Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs
Authors/Creators
- 1. Alliade Practice-Oriented Scientific Research (PWO)
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2.
University Medical Center Groningen
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3.
Hanze University of Applied Sciences
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4.
's Heeren Loo
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5.
Ipse de Bruggen
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6.
University of Antwerp
Description
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.
Files
2021_Dekker_Dementia_in_SPIMD_focusgroups.pdf
Files
(1.9 MB)
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Additional details
Identifiers
Funding
- Netherlands Organisation for Health Research and Development
- Praktijkvragen over dementie bij mensen met (zeer) ernstige verstandelijke (en meervoudige) beperkingen 733050863