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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.

Background: Studies have reported increased prevalence of physical and mental health conditions in people with intellectual disabilities (ID) compared to people without intellectual disabilities. However, there are no studies looking into specific health conditions at a national level and comparing with areas that are socio-economically disadvantaged (e.g. low income and low education attainment). This study examines and compares the prevalence of physical and mental health morbidity in people with and without intellectual disabilities at a local and national level in the UK. Method: This study was an anecdotal analysis of physical and mental health data and annual health check-up for England (national), London (regional) and Haringey (inner-city borough of London) in 2016/17 using data from the NHS Digital database. Results: Patterns of mental and physical conditions for people with and without intellectual disabilities were similar across Haringey, London and England data. Severe mental illness was more prevalent among people with intellectual disabilities compared to non-intellectual disability peers. This further increased in the inner-city London borough for the intellectual disability group. Certain physical health conditions were also more prevalent in people with intellectual disabilities. Certain activities such as monitoring blood pressure, recording body mass index and checking HbA1C were better in people with intellectual disabilities. Uptake of annual health checks for people with intellectual disabilities remained around 50%. Discussion: This study further highlights the increased prevalence of mental and physical disorders in people with intellectual disabilities compared to people without intellectual disabilities. Further increased risk of mental disorders in an inner London borough compared to national data aligns with existing literature that highlights the negative impact of socio-economic deprivation on mental and physical health. Further studies are needed to assess the health and social care measures that can reduce the physical and mental health morbidity in people with intellectual disabilities.

The diagnosis of ADHD is often missed or misdiagnosed in people with intellectual disability. Despite a significant growth in literature on the diagnosis and treatment of ADHD in people without intellectual disability, there have been few studies on ADHD in people with intellectual disability. In this paper, we describe a group of adults with intellectual disability and ADHD disorder open to a specialist community intellectual disability service. We examined the frequency and dose of antipsychotic use and considered whether ADHD disorder medication is associated with a reduced use of psychotropic medication. The study found a high incidence of autism in people with intellectual disability and ADHD. Men with intellectual disability were given the diagnosis of ADHD more often compared to women with intellectual disability. Only 64% of people with ADHD and intellectual disability taking ADHD medication were on antipsychotic medications compared to 93% of people with ADHD and intellectual disability without ADHD medications. This generates several hypotheses such as whether antipsychotic medications are prescribed to control ADHD symptoms, whether use of ADHD medications can reduce the use of antipsychotic medications and/or whether antipsychotics are used to treat underlying psychiatric comorbidities in people with ADHD. Randomised controlled trials are needed to answer the question whether use of ADHD medication reduces the use of antipsychotic medication in people with intellectual disability and ADHD. Further studies are also needed to explore reason for not using ADHD medication in certain patients with ADHD and intellectual disability and what treatment options are effective in treating psychiatric comorbidities in people with ADHD and intellectual disability.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This article discusses the prevalence of neurodevelopmental disorders, such as autism and ADHD, among individuals in offender services. It highlights the importance of considering these disorders as core factors in offending behavior and ensuring that their impact is not overlooked in treatment services. The article presents various clinical presentations of neurodevelopmental disorders among offenders in different settings, including inpatient services, youth offending, and Court Liaison and Diversion services. It also explores the impact of prenatal exposure to alcohol on cognitive functioning among young offenders and discusses the issue of extremism among autistic individuals. The article emphasizes the need for criminal justice systems to recognize and accommodate individuals with neurodivergent identities, with the goal of improving care and treatment. [Extracted from the article]

SUMMARY: Attention-deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder with a higher prevalence rate in people with intellectual disability compared with their peers without such disability. The classic presentation is that of inattention and/or hyperactivity and impulsivity, but these symptoms can manifest differently in people with intellectual disability. Despite a higher prevalence, the rate of diagnosis and treatment of ADHD in intellectual disability remains low. This article discusses the clinical presentation of ADHD in people with intellectual disability and the relationship between ADHD and other comorbid conditions, such as autism and bipolar disorder. Pharmacological and non-pharmacological interventions are discussed from a practical and a clinical point of view. [ABSTRACT FROM AUTHOR]

