Introduction: Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments. Methods: Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in Down Syndrome II scale, Dementia Questionnaire for persons with Mental Retardation and Social competence Rating scale for people with Intellectual Disabilities. Results: Among 193 items, 101 items were found applicable, categorized in 5 domains: behavioral and psychological functioning (60 items), cognitive functioning (25), motor functioning (6), activities of daily living (5) and medical comorbidities (5). Conclusion: Identifying applicable items for people with SPI(M)D is an essential step in developing a dedicated dementia screening instrument for this population.
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Background Anxiety and challenging behaviour (CB) often occur simultaneously in people with intellectual disabilities (ID). Understanding the associations between anxiety and CB may contribute to more accurate diagnoses and management of both anxiety and CB in this population. Aims To examine the relationship between anxiety and CB. Methods A literature review covering the period from January 2000 to January 2012. Results Seven studies about the relationship between psychiatric disorders, including anxiety, and CB were identified. These studies confirm the relationship between anxiety and CB in people with ID, although the precise nature of this relationship remains unclear. Conclusions The study points toward the existence of a moderate association between anxiety and CB. Further research is needed to clarify the complex nature of the association between anxiety and CB.
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The SEDY2 project is a three-year follow-up project (2020-2022) funded through the European Union (Erasmus+). The goal of the project is to encourage inclusion and equal opportunities in sport for children and youth with disabilities. This toolkit is aimed at people involved in educating students or volunteers on inclusion in sport for young people with disabilities, who are managing, working in a sports club or involved in the development of sports policy. They could be a volunteer, a coach, a club member or a policy maker. Inclusion in its simplest form is defined as the state of being included. In an inclusive club, every participant is welcomed, accepted, and feels that they belong. However, the needs of young people with disabilities are often unmet. Young people with disabilities have fewer opportunities to participate in quality sport activities. The goal of this toolkit is to support educators to facilitate and promote disability inclusion among mainstream sport providers through education, using the educational materials and sharing best practices and inclusive ideas from SEDY2 project.
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Aim: The degree to which people with intellectual and visual disabilities can use technology relies on the level of support they receive. However, there is a lack of knowledge about the relationship between the constructs effort expectancy, attitudes, and behavioural intentions of support people (i.e. relatives and healthcare professionals) regarding the use of such technologies for people with intellectual and visual disabilities. The aim of this study was to gain insight into how these constructs are connected and to explore their relationship with support person’s characteristics and the support need levels of people with intellectual and visual disabilities. Methods: In total, 186 support people from a Dutch healthcare organisation focusing on people with intellectual and visual disabilities participated in an online questionnaire. We used a regression analysis to explore how the constructs, the characteristics, and the level of support needs were related. Results: Both effort expectancy (β =.35; t(185) = 5.04; p
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This article describes a European project which was aimed at improving the situation of persons with psychiatric or learning disabilities with regard to social participation and citizenship. The project took place in three countries (Estonia, Hungary and the Netherlands) and four cities (Tallinn, Budapest, Amersfoort and Maastricht). The project included research and actions at the policy level, the organizational level and the practice level. At the policy level, the framework of the United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006) and the European Disability Strategy (European Commission, 2010) were used to look at national and local policies, at the reality of the lives of those with disabilities and at the support that professional services offer with regard to participation and inclusion. The project generated a number of insights, recommendations and methods by which to improve the quality of services and increase the number of opportunities for community engagement. In this article, we present some of the lessons learned from the meta-analysis. Although the circumstances in each country are quite different with regard to policy, culture and service systems, it is remarkable that people with disabilities face many of the same problems. The study shows that in all three countries, access to services could be improved. Barriers include bureaucratic procedures and a lack of services. The research identified that in every country and city there are considerable barriers regarding equal participation in the field of housing, work and leisure activities. In addition to financial barriers, there are the barriers of stigma and self-stigmatization. Marginalization keeps people in an unequal position and hinders their recovery and participation. In all countries, professionals need to develop a stronger focus on supporting the participation of their clients in public life and in the development of different roles pertaining to citizenship
