{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,14]],"date-time":"2026-10-14T04:32:30Z","timestamp":1791952350050,"version":"4.3.4"},"reference-count":40,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2017,3,9]],"date-time":"2017-03-09T00:00:00Z","timestamp":1489017600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/501100005416","name":"Norges Forskningsr\u00e5d","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100005416","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Scandinavian Caring Sciences"],"published-print":{"date-parts":[[2017,12]]},"abstract":"<jats:sec><jats:title>Background<\/jats:title><jats:p>Two of the most common types of young\u2010onset dementia (&lt;65\u00a0years old) are Alzheimer's disease and frontotemporal lobe dementia (FTLD). A limited amount of research that focuses on the needs of spouses of persons with young\u2010onset FTLD (yo\u2010FTLD) has been published. Thus, we have carried out a study aiming to examine the spouses of yo\u2010FTLD experiences and needs for assistance in daily life.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>Qualitative interviews with 16 informants (aged 51\u201369\u00a0years; nine wives, six husbands and one male cohabitant) were conducted in 2014 and 2015. The data were analysed by reformulated and modified method of Grounded Theory.<\/jats:p><\/jats:sec><jats:sec><jats:title>Findings<\/jats:title><jats:p>From the interviews, three main themes with subthemes emerged: The first main theme that appeared is <jats:italic>sneaking signs at the early stage of dementia<\/jats:italic>. It covers two subthemes: <jats:italic>incomprehensible early signs<\/jats:italic> and <jats:italic>lack of self\u2010insight<\/jats:italic>. The second main theme that appeared is <jats:italic>other relations,<\/jats:italic> and it covers three subthemes: <jats:italic>the torment, interference with work<\/jats:italic> and <jats:italic>vanishing social relations<\/jats:italic>. The third main theme: <jats:italic>needs for assistance through all stages of dementia,<\/jats:italic> are described under three subthemes: <jats:italic>Relief of the diagnosis, support at home<\/jats:italic> and <jats:italic>the path to the nursing home<\/jats:italic>.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>The interviews showed that spouses and the whole family of yo\u2010FTLD need interdisciplinary, individualised and specialised support throughout the progression of the disorder. Furthermore, there is a need for more knowledge about yo\u2010FTLD among health personnel, including general practitioners. IT\u2010solutions can contribute to developing such services and support to the entire family.<\/jats:p><\/jats:sec>","DOI":"10.1111\/scs.12397","type":"journal-article","created":{"date-parts":[[2017,3,9]],"date-time":"2017-03-09T09:37:07Z","timestamp":1489052227000},"page":"779-788","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":59,"title":["Experiences and needs of spouses of persons with young\u2010onset frontotemporal lobe dementia during the progression of the disease"],"prefix":"10.1111","volume":"31","author":[{"given":"Aud","family":"Johannessen","sequence":"first","affiliation":[{"name":"Vestfold Hospital Trust Norwegian National Advisory Unit on Ageing and Health T\u00f8nsberg Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne\u2010Sofie","family":"Helvik","sequence":"additional","affiliation":[{"name":"Vestfold Hospital Trust Norwegian National Advisory Unit on Ageing and Health T\u00f8nsberg Norway"},{"name":"Department of Public Health and General Practice Faculty of Medicine Norwegian University of Science and Technology (NTNU) Trondheim Norway"},{"name":"St. Olav's University Hospital Trondheim Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Knut","family":"Engedal","sequence":"additional","affiliation":[{"name":"Vestfold Hospital Trust Norwegian National Advisory Unit on Ageing and Health T\u00f8nsberg Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kirsten","family":"Thorsen","sequence":"additional","affiliation":[{"name":"Vestfold Hospital Trust Norwegian National Advisory Unit on Ageing and Health T\u00f8nsberg Norway"},{"name":"Norwegian Social Research (NOVA) University College of Oslo and Akershus Oslo Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2017,3,9]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1161\/STROKEAHA.108.542308"},{"key":"e_1_2_10_3_1","first-page":"38","article-title":"Rate of early onset Alzheimer's disease: a systematic review and meta\u2010analysis","volume":"3","author":"Zhu XC","year":"2015","journal-title":"Ann Transl Med"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1159\/000112894"},{"key":"e_1_2_10_5_1","volume-title":"Demens fakta og utfordringer: en l\u00e6rebok (Dementia facts and demands)","author":"Engedal K","year":"2009"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1002\/gps.2439"},{"key":"e_1_2_10_7_1","first-page":"1","article-title":"Quality of life and depression in carers of patients with early onset dementia","volume":"21","author":"Rosness TA","year":"2011","journal-title":"Aging Ment Health"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/gps.1992"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.3109\/09540261.2013.776523"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1080\/13607860802224334"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1177\/1533317506293259"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1002\/gps.2411"},{"key":"e_1_2_10_13_1","first-page":"1","article-title":"Adult children of parents with young\u2010onset dementia narrate the experiences of their youth through metaphors","volume":"8","author":"Johannessen A","year":"2015","journal-title":"J Multidiscip Healthc"},{"key":"e_1_2_10_14_1","unstructured":"Florence Center for Specialized Care in Early Onset Dementia.Caring for people in a respectful manner.2011 Report Den Haag."},{"key":"e_1_2_10_15_1","volume-title":"Demens f\u00f8r 65 \u00e5r. 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