{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,10]],"date-time":"2026-10-10T18:15:16Z","timestamp":1791656116391,"version":"4.3.4"},"reference-count":41,"publisher":"SAGE Publications","issue":"5","license":[{"start":{"date-parts":[[2018,9,25]],"date-time":"2018-09-25T00:00:00Z","timestamp":1537833600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"Banco Santander: Scholarships for Doctorate studies at the University of Salamanca for Latin American students"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Dementia"],"published-print":{"date-parts":[[2020,7]]},"abstract":"<jats:p>In the growing body of literature dealing with the consequences of family caregiving amongst people with dementia, there are few studies examining the impact of Early-onset Familial Alzheimer\u2019s Disease on caregivers. This study exposes the subjective experience of a group of family caregivers who themselves possess a genetic susceptibility to develop this form of dementia. We interviewed and analyzed the accounts of 27 caregivers belonging to family lineages carrying the E280A mutation for Early-onset Alzheimer\u2019s Disease. We utilized a phenomenological method to analyze these accounts, initially tracking seven theoretical categories (Anxiety, Depression, Burden, Resilience, Self-efficacy, Social Support, and Coping Strategies) and then subsequently two additional categories which emerged (Conceptions about the Disease and Other Vital Experiences Interfering with Caregiving). The results show that caring for a loved one while simultaneously running the risk of developing the same form of Alzheimer\u2019s Disease permeates the caregivers\u2019 experience both in a negative and a positive way. The continuous exposition to emotional stress in these caregivers should be seriously considered as they may be at risk of accelerating the onset of symptoms of Alzheimer\u2019s Disease, while simultaneously, early psychological symptoms of dementia may be masked by the emotional sequelae of caregiving, interfering with early diagnosis. Certainly, support services for the entire family group are suggested.<\/jats:p>","DOI":"10.1177\/1471301218801501","type":"journal-article","created":{"date-parts":[[2018,9,26]],"date-time":"2018-09-26T01:39:07Z","timestamp":1537925947000},"page":"1474-1491","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":16,"title":["\u201cIn the flesh\u201d: Narratives of family caregivers at risk of Early-onset Familial Alzheimer\u2019s Disease"],"prefix":"10.1177","volume":"19","author":[{"given":"Maritza","family":"Garc\u00eda-Toro","sequence":"first","affiliation":[{"name":"Faculty of Psychology, University of Salamanca, Salamanca, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mar\u00eda Cruz","family":"S\u00e1nchez-G\u00f3mez","sequence":"additional","affiliation":[{"name":"Faculty of Education, University of Salamanca, Salamanca, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Luc\u00eda","family":"Madrigal Zapata","sequence":"additional","affiliation":[{"name":"Neuroscience Group of Antioquia (GNA), University of Antioquia, Medellin, Colombia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francisco Javier","family":"Lopera","sequence":"additional","affiliation":[{"name":"Neuroscience Group of Antioquia (GNA), University of Antioquia, Medellin, Colombia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2018,9,25]]},"reference":[{"key":"bibr1-1471301218801501","first-page":"72","volume-title":"Redes en la era del conocimiento","author":"Alcantud Mar\u00edn F.","year":"2012"},{"key":"bibr2-1471301218801501","doi-asserted-by":"publisher","DOI":"10.1177\/1471301209349106"},{"key":"bibr3-1471301218801501","volume-title":"Early onset dementia: A national challenge, a future crisis","author":"Alzheimer\u2019s Association.","year":"2006"},{"key":"bibr4-1471301218801501","doi-asserted-by":"publisher","DOI":"10.1080\/07317115.2010.502817"},{"issue":"1","key":"bibr5-1471301218801501","first-page":"71","volume":"19","author":"\u00c1vila-Toscano J.","year":"2010","journal-title":"Revista Colombiana de Psicolog\u00eda"},{"issue":"2","key":"bibr6-1471301218801501","first-page":"409","volume":"26","author":"Ayala Carabajo R.","year":"2008","journal-title":"Revista de Investigaci\u00f3n Educativa"},{"key":"bibr7-1471301218801501","first-page":"125","volume":"11","author":"Beco\u00f1a E.","year":"2006","journal-title":"Asociaci\u00f3n Espa\u00f1ola de Psicologia Clinica y Psicopatologia"},{"key":"bibr8-1471301218801501","unstructured":"Bengtsson S. 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