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Staff communication with people with intellectual disabilities: the impact of a work-based training programme.

Previous studies have identified changes that front-line service staff could usefully make to enhance their communications and those of their clients who have intellectual disabilities. These were incorporated into a training programme delivered in the workplace that involved a self-selected group of 24 experienced staff working either in small-scale residential settings and day centres. Analysis of video-recordings made before and after training showed that although most clients had become more active communicators (particularly when they were engaged in shared activities with staff), significant changes in staff behaviours as a whole were not observed. However increased responsiveness from staff did correlate significantly with increases in the client's communication acts. In addition, qualitative reports from staff and tutors pinpointed specific changes that staff had made. The difficulties of evaluating changes in staff-client communications are discussed and four features for training staff in communication are identified as essential; namely, it should be work-based, client focused, mentor-guided, and effective strategies documented and shared.

Adult↗

An investigation into diet treatment for adults with previously untreated phenylketonuria and severe intellectual disability.

There is evidence in the literature which suggests that adults with previously untreated phenylketonuria (PKU) benefit from a low phenylalanine diet. A prospective study providing a phenylalanine-restricted diet to five subjects with severe intellectual disability arising from untreated PKU is reported. Physical, social and behavioural measures were used to monitor the effects of the diet Four out of the five subjects derived considerable benefit. It is concluded that the restricted diet is worth trying in most individuals with previously untreated PKU, and that possible benefits are in the areas of concentration, alertness, mood, irritability and adaptive behaviour.

Adult↗

The natural history of dementia in ageing people with intellectual disability.

In a retrospective follow-up study over 11 years, the incidence and natural history of dementia was assessed in an institutionalized group of 144 people, aged 60 years and over, with mild to profound intellectual disability resulting from causes other than Down's syndrome. Age-related incidences, age at onset, duration and symptoms of dementia were comparable to those in the general population. The frequent and invalidating physical comorbidity (11/11) hampered the diagnostic process in this group. The high prevalence of episodes of delirium (9/11) and depressive symptoms (8/11) as the first manifestations of dementia and/or during dementia might reflect increased vulnerability as compared to other ageing people.

Aged↗

Obesity and intellectual disability.

While much of the industrialized world struggles for clues to the growing rise in obesity in their respective countries, researchers and service providers involved in understanding the health characteristics and health behaviors of persons with intellectual disability (ID) struggle with their own issues regarding the increased prevalence of obesity in this segment of the population. What is particularly alarming is that adults with ID residing in the United States in smaller, less supervised settings (e.g., group homes and family households) have a significantly higher rate of obesity compared to other countries and those living in larger and more supervised settings (e.g., institutions). These differences support the theory that the environment appears to exert a powerful influence on obesity in this population. Obesity presents a substantial threat to the livelihood of persons with ID and may have an effect on community participation, independent living, and healthy years of life. The lack of research on successful weight reduction strategies for obese persons with ID makes this an important and greatly needed area of research.

Australia↗

Self-assessment of relationships with peers in children with intellectual disability.

Interaction with peers is important for the development of children, but children with special needs may feel rejected by their peers. The present study examines self-assessment of relationships with peers by children with intellectual disability (ID; n = 20) and children from the general population (n = 20). All participants attended a regular primary school and were aged between 7 and 10.5 years; both sexes were represented in the samples. The Behavior Rating Profile was applied. The results of the children with ID on the "Student Rating Scale: Peers" did not show statistically significant differences from the results of children from general population, with both groups responding similarly to the self-perception scale. However, the sociometric results obtained from their peers clearly show that children with ID are not accepted by their classmates. Peers frequently and more often refuse to study, sit together in class or socialize after classes with children with ID than is the case for children without ID. Despite the high frequency of rejection, it is concluded that children with ID of younger primary school age have average confidence in their own abilities and in the success of their relationships with their peers. Further education among the children who reject them could have a negative impact on their self-esteem.

