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Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs
Author(s) -
Dekker Alain D.,
Wissing Maureen B. G.,
Ulgiati Aurora M.,
Bijl Bas,
Gool Gaby,
Groen Marieke R.,
Grootendorst Esther S.,
Wal Ina A.,
Hobbelen Johannes S. M.,
De Deyn Peter P.,
Waninge Aly
Publication year - 2021
Publication title -
journal of applied research in intellectual disabilities
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.056
H-Index - 63
eISSN - 1468-3148
pISSN - 1360-2322
DOI - 10.1111/jar.12912
Subject(s) - dementia , intellectual disability , thematic analysis , relevance (law) , psychology , focus group , cognition , focus (optics) , clinical psychology , psychiatry , medicine , qualitative research , disease , social science , pathology , marketing , sociology , political science , law , business , physics , optics
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.