The Behavioral and Psychological Symptoms of Dementia in Down Syndrome (BPSD-DS) Scale: Comprehensive Assessment of Psychopathology in Down Syndrome

Alain D. Dekker, Silvia Sacco, Angelo Carfi, Bessy Benejam, Yannick Vermeiren, Gonny Beugelsdijk, Mieke Schippers, Lyanne Hassefras, José Eleveld, Sharina Grefelman, Roelie Fopma, Monique Bomer-Veenboer, Mariángeles Boti, G.D.E. Oosterling, Esther Scholten, Marleen Tollenaere, Laura Checkley, André Strydom, Gert Van Goethem, Graziano OnderRafael Blesa, Christine Zu Eulenburg, Antonia M.W. Coppus, Anne Sophie Rebillat, Juan Fortea, Peter P. De Deyn*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

12 Citations (Scopus)

Abstract

People with Down syndrome (DS) are prone to develop Alzheimer's disease (AD). Behavioral and psychological symptoms of dementia (BPSD) are core features, but have not been comprehensively evaluated in DS. In a European multidisciplinary study, the novel Behavioral and Psychological Symptoms of Dementia in Down Syndrome (BPSD-DS) scale was developed to identify frequency and severity of behavioral changes taking account of life-long characteristic behavior. 83 behavioral items in 12 clinically defined sections were evaluated. The central aim was to identify items that change in relation to the dementia status, and thus may differentiate between diagnostic groups. Structured interviews were conducted with informants of persons with DS without dementia (DS, n=149), with questionable dementia (DS+Q, n=65), and with diagnosed dementia (DS+AD, n=67). First exploratory data suggest promising interrater, test-retest, and internal consistency reliability measures. Concerning item relevance, group comparisons revealed pronounced increases in frequency and severity in items of anxiety, sleep disturbances, agitation & stereotypical behavior, aggression, apathy, depressive symptoms, and eating/drinking behavior. The proportion of individuals presenting an increase was highest in DS+AD, intermediate in DS+Q, and lowest in DS. Interestingly, among DS+Q individuals, a substantial proportion already presented increased anxiety, sleep disturbances, apathy, and depressive symptoms, suggesting that these changes occur early in the course of AD. Future efforts should optimize the scale based on current results and clinical experiences, and further study applicability, reliability, and validity. Future application of the scale in daily care may aid caregivers to understand changes, and contribute to timely interventions and adaptation of caregiving.

Original languageEnglish
Pages (from-to)797-820
Number of pages24
JournalJournal of Alzheimer's Disease
Volume63
Issue number2
DOIs
Publication statusPublished - 2018
Externally publishedYes

Keywords

  • Alzheimer's disease
  • behavior
  • BPSD
  • dementia
  • Down syndrome
  • neuropsychiatric symptoms
  • trisomy 21

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