BACKGROUND: Differentiating dementia from baseline level of functioning is difficult among people with severe/profound intellectual (and multiple) disabilities. Moreover, studies on observable dementia symptoms are scarce. This study examined (a) the relevance of dementia diagnosis, (b) observable symptoms and (c) training/information needs.

METHODS: Four explorative focus groups were held with care professionals and family members who have experience with people with severe/profound intellectual (and multiple) disabilities (≥40 years) and decline/dementia.

RESULTS: Thematic analysis showed that participants wanted to know about a dementia diagnosis for a better understanding and to be able to make informed choices (question 1). Using a categorisation matrix, cognitive and behavioural changes were shown to be most prominent (question 2). Participants indicated that they needed enhanced training, more knowledge development and translation, and supportive organisational choices/policies (question 3).

CONCLUSIONS: Timely identifying/diagnosing dementia allows for a timely response to changing needs. This requires a better understanding of symptoms.

Original languageEnglish
Pages (from-to)1602-1617
Number of pages16
JournalJournal of Applied Research in Intellectual Disabilities
Issue number6
Early online date2 Jul 2021
Publication statusPublished - Nov 2021


  • dementia
  • down syndrome
  • focus groups
  • intellectual disabilities


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