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PubMed2006

Age at death of people with an intellectual disability in Ireland.

This study examined the age at death of people with an intellectual disability in Ireland. Using data from the National Intellectual Disability Database, the average age at death of 1120 people who died between 1996 and 2001 was 45.68 years, with no difference in lifespan between men and women. A more severe level of intellectual disability predicted shorter lifespan. In general, those requiring lower levels of day-to-day support and supervision had a longer lifespan. Those living in the family home had the shortest lifespan while those in hospital residential environments had the longest lifespan. Those not attending any day service had a longer lifespan than those attending a range of day services. There were also differences in age at death across different health board regions. These findings are discussed in light of their implications for service planning.

Adolescent↗
PubMed1998

Use of antiepileptic drugs in the treatment of epilepsy in people with intellectual disability.

The main principles of antiepileptic drug treatment of epilepsy in patients with intellectual disability are basically the same as for other patients with epilepsy. However, some specific issues need to be taken into account These are primarily associated with the diagnostic difficulties of epilepsy in this population. In addition, a number of other relevant issues, including the degree and location of brain lesion, the nature of the underlying disease, the higher frequency of difficult-to-treat epilepsies, the additional intellectual impairment caused by inappropriate antiepileptic medication, or by frequent and prolonged seizures, the appropriate use of monotherapy versus rational polytherapy, and the use of broad-spectrum antiepileptic drugs will be discussed in the present paper. Although the goals of treatment are to keep the patient seizure-free and alert while preventing possible mental deterioration, we have to accept compromises between these primary goals in many cases. Some people with epilepsy and intellectual disability are very vulnerable to insidious neurotoxic effects; for example, sedative effects caused by phenobarbital, or cognitive and/or cerebellar dysfunction caused by long-term phenytoin, especially together with other drugs. Because of the adverse effects of phenobarbital and phenytoin, these drugs are no longer recommended as a first-choice drugs when long-term antiepileptic medication is required. In primary generalized tonic-clonic seizures, valproate, oxcarbazepine/carbamazepine and lamotrigine are recommended in this order of preference. The corresponding recommendations are: in typical absences, valproate, ethosuximide and lamotrigine; in atypical absences, valproate and lamotrigine; in juvenile myoclonic epilepsy, valproate, lamotrigine and clobazam; in infantile spasms vigabatrin, ACTH and valproate; in Lennox-Gastaut syndrome, valproate, lamotrigine and vigabatrin; in atonic seizures, valproate and lamotrigine; in simple and complex partial seizures with or without secondary generalization, oxcarbazepine/carbamazepine, valproate/ vigabatrin and lamotrigine; and in status epilepticus lorazepam, diazepam and clonazepam together with phenytoin or fosphenytoin. In cases of poor response to the monotherapy recommended above, the following combinations may be indicated: in primary generalized tonic-clonic epilepsy, valproate and oxcarbazepine/ carbamazepine, or valproate and lamotrigine; in typical absences, valproate and lamotrigine, or valproate and ethosuximide; in juvenile myolonic epilepsy, valproate and lamotrigine, or valproate and clonazepam; and in partial epilepsies, add to the monotherapy one of the following drugs, vigabatrin, lamotrigine, gabapentin, tiagabine, topiramate, zonisamide or clobazam. So far, the order of preference of these new drugs remains undetermined. More data are needed on the efficacy and adverse effects of the new drugs based on controlled studies on patients with intellectual disability and epilepsy.

Anticonvulsants↗
PubMed2001

Injury in young people with intellectual disability: descriptive epidemiology.