Summary: 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Accessible summary: People with intellectual disability have multiple health problems.People with intellectual disability have more physical and mental health conditions than people without intellectual disabilities.People with intellectual disability may need more health checks due to increased prevalence of physical and mental illnesses.More studies are needed to understand what interventions are effective to reduce health problems in people with intellectual disability. Background: Studies have reported increased prevalence of physical and mental health conditions in people with intellectual disabilities (ID) compared to people without intellectual disabilities. However, there are no studies looking into specific health conditions at a national level and comparing with areas that are socio‐economically disadvantaged (e.g. low income and low education attainment). This study examines and compares the prevalence of physical and mental health morbidity in people with and without intellectual disabilities at a local and national level in the UK. Method: This study was an anecdotal analysis of physical and mental health data and annual health check‐up for England (national), London (regional) and Haringey (inner‐city borough of London) in 2016/17 using data from the NHS Digital database. Results: Patterns of mental and physical conditions for people with and without intellectual disabilities were similar across Haringey, London and England data. Severe mental illness was more prevalent among people with intellectual disabilities compared to non‐intellectual disability peers. This further increased in the inner‐city London borough for the intellectual disability group. Certain physical health conditions were also more prevalent in people with intellectual disabilities. Certain activities such as monitoring blood pressure, recording body mass index and checking HbA1C were better in people with intellectual disabilities. Uptake of annual health checks for people with intellectual disabilities remained around 50%. Discussion: This study further highlights the increased prevalence of mental and physical disorders in people with intellectual disabilities compared to people without intellectual disabilities. Further increased risk of mental disorders in an inner London borough compared to national data aligns with existing literature that highlights the negative impact of socio‐economic deprivation on mental and physical health. Further studies are needed to assess the health and social care measures that can reduce the physical and mental health morbidity in people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Accessible summary: Attention deficit hyperactivity disorder (ADHD) is often missed/underdiagnosed in people with intellectual disability compared to people without intellectual disability.The presence of intellectual disability, autism and challenging behaviour should raise the suspicion of ADHD as comorbid neurodevelopmental disorder.Treatment of ADHD in people with intellectual disability may reduce the need for antipsychotic medications. The diagnosis of ADHD is often missed or misdiagnosed in people with intellectual disability. Despite a significant growth in literature on the diagnosis and treatment of ADHD in people without intellectual disability, there have been few studies on ADHD in people with intellectual disability. In this paper, we describe a group of adults with intellectual disability and ADHD disorder open to a specialist community intellectual disability service. We examined the frequency and dose of antipsychotic use and considered whether ADHD disorder medication is associated with a reduced use of psychotropic medication. The study found a high incidence of autism in people with intellectual disability and ADHD. Men with intellectual disability were given the diagnosis of ADHD more often compared to women with intellectual disability. Only 64% of people with ADHD and intellectual disability taking ADHD medication were on antipsychotic medications compared to 93% of people with ADHD and intellectual disability without ADHD medications. This generates several hypotheses such as whether antipsychotic medications are prescribed to control ADHD symptoms, whether use of ADHD medications can reduce the use of antipsychotic medications and/or whether antipsychotics are used to treat underlying psychiatric comorbidities in people with ADHD. Randomised controlled trials are needed to answer the question whether use of ADHD medication reduces the use of antipsychotic medication in people with intellectual disability and ADHD. Further studies are also needed to explore reason for not using ADHD medication in certain patients with ADHD and intellectual disability and what treatment options are effective in treating psychiatric comorbidities in people with ADHD and intellectual disability. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Foot disorders affect people with intellectual disability and have an impact on their ability to mobilize; their prevalence appears to be higher than in the general population. Foot problems are recognized as part of certain syndromes associated with intellectual disabilities. Bony deformities of the foot, general health disorders, musculoskeletal disorders, and inappropriate footwear contribute to the development and aggravation of foot disorders. People with intellectual disability generally are disadvantaged as they do not have sufficient access to podiatric services even when foot problems are well known. Attention to people's foot health has important benefits to their health, social functioning, and mobility. Issues in the management of foot problems include awareness by carers and podiatrists of foot disorders in people with intellectual disabilities, effective communication with the person, and the assessment of mental capacity by podiatrists when proposing interventions to manage the problems. Maintaining people's mobility through active attention to their foot health has benefits not just for the persons but their access to community life and reduced costs in meeting their health needs. [ABSTRACT FROM AUTHOR]

