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We explored the experiences of these people and their informal caregivers, to gain a better understanding of this phenomenon.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We conducted 28 in-depth, semi-structured interviews with 14 dyads, consisting of people with DEM, HD, or KS who had impaired awareness, and their informal caregivers. Topics discussed included impaired awareness of diagnosis and functioning, as well as the consequences of impaired awareness. We applied inductive thematic content analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>We identified four interconnected themes: (1) how impaired awareness is expressed by people with DEM, HD, or KS; (2) how caregivers perceive impaired awareness; (3) how caregivers respond to it; and (4) its consequences. These themes applied to four domains of awareness (diagnosis, physical and cognitive functioning, social and behavioral functioning, and risks in daily activities). Generally, people with DEM, HD or KS experienced no problems arising from impaired awareness, whereas caregivers described substantial challenges. Despite heterogeneity within individuals and domains of functioning, we observed no experiences specific to any disease group (DEM, HD or KS).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Our findings offer insight into the diverging experiences of people with impaired awareness and their caregivers. Education about impaired awareness and managing its consequences may benefit caregivers and improve care.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s12877-025-06680-4","type":"journal-article","created":{"date-parts":[[2025,12,22]],"date-time":"2025-12-22T14:26:29Z","timestamp":1766413589000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Unraveling impaired awareness: experiences of people with dementia, Huntington\u2019s disease and Korsakoff\u2019s syndrome, and their informal caregivers"],"prefix":"10.1186","volume":"26","author":[{"given":"Hester","family":"Fidder","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Esther","family":"de Groot","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marike E.","family":"de Boer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marina R.","family":"Ekkel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ruth B.","family":"Veenhuizen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martin","family":"Smalbrugge","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anouk M.","family":"van Loon","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2025,12,22]]},"reference":[{"issue":"8","key":"6680_CR1","doi-asserted-by":"publisher","first-page":"936","DOI":"10.1080\/13607863.2011.583630","volume":"15","author":"L Clare","year":"2011","unstructured":"Clare L, Markov\u00e1 IS, Roth I, Morris RG. 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Participation was voluntary. Both oral and written informed consent was obtained from all participants, after they were informed about the study. All participants gave written informed consent for the publication of the data in an online open-access publication setting. The medical ethics review committee of the Amsterdam University Medical Center approved the study protocol (file no. 2021.0600) and confirmed that the Medical Research Involving Human Subjects Act (WMO) did not apply.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"All participants gave written informed consent for the publication of the data in an online open-access publication setting.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"55"}}