Assessing risk of injury in people with mental retardation living in an intermediate care facility

A brief instrument to assess risk of injury was applied retrospectively for 2 years and prospectively for 1 year to all people living in a large ICF/MR. Results suggest that the percentage of people who experienced an injury significantly increased across the levels of increasing risk indicated by the assessment. Furthermore, people who experienced an injury had significantly higher risk scores than those who did not. Using psychometric analyses, we found a mean correlation of .79 for interrater reliability and .90 for test-retest reliability on individual items and correlations of .91 and .95, respectively, on total score. We conclude that the assessment has promise as a reliable and valid method for predicting injury risk level.     

Clinical characteristics and service use of persons with mental illness living in an intermediate care facility.

OBJECTIVE: The study examined the characteristics of residents living in a 450-bed intermediate care facility for persons with severe mental illness in Illinois and sought to determine the factors predicting their utilization of mental health services. METHODS: Data on 100 randomly selected residents with a chart diagnosis of schizophrenia were collected using chart review and interviews. Data for 78 residents whose diagnosis of schizophrenia or schizoaffective disorder was confirmed using the Structured Clinical Interview for DSM-IV were included in the analyses. RESULTS: Fifty-three percent of the residents used facility-based specialty mental health services beyond medication management, such as group therapy or a day program. Persons with the least severe psychiatric illnesses and with higher levels of motivation for overall care used the most mental health services. Thirty-five percent of the residents had been discharged to an inpatient psychiatric unit during the previous year. Residents most likely to be discharged to those settings were young men with a history of homelessness who refused facility-based health services. CONCLUSIONS: Despite recent policy-driven efforts to improve care in this intermediate care facility for persons with mental illness, the facility continues to have problems addressing the mental health needs of the residents.     

Patterns in mortality over 60 years among persons with mental retardation in a residential facility

Records of 2,444 decreased institutionalized persons with mental retardation were examined for etiologies, disabilities, causes of death, and life expectancies over 60 years. Participants at most risk tended to have prenatal etiology of brain damage, to be young, and have the lowest IQs, epilepsy, poor mobility and feeding skills, and more medical complications. Most mortality was from respiratory infections. Epilepsy was present in 57.2% but was rare in people with Down syndrome. Sudden death occurred in 22.2% of these deceased residents. Over the years generally more residents had prenatal etiology of mental retardation, lower IQ, epilepsy, and were nonambulatory and older when they died.     

Mental health status of older persons with mental retardation in residential care settings

Older persons with mental retardation constitute a growing, chronically dependent population. Most of the older known persons in this group reside in some form of residential facility. While attention has been given in research to the mental health status of these people, studies have typically considered these issues within the context of a single facility or single type of facility. The current study employed a national survey of multiple facility types in order to ascertain patterns of adjustment and interpersonal functioning that are associated with being older, having mental retardation, and living in an out-of-home residential setting.     

One-year follow-up of persons discharged from a locked intermediate care facility

OBJECTIVES: This study examined outcomes during a one-year follow-up for persons who were discharged from a locked intermediate care facility in an urban area in California. The purpose of this study was to determine the extent to which persons with severe mental illness can be successfully transferred from an intermediate care facility to lower levels of care. METHODS: A total of 101 persons consecutively discharged were studied by record review and by obtaining information from facility staff members, therapists, case managers, and other community caretakers. RESULTS: During the follow-up period 56 percent of the patients who were discharged from the intermediate care facility were not able to demonstrate even minimal functioning in the community. These persons spent 90 or more days in locked or highly structured institutions that provided 24-hour care (including jail) or had five or more acute hospitalizations. However, 44 percent spent less than 90 days in these institutions and had fewer than five acute hospitalizations. Thirty-three percent were not known to have spent any time in an institution or hospital. CONCLUSIONS: The high rate of recidivism shown in this cohort suggests that the current emphasis on transferring patients from more structured, intermediate inpatient services to lower levels of care is not effective for a majority of patients. Furthermore, the poor clinical outcomes found in this cohort did not seem to be offset by any reduction in overall governmental costs because of the high use of acute and intermediate hospitalization and the costs of the criminal justice system.     

