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Validating the Cognitive Scale for Down Syndrome (CS-DS) to detect longitudinal cognitive decline in adults with Down syndrome

Research output: Contribution to journalArticle

Original languageEnglish
Article number158
JournalFrontiers in Psychiatry
Issue numberAPR
Early online date16 Apr 2019
Accepted/In press4 Mar 2019
E-pub ahead of print16 Apr 2019


King's Authors


Down syndrome (DS) is associated with intellectual disability and an ultra-high risk of developing Alzheimer’s disease. Informant ratings are invaluable to assess abilities and related changes in adults with DS, particularly for those with a more severe intellectual disability and/or cognitive decline. We previously developed the informant rated Cognitive Scale for Down Syndrome (CS-DS) to measure everyday cognitive abilities across memory, executive function, and language domains in adults with DS, finding CS-DS scores are a valid measure of general abilities, and are significantly lower for those with noticeable cognitive decline compared to those without decline. To further test the validity of the CS-DS in detecting changes associated with cognitive decline we collected longitudinal data across two time points, approximately 1.5-2 years apart, for 48 adults with DS aged 36 years and over. CS-DS total scores and executive function domain scores significantly decreased between the two time points, with scores in the memory domain trending towards a significant decrease. Adults with noticeable cognitive decline at the second time point showed a trend to significantly greater change in total scores and significantly greater change in executive function scores compared to those without decline. Change in total scores showed significant correlations with change in scores from other informant measures of everyday adaptive abilities and symptoms associated with dementia, and participant assessment of general cognitive abilities, while change in scores for the memory domain better predicted change in participant assessment scores compared to change in scores for the executive function or language domains. These results suggest informants may better detect changes in the executive function domain, while change in informant-related memory scores best predicts change in assessed cognitive ability. Alternatively, these results may indicate the CS-DS memory domain is able to detect changes across early and late stages in the development of cognitive decline, while the executive function domain is better able to detect changes when later noticeable cognitive decline has occurred. Our results provide further support for the validity of the CS-DS as a tool to assess everyday cognitive abilities and to detect associated longitudinal changes in individuals with DS.

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