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Background: Adults with intellectual disabilities often display behaviour that challenges that is a result of biological differences, psychological challenges, and lack of appropriate social support. Intensive Support Teams (IST) are recommended to support the care needs of this group and avoid hospitalisation. However, little attention has been paid to the perspectives of stakeholders who manage, work in, or use ISTs., Method: Interviews and focus groups were conducted with 50 stakeholders (IST service managers and professionals, adults with intellectual disabilities, and family and paid carers) of ISTs. Services operated according to one of two service models previously identified in ISTs in England (enhanced or independent)., Results: Thematic analysis identified accessible and flexible support, individualised care, and the involvement of carers and other relevant agencies in management plans and reviews as features of good IST care highlighted by all stakeholder groups. IST managers and professionals described the key challenges of current IST provision as unclear referral criteria, limited interfaces with other local services, and perceived threats associated with funding and staff retention. Findings were similar between the two IST models., Conclusions: ISTs are able to offer care and specialist support that is valued by families, service users and other care providers. However, they face several operational challenges that should be addressed if ISTs are to reach their potential along with community intellectual disability services in supporting adults with intellectual disabilities who display behaviour that challenges in the community., (© 2023 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Intensive support teams (ISTs) are recommended for individuals with intellectual disabilities who display behaviours that challenge. However, there is currently little evidence about the clinical and cost-effectiveness of IST models operating in England., Aims: To investigate the clinical and cost-effectiveness of IST models., Method: We carried out a cohort study to evaluate the clinical and cost-effectiveness of two previously identified IST models (independent and enhanced) in England. Adult participants ( n = 226) from 21 ISTs (ten independent and 11 enhanced) were enrolled. The primary outcome was change in challenging behaviour between baseline and 9 months as measured by the Aberrant Behaviour Checklist-Community version 2., Results: We found no statistically significant differences between models for the primary outcome (adjusted β = 4.27; 95% CI -6.34 to 14.87; P = 0.430) or any secondary outcomes. Quality-adjusted life-years (0.0158; 95% CI: -0.0088 to 0.0508) and costs (£3409.95; 95% CI -£9957.92 to £4039.89) of the two models were comparable., Conclusions: The study provides evidence that both models were associated with clinical improvement for similar costs at follow-up. We recommend that the choice of service model should rest with local services. Further research should investigate the critical components of IST care to inform the development of fidelity criteria, and policy makers should consider whether roll out of such teams should be mandated.

Sleep is vital for our physical and mental health. Studies have shown that there is a high prevalence of sleep disorders and sleep difficulties amongst adults with intellectual disabilities. Despite this, sleep is often overlooked or its disorders are considered to be difficult to treat in adults with intellectual disabilities. There is a significant amount of research and guidance on management of sleep disorders in the general population. However, the evidence base for sleep disorders in adults with intellectual disabilities is limited. In this review paper, we look at the current evidence base for sleep disorders in adults with an intellectual disability, discuss collaborative working between intellectual disabilities psychiatrists and sleep medicine specialists to manage sleep disorders, and provide recommendations for future directions.

The draft Mental Health Bill, which amends the Mental Health Act 1983 for England and Wales, proposes protections for people with intellectual disability and/or autism (ID/A) to prevent detention in hospital in the absence of mental illness. This editorial critically appraises the positive impact and unintended consequences of the proposed reforms for people with ID/A.

An area of interest presently is the lingering symptoms after COVID-19, i.e. post-COVID-19 syndrome (PCS). Specifics of diagnosis and management of PCS are emerging. However, vulnerable populations such as those with intellectual disabilities, who were disproportionately affected by the pandemic, risk being 'left behind' from these considerations.

There is growing evidence for the use of pharmacogenomics in psychotropic prescribing. People with intellectual disabilities are disproportionately prescribed psychotropics and are at risk of polypharmacy. There is an urgent need for safeguards to prevent psychotropic overprescribing but it is equally crucial that this population is not left behind in such exciting initiatives. Understanding how genetic variations affect medications is a step towards personalised medicine. This may improve personalised prescribing for people with intellectual disabilities, especially given the high rate of psychiatric and behavioural problems in this population. Our editorial explores opportunities and challenges that pharmacogenomics offers for the challenges of polypharmacy and overprescribing of psychotropics in people with intellectual disabilities.

