Jennifer Torr

International guide to prescribing psychotropic medication for the management of problem behaviours in adults with intellectual disabilities.

Psychotropic medications are used regularly to manage problem behaviours among people with intellectual disabilities. This causes concern because often these medications are used out of their licensed indications in this context. The WPA Section on Psychiatry of Intellectual Disability has recently developed an evidence and consensus-based international guide for practitioners for the use of psychotropic medications for problem behaviours among adults with intellectual disabilities. This guide advises on assessment of behaviours, producing a formulation, initiation of treatment, assessment of out-come and adverse effects, follow-up arrangements, and possibility of discontinuation of treatment.

Relationships amongst age, language and related skills in adults with Down syndrome

Studies into the effects of ageing on language in adults with Down syndrome (DS) have tended to rely on measures that lack sensitivity to change because they fail to explore across linguistic domains or rely on proxy reports. The study aim was to use measures of receptive and expressive language from studies of younger individuals with DS in exploring relationships across linguistic and associated skills, and age in young to older adults. Fifty-five adults (aged 19-58 years), 10 with a diagnosis of or signs of early stage Alzheimers Disease (AD), provided data on measures of functioning associated with AD, non-verbal cognition, receptive language (which provided a measure of mental age), receptive and expressive language, and short term auditory and visual memory. The first order correlation between the measure of AD and CA was significant; but not when the 10 participants with AD were removed from the analysis. Significant negative correlations were obtained between CA and all other measures; small to large significant positive correlations were found amongst the other measures. Partial correlations were conducted to remove the potential effects of AD and IQ (the latter measured by a test of non-verbal cognition). Remaining significant correlations were between auditory short term memory and all other included measures, expressive language and all other included measures, and CA and auditory short term memory and expressive language. The results indicate that deterioration with age in this cross-sectional study was accounted for largely by the presence of AD. The exceptions were for auditory short term memory and expressive language. The findings may reflect an underlying deficit in auditory short term memory for adults with DS, as has been found in previous research of children and adolescents. The implications are discussed in terms of the importance of including comprehensive measures of receptive and expressive language and the need to account for the presence of AD in studies of cognitive decline associated with ageing in DS.

Psychiatric care of adults with intellectual disabilities: changing perceptions over a decade.

Objective: In light of developments in training and service provision, the aim of the present study was to compare two state-wide surveys, undertaken in 1994 and in 2004, of psychiatrists about their perceptions of their training and psychiatric treatment of adults with intellectual disabilities who also have mental health needs. Methods: A 50-item self-administered questionnaire was developed for the 2004 survey, based on the 1994 study. This was sent to all 624 Fellows of the Royal Australian and New Zealand College of Psychiatry registered in Victoria at the time. A series of questions was asked based on workload, training, the role of psychiatry in intellectual disabilities, opinions on assessment and management, improving services, and the demographics of participant psychiatrists. Results of the 2004 survey are compared with the 1994 study. Results: There has been some change in psychiatrists’ opinions about acute admission wards, believing strongly that they do not meet the needs of the adults with severe intellectual disabilities, leaving them vulnerable to exploitation. There has been some improvement in their ability to adequately manage adults with intellectual disabilities who have mental health needs and/or problem behaviours. Conclusions: Mainstream mental health services fail to meet the needs of adults with intellectual disabilities. Improved specialist clinical services and more clinical training opportunities are required.

