Mental Retardationand Psychiatric Disorders Magda Campbell, M.D. Richard
P. Malone, M.D.
Estimates of the prevalence of co morbidity ofpsycbiatric disorders and mental retardation in commu nity anddinicalpopulations range from 14.3 to 67.3 percent. A wide variety of disorders have been re ported in this population, includ ing schizophrenia, depression, and, commonly, conduct disorder. The incidence of specfic disorders ap pears to be related to the level of retardation and the concomitant presence of seizure disorder. Ac
psychiatric patients. Only a few psy chiatrists and child psychiatrists have training in the treatment of this population, and in most jurisdictions in the United States, mental health and mental retardation services func tion independently and have separate funding mechanisms (1). One of the most difficult tasks is to provide a retarded individual with an adequate psychiatric diagnostic evaluation and appropriate treatment (1,2). This paper reviews findings about the prevalence of comorbidity of mental retardation and psychiatric disorder, discusses diagnostic and
population ofdeveloping psychiatric disorders (1,4—6).Before the devel opment of modern classification sys tems and IQ testing, mental illness and mental retardation were not clearly differentiated (4). In recent decades, mentally re tarded persons have been considered separately from those with mental disorders in the psychiatric litera ture. One result of that separation
has been that the diagnosticsystems
Dr. Campbell is professor of psy
(3)- Mentally retardedpeoplegen
chiatry and director of the division of child and adolescent psychiatry at New York Univer sity Medical Center, 550 First Aye
Center.
erally have an IQ below 70 and im pairments in social, communicative, and daily living skills and are unable to lead an independent life. An es timated 3 percent of the population is mentally retarded, though newer studies and DSM-IlI-R give a figure of 1 percent. Mentally retarded persons may be free of psychiatric problems. How ever, retarded persons may develop maladaptive behaviors and are at higher risk than the nonretarded
for psychiatric illness that were de veloped for persons with normal in tellectual functioning are difficult to apply to mentally retarded patients. Furthermore, because mentally retarded patients have often been omitted from treatment studies, it is difficult to determine whether treat ments that are known to be effective for patients with normal intelligence are effective for mentally retarded patients. Because of the disagreement in applying current systems of clas sification of mental disorders to mentally retarded patients, Gualtieri and Koppel (7) suggested using a two-tiered approach to diagnosis particularly for severely and pro foundly retarded patients. This ap proach would take into consideration both the psychiatric diagnosis and the behavioral problems present, especially for patients whose mal adaptive behaviors do not meet the criteria for a disorder. Behavioral symptoms. Mentally retarded individuals may show a variety of maladaptive behaviors, in cluding stereotypies, destructive be haviors, pica, and smearing feces. Some of these behaviors are seen at early developmental stages in normal infants, and there is some question about whether these behaviors can be considered symptoms of psychiatric
374
April 1991
Hospital and Community Psychiatry
curate assessment of psychiatric disorders in this population
is dif
ficult because mentally retarded patients have poor communication skills and because most diagnostic instruments were developed for
persons
of normal
functioning.
intellectual
Treatment
indudes
educational, behavioral, and phar macological interventions, but guidelines for safe use of psycho therapeutic drugs are needed. Mentally retarded persons with a psychiatric disorder are among the most underserved populations of
flue,New York,New York 10016. Dr. Malone is assistant professor in the department of mental health sciences at Hahnemann University in Philadelphia. He
formerlywas clinicalinstructorof psychiatry
and a research
fellow
at New York University Medical
treatment
issues, and suggests future
directions for research. Although mentally retarded persons with psy chiatric disorders remain an under served population, interest in these patients, who are also known as dual ly diagnosed patients, has grown during the past 20 years. Mental
retardation
Essentialfeatures. DSM-IlI-R clas sifies mental retardation as a devel opmental disorder listed on axis II (3). The essential features ofthe diag nosis are ‘¿ ‘¿significantlysubaverage general intellectual functioning, ac companied by significant deficits or impairments in adaptive function ing, with onset before the age of 18―
Vol. 42
No. 4
disorder in severely retarded persons (8). Intentional, repetitive, nonfttnc tional behaviors that may result in seW-injury may be considered symp toms of the DSM-lll-I? diagnosis of stereotypy/habit disorder. Destructive
behaviors,
including
aggressiveness directed toward other persons, property destruction, and self-injurious behavior, are among the most distressing of maladaptive behaviors. An estimated 160,000 mentally retarded patients in the United States show destructive be haviors; the cost of care for these pa
the discharge of mentally retarded persons into community settings, the care and treatment of this popu lation underwent marked changes (16). Strong support systems were required, but such resources were often inadequate in both number and quality ( 1). In addition, with deinsti tutionalization and efforts at nor malization, the need to have avail able resources for acute psychiatric hospitalization increased . Several model acute inpatient programs for mentally retarded patients have been developed (17—19).
tients in 1989 was about $3 billion (9).
