Psychosis and adults with intellectual disabilities

Objective To determine the point prevalence, incidence, and remission over a 2-year period of psychosis in adults with intellectual disabilities, and to investigate demographic and clinical factors hypothesised to be associated with psychosis. Method A population-based cohort of adults with intellectual disabilities (n = 1,023) was longitudinally studied. Comprehensive face-to-face mental health assessments to detect psychosis, plus review of family physician, psychiatric, and psychology case notes were undertaken at two time points, 2 years apart. Results Point prevalence is 2.6% (95% CI = 1.8–3.8%) to 4.4% (95% CI = 3.2–5.8%), dependant upon the diagnostic criteria employed. Two-year incidence is 1.4% (95% CI = 0.6–2.6), and for first episode is 0.5% (95% CI = 0.1–1.3). Compared with the general population, the standardised incidence ratio for first episode psychosis is 10.0 (95% CI = 2.1–29.3). Full remission after 2 years is 14.3%. Visual impairment, previous long-stay hospital residence, smoking, and not having epilepsy were independently associated with psychosis, whereas other factors relevant to the general population were not. Conclusions The study of psychosis in persons with intellectual disabilities benefits the population with intellectual disabilities, and advances the understanding of psychosis for the general population. Mental health professionals need adequate knowledge in order to address the high rates of psychosis in this population.     

Concept of death and perceptions of bereavement in adults with intellectual disabilities

Background Bereavement is potentially a time of disruption and emotional distress. For individuals with an intellectual disability (ID), a limited understanding of the concept of death may exacerbate this distress. The aim of the present study was to investigate how individuals with ID understand and explain death and make sense of life without the deceased. Method Thirty‐four people with ID were interviewed using simple vignettes describing death‐related incidents. Participants were asked about the causes of death, the status of the body after death and whether all living things die. In addition, participants were asked about reactions to death and for their views on post‐bereavement support. Results Nearly one quarter of participants had a full understanding and over two‐thirds a partial understanding of the concept of death. Death comprehension was positively correlated with cognitive ability and adaptive functioning. While cause of death was predominantly associated with illness and old age, participants viewed death as final and understood that all living things die. The role of religious beliefs was also found to be important for many participants. Conclusions The results support earlier findings that suggest people with ID have only a partial understanding of the concept of death leaving them vulnerable to factually incorrect thoughts. The study highlights the considerable scope for making sense of death using religious and spiritual themes and emphasises the need for teaching individuals biological explanations of the life cycle. The results also provide some insight into the views of individuals with ID for carers involved in providing post‐bereavement support.     

Relationship between theory of mind and language ability in children and adolescents with intellectual disability

Background The present study was designed to evaluate the validity of the false belief task as a measure of theory of mind development in individuals with intellectual disability (ID). In most if it variants, the false belief task is linguistically demanding. This raises the possibility that the finding that individuals with ID do poorly on it might reflect language difficulties rather than theory of mind difficulties. Complicating matters further, however, is the fact that there are theoretical reasons to suppose that there might be a relationship between some dimensions of language ability and theory of mind development in individuals with ID (as well as in other populations). Method In the present study, children and adolescents with ID and typically developing (non‐verbal) mental age matches completed a standard false belief task and several tasks designed to measure language ability. Results We reasoned that a pattern in which false belief performance was correlated with all measures of language ability would reflect an artefactual relationship, whereas a more highly circumscribed, theoretically sensible pattern of correlations that was similar across both groups would support the validity of the false belief task. Conclusions The results indicated that for individuals with ID who have limited narrative language skills, those limitations contribute substantially to their failure on the false belief task. For individuals with ID who have more highly developed narrative language skills (about 40% of the sample tested), however, the false belief task may provide a valid measure of their progress towards acquiring an adequate theory of mind. This latter conclusion was suggested by the fact screening out individuals who failed to meet linguistic and cognitive prerequisites for dealing with the performance demands of the false belief task yielded non‐significant correlations between false belief performance and the language measures for both the group with ID and the typically developing comparison group.     

