Dementia in People with Severe or Profound Intellectual (and Multiple) Disabilities: Focus Group Research into Relevance, Symptoms and Training Needs

Autor/inn/en	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
Titel	Dementia in People with Severe or Profound Intellectual (and Multiple) Disabilities: Focus Group Research into Relevance, Symptoms and Training Needs
Quelle	In: Journal of Applied Research in Intellectual Disabilities, 34 (2021) 6, S.1602-1617 (16 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (Dekker, Alain D.) ORCID (Wissing, Maureen B. G.) ORCID (Ulgiati, Aurora M.) ORCID (Hobbelen, Johannes S. M.) ORCID (De Deyn, Peter P.) ORCID (Waninge, Aly)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1360-2322
DOI	10.1111/jar.12912
Schlagwörter	Dementia; Severe Intellectual Disability; Multiple Disabilities; Clinical Diagnosis; Symptoms (Individual Disorders); Educational Needs; Information Needs; Caregivers; Family (Sociological Unit) + Suchen Sie Ihr Suchwort? Demenz; Multiple disability; Mehrfachbehinderung; Psychiatrische Symptomatik; Educational need; Bildungsbedarf; Information need; Informationsbedürfnis; Caregiver; Carer; Betreuungsperson; Pfleger; Familie
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 ([greater than or equal to]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. (As Provided).
Anmerkungen	Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01