The prevalence of destructive be havior, particularly self-injurious be havior, increases with the degree of mental retardation (10). Social and environmental influences also oper ate in the development of destructive behaviors. The prevalence of self-in jurious behavior, the most disturb ing of these behaviors and the most resistant to treatment, ranges from 10 to 15 percent among mentally retarded persons in institutional set tings (1 1, 12) and is as low as 2.6 per cent in community settings (13). Certain syndromes are associated with aggressive behaviors. For ex ample, self-injurious behavior is seen in Lesch-Nyhan syndrome and Cor nelia de Lange syndrome (4,14). Maladaptive behaviors, particularly destructive behaviors, are the main reason that retarded persons in corn munity placements are readmitted to residential treatment facilities (15). Residential settings Until the 1970s about 10 percent of retarded children and adults were housed in large institutions, usually run by the states. Significantly, in the 1970s, education was mandated for all retarded children, and institu tionalized persons had the right to
Prevalence of psychiatric disorders A wide range ofpsychiatric disorders have been reported in mentally retarded patients, and the prevalence of specific disorders varies from report to report (1,3,6,8,17,20—25). The rates are influenced by several variables, includi ng methodology, study setting, sample selection, subjects' level of mental retardation and age, and the diagnostic criteria used. Epidemiologic studies. Several epidemiologic studies that inves tigated the presence of psychiatric disorders in the mentally retarded were recently reviewed by Dibble and Gray (8). A recent National In stitute of Mental Health workshop examining research biases empha sized that most epidemiological studies of retarded patients involve school-age children and institution alized persons (8). In a study on the Isle of Wight, Rutter and associates
(26) found that behavioraldistur
malized conditions in private or pub lic community-based residential fa cilities. Mentally retarded persons who remain in restrictive or institu tional settings usually have severe behavioral problems or physical or sensory handicaps. With deinstitutionalization and
bances were three to four times more common in mentally retarded chit dren than in same-aged control sub jects. Kotter and associates (27) studied all of the children from a four-year cohort who had been identified as mentally retarded and placed in a special school, training center, or res idential setting. When the children were 22 years old, retrospective evaluation was completed through interviews of the patients and their families. Overall, 61 percent of the mentally retarded population was found to have behavioral disturbance in childhood, and 59 percent had be havioral disturbance in the post
Hospital and Community Psychiatry
April 1991
habilitation
(1).
Currently, the majority of these individuals have left the institutions
and liveunder lessrestrictiveor nor
Vol. 42
No.4
school period. Subjects with an IQ less than 50 were more likely to have hyperactivity
and aggressive conduct
disorder than those with an IQ great er than 50. The study lacked control subjects and used inconsistent diag nostic criteria, and some subjects who were labeled mentally retarded
had an IQ greater than 70. Lund (28) interviewed a represen tative sample of mentally retarded adults using a register of the Danish National Service for the Mentally Retarded. Computer-assisted psy chiatric diagnoses were made using modified Feighner and DSM-III cri teria for eight disorders. Overall, a psychiatric diagnosis was made in 27. 1 percent ofthe study population. Behavioral disorder was the most common diagnosis, found in 10 per cent of the study population. De mentia increased with age and was found in 22.2 percent of subjects over age 65 . Schizophrenia, affective disorder, and psychosis of uncertain type were found in 1.3, 1.7, and 5 percent, respectively, of the study population. Patients with active seizure disorder were more likely than other patients to have a psychi atric disorder (29). Gillberg and associates (30) inves tigated the prevalence of seven psy chiatric disorders with well-defined diagnostic criteria in children aged 13 to 17 born in a Swedish urban area. Sixty-four percent of children with an IQ less than 50, and 57 per cent ofthose with mild mental retar dation (IQ of 50 to 70) had a psychi atric disorder. The most common diagnosis in children with severe mental retardation was psychotic be havior, which included infantile autism and schizophrenia. Fifty per cent ofthe population had this diag nosis. Only 14 percent ofthe mildly mentally children had a diagnosis of psychotic behavior. Other diagnoses in the mildly mentally retarded chil dren included emotional disorder (1 0 percent), conduct disorder (12 percent), and hyperactivity disorder (14 percent). Seizure disorder co existed with psychiatric disorder in patients with mild mental retarda tion, but not in severely mentally retarded patients. None of the chil dren in their study with Down's syn 375
drome and mild mental retardation
had a psychiatric diagnosis. Although it is difficult to corn bine the results of these studies, it is clear that a significant percentage of the mentally retarded population suffer from a psychiatric disorder. In addition, both the level ofmental re tardation and the presence of a seizure disorder
influence
the preva
lence of psychiatric disorder. Gill berg and associates' (30) finding of a low frequency ofpsychiatric disorder associated with Down's syndrome suggests that the etiology of mental retardation may affect the rate of psy chiatric disorder. Surveys of clinical populations. Studies ofclinical populations have reported that 30 to 67.3 percent of retarded persons have a psychiatric disorder (5,6,22,3 1—34).In a well designed study involving 1 10 sub jects, Kazdin and associates (33) fbund that 67.3 percent were dually diagnosed. Subjects ranged in age from 18 to 71 years, and most were mildly to moderately retarded. Fifty
one subjectswereoutpatientsevalu ated in a mental health center af filiated with a university, and 59 were patients in a large state hospi
tal. Several instruments for measur ing depression were used, including
the Hamilton Rating ScaleforDe pression (35). In addition, the Psy chopathology Instrument for Men tally Retarded Adults (36), a self report instrument,
was used. Ten pa
tients received a diagnosis of depres sion; depression was more common
years. Diagnoses were made using DSM-lII criteria, and a wide range of psychopathology was found. The most common diagnosis was con duct disorder, reported in 38.9 per cent ofthe population. Eaton and Menolascino (20) re ported on 168 retarded persons who were referred for psychiatric evalua tion. Subjects ages' ranged from six to 76 years. They represented 2 1 per
psychiatrists, child psychiatrists, psychologists, nurses, and social workers. As early as the 1960s, Pro vence and Marsh (37) identified the problem of accurately classifying psychiatric disorders in mentally retarded children. Although some progress has been made, many dif ficulties remain to be overcome (9). The retarded person's cognitive functioning
deteriorates
under
Because many retarded persons have poor
stress, making diagnosis even more difficult (2 1). Furthermore, the axis I diagnoses ofDSM-IJI (38) and DSM lll-R were developed for persons of normal intellectual functioning.