Taking each day as it comes: staff experiences of supporting people with Down syndrome and Alzheimer's disease in group homes

BACKGROUND Disability staff are being increasingly required to support adults with Down syndrome who develop Alzheimers disease. They have little understanding of the nature of care required, and may lack input from aged care and dementia services, which lack knowledge of intellectual disability. The aim of this study was to report on the experiences of disability staff in group homes supporting residents with Down syndrome and Alzheimers disease in relation to their under understanding of what was happening to these residents, their responses to them, and how they felt about their support role. METHOD Disability support staff for nine adults with Down syndrome who had a diagnosis of Alzheimers disease were interviewed twice, over intervals of 6-9 months. Interviews were transcribed and analysed for themes. RESULTS Three key themes emerged - (i) struggling to understand change, (ii) taking each day as it comes, and (iii) hes got a disability and thats our job. CONCLUSIONS Staff had only limited understanding of how Alzheimers disease impacted the adults with Down syndrome, their responses to changes were ad hoc, and they used strategies on a trial and error basis. They were committed to providing care, but at the risk of rejecting input and support. The need for collaboration across disability, and aged and disability care was evident to facilitate aging-in-place and planned care transitions.

Training on intellectual disability in health sciences: the European perspective

Abstract Background: Intellectual disability (ID) has consequences at all stages of life, requires high service provision and leads to high health and societal costs. However, ID is largely disregarded as a health issue by national and international organisations, as are training in ID and in the health aspects of ID at every level of the education system. Specific aim: This paper aims to (1) update the current information about availability of training and education in ID and related health issues in Europe with a particular focus in mental health; and (2) to identify opportunities arising from the initial process of educational harmonization in Europe to include ID contents in health sciences curricula and professional training. Method: We carried out a systematic search of scientific databases and websites, as well as policy and research reports from the European Commission, European Council and WHO. Furthermore, we contacted key international organisations related to health education and/or ID in Europe, as well as other regional institutions. Results: ID modules and contents are minimal in the revised health sciences curricula and publications on ID training in Europe are equally scarce. European countries report few undergraduate and graduate training modules in ID, even in key specialties such as paediatrics. Within the health sector, ID programmes focus mainly on psychiatry and psychology. Conclusion: The poor availability of ID training in health sciences is a matter of concern. However, the current European policy on training provides an opportunity to promote ID in the curricula of programmes at all levels. This strategy should address all professionals working in ID and it should increase the focus on ID relative to other developmental disorders at all stages of life.

Checklists for general practitioner diagnosis of depression in adults with intellectual disability.

BACKGROUND In Australia, diagnosis and management of depression in adults with intellectual disability (ID) often occurs within the primary care setting. Few tools are available to assist general practitioners (GPs) in the diagnostic process. The study aim was to assess properties of carer and GP checklists developed to address this problem. METHOD Participants were 49 adults with ID and their paid carers (support workers), and GPs for 27 adults. Data from carer and GP checklists were gathered, in addition to carer completed Developmental Behaviour Checklist-Adults (DBC-A). Adults with ID also received a comprehensive psychiatric assessment. RESULTS Both checklists demonstrated good internal consistency (KRS-20 = 0.90). A factor analysis of the carer checklist indicated a single factor on which three section totals had loadings of greater than 0.722 (depressed mood, loss of interest, and social interaction and communication). This factor was interpreted to be depression. The GP checklist data were insufficient for factor analysis, but section totals were moderately correlated with most corresponding carer checklist section totals. Carer section totals related to depression also correlated highly with the DBC-A Depression sub-scale, demonstrating good concurrent validity. Contrasting results were obtained for the GP checklist. Most (n = 42) of the participants were diagnosed with a psychiatric disorder, precluding the testing of checklist specificity and sensitivity. CONCLUSION The carer checklist shows promise as a means of gathering information needed by a GP in the diagnosis of depression in adults with ID. Further research into its underlying properties and clinical uses of a combined depression checklist is warranted.

Intellectual Disability and Mental Ill Health: A View of Australian Research

This general review situates Australian research within a framework that quantifies and describes mental health needs of the population with intellectual disabilities across the life span, surveys service provision, and develops the evidence base to inform clinicians regarding assessment and management of psychopathology and psychiatric disorder in people with intellectual disabilities. In particular, Australian research has examined the prevalence, nature, associated factors, and trajectory of clinically significant psychopathology from childhood to adulthood. The Developmental Behavior Checklist and a suite of versions, including an adult version, have proven to be robust instruments in identifying and describing psychopathology in people with intellectual disabilities. Australian researchers have also examined aspects of psychiatric assessment in a population with cognitive and communication impairments, which has direct relevance to clinical practice. Surveys and audits of policy, real-life practice, and service structure and provision have identified serious deficiencies in the training of health professionals and the provision of mental health care to people of all ages with intellectual disabilities and mental ill health. In light of the weight of the evidence, state and federal governments are developing new service models and there are increasing opportunities for professional education and training.

