Aims and Method Twelve intellectual disability psychiatry trainee representatives and 13 training programme directors were surveyed to assess the current state of training, to establish what motivated specialty trainees to choose intellectual disability psychiatry, and to explore issues that might affect retention. Results The combined survey response rate was 83%. All trainees had chosen intellectual disability psychiatry after experience in either their personal or working life. Overall, specialty trainees were satisfied with their training; the majority felt supported to meet training requirements. Trainee isolation was the main concern for current trainees. Clinical implications Recruitment for specialty training in intellectual disability psychiatry is acknowledged to be a concern for workforce planning and could affect access to and quality of psychiatric care for people with intellectual disability. The results of this survey could be used as a guide to improve efforts to attract trainees. Acknowledging and reducing trainee isolation could improve trainee morale.

Accessible summary There is significant concern about medication being given to people with intellectual disability (ID) inappropriately particularly to manage their behaviours which needs to stop. This needs people who work and support people with ID with their distress to be aware of the national concerns and guidance. We checked whether NHS staff who work with people with ID , that is the ID service, are aware of the latest guidance and whether training them will help improve their knowledge. We found that there were differences in knowledge in some groups such as nurses and psychologists compared to others and training can make a positive change. This is important as training can possibly deliver better care to people with ID . Abstract Background Intellectual disability (ID) is associated with polypharmacy particularly off‐label psychotropics for “challenging behaviour.” NHS England introduced the “stopping over medication of people with a learning disability (LD), autism or both” (STOMP) initiative. As ID services are a professionally diverse group, it is important to know whether teams have suitable knowledge to deliver STOMP. The impact of delivering bespoke STOMP training was evaluated. Methods A 21‐item multiple‐choice questionnaire was distributed to three specialist ID teams in the south‐west of England. Current best practice and national guidance knowledge on psychotropic medication use in ID were assessed. One team received bespoke training covering the content of the questionnaire prior to completion. Results Survey participation was 44% (21/48) by the trained team, 34% (15/44) and 70% (7/10) in the untrained teams. The trained team participants scored over 80% on 19/21 questions compared to 15/21 and 16/21 in the untrained teams. Subspeciality analysis of pooled data ( n = 43) showed nursing scored more than 80% on 16/21 questions, psychology 15/21 and allied health professionals (AHPs) 19/21. Nursing and psychology both reported STOMP to be a priority. Majority responded “yes” to potentially being involved in STOMP. Conclusions Better STOMP knowledge and understanding of best practice and guidelines are associated with training. Nursing and psychology are essential to STOMP delivery but scored lower than AHPs. We recommend semi‐structured STOMP training developed locally with national underpinnings for all specialist ID teams, particularly focussed on front‐line staff directly involved in the management of challenging behaviour.

BackgroundThere is little evidence to guide pharmacological treatment in adults with Down syndrome and Alzheimer's disease.AimsTo investigate the effect of cholinesterase inhibitors or memantine on survival and function in adults with Down syndrome and Alzheimer's disease.MethodThis 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.ResultsMedian 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.ConclusionsCholinesterase 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 interestA.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.

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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.

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.

ObjectiveDementia 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.MethodsWe 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.ResultsWe 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.ConclusionsClinical 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.

Purpose – People with Down's syndrome are at increased risk of developing early onset Alzheimer's disease. It has been recommended that all adults with Down's syndrome receive baseline neuropsychological testing for dementia. In certain areas prospective screening of people with Down's syndrome takes place to ensure the early diagnosis of the condition. However, little has been published on the value of this type of screening. The purpose of this paper is to report on a prospective screening programme and asks whether the programme is effective in identifying dementia-related changes in people with Down's syndrome and whether the current screening intervals are appropriate. Design/methodology/approach – All adults with Down's syndrome in Plymouth (UK) are identified and offered a comprehensive test battery at baseline at the age of 20 and then have testing biennially from 40 to 50 and annually after 50. All individuals diagnosed with dementia between 2001 and 2013 were identified and their case notes examined. The symptoms at the time of diagnosis were identified and whether these symptoms had been identified through the screening programme or by other routes were recorded. Prevalence data and age at diagnosis were also recorded. Findings – In total, 26 people were diagnosed with dementia during the study period. Of these, the diagnosis of dementia followed concerns being identified during the routine screening programme in 54 per cent of cases. In the younger age group (age 40-49) 63 per cent of people were identified through the screening programme. At the time of diagnosis a mean of 5.5 areas of concern were in evidence. Research limitations/implications – Limited by small sample size, however service development not original research. Implications for the use of prospective dementia screening in people with Down's syndrome. Practical implications – Implications for how services choose to run their Down's syndrome and dementia screening programmes, including the frequency of screening. Originality/value – The paper adds to a growing evidence base around the value of prospective dementia screening in people with Down's syndrome. It is also one of a few studies exploring the frequency of screening. Additionally, it adds further data about prevalence of dementia in people with Down's syndrome.

