{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,18]],"date-time":"2026-03-18T01:06:56Z","timestamp":1773796016933,"version":"3.50.1"},"reference-count":26,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2021,1,3]],"date-time":"2021-01-03T00:00:00Z","timestamp":1609632000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2021,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Genetic testing has become routine for many inherited conditions; however, little is known about the unique issues that arise when offering genetic testing for inherited forms of dementia. To better understand the patient perspective, we surveyed study participants about their experiences as they underwent genetic counseling and genetic testing for dementia. We recruited 50 pairs of subjects. Each pair was comprised of one person with cognitive impairment and a cognitively intact co\u2010participant. Study participants received pre\u2010 and post\u2010test genetic counseling and comprehensive genetic testing for dementia. During the study, participant pairs completed four surveys which asked about their experience.\u00a0Testing began with a 38 gene dementia panel. Participants with negative panel results or variants of uncertain significance (VUS) were reflexed to exome sequencing (ES).\u00a0Twenty\u2010nine participants (58%) reported that their primary motivation to join the study was for the benefit to their families. Fifty\u2010two percent of participants initially planned to use their test results to make health and wellness changes, but, six months after disclosure, only 31% had done so.\u00a0Six months after result disclosure, approximately 90% of participant pairs accurately recalled their genetic test results. Overall satisfaction with testing was high, and decision regret was negligible.\u00a0This observational study describes the experiences of study participants undergoing genetic counseling and genetic testing for dementia and found that most participant pairs accurately recalled their results up to six months following disclosure while also maintaining high levels of satisfaction without decision regret. These findings suggest that, in the context of genetic counseling, genetic testing can be effectively used in this population.<\/jats:p>","DOI":"10.1002\/jgc4.1379","type":"journal-article","created":{"date-parts":[[2021,1,4]],"date-time":"2021-01-04T07:27:15Z","timestamp":1609745235000},"page":"793-802","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":11,"title":["Genetic counseling for early onset and familial dementia: Patient perspectives on exome sequencing"],"prefix":"10.1002","volume":"30","author":[{"given":"Bradley","family":"Rolf","sequence":"first","affiliation":[{"name":"Department of Neurology University of Washington Seattle WA USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elizabeth E.","family":"Blue","sequence":"additional","affiliation":[{"name":"Department of Medicine Division of Medical Genetics University of Washington Seattle WA 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