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dc.contributor.authorKurz, A.*
dc.contributor.authorBakker, C.*
dc.contributor.authorBohm, M.*
dc.contributor.authorDiehl-Schmid, J.*
dc.contributor.authorDubois, B.*
dc.contributor.authorFerreira, C.*
dc.contributor.authorGage, H.*
dc.contributor.authorGraff, C.*
dc.contributor.authorHergueta, T.*
dc.contributor.authorJansen, S.*
dc.contributor.authorJones, B.*
dc.contributor.authorKomar, A.*
dc.contributor.authorde Mendonca, A.*
dc.contributor.authorMetcalfe, A.*
dc.contributor.authorMilecka, K.*
dc.contributor.authorMillenaar, J.*
dc.contributor.authorOrrung Wallin, A.*
dc.contributor.authorOyebode, Jan R.*
dc.contributor.authorSchneider-Schelte, H.*
dc.contributor.authorSaxl, S.*
dc.contributor.authorde Vugt, M.*
dc.date.accessioned2016-07-13T13:15:48Z
dc.date.available2016-07-13T13:15:48Z
dc.date.issued2016
dc.identifier.citationKurz A, Bakker C and Bohm M et al (2016) RHAPSODY – Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot study. International Psychogeriatrics. 28(12): 2091-2099.en_US
dc.identifier.urihttp://hdl.handle.net/10454/8620
dc.descriptionYesen_US
dc.description.abstractBackground: Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling and support to this vulnerable yet underserved group. Methods: The RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) project is a European initiative to improve care for people with YOD by providing an internet-based information and skill-building program for family carers. The e-learning program focuses on managing problem behaviors, dealing with role change, obtaining support and looking after oneself. It will be evaluated in a pilot study in three countries using a randomized unblinded design with a wait-list control group. Participants will be informal carers of people with dementia in Alzheimer’s disease or behavioral-variant Frontotemporal degeneration with an onset before the age of 65 years. The primary outcome will be caregiving self-efficacy after 6 weeks of program use. As secondary outcomes caregivers’ stress and burden, carer health-related quality of life, caring-related knowledge, patient problem behaviors and user satisfaction will be assessed. Program utilization will be monitored and a health-economic evaluation will also be performed. Conclusions: The RHAPSODY project will add to the evidence on the potential and limitations of a conveniently accessible, user-friendly and comprehensive internet-based intervention as an alternative for traditional forms of counseling and support in healthcare, aiming to optimize care and support for people with YOD and their informal caregivers.en_US
dc.description.sponsorshipRHAPSODY is an EU Joint Program - Neurodegenerative Disease Research (JPND) project. The project is supported through the following funding organizations under the aegis of JPND (www.jpnd.eu). France: National Research Agency; Germany: Ministry of Education and Research; The Netherlands: The Netherlands Organization for Health Research and Development; Portugal: Foundation for Science and Technology; Sweden: The Swedish Research Council; United Kingdom: Economic and Social Research Council.en_US
dc.language.isoenen_US
dc.relation.isreferencedbyhttp://dx.doi.org/ 10.1017/S1041610216001186en_US
dc.rights© Cambridge University Press 2016. Reproduced in accordance with the publisher's self-archiving policy.en_US
dc.subjectDementia; Young; Early; Onset; Caregiver; E-learning; Education; Guideen_US
dc.titleRHAPSODY - Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot studyen_US
dc.status.refereedYesen_US
dc.date.Accepted2016-06-30
dc.date.application2016-08-30
dc.typeArticleen_US
dc.type.versionAccepted Manuscripten_US
refterms.dateFOA2018-07-25T15:21:38Z


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