OBJECTIVES: To assess the public health importance of injury in a representative sample of young people with intellectual disability relative to the general population. SETTING: This study forms part of the Australian Child and Adolescent Development (ACAD) program examining emotional and behavioural problems in a cohort of young people with intellectual disability (IQ<70). The program has collected extensive biopsychosocial data from carers of subjects at two time intervals, 1990 (n = 579) and 1996 (n = 465). METHOD: Carer report of medically attended injury to subjects was collected for the first time during 1996 (age 5-29 years) and supplemented with medical record injury data from hospitals and general practitioners for 147 of the ACAD sample and 110 supplementary subjects. These data were compared with general population injury data to assess relative epidemiological differences. RESULTS: Annual injury mortality and morbidity rates were 150/100,000 and 55.6/1000 persons, with age standardised mortality and morbidity ratios of 8 and 2 respectively. Males and females had similar injury rates. The rate for injury hospitalisations was twice that of the general population. Falls were more common and transport injury and intentional injury less common causes of injury morbidity compared with general population. The patterns of cause, circumstances, and severity of injury in young people with intellectual disability have more similarities with younger children than with their same age group in the general population. CONCLUSION: This study should alert clinicians and others to the increased risk for injury and possible further handicap in this population. It is essential that injury prevention programs be implemented and evaluated for their effectiveness in reducing the substantial additional burden of suffering, care and cost resulting from injury to young people with intellectual disability.

Accidents↗
PubMed2004

Recurrence of Helicobacter pylori infection in adults with intellectual disability.

Although Helicobacter pylori infection is very common among particular groups of adults with intellectual disability, the rate of recurrence (reinfection or recrudescence) is unknown in this population. Thirty-six months after successful treatment of H. pylori, 28 adults with intellectual disability were retested using the faecal antigen test. Six (21%) of 28 patients tested positive, giving an approximate yearly recurrence rate of 7%, a rate considerably higher than that in the general population (<1%). It is recommended that adults with intellectual disability who have had successful treatment of H. pylori be retested for an interval of 3-5 years after treatment.

Adult↗
PubMed2005

Narrative ethics in nursing for persons with intellectual disabilities.

Both in The Netherlands and in Britain, practices of 'life story work' have emerged in nursing for persons with intellectual disabilities. The narrative approach to care and support may at the same time be considered as an attempt to compensate for the 'disabled authorship' of many persons with intellectual disabilities and as a sign of controversy with standard practices of diagnosis and treatment that tend to neglect the personal identities of both clients and care givers, their particular historical and relational contexts and their spiritual needs. This paper argues that narrative ethics not only offers an appropriate moral framework for practices of life story work, but that these practices are a narrative ethics in action. Starting with an account of the concept of 'life story work' as it has been introduced in nursing practices in the field of intellectual disability, the paper explains its relationship with key characteristics of narrative ethics. The teleological dimension in narrative ethics and in practices of life story work sparks off a dialectic process of understanding of the client and self-understanding of the care giver. It also invites a respect for life in its openness toward the future and presupposes an openness toward other possible versions of the life narrative. The phenomenological and hermeneutic-interpretative methodologies in narrative ethics aim at a 'sudden moment of intimacy' in relationships of nurses and clients. The 'epiphany' of this essential moment of recognition, insight and engagement cannot, however, be brought about by methodology.

Attitude of Health Personnel↗
PubMed1996

The psychiatric care of people with intellectual disabilities: the perceptions of consultant psychiatrists in Victoria.

OBJECTIVE: This study was undertaken to establish the perceptions of psychiatrists regarding the care of people of intellectual disabilities. METHOD: A 28-item self-administered questionnaire was developed, piloted and sent on two occasions to 467 psychiatrists who receive the newsletter of the Victorian branch of the Royal Australian and New Zealand College of Psychiatrists. The questionnaire incorporated a Likert scale to document the opinions of the respondents. RESULTS: A response rate of 51.1% was achieved. The respondents indicated that, in their opinion, people with intellectual disabilities receive a poor standard of care in the inpatient and community setting. To improve this situation, the following strategies were recommended: the development of improved liaison between services; improved training for all personnel who provide services to people with intellectual disabilities; the development of greater resources; and support for professionals working in the area. The study also indicates that there is a core group of very interested psychiatrists who are currently practising and that people with intellectual disabilities are accessing private psychiatric services. In addition, the results suggest that diagnostic overshadowing is not a major barrier to psychiatric assessment, and that disorders which were presumed to be commonly overlooked by doctors (such as depression) are in fact frequently being diagnosed. CONCLUSIONS: Despite some positive findings, the majority of psychiatrists who responded held major concerns about the situation of people with intellectual disabilities. To improve the care provided to these people, it is recommended that these concerns are addressed by the psychiatric profession and responsible government departments in conjunction with university departments of psychiatry.

Australia↗
PubMed2006

Psychosocial treatment malls for people with intellectual disabilities.