Purpose: This paper aims to examine effective diagnostic and treatment pathways for attention deficit hyperactivity disorder (ADHD) in prison settings given the high prevalence of ADHD and comorbidities in the prison population., Design/methodology/approach: Two studies were carried out in two separate prisons in London. Firstly, data were collected to understand the prevalence of ADHD and the comorbidities. The second study used quality improvement (QI) methodology to assess the impact of a diagnostic and treatment pathway for prisoners with ADHD., Findings: Of the prisoners, 22.5% met the diagnostic criteria for ADHD. Nearly half of them were screened positive for autistic traits, with a higher prevalence of mental disorders among prisoners with ADHD compared to those without. The QI project led to a significant increase in the number of prisoners identified as requiring ADHD assessment but a modest increase in the number of prisoners diagnosed or treated for ADHD., Originality/value: Despite various challenges, an ADHD diagnostic and treatment pathway was set up in a prison using adapted QI methodology. Further research is needed to explore the feasibility of routine screening for ADHD in prison and examine at a national level the effectiveness of current ADHD prison pathways., (© Emerald Publishing Limited.)

Although the research base on mental health in intellectual disabilities is advancing, there are long-standing barriers that hinder successful completion of funded studies. A variety of stakeholders hold the key to mitigating the challenges and arriving at sustainable solutions that involve researchers, experts by experience, clinicians and many others in the research pathway. Lessons learned during the COVID-19 pandemic can also contribute to improvements in the conduct of research in the medium to long term. People with an intellectual disability and mental health conditions deserve high standards of evidence-based care.

People with DSM-5 intellectual disability/intellectual developmental disorder (ID/IDD) or ICD-11 disorders of intellectual development (DID) have multiple healthcare needs, but in many countries these needs are neither recognised nor managed effectively. This paper discusses the negative impact that stigma, discrimination and social exclusion have on the identification and care of persons with ID/IDD in low- and middle-income countries (LMICs). It also reviews different models of care for children, adolescents and adults. In discussing some initiatives in LMICs the emphasis is on early diagnosis, with success in providing locally sourced care for affected people and their families. This is where the medical, social and rights-based models of care intersect and is a premise of the person-centred biopsychosocial framework of the World Psychiatric Association's Presidential Action Plan 2020-2023. The plan invites psychiatrists to take a lead in changing the culture of care, as well as medical education, clinical training and research, with a renewed emphasis on workforce integration and service development in terms of community-based rehabilitation strategies., Competing Interests: None., (© The Authors 2021.)

The validity of dementia diagnostic criteria depends on their ability to distinguish dementia symptoms from pre-existing cognitive impairments. The study aimed to assess inter-rater reliability and concurrent validity of DSM-5 criteria for neurocognitive disorder in Down syndrome. The utility of mild neurocognitive disorder as a distinct diagnostic category, and the association between clinical symptoms and neurodegenerative changes represented by the plasma biomarker neurofilament light were also examined. 165 adults with Down syndrome were included. Two clinicians independently applied clinical judgement, DSM-IV, ICD-10 and DSM-5 criteria for dementia (or neurocognitive disorder) to each case. Inter-rater reliability and concurrent validity were analysed using the kappa statistic. Plasma neurofilament light concentrations were measured for 55 participants as a marker of neurodegeneration and between group comparisons calculated. All diagnostic criteria showed good inter-rater reliability apart from mild neurocognitive disorder which was moderate (k = 0.494). DSM- 5 criteria had substantial concurrence with clinical judgement (k = 0.855). When compared to the no neurocognitive disorder group, average neurofilament light concentrations were higher in both the mild and major neurocognitive disorder groups. DSM-5 neurocognitive disorder criteria can be used reliably in a Down syndrome population and has higher concurrence with clinical judgement than the older DSM-IV and ICD-10 criteria. Whilst the inter-rater reliability of the mild neurocognitive disorder criteria was modest, it does appear to identify people in an early stage of dementia with underlying neurodegenerative changes, represented by higher average NfL levels.

Background : Attention-deficit hyperactivity disorder (ADHD) is higher in people with intellectual disability (ID) compared to the general population. Available limited evidence suggests this population has increased psychological problems, diagnostic overshadowing and psychotropic prescribing. This audit Identifies and analyzes real-world characteristics, diagnostic practices, treatment, and management of ADHD in adults with ID. Research Design and Methods: Pooled retrospective case note data for people with ID and ADHD, collected from 30 organizations across the UK, were analyzed. Patients were classified into mild and moderate-profound ID groups. Associated mental health and neurodevelopmental co-morbidity, Demographics, concomitant psychotropics, and mental and behavioral concerns were collected. Group differences were reported using logistic regression models. Results: Of 445 participants, 73% had co-occurring autism spectrum disorder (ASD) and 65% were prescribed ADHD medications. Those on ADHD medication were less likely to be prescribed antipsychotics (p < 0.001) and antidepressants (p < 0.001). Multiple significant differences were found in ADHD medication response between ID groups and those with/without co-morbid ASD but not associated with challenging behavior reduction. Conclusions: High levels of neurodevelopmental and psychiatric comorbidity were found. ID severity and the presence of ASD appear to influence the use of certain psychotropic medications. Appropriate use of ADHD medication appears to reduce psychotropic polypharmacy.

Introduction: Approximately 17% of adults with intellectual disabilities (ID) living in the community display behaviours that challenge. Intensive support teams (ISTs) have been recommended to provide high-quality responsive care aimed at avoiding unnecessary admissions and reducing lengthy inpatient stays in England. We have identified two models of ISTs (model 1: enhanced provision and model 2: independent provision). This study aims to investigate the clinical and cost-effectiveness of the two models of ISTs., Methods and Analysis: A cohort of 226 adults with ID displaying behaviour that challenges who receive support from ISTs from each model will be recruited and assessed at baseline and 9 months later to compare the clinical and cost-effectiveness between models. The primary outcome is reduction in challenging behaviour measured by the Aberrant Behaviour Checklist-Community (ABC-C). The mean difference in change in ABC score between the two IST models will be estimated from a multilevel linear regression model. Secondary outcomes include mental health status, clinical risk, quality of life, health-related quality of life, level of functioning and service use. We will undertake a cost-effectiveness analysis taking both a health and social care and wider societal perspective. Semistructured interviews will be conducted with multiple stakeholders (ie, service users, paid/family carers, IST managers/staff) to investigate the experience of IST care as well as an online survey of referrers to capture their contact with the teams., Ethics and Dissemination: The study was approved by the London-Bromley Research Ethics Committee (REC reference: 18/LO/0890). Informed consent will be obtained from the person with ID, or a family/nominated consultee for those lacking capacity and from his/her caregivers. The findings of the study will be disseminated to academic audiences, professionals, experts by experience and arm's-length bodies and policymakers via publications, seminars and digital platforms., Trial Registration Number: ClinicalTrials.gov Registry (NCT03586375)., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.)

Background: Valproate (VPA) is a known teratogen associated with greater risk of major congenital malformations and other neurodevelopmental sequelae than all other licensed antiepileptic medicines. To reduce the potential for VPA-related teratogenicity, the European Medicines Agency issued recommendations in 2018. Over two-thirds of women/girls with intellectual disability (ID) may have treatment-resistant epilepsy that could benefit from VPA treatment., Aims: This investigation compared VPA prescribing practice for women/girls with ID between European countries, specifically evaluating the practice in the UK with that in other countries., Methods: An expert working group with representation from key stake-holding organizations developed a survey for dissemination to relevant professionals across Europe., Results: Seventy one responses were received (27 UK, 44 Europe). Clinicians in the UK were more likely to report that they are working to mandatory regulations compared with European respondents (P = .015). European respondents were less likely to be aware of user-independent contraception options (P = .06). In The UK, VPA regulations were more likely to be applied to women with ID than in Europe (P = .024)., Conclusion: There is heterogeneity in the application of VPA regulations across Europe for women/girls with ID. In both the UK and Europe, the regulations lack suitable adjustments for specific ID-related factors., (© 2020 The Authors. Acta Neurologica Scandinavica published by John Wiley & Sons Ltd.)