Prevalence of epilepsy in adults with mental retardation and related disabilities in primary care

Two primary care practices were used to recruit adults with and without disability. Disability groups included autism, Down syndrome, cerebral palsy, and mental retardation. The patients without disability had an epilepsy prevalence rate of 1%. The prevalence of epilepsy within the disability groups was 13% for cerebral palsy, 13.6% for Down syndrome; 25.4% for autism, 25.5% for mental retardation, and 40% for adults with both cerebral palsy and mental retardation. During the decades of adulthood, the prevalence of epilepsy declined for those with cerebral palsy and mental retardation. The prevalence of epilepsy increased with advancing years for adults with Down syndrome, autism, and those without disability. Nonetheless, during each decade the prevalence of epilepsy was higher in all of the disability groups compared to those without disability.     

Levetiracetam for people with mental retardation and refractory epilepsy

Levetiracetam (LEV) is a novel antiepileptic drug (AED) with efficacy against a wide range of seizures types. The aim of this observational study was to assess its effectiveness in patients with mental retardation and refractory epilepsy. Sixty-four patients were started on adjunctive LEV after a 3-month baseline. LEV was initially dosed at 250 mg daily and increased by 250 mg every 2 weeks thereafter according to clinical response. Caregivers rated the patient's sleep, appetite, alertness, and behavior as poor (1), reasonable (2), or good (3) at each clinic visit. Patients were reviewed until one of four endpoints was reached: seizure freedom for at least 6 months, > or = 50% reduction in seizure frequency (responder) over a 6-month period, <50% reduction in seizure frequency (marginal effect) over a 6-month period, or LEV withdrawal due to lack of efficacy, adverse effects, or both. Twenty-four (38%) patients became seizure-free, 10 of whom were controlled on LEV 250 mg twice daily. An additional 18 (28%) patients were classified as responders, and 8 (12%) reported only marginal benefit from adjunctive LEV. Fourteen (22%) patients discontinued LEV (6 worsening seizures, 1 lack of efficacy, 7 adverse effects). Caregivers rated combined sleep, appetite, alertness, and behavior scores as "improved" at the end of follow-up (P<0.001). LEV improved seizure control in the majority of patients with mental retardation and may also have enhanced their quality of life.     

Adjunctive lamotrigine for refractory epilepsy in adolescents with mental retardation

Epilepsy is a major comorbid condition in adolescents with mental retardation and is often characterized by multiple seizure types that are refractory to treatment. This study (n = 22) describes a subanalysis of data from a larger multicenter study of adjunctive lamotrigine therapy in patients with mental retardation and refractory epilepsy and focuses on the outcome measures of seizure reduction, safety and tolerability, and impact on behaviors in adolescents with mental retardation and refractory epilepsy. The study kept baseline antiepileptic drugs constant and titrated lamotrigine over 8 weeks to the target dose, followed by an 8-week maintenance phase and then a 12-week optimization phase during which all antiepileptic drugs and lamotrigine could be altered as clinically indicated. Sixty percent of subjects had a 50% decrease in seizures by the end of the maintenance phase and a mean 39% reduction in seizure frequency by the end of the maintenance phase (25% by end of study) compared with baseline. Global improvements were observed in most patients, with statistically significant improvements in the Aberrant Behavior Checklist and the Habilitative Improvement Scale, which is predictive of less need for supportive care in activities of daily living and thus enhanced potential for greater independence. Lamotrigine-associated improvements in behavior can be attributed to improved control of seizures, a reduction in concomitant antiepileptic drugs, and/or direct mood-stabilizing and behavior-enhancing properties independent of the antiseizure effects of the drug. The results of this study suggest that lamotrigine is an important treatment option in adolescents with mental retardation and comorbid epilepsy.     