communication
Senatore and associates (36) have dis
diagnosis
skills,
often must
be based on clinical impressions,
observations,
and information from caretakers.
cent ofa sample ofrnentally retarded persons who were in community
set
tings in Nebraska. A total of 114 subjects, 14.3 percent of the entire population, were found to be men tally ill. Ofthe mentally ill subjects, 21 percent had schizophrenia, 21 percent had adjustment reaction, 29.8 percent had organic brain syn drorne with transient psychotic or behavioral reactions, and 27 .1 per cent had personality disorder. No one received a diagnosis of depres sion. Menaloscino and associates (6) re ported on 543 retarded persons who were in an acute psychiatric hospital. Twenty-five percent were diagnosed as having schizophrenia. The age of onset of three of these patients was under 12 years ofage. Eight percent
cussed specific factors that limit the use of DSM diagnostic criteria in psychiatrically ill retarded persons. Overall, psychiatric disorders are less difficult to diagnose in persons with mild and moderate mental re tardation than in those who are severely or profoundly retarded. Be cause many retarded persons have poor language and communication skills, diagnosis often must be based on clinical impressions, observa tions, and information from care takers. It is particularly difficult to make a psychiatric diagnosis in a nonverbal person with an IQ below 20 who has associated symptoms of destructive behavior or self-injurious behavior. The issues involved in making a diagnosis of a psychiatric disorder in retarded persons have been addressed by Matson (39), Menolascino (40), Mouchka (41), Sovner (42), and others (43).
1 13 mentally retarded individuals living in the community who were referred for psychiatric evaluation. Subjects ranged in age from 10 to 21
Diagnostic assessment. The evalua
Structured and semistructured clinical interviews with operational ly defined diagnostic criteria have been developed for both adults and children with psychiatric disorders (44—47). The development of these instruments facilitated communi cation between investigators and provided a method ofemploying the same diagnostic criteria across pa tient samples. The utility ofthese in struments with retarded persons has not been demonstrated. Based on DSM-III criteria, the Psychopathology Instrument for Mentally Retarded Adults consists of
tion and diagnosis of mental illness in retarded children and adults re quires the expertise and teamwork of
ment disorder, affective disorder, anxiety disorder, personality disor
376
April 1991
in inpatients
than in outpatients
(33).
This study showed that retarded in dividuals were able to report reliably about symptoms of depression.
In 1972, Jakab(5) fuundthat 30 percent ofthe 595 mentally retarded children referred to the Eunice Shriver Kennedy Center at Wal tham, Massachusetts, had psychiat nc disorders. Ofthe 194 dually diag nosed children,
9 percent
had schizo
phrenia, about 9 percent had autism
or autisticbehavior,and 10 percent suffered from depression. Myers (34) reported on a group of
had affective disorders. Other diag noses included psychosexual disor ders, anxiety disorders, personality disorders, and anorexia nervosa. Clearly, more severe psychiatric dis orders were found in this inpatient study than in the populations re ferred for outpatient evaluation. Assessment
and treatment
Vol. 42
No. 4
57 itemsandhassubscalesforadjust
Hospital and Community Psychiatry
der, poor mental adjustment, psy chosexual disorder, schizophrenia, and somatoform disorder (36). Fac tor analysis ofthe measure showed the following factors: anxiety, social adjustment,
identity
and reality pro
blems, and an unlabeled factor (33,
48,49). A self-reportscalebasedon the instrument is available (33,36, 39). The Beck Depression Inventory (50) and the Zung
Self-Rating
De
pression Scale (5 1) were simplified and adapted for use with retarded pa tients by Kazdin and associates (33). These instruments, along with the Hamilton Rating Scale for Depres sion (35), have been used to assess de pression in dually diagnosed in patients and outpatients. All three scales were found to be useful and ap propriate for the population under study (33). Assessing treatmentoutcome. The effects of treatment may not be reflected in the same instruments that yield a diagnosis (9). Checklists, interval observations, frequency and symptom counts, general instru ments yielding a behavioral profile, and videotaping are among the methods used to assess treatment outcome. Aman and Singh (52) developed the well-researched Aberrant Behav ior Checklist. The scale specifically assesses the effects of treatment, in cluding pharmacotherapy, in moder ately to profoundly retarded persons. The 58 items on the checklist are grouped into five subscales: ir ritability, agitation, crying; lethargy, social withdrawal; stereotypic be havior; hyperactivity, noncompli ance; and excessive speech. Each item is rated from 0 (not at all a problem) to 3 (the problem is severe). The Brief Psychiatric Rating Scale (53) and the Katz Rating Scale (54) were shown to be sensitive to change due to neuroleptic administration in a clinical trial of mentally retarded schizophrenic patients (43). Most research about effectiveness of treatment has been conducted with retarded persons who show destructive behavior. Treatment mo dalities for dually diagnosed patients include individual psychotherapy, group psychotherapy, fi'mily therapy and counseling, work with care Hospital
and Community
Psychiatry
givers, behavioral approaches, phar macotherapy, special education, and vocational rehabilitation (1,5,17, 55—57).Preventive measures are also emphasized by some experts (58). Recent research on the treatment of psychiatric disorders in mentally retarded persons with disruptive be haviors was critically assessed at a National Institutes of Health con sensus development conference (14, 59—61).Particularly in reference to self-injurious behavior, the consen sus was that behavioral methods, in cluding aversive interventions such as the Self-Injurious Behavior In hibiting System, a two-piece device powered by nine-volt batteries, are more effective than psychopharma cologic treatments. One difficulty is that reports on the efficacy of behav ioral interventions involve mainly single-case
studies that use an inten