Background: A high proportion of adults with intellectual disabilities are prescribed off-licence antipsychotics in the absence of a psychiatric illness. The National Health Service in England launched an initiative in 2016, 'Stopping over-medication of people with a learning disability [intellectual disability], autism or both' (STOMP), to address this major public health concern., Aims: To gain understanding from UK psychiatrists working with adults with intellectual disabilities on the successes and challenges of withdrawing antipsychotics for challenging behaviours., Method: An online questionnaire was sent to all UK psychiatrists working in the field of intellectual disability (estimated 225)., Results: Half of the 88 respondents stated that they started withdrawing antipsychotics over 5 years ago and 52.3% stated that they are less likely to initiate an antipsychotic since the launch of STOMP. However, since then, 46.6% are prescribing other classes of psychotropic medication instead of antipsychotics for challenging behaviours, most frequently the antidepressants. Complete antipsychotic discontinuation in over 50% of patients treated with antipsychotics was achieved by only 4.5% of respondents (n = 4); 11.4% reported deterioration in challenging behaviours in over 50% of patients on withdrawal and the same proportion (11.4%) reported no deterioration. Only 32% of respondents made the diagnosis of psychiatric illness in all their patients themselves. Family and paid carers' concern, lack of multi-agency and multidisciplinary input and unavailability of non-medical psychosocial intervention are key reported factors hampering the withdrawal attempt., Conclusions: There is an urgent need to develop national guidelines to provide a framework for systematic psychotropic drug reviews and withdrawal where possible.

Background: Approximately 18% of adults with intellectual disabilities living in the community display behaviours that challenge. Intensive support teams (ISTs) have been recommended to provide high-quality responsive care aimed at avoiding unnecessary admissions and reducing lengthy in-patient stays., Aims: To identify and describe the geographical distribution and characteristics of ISTs, and to develop a typology of IST service models in England., Method: We undertook a national cross-sectional survey of 73 ISTs. A hierarchical cluster analysis was performed based on six prespecified grouping factors (mode of referrals, size of case-load, use of outcome measures, staff composition, hours of operation and setting of service). A simplified form of thematic analysis was used to explore free-text responses., Results: Cluster analysis identified two models of IST provision: (a) independent and (b) enhanced provision based around a community intellectual disability service. ISTs aspire to adopt person-centred care, mostly use the framework of positive behaviour support for behaviour that challenges, and report concerns about organisational and wider context issues., Conclusions: This is the first study to examine the delivery of intensive support to people with intellectual disability and behaviour that challenges. A two-cluster model of ISTs was found to have statistical validity and clinical utility. The clinical heterogeneity indicates that further evaluation of these service models is needed to establish their clinical and cost-effectiveness.

Introduction : This clinical guidance looks at the specific concerns of delivery of medical treatment for people with epilepsy and intellectual disability (ID). People with ID have not been included in licensing drug trials of AEDs. However, this population has an over-representation of seizure comorbidity, treatment resistance, and polypharmacy while also being vulnerable to not having their views considered. Areas covered : This review summarizes the current most robust evidence available for the use of licensed AEDs in people with epilepsy and ID. The article provides practical evidence-based clinical information to help prescribers choose the most appropriate AED from the drugs discussed. The article highlights other important individualized factors to consider before initiating or changing antiepileptic medication. Expert opinion : A 'traffic light' coding system is applied to commonly used AEDs based on the level of evidence and expert clinical experience. Managing epilepsy in the ID population requires specialist care. Treatment plans need to be holistic and tailored to accommodate an individual's comorbidities, concurrent medications, general health, social and environmental status. There is a need for large quality trial data to assess the most suitable AEDs on seizure control and quality of life in this population with complex needs.

