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RHAPