{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,7]],"date-time":"2026-10-07T09:08:56Z","timestamp":1791364136955,"version":"4.3.1"},"reference-count":45,"publisher":"Wiley","issue":"12","license":[{"start":{"date-parts":[[2016,6,6]],"date-time":"2016-06-06T00:00:00Z","timestamp":1465171200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"France National Research Agency"},{"name":"Germany Ministry of Education and Research"},{"name":"Dutch Organisation for Health Research and Development"},{"name":"Portugese Foundation for Science and Technology"},{"DOI":"10.13039\/501100004359","name":"Swedish Research Council","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100004359","id-type":"DOI","asserted-by":"crossref"}]},{"name":"United Kingdom the Economic and Social Research Council"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Int J Geriat Psychiatry"],"published-print":{"date-parts":[[2016,12]]},"abstract":"<jats:sec><jats:title>Objective<\/jats:title><jats:p>In this review, the care needs and experiences with the use of available services of individuals with young\u2010onset dementia (YOD) and their caregivers were investigated. This knowledge is an important prerequisite for the development of appropriate interventions and personalized care to address their specific needs and problems.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design<\/jats:title><jats:p>A systematic literature search was performed in PubMed, Psycinfo and Cinahl. A quality checklist for observational and qualitative studies was used to appraise the methodological quality of the studies.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Twenty\u2010seven studies were included, and a synthesis of the literature revealed six themes. The first theme concerned problems in the diagnostic period. Early recognition and referral was reported as an essential area that required improvement in order to obtain appropriate help in time. The second theme discussed the need for information about YOD and the availability of care throughout the caregiving trajectory. The third theme described barriers in access to care that hindered caregivers in finding the right services. The fourth theme showed the availability of appropriate services and specific unmet needs. The fifth theme illustrated that behavioural and personality changes pose a significant challenge for caregivers and other family members. The last theme showed the profound impact of YOD on caregivers.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The literature indicates that people with YOD and their caregivers face a wide range of difficulties during the disease process. The reviewed studies provide an important foundation for knowledge and awareness about the specific care needs and experiences of people with YOD and their caregivers. Copyright \u00a9 2016 John Wiley &amp; Sons, Ltd.<\/jats:p><\/jats:sec>","DOI":"10.1002\/gps.4502","type":"journal-article","created":{"date-parts":[[2016,6,7]],"date-time":"2016-06-07T00:32:51Z","timestamp":1465259571000},"page":"1261-1276","source":"Crossref","is-referenced-by-count":155,"title":["The care needs and experiences with the use of services of people with young\u2010onset dementia and their caregivers: a systematic review"],"prefix":"10.1002","volume":"31","author":[{"given":"Joany K.","family":"Millenaar","sequence":"first","affiliation":[{"name":"School for Mental Health and Neuroscience, Alzheimer Centre Limburg Maastricht University Medical Centre  Maastricht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christian","family":"Bakker","sequence":"additional","affiliation":[{"name":"Florence, Mariahoeve Centre for Specialized Care in Young\u2010Onset Dementia  The Hague The Netherlands"},{"name":"Department of Primary and Community Care: Centre for Family Medicine, Geriatric Care and Public Health Radboud University Nijmegen Medical Centre  Nijmegen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Raymond T. C. M.","family":"Koopmans","sequence":"additional","affiliation":[{"name":"Department of Primary and Community Care: Centre for Family Medicine, Geriatric Care and Public Health Radboud University Nijmegen Medical Centre  Nijmegen The Netherlands"},{"name":"Alzheimer Centre Nijmegen Radboud University Nijmegen Medical Centre  Nijmegen The Netherlands"},{"name":"Joachim en Anna Centre for Specialized Geriatric Care  Nijmegen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Frans R. J.","family":"Verhey","sequence":"additional","affiliation":[{"name":"School for Mental Health and Neuroscience, Alzheimer Centre Limburg Maastricht University Medical Centre  Maastricht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alexander","family":"Kurz","sequence":"additional","affiliation":[{"name":"Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar Technische Universit\u00e4t M\u00fcnchen  Munich Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marjolein E.","family":"de Vugt","sequence":"additional","affiliation":[{"name":"School for Mental Health and Neuroscience, Alzheimer Centre Limburg Maastricht University Medical Centre  Maastricht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2016,6,6]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301209349106"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/gps.1935"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1177\/1533317512466690"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jamda.2012.09.011"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610213001476"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1177\/1533317510385811"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610213002639"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2524.2004.00505.x"},{"key":"e_1_2_7_10_1","first-page":"81","article-title":"Diagnosing early onset dementia and then what? A frustrating system of aftercare resources","volume":"5","author":"Chemali Z","year":"2011","journal-title":"Int J Gen Med"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1017\/S0317167100054147"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.1002\/gps.930100710"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1177\/1533317513494443"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12912-014-0049-3"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610205002073"},{"key":"e_1_2_7_16_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1745-7599.2008.00342.x"},{"key":"e_1_2_7_17_1","first-page":"111","article-title":"Living with early onset dementia: exploring the experience and developing evidence\u2010based guidelines for practice","volume":"5","author":"Harris PB","year":"2004","journal-title":"Alzheimer's Care Today"},{"key":"e_1_2_7_18_1","doi-asserted-by":"crossref","unstructured":"HigginsJP GreenS.2008.Cochrane handbook for systematic reviews of interventions Wiley Online Library.","DOI":"10.1002\/9780470712184"},{"key":"e_1_2_7_19_1","article-title":"Experiences of persons with early\u2010onset dementia in everyday life: a qualitative study","author":"Johannessen A","year":"2011","journal-title":"Dementia"},{"key":"e_1_2_7_20_1","doi-asserted-by":"publisher","DOI":"10.1159\/000228258"},{"key":"e_1_2_7_21_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610214001574"},{"key":"e_1_2_7_22_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301212440873"},{"key":"e_1_2_7_23_1","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1099-1166(199805)13:5<323::AID-GPS768>3.0.CO;2-O"},{"key":"e_1_2_7_24_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2005.12.010"},{"key":"e_1_2_7_25_1","doi-asserted-by":"publisher","DOI":"10.2190\/Q6J4-R143-P630-KW41"},{"key":"e_1_2_7_26_1","unstructured":"MillenaarJK vanVlietD BakkerC et al.2013.The experiences and needs of children living with a parent with young onset dementia: results from the needyd study.International psychogeriatrics\/IPA 1\u201310."},{"key":"e_1_2_7_27_1","doi-asserted-by":"publisher","DOI":"10.7326\/0003-4819-151-4-200908180-00135"},{"key":"e_1_2_7_28_1","doi-asserted-by":"crossref","unstructured":"MoosRH SchaeferJA.1984.The crisis of physical illness.Coping with physical illness. Springer.","DOI":"10.1007\/978-1-4684-4772-9"},{"key":"e_1_2_7_29_1","doi-asserted-by":"publisher","DOI":"10.1192\/bjp.166.6.777"},{"key":"e_1_2_7_30_1","doi-asserted-by":"publisher","DOI":"10.1017\/S0317167100012907"},{"key":"e_1_2_7_31_1","unstructured":"World Health Organization.2012.Dementia: a public health priority. WHO."},{"key":"e_1_2_7_32_1","first-page":"047","article-title":"Guidance on the conduct of narrative synthesis in systematic reviews","volume":"15","author":"Popay J","year":"2006","journal-title":"ESRC Methods Prog"},{"key":"e_1_2_7_33_1","unstructured":"PrinceM KnappM GuerchetM et al.2014.Dementia UK: update Alzheimer's Society."},{"key":"e_1_2_7_34_1","doi-asserted-by":"publisher","DOI":"10.1159\/000207447"},{"key":"e_1_2_7_35_1","doi-asserted-by":"publisher","DOI":"10.1111\/jpm.12154"},{"key":"e_1_2_7_36_1","doi-asserted-by":"publisher","DOI":"10.1080\/13607860802224334"},{"key":"e_1_2_7_37_1","doi-asserted-by":"publisher","DOI":"10.1002\/gps.2818"},{"key":"e_1_2_7_38_1","doi-asserted-by":"publisher","DOI":"10.1002\/gps.930090110"},{"key":"e_1_2_7_39_1","doi-asserted-by":"publisher","DOI":"10.1017\/S0033291712001122"},{"key":"e_1_2_7_40_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610211001013"},{"key":"e_1_2_7_41_1","doi-asserted-by":"publisher","DOI":"10.1002\/gps.2439"},{"key":"e_1_2_7_42_1","doi-asserted-by":"publisher","DOI":"10.1002\/gps.2439"},{"key":"e_1_2_7_43_1","doi-asserted-by":"publisher","DOI":"10.1097\/WAD.0b013e31826cffa5"},{"key":"e_1_2_7_44_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-008-9206-8"},{"key":"e_1_2_7_45_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.midw.2005.05.004"},{"key":"e_1_2_7_46_1","doi-asserted-by":"publisher","DOI":"10.1192\/pb.25.10.384"}],"container-title":["International Journal of Geriatric Psychiatry"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1002%2Fgps.4502","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/gps.4502","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,10,3]],"date-time":"2023-10-03T22:36:09Z","timestamp":1696372569000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/gps.4502"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2016,6,6]]},"references-count":45,"journal-issue":{"issue":"12","published-print":{"date-parts":[[2016,12]]}},"alternative-id":["10.1002\/gps.4502"],"URL":"https:\/\/doi.org\/10.1002\/gps.4502","archive":["Portico"],"relation":{},"ISSN":["0885-6230","1099-1166"],"issn-type":[{"value":"0885-6230","type":"print"},{"value":"1099-1166","type":"electronic"}],"subject":[],"published":{"date-parts":[[2016,6,6]]}}}