Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities: Applicability of Items in Dementia Screening Instruments for People with Intellectual Disabilities

Maureen Wissing, Roos Dijkstra, Ina A. van der Wal, Esther S. Grootendorst, Johannes Hobbelen, Annette A. J. van der Putten, Peter Paul De Deyn, Aly Waninge, Alain D. Dekker

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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.
Original languageEnglish
Pages (from-to)322-363
Number of pages42
JournalJournal of Mental Health Research in Intellectual Disabilities
Issue number4
Publication statusPublished - 29 Aug 2022


  • dementia
  • intellectual disabilities
  • down syndrome
  • severe intellectual disabilities
  • profound intellectual disabilities
  • multiple disabilities
  • screening instruments

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