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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.

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OrganisatieHanze
Gepubliceerd inJournal of Applied Research in Intellectual Disabilities Wiley-Blackwell, Vol. 34, Uitgave: 6, Pagina's: 1602-1617
Datum2021-11
TypeArtikel
DOI10.1111/jar.12912
TaalEngels

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