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      The Behavioral and Psychological Symptoms of Dementia in Down Syndrome Scale (BPSD-DS II): Optimization and Further Validation 1

      research-article
      a , b , * , a , b , c , d , e , e , f , f , g , h , i , b , j , k , l , l , m , n , o , p , q , r , s , t , u , v , g , h , i , w , e , a , u , a , u , v , *
      Journal of Alzheimer's Disease
      IOS Press
      Alzheimer’s disease, behavior, behavioral and psychological symptoms of dementia, dementia, Down syndrome, intellectual disabilities, neuropsychiatric symptoms, trisomy 21

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          Abstract

          Background:

          People with Down syndrome (DS) are at high risk to develop Alzheimer’s disease dementia (AD). Behavioral and psychological symptoms of dementia (BPSD) are common and may also serve as early signals for dementia. However, comprehensive evaluation scales for BPSD, adapted to DS, are lacking. Therefore, we previously developed the BPSD-DS scale to identify behavioral changes between the last six months and pre-existing life-long characteristic behavior.

          Objective:

          To optimize and further study the scale (discriminative ability and reliability) in a large representative DS study population.

          Methods:

          Optimization was based on item irrelevance and clinical experiences obtained in the initial study. Using the shortened and refined BPSD-DS II, informant interviews were conducted to evaluate 524 individuals with DS grouped according to dementia status: no dementia (DS, N = 292), questionable dementia (DS + Q, N = 119), and clinically diagnosed dementia (DS + AD, N = 113).

          Results:

          Comparing item change scores between groups revealed prominent changes in frequency and severity for anxious, sleep-related, irritable, restless/stereotypic, apathetic, depressive, and eating/drinking behavior. For most items, the proportion of individuals displaying an increased frequency was highest in DS + AD, intermediate in DS + Q, and lowest in DS. For various items within sections about anxious, sleep-related, irritable, apathetic, and depressive behaviors, the proportion of individuals showing an increased frequency was already substantial in DS + Q, suggesting that these changes may serve as early signals of AD in DS. Reliability data were promising.

          Conclusion:

          The optimized scale yields largely similar results as obtained with the initial version. Systematically evaluating BPSD in DS may increase understanding of changes among caregivers and (timely) adaptation of care/treatment.

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          Most cited references46

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          Controlling the False Discovery Rate: A Practical and Powerful Approach to Multiple Testing

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            Interrater reliability: the kappa statistic

            The kappa statistic is frequently used to test interrater reliability. The importance of rater reliability lies in the fact that it represents the extent to which the data collected in the study are correct representations of the variables measured. Measurement of the extent to which data collectors (raters) assign the same score to the same variable is called interrater reliability. While there have been a variety of methods to measure interrater reliability, traditionally it was measured as percent agreement, calculated as the number of agreement scores divided by the total number of scores. In 1960, Jacob Cohen critiqued use of percent agreement due to its inability to account for chance agreement. He introduced the Cohen’s kappa, developed to account for the possibility that raters actually guess on at least some variables due to uncertainty. Like most correlation statistics, the kappa can range from −1 to +1. While the kappa is one of the most commonly used statistics to test interrater reliability, it has limitations. Judgments about what level of kappa should be acceptable for health research are questioned. Cohen’s suggested interpretation may be too lenient for health related studies because it implies that a score as low as 0.41 might be acceptable. Kappa and percent agreement are compared, and levels for both kappa and percent agreement that should be demanded in healthcare studies are suggested.
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              The diagnosis of dementia due to Alzheimer's disease: Recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease

              The National Institute on Aging and the Alzheimer's Association charged a workgroup with the task of revising the 1984 criteria for Alzheimer's disease (AD) dementia. The workgroup sought to ensure that the revised criteria would be flexible enough to be used by both general healthcare providers without access to neuropsychological testing, advanced imaging, and cerebrospinal fluid measures, and specialized investigators involved in research or in clinical trial studies who would have these tools available. We present criteria for all-cause dementia and for AD dementia. We retained the general framework of probable AD dementia from the 1984 criteria. On the basis of the past 27 years of experience, we made several changes in the clinical criteria for the diagnosis. We also retained the term possible AD dementia, but redefined it in a manner more focused than before. Biomarker evidence was also integrated into the diagnostic formulations for probable and possible AD dementia for use in research settings. The core clinical criteria for AD dementia will continue to be the cornerstone of the diagnosis in clinical practice, but biomarker evidence is expected to enhance the pathophysiological specificity of the diagnosis of AD dementia. Much work lies ahead for validating the biomarker diagnosis of AD dementia. Copyright © 2011. Published by Elsevier Inc.
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                Author and article information