The provision of active treatment for people with intellectual disabilities has been seminal in the literature and in practice for a number of years. Active treatment has programmatic, financial, and legal ramifications for agencies and should be at the center of all appropriate treatment plans. The current work examines the use of psychosocial rehabilitation treatment malls to deliver active treatment to people with intellectual disabilities. The history, development, and implementation of these methods are discussed, with emphasis on services that are functional, meaningful, and portable. The importance of the therapeutic milieu is considered in context and discussed as the primary pathway to increased community integration. Finally, future directions of the treatment malls are considered.

Humans↗
PubMedDate not supplied

Pharmacological management of challenging behavior of individuals with intellectual disability.

In many Westernized countries, including Australia, concerns about the use of psychotropic drugs to manage the challenging behavior of individuals with intellectual disability have resulted in the development of legislative and procedural controls. Although these constraints may limit indiscriminate use, employing medication remains a common practice. This study examined information about 873 individuals (566 males, 307 females) who were the subjects of reports to the Intellectual Disability Review Panel in March 2000 concerning the use of chemical restraint. A high proportion of people with intellectual disability were reported to have received drugs for purposes of behavioral restraint. The range of drugs was extensive, although those from the antipsychotic class were the most frequently reported. Many individuals concurrently received more than one type of drug or more than one drug from the same drug class. More males than females and more older than younger individuals were administered medication. A relationship between gender and age was apparent, with younger males but older females dominating. The use of drugs to mange the behavior of people with intellectual disability may at times be warranted. However, it is important that the extent and type of drug use, as well as the characteristics of those who are medicated, be subject to ongoing scrutiny.

Adolescent↗
PubMed2006

A comparison of offenders with intellectual disability across three levels of security.

BACKGROUND: A number of authors have described, with disparate results, the prevalence of people with intellectual disability and their characteristics, in a range of offender cohorts defined by service use. These have included high security, a range of criminal justice services and community services. There is a need for research comparing cohorts of offenders with intellectual disabilities across different settings. AIM AND HYPOTHESIS: To conduct such a comparison and test the hypothesis that severity of characteristics measured will be highest in highest levels of residential security. METHOD: A clinical-record-based comparison a offenders with intellectual disability in high security (n = 73), medium/low security (n = 70), and a community service (n = 69). RESULTS: Groups were similar in age and tested IQ levels. Early psychiatric service contact had been more likely in the lower security groups. In line with the hypothesis, more complex presentations, in particular comorbid personality disorder, was more likely in the highest security group. Both fatal and non-fatal interpersonal violence convictions were significantly related to group, with more in the high security group sustaining a conviction both at the index offence and prior to that. Over 50% of all groups had at least one conviction for a sexual offence. A regression model accounting for 78% of the variance was made up largely of disposal variables (Mental Health Act status and probation) and indications of antisocial traits (criminal damage, lifetime conviction for murder and ICD-10 personality disorder classification). CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: The authors show that context of sampling affects most relationships between intellectual disability (ID) and offending when the methods for measuring ID are held constant. The results also present several questions on the relationship between risk, services available in an area and referral to higher security.

Adult↗
PubMed1997

Gastroesophageal reflux disease in intellectually disabled individuals: leads for diagnosis and the effect of omeprazole therapy.

OBJECTIVES: The therapeutic approach to gastroesophageal reflux disease (GERD) in intellectually disabled individuals has not been studied extensively. So far, only low response rates to medical and surgical therapy of GERD have been reported. However, the efficacy of proton pump inhibitors, to date the most effective medical therapy for GERD, has never been evaluated in this population. Our purpose, therefore, was to study the effect of omeprazole on healing and symptom relief in the intellectually disabled. METHODS: The treatment scheme was as follows: omeprazole 40 mg was given once daily (o.d.) as a healing dose for 3 months, and omeprazole 20 mg o.d. was given as a maintenance dose for another 3 months, to intellectually disabled subjects with endoscopically proven esophagitis, grades I-IV, according to Savary-Miller classification. After 3 and 6 months, the result of this treatment was evaluated by symptom scoring and/or endoscopy. In case of relapse, the dose was increased. RESULTS: At the first endoscopy, 40 of 107 patients (37%) had grade I, 36 (34%) grade II, 18 (17%) grade III, and 13 (12%) grade IV esophagitis. In 92 of 104 patients (88%), the treatment scheme was effective in healing the esophagitis and keeping patients in remission, independent of the severity of esophagitis. In 11 of 104 (11%) patients, a symptomatic relapse was observed after the dose was decreased to 20 mg o.d. However, all of these patients became symptom free again after the dose was increased to 40 mg o.d., and all were healed endoscopically at the end of the study. One (1%) patient needed omeprazole 60 mg o.d. for healing, but in this patient, no relapse was seen while on a maintenance dose of omeprazole 40 mg o.d. Marked improvement of persistent vomiting, hematemesis, regurgitation, food refusal, iron deficiency anemia, and depressive symptoms was seen at the end of the study. CONCLUSIONS: This study indicates that omeprazole is highly effective for all grades of esophagitis in the intellectually disabled. The dose needed to maintain them in remission can be titrated according to the reflux symptoms.

