D. Mantry

Adults with intellectual disabilities : prevalence, incidence and remission of aggressive behaviour and related factors

INTRODUCTION Aggressive behaviours can be disabling for adults with intellectual disabilities (ID), with negative consequences for the adult, their family and paid carers. It is surprising how little research has been conducted into the epidemiology of these needs, given the impact they can have. This study investigates point prevalence, 2-year incidence and 2-year remission rates for aggressive behaviour (physically aggressive, destructive and verbally aggressive), and it investigates which factors are independently associated with aggressive behaviour. METHODS All adults with ID - within a geographically defined area of Scotland, UK - were recruited to a longitudinal cohort. At baseline, assessments were undertaken of demography, lifestyle, supports, development, problem behaviours, disabilities and physical and mental health. These were repeated for a 2-year period. RESULTS At baseline, the participation rate was 1023 (65.5%). After 2 years, the cohort retention was 651 adults. The point prevalence of Diagnostic Criteria for Psychiatric Disorders for Use with Adults with Learning Disabilities/Mental Retardation (DC-LD) aggressive behaviour was 9.8% (95% confidence interval = 8.0-11.8%), 2-year incidence was 1.8%, and 2-year remission rate from all types of aggressive behaviour meeting DC-LD criteria was 27.7%. The factors independently associated with aggressive behaviours were lower ability, female gender, not living with a family carer, not having Down syndrome, having attention-deficit hyperactivity disorder and having urinary incontinence. Incidence of aggressive behaviour meeting DC-LD criteria in adult life is similar to that for each of psychotic, anxiety and organic disorders. CONCLUSIONS Aggressive behaviour is common among adults with ID, but contrary to previous suggestions, more than a quarter remit within the short to medium term. This is important knowledge for professionals as well as the person and her/his family and paid carers. There is much yet to learn about the mechanisms underpinning aetiology and maintenance of aggressive behaviour in this population, and exploratory epidemiological investigations such as this have a role to play in progressing research towards further hypothesis testing and trials to influence clinical practice, service development and policy.

Adults with intellectual disabilities: prevalence, incidence and remission of self-injurious behaviour, and related factors

BACKGROUND Self-injurious behaviour (SIB) is a serious condition, with implications for the person, their family and financial costs to the state providing care. The previously reported prevalence of SIB has ranged from 1.7% to 41%, or 1.7%-23.7% in community studies. There has been little study of remission rate, and incidence has not previously been reported. SIB has been reported to be individually associated with lower ability, autism and communication impairments, but given the inter-relationships between these three factors, it is not known whether they are independently associated with SIB. This study investigates the point prevalence, incidence and remission rates of SIB among the adult population with intellectual disabilities (ID), and explores which factors are independently associated with SIB. METHOD A prospective cohort study design was used in a general community setting. The participants were all adults (16 years and over) with ID in a defined geographical area. Individual assessments were conducted with all participants. RESULTS The point prevalence of SIB (as defined by DC-LD) was 4.9%, the two-year incidence was 0.6%, and two-year remission rate was 38.2%. Independently related to SIB were: lower ability level, not living with a family carer, having attention deficit hyperactivity disorder, visual impairment, and not having Down syndrome. Other factors, including communication impairment, autism, and level of deprivation of the area resided within, were not related. CONCLUSIONS SIB is not as enduring and persistent as previously thought; a significant proportion gains remission in this time period. This should provide hope for families, paid carers and professionals, and reduce therapeutic nihilism. Our study is a first tentative step towards identifying risk-markers for SIB, and developing aetiological hypotheses for subsequent testing. The extent to which SIB may be a relapsing-remitting (episodic) condition requires further investigation, so does further hypothesis-based investigation of factors that might be predictive of incidence of, and remission from, SIB.

The Prevalence and Incidence of Mental Ill-Health in Adults with Down Syndrome.

