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.
Original language | English |
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Pages (from-to) | 1602-1617 |
Number of pages | 16 |
Journal | Journal of Applied Research in Intellectual Disabilities |
Volume | 34 |
Issue number | 6 |
Early online date | 2-Jul-2021 |
DOIs | |
Publication status | Published - Nov-2021 |
Keywords
- dementia
- Down syndrome
- focus groups
- intellectual disabilities
- severe or profound intellectual (and multiple) disabilities
- ALZHEIMERS-DISEASE
- DIAGNOSTIC-CRITERIA
- MOTOR DISABILITIES
- DOWNS-SYNDROME
- OLDER-ADULTS
- EXPERIENCES
- INSIGHTS