequent in up to 50%–60% of adults with ID Can persist for years • The proportion decreases with age, for various reasons Exception 1: In Down syndrome the proportion is higher and the incidence of behavioral problems increases with the degree of ID Exception 2: Aggression is similarly frequent in all age groups; presentation is extremely variable DIAGNOSIS OF MENTAL DISORDERS IN OLDER ADULTS WITH ID • Follow the same principles of history-taking and examination that apply for the general population, with the caveats discussed on the previous 2 slides • Mental disorders often present as behavioral changes The reports of family or other caregivers are extremely important Consider a change in staff, residential or vocational setting, or family health as a precipitating factor for behavioral changes 17 18 TREATMENT OF MENTAL DISORDERS IN OLDER ADULTS WITH ID • The appropriate treatment or response might be instructional or behavioral Preferred behavior programs reward desirable behavior using positive reinforcement techniques • Pharmacologic intervention may be necessary for the safety of the patient or those nearby, in particular for physical aggression Very few medications are approved for the most common and challenging behaviors, and prescribing medications off-label is common PRINCIPLES OF MEDICATION MANAGEMENT • Treating major mental illness in older adults with ID is similar to treating the general population • Change only one medication at a time • Start new medications at a low dosage and monitor the results (“start low, go slow”) • If possible, taper and ultimately D/C all medications • Avoid antipsychotic medications 19 20 MEDICAL DISORDERS • Adults with ID have more medical problems than agematched individuals About 5 medical conditions per person People with severe ID have even more About 2/3 of community-dwelling people with ID have chronic conditions or major physical disability, 50% of which go undetected • Visual or hearing impairments are particularly common in people with ID They increase with age and affect about 25% 21 LIFE EXPECTANCY • Life expectancy for adults with ID is ~65 yr Decreases with increasing severity of ID Decreases with comorbidities such as inability to ambulate, lack of feeding skills, and incontinence • The most common causes of death are CVD, respiratory disorders, cancer, and dementia (particularly in Down syndrome) 22 SOCIAL CONDITIONS • At least 80% of adults with ID are cared for at home by aging family members • About 40% of eligible individuals are not served by the formal service system Can lead to crisis when the family can no longer provide care or manage a behavioral problem • About half of adults with ID and a behavior problem eventually need a different living arrangement In a typical system, more than half of families have not made plans for future care DEVELOPMENTAL DISABILITIES AND COMORBIDITY (1 of 5) Change with developmental disabilities Management strategies Intellectual disability Two thirds of patients with DD suffer from ID, many in the mild-tomoderate range Evaluation and referral to specialized services to maximize intellectual potential Growth retardation Usually found in patients with moderate to severe disabilities; it may present as short stature, inability to gain weight, lack of sexual development, or failure to thrive Medical evaluation for treatable causes Sensory impairment Nearly 90% of patients have impairments in hearing, vision, and speech. Strabismus is common, as is dysarthric speech. Regular evaluation of hearing, vision, and speech; correction of deficits System/condition 23 DEVELOPMENTAL DISABILITIES AND COMORBIDITY (2 of 5) System/condition Change with developmental disabilities Management strategies Dental/oral conditions Poor dentition and oral health are very common Oral hygiene and tooth brushing; regular dental visits Thyroid problems Thyroid problems can be a cause or a result of developmental disability Regular testing and treatment as indicated Spinal deformities Kyphosis, scoliosis, and lordosis are Monitoring of body habitus; common among patients with physical therapy muscle weakness and spasticity Seizure disorders Half of patients may suffer from some type of seizure disorder Diagnosis; anticonvulsant medications Degenerative joint disease Chronic muscle spasticity and mobility limitations often lead to osteoarthritis and joint disease. Strength and functional status may be prematurely impaired. Physical therapy, occupational therapy, pain management 24 DEVELOPMENTAL DISABILITIES AND COMORBIDITY (3 of 5) System/condition Change with developmental disabilities 25 Management strategies Osteopenia and osteoporosis Lack of weight bearing leads to these chronic conditions in patients who are unable to ambulate Promotion of mobility (physical therapy); adequate calcium and vitamin D supplementation, screening and treatment of osteoporosis Chronic pain syndromes Muscle abnormalities and associated spinal deformities often result in chronic pain syndromes. Sensory abnormalities can result in the inability to describe the type, location, and source of the pain. Regular monitoring of function and behavior to detect possible painful conditions; pain management DEVELOPMENTAL DISABILITIES AND COMORBIDITY (4 of 5) System/condition Change with developmental disabilities Management strategies Functional decline Aging patients with cerebral palsy and other Physical therapy, similar conditions often develop fatigue, pain, occupational therapy, weakness, and overuse syndromes that pain management result in premature loss of function. This is referred to as post-impairment syndrome and often requires a reduction in work hours, increase in assistance or use of adaptive devices, and/or nursing-home placement. Cardiac and pulmonary conditions Patients with cerebral palsy and other similar physical disabilities typically require 3−5 times the energy level of unimpaired adults, predisposing patients to premature conditions of aging, such as hypertension, heart failure, and coronary artery disease Monitoring for hypertension, shortness of breath, angina; risk factor management; engaging in regular physical activity and healthy diet 26 DEVELOPMENTAL DISABILITIES AND COMORBIDITY (5 of 5) System/condition Change with developmental disabilities Management strategies GI conditions Gastroesophageal reflux disease and constipation are common; constipation can be chronic and severe Monitoring; medications; fiber-rich diet; exercise Incontinence Many patients are incontinent