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Title
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Dementia in people with severe or profound intellectual (and multiple) disabilities : focus group research into relevance, symptoms and training needs
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Author
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Abstract
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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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Language
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English
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Source (journal)
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Journal of applied research in intellectual disabilities. - Oxford
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Publication
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Hoboken
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Wiley
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2021
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ISSN
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1360-2322
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DOI
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10.1111/JAR.12912
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Volume/pages
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34
:6
(2021)
, p. 1602-1617
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ISI
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000668832800001
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Pubmed ID
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34212466
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Full text (Publisher's DOI)
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Full text (open access)
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