Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs. Issue 6 (2nd July 2021)

• Record Type: Journal Article
• Authors: Dekker, Alain D.; Wissing, Maureen B. G.; Ulgiati, Aurora M.; Bijl, Bas; van Gool, Gaby; Groen, Marieke R.; Grootendorst, Esther S.; van der Wal, Ina A.; Hobbelen, Johannes S. M.; De Deyn, Peter P.; Waninge, Aly
• Is Part Of: Journal of applied research in intellectual disabilities. Volume 34:Issue 6(2022)
• Page Start: 1602
• Page End: 1617
• Publication Date: 2021-07-02
• Subjects: dementia -- Down syndrome -- focus groups -- intellectual disabilities -- severe or profound intellectual (and multiple) disabilities; Learning disabilities -- Periodicals; Mental retardation -- Periodicals; Learning disabled -- Periodicals; People with mental disabilities -- Periodicals; 616.85880072
• DOI: 10.1111/jar.12912
• Languages: English
• ISSNs: 1360-2322

Abstract

Abstract: 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.