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Down Syndrome Cures: Perspectives of People with Down Syndrome and Their Parents
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Rogers, Julie M.; Weaver, Amy L.; Havyer, Rachel D. – American Journal on Intellectual and Developmental Disabilities, 2022
Down syndrome (DS) research is advancing rapidly, yet efforts have raised ethical questions. This mixed methods study describes views of people with DS (self-advocates) and their parents regarding medical interventions for DS. Responses from 35/171 (20.5%) self-advocates and 430/867 (49.6%) parents showed the majority of self-advocates were glad…
Descriptors: Down Syndrome, Intervention, Self Concept, Parent Attitudes
Views of Parents of Children with Down Syndrome on Alzheimer's Disease Vaccination
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Sarah Batbold; Gabrielle Cummings; Kirsten A. Riggan; Marsha Michie; Megan Allyse – Journal of Intellectual Disabilities, 2024
Individuals with Down syndrome (DS) experience increased risk of Alzheimer's disease (AD). Recent studies suggest that a vaccine against AD may be forthcoming. Parental buy-in is critical to the success of any intervention in this population, as adults with DS often rely on familial support. This study aims to characterize parents' perceptions of…
Descriptors: Parent Attitudes, Down Syndrome, Children, Alzheimers Disease
Measurement Properties of the German Version of the Cambridge Examination for Mental Disorders of Older People with Down Syndrome and Others with Intellectual Disabilities (CAMDEX-DS)
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Sandra V. Loosli; Lennart C. Neumann; Elisabeth Wlasich; Catharina Prix; Laura Koll; Endy Weidinger; Jonathan Vöglein; Olivia Wagemann; Adrian Danek; Georg Nübling; Johannes Levin – Journal of Intellectual & Developmental Disability, 2024
Background: The CAMDEX-DS is an instrument to diagnose Alzheimer's disease (AD) in Down syndrome consisting of an informant interview and a cognitive test battery (CAMCOG-DS). Measurement properties of the German CAMDEX-DS were investigated. Method: Fifty-five adults with Down syndrome (19-58 years) participated in this observational study.…
Descriptors: Foreign Countries, Diagnostic Tests, Alzheimers Disease, Down Syndrome
Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities: Applicability of Items in Dementia Screening Instruments for People with Intellectual Disabilities
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Wissing, Maureen B. G.; Dijkstra, Roos; van der Wal, Ina A.; Grootendorst, Esther S.; Hobbelen, Johannes S.M.; van der Putten, Annette A. J.; De Deyn, Peter P.; Waninge, Aly; Dekker, Alain D. – Journal of Mental Health Research in Intellectual Disabilities, 2022
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…
Descriptors: Dementia, Severe Intellectual Disability, Multiple Disabilities, Screening Tests
Dementia in People with Severe/Profound Intellectual (And Multiple) Disabilities: Practice-Based Observations of Symptoms
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Wissing, Maureen B. G.; Fokkens, Andrea S.; Dijkstra, Roos; Hobbelen, Johannes S. M.; van der Putten, Annette A. J.; De Deyn, Peter P.; Waninge, Aly; Dekker, Alain D. – Journal of Mental Health Research in Intellectual Disabilities, 2022
Introduction: Observable 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. Methods: Care professionals and family…
Descriptors: Dementia, Severe Intellectual Disability, Multiple Disabilities, Symptoms (Individual Disorders)