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BACKGROUND: There is no widely used instrument to detect frailty in people with intellectual disabilities (IDs). We aimed to develop and validate a shorter and more practical version of a published frailty index for people with IDs.METHOD: This study was part of the longitudinal 'Healthy Ageing and Intellectual Disability' study. We included 982 people with IDs aged 50 years and over. The previously developed and validated ID-Frailty Index consisting of 51 deficits was used as the basis for the shortened version, the ID-FI Short Form. Content of the ID-FI Short Form was based on statistics and clinical and practical feasibility. We evaluated the precision and validity of the ID-FI Short Form using the internal consistency, the correlation between the ID-FI Short Form and the original ID-Frailty Index, the agreement in dividing participants in the categories non-frail, pre-frail and frail, and the association with survival.RESULTS: Seventeen deficits from the original ID-Frailty Index were selected for inclusion in the ID-FI Short Form. All deficits of the ID-FI Short Form are clinically and practically feasible to assess for caregivers and therapists supporting people with ID. We showed acceptable internal consistency with Cronbach's alpha of 0.75. The Pearson correlation between the ID-Frailty Index and the ID-FI Short Form was excellent (r = 0.94, P < 0.001). We observed a good agreement between the full and short forms in dividing the participants in the frailty categories, with a kappa statistic of 0.63. The ID-FI Short Form was associated with survival; with every 1/100 increase on the ID-FI Short Form, the mortality probability increased by 7% (hazard ratio 1.07, P < 0.001).CONCLUSION: The first validation of the ID-FI Short Form shows it to be a promising, practical tool to assess the frailty status of people with ID.
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The current study analyzed blogs written by four Dutch parents of children with profound intellectual and multiple disabilities, with the aim of deepening the understanding of the parents’ concerns. Thematic analysis was conducted and five main themes were identified: Dealing with uncertainties addressed the impact of unpredictability present in the everyday lives of parents, Love and loss described the complexity of concurrently cherishing the child and grieving various types of loss, Struggling with time, energy and finances detailed imbalances and struggles related to parents’ personal resources, Feeling included in communities and society specified social consequences, and Relating to professional care services reflected on stress and support associated with professional care delivery. The study findings demonstrate how care professionals should acknowledge parents’ vulnerabilities by being aware of their existential distress and empowering parents to exercise control of family thriving.
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Abstract Background: Although there is little evidence on their efficacy regarding challenging behaviour, antipsychotics are the most used psychotropic drugs in residential intellectually disabled people. Discontinuation is possible for some residential clients with intellectual disabilities. This study aimed to gain insight into support staff's perceptions of discontinuing antipsychotics in residential clients with intellectual disabilities. Method: Four focus groups were conducted in this mixed‐methods study, followed by a survey. Results: A large majority of support staff perceive antipsychotics to be effective in controlling challenging behaviour. Support staff regarded themselves as willing to contribute to the discontinuation of antipsychotics, but were more confident about achieving reductions. Conclusions: The attitude of the majority of support staff towards discontinuation provides a good basis for regularly reviewing antipsychotics use. A reduction plan should include preliminary steps, methods of monitoring and evaluating the process, and establishing measures for dealing with possible crises.
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To analyze the intervention components, levels of influence, explicit use of theory, and conditions for sustainability of currently used lifestyle interventions within lifestyle approaches aiming at physical activity and nutrition in healthcare organizations supporting people with Intellectual Disabilities (ID).
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People with disabilities (PWDs) face discrimination in the hospitality workplace. The aim of this paper is therefore to frame issues surrounding the employment of PWDs in the hospitality industry in normative ethical terms. To achieve this aim, we conducted twenty-eight semi-structured interviews with owners/managers of hospitality businesses and other relevant stakeholders. Drawing on the ethics of justice and ethics of care, our study found that when organisations demonstrated to their employees and other stakeholders the fairness in the procedures taken to implement PWD inclusion actions, the inclusion actions were significantly supported by coworkers, and the organisations were able to achieve distributive justice and care for PWDs. This study, thus, demonstrated that organisational members were willing to take part in caring actions for employees with disabilities (EWDs) not only when they perceived that inclusion actions for EWDs were procedurally fair, but also when they perceived that the PWDs deserved distributive justice outcomes.
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