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Introduction: Having a diagnosis of Down syndrome (DS) is associated with intellectual disability (ID), pervasive developmental disorders and Alzheimer's dementia (AD). The association between these conditions has not been well evaluated. This paper looks to examine the current evidence pertaining to the relationship between dementia in people with DS and severity of ID and the presence of pervasive developmental disorders. Methods: A scoping review using PRISMA guidance was undertaken. Medline, Cochrane database, NHS evidence, Trial registers and Open Grey were searched in December 2018 and an updated search was completed in July 2020. Three search strategies were used to retrieve articles relating to DS, dementia, pervasive developmental disorders (including autism, autism spectrum disorder (ASD) and attention-deficit hyperactivity disorder (ADHD)) and severity of ID. Studies were included if they met the pre-defined inclusion criteria of investigating an association between autism/ASD, ADHD, or severity of ID and the development of dementia in people with DS. Studies were excluded if they did not include primary data, if the population included non-Down causes of ID, or if no specific outcome measure related to comorbid autism/ASD, ADHD, or severity of ID and dementia in people with a diagnosis of DS were reported. There were no exclusions related to study design. Papers were assessed for quality using the Mixed Methods Appraisal Tool (MMAT). Results: The search identified 15 papers, publishing results from 12 studies, relating to severity of ID, DS and dementia. No papers were identified relating to pervasive developmental disorders, DS and dementia. There is limited evidence on how severity of ID impacts on the presentation, diagnosis, management or prognosis of dementia in people with DS. However, no evidence was found on comorbid pervasive developmental disorders, DS and dementia. Conclusion: This paper has identified multiple areas for future research. There is an urgent need for longitudinal studies into the presentation, development and progression of dementia in people with DS ensuring the severity of ID and comorbid pervasive developmental conditions are captured regularly to understand their influence on the dementia etiology and outcome.

Purpose: This paper is one of seven in this volume elaborating different approaches to quality improvement in education. This paper aims to delineate a methodology called Deliverology. Design/methodology/approach: The paper presents the origins, theoretical foundations, core principles and a case study showing an application of Deliverology in the Kentucky Department of Education in the USA. Findings: The core principles underlying the approach are embodied in its guiding questions: What is our system trying to do? How are we planning to do it? At any given moment, how will we know whether we are on track to succeed? and If we are not on track, what are we going to do about it? Originality/value: Few theoretical treatments and demonstration cases are currently available on commonly used models of quality improvement in other fields that might have potential value in improving education systems internationally. This paper fills this gap by elucidating one promising approach. The paper also derives value, as it permits a comparison of the Deliverology approach with other quality improvement approaches treated in this volume.

This study describes research that was designed to explore the reflections and perspectives of staff who had experienced the change from institutional care to person-centred care and learn what factors had supported the change to, and continued adoption of, person-centred care. In-depth, semistructured interviews were conducted with seven participants working in residential homes for people with learning disabilities. The interviews were analysed using interpretative phenomenological analysis. Participants described positive changes, for example they were able to offer choice and spend time with residents. They perceived the work as less pressured and more relaxed. For some, this had the impact of encouraging them to work harder and freeing up their time to facilitate forming relationships with residents in the homes. Participants discussed an increased autonomy, responsibility and accountability in their work and a sense of being constantly monitored. There appeared to be reluctance amongst participants to own difficulties and anxieties associated with changes. Participants identified a number of strategies and issues that they felt had supported these changes. The research suggests some areas of consideration for implications regarding future practice in staff support and training within services for people with learning disabilities.

It is well established that people with Down's syndrome are more likely to develop dementia than other people and that onset of dementia is likely to occur earlier at an earlier age. The article reports on a specialist service for people with Down's syndrome and dementia. The service has offered dementia screening and assessment to people with Down's syndrome for over 10 years and has also developed to offer support and training for carers. Semi-structured interviews were conducted with family carers, relatives and staff about the impact on them of caring for someone with Down's syndrome and how the dementia service supports them in this role. The resulting data were analysed using interpretative phenomenological analysis. The responses provide rich insights into the areas of "knowledge and information", "coping and support" and "concerns about the future". Interviewees also identified services they wanted for the future. As a result of this evaluation, a number of changes have been proposed and begun to be implemented within the service. The results have important implications for other health, social care and voluntary organisations. (Contains 4 tables.)

