Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs

Alain D Dekker, Maureen B G Wissing, Aurora M Ulgiati, Bas Bijl, Gaby van Gool, Marieke R Groen, Esther S Grootendorst, Ina A van der Wal, Johannes S M Hobbelen, Peter P De Deyn, Aly Waninge

Onderzoeksoutput: ArticleAcademicpeer review

Samenvatting

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.

Originele taal-2English
Pagina's (van-tot)1602-1617
Aantal pagina's16
TijdschriftJournal of Applied Research in Intellectual Disabilities
Volume34
Nummer van het tijdschrift6
Vroegere onlinedatum2 jul. 2021
DOI's
StatusPublished - nov. 2021

Keywords

  • dementie
  • syndroom van down
  • focusgroepen
  • verstandelijke beperkingen

Vingerafdruk

Duik in de onderzoeksthema's van 'Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs'. Samen vormen ze een unieke vingerafdruk.

Citeer dit