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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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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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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Objective: To predict mortality by disability in a sample of 479 Dutch community-dwelling people aged 75 years or older. Methods: A longitudinal study was carried out using a follow-up of seven years. The Groningen Activity Restriction Scale (GARS), a self-reported questionnaire with good psychometric properties, was used for data collection about total disability, disability in activities in daily living (ADL) and disability in instrumental activities in daily living (IADL). The mortality dates were provided by the municipality of Roosendaal (a city in the Netherlands). For analyses of survival, we used Kaplan–Meier analyses and Cox regression analyses to calculate hazard ratios (HR) with 95% confidence intervals (CI). Results: All three disability variables (total, ADL and IADL) predicted mortality, unadjusted and adjusted for age and gender. The unadjusted HRs for total, ADL and IADL disability were 1.054 (95%-CI: [1.039;1.069]), 1.091 (95%-CI: [1.062;1.121]) and 1.106 (95%-CI: [1.077;1.135]) with p-values <0.001, respectively. The AUCs were <0.7, ranging from 0.630 (ADL) to 0.668 (IADL). Multivariate analyses including all 18 disability items revealed that only “Do the shopping” predicted mortality. In addition, multivariate analyses focusing on 11 ADL items and 7 IADL items separately showed that only the ADL item “Get around in the house” and the IADL item “Do the shopping” significantly predicted mortality. Conclusion: Disability predicted mortality in a seven years follow-up among Dutch community-dwelling older people. It is important that healthcare professionals are aware of disability at early stages, so they can intervene swiftly, efficiently and effectively, to maintain or enhance the quality of life of older people.
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Background: Experiencing flow, an optimal psychological state, can support health and well-being. A developmental perspective on flow so far examines strategies to facilitate these experiences in the face of developmental losses such as ageing. People with disabilities experience restrictions in participation and thus fewer occupations that potentially induce flow. Therefore, contributions to this perspective can be gained from disabled people’s experiences. Thus, this meta-study synthesises qualitative research literature to determine the contribution to a developmental perspective on flow in people with disabilities. Methods: Following a systematic search of four databases (PsycInfo (EBSCO), PubMed, CINAHL (EBSCO), Scopus) 10 qualitative, peer-reviewed studies were included, and critically appraised. Findings as well as methodologies, and underlying theories were analysed and synthesised. Findings: Various methodologies have been used to explore flow experiences of people with disabilities. Incongruencies between underlying theories and chosen methods, as well as lack of researcher reflexivity impacted the trustworthiness of some studies. All studies originated within occupational therapy research and were located in the global North, implying assumptions about occupation and well-being and a rehabilitation framework. The individuals’ choice and control, and adaptations of environment and occupation emerged from the meta-synthesis as important factors to experiencing flow. Conclusion: To enhance opportunities for flow in the lives of people with disabilities, a shift of perspective from individual impairments towards issues of accessibility and occupational justice is needed. Based on this meta-study, critical disability theory and participatory frameworks are recommended for future research to explore strategies to enhance access to flow inducing occupations.
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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: 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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OBJECTIVE: To assess the feasibility of conducting a randomised controlled trial to determine the effectiveness of a twenty-week power-assisted exercise intervention in people with profound intellectual and multiple disabilities and to evaluate the potential beneficial effects of this intervention.DESIGN: Pilot randomised controlled trial.SETTING: A large-scale twenty-four-hour residential facility in the Netherlands.SUBJECTS: Thirty-seven persons with profound intellectual and multiple disabilities.INTERVENTION: Participants in the intervention group received a power-assisted exercise intervention three times a week for thirty minutes over a twenty-week period. Participants in the control group received care as usual.MAIN MEASURES: Trial feasibility by recruitment process and outcomes completion rates; intervention feasibility by programme compliance rates; potential outcomes by functional abilities, alertness, body composition, muscle tone, oxygen saturation, cardiovascular fitness and quality of life.RESULTS: Thirty-seven participants were recruited ( M age = 32.1, SD = 14.6) and were randomly allocated to intervention ( n = 19) and control ( n = 18) groups. Programme compliance rates ranged from 54.2% to 97.7% with a mean (SD) of 81.5% (13.4). Oxygen saturation significantly increased in the intervention group. Standardised effect sizes on the difference between groups in outcome varied between 0.02 and 0.62.CONCLUSIONS: The power-assisted exercise intervention and the trial design were feasible and acceptable to people with profound intellectual and multiple disabilities living in a residential facility. This pilot study suggests that the intervention improves oxygen saturation, but further implementation with the aim of improving other outcomes should be considered with caution.
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Increasing attention has been paid to the ‘voice’ of people living with mild cognitive impairment (or dementia, but there is a lack of clarity about how everyday life is perceived from this insiderinsider’s perspective. This study aimed to explore the everyday life experiences, challenges and facilitators of individuals with MC I and dementia living at home.
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Background: For a healthy lifestyle, people with moderate, severe, and profound intellectual disabilities living in residential facilities and/or participating in day activity centers are dependent on their direct support professionals. However, it is unclear what knowledge and skills these direct support professionals require to support these individuals in living a healthy lifestyle. Therefore, the aim of this study was to identify the needs of direct support professionals for supporting these people with moderate to profound intellectual disabilities to achieve and maintain a healthy lifestyle. Method: Direct support professionals (n = 28) were interviewed with the use of a semi-structured protocol based on the theoretical domains framework. The interviews were analyzed with a theory-driven content analysis. Results: The most frequently mentioned needs referred to the following domains of the theoretical domains framework: environmental context and resources (n = 27), social/professional role and identity (n = 25), social influence (n = 25), skills (n = 24), and knowledge (n = 23). Conclusion: To support people with moderate to profound intellectual disabilities in leading a healthy lifestyle, direct support professionals (DSPs) primarily needed support related to the domain environmental context and resources. Within this domain available time, dealing with different seasons, and a healthy lifestyle policy in the organization need attention. Development of interventions targeting these DSPs needs is required.
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