sive (within-patient) design. Behav ioral interventions are very costly and must be administered by highly trained professionals. There are less than ten such experts in this country. Behavioral interventions may be more effective and longer lasting in children than in adults (62). Pharmacological interventions. Studies of the effectiveness of psy choactive agents for mentally re tarded persons with mental illness have recently been reviewed ( 1,63— 65). Geller (66) discussed method ological issues in the design of phar macological studies of dually diag nosed patients. These issues include characteristics of the study popula tion (including the presence or ab sence of seizure disorders), appropri ate measures, and compliance with the study protocol. Neuroleptics are commonly pre scribed for disruptive behaviors and, occasionally, for stereotypies. Chlor promazine and thioridazine are the most frequently administered neuro leptics, and both are often used on a long-term basis. However, for the many retarded persons who suffer from seizure disorders, chlorproma zine is contraindicated because it lowers the seizure threshold and in creases the frequency ofseizures (67). The role of psychoactive drugs and guidelines for their safe use in this population remain to be estab April 1991
Vol. 42
No.4
lished. Several unsatisfactory prac tices, including polypharmacy, rapid dose escalation, inadequate baseline assessment, and inadequate clinical and laboratory monitoring, charac terize the clinical practice of pharma cotherapy in dually diagnosed pa tients. In recent years drug monitor ing programs have been introduced in several institutions, resulting in the discontinuation of medication in as many as 50 to 60 percent of sub jects ( 1). Clearly, many retarded per sons did not benefit from pharmaco therapy, and many suffered from long-term side effects including tar dive dyskinesia (68) and impairment of cognition. Haloperidol, lithium, beta block ers, and naltrexone appear to be help fIJIin decreasing destructive behav ior in some individuals (1,69). How ever, carefully designed double blind and placebo-controlled studies using appropriate, sensitive rating instru ments are needed to determine the effectiveness of these drugs (66). Psychoactive
drugs should be used in
conjunction with behavioral tech niques in an enriched psychosocial environment. The effect of antidepressants in dually diagnosed patients has not been systematically studied and eval uated. However, mentally retarded persons who suffer from major de pression are likely to benefit from these drugs. The clinician must be cautious in prescribing antidepres sants, because mentally retarded pa tients frequently suffer from seizure disorders and may have a lower sei zure threshold than persons of nor mal intelligence. For example, im ipramine may not be appropriate for mentally retarded patients because of its epileptogenic properties (70). The lowest dosages of psychoac tive drugs that are effective in treat ing mentally retarded persons with
dual diagnosis are not known. How ever, the effective dosage can vary in different populations and in different settings. For example, in a double blind study of thiothixene versus thioridazine, the optimal doses of both drugs were higher for schizo phrenic patients of normal intel ligence than for mentally retarded schizophrenic patients (43). 377
Conclusions Mental disorders exist and can be di agnosed in mentally retarded per sons. However, much more work needs to be done in classifying those disorders. Although few studies ad dress the treatment of mental disor ders and behavioral problems in mentally retarded persons, the Na tional Institutes of Health and the National
Institute
ofMental
Health
recently showed their concern for mentally retarded persons who have severe behavioral problems by focus ing on their problems in workshops and conkrences (9,7 1). The following suggestions are of fered for future research to advance knowledge about appropriate treat ment of mental illness in mentally retarded persons.
.
Researchersshould clarify the
phenomenologyand epidemiology of behavioral and psychiatric disorders as they occur in mentally retarded persons.
.
Assessment instruments and
procedures should be developed to aid in the diagnosis ofmental illness in mentally retarded persons.
.
Instruments to measure treat
ment effectiveness should be devel oped.
.
14. Schroeder SR, RojahnJ, OldenquistA:
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Nonaversive Interventions. Edited by Harris SL, Handleman JS. New Brunswick, NJ, Rutgers University Press, in press 70. Perti TA, Campbell M: Imipramine and
seizures. AmericanJournal of Psychiatry 132:538—540,1975 71 . Dibble ED: Summary: challenges for re
search. Psychopharmacology Bulletin 22:1086—1087,1986
New Collection
of
H&CP Audiovisual Reviews
Available
59. Cart EG, TaylorJC, CarlsonJI, et al: Reinforcement and stimulus-based treatments for severe behavior problems
in developmental disabilities, in Treat ment of Destructive
Behaviors. Edited
by Hill J. Bethesda, Md, National In stitutes ofHealth, in press 60. Cataldo MF: The effects of punishment and other behavior-reducingprocedures on the destructive behaviors of persons with developmental disabilities, ibid
61 . Thompson T, Hackenberg T, Schaal D: Pharmacological treatments for behavior problems in developmental disabilities, ibid 62. Shapiro ES: Restitution and positive
practice overcorrection in reducing ag gressive-disruptive
behavior: a long
term follow-up. Journal of Behavior Therapy and Experimental
Psychiatry
10:131—134, 1979 63. LipmanRS:Overviewofresearchin pay chopharmacological treatment of the mentally ill-mentally retarded. Psycho pharmacology Bulletin 22:1046-1054, 1986
64. IntagliataJ, Rinck C: Psychoactive drug use in public and community
residential
facilities for mentally retardedpersons. Psychopharmacology 278, 1985
Bulletin 21:268—
65. Hill BK, BalowEA, BruininksRH: A national study of prescribed drugs in institutions and community residential
April 1991
Vol. 42
No.4
Reviews of more than 60 videotapes
and films that appeared in Hospital and Community Psychiatry's bimonth ly audiovisual column between 1984 and 1990 have been compiled into a booklet published by the Hospital and Community Psychiatry Service. The 64-page booklet, Video and Film Reviews: Collected Columns From H&CP, includes an introduction by Ian Alger, M.D., editor of H&CP's audiovisual column and consultant to the audiovisual library maintained by the H&CP Service. Almost 30 of the videos reviewed in the booklet are included in the H&CP Service video collection. Topics include schizophrenia, manic-depressive dis order, malpractice, teenage pregnan cy, and AIDS.