Background: The aim of the study was to explore the validity of the social-moral awareness test (SMAT) a measure designed for assessing socio-moral rule knowledge and reasoning in people with learning disabilities. Comparisons between Theory of Mind and socio-moral reasoning allowed the exploration of construct validity of the tool. Factor structure, reliability and discriminant validity were also assessed. Materials and Methods: Seventy-one participants with mild-moderate learning disabilities completed the two scales of the SMAT and two False Belief Tasks for Theory of Mind. Results: Reliability of the SMAT was very good, and the scales were shown to be uni-dimensional in factor structure. There was a significant positive relationship between Theory of Mind and both SMAT scales. Conclusions: There is early evidence of the construct validity and reliability of the SMAT. Further assessment of the validity of the SMAT will be required. (Contains 5 tables and 3 pictures.)

Following Beacroft & Dodd's (2009) audit of pain recognition and management within learning disability services in Surrey, it was recommended that learning disability services should receive training in pain recognition and management. Two hundred and seventy-five services were invited to participate, of which 197 services in Surrey accepted and attended pain training. This is a 72% attendance rate. Training covered pain thresholds, pain recognition and management, health action plans and medicines policies. At the end of training and at follow-up (3-5 months later), attendees were asked about their service's management of pain. At the follow-up, it was found that significantly more services were using communication tools such as picture scales [Dodd & Brunker (1999) "Feeling Poorly". Brighton, Pavilion Publishing] and more pain recognition tools such as the Abbey pain scale [Abbey "et al." (2004) "Int J Palliat Nurs", 10, 6-13] and the Disability Distress Assessment Tool [Regnard "et al." (2007) "J Intellect Disabil Res", 51, 277-292]. Use of pain management strategies did not change significantly. There was a significant increase in the number of services including information on how a person displays pain, the possible causes of pain and how a person likes their pain managed in their health action plan. More services were now reviewing health action plans at least 6 monthly and sharing them with other services that the person with learning disabilities uses. Significantly more services' medicine policies now specifically mention pain.

An audit was conducted across Surrey to investigate pain recognition and management with people with learning disabilities. This section of the audit looked at what people with learning disabilities understood and experienced when they had pain compared to good practice from the literature. The results show that people with learning disabilities struggle to discuss pain effectively, and that little use is made of additional communication aids. People with learning disabilities rely on others to deal with their pain, but may not tell people that they are in pain. The most common response to having pain is to go to the doctors, and many people were not offered pain medication by staff. It was also reported that other alternative strategies were not used to manage pain. Although most people did not make the decision as to whether they needed to see their doctor, most people knew who their doctor was and reported good experiences in terms of information sharing once at the appointment. Further work has since been undertaken in Surrey to address the concerns raised in this audit through the development of information booklets on pain recognition and management for people with learning disabilities and for staff and family carers, together with the development and roll out of pain training.

This audit investigated residential staff beliefs around pain thresholds and strategies they adopt to recognise and manage pain in people with learning disabilities across Surrey. A structured interview was constructed to elicit information. Results demonstrated that pain is not being effectively recognised or managed by residential staff in Surrey. It highlighted the need for training for staff in how to recognise and manage pain, as well as the need for appropriate pain recognition tools and communication aids to be utilised to support people with learning disabilities to be able to communicate their pain to others. It also indicated the need for better communication between staff and other services that the person with learning disabilities accesses.