Psychotherapy with persons who have mental retardation: an evaluation of effectiveness

Studies of psychotherapy with persons who have mental retardation were examined. Studies conducted during a 30-year period were rated by an expert consensus panel and classified with regard to the nature of the research and outcome and effectiveness domains. We conducted a meta-analysis on a small number of the studies and found a wide range of research designs, types of interventions, and participants. The evaluation also pointed to a moderate degree of change in outcome measures and moderate effectiveness in terms of benefit to clients with mental retardation. We conclude that psychotherapeutic interventions should be considered as part of overall treatment plans for persons with mental retardation.     

Benefit-cost analysis of supported competitive employment for persons with mental retardation

A review of the literature on unemployment rates among adults with mental retardation is presented and the societal impact of the number of adults with mental retardation who remain unemployed is discussed. The supported competitive employment model is presented as illustrative of a habilitation program allowing greater monetary returns to society than traditional adult service programs. A benefit-cost analysis of our supported competitive employment program, occurring during the period from 1978 to 1986, is presented from two perspectives: that of the consumer (i.e., the adult with severe disabilities) and that of the taxpayer. Results of the benefit-cost analysis indicate that supported competitive employment is a financially prosperous venture from both perspectives. That is, from the consumers' perspective, for every $1.00 relinquished in taxes, supplemental security income (SSI), and forgone workshop earnings, $1.97 was received in increased income; the net benefit per year was $3,894 consumer. From the taxpayers' perspective, for every $1.00 expended for the funding of supported competitive employment programs and in lost tax revenues realized by the provision of targeted jobs tax credits, $1.87 was accumulated in benefits; the net yearly benefit to the taxpayer was $4,063 per consumer. The authors conclude that supported competitive employment is a financially profitable venture for both consumers and taxpayers.     

Pharmacological outcomes in people with mental retardation and epilepsy

The aim of this study was to examine prospective outcomes in mentally retarded people with epilepsy seen for the first time during 1998 until the end of 2001. Two hundred and fourteen patients (120 men, 94 women, aged 11-70 years [median 34 years]) were referred over this 4-year period. Median duration of follow-up was 18 months (range, 13-36 months). Seventeen (8%) had nonepileptic attacks only, 10 of whom were being treated with antiepileptic drugs (AEDs). The remaining 197 (92%) patients had epilepsy, the majority (n=151, 77%) presenting with focal seizures. A total of 22 patients were started on AED treatment, with seizure freedom for at least a year being achieved in 10 (45%). AED manipulation was undertaken in a further 136 patients, resulting in 59 (43%) becoming seizure-free. No relationship was found between extent of mental retardation and seizure control. There was no deterioration in mean caregiver scores rating sleep, appetite, alertness, and behavior. These findings suggest that AED therapy can result in seizure freedom in more than 40% of mentally retarded people with epilepsy without producing unacceptable toxicity.     

Neuropsychological profiles of persons with mental retardation and dementia

This study examined the use of neuropsychological tests to assist in the differential diagnosis of dementia among persons with mental retardation. The author compared performances of persons with mental retardation and dementia (n = 10) to persons with mental retardation without dementia (n = 12). Participants were matched by IQ (mild or moderate mental retardation), age, presence of Down syndrome, and gender. In addition, all participants in the dementia group had corroborative medical tests (i.e., imaging, EEG, or high tau low AB42 protein testing) consistent with diagnosis of dementia. Test performance was compared on measures of attention and executive functions, language, memory and learning, and a dementia screening. Results from MANOVAs and nonparametric tests revealed significantly lower performance for persons with mental retardation and dementia in all areas assessed. Cut-off scores were also developed for the sample in order to maximize sensitivity and specificity for the test battery. Despite the small sample size, these findings suggest that there are significant measurable differences in several neurocognitive domains between the two groups.     

