{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,23]],"date-time":"2026-08-23T18:39:21Z","timestamp":1787510361006,"version":"build-2736575974"},"reference-count":44,"publisher":"MDPI AG","issue":"4","license":[{"start":{"date-parts":[[2023,4,1]],"date-time":"2023-04-01T00:00:00Z","timestamp":1680307200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JPM"],"abstract":"<jats:p>Younger-onset dementia (YOD) refers to onset before 65 years of age and may be associated with a genetic cause. Family communication surrounding any genetic risk is complex, and this process may be further complicated in a YOD context due to its effects on cognition, behaviour, and associated psychosocial consequences. This study aimed to investigate how individuals experience family communication about potential genetic risk and testing for YOD. Thematic analysis was performed on verbatim transcripts of nine semi-structured interviews undertaken with family members who attended a neurogenetics clinic due to a relative diagnosed with YOD. The interviews explored the participants\u2019 experiences of learning that YOD might be inherited and the ensuing family communication about genetic testing. Four key themes emerged: (1) a clinical diagnostic odyssey was common and could be a motivator for genomic testing, (2) pre-existing family tension and\/or disconnection was a common barrier, (3) family members\u2019 autonomy was considered, and (4) avoidant coping strategies influenced communication. Communication regarding potential YOD genetic risk is a complicated process and may be influenced by pre-existing family dynamics, individual coping mechanisms, and a desire to promote autonomy in relatives. To promote effective risk communication, genetic counsellors should pre-emptively address family tensions that may be exacerbated in the context of genetic testing for YOD, with awareness that family strain during a preceding period of diagnostic odyssey is common. Genetic counsellors can offer psychosocial support to facilitate coping with this tension in an adaptive way. The findings also indicated the importance of extending genetic counselling support to relatives.<\/jats:p>","DOI":"10.3390\/jpm13040621","type":"journal-article","created":{"date-parts":[[2023,4,3]],"date-time":"2023-04-03T03:08:31Z","timestamp":1680491311000},"page":"621","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Family Communication about Diagnostic Genetic Testing for Younger-Onset Dementia"],"prefix":"10.3390","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3506-9035","authenticated-orcid":false,"given":"Alice","family":"Poulton","sequence":"first","affiliation":[{"name":"Department of Paediatrics, The University of Melbourne, Parkville, VIC 3051, Australia"},{"name":"Department of Obstetrics and Gynaecology, The University of Melbourne, Parkville, VIC 3051, Australia"},{"name":"Murdoch Children\u2019s Research Institute, Parkville, VIC 3052, Australia"},{"name":"Monash IVF Group Ltd., Cremorne, VIC 3121, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lisette","family":"Curnow","sequence":"additional","affiliation":[{"name":"Murdoch Children\u2019s Research Institute, Parkville, VIC 3052, Australia"},{"name":"Victorian Clinical Genetics Services, Royal Children\u2019s Hospital, Parkville, VIC 3010, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3226-7645","authenticated-orcid":false,"given":"Dhamidhu","family":"Eratne","sequence":"additional","affiliation":[{"name":"Neuropsychiatry, Royal Melbourne Hospital, Parkville, VIC 3051, Australia"},{"name":"Melbourne Neuropsychiatry Centre, The University of Melbourne, Parkville, VIC 3051, Australia"},{"name":"The Florey Institute of Neuroscience and Mental Health, The University of Melbourne, Parkville, VIC 3051, Australia"},{"name":"Walter and Eliza Hall Institute of Medical research, The University of Melbourne, Parkville, VIC 3051, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Adrienne","family":"Sexton","sequence":"additional","affiliation":[{"name":"Genomic Medicine, The Royal Melbourne Hospital, Grattan St, Parkville, VIC 3050, Australia"},{"name":"Department of Medicine-Royal Melbourne Hospital, The University of Melbourne, Parkville, VIC 3052, Australia"},{"name":"Discipline of Genetic Counselling, Graduate School of Health, University of Technology Sydney, Ultimo, NSW 2007, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2023,4,1]]},"reference":[{"key":"ref_1","unstructured":"National Collaborating Centre for Mental Health (2007). 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