Experiences of supporting people with Down syndrome and Alzheimer's disease in aged care and family environments

Abstract Background Research addressing the experiences of families of adults with Down syndrome and Alzheimers disease in seeking diagnosis and gaining support is limited. The aim of this study was to gain a greater understanding of these processes by exploring the experiences of families and carers in supporting people with Down syndrome and Alzheimers disease who had lived most or all of their lives with family. Method Three detailed case studies were created from multiple data sources, and then analysed thematically. Results Families of adults with Down syndrome experienced stress and confusion as they negotiated a service system poorly equipped to meet their needs and professionals more focused on longstanding disability than the recent diagnosis of Alzheimers disease. Such overshadowing led to mismanagement by services. Conclusions This research advances understandings of the support needs of people with Down syndrome and Alzheimers disease and their families. It exposes gaps in the service system.

Professional training for those working with people with intellectual disabilities and mental health problems

• Many, and in some countries most, health care professionals receive little training in the assessment, treatment and management of mental health problems in people with ID. • In the UK, ID is a compulsory component of the training of psychiatrists. This is not the case in the USA, Canada, Australia and Austria. • ID is included in some training programmes for psychologists, but clinical experience in the field is less available, is optional and usually post-qualifications. • Primary car physicians in all the countries reviewed receive little or no exposure to the health care needs of people with ID, including mental health, at both an undergraduate and postgraduate level. • Positive developments in training were evident in all the countries reviewed. these often are linked to charismatic individuals who pioneer the initiatives. • An infrastructure is necessary to support training, including national standards of care for people with ID and mental health problems, to drive accreditation and certification of courses, together with secure career paths.

Central nervous system medication use in older adults with intellectual disability: Results from the successful ageing in intellectual disability study

Objective: Information on the rates and predictors of polypharmacy of central nervous system medication in older people with intellectual disability is limited, despite the increased life expectancy of this group. This study examined central nervous system medication use in an older sample of people with intellectual disability. Methods: Data regarding demographics, psychiatric diagnoses and current medications were collected as part of a larger survey completed by carers of people with intellectual disability over the age of 40 years. Recruitment occurred predominantly via disability services across different urban and rural locations in New South Wales and Victoria. Medications were coded according to the Monthly Index of Medical Specialties central nervous system medication categories, including sedatives/hypnotics, anti-anxiety agents, antipsychotics, antidepressants, central nervous system stimulants, movement disorder medications and anticonvulsants. The Developmental Behaviour Checklist for Adults was used to assess behaviour. Results: Data were available for 114 people with intellectual disability. In all, 62.3% of the sample was prescribed a central nervous system medication, with 47.4% taking more than one. Of those who were medicated, 46.5% had a neurological diagnosis (a seizure disorder or Parkinson’s disease) and 45.1% had a psychiatric diagnosis (an affective or psychotic disorder). Linear regression revealed that polypharmacy was predicted by the presence of neurological and psychiatric diagnosis, higher Developmental Behaviour Checklist for Adults scores and male gender. Conclusion: This study is the first to focus on central nervous system medication in an older sample with intellectual disability. The findings are in line with the wider literature in younger people, showing a high degree of prescription and polypharmacy. Within the sample, there seems to be adequate rationale for central nervous system medication prescription. Although these data do not indicate non-adherence to guidelines for prescribing in intellectual disability, the high rate of polypharmacy and its relationship to Developmental Behaviour Checklist for Adults scores reiterate the importance of continued medication review in older people with intellectual disability.