Child↗

The use of clozapine in adults with intellectual disability.

BACKGROUND: There are not many studies on the use of clozapine in patients with intellectual disability (ID). The authors describe a case series of patients treated with clozapine, drawn from a medium secure unit, a low secure assessment and treatment service and a community team in the London region. METHOD: A retrospective file-review of patients treated in these three settings during the time period March-June 2002 was performed (n = 24). Information was collected using a semistructured proforma. RESULTS: Of the 24 patients, 67% had schizophrenia, 17% had schizoaffective disorder and 8% had bipolar disorder. Patients had been unwell for a mean of 6 years and had been tried on a mean of four antipsychotics. The mean maximum dose of clozapine was 488 mg. The outcomes on the clinical global impression (CGI) scale showed 29% very much improved, 42% much improved, 21% minimally improved and 8% no change. 54% of the whole sample and 53% of those from the medium secure unit were discharged to homes in the community. The drug had to be stopped in four patients, of which three were because of neutropaenia. CONCLUSION: Clozapine appears to be safe and efficacious in many people with ID. Careful monitoring of side-effects is needed during therapy.

Adult↗

Measurement of perceived competence in Dutch children with mild intellectual disabilities.

BACKGROUND: Little research has been conducted on the perceived competence of children with mild intellectual disabilities (MID). One of the reasons for the marked absence of research appears to be the lack of reliable and clearly valid measurement instruments for this particular group of children. In the present study, it was examined whether a pictorial scale originally designed to measure perceived competence in typically developing children could successfully be used with children with MID. METHODS: The pictorial scale was administered to a group of 106 children with MID. The construct validity, reliability and stability of the scale were investigated. RESULTS: The results of the exploratory factor analyses and the confirmatory factor analyses supported the conceptual framework proposed. The construct validity was also supported by the pattern of intercorrelations between the subscales. The scale had adequate internal consistency and the stability analyses showed sufficient stability across a 4-month period. CONCLUSIONS: The findings show the psychometric properties of the pictorial scale to justify its use with children with MID.

Child↗

A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities.

BACKGROUND: Our knowledge and understanding of grief and its consequences have grown rapidly in recent years. There is a growing understanding that bereavement and loss represent a very significant event in the lives of people with intellectual disabilities (IDs). To date, there is no systematic review of the literature on the emotional, psychiatric and behavioural responses to bereavement in people with IDs. METHOD: This comprehensive literature review firstly examines the current opinion regarding the phenomenology of pathological grief in the general population. Research examining the ability of people with IDs to understand the concept of death is explored. In addition, a systematic review of the literature looking at the emotional, behavioural and psychiatric responses to bereavement is carried out. RESULTS: Bereavement and loss have distinct effects on the mental health, behaviour and emotional lives of people with IDs. Following a bereavement, symptoms of depression and anxiety increase, and general behaviour is altered. Traumatic grief symptoms have not yet been specifically studied and quantified. CONCLUSIONS: Particular difficulties are associated with researching the effects of bereavement on people with IDs. Further work needs to be done to more accurately describe the nature, time-scale, severity and frequency of the symptoms of traumatic grief in people with IDs, in order to improve assessment and treatment of affected individuals.

Affect↗

Obstacles in large-scale epidemiological assessment of sensory impairments in a Dutch population with intellectual disabilities.