BACKGROUNDPatient experience of those accessing mental health services has been found to be different between ethnic groups. Although the needs of people with intellectual disabilities (ID) from different ethnic communities are being increasingly recognised, little has been published about their experiences of mental health services. The aim of this study was to establish whether there are any differences in the experiences of people with ID and mental health problems from two ethnic communities in South London.METHODA two-round Delphi process was utilised. White British and Black or Black British service users from a specialist community-based mental health service for adults with ID completed a specially compiled questionnaire. Statements on participants' experiences, including satisfaction with care, staff members' attitudes, cultural awareness and level of support, were rated using a Likert scale.RESULTSTwenty-four out of 32 participants (75%) completed both rounds of the Delphi consultation. Consensus (≥80% agreement with the group median) was reached for 20 items in the White group and five items in the Black group. All responses that reached consensus were positive about the services that were being received. The Black group were less positive about a range of their experiences, including the use of medication.CONCLUSIONSPeople with ID from two ethnic groups were able to successfully complete a Delphi consultation regarding their experiences of mental health services. Broad consensus on positive experiences of services was reached in the White group but not for the Black participants.

Background Little has been published regarding the views of family members of people with intellectual disabilities who are being cared for in out-of-area psychiatric hospitals. This study explores this area with specific reference to whether culturally appropriate services were being provided. Materials and Methods Sixteen family members were interviewed about their views on the care their relative or partner was receiving in an out-of-area hospital. Transcripts were then analysed by the study team and themes identified. Results Families expressed a wide range of views regarding out-of-area hospital care. Important themes identified were feelings of shame, concerns about safety, cultural needs not being met, lack of improvement and lack of involvement in care. Conclusions This study highlights areas of inpatient care that family members felt were important. Views on negative aspects of care should guide areas for quality improvement initiatives for inpatient services.

The Deprivation of Liberty Safeguards are an extension to the Mental Capacity Act (2005). They provide protection for those who lack capacity to make a decision about residing in a hospital or care home and require a deprivation of their liberty. The following paper is a summary of the safeguards.

To investigate the possible role of molecular mimicry to bacterial components in multiple sclerosis (MS) pathogenesis we examined antibody responses to mimicry peptide sequences of Acinetobacter, Pseudomonas aeruginosa and myelin components. Antibodies to mimicry peptides from Acinetobacter (p<0.001), P. aeruginosa (p<0.001), myelin basic protein (MBP) (p<0.001) and myelin oligodendrocyte glycoprotein (MOG) (p<0.001) were significantly elevated in MS patients compared to controls. Antisera against MBP (residues 110-124) reacted with both Acinetobacter and Pseudomonas peptides from 4- and gamma-carboxymuconolactone decarboxylase, respectively. MOG (residues 43-57) antisera reacted with Acinetobacter peptide from 3-oxo-adipate-CoA-transferase subunit A. The role of these bacteria in MS is unclear but demonstrates that molecular mimicry is not restricted to viruses suggesting bacterial infections could play a role in MS pathogenesis. Further work is required to evaluate the relevance of these cross-reactive antibodies to the neuropathology of MS.

Antibody responses to Acinetobacter (five strains), Pseudomonas aeruginosa, Escherichia coli, myelin basic protein (MBP), and neurofilaments were measured in sera from 26 multiple sclerosis (MS) patients, 20 patients with cerebrovascular accidents (CVA), 10 patients with viral encephalitis, and 25 healthy blood donors. In MS patients, elevated levels of antibodies against all strains of Acinetobacter tested were present, as well as antibodies against P. aeruginosa, MBP, and neurofilaments, but not antibodies to E. coli, compared to the CVA group and controls. The myelin-Acinetobacter-neurofilament antibody index appears to distinguish MS patients from patients with CVAs or healthy controls. The relevance of such antibodies to the neuropathology of MS requires further evaluation.