Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities: practice-Based Observations of Symptoms

Maureen Wissing, Andrea Fokkens, Roos Dijkstra, Johannes Hobbelen, A. A. J. van der Putten, Peter Paul De Deyn, Aly Waninge, Alain D. Dekker

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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.

Care professionals and family members were invited to complete a survey about symptoms. Quantitatively analyzed survey data were further deepened through semi-structured interviews with care professionals having vast experience in signaling/diagnosing dementia in this population. Symptoms were categorized using a symptom matrix.

Survey respondents and interviewees frequently observed a decline in activities of daily living (ADL) functioning and behavioral and psychological changes, like increased irritability, anxiety, apathy and decreased eating/drinking behavior. Cognitive symptoms were particularly recognized in persons with verbal communication and/or walking skills. To lesser extent motor changes and medical comorbidities were reported.

Increased insight in dementia symptoms contributes to developing a dedicated screening instrument for dementia in people with SPI(M)D.
Original languageEnglish
Pages (from-to)364-393
Number of pages30
JournalJournal of Mental Health Research in Intellectual Disabilities
Issue number4
Early online date22 Apr 2022
Publication statusPublished - 22 Apr 2022


  • dementia
  • intellectual disabilities
  • severe/profound and multiple disabilities
  • down syndrome


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