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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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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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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Background: Persons with an intellectual disability are at increased risk of experiencing adversities. The current study aims at providing an overview of the research on how resilience in adults with intellectual disabilities, in the face of adversity, is supported by sources in their social network. Method: A literature review was conducted in the databases Psycinfo and Web of Science. To evaluate the quality of the included studies, the Mixed Method Appraisal Tool (MMAT) was used. Results: The themes: “positive emotions,” “network acceptance,” “sense of coherence” and “network support,” were identified as sources of resilience in the social network of the adults with intellectual disabilities. Conclusion: The current review showed that research addressing sources of resilience among persons with intellectual disabilities is scarce. In this first overview, four sources of resilience in the social network of people with intellectual disabilities were identified that interact and possibly strengthen each other.
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Background: During COVID-19 measures face-to-face contact is limited and professional carers have to find other ways to support people with intellectual disabilities. COVID-19 measures can increase stress in people with intellectual disabilities, although some people may adapt to or grow from these uncertain situations. Resilience is the process of effectively negotiating, adapting to, or managing significant sources of stress and trauma. The current study aims to provide professional carers with new insights into how they can support people with intellectual disabilities. Method: An online survey was shared through the social media and organizational newsletters of MEE ZHN (a non-governmental organization for people with disabilities). The resilience framework by Ungar (2019) was adapted to fit to people with intellectual disabilities during COVID-19 measures. Statistical analyses were performed in SPSS statistics version 26. Results: Results show that professional carers applied diverse and distal methods to maintain contact with people with intellectual disabilities during the COVID-19 measures. Professional carers reported a significant decrease in the quality of contact with clients with intellectual disabilities, but overall high levels of resilience in the same clients. Implications: Online methods of communication are possibly insufficient for professionals to cover all needs of people with intellectual disabilities. During this pandemic professionals should be aware of stress but also of resilience in people with intellectual disabilities.
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The ageing of people with intellectual disabilities, with associated morbidity like dementia, calls for new types of care. Person-centered methods may support care staff in providing this, an example being Dementia Care Mapping (DCM). DCM has been shown to be feasible in ID-care. We examined the experiences of ID-professionals in using DCM. We performed a mixed-methods study, using quantitative data from care staff (N = 136) and qualitative data (focus-groups, individual interviews) from care staff, group home managers and DCM-in-intellectual disabilities mappers (N = 53). ageing, dementia, Dementia Care Mapping, intellectual disability, mixed-methods, personcentred care
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Abstract Background People with epilepsy and mild intellectual disability have a limited adaptive capacity resulting in difficulties in communication and social skills. Virtual Reality (VR) has the potential to help this group of people to learn how to manage difficult situations. SEIN (Expertise Center for Epilepsy) provides training to the residents to improve their social and communication skills. The purpose of the exploratory study was to establish whether VR could be a suitable digital means to provide a more efficient blended training. Methods Online interviews were conducted with healthcare professionals from SEIN: two coordinators, three psychologists and two coaches. The participants were asked about their ideas for improving the social skills of the residents and their view on using VR to do so. Interviews were recorded, transcribed and analyzed using thematic analysis approach. In addition, observations were conducted during a training session to get a realistic sense of its process and contents. Observations were noted in a logbook. Findings The participants are positive to use VR in the training but point out that it is not suitable for all the residents. VR glasses were ruled out because it put the resident alone in a virtual setting. VR with a tablet is preferred to allow the residents and the healthcare professional to simultaneously view 3D simulated situations and allowing opportunities to talk about it. The development of VR contents and simulations using tablet will need to take into account relevant VR guidelines dedicated to people with epilepsy. Appropriate training for the healthcare professionals also needs to be provided. Conclusions The use of Virtual Reality in training programs to improve communication and social skills of adults with intellectual disabilities and epilepsy is promising, We advocate to utilize user-centered design and co-creation approaches with all concerned parties for further development of tablet-based VR solutions
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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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Background: Adverse Childhood Experiences (ACEs) are an overlooked risk factor for behavioural, mental and physical health disparities in children with intellectual disabilities (ID) and borderline intellectual functioning (BIF). Aims: To gain insight into the presence of the 10 original Wave II ACEs and family context risk variables in a convenience sample of children with ID and BIF in Dutch residential care. Methods and procedures: 134 case-files of children with ID (n = 82) and BIF (n = 52) were analysed quantitatively. Outcomes and results: 81.7 % of the children with ID experienced at least 1 ACE, as did 92.3 % of the children with BIF. The average number of ACEs in children with ID was 2.02 (range 0???? 8) and in children with BIF 2.88 (range 0???? 7). About 20 % of the children with moderate and mild ID experienced 4 ACEs or more. Many of their families faced multiple and complex problems (ID: 69.5 %; BIF 86.5 %). Multiple regression analysis indicated an association between family context risk variables and the number of ACEs in children. Conclusions and implications: The prevalence of ACEs in children with ID and BIF appears to be considerably high. ACEs awareness in clinical practice is vital to help mitigate negative outcomes.
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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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