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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If being physically fit is of the outmost importance, then what can be said about the fitness of persons with severe or profound intellectual, visual and motor disabilities? Exactly how could their level of physical fitness be measured? Formulated differently, if a person sees little to nothing and in addition has little comprehension of its immediate environment, then how should one go about testing? How motivated would this person be to be subjected to tests and to perform the tasks as well as possible?' Finding an answer to these questions formed the main incentive for this research. The important concrete results of this research are feasible, reliable, and valid tests for assessing physical fitness of persons with severe or profound intellectual and multiple disabilities, which can be directly implemented into the daily practice.
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Motor activation is rarely integrated into the support of people with profound intellectual and multiple disabilities (PIMD), which might be the result of the limited evidence-based knowledge in this field. Practitioners have recently been developing several motor initiatives for people with PIMD, but it remains unclear about what core elements the motor initiatives actually consist of and towhat level of quality it is implemented in practice. This study aims to offer an overview and analysis of the content and quality of motor initiatives actually in use for people with PIMD. Motor initiatives were explored by asking practitioners to complete an online inventory form. Documents, expert knowledge, and observations were used to collect data about the characteristics of themotor initiatives. The quality of the motor initiatives which met our eligibility criteria, was analyzed on the basis of the level of evidencefor their effectiveness. The inventory yielded 118 motor initiatives of which 17 met the eligibility criteria. We identified four motor initiatives reflecting an approach to motorically activate people with PIMD within various activities, three including powerassisted exercises, three with aquatic exercises, two frameworks which integrated motor activities into their daily programs, two methods which included small-scale activities, two rhythmic movement therapies, and one program including gross motor activities. We found limited indications for descriptive evidence from 17 initiatives, limited or no indications for theoretical evidence from 12 and five initiatives respectively, and none of the initiatives provided a causal level of evidence for effectiveness. A wide variety of motor initiatives is used in current practice to activate persons with PIMD, although their effectiveness is actually unproven.Science and practice should cooperate to develop an evidence-based understanding to ensure more evidence-based support for themotor activation of people with PIMD in the future.
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BACKGROUND: People with severe or profound intellectual and motor disabilities (SPIMD) experience multimorbidity and have complex health needs. Multimorbidity increases mortality, decreases functioning, and negatively influences quality of life. Information regarding patterns of multimorbidity in people with SPIMD may lead to proactive prevention, specifically detection and treatment of physical health problems at an early stage and prevention of secondary complications.AIM: The aim of this study was to explore patterns of multimorbidity in individuals with SPIMD.METHODS AND PROCEDURES: Data from medical records and care plans on reported physical health problems of 99 adults with SPIMD were analysed. To explore the co-occurrence of physical health problems, cross tabulations and a 5-set Venn Diagram were used.OUTCOMES AND RESULTS: The most common combination of two physical health problems comprise the most prevalent physical health problems, which included visual impairment, constipation, epilepsy, spasticity, and scoliosis. These five issues occurred as a multimorbidity combination in 37% of the participants. In 56% of the participants a multimorbidity combination of four health problems emerged, namely constipation, visual impairment, epilepsy, and spasticity.CONCLUSIONS AND IMPLICATIONS: People experiencing SPIMD have interrelated health problems. As a consequence, a broad variety of potential interactions between physical health problems and their treatments may occur. Identifying multimorbidity patterns can provide guidance for accurate monitoring of persistent health problems and, early detection of secondary complications. However, the results require confirmation with larger samples in further studies.
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BACKGROUND: People with severe or profound intellectual and motor disabilities (SPIMD) experience numerous serious physical health problems and comorbidities. Knowledge regarding the prevalence of these problems is needed in order to detect and treat them at an early stage. Data concerning these problems in individuals with SPIMD are limited. Therefore, the aim of this study was to determine the prevalence of reported physical health problems in adults with SPIMD through a review of medical records and care plans.METHOD: We conducted a cross-sectional study employing data obtained from medical and support records. A sample of adults with SPIMD was recruited in eight residential care settings. Physical health problems that had occurred during the previous 12 months or were chronic were recorded.RESULTS: The records of 99 participants were included. A wide range of physical health problems were found with a mean of 12 problems per person. Very high prevalence rates (>50%) were found for constipation, visual impairment, epilepsy, spasticity, deformations, incontinence and reflux.CONCLUSIONS: The results suggest that people with SPIMD simultaneously experience numerous, serious physical health problems. The reliance on reported problems may cause an underestimation of the prevalence of health problems with less visible signs and symptoms such as osteoporosis and thyroid dysfunction.