BACKGROUND: A population-based epidemiological study on visual and hearing impairment was planned in a random sample of 2100 clients, drawn from a base population of 9012 users of Dutch residential and day-care intellectual disability (ID) services with the whole range of IDs. Stratification was applied for age 50 years and over and Down syndrome. Visual and hearing functions were assessed according to a standardized protocol, in cooperation with regular ophthalmologists and regional audiological centres. Anticipated obstacles in sample collection, random inclusion, informed consent, expertise of investigators, time and costs were eliminated by a careful preparation. However, inclusion and participation were incomplete. METHOD: In a descriptive retrospective design, we collected data from our study files on inclusion and participation as well as reasons for non-participation, to identify unanticipated obstacles for this kind of research. RESULTS: Consent was obtained for 1660 clients, and 1598 clients participated in the data collection (76% of intended sample of 2100). Inclusion and participation rates were especially lower in community-based care organizations, resulting in unintentional skewing of the sample towards more severe levels of ID. Complete and reliable data to diagnose visual impairment were obtained for 1358/1598 (85%) and to diagnose hearing impairment for 1237/1598 participants (77%). Unanticipated obstacles had to do with the quality of coordination within care organizations, with characteristics of screening methods, and with collaboration with the regular health care system. Assessments of visual function were more easy to organize than were those of hearing. Based on our current experience, practical recommendations are given for future multicentre research, especially in community-based settings.

Adolescent↗

Intellectual disabilities, depressive episode, diagnostic criteria and Diagnostic Criteria for Psychiatric Disorders for Use with Adults with Learning Disabilities/Mental Retardation (DC-LD).

BACKGROUND: Depressive episode is one of the most common types of psychiatric illness that occurs in adults with intellectual disabilities. METHODS: A comprehensive literature search was undertaken using Medline, PsychLIT and hand-searching of key journals. This paper reviews the evidence and integrates findings, to report how evidence relates to the development of the new Diagnostic Criteria for Psychiatric Disorders for Use with Adults with Learning Disabilities/Mental Retardation[DC-LD] depressive episode criteria. RESULTS: This area is better researched than many others, providing evidence on clinical symptomatology and presentation. In view of the lack of utility of standard diagnostic criteria developed for use with the general population, and set within the historical context, there are clearly identified reasons for the introduction of DC-LD. The depressive episode category has been informed by the evidence, and field trials showed excellent validity compared with the gold standard of learning disabilities psychiatric assessment. CONCLUSIONS: The DC-LD depressive episode category may improve clinical diagnosis and facilitate research. Its usefulness and limitations are yet to be determined in detail.

Adult↗

Mental health services and young people with intellectual disability: is it time to do better?

BACKGROUND: There is evidence that the mental health needs of children with disabilities are inadequate. The aim of the present study was to determine the extent of specialist health service use during adolescence by a group of individuals with intellectual disability (ID) and mental health problems. METHOD: The study population consisted of 80 young people with ID, who were examined in childhood and adolescence for psychiatric and behaviour disorder. These young people were interviewed again in early adult life for the presence of psychiatric and behaviour disorder. Evaluation questionnaires were used during the follow-up study to assess service use from adolescence. RESULTS: The key finding was that the great majority (64%) of subjects with persistent challenging behaviour from childhood into adult life and those with an established childhood psychiatric disorder received no specialist mental health care. CONCLUSIONS: The development of mental health services for this vulnerable group with complex psychiatric and behaviour disorders has been poor for a number of reasons, including lack of recognition at the primary care level and insufficient numbers of trained professionals within specialist services.

Adolescent↗

Sex differences in performance over 7 years on the Wechsler Intelligence Scale for Children--Revised among adults with intellectual disability.

