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 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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This project aims to develop a measurement tool to assess the inclusivity of experiences for people with varying challenges and capabilities on the auditory spectrum. In doing so, we performed an in-depth exploration of scientific literature and findings from previous projects by Joint Projects. Based on this, we developed an initial conceptual model that focuses on sensory perception, emotion, cognition, and e[ort in relation to hearing and fatigue. Within, this model a visitor attraction is seen as an “experienscape” with four key elements: content, medium, context, and individual. In co-creative interviews with experts by experience with varying challenges on the auditory spectrum, they provided valuable insights that led to a significant expansion of this initial model. This was a relevant step, as in the scientific and professional literature, little is known about the leisure experiences of people with troubled hearing. For example, personal factors such as a person’s attitude toward their own hearing loss and the social dynamics within their group turned out to greatly influence the experience. The revised model was then applied in a case study at Apenheul, focusing on studying differences in experience of their gorilla presentation amongst people with varying challenges on the auditory spectrum.Societal issueThe Netherlands is one of the countries in Europe with the highest density of visitor attractions. Despite this abundance, many visitor attractions are not fully accessible to everyone, particularly to visitors with disabilities who sometimes are not eligible to ride due to safety concerns, yet when eligible generally still encounter numerous barriers. Accessibility of visitor attractions can be approached in various ways. However, because the focus often lies on operational and technical aspects (e.g., reducing stimuli at certain times of the day by turning o[ music, o[ering alternative wheelchair entrances), strategic and community-focused approaches are often overlooked. More importantly, there is also a lack of attention to the experience of visitors with disabilities. This becomes apparent from several studies from Joint Projects, where visitor attractions are being visited together with experts by experience with various disabilities. Nevertheless, experience is often being regarded as the 'core product' of the leisure sector. The right to meet, discover, develop, relax and thus enjoy this core product is hindered for many people with disabilities due to a lack of knowledge, inaccessibility (physical, digital, social, communicative as well as financial) and discrimination in society. Additionally, recreation entrepreneurs still face a significant gap in reaching the potential market of guests with disabilities and their networks. Thus, despite the numerous initiatives in the leisure sector aimed at improving accessibility on technical and operational fronts, often people with disabilities are still not being able to experience the same kind of enjoyment as those without. These observations form the pressing impetus for initiating the current research project, tapping into the numerous opportunities for learning, development and growth on making leisure offer more inclusive.Benefit to societyIn total, the current project approach comes with a number of enrichments in terms of both knowledge and methodology: a mixed-methods approach that allows for comparing data from different sources to obtain a more complete picture of the experience; a methodological co-design process that honours the 'nothing about us without us' principle; and benchmarking for a group (i.e., people with challenges on the auditory spectrum) that despite the size of its population has thus far mostly been overlooked.
Op een waardige manier deelnemen aan en deel zijn van het maatschappelijk leven is niet altijd even makkelijk als je een beperking hebt. Het onderzoek van Jeroen Knevel is erop gericht bij te dragen aan de levenskwaliteit van mensen die belemmeringen ervaren. Zijn onderzoek doet hij samen met de praktijk en laat hij in allerlei creatieve en speelse vormen terugkomen in het onderwijs.
Psychosocial problems related to social isolation are a growing issue for wellbeing and health and have become a significant societal problem. This is especially relevant for children and adults with chronic illnesses and disabilities, and those spending extended periods in hospitals or permanently living in assisted living facilities. A lack of social relationships, social connectivity, and the inability to travel freely leads to feelings of isolation and loneliness. Loneliness interventions often use mediated environments to improve the feeling of connectedness. It has been proven that the utilization of haptic technologies enhances realism and the sense of presence in both virtual environments and telepresence in physical places by allowing the user to experience interaction through the sense of touch. However, the technology application is mostly limited to the experiences of serious games in professional environments and for-entertainment-gaming. This project aims to explore how haptic technologies can support the storytelling of semi-scripted experiences in VR to improve participants’ sense of presence and, therefore, the feeling of connectedness. By designing and prototyping the experience, the project aims to obtain insights and offer a better understanding of designing haptic-technology-supported storytelling and its potential to improve connectedness and become a useful tool in isolation interventions. The project will be conducted through the process of participants’ co-creation.
