{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,26]],"date-time":"2026-06-26T06:00:31Z","timestamp":1782453631369,"version":"3.54.5"},"reference-count":53,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2021,7,2]],"date-time":"2021-07-02T00:00:00Z","timestamp":1625184000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Research Intellect Disabil"],"published-print":{"date-parts":[[2021,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Four explorative focus groups were held with care professionals and family members who have experience with people with severe\/profound intellectual (and multiple) disabilities (\u226540\u2009years) and decline\/dementia.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>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).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Timely identifying\/diagnosing dementia allows for a timely response to changing needs. This requires a better understanding of symptoms.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jar.12912","type":"journal-article","created":{"date-parts":[[2021,7,2]],"date-time":"2021-07-02T09:50:14Z","timestamp":1625219414000},"page":"1602-1617","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":23,"title":["Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs"],"prefix":"10.1111","volume":"34","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8771-218X","authenticated-orcid":false,"given":"Alain D.","family":"Dekker","sequence":"first","affiliation":[{"name":"Department of Neurology and Alzheimer Center University of Groningen, University Medical Center Groningen  Groningen The Netherlands"},{"name":"Department of Practice\u2010Oriented Scientific Research (PWO) Alliade Care Group  Heerenveen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3371-4547","authenticated-orcid":false,"given":"Maureen B. 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