Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs

Alain D. Dekker*, Maureen B. G. Wissing, Aurora M. Ulgiati, Bas Bijl, Gaby Gool, Marieke R. Groen, Esther S. Grootendorst, Ina A. Wal, Johannes S. M. Hobbelen, Peter P. De Deyn, Aly Waninge

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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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
  • severe or profound intellectual (and multiple) disabilities

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