Background: There is little evidence to guide pharmacological treatment in adults with Down syndrome and Alzheimer's disease. Aims To investigate the effect of cholinesterase inhibitors or memantine on survival and function in adults with Down syndrome and Alzheimer's disease., Method: This was a naturalistic longitudinal follow-up of a clinical cohort of 310 people with Down syndrome diagnosed with Alzheimer's disease collected from specialist community services in England., Results: Median survival time (5.59 years, 95% CI 4.67-6.67) for those on medication (n = 145, mainly cholinesterase inhibitors) was significantly greater than for those not prescribed medication (n = 165) (3.45 years, 95% CI 2.91-4.13, log-rank test P<0.001). Sequential assessments demonstrated an early effect in maintaining cognitive function., Conclusions: Cholinesterase inhibitors appear to offer benefit for people with Down syndrome and Alzheimer's disease that is comparable with sporadic Alzheimer's disease; a trial to test the effect of earlier treatment (prodromal Alzheimer's disease) in Down syndrome may be indicated. Declaration of interest A.S. has undertaken consulting for Ono Pharmaceuticals, outside the submitted work. Z.W. has received a consultancy fee and grant from GE Healthcare, outside the submitted work.

Background: People with Down syndrome (DS) are an ultra-high risk population for Alzheimer's disease (AD). Understanding the factors associated with age of onset and survival in this population could highlight factors associated with modulation of the amyloid cascade., Objective: This study aimed to establish the typical age at diagnosis and survival associated with AD in DS and the risk factors associated with these., Methods: Data was obtained from the Aging with Down Syndrome and Intellectual Disabilities (ADSID) research database, consisting of data extracted from clinical records of patients seen by Community Intellectual Disability Services (CIDS) in England. Survival times when considering different risk factors were calculated., Results: The mean age of diagnosis was 55.80 years, SD 6.29. Median survival time after diagnosis was 3.78 years, and median age at death was approximately 60 years. Survival time was associated with age of diagnosis, severity of intellectual disability, living status, anti-dementia medication status, and history of epilepsy. Age at diagnosis and treatment status remained predictive of survival time following adjustment., Conclusion: This study provides the best estimate of survival in dementia within the DS population to date, and is in keeping with previous estimates from smaller studies in the DS population. This study provides important estimates and insights into possible predictors of survival and age of diagnosis of AD in adults with DS, which will inform selection of participants for treatment trials in the future.

People with Intellectual Disability (ID) have cognitive impairments that affect their level of functioning the causes of which are multiple and often unknown. Behavioural difficulties are common among people with ID. Attention Deficit Hyperactivity Disorder (ADHD) is recognised more among people with Intellectual Disability and could be a cause of problem behaviours. Screening and assessing for ADHD in people with ID is difficult because of the paucity of robust assessment tools and diagnostic criteria.

Objective: Dementia is a common clinical presentation among older adults with Down syndrome. The presentation of dementia in Down syndrome differs compared with typical Alzheimer's disease. The performance of manualised dementia criteria in the International Classification of Diseases (ICD)-10 and Diagnostic and Statistical Manual of Mental Disorders-IV-Text Revision (DSM-IV-TR) is uncertain in this population.We aimed to determine the concurrent validity and reliability of clinicians' diagnoses of dementia against ICD-10 and DSM-IV-TR diagnoses. Validity of clinical diagnoses were also explored by establishing the stability of diagnoses over time., Methods: We used clinical data from memory assessments of 85 people with Down syndrome, of whom 64 (75.3%) had a diagnosis of dementia. The cases of dementia were presented to expert raters who rated the case as dementia or no dementia using ICD-10 and DSM-IV-TR criteria and their own clinical judgement., Results: We found that clinician's judgement corresponded best with clinically diagnosed cases of dementia, identifying 84.4% cases of clinically diagnosed dementia at the time of diagnosis. ICD-10 criteria identified 70.3% cases, and DSM-IV-TR criteria identified 56.3% cases at the time of clinically diagnosed dementia. Over time, the proportion of cases meeting ICD-10 or DSM-IV-TR diagnoses increased, suggesting that experienced clinicians used their clinical knowledge of dementia presentation in Down syndrome to diagnose the disorder at an earlier stage than would have been possible had they relied on the classic description contained in the diagnostic systems., Conclusions: Clinical diagnosis of dementia in Down syndrome is valid and reliable and can be used as the standard against which new criteria such as the DSM-5 are measured., (Copyright © 2014 John Wiley & Sons, Ltd.)