Sudden unexpected death in epilepsy in adults with mental retardation

The medical records of residents of a facility for persons with mental retardation from January 1, 1978, through December 31, 1997, were analyzed to identify incidence of sudden unexpected death for groups of 180 individuals with and 125 without comorbid epilepsy. Eighty deaths were identified, with 55 occurring in the epilepsy group and 25 in the nonepilepsy group. The rate of sudden unexpected death was 1.3 deaths per 1,000 patient years in the nonepilepsy group and 3.6 deaths per 1,000 patient years in the epilepsy group. The risk factors for sudden unexpected death in the epilepsy group were nonambulatory status and poorly controlled seizure disorder (increased seizure rate and increased number of antiepileptic drugs).     

Community care for people with mental retardation in the Netherlands

Parental access to community-based assistance was investigated in relation to occupational status and age of their child/teenager with an intellectual disability. Three age cohorts were included in a stratified sample of 70 households. Results indicated both status and age-related differences in access to assistance. While most upper-occupational-status parents had received help with “information” most lower-occupational-status parents had not. Age-related differences indicated that assistance was more likely to have been received by parents of 3–5 year olds than at any time by parents of older children or teenagers. These results are discussed in relation to differential access to parental support from community based services.     

Assessment of seizures and related symptomatology in persons with mental retardation

Seizures can be debilitating across a number of physical, social, occupational, and personal variables. Given the deficits in all of these areas frequently present in persons with mental retardation, effective assessment and subsequent treatment of seizures is a primary goal for individuals with both mental retardation and epilepsy. To thoroughly address the behavioral domains related to seizures in persons with mental retardation and epilepsy, areas of assessment should include seizure behavior, triggering stimuli, reinforcing consequences, and antiepileptic medication side effects. Assessment of these areas in this population often deviates from methods typically used with persons of normal intelligence. Specifically, direct behavioral observation and third-party report with structured interviews are the most viable and accessible means of assessment, and efforts to establish reliable and valid protocols have been successful in some areas. This article reviews this assessment methodology and discusses the extant issues in establishing and proliferating such approaches.     

Sleep pattern in children with intractable epilepsy and mental retardation

Four cases with intractable epilepsy and mental retardation (Epi + MR), four cases of mental retardation (MR), one case of mental retardation without epileptic seizures for the last several years (MR + (Epi] and two normal children were studied on their sleep pattern. Besides these, two cases of epilepsy (Epi) were examined. Awake time increased in the Epi + MR group. Slow wave sleep decreased markedly in the Epi + MR group. REM sleep decreased in the MR + (Epi) and Epi + MR groups. REM density was lowered in the following order: normal----Epi----MR----Epi + MR groups. The difference of sleep pattern among the normal, Epi and MR groups was not exhibited clearly, but severe sleep disturbances were shown in the Epi + MR group, implicating the severe brain dysfunction in the cortex and the brain stem.     

Facioscapulohumeral muscular dystrophy with severe mental retardation and epilepsy

We report here a case of a 20-year-old woman with facioscapulohumeral muscular dystrophy (FSHD). In this patient, the involvement of facial muscle had been present since early childhood, but obscured due to the complication of profound mental retardation. Epilepsy emerged at eight years of age. Symmetrical limb muscle weakness appeared at 15 years of age, which progressed such that she was wheelchair-bound at 18 years of age. An elevated serum creatine kinase, predominant involvement of hamstrings, scapular and abdominal muscles, as well as an impaired stapedial reflex at high tune, were compatible with the clinical features of FSHD. The diagnosis of 4q35-FSHD was confirmed by detection of a 10kb EcoRI fragment with a p13E-11 probe on a Southern blot. The intellectual disability in this patient was the most severe of all FSHD patients reported to date and has hindered a correct diagnosis. This entity should be included in the differential diagnoses for patients with muscular symptoms and accompanying mental retardation.