                Contributors
                Role: Handling Associate Editor
                Journal
                J Alzheimers Dis
                J Alzheimers Dis
                JAD
                Journal of Alzheimer's Disease
                IOS Press (Nieuwe Hemweg 6B, 1013 BG Amsterdam, The Netherlands )
                1387-2877
                1875-8908
                4 May 2021
                15 June 2021
                2021
                : 81
                : 4
                : 1505-1527
                Affiliations
                [a ]Department of Neurology and Alzheimer Center, University of Groningen , University Medical Center Groningen, Groningen, The Netherlands
                [b ]Department of Practice-oriented Scientific Research (PWO), Alliade Care Group, Heerenveen, The Netherlands
                [c ]Department of Epidemiology, University of Groningen , University Medical Center Groningen, Groningen, The Netherlands
                [d ]Center for Information Technology, University of Groningen , Groningen, The Netherlands
                [e ]Institut Jérôme Lejeune , Paris, France
                [f ]Department of Geriatrics, Fondazione Policlinico Universitario Gemelli IRCCS , Rome, Italy
                [g ]Barcelona Down Medical Center, Fundació Catalana Síndrome de Down, Barcelona, Spain
                [h ] Memory Unit and Biomedical Research Institute Sant Pau (IIB Sant Pau) , Department of Neurology, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain
                [i ]Centro de Investigación Biomédica en Red en Enfermedades Neurodegenerativas (CIBERNED) , Madrid, Spain
                [j ]Aveleijn, Borne, The Netherlands
                [k ]De Twentse Zorgcentra, Enschede, The Netherlands
                [l ]Ipse de Bruggen, Nieuwveen/Nootdorp, The Netherlands
                [m ]Nieuw Woelwijck, Sappemeer, The Netherlands
                [n ]Philadelphia Zorg, Amersfoort, The Netherlands
                [o ]Severinus, Veldhoven, The Netherlands
                [p ]Sherpa, Baarn, The Netherlands
                [q ]Sprank, Zwolle, The Netherlands
                [r ]Vanboeijen, Assen, The Netherlands
                [s ]Department of Primary and Community Care, Radboud University Medical Center , Nijmegen, The Netherlands
                [t ]Dichterbij, Gennep, The Netherlands
                [u ]Laboratory of Neurochemistry and Behavior, Department of Biomedical Sciences and Institute Born-Bunge, University of Antwerp , Antwerp, Belgium
                [v ]Department of Neurology and Memory Clinic, Hospital Network Antwerp (ZNA) Middelheim and Hoge Beuken , Antwerp, Belgium
                [w ]Department of Cardiovascular, Endocrine-metabolic Diseases and Aging, Istituto Superiore di Sanitá, Rome, Italy
                Author notes
                [1]

                This article received a correction notice (Erratum) with the reference: 10.3233/JAD-219007, available at https://content.iospress.com/articles/journal-of-alzheimers-disease/jad219007.

                [* ]Correspondence to: Alain D. Dekker and Peter P. De Deyn, Department of Neurology, University Medical Center Groningen, P.O. Box 30.001, 9700 RB Groningen, The Netherlands. E-mails: a.d.dekker@ 123456umcg.nl ; p.p.de.deyn@ 123456umcg.nl .
                Article
                JAD201427
                10.3233/JAD-201427
                8293661
                33967040
                e021c054-4c99-4ca1-a16e-d84532279a36
                © 2021 – The authors. Published by IOS Press

                This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial (CC BY-NC 4.0) License, which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

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                Categories
                Research Article

                alzheimer’s disease,behavior,behavioral and psychological symptoms of dementia,dementia,down syndrome,intellectual disabilities,neuropsychiatric symptoms,trisomy 21

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