Predictors of work participation of young adults with mild intellectual disabilities

Individuals with intellectual disabilities (ID) are three to four times less often employed compared to their non-disabled peers. Evidence for factors associated with work participation of young adults with ID is limited. Furthermore, studies on predictors for sustainable work participation among young adults with ID is lacking altogether. Therefore, the aim of this study was to investigate which factors predict finding as well as maintaining employment of young adults with mild ID. We obtained data on 735 young adults with mild ID, aged 15–27 years, applying for a disability benefit. The follow-up period ranged from 1.25 to 2.75 years. Motivation, expectations regarding future work level and living situation predicted finding work as well as maintaining employment for at least 6 months. In this study, especially personal factors were influential in predicting work outcome and may be suitable factors to include in interventions.     

Sexual relationships in adults with intellectual disabilities: understanding the law

Introduction Adults with intellectual disabilities (IDs) are known to be very vulnerable to sexual abuse. This may result partly from their lack of sexual knowledge and their powerless position in society. It could also be exacerbated by an ignorance of the law. This study investigates their understanding of the law relating to sexuality. Method Understanding of the law regarding sexual relationships, consent and abuse was assessed in 60 adults with IDs (mean age 37.6 years) and 60 young people aged 16–18 years (deemed in law capable of consenting to a sexual relationship). Questions were wide ranging, including general laws around sexuality and abuse, as well as the law relating to sexual relationships and ID. Results There were significant differences between the two groups: adults with IDs had a very limited understanding of the general laws relating to sexuality (e.g. age of consent, incest, abuse), as well as the law relating to sexuality and IDs (e.g. whether they could have sexual relationships, whether they were allowed to marry, what protection they should expect from the law). Young people without disabilities showed a better understanding, both for general laws and for those relating specifically to adults with IDs. Conclusions These findings show that there is a need to educate people with IDs about the laws relating to sexuality. It is important for people to understand the law and, given the high rates of sexual abuse perpetrated against people with ID, it is essential for them to benefit from the protection the law affords. The new law in England (Sexual Offences Act 2003) post‐dated this study. It will be interesting to see whether the new legislation is easier for people with and without disabilities to understand.     

The use of contraception by women with intellectual disabilities

Background Worldwide, contraception is frequently used by women for the prevention of conception, to regulate or postpone menstrual bleeding. The study aims to determine the use (number and method) of contraception by women with intellectual disabilities (ID), the indications, sources of referrals and relations with level of ID and age of the women concerned. Methods The study group consisted of 234 women aged between 15 and 59 years and residing at a Dutch service provider for persons with ID. Data were obtained via the pharmacy database, attending physicians and individual medical files. Results Nearly one half (48%, n = 112) of the 234 residential women used some method of contraception: 87 (78%) took pharmacological contraceptive methods, 23 (20%) underwent surgical contraception and 2 (2%) both. Main reasons for contraception were problems with menstruation, behaviour and/or prevention of pregnancy. Requests for contraception were initiated mainly by physicians and parents. Differences between users of different contraceptives with regard to age and level of ID were not statistically significant. Conclusions Further studies should focus on the development and implementation of adequate health promotion materials on this subject.     

Neuropsychological predictors of everyday functioning in adults with intellectual disabilities

Background Very little is known about the neuropsychological correlates of adaptive functioning in people with intellectual disabilities (ID). This study examined whether specific cognitive deficits and demographic variables predicted everyday functioning in adults with ID. Method People with ID (n = 101; ages 19–41 years; mean education = 11 years; 34% women; 54% competitively employed; 41% with mild ID) completed a comprehensive neuropsychological battery grouped into four cognitive domains: processing speed, verbal memory and comprehension, visual perception/constructive function, and executive function. In addition, parents completed an 89‐item rating scale developed to assess a wide range of independent living skills. Results Confirmatory factor analysis results confirmed a correlated four‐factor model of cognitive function and a unidimensional model of everyday functioning. Furthermore, structural equation modelling results supported the predictive relationship of verbal memory/comprehension and employment status (standardized regression coefficients 0.45, 0.22, P ≤ 0.01 for each) to measures of everyday functioning. The two variables together explained 35% of the variance in everyday functioning. Conclusions Both general cognitive dysfunction and specific verbal memory and comprehension deficit impair daily functions in people with ID. These findings have implications for predictive models of adaptive functioning, and for cognitive rehabilitation and deficit compensation strategies for this group.     