The booklet is available from the
H&CP Service, 1400 K Street, N.W., Washington, D.C. 20005, for $8.50 a copy. Copies ofthe H&CP Service video catalog are available at no charge.
379
P. Malone, M.D.
Estimates of the prevalence of co morbidity ofpsycbiatric disorders and mental retardation in commu nity anddinicalpopulations range from 14.3 to 67.3 percent. A wide variety of disorders have been re ported in this population, includ ing schizophrenia, depression, and, commonly, conduct disorder. The incidence of specfic disorders ap pears to be related to the level of retardation and the concomitant presence of seizure disorder. Ac
psychiatric patients. Only a few psy chiatrists and child psychiatrists have training in the treatment of this population, and in most jurisdictions in the United States, mental health and mental retardation services func tion independently and have separate funding mechanisms (1). One of the most difficult tasks is to provide a retarded individual with an adequate psychiatric diagnostic evaluation and appropriate treatment (1,2). This paper reviews findings about the prevalence of comorbidity of mental retardation and psychiatric disorder, discusses diagnostic and
population ofdeveloping psychiatric disorders (1,4—6).Before the devel opment of modern classification sys tems and IQ testing, mental illness and mental retardation were not clearly differentiated (4). In recent decades, mentally re tarded persons have been considered separately from those with mental disorders in the psychiatric litera ture. One result of that separation
has been that the diagnosticsystems
Dr. Campbell is professor of psy
(3)- Mentally retardedpeoplegen
chiatry and director of the division of child and adolescent psychiatry at New York Univer sity Medical Center, 550 First Aye
Center.
erally have an IQ below 70 and im pairments in social, communicative, and daily living skills and are unable to lead an independent life. An es timated 3 percent of the population is mentally retarded, though newer studies and DSM-IlI-R give a figure of 1 percent. Mentally retarded persons may be free of psychiatric problems. How ever, retarded persons may develop maladaptive behaviors and are at higher risk than the nonretarded
for psychiatric illness that were de veloped for persons with normal in tellectual functioning are difficult to apply to mentally retarded patients. Furthermore, because mentally retarded patients have often been omitted from treatment studies, it is difficult to determine whether treat ments that are known to be effective for patients with normal intelligence are effective for mentally retarded patients. Because of the disagreement in applying current systems of clas sification of mental disorders to mentally retarded patients, Gualtieri and Koppel (7) suggested using a two-tiered approach to diagnosis particularly for severely and pro foundly retarded patients. This ap proach would take into consideration both the psychiatric diagnosis and the behavioral problems present, especially for patients whose mal adaptive behaviors do not meet the criteria for a disorder. Behavioral symptoms. Mentally retarded individuals may show a variety of maladaptive behaviors, in cluding stereotypies, destructive be haviors, pica, and smearing feces. Some of these behaviors are seen at early developmental stages in normal infants, and there is some question about whether these behaviors can be considered symptoms of psychiatric
374
April 1991
Hospital and Community Psychiatry
curate assessment of psychiatric disorders in this population
is dif
ficult because mentally retarded patients have poor communication skills and because most diagnostic instruments were developed for
persons
of normal
functioning.
intellectual
Treatment
indudes
educational, behavioral, and phar macological interventions, but guidelines for safe use of psycho therapeutic drugs are needed. Mentally retarded persons with a psychiatric disorder are among the most underserved populations of
flue,New York,New York 10016. Dr. Malone is assistant professor in the department of mental health sciences at Hahnemann University in Philadelphia. He
formerlywas clinicalinstructorof psychiatry
and a research
fellow
at New York University Medical
treatment
issues, and suggests future
directions for research. Although mentally retarded persons with psy chiatric disorders remain an under served population, interest in these patients, who are also known as dual ly diagnosed patients, has grown during the past 20 years. Mental
retardation
Essentialfeatures. DSM-IlI-R clas sifies mental retardation as a devel opmental disorder listed on axis II (3). The essential features ofthe diag nosis are ‘¿ ‘¿significantlysubaverage general intellectual functioning, ac companied by significant deficits or impairments in adaptive function ing, with onset before the age of 18―
Vol. 42
No. 4
disorder in severely retarded persons (8). Intentional, repetitive, nonfttnc tional behaviors that may result in seW-injury may be considered symp toms of the DSM-lll-I? diagnosis of stereotypy/habit disorder. Destructive
behaviors,
including
aggressiveness directed toward other persons, property destruction, and self-injurious behavior, are among the most distressing of maladaptive behaviors. An estimated 160,000 mentally retarded patients in the United States show destructive be haviors; the cost of care for these pa
the discharge of mentally retarded persons into community settings, the care and treatment of this popu lation underwent marked changes (16). Strong support systems were required, but such resources were often inadequate in both number and quality ( 1). In addition, with deinsti tutionalization and efforts at nor malization, the need to have avail able resources for acute psychiatric hospitalization increased . Several model acute inpatient programs for mentally retarded patients have been developed (17—19).
tients in 1989 was about $3 billion (9).
