{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,3]],"date-time":"2026-06-03T14:02:32Z","timestamp":1780495352360,"version":"3.54.1"},"reference-count":52,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2025,4,6]],"date-time":"2025-04-06T00:00:00Z","timestamp":1743897600000},"content-version":"vor","delay-in-days":5,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100003246","name":"Nederlandse Organisatie voor Wetenschappelijk Onderzoek","doi-asserted-by":"publisher","award":["733050512"],"award-info":[{"award-number":["733050512"]}],"id":[{"id":"10.13039\/501100003246","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["alz-journals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Alzheimer's &amp;amp; Dementia"],"published-print":{"date-parts":[[2025,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>INTRODUCTION<\/jats:title><jats:p>We explored patients\u2019 and families\u2019 interest in, predictors of, and considerations regarding genetic testing for monogenic causes of dementia in a diagnostic setting.<\/jats:p><\/jats:sec><jats:sec><jats:title>METHODS<\/jats:title><jats:p>This mixed\u2010methods study evaluated 519 consecutive Alzheimer Center Amsterdam patients for monogenic testing eligibility. Among those qualifying, differences between testers and non\u2010testers were analyzed. Thirty\u2010three patients completed questionnaires. Additionally, we conducted 21 semi\u2010structured interviews with 15 patients and 18 relatives. Verbatim transcripts were analyzed inductively.<\/jats:p><\/jats:sec><jats:sec><jats:title>RESULTS<\/jats:title><jats:p>Of 138 (27%) eligible patients (46% female, age 61\u00a0\u00b1\u00a08 years, Mini\u2010Mental State Examination [MMSE] 22\u00a0\u00b1\u00a06), 75 (54%) underwent genetic testing. Testers had better cognition, higher quality of life, and more often undetermined diagnoses than non\u2010testers (all <jats:italic>p\u00a0<\/jats:italic>&lt;\u00a00.05). Decisions were guided by intuitive, value\u2010driven judgments: testers sought to provide heredity information to relatives, enhance actionability, and reduce uncertainty, while non\u2010testers worried about psychosocial impact on family, or unfavorable timing.<\/jats:p><\/jats:sec><jats:sec><jats:title>DISCUSSION<\/jats:title><jats:p>The substantial interest in genetic testing for monogenic causes of dementia underscores the need for further research into the implications of disclosing test results to memory clinic patients.<\/jats:p><\/jats:sec><jats:sec><jats:title>Highlights<\/jats:title><jats:p><jats:list list-type=\"bullet\">\n<jats:list-item><jats:p>Half of memory clinic patients\u2019 who met eligibility criteria proceeded with genetic testing.<\/jats:p><\/jats:list-item>\n<jats:list-item><jats:p>Those tested were more likely to have an undetermined diagnosis, better cognition, and higher quality of life.<\/jats:p><\/jats:list-item>\n<jats:list-item><jats:p>Decisions were motivated less by deliberation of factual information, and more by quick, intuitive judgments.<\/jats:p><\/jats:list-item>\n<jats:list-item><jats:p>Motivations pro included providing information, enhancing actionability, and resolving uncertainty.<\/jats:p><\/jats:list-item>\n<jats:list-item><jats:p>Motivations con comprised concerns about the emotional burden and disruptive impact on their family.<\/jats:p><\/jats:list-item>\n<\/jats:list><\/jats:p><\/jats:sec>","DOI":"10.1002\/alz.70140","type":"journal-article","created":{"date-parts":[[2025,4,7]],"date-time":"2025-04-07T01:01:32Z","timestamp":1743987692000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Deciding on genetic testing for familial dementia: Perspectives of patients and families"],"prefix":"10.1002","volume":"21","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9155-7490","authenticated-orcid":false,"given":"Jetske","family":"van der Schaar","sequence":"first","affiliation":[{"name":"Section Genomics of Neurodegenerative Diseases and Aging Department of Human Genetics Vrije Universiteit Amsterdam  Amsterdam Netherlands"},{"name":"Alzheimer Center Amsterdam Neurology, Vrije Universiteit Amsterdam Amsterdam UMC location VUmc  Amsterdam The Netherlands"},{"name":"Amsterdam Neuroscience, Neurodegeneration Research &amp; Diagnostics Center (RDC) \u2010 ADORE  Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sven J.","family":"van der Lee","sequence":"additional","affiliation":[{"name":"Section Genomics of Neurodegenerative Diseases and Aging Department of Human Genetics Vrije Universiteit Amsterdam  Amsterdam Netherlands"},{"name":"Alzheimer Center Amsterdam Neurology, Vrije Universiteit Amsterdam Amsterdam UMC location VUmc  Amsterdam The Netherlands"},{"name":"Amsterdam Neuroscience, Neurodegeneration Research &amp; Diagnostics Center (RDC) \u2010 ADORE  Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eva C. A.","family":"Asscher","sequence":"additional","affiliation":[{"name":"Department of Ethics Law and Humanities  Amsterdam Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yolande A. L.","family":"Pijnenburg","sequence":"additional","affiliation":[{"name":"Alzheimer Center Amsterdam Neurology, Vrije Universiteit Amsterdam Amsterdam UMC location VUmc  Amsterdam The Netherlands"},{"name":"Amsterdam Neuroscience, Neurodegeneration Research &amp; Diagnostics Center (RDC) \u2010 ADORE  Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christa M.","family":"de Geus","sequence":"additional","affiliation":[{"name":"Clinical Genetics Department of Human Genetics Vrije Universiteit Amsterdam  Amsterdam Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annelien L.","family":"Bredenoord","sequence":"additional","affiliation":[{"name":"Erasmus School of Philosophy Erasmus University Rotterdam  Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wiesje M.","family":"van der Flier","sequence":"additional","affiliation":[{"name":"Alzheimer Center Amsterdam Neurology, Vrije Universiteit Amsterdam Amsterdam UMC location VUmc  Amsterdam The Netherlands"},{"name":"Amsterdam Neuroscience, Neurodegeneration Research &amp; Diagnostics Center (RDC) \u2010 ADORE  Amsterdam The Netherlands"},{"name":"Department of Epidemiology &amp; Data sciences Vrije Universiteit Amsterdam Amsterdam UMC location VUmc  Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mariette A.","family":"van den Hoven","sequence":"additional","affiliation":[{"name":"Department of Ethics Law and Humanities  Amsterdam Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ellen M. 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