BACKGROUND: The aim of this study was to explore changes related to sex differences on the Wechsler Intelligence Scale for Children - Revised (WISC-R) subtest performance over a 7-year interval in middle-aged adults with intellectual disability (ID). Cognitive sex differences have been extensively studied in the general population, but there are few reports concerning individuals with ID. Sex differences are of current relevance to actively debated issues such as cognitive changes during menopause and risk for Alzheimer's disease. Given that hormonal effects on cognition have been observed in the general population, particularly in areas such as visuospatial processing, and individuals with Down's syndrome (DS) have been reported to be hormonally and reproductively atypical, we analysed our data to allow for the possibility of an aetiology-specific profile of sex differences for these adults. METHODS: The WISC-R subtests were administered in a longitudinal study, as part of a more comprehensive test battery, at least twice within 7 years. Participants were 18 females with ID without DS [age at first test time (time 1): mean = 40.5; IQ: mean = 59.3], 10 males with ID without DS (age at time 1: mean = 42.4; IQ: mean = 59.4), 21 females with DS (age at time 1: mean = 37.9; IQ: mean = 51.6), and 21 males with DS (age at time 1: mean = 40.3; IQ: mean = 54.3). All participants were in the mild to moderate range of ID and were displaying no changes suggestive of early dementia. RESULTS: Females, regardless of aetiology of ID, exhibited a robust superiority on the coding subtest, which parallels the widely reported difference among adults in the general population. Additionally, there was a decline in overall performance during the 7-year study interval, particularly on the verbal subscale subtests, but there was no evidence of sex-differentiated decline. There were also marginal sex by aetiology interactions on the object assembly and block design subtests, suggesting that males with unspecified ID might perform better than their female peers, but among adults with DS, females might do better than males. CONCLUSIONS: This study supports the presence of cognitive sex differences in the population with ID as indicated by female superiority on the WISC-R coding subtest. Extending this observation to adults with ID has implications for explanations of female advantage on this task, which now have to account for its presence among individuals with a broader range of intellectual capabilities, more atypical developmental histories and more varied genotypes than previously considered. Trends towards sex by aetiology interactions on the two visuoconstructive subtests, while marginal, were sufficient to warrant continued consideration of the idea of a distinct profile of sex differences for adults with DS and to justify looking at the effects of sex separately within different aetiologies of ID.

Adult↗

Diagnosis of depression in people with severe/profound intellectual disability.

The Marston 30 Symptoms Checklist for detecting depression was used to determine whether or not the notion of 'depressive equivalents' can provide a few of the core characteristics necessary for the diagnosis of depressive disorders in people with severe/profound intellectual disability (ID). Diagnoses of major depression were made by a psychiatrist using the DSM-III-R criteria, combined with information from records, staff, team, parents, behaviour profiles, direct observations, mental status and follow-up visits. Twenty-two people with ID fulfilled the selection criteria from a larger sample of 150 patients who had been evaluated in 350 contact visits. Scores on the checklist for major depression for 15 subjects with severe/profound ID were similar to the core characteristics for diagnosis of major depression by DSM-III-R criteria. Evidence was found for the presence of depressive equivalents in the subjects, but these appeared to be secondary. The 15 participants with severe/profound ID were observed mostly during the depressive phase of bipolar I and bipolar II disorder, and major depression, recurrent type. Melancholic features were prominent in their presentation. Further studies of people with ID are needed to determine whether depressive equivalents are more prominent in cases of major depression with atypical features than in cases of major depression with melancholic features.

Adult↗

Mental disorder in adults with intellectual disability. 2: The rate of behaviour disorders among a community-based population aged between 16 and 64 years.

Despite the difficulty of defining behaviour disorder, most previous studies have reported a high rate of behaviour disorders in people with intellectual disability (ID). The aim of the present study was to establish the overall rate and types of behaviour disorders in a population-based sample of adults with ID. The other aim was to explore the possible risk factors that are associated with the overall rate as well as different types of behaviour disorders. One hundred and one adults with ID aged between 16 and 64 years were randomly selected from a sample of 246 such adults, i.e. those who were known to the Vale of Glamorgan Social Services Department in South Wales, UK. Thirteen behaviour disorders were rated according to the Disability Assessment Schedule. Background data on subjects were also collected, and were subsequently analysed to assess the relationship between different risk factors and behaviour disorders. Sixty-one subjects (60.4%) had at least one behaviour disorder of any severity or frequency. Twenty-three per cent of subjects showed aggression, 24% self-injurious behaviour, 36% temper tantrum, 26% overactivity, 29% screaming, 38% attention-seeking behaviour, 20% objectionable habits, 18% night-time disturbance and 12% of subjects showed destructiveness. Statistically significant associations were seen between the rate of overall behaviour disorder and the use of psychotropic medication, and between family and group home residence. The rate of aggression was significantly associated with the use of psychotropic medication. The rate of self-injurious behaviour was significantly associated with the severity of ID, female gender and poor communication abilities. The rate of temper tantrum was significantly associated with the use of psychotropic medication. Twenty-four subjects showed severe or frequent aggression, destructiveness, self-injury or temper tantrum, and 11 individuals showed real challenging behaviours. Severe behaviour problems were significantly associated with female gender, severity of ID, the presence of a history of epilepsy and attendance at day activities.