The prevalence of destructive be havior, particularly self-injurious be havior, increases with the degree of mental retardation (10). Social and environmental influences also oper ate in the development of destructive behaviors. The prevalence of self-in jurious behavior, the most disturb ing of these behaviors and the most resistant to treatment, ranges from 10 to 15 percent among mentally retarded persons in institutional set tings (1 1, 12) and is as low as 2.6 per cent in community settings (13). Certain syndromes are associated with aggressive behaviors. For ex ample, self-injurious behavior is seen in Lesch-Nyhan syndrome and Cor nelia de Lange syndrome (4,14). Maladaptive behaviors, particularly destructive behaviors, are the main reason that retarded persons in corn munity placements are readmitted to residential treatment facilities (15). Residential settings Until the 1970s about 10 percent of retarded children and adults were housed in large institutions, usually run by the states. Significantly, in the 1970s, education was mandated for all retarded children, and institu tionalized persons had the right to
Prevalence of psychiatric disorders A wide range ofpsychiatric disorders have been reported in mentally retarded patients, and the prevalence of specific disorders varies from report to report (1,3,6,8,17,20—25). The rates are influenced by several variables, includi ng methodology, study setting, sample selection, subjects' level of mental retardation and age, and the diagnostic criteria used. Epidemiologic studies. Several epidemiologic studies that inves tigated the presence of psychiatric disorders in the mentally retarded were recently reviewed by Dibble and Gray (8). A recent National In stitute of Mental Health workshop examining research biases empha sized that most epidemiological studies of retarded patients involve school-age children and institution alized persons (8). In a study on the Isle of Wight, Rutter and associates
(26) found that behavioraldistur
malized conditions in private or pub lic community-based residential fa cilities. Mentally retarded persons who remain in restrictive or institu tional settings usually have severe behavioral problems or physical or sensory handicaps. With deinstitutionalization and
bances were three to four times more common in mentally retarded chit dren than in same-aged control sub jects. Kotter and associates (27) studied all of the children from a four-year cohort who had been identified as mentally retarded and placed in a special school, training center, or res idential setting. When the children were 22 years old, retrospective evaluation was completed through interviews of the patients and their families. Overall, 61 percent of the mentally retarded population was found to have behavioral disturbance in childhood, and 59 percent had be havioral disturbance in the post
Hospital and Community Psychiatry
April 1991
habilitation
(1).
Currently, the majority of these individuals have left the institutions
and liveunder lessrestrictiveor nor
Vol. 42
No.4
school period. Subjects with an IQ less than 50 were more likely to have hyperactivity
and aggressive conduct
disorder than those with an IQ great er than 50. The study lacked control subjects and used inconsistent diag nostic criteria, and some subjects who were labeled mentally retarded
had an IQ greater than 70. Lund (28) interviewed a represen tative sample of mentally retarded adults using a register of the Danish National Service for the Mentally Retarded. Computer-assisted psy chiatric diagnoses were made using modified Feighner and DSM-III cri teria for eight disorders. Overall, a psychiatric diagnosis was made in 27. 1 percent ofthe study population. Behavioral disorder was the most common diagnosis, found in 10 per cent of the study population. De mentia increased with age and was found in 22.2 percent of subjects over age 65 . Schizophrenia, affective disorder, and psychosis of uncertain type were found in 1.3, 1.7, and 5 percent, respectively, of the study population. Patients with active seizure disorder were more likely than other patients to have a psychi atric disorder (29). Gillberg and associates (30) inves tigated the prevalence of seven psy chiatric disorders with well-defined diagnostic criteria in children aged 13 to 17 born in a Swedish urban area. Sixty-four percent of children with an IQ less than 50, and 57 per cent ofthose with mild mental retar dation (IQ of 50 to 70) had a psychi atric disorder. The most common diagnosis in children with severe mental retardation was psychotic be havior, which included infantile autism and schizophrenia. Fifty per cent ofthe population had this diag nosis. Only 14 percent ofthe mildly mentally children had a diagnosis of psychotic behavior. Other diagnoses in the mildly mentally retarded chil dren included emotional disorder (1 0 percent), conduct disorder (12 percent), and hyperactivity disorder (14 percent). Seizure disorder co existed with psychiatric disorder in patients with mild mental retarda tion, but not in severely mentally retarded patients. None of the chil dren in their study with Down's syn 375
drome and mild mental retardation
had a psychiatric diagnosis. Although it is difficult to corn bine the results of these studies, it is clear that a significant percentage of the mentally retarded population suffer from a psychiatric disorder. In addition, both the level ofmental re tardation and the presence of a seizure disorder
influence
the preva
lence of psychiatric disorder. Gill berg and associates' (30) finding of a low frequency ofpsychiatric disorder associated with Down's syndrome suggests that the etiology of mental retardation may affect the rate of psy chiatric disorder. Surveys of clinical populations. Studies ofclinical populations have reported that 30 to 67.3 percent of retarded persons have a psychiatric disorder (5,6,22,3 1—34).In a well designed study involving 1 10 sub jects, Kazdin and associates (33) fbund that 67.3 percent were dually diagnosed. Subjects ranged in age from 18 to 71 years, and most were mildly to moderately retarded. Fifty
one subjectswereoutpatientsevalu ated in a mental health center af filiated with a university, and 59 were patients in a large state hospi
tal. Several instruments for measur ing depression were used, including
the Hamilton Rating ScaleforDe pression (35). In addition, the Psy chopathology Instrument for Men tally Retarded Adults (36), a self report instrument,
was used. Ten pa
tients received a diagnosis of depres sion; depression was more common
years. Diagnoses were made using DSM-lII criteria, and a wide range of psychopathology was found. The most common diagnosis was con duct disorder, reported in 38.9 per cent ofthe population. Eaton and Menolascino (20) re ported on 168 retarded persons who were referred for psychiatric evalua tion. Subjects ages' ranged from six to 76 years. They represented 2 1 per
psychiatrists, child psychiatrists, psychologists, nurses, and social workers. As early as the 1960s, Pro vence and Marsh (37) identified the problem of accurately classifying psychiatric disorders in mentally retarded children. Although some progress has been made, many dif ficulties remain to be overcome (9). The retarded person's cognitive functioning
deteriorates
under
Because many retarded persons have poor
stress, making diagnosis even more difficult (2 1). Furthermore, the axis I diagnoses ofDSM-IJI (38) and DSM lll-R were developed for persons of normal intellectual functioning.