BACKGROUND While there is considerable literature on adults with Down syndrome who have dementia, there is little published on the epidemiology of other types of mental ill-health in this population. METHOD Longitudinal cohort study of adults with Down syndrome who received detailed psychiatric assessment (n = 186 at the first time point; n = 134 at the second time point, 2 years later). RESULTS The prevalence of Down syndrome for the 16 years and over population was 5.9 per 10 000 general population. Point prevalence of mental ill-health of any type, excluding specific phobias, was 23.7% by clinical, 19.9% by Diagnostic Criteria for Psychiatric Disorders for use with Adults with Learning Disabilities/Mental Retardation (DC-LD), 11.3% by ICD-10 Classification of Mental and Behavioural Disorders: Diagnostic Criteria for Research (DCR-ICD-10) and 10.8% by Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition Revised (DSM-IV-TR) criteria. Two-year incidence of mental ill-health of any type was 14.9% by clinical and DC-LD, 9.0% by DCR-ICD-10 and 3.7% by DSM-IV-TR criteria. The highest incidence was for depressive episode (5.2%) and dementia/delirium (5.2%). Compared with persons with intellectual disabilities (ID) of all causes, the standardized rate for prevalence of mental ill-health was 0.6 (0.4-0.8), or 0.4 (0.3-0.6) if organic disorders are excluded, and the standardized incidence ratio for mental ill-health was 0.9 (0.6-1.4), or 0.7 (0.4-1.2) if organic disorders are excluded. Urinary incontinence was independently associated with mental ill-health, whereas other personal factors, lifestyle and supports, and other types of health needs and disabilities were not. CONCLUSIONS Mental ill-health is less prevalent in adults with Down syndrome than for other adults with ID. The pattern of associated factors differs from that is found for other adults with ID, with few associations found. This suggests that the protection against mental ill-health is biologically determined in this population, or that there are other factors protective for mental ill-health yet to be identified for the population with Down syndrome.

Injuries, falls and accidents among adults with intellectual disabilities. Prospective cohort study.

BACKGROUND Injuries are among the leading causes of death and disability in the world and a major public health concern. Falls are a common cause. Young persons with intellectual disabilities (ID) have a higher rate and different pattern of injuries than the general population, but little is known regarding adults. METHODS The aim of this study was to determine the incidence and types of injuries experienced by a community-based cohort of adults with ID (n = 511) in a 12-month period. Face-to-face interviews were conducted with participants 2 years after they had first been recruited into a longitudinal study. RESULTS Incidence of at least one injury in a 12-month period was 20.5% (105), of which 12.1% (62) was because of falls. Incident injury was predicted by having epilepsy and not having autism. Incident fall injury was predicted by urinary incontinence, while Down syndrome reduced risk. CONCLUSIONS Adults with ID do experience a higher rate of injuries and falls when compared with the general population. The results of this study highlight this, and hence the need to work towards the development of interventions for injury and falls prevention in this population.

The prevalence and incidence of mental ill-health in adults with autism and intellectual disabilities

The prevalence, and incidence, of mental ill-health in adults with intellectual disabilities and autism were compared with the whole population with intellectual disabilities, and with controls, matched individually for age, gender, ability-level, and Down syndrome. Although the adults with autism had a higher point prevalence of problem behaviours compared with the whole adult population with intellectual disabilities, compared with individually matched controls there was no difference in prevalence, or incidence of either problem behaviours or other mental ill-health. Adults with autism who had problem behaviours were less likely to recover over a two-year period than were their matched controls. Apparent differences in rates of mental ill-health are accounted for by factors other than autism, including Down syndrome and ability level.