Neighbourhood deprivation, health inequalities and service access by adults with intellectual disabilities: a cross-sectional study

Background Adults with intellectual disabilities (IDs) experience health inequalities and are more likely to live in deprived areas. The aim of this study was to determine whether the extent of deprivation of the area a person lives in affects their access to services, hence contributing to health inequalities. Method A cross‐sectional study design was used. Interviews were conducted with all adults with IDs within a defined location (n = 1023), and their medical records were reviewed. The extent of area deprivation was defined by postcode, using Carstairs scores. Results Area deprivation did not influence access to social supports, daytime primary health‐care services or hospital admissions, but people in more deprived areas made less use of secondary outpatient health care [first contacts (P = 0.0007); follow‐ups (P = 0.0002)], and more use of accident and emergency care (P = 0.02). Women in more deprived areas were more likely to have had a cervical smear; there was little association with other health promotion uptake. Area deprivation was not associated with access to paid employment, daytime occupation, nor respite care. These results were essentially unchanged after adjusting for type of accommodation and level of ability. Conclusions Deprivation may not contribute to health inequality in the population with IDs in the same way as in the general population. Focusing health promotion initiatives within areas of greatest deprivation would be predicted to introduce a further access inequality.     

How staff pursue questions to adults with intellectual disabilities

Background When support staff use questions to instruct, advise or guide adults with intellectual disabilities (ID), or to solicit information from them, the interaction does not always proceed smoothly, particularly when replies are ambiguous, absent or not obviously relevant. That can lead to interactional trouble and dissatisfaction, or worse. Methods We report on the ways in which staff members transform their questions over a series of conversational turns in order to solicit an adequate reply, and thereby to fulfil the interactional goal of the question. Our data come from approximately 30 h of recordings of natural conversation between staff members and adults with ID in two residential and one outdoor activities settings. Results We identify seven practices by which staff attempt to resolve the dilemma between undue direction and premature closure. These include: expansion of the original question, simplifying its format, changing its content in various ways and realising its alternatives in physical form. Conclusions We highlight strategies which produce answers satisfactory to both parties, and improve the quality of interaction between staff and people with ID.     

Screening for psychiatric symptoms: PAS-ADD Checklist norms for adults with intellectual disabilities

BACKGROUND: The Psychiatric Assessment Schedule for Adults with Developmental Disabilities Checklist (PAS-ADD Checklist) is a screening instrument designed to help carers recognize likely mental health problems in people with intellectual disabilities (ID). To date there are no published PAS-ADD Checklist data on a large nonpsychiatric population of adults with ID, an important step towards developing norms for comparative purposes. METHODS: Informants who had known participants for a median 24 months completed the PAS-ADD Checklist on 1155 adults with ID living in community, residential care and hospital settings in a county district in the North-east of England. RESULTS: Normative data were obtained for the PAS-ADD Checklist for the study population with reference to gender, age, and type of residence. The overall prevalence of mental health problems was 20.1%, and the rates for affective/neurotic, organic and psychotic disorders were 14%, 3.9%, and 10.2%, respectively. Significant differences in the rates for particular disorders were found across gender, age and, residence type. CONCLUSIONS: The rates of mental disorders found in the study population were consistent with previous studies of general populations of people with ID using over-inclusive screening instruments. The PAS-ADD Checklist appears to be an easy-to-use and sensitive tool for identifying mental health cases in ID populations, but further investigation is required concerning the specificity of the instrument.     

Feasibility and reliability of body composition measurements in adults with severe intellectual and sensory disabilities

Background   Anthropometric measurements are widely used to reliably quantify body composition and to estimate risks of overweight in healthy subjects and in patients. However, information about the reliability of anthropometric measurements in subjects with severe intellectual and sensory disabilities is lacking.
Objective   The purpose of this study was to determine the feasibility and the test–retest reliability of body composition measures in subjects with severe intellectual and sensory disabilities.
Method   The study population consisted of 45 subjects with severe intellectual and sensory disabilities. Body mass index, waist circumference, skin folds and tibia length were measured. Reliability was assessed by Wilcoxon signed rank test, limits of agreement (LOA) and intraclass correlation coefficients. The outcomes were compared with values provided by the World Health Organization.
Results   There were no significant differences between test and retest ( P  < 0.05). For the skinfold measurements, however, the LOA was insufficient. Intraclass correlation coefficients for all variables, except skinfold measurements, were 0.90 or above.
Conclusion   Test–retest reliability and feasibility for all measurements are acceptable in subjects with severe intellectual and sensory disabilities. Skinfold measurements, however, could not be reliably performed in these subjects. Measuring tibia length and using the determined formula to calculate body height from tibia length is a reliable alternative for measuring body height. Although measuring the body height of subjects with severe disabilities was feasible, measuring tibia length was more feasible.     