of bowel and bladder from childhood, but others develop these problems with age Screening for treatable causes; identifying functional impairments that can limit toileting Depression and mood disorders Patients with cerebral palsy are 4 times more likely to develop depression as age-compared other adults. The stress associated with multiple disabilities is a risk factor, as is the premature decline in functional status associated with the disorder. Regular screening; counseling and/or medications for those diagnosed with mood disorder 27 28 S U M M A RY ( 1 o f 2 ) • An increasing number of individuals with ID are surviving into adulthood and old age. • Maladaptive behaviors, as well as difficulties in learning and retaining new skills of coping and adaptation, are significant problems for adults with ID and, consequently, for their caregivers. • Impairments in receptive and expressive communication and coexisting cognitive limitations can contribute to difficulties in the diagnosis and treatment of medical, psychiatric, and behavioral problems. 29 S U M M A RY ( 2 o f 2 ) • In individuals with ID, disease states and physiologic changes related to age can exacerbate or attenuate maladaptive behaviors. • Therapeutic interventions for maladaptive behaviors or psychiatric illnesses that coexist with ID can include medications and behavioral therapies. • The term “developmental disability” can be applied to a variety of medical conditions that are not defined by ID. However, these conditions can contribute to maladaptive behaviors and affect an individual’s quality of life. 30 CASE 1 (1 of 3) • A 60-year-old man with an intellectual disability who lives in a residential facility, accompanied by a new staff person • Staff person reports that her colleagues have noted the following over the past few days: An increase in self-injurious behaviors (biting himself, hitting his head on the wall), both at the residence and at the workshop he attends daily. No serious injury has occurred. Although he has no history of aggression toward others, he recently struck out at another resident who bumped into him in the dining room. The behaviors significantly worsened after he visited his mother, who is in a nursing facility recovering from hip fracture. • The patient says that he has no pain or other physical complaint. • When asked about his behavior, he states that he is sad but is unable to explain in more detail. 31 CASE 1 (2 of 3) Which one of the following is the best initial strategy for treating the behavioral disturbance? A. Provide support and behavioral interventions at residence and workshop. B. Provide support and behavioral interventions at residence, and stop workshop attendance until behavior improves. C. Start risperidoneOL 0.25 mg/d. D. Admit to inpatient psychiatric unit for observation and treatment. 32 CASE 1 (3 of 3) Which one of the following is the best initial strategy for treating the behavioral disturbance? A. Provide support and behavioral interventions at residence and workshop. B. Provide support and behavioral interventions at residence, and stop workshop attendance until behavior improves. C. Start risperidoneOL 0.25 mg/d. D. Admit to inpatient psychiatric unit for observation and treatment. 33 CASE 2 (1 of 3) • A 55-year-old woman with Down syndrome, accompanied by her parents, with whom she has lived her entire life • Parents report a change in her ability to perform tasks that she had previously mastered. • They do not know when the change first began, but their son visited recently and noticed a difference compared with when he last saw her 1 year ago. 34 CASE 2 (2 of 3) Which one of the following is the best tool for assessing whether this patient may have dementia? A. Functional Assessment Staging Test (FAST) B. Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) C. Down Syndrome Mental Status Examination (DSMSE) D. Mini–Mental Status Examination (MMSE) E. Montreal Cognitive Assessment (MoCA) 35 CASE 2 (3 of 3) Which one of the following is the best tool for assessing whether this patient may have dementia? A. Functional Assessment Staging Test (FAST) B. Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) C. Down Syndrome Mental Status Examination (DSMSE) D. Mini–Mental Status Examination (MMSE) E. Montreal Cognitive Assessment (MoCA) 36 CASE 3 (1 of 4) • A 58-year-old woman with an intellectual disability, accompanied by her parents. They want to establish care in a practice that has mostly female providers; the patient refuses to see male providers. • History includes a seizure disorder. Seizures occur 1-2 times each month, despite medication. Seizure frequency and the medication regimen have not changed recently. • She has lived with the family most of her life, except for a few months in a group home in her early 20s that did not work out because “some bad things happened.” She came to the office today because her parents promised her ice cream after the visit and told her that she would not get any shots. 37 CASE 3 (2 of 4) • She has never had a Pap smear or undergone mammography or colonoscopy. She has had the same eyeglass prescription for 5 years. • The patient refuses to undress and allows only a limited examination. She has very poor dentition, consistent with her refusal to go to the dentist. She is overweight. Gait is normal. 38 CASE 3 (3 of 4) Which one of the following is the best next step in providing care for this patient? A. Order mammography and refer to a gynecologist for Pap smear. B. Have blood drawn for medication levels at end of visit. C. Refill prescriptions and schedule follow up in 3 months. D. Provide education on healthy lifestyle changes and follow up in 2 weeks. E. Refer for dental work and Pap smear under general anesthesia. 39 CASE 3 (4 of 4) Which one of the following is the best next step in providing care for this patient? A. Order mammography and refer to a gynecologist for Pap smear. B. Have blood drawn for medication levels at end of visit. C. Refill prescriptions and schedule follow up in 3 months. D. Provide education on healthy lifestyle changes and follow up in 2 weeks. E. Refer for dental work and Pap smear under general anesthesia. 40 GNRS5 Teaching Slides Editor: Barbara Resnick, PhD, CRNP, FAAN, FAANP, AGSF GNRS5 Teaching Slides modified from GRS9 Teaching Slides based on chapter by Elizabeth Galik, PhD, CRNP and Andrew Warren, MB, BS, DPhil and questions by Rebecca Wysoske, MD Managing Editor: Andrea N. Sherman, MS Copyright © 2016 American Geriatrics Society