communication
Senatore and associates (36) have dis
diagnosis
skills,
often must
be based on clinical impressions,
observations,
and information from caretakers.
cent ofa sample ofrnentally retarded persons who were in community
set
tings in Nebraska. A total of 114 subjects, 14.3 percent of the entire population, were found to be men tally ill. Ofthe mentally ill subjects, 21 percent had schizophrenia, 21 percent had adjustment reaction, 29.8 percent had organic brain syn drorne with transient psychotic or behavioral reactions, and 27 .1 per cent had personality disorder. No one received a diagnosis of depres sion. Menaloscino and associates (6) re ported on 543 retarded persons who were in an acute psychiatric hospital. Twenty-five percent were diagnosed as having schizophrenia. The age of onset of three of these patients was under 12 years ofage. Eight percent
cussed specific factors that limit the use of DSM diagnostic criteria in psychiatrically ill retarded persons. Overall, psychiatric disorders are less difficult to diagnose in persons with mild and moderate mental re tardation than in those who are severely or profoundly retarded. Be cause many retarded persons have poor language and communication skills, diagnosis often must be based on clinical impressions, observa tions, and information from care takers. It is particularly difficult to make a psychiatric diagnosis in a nonverbal person with an IQ below 20 who has associated symptoms of destructive behavior or self-injurious behavior. The issues involved in making a diagnosis of a psychiatric disorder in retarded persons have been addressed by Matson (39), Menolascino (40), Mouchka (41), Sovner (42), and others (43).
1 13 mentally retarded individuals living in the community who were referred for psychiatric evaluation. Subjects ranged in age from 10 to 21
Diagnostic assessment. The evalua
Structured and semistructured clinical interviews with operational ly defined diagnostic criteria have been developed for both adults and children with psychiatric disorders (44—47). The development of these instruments facilitated communi cation between investigators and provided a method ofemploying the same diagnostic criteria across pa tient samples. The utility ofthese in struments with retarded persons has not been demonstrated. Based on DSM-III criteria, the Psychopathology Instrument for Mentally Retarded Adults consists of
tion and diagnosis of mental illness in retarded children and adults re quires the expertise and teamwork of
ment disorder, affective disorder, anxiety disorder, personality disor
376
April 1991
in inpatients
than in outpatients
(33).
This study showed that retarded in dividuals were able to report reliably about symptoms of depression.
In 1972, Jakab(5) fuundthat 30 percent ofthe 595 mentally retarded children referred to the Eunice Shriver Kennedy Center at Wal tham, Massachusetts, had psychiat nc disorders. Ofthe 194 dually diag nosed children,
9 percent
had schizo
phrenia, about 9 percent had autism
or autisticbehavior,and 10 percent suffered from depression. Myers (34) reported on a group of
had affective disorders. Other diag noses included psychosexual disor ders, anxiety disorders, personality disorders, and anorexia nervosa. Clearly, more severe psychiatric dis orders were found in this inpatient study than in the populations re ferred for outpatient evaluation. Assessment
and treatment
Vol. 42
No. 4
57 itemsandhassubscalesforadjust
Hospital and Community Psychiatry
der, poor mental adjustment, psy chosexual disorder, schizophrenia, and somatoform disorder (36). Fac tor analysis ofthe measure showed the following factors: anxiety, social adjustment,
identity
and reality pro
blems, and an unlabeled factor (33,
48,49). A self-reportscalebasedon the instrument is available (33,36, 39). The Beck Depression Inventory (50) and the Zung
Self-Rating
De
pression Scale (5 1) were simplified and adapted for use with retarded pa tients by Kazdin and associates (33). These instruments, along with the Hamilton Rating Scale for Depres sion (35), have been used to assess de pression in dually diagnosed in patients and outpatients. All three scales were found to be useful and ap propriate for the population under study (33). Assessing treatmentoutcome. The effects of treatment may not be reflected in the same instruments that yield a diagnosis (9). Checklists, interval observations, frequency and symptom counts, general instru ments yielding a behavioral profile, and videotaping are among the methods used to assess treatment outcome. Aman and Singh (52) developed the well-researched Aberrant Behav ior Checklist. The scale specifically assesses the effects of treatment, in cluding pharmacotherapy, in moder ately to profoundly retarded persons. The 58 items on the checklist are grouped into five subscales: ir ritability, agitation, crying; lethargy, social withdrawal; stereotypic be havior; hyperactivity, noncompli ance; and excessive speech. Each item is rated from 0 (not at all a problem) to 3 (the problem is severe). The Brief Psychiatric Rating Scale (53) and the Katz Rating Scale (54) were shown to be sensitive to change due to neuroleptic administration in a clinical trial of mentally retarded schizophrenic patients (43). Most research about effectiveness of treatment has been conducted with retarded persons who show destructive behavior. Treatment mo dalities for dually diagnosed patients include individual psychotherapy, group psychotherapy, fi'mily therapy and counseling, work with care Hospital
and Community
Psychiatry
givers, behavioral approaches, phar macotherapy, special education, and vocational rehabilitation (1,5,17, 55—57).Preventive measures are also emphasized by some experts (58). Recent research on the treatment of psychiatric disorders in mentally retarded persons with disruptive be haviors was critically assessed at a National Institutes of Health con sensus development conference (14, 59—61).Particularly in reference to self-injurious behavior, the consen sus was that behavioral methods, in cluding aversive interventions such as the Self-Injurious Behavior In hibiting System, a two-piece device powered by nine-volt batteries, are more effective than psychopharma cologic treatments. One difficulty is that reports on the efficacy of behav ioral interventions involve mainly single-case
studies that use an inten