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BACKGROUND: People with severe or profound intellectual and motor disabilities (SPIMD) encounter several risk factors associated with higher mortality rates. They are also likely to experience a cluster of health problems related to the severe brain damage/dysfunction. In order to earlier detect physical health problems in people with SPIMD, first of all, knowledge regarding the prevalence of physical health problems is necessary. The aim of this systematic review was to methodically review cross-sectional studies on the prevalence of various types of physical health problems in adults with SPIMD.METHOD: MedLine/PubMed, CINAHL, Embase, PsycINFO and Web of Science were searched for studies published between 2004 and 2015. The quality of the incorporated studies was assessed utilising an adjusted 'risk of bias tool' for cross-sectional studies. To estimate the prevalence of the health problems, the proportion and corresponding confidence interval were calculated. A random effect meta-analysis was performed when at least three studies on a specific health problem were available.RESULTS: In total, 20 studies were included and analysed. In the meta-analysis, a homogeneous prevalence rate of 70% (CI 65-75%) was determined for epilepsy. Heterogeneous results were ascertained in the meta-analysis for pulmonary/respiratory problems, hearing problems, dysphagia, reflux disease and visual problems. For the health problems identified in two studies or in a single study, the degree of evidence was low. As expected, higher prevalence rates were found in the current review compared with people with ID for visual problems, epilepsy and spasticity.CONCLUSION: This review provides an overview of the current state of the art research on the prevalence of health problems in adults with SPIMD. There is a substantial need for comprehensive epidemiological data in order to find clusters of health problems specific for people with SPIMD. This would provide insight into the excess morbidity associated with SPIMD.
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Motor learning is particularly challenging in neurological rehabilitation: patients who suffer from neurological diseases experience both physical limitations and difficulties of cognition and communication that affect and/or complicate the motor learning process. Therapists (e.g.,, physiotherapists and occupational therapists) who work in neurorehabilitation are therefore continuously searching for the best way to facilitate patients during these intensive learning processes. To support therapists in the application of motor learning, a framework was developed, integrating knowledge from the literature and the opinions and experiences of international experts. This article presents the framework, illustrated by cases from daily practice. The framework may assist therapists working in neurorehabilitation in making choices, implementing motor learning in routine practice, and supporting communication of knowledge and experiences about motor learning with colleagues and students. The article discusses the framework and offers suggestions and conditions given for its use in daily practice.
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IntroductionObservable dementia symptoms are hardly studied in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D). Insight in symptomatology is needed for timely signaling/diagnosis. This study aimed to identify practice-based observations of dementia symptoms in this population.MethodsCare professionals and family members were invited to complete a survey about symptoms. Quantitatively analyzed survey data were further deepened through semi-structured interviews with care professionals having vast experience in signaling/diagnosing dementia in this population. Symptoms were categorized using a symptom matrix.ResultsSurvey respondents and interviewees frequently observed a decline in activities of daily living (ADL) functioning and behavioral and psychological changes, like increased irritability, anxiety, apathy and decreased eating/drinking behavior. Cognitive symptoms were particularly recognized in persons with verbal communication and/or walking skills. To lesser extent motor changes and medical comorbidities were reported.ConclusionIncreased insight in dementia symptoms contributes to developing a dedicated screening instrument for dementia in people with SPI(M)D.