Given medical and social advances, the life expectancy of individuals with intellectual disability (ID) has increased dramatically, leading to a generation of older individuals with such disabilities. This review focuses on the pharmacological treatment of behavioral and psychiatric symptoms and disorders in older adults with ID. Older adults with ID often present with medical co-morbidities and mental health issues. Medication management of behavioral and psychiatric problems is complicated by a higher risk for adverse events, lack of decision-making capacity, and complex care networks. Some studies have shown that individuals with ID and co-morbid mental disorders are undertreated in comparison with those with similar disorders in the general population, resulting in poorer outcomes. However, older adults with ID are also at risk of polypharmacy, and older age is a risk factor for development of side effects. A general principle is that medication treatment for psychiatric disorders in older individuals with ID should be started at low dosages and increased cautiously while monitoring response and side effects. The use of psychotropic drugs for older individuals with ID and behavioral problems remains controversial, particularly in those with dementia.

Background: People with intellectual disabilities (ID) have many comorbidities but experience inequities in access to health care. National Health Service England uses an opt-in incentive scheme to encourage annual health checks of patients with ID in primary care. We investigated whether the first 3 years of the programme had improved health care of people with ID., Methods: We did a longitudinal cohort study that used data from The Health Improvement Network primary care database. We did multivariate logistic regression to assess associations between various characteristics and whether or not practices had opted in to the incentivised scheme., Findings: We assessed data for 8692 patients from 222 incentivised practices and those for 918 patients in 48 non-incentivised practices. More blood tests (eg, total cholesterol, odds ratio [OR] 1·88, 95% CI 1·47-2·41, p<0·0001) general health measurements (eg, smoking status, 6·0, 4·10-8·79, p<0·0001), specific health assessments (eg, hearing, 24·0, 11·5-49·9, p<0·0001), and medication reviews (2·23, 1·68-2·97, p<0·0001) were done in incentivised than in non-incentivised practices, and more health action plans (6·15, 1·41-26·9, p=0·0156) and secondary care referrals (1·47, 1·05-2·05, p=0·0256) were made. Identification rates were higher in incentivised practices for thyroid disorder (OR 2·72, 95% CI 1·09-6·81, p=0·0323), gastrointestinal disorders (1·94, 1·03-3·65, p=0·0390), and obesity (2·49, 1·76-3·53, p<0·0001)., Interpretation: Targeted annual health checks for people with ID in primary care could reduce health inequities., Funding: National Institute for Health Research., (Copyright © 2014 Buszewicz et al. Open Access article distributed under the term of CC BY. Published by Elsevier Ltd.. All rights reserved.)

Aims and method To develop a programme to help undergraduate medical students and postgraduate trainees to improve their skills in communicating with people with intellectual disabilities through teaching sessions that had input from simulated patients with intellectual disabilities. We conducted four sessions of training for 47 undergraduate 4th-year medical students. The training involved a multiprofessional taught session followed by a clinical scenario role-play with simulated patients who were people with intellectual disabilities. The training was assessed by completing the healthcare provider questionnaire before and after the training. Results There were improvements in the students' perceived skill, comfort and the type of clinical approach across all three scenarios. Clinical implications By involving people with intellectual disabilities in training medical students there has been a significant improvement in students' communication skills in areas of perceived skills, comfort and type of clinical approach which will raise the quality of care provided by them in the future.

Laos (officially the Lao People's Democratic Republic) is a land-locked country in South East Asia, and one of the three former French colonies of Indochina. Since 1989, when it was opened to foreigners, there has been an influx of non-governmental organisations (NGOs) and tourists. From 1998 tourist numbers have increased every year, and Laos has become the 'must see' destination in a travel industry that craves the exotic. It has an old and rich culture with a diverse population. The climate is tropical, with a cool dry season and a hot wet season, when temperatures reach 38°C.