sive (within-patient) design. Behav ioral interventions are very costly and must be administered by highly trained professionals. There are less than ten such experts in this country. Behavioral interventions may be more effective and longer lasting in children than in adults (62). Pharmacological interventions. Studies of the effectiveness of psy choactive agents for mentally re tarded persons with mental illness have recently been reviewed ( 1,63— 65). Geller (66) discussed method ological issues in the design of phar macological studies of dually diag nosed patients. These issues include characteristics of the study popula tion (including the presence or ab sence of seizure disorders), appropri ate measures, and compliance with the study protocol. Neuroleptics are commonly pre scribed for disruptive behaviors and, occasionally, for stereotypies. Chlor promazine and thioridazine are the most frequently administered neuro leptics, and both are often used on a long-term basis. However, for the many retarded persons who suffer from seizure disorders, chlorproma zine is contraindicated because it lowers the seizure threshold and in creases the frequency ofseizures (67). The role of psychoactive drugs and guidelines for their safe use in this population remain to be estab April 1991
Vol. 42
No.4
lished. Several unsatisfactory prac tices, including polypharmacy, rapid dose escalation, inadequate baseline assessment, and inadequate clinical and laboratory monitoring, charac terize the clinical practice of pharma cotherapy in dually diagnosed pa tients. In recent years drug monitor ing programs have been introduced in several institutions, resulting in the discontinuation of medication in as many as 50 to 60 percent of sub jects ( 1). Clearly, many retarded per sons did not benefit from pharmaco therapy, and many suffered from long-term side effects including tar dive dyskinesia (68) and impairment of cognition. Haloperidol, lithium, beta block ers, and naltrexone appear to be help fIJIin decreasing destructive behav ior in some individuals (1,69). How ever, carefully designed double blind and placebo-controlled studies using appropriate, sensitive rating instru ments are needed to determine the effectiveness of these drugs (66). Psychoactive
drugs should be used in
conjunction with behavioral tech niques in an enriched psychosocial environment. The effect of antidepressants in dually diagnosed patients has not been systematically studied and eval uated. However, mentally retarded persons who suffer from major de pression are likely to benefit from these drugs. The clinician must be cautious in prescribing antidepres sants, because mentally retarded pa tients frequently suffer from seizure disorders and may have a lower sei zure threshold than persons of nor mal intelligence. For example, im ipramine may not be appropriate for mentally retarded patients because of its epileptogenic properties (70). The lowest dosages of psychoac tive drugs that are effective in treat ing mentally retarded persons with
dual diagnosis are not known. How ever, the effective dosage can vary in different populations and in different settings. For example, in a double blind study of thiothixene versus thioridazine, the optimal doses of both drugs were higher for schizo phrenic patients of normal intel ligence than for mentally retarded schizophrenic patients (43). 377
Conclusions Mental disorders exist and can be di agnosed in mentally retarded per sons. However, much more work needs to be done in classifying those disorders. Although few studies ad dress the treatment of mental disor ders and behavioral problems in mentally retarded persons, the Na tional Institutes of Health and the National
Institute
ofMental
Health
recently showed their concern for mentally retarded persons who have severe behavioral problems by focus ing on their problems in workshops and conkrences (9,7 1). The following suggestions are of fered for future research to advance knowledge about appropriate treat ment of mental illness in mentally retarded persons.
.
Researchersshould clarify the
phenomenologyand epidemiology of behavioral and psychiatric disorders as they occur in mentally retarded persons.
.
Assessment instruments and
procedures should be developed to aid in the diagnosis ofmental illness in mentally retarded persons.
.
Instruments to measure treat
ment effectiveness should be devel oped.
.
14. Schroeder SR, RojahnJ, OldenquistA:
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9. NIH Consensus Development Confer
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in
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.
interven
The National Institute of
Mental Health should increase fund ing for research and research training to develop a cadre of young inves tigators focusing on dually diag nosed patients. Acknowledgment This work was supported in part by National Institute of Mental Health grantsMH-40177, MH-32212, and 1-
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Manual of
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New Collection
of
H&CP Audiovisual Reviews
Available
59. Cart EG, TaylorJC, CarlsonJI, et al: Reinforcement and stimulus-based treatments for severe behavior problems
in developmental disabilities, in Treat ment of Destructive
Behaviors. Edited
by Hill J. Bethesda, Md, National In stitutes ofHealth, in press 60. Cataldo MF: The effects of punishment and other behavior-reducingprocedures on the destructive behaviors of persons with developmental disabilities, ibid
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April 1991
Vol. 42
No.4
Reviews of more than 60 videotapes
and films that appeared in Hospital and Community Psychiatry's bimonth ly audiovisual column between 1984 and 1990 have been compiled into a booklet published by the Hospital and Community Psychiatry Service. The 64-page booklet, Video and Film Reviews: Collected Columns From H&CP, includes an introduction by Ian Alger, M.D., editor of H&CP's audiovisual column and consultant to the audiovisual library maintained by the H&CP Service. Almost 30 of the videos reviewed in the booklet are included in the H&CP Service video collection. Topics include schizophrenia, manic-depressive dis order, malpractice, teenage pregnan cy, and AIDS.
The booklet is available from the
H&CP Service, 1400 K Street, N.W., Washington, D.C. 20005, for $8.50 a copy. Copies ofthe H&CP Service video catalog are available at no charge.
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