{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T20:37:47Z","timestamp":1790800667401,"version":"4.1.0"},"reference-count":30,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2009,1,9]],"date-time":"2009-01-09T00:00:00Z","timestamp":1231459200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2009,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Early\u2010onset Alzheimer's disease (EOAD) is an increasingly diagnosed condition and is associated with genetic risk factors. This is one of the first studies exploring the lived experience of siblings of individuals with EOAD. We used structured questionnaires and semi\u2010structured interviews to assess a broad range of siblings\u2019 experiences with and beliefs about EOAD, including knowledge, perceptions of personal risk, level of worry, and effects on life decisions. Participants (<jats:italic>n<\/jats:italic>\u2009=\u200924) were predominantly female (62.5%) and middle\u2010aged (mean = 56.8 years; range 37\u201383). When asked about risk factors, genetics was cited most frequently (62.5%). Several potential means of reducing AD risk were endorsed, with 54% reporting engagement in behaviors for this purpose (e.g., keeping mentally active). Participants ranged widely in their perceived personal risk of AD (range: 0\u2013100; mean = 35.6%), with higher perceived risk associated with worry about AD (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.01). Understanding siblings\u2019 experiences with EOAD can inform how genetic counselors and healthcare professionals work with this population to facilitate risk communication and decision\u2010making about testing and healthcare.<\/jats:p>","DOI":"10.1007\/s10897-008-9206-8","type":"journal-article","created":{"date-parts":[[2009,1,8]],"date-time":"2009-01-08T16:51:46Z","timestamp":1231433506000},"page":"239-251","source":"Crossref","is-referenced-by-count":12,"title":["Living at Risk: The Sibling's Perspective of Early\u2010Onset Alzheimer's Disease"],"prefix":"10.1002","volume":"18","author":[{"given":"Karen E.","family":"Wain","sequence":"first","affiliation":[{"name":"Department of Human Genetics University of Michigan Ann Arbor MI USA"},{"name":"Cytogenetics Laboratory Mayo Clinic 200 First Street SW Rochester MN 55905 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wendy R.","family":"Uhlmann","sequence":"additional","affiliation":[{"name":"Division of Molecular Medicine anefefd Genetics University of Michigan Ann Arbor MI USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judith","family":"Heidebrink","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Michigan Ann Arbor MI USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J. Scott","family":"Roberts","sequence":"additional","affiliation":[{"name":"Department of Health Behavior and Health Education University of Michigan Ann Arbor MI USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2009,1,9]]},"reference":[{"key":"e_1_2_7_2_1","unstructured":"Alzheimer's Association. (2006).Early\u2010onset dementia: A national challenge a future crisis.Accessible atwww.alz.org; search \u201cearly\u2010onset\u201d."},{"key":"e_1_2_7_3_1","unstructured":"Alzheimer's Association. 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