{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,24]],"date-time":"2026-08-24T15:41:15Z","timestamp":1787586075532,"version":"build-2736575974"},"reference-count":42,"publisher":"SAGE Publications","issue":"8","license":[{"start":{"date-parts":[[2023,7,28]],"date-time":"2023-07-28T00:00:00Z","timestamp":1690502400000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"National Dementia Office"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Dementia"],"published-print":{"date-parts":[[2023,11]]},"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Receiving a diagnosis of young onset dementia is particularly distressing; the person under 65\u00a0years is often in employment, with financial commitments, young children, and an active social life. Some of the stress experienced by younger people experiencing cognitive changes can be reduced by an early and accurate diagnosis, but this is contingent on the timing of disclosure and a process which is sensitive and appropriate to the person. The study aim was to explore experiences of giving and receiving a diagnosis of young onset dementia, by triangulating the perspectives of the key parties involved.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A qualitative design was employed, using semi-structured interviews. Participants ( N = 47) included people with young onset dementia ( n = 10), family members ( n = 12), and health and social care professionals ( n = 25). Thematic analysis and triangulation enabled identification of overall themes across different participant groups.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>All participant groups agreed on key aspects of good disclosure practice, with two overarching themes: The optimal conditions for disclosure, and how best to disclose a diagnosis. Positive experiences of disclosure were prefaced on having the appropriate space and time; having a support person present; clearly labelling the diagnosis; providing appropriate information at the right pace. Other findings include recommendations for longer appointment times, offering additional support for young families, and for carers of people with atypical presentations (e.g. frontotemporal dementia).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Many people with young onset dementia had unsatisfactory disclosure experiences. Health and social care professionals should provide a \u2018pre-disclosure\u2019 appointment, elicit the amount of information the person may want at the point of disclosure of the diagnosis, balance truth and hope, provide contact details for follow-up, and overall be mindful of the individual in front of them. While young onset dementia may be a life-altering diagnosis, a disclosure meeting which is sensitively undertaken can increase the person\u2019s agency, coping ability, and ultimately empower them to live well with their diagnosis.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/14713012231191958","type":"journal-article","created":{"date-parts":[[2023,7,28]],"date-time":"2023-07-28T10:48:03Z","timestamp":1690541283000},"page":"1757-1775","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":1,"title":["\u201cGive me the knowledge, and I can do what I want with it, it\u2019s my right and my choice\u201d: Triangulated perspectives on the disclosure of young onset dementia"],"prefix":"10.1177","volume":"22","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6854-8975","authenticated-orcid":false,"given":"Siobh\u00e1n","family":"Fox","sequence":"first","affiliation":[{"name":"Centre for Gerontology and Rehabilitation, School of Medicine, University College Cork, Cork, Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3205-3871","authenticated-orcid":false,"given":"Tony","family":"Foley","sequence":"additional","affiliation":[{"name":"Department of General Practice, University College Cork, Cork, Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4196-6464","authenticated-orcid":false,"given":"Suzanne","family":"Cahill","sequence":"additional","affiliation":[{"name":"School of Social Work and Social Policy, Trinity College Dublin, Dublin, Ireland"},{"name":"Centre for Economic and Social Research on Dementia, NUI Galway, Galway, Ireland"},{"name":"Institute of Gerontology, Jonkoping University, Jonkoping, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6840-0359","authenticated-orcid":false,"given":"Caroline","family":"Kilty","sequence":"additional","affiliation":[{"name":"Catherine McAuley School of Nursing and Midwifery, University College Cork, Cork, Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2023,7,28]]},"reference":[{"key":"bibr2-14713012231191958","first-page":"47","volume-title":"The perspectives of people with dementia: Research methods and motivations","author":"Bartlett H.","year":"2002"},{"key":"bibr3-14713012231191958","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"bibr4-14713012231191958","doi-asserted-by":"publisher","DOI":"10.1080\/13607863.2018.1544213"},{"key":"bibr5-14713012231191958","doi-asserted-by":"publisher","DOI":"10.1002\/gps.1464"},{"key":"bibr6-14713012231191958","doi-asserted-by":"publisher","DOI":"10.1080\/13607863.2016.1257563"},{"key":"bibr7-14713012231191958","volume-title":"The Irish national dementia Strategy","author":"Department of Health","year":"2014"},{"key":"bibr8-14713012231191958","doi-asserted-by":"publisher","DOI":"10.1177\/1471301207075625"},{"key":"bibr9-14713012231191958","doi-asserted-by":"publisher","DOI":"10.1177\/174701610800400205"},{"key":"bibr10-14713012231191958","doi-asserted-by":"publisher","DOI":"10.1002\/gps.4430"},{"key":"bibr11-14713012231191958","doi-asserted-by":"publisher","DOI":"10.1177\/1533317513494443"},{"key":"bibr12-14713012231191958","doi-asserted-by":"publisher","DOI":"10.11648\/j.ajtas.20160501.11"},{"key":"bibr13-14713012231191958","doi-asserted-by":"publisher","DOI":"10.1177\/1049732305285708"},{"issue":"7","key":"bibr14-14713012231191958","first-page":"518","volume":"64","author":"Frank C. 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