{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T02:03:48Z","timestamp":1787018628499,"version":"build-2736575974"},"reference-count":32,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2021,1,1]],"date-time":"2021-01-01T00:00:00Z","timestamp":1609459200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["INQUIRY"],"published-print":{"date-parts":[[2021,1]]},"abstract":"<jats:p>Communication problems with their caregivers are common in people with dementia. Although interventions for improvement of communication are being developed, a tool to measure how participants experience their communication is lacking. The objective of this article is to describe the development of a questionnaire that measures the \u201cexperienced communication\u201d of persons with dementia (ECD-P) as well as of their caregivers (ECD-C). Interviews were conducted with five person with dementia\u2014caregiver dyads who had recently received a new communication intervention. Reflexive thematic analysis was performed on the transcripts using ATLAS.ti. Codes were created, categories and themes were identified, and items for the questionnaires were generated. Selection of items and response scales was done in collaboration with the same dyads. The final version was established after pilot testing with seven other dyads and discussion with five experts in the field of dementia care. Analysis of the transcripts resulted in 212 codes and 17 categories within four themes: caregiver competence, social communication, communication difficulties in daily life, and experienced emotions during conversations. The final version of the ECD-P consists of part 1 with 22 items and 4-point Likert scales, and part 2 with two items and 1 to 10 scales. In the final ECD-C (proxy version), part 1 and part 2 are similar to the ECD-P, while a part 3 was added to assess caregivers\u2019 own perspective and emotions (five items). Based on the experiences of people with dementia and their caregivers, we constructed a face-valid questionnaire. This justifies future research to test its clinimetric characteristics.<\/jats:p>","DOI":"10.1177\/00469580211028181","type":"journal-article","created":{"date-parts":[[2021,6,25]],"date-time":"2021-06-25T02:47:20Z","timestamp":1624589240000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":5,"title":["Development of the Experienced Communication in Dementia Questionnaire: A Qualitative Study"],"prefix":"10.1177","volume":"58","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4377-1425","authenticated-orcid":false,"given":"Maria W. L. J.","family":"Olthof-Nefkens","sequence":"first","affiliation":[{"name":"Zorggroep Maas & Waal, Beneden-Leeuwen, The Netherlands"},{"name":"Radboud university medical center, Radboud Institute for Health Sciences, Department of Primary and Community Care, Nijmegen, The Netherlands"},{"name":"Radboud university medical center, Donders Institute for Brain, Cognition and Behaviour, Department of Rehabilitation, Nijmegen, The Netherlands"},{"name":"Radboud university medical center, Radboudumc Alzheimer Center, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Els W. C.","family":"Derksen","sequence":"additional","affiliation":[{"name":"Radboud university medical center, Radboud Institute for Health Sciences, Department of Primary and Community Care, Nijmegen, The Netherlands"},{"name":"Radboud university medical center, Radboudumc Alzheimer Center, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bert J. M.","family":"de Swart","sequence":"additional","affiliation":[{"name":"Radboud university medical center, Donders Institute for Brain, Cognition and Behaviour, Department of Rehabilitation, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria W. G.","family":"Nijhuis-van der Sanden","sequence":"additional","affiliation":[{"name":"Radboud university medical center, Radboudumc Alzheimer Center, Nijmegen, The Netherlands"},{"name":"Radboud university medical center, Radboud Institute for Health Sciences, Scientific Center for Quality of Care (IQ healthcare), Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Johanna G.","family":"Kalf","sequence":"additional","affiliation":[{"name":"Radboud university medical center, Donders Institute for Brain, Cognition and Behaviour, Department of Rehabilitation, Nijmegen, The Netherlands"},{"name":"Radboud university medical center, Radboudumc Alzheimer Center, Nijmegen, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2021,6,24]]},"reference":[{"key":"bibr1-00469580211028181","unstructured":"World Health Organization. Dementia. Published 2019. Updated May 14, 2019. Accessed July 25, 2019. https:\/\/www.who.int\/news-room\/fact-sheets\/detail\/dementia"},{"key":"bibr2-00469580211028181","volume-title":"Cognitive-Communication Disorders of Dementia: Definition, Diagnosis, and Treatment","author":"Bayles KA","year":"2014","edition":"2"},{"key":"bibr3-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1016\/j.pmr.2009.12.011"},{"key":"bibr4-00469580211028181","doi-asserted-by":"publisher","DOI":"10.4088\/JCP.13088nr1c"},{"key":"bibr5-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1093\/geronb\/60.1.S48"},{"key":"bibr6-00469580211028181","volume-title":"Communication Problems between Caregivers and Individuals with Dementia: Implications for Caregiver Well-being","author":"Stiadle JM","year":"2015"},{"key":"bibr7-00469580211028181","doi-asserted-by":"publisher","DOI":"10.4061\/2010\/906818"},{"key":"bibr8-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610212001664"},{"key":"bibr9-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1159\/000316119"},{"key":"bibr10-00469580211028181","volume-title":"Dementia: Which Non-Pharmacological Interventions? Good Clinical Practice (GCP)","author":"Kroes M","year":"2011"},{"key":"bibr11-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1159\/000491081"},{"key":"bibr12-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1016\/j.jalz.2009.04.1236"},{"key":"bibr13-00469580211028181","volume-title":"Arizona Battery for Communication Disorders of Dementia","author":"Bayles KA","year":"1993"},{"key":"bibr14-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1016\/j.neuropsychologia.2010.09.026"},{"key":"bibr15-00469580211028181","volume-title":"Functional Assessment of Communication Skills for Adults (ASHA FACS)","author":"Fratalli C","year":"1995"},{"key":"bibr16-00469580211028181","volume-title":"The Functional Linguistic Communication Inventory","author":"Bayles KA","year":"1994"},{"key":"bibr17-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1080\/13607863.2010.536135"},{"key":"bibr18-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1016\/j.maturitas.2010.02.009"},{"key":"bibr19-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1093\/med\/9780199685219.001.0001"},{"key":"bibr20-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-12-15"},{"key":"bibr21-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1002\/capr.12360"},{"key":"bibr22-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1111\/j.1468-0009.2012.00665.x"},{"key":"bibr23-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1093\/poq\/nfh008"},{"key":"bibr24-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1097\/00002093-200204000-00008"},{"key":"bibr25-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/gnz179"},{"key":"bibr26-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1080\/02699052.2017.1379613"},{"key":"bibr27-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1080\/09638280500052542"},{"key":"bibr28-00469580211028181","volume-title":"International Classification of Functioning, Disability and Health: ICF","author":"World Health Organization","year":"2001"},{"key":"bibr29-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1080\/01612840.2017.1279248"},{"key":"bibr30-00469580211028181","first-page":"21","volume":"5","author":"Logsdon RG","year":"1999","journal-title":"J Ment Health Aging (Lond)"},{"key":"bibr31-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1186\/s12955-018-0959-y"},{"key":"bibr32-00469580211028181","doi-asserted-by":"publisher","DOI":"10.1002\/gps.1044"}],"container-title":["INQUIRY: The Journal of Health Care Organization, Provision, and Financing"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/00469580211028181","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/00469580211028181","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/00469580211028181","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T11:06:13Z","timestamp":1777460773000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/00469580211028181"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,1]]},"references-count":32,"alternative-id":["10.1177\/00469580211028181"],"URL":"https:\/\/doi.org\/10.1177\/00469580211028181","relation":{},"ISSN":["0046-9580","1945-7243"],"issn-type":[{"value":"0046-9580","type":"print"},{"value":"1945-7243","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,1]]},"article-number":"00469580211028181"}}