The relationship between theory of mind and insight in obsessive-compulsive disorder

Background: It is known that obsessive-compulsive disorder (OCD) patients with poor insight display more severe neuropsychological impairments than other patients with OCD. There are limited studies of OCD and theory of mind (ToM).

Aim: To investigate ToM skills in patients with OCD and the relationship between insight and ToM skills by comparing OCD patients with good and poor insight.

Methods: Eighty patients with OCD and 80 healthy controls completed the structured clinical interview for DSM-IV axis I disorders, the Yale Brown Obsessive-Compulsive Scale, the Beck Anxiety and Beck Depression Inventories, and the Brown Assessment of Beliefs Scale. To assess ToM skills, first- and second-order false-belief tests, a hinting test, a faux pas test, a reading the mind in the eyes test, and a double-bluff test were administered.

Results: Patients with OCD had poorer ToM abilities than healthy controls. All ToM scores were significantly lower in the poor insight group than in the good insight group (p?p?Conclusions: The finding of significantly lower ToM skills in OCD with poor insight than in OCD with good insight may contribute to the idea of OCD with poor insight being a subtype with different clinical and neuropsychological characteristics.     

Services in the community for adults with psychosis and intellectual disabilities: a Delphi consultation of professionals' views

Background   There remains a severe lack of evidence on the effectiveness of community services for adults with psychosis and intellectual disabilities (ID). There has been little consensus even of what services should provide for this service user group.
Method   A consultation of multidisciplinary professionals was carried out by using a three-round Delphi exercise. Participants were recruited nationally. They rated their views on the importance of 139 items for the care of adults with psychosis and ID. These included 85 routine service components, 23 service user characteristics for those needing a more intensive service and 31 more intensive service components.
Results   Forty-nine out of 52 participants completed all three rounds of the Delphi consultation. Consensus of opinion (≥80% agreement as essential) was obtained on 18 of the routine service components, nine of the service user characteristics and five of the more intensive service components. The routine service components considered essential can be broadly considered under a need for a focused approach on the service user and their illness (e.g. monitoring of mental state) and the added need to work within the wider context of the service user with psychosis and ID (e.g. access to social, leisure or occupational activities). Five of the more intensive service components were considered to be essential (e.g. can react to a crisis that day). However, the routine service components considered essential already contained many components such as out-of-hours support and crisis plans also relevant to more intensive services.
Conclusion   These findings can be used to develop further the evidence base for services in the community for this user group and to assist in the preparation of much needed service evaluation studies.     

Enhancing primary health care services for adults with intellectual disabilities

Background Primary health care teams have an important part to play in addressing the health inequalities and high levels of unmet health needs experienced by people with intellectual disabilities (ID). Practice nurses have an expanding role within primary health care teams. However, no previous studies have measured their attitudes, knowledge, training needs, and self-efficacy in their work with people with ID. Methods All practice nurses working in a defined area were identified. A purpose-designed questionnaire to measure nurse attitudes, knowledge, training needs and self-efficacy was developed and piloted. All practice nurses were then invited to participate. Data from completed questionnaires were entered onto PC and analysed. Results Of a total of 292 practice nurses 201 (69%) participated. Whilst 89% (n = 179) of participants reported having infrequent contact, 25% (n = 50) reported a growing workload with people with ID. Only 8% (n = 16) had ever received any training in communicating with people with ID. A knowledge gap regarding the health needs of people with ID was identified. Eighty-six per cent reported having experienced specific difficulties during previous appointments, and only 23% thought they had sufficient case note information at appointments, but 68% did not modify the duration of their appointments with people with ID. Conversely, responses demonstrated that practice nurses have a high level of experience and qualification in general nursing, have positive attitudes to working with people with ID, and high self-efficacy scores were identified for work with people with ID. The practice nurses viewed ID to be a high priority area for future training. Conclusions Primary health care teams have a key role in tackling the unmet health needs of people with ID. Whilst this project has identified factors that may impact on the accessibility of services, it has also identified practice nurses as having positive attitudes and high self-efficacy scores in their work with people with ID. This indicates that they should be targeted for specific training in this area, which may make an important contribution in enhancing future accessibility of primary health care services for people with ID.