KNOWN AND UNKNOWN PATIENTS LIVING WITH LEARNING DISABILITY National Institute for Health and Care Excellence (NICE) Clinical Knowledge Summary (CKS) on LD states that in practice most patients seen with LD in primary care will have already received a specialist diagnosis.[14] Unfortunately, it is difficult to evidence this, since there is no comprehensive record of patients with a confirmed specialist diagnosis of LD. The call to the government to prioritise COVID-19 vaccinations for all people with learning disability (LD) has featured in the mainstream press recently. [Extracted from the article]

With respect to the issue of intellectual disability as a "lazy diagnosis", the current Code of Practice highlights the need for clarity when assessing people under the MHA. The Faculty of Psychiatry of Intellectual Disability of the Royal College of Psychiatrists welcomes the editorial by Professor Sheila the Baroness Hollins on the use of the Mental Health Act (MHA) in the care of people with intellectual disability.1 It furthers the debate on the MHA, an issue about which the Faculty has remained concerned. [Extracted from the article]

As life expectancy of people with intellectual disabilities (ID) extends into older age, dementia is an increasing cause of morbidity and mortality. To update and summarize current knowledge on dementia in older adults with ID, the authors conducted a comprehensive review of the published literature from 1997-2008 with a specific focus on: (1) epidemiology of dementia in ID in general as well as in specific genetic syndromes; (2) presentation; and (3) diagnostic criteria for dementia. The review drew upon a combination of searches in electronic databases Medline, EMBASE, and PsycINFO for original research papers in English, Dutch, or German. The authors report that varied methodologies and inherent challenges in diagnosis yield a wide range of reported prevalence rates of dementia. Rates of dementia in the population with intellectual disability not because of Down syndrome (DS) are comparable with or higher than the general population. Alzheimer's disease onset in DS appears earlier and the prevalence increases from under 10% in the 40s to more than 30% in the 50s, with varying prevalence reported for those 60 and older. Incidence rates increase with age. Few studies of dementia in other genetic syndromes were identified. Presentation differs in the ID population compared with the general population; those with DS present with prominent behavioral changes believed to be because of frontal lobe deficits. Authors recommend large-scale collaborative studies of high quality to further knowledge on the epidemiology and clinical presentation of dementia in this population. [ABSTRACT FROM AUTHOR]

Authors conducted a systematic review of the available Dutch, English, and German language literature for the period 1997–2008 on the current knowledge on social-psychological and pharmacological caregiving with respect to older adults with intellectual disabilities (ID) affected by dementia. Authors note that caregiving occurs on a personal level between the person and their carer and organizational and interorganizational supports have an impact on the quality of care provided. However, the lack of robust evidence to meet the needs of adults with ID affected by dementia means that service organizations often have to extrapolate from the evidence base of dementia care practices in the general population. The review showed that concerns over staff burden, behavioral interventions, and staff training, and applications of models of care were emerging, but were not systematically studied. Authors noted that pharmacological agents and nonpharmacological, psychosocial techniques were being used to assist carers manage behavior, but the evidence base of both nonpharmacological and pharmacological interventions that can help people with ID and dementia and their carers is insufficient because of the absence of systematic and robust studies. The authors note a need for an international research agenda that begins to address gaps in knowledge. With more adults projected to be affected by dementia, a robust evidence-based body of literature on dementia care in people with ID can help with planning for and providing quality dementia-capable services. [ABSTRACT FROM AUTHOR]

Abstract: Genetic disorders account for a sizeable proportion of learning disabilities. Several disorders are associated with mental ill-health. The commonest examples of psychiatric morbidity include psychosis, depression and dementia. Here, three examples of chromosomal abnormalities that have significant research evidence are used to discuss the origins and management of mental disorders. Adults with Down syndrome may suffer from mood disorders and dementia, which has a prevalence rate of 32% by 59 years of age. Personality changes and behavioural disorders can signal the onset of dementia. Prader–Willi syndrome (PWS) has a complex genetic aetiology. A characteristic behavioural phenotype has been described for the syndrome, which includes psychiatric and psychological manifestations. PWS has been found to be associated with affective disorder. People with fragile X syndrome–the most common identifiable cause of learning disabilities–experience a wide range of developmental and psychological challenges throughout their lifespan. In all three syndromes, understanding of the endophenotypic neuropsychological difficulties facilitates the development of rational and, where possible, syndrome-specific supports and therapies. [Copyright &y& Elsevier]

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.

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.