This paper is a narrative analysis of the accounts of six older people with Down's syndrome who spent part of their childhood in institutional environments. The study aimed to find out how the participants talked about themselves. Different types of narrative analysis were used, including those of Murray ("Qualitative psychology: a practical guide to research methods," London, UK, Sage, 2003), Gergen & Gergen ("Hist Social Psychol," Hillsdale, NJ, Erlbaum, 1984) and Labov & Waletsky ("Essays on the verbal and visual arts," Seattle, University of Washington Press, 1967). All of the participants spoke about their childhood, current and future lives. Most participants were able to reflect upon their strengths, limitations and hopes. The analysis highlighted the commonalities across the accounts: loss, abuse, health, significant others, transition, resilience and identity. Significantly, none of the participants identified themselves as having "Down's syndrome" or a "learning disability," nor did they identify with being "older." Instead, individuals identified themselves in relation to gender and social roles. The accounts varied in terms of their form, structure, coherence and reflexive capacity. Clinical implications are discussed.

Our pilot study investigated if children with Down syndrome engaged in the recommended 60 min of moderate to vigorous physical activity (MVPA) every day. Twenty-three children with Down syndrome (7 girls, 16 boys; mean age 11.7 years, SD = 3.1) wore a triaxial accelerometer for 7 consecutive days to measure their activity levels. The average daily MVPA undertaken was 104.5 min (SD = 35.3 min). Only 8 of 19 children (42.1%) completed at least 60 min of MVPA each day. Lower amounts of activity were associated with older children (r = -0.67, p less than 0.01). Parents, teachers, and health professionals need to encourage children with Down syndrome to take part in more frequent MVPA. (Contains 1 table and 2 figures.)

The aim of this study was to investigate the participation of children with cerebral palsy (CP) in activities outside school and to compare their participation with a large representative sample of children. A population-based survey was conducted of children with CP born in Victoria, Australia in 1994 and 1995. Of 219 living children identified, 114 (52.1%) returned completed surveys. The children (65 males, 49 females) were aged between 10 years 9 months and 12 years 9 months (mean age 11y 9mo, SD 6mo). Thirty-eight per cent had hemiplegia, 23% diplegia, 4% triplegia, 34% quadriplegia, and 1% was of unknown topography. Distribution according to the Gross Motor Function Classification System (GMFCS) was 22.8% Level I, 36% Level II, 10.5% Level III, 8.8% Level IV, and 21.9% Level V. Distribution according to the Manual Ability Classification System (MACS) was: 19.3% Level I, 38.6% Level II, 14.0% Level III, 8.8% Level IV, and 19.3% Level V. Participation was measured using the Children's Assessment of Participation and Enjoyment. Participation in selected sport, cultural, and quiet leisure activities was compared with population-based data for 11-year-olds from the Australian Bureau of Statistics. Children with CP undertook a median of 26.5 activities (interquartile range 10) in 4 months which were commonly informal rather than formal. Intensity of participation was low. Diversity and intensity of participation was similar for children in each level of the MACS and the GMFCS, except for participants in Level V. More children with CP participated in organized sports (p less than 0.001) compared with other Australian children, although with lower frequency (p less than 0.001). Participation diversity and level of intensity of Australian children with CP were similar to those reported in a Canadian study.

To explore the effects that impaired ability to sit-to-stand has on upright mobility and self-care in children with cerebral palsy and how this in turn may affect their caregivers. A mixed methods research design was conducted with 25 children who had cerebral palsy with moderate to high mobility limitations (GMFCS levels III and IV) and their caregivers. Caregivers were interviewed about their child's mobility and self-care. The independence of each child's activities was rated using the mobility and self-care domains of the Functional Independence Measure for Children (WeeFIM). Two themes were identified from qualitative analyses: Difficulty in sit-to-stand was perceived by caregivers to reduce their child's ability to independently and safely perform mobility and some self-care tasks; and negatively impacted the caregivers physically and psychologically. Mobility and self-care WeeFIM scores showed that these children required moderate assistance, and that self-care tasks involving sit-to-stand (toileting and bathing) required more assistance than self-care tasks that would not be expected to involve sit-to-stand (eating and grooming). Qualitative and quantitative findings were convergent. The ability to sit-to-stand independently may be an important precursor skill for independence in upright mobility and self-care for children with moderate to severe mobility limitations. [ABSTRACT FROM AUTHOR]