Adolescent↗
PubMed2006

Mood disorders in intellectual disability.

PURPOSE OF REVIEW: This article examines reviews and research on the diagnosis and treatment of mood disorders in people with intellectual disability published from September 2004 to December 2005. RECENT FINDINGS: Patients with intellectual disability have limitations in verbal ability, and with increasing levels of disability may have an atypical clinical presentation. Thus, methods to diagnose mood disorders were a major research focus. Informant-rating scales and two self-report instruments provided data on thought patterns, aberrant behavior, appetite, and suicidality. Behavioral symptoms such as aggression were frequently associated with mood disorders. Pharmacotherapy and electroconvulsive therapy were found to be effective treatments. Mood disorders were frequently identified in people with intellectual disability, although suicide was still quite rare. SUMMARY: Patients with milder levels of disability can use self-report measures and can be diagnosed using standard criteria with little modification. For those with more severe disability, diagnosis is challenging and often requires the use of residual categories. Atypical clinical presentation, including maladaptive behaviors, lent support for 'behavioral equivalent' substitutes of standard criteria. Typical pharmacological agents were effective for depression and electroconvulsive therapy for treatment-resistant bipolar disorder.

Aggression↗
PubMed2003

Prevalence of intellectual disability in Western Australia.

Record linkage of multiple sources was used to ascertain children with intellectual disability born in Western Australia between 1983 and 1992. The prevalence was 14.3 per 1000, 10.6 per 1000 for children with mild or moderate and 1.4 per 1000 for those with a severe level of intellectual disability. Prevalence was greater in males (prevalence ratio 1.6) and in children of Aboriginal mothers (prevalence ratio 2.3). Although prevalence of intellectual disability has been found to vary according to study location, method of ascertainment and criteria used, these estimates are similar to estimates from several recent studies.

Adolescent↗
PubMed2005

Intellectual disability and parenthood.

Parenthood in persons with intellectual disability (ID) is an issue of concern for the family, guardians, and professionals as there are many sentiments and problems involved: financial, technical, medical, legal, and above all moral. People with intellectual, developmental, or other disabilities have feelings, want relationships, and are able to have children also. The attitude of society has changed through time from the early eugenic concern with heredity and fertility, to a focus on the risk to the children due to parental neglect or abuse, to acceptance and a search for solutions to parental training and support. This change can be seen as a result of a shift from institutional care to community care and normalization. This paper reviews available research, prevalence, service issues, experience from around the world, and relates to the situation in Israel. Jewish Law has been very progressive regarding the possibility of marriage between persons with ID (in contrast to American Law where historically this right has been denied, until recently). Recent research has shown that, in the case of such a union resulting in children, although they require some supervision, family, friends, and social welfare agencies have scrutinized these families so much they are in constant fear of their child being taken away. There is little information on the number of such cases and an overall dearth of information on the effects on the children, although one recent study from the U.K. has shown a varied picture of resilience and a close, warm relationship later on with the family and especially the mother.

Adolescent↗
PubMed1997

Emotion recognition as a function of social competence and depressed mood in individuals with intellectual disability.