The circumstances and impact of injuries on adults with learning disabilities

Introduction: People with learning disabilities experience higher rates of injury compared to the general population, but little is known about the circumstances and perceived impact of these injuries on people with learning disabilities themselves. Method: Content analysis was conducted from interviews with 113 adults with learning disabilities who had at least one injury in a 12-month period. Qualitative interviews were conducted with ten adults with learning disabilities (and their carers where appropriate) who had experienced serious or frequent injury or frequent falls with or without injury in a 12-month period. Findings: The most commonly reported contributory factors for injuries and/or falls were related to physical health status (for example, epilepsy) and the environment (for example, walking/banging into furniture or stairs/steps). In terms of perceived impact, the development of fear of walking outdoors unsupported or fear of crossing a road were highlighted. The non-use and misuse of assistive technology was also highlighted as a concern. Conclusion: These findings demonstrate that occupational therapists have a key role to play in tailoring injury and fall prevention strategies and interventions for people with learning disabilities. In particular, environmental assessment and monitored use of assistive technology is important.

The prevalence and incidence of mental ill-health in adults with Down syndrome: observational study

In recent years, an increasing number of practitioners in the UK have applied systemic approaches in their work within intellectual disabilities services. Set within a postmodern paradigm, systemic approaches explore the beliefs and contexts that influence and give meanings to people’s actions and interactions. The approach assumes that all parties are acting in a way that makes sense from their perspective, however problematic the behaviour of any person in the system may appear to others. Practitioners aim to understand the perspectives of the people involved before exploring possibilities for change. Systemic approaches have wide applicability and can be used in a variety of settings: with individuals; families; paid carers; networks of professionals; and with staff teams. Evidence from a variety of sources including, importantly, service users themselves suggests that this approach has a lot to offer. In this roundtable we are aiming to initiate discussion and reflections around different ways of incorporating systemic approaches into service contexts and to share examples from our practice that have invigorated and inspired us as well as those that have presented challenges and dilemmas. Haydon will set the context for the discussion; Baum will describe how different services have found ways of applying the systemic approach in their local context; Rikberg Smyly will share the knowledge that has been accumulated by a range of practitioners; and finally, Lynggaard will highlight some common dilemmas that may arise in this work. Further discussion will be shaped by the questions and interests of participants.

Prevalence, incidence, and remission of self-injurious and aggressive behaviour: observational study

Aim: Phenylketonuria (PKU) is a congenital metabolic disorder that, unless treated with a special low-phenylalanine (low-phe) diet from infancy, leads to severe intellectual disabilities. The aim of this study was to test the efficacy of the low-phe diet for adults with untreated PKU. Method: 36 adults with untreated PKU were recruited into a double-blind randomized controlled crossover trial. Measures included weekly blood phenylalanine levels, daily behavioural records, and, at the end of each phase, standardized measures of skills and behavioursand direct observations. Results: Blood phenylalanine levels were well controlled by the low-phe diet but there were no associated significant changes in challenging behaviours. However, people who had the low-phe diet first were significantly more likely to withdraw (chi-squared, p<0.01). Also carers made more positive comments at the end of the low-phe diet phase than at the end of other phases (chi-squared, p<0.001). Conclusions: Carers’ responses suggest detectable improvements in the behaviour of adults with PKU when treated with low-phe diet, but this is not supported by quantitative analysisA pilot project was undertaken with a Queensland Government organization called the Community Visitors Program. This program employees people to visit adults who have impaired capacity, that is someone who has a psychiatric disability, intellectual disability, acquired brain injury or dementia. The Community Visitor helps people understand their rights and protect their interests. Aim: To gain information regarding the prevalence of challenging behaviour in Queensland. Method: A structured questionnaire was developed and 25 Visitors collected data about the nature of the people they visit and the exhibition of their challenging behaviour. Information regarding the topography, frequency and severity of challenging behaviours was obtained (over a three-month period). Data were collected across four sites: acute short stay mental health facilities, long stay mental health facilities, disability sector houses such as hostels and supported accommodation facilities such as group homes. This research was the first time any structured information had been collected about the nature of challenging behaviour being exhibited by those with impaired capacity in Queensland. Results: These give a description of how many people with impaired capacity are exhibiting challenging behaviour in Queensland across the described sites. Conclusions: Implications for this data are discussed.