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Background: The support of people with profound intellectual and multiple disabilities (PIMD) rarely focused onmotor activity, which might have negative consequences for the quality of life of these people. Evidence-based motor activity programs that present individually tailored and structural motor activity for these people are, regretfully, lacking. This study developed such a program for these people and evaluated the implementationprocess.Methods: The motor activity program is developed in accordance with the theoretical premises of the educational program and consists of four methodological steps in which the content is individually filled with: motor activitystructurally embedded within the activities of daily living, and 3–5 motor activities aimed at a specific goal, which is evaluated. Program delivery consisted of a manual, explanation to the teams, and coaching of one contact personper participant (n = 9). Process evaluation included the delivered fidelity, dose, reach, and adaptations made during the program. In addition, mechanisms of impact and the influence of contextual factors were evaluated. Data collection included researcher logbooks, individual program content, and staff reports.Results: The intended fidelity, dose, and reach were not obtained in most participants. Content has been made explicit for seven participants, but only in one participant all critical steps in implementation were performed asintended, though later in time. In three participants, previously offered motor activities were described within the weekly program, but without all activities having a clear link with the goal set. It is showed that the core elementsof the program were affected with the conceived implementation plan. The time schedule, critical elements in implementation and program content were influenced by a lack of conditions such as professionals’ motivationand responsibility, methodical working, interdisciplinarity and continuity in staff.Conclusions: The results suggest that the implementation might be improved in case more attention is paid to the organizational conditions and implementation structure. The findings led to substantial changes in the implementation strategy. This study underlines the importance of process evaluation prior to testing foreffectiveness.
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Movement is an essential part of our lives. Throughout our lifetime, we acquire many different motor skills that are necessary to take care of ourselves (e.g., eating, dressing), to work (e.g., typing, using tools, care for others) and to pursue our hobbies (e.g., running, dancing, painting). However, as a consequence of aging, trauma or chronic disease, motor skills may deteriorate or become “lost”. Learning, relearning, and improving motor skills may then be essential to maintain or regain independence. There are many different ways in which the process of learning a motor skill can be shaped in practice. The conceptual basis for this thesis was the broad distinction between implicit and explicit forms of motor learning. Physiotherapists and occupational therapists are specialized to provide therapy that is tailored to facilitate the process of motor learning of patients with a wide range of pathologies. In addition to motor impairments, patients suffering from neurological disorders often also experience problems with cognition and communication. These problems may hinder the process of learning at a didactic level, and make motor learning especially challenging for those with neurological disorders. This thesis focused on the theory and application of motor learning during rehabilitation of patients with neurological disorders. The overall aim of this thesis was to provide therapists in neurological rehabilitation with knowledge and tools to support the justified and tailored use of motor learning in daily clinical practice. The thesis is divided into two parts. The aim of the first part (Chapters 2‐5) was to develop a theoretical basis to apply motor learning in clinical practice, using the implicit‐explicit distinction as a conceptual basis. Results of this first part were used to develop a framework for the application of motor learning within neurological rehabilitation (Chapter 6). Afterwards, in the second part, strategies identified in first part were tested for feasibility and potential effects in people with stroke (Chapters 7 and 8). Chapters 5-8 are non-final versions of an article published in final form in: Chapter 5: Kleynen M, Moser A, Haarsma FA, Beurskens AJ, Braun SM. Physiotherapists use a great variety of motor learning options in neurological rehabilitation, from which they choose through an iterative process: a retrospective think-aloud study. Disabil Rehabil. 2017 Aug;39(17):1729-1737. doi: 10.1080/09638288.2016.1207111. Chapter 6: Kleynen M, Beurskens A, Olijve H, Kamphuis J, Braun S. Application of motor learning in neurorehabilitation: a framework for health-care professionals. Physiother Theory Pract. 2018 Jun 19:1-20. doi: 10.1080/09593985.2018.1483987 Chapter 7: Kleynen M, Wilson MR, Jie LJ, te Lintel Hekkert F, Goodwin VA, Braun SM. Exploring the utility of analogies in motor learning after stroke: a feasibility study. Int J Rehabil Res. 2014 Sep;37(3):277-80. doi: 10.1097/MRR.0000000000000058. Chapter 8: Kleynen M, Jie LJ, Theunissen K, Rasquin SM, Masters RS, Meijer K, Beurskens AJ, Braun SM. The immediate influence of implicit motor learning strategies on spatiotemporal gait parameters in stroke patients: a randomized within-subjects design. Clin Rehabil. 2019 Apr;33(4):619-630. doi: 10.1177/0269215518816359.
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