The present study was designed to test whether social competence and mood were predictive of the performance by adults with mild or moderate intellectual disability on a matching-to-sample task using facially expressed emotions as stimuli. Thirty-eight subjects were assigned to either a depressed mood group or a non-depressed mood group based on their scores on the two depression sub-scales of the Reiss Screen for Maladaptive Behavior. The groups were matched on sex, age and level of intellectual disability. Each group consisted of 10 women and nine men; 12 participants in each group had mild and seven had moderate intellectual disability, respectively. Social competence was assessed with the Social Performance Survey Schedule (SPSS). Performance on the matching-to-sample task correlated positively with the subjects' level of intellectual disability, their mood scores and the scores on the Appropriate Skills sub-scale of the SPSS. The implications of these findings for social skills training programmes and limitations of this study are discussed.

Adult↗
PubMedDate not supplied

Lifestyle related risk factors for poor health in residential settings for people with intellectual disabilities.

Little information is available on the prevalence and determinants of lifestyle related risk factors for poor health (obesity, poor diet, physical inactivity, smoking and alcohol abuse) among people with intellectual disabilities. This study reports the prevalence of these risk factors for 500 people with intellectual disabilities living in different forms of residential provision in the UK. Variables which predict the presence of these risk factors are also identified. While levels of smoking and alcohol abuse were low, the prevalence of poor diet, obesity in women and physical inactivity was high. Analyses of predictors of risk factors present a mixed pattern with regard to participant and service characteristics, with greater ability and less restrictive residential settings being associated with poor diet, smoking and obesity, but physical inactivity being associated with lower ability and more restrictive settings. It is argued that increasing levels of moderate or vigorous physical activity among people with intellectual disabilities would be the single most effective way of improving the health of people with intellectual disabilities.

Adult↗
PubMed2006

Alcohol-related problems in adolescents and adults with intellectual disabilities.

PURPOSE OF REVIEW: Alcohol is widely available and one of the most commonly used psychoactive substances. This review examined the recent literature for empirical research addressing the cause, prevalence and treatment of alcohol-related problems in adolescents and adults with intellectual disabilities. RECENT FINDINGS: Adequate controlled research has not been conducted, and most of the studies were epidemiological and inconclusive. Despite the high variation in the reported prevalence in alcohol use and misuse rates, most published studies document that adolescents and adults with intellectual disabilities consume alcohol at substantially lower rates than the general population. Few treatment interventions have been reported, but limitations in the study design outline the emphasis for future research. SUMMARY: Alcohol misuse affects the physical and mental health of people with intellectual disabilities, leading to behavioural and social difficulties. Assessment and treatment of alcohol-related problems pose ethical considerations. Uncertainty surrounds the ability of alcohol services, and services for individuals with intellectual disabilities respectfully, to meet the needs of this population. Modification of existing treatment approaches, further staff training and development of liaison approach between alcohol services and services for people with intellectual disabilities need further evaluation of their effectiveness.

Adolescent↗
PubMed2007

What symptoms predict the diagnosis of mania in persons with severe/profound intellectual disability in clinical practice?

BACKGROUND: While researchers have attempted to address the difficulties of diagnosing affective disorders in the intellectually disabled population, diagnosing bipolar disorder in an individual with severe intellectual disability (ID) remains a challenge. The aim of this study was to identify what symptoms can predict a diagnosis of mania in the intellectually disabled population. METHODS: Three groups of persons with ID participated in this study: (1) individuals with a bipolar diagnosis who were currently manic; (2) individuals with an Axis I diagnosis other than bipolar disorder; and (3) individuals without an Axis I diagnosis. Two recognized measures of mania (i.e. Diagnostic Assessment for the Severely Handicapped-Revised and Parent Version of Young Mania Rating Scale) were used to evaluate symptoms of mania. A logistical regression procedure was conducted on mania items to identify which items correctly identify persons with ID who were currently manic. RESULTS: Psychomotor agitation, decreased sleep, changes in mood and aggression were significantly related to the diagnosis of mania. Further, psychomotor agitation and disturbed sleep were significant predictors of a diagnosis of mania. CONCLUSIONS: Problems of sleep and psychomotor agitation should alert clinicians that further assessment of bipolar symptomatology is warranted. Focusing on observable behaviours based on Diagnostic and Statistical Manual of Mental Disorder-IV criteria can be useful in formulating a diagnosis of bipolar disorder in persons with ID.

Adult↗