Adolescent↗

An assessment of intellectual disability among Aboriginal Australians.

BACKGROUND: The health and well-being of Indigenous people is a significant global problem, and Aboriginal Australians suffer from a considerably higher burden of disease and lower life expectancy than the non-Indigenous population. Intellectual disability (ID) can further compromise health, but there is little information that documents the prevalence of ID among indigenous populations. This study provides information on ID among the Aboriginal population of Western Australia. METHODS: The Disability Services Commission (DSC) of Western Australia has maintained a statewide database of people with ID since 1953. Data on people of Aboriginal descent were extracted from the DSC database and linked to two other state-based databases, the Hospital Morbidity Data System and the Deaths Registry, with additional linkage to the National Death Index. The linked data were used to assess the prevalence, survival patterns and causes of death in Aboriginal people with ID. RESULTS: Although comprising 3.5% of the population, Aboriginal Australians represented 7.4% of all people registered for ID services. The level of ID was assessed as borderline or mild in 40.7% of cases, moderate in 19.9%, severe or profound in 12.1%, but had not been specified in 27.2% cases. Median survival was 55.1 years for men and 64.0 years for women, with a mean age at death (n = 102) of 19.6 years. The leading causes of death were respiratory diseases, diseases of the circulatory system, and accidents. CONCLUSIONS: The study presents unique population summary data for ID in the Aboriginal community of Western Australia. To provide appropriate prevention and intervention strategies, there is an urgent need for more detailed information on the prevalence and patterns of ID.

Adolescent↗

Prevalence of dementia and impact on intellectual disability services.

In a statewide survey, dementia was found in 3% of adults age 40+; 6%, age 60+; and 12%, age 80+. Among adults with Down syndrome, the rates were 22% for adults age 40+ and 56% for adults age 60+. Observed onset occurred in the mid-60s (early 50s for those with Down syndrome). Alzheimer-type dementia was the most frequent diagnosis. With the occurrence of dementia expected to rise proportionately with the increase of longevity among adults with intellectual disabilities, care systems will have to raise the "index of suspicion" among staff and families, become "dementia capable," and improve their diagnostic and technical resources, as well as their care management supports designed to prolong the "aging in place" of adults affected by dementia.

Adult↗

Opportunity and the promotion of activity among adults with severe intellectual disability living in community residences: the impact of training staff in active support.

Active support, a package of procedures which includes activity planning, support planning and training on providing effective assistance, was introduced in five community residences serving 19 adults with severe intellectual disability following a multiple baseline design. The residents were directly observed to ascertain the level of assistance they received from staff and their engagement in activity. The introduction of active support increased the levels of assistance residents received, their engagement in domestic activities and their total engagement in activity. The intervention did not affect the level of social engagement. Across individuals, increases in assistance and engagement in activity were significantly and positively correlated. Both were significantly inversely related to resident adaptive behaviour. At baseline, staff gave more attention and assistance to people who were behaviourally more able. After the introduction of active support, receipt of attention was unrelated to adaptive behaviour and the behaviourally less able received more assistance. The disparity in activity between the more and less able was reduced. Gains were maintained in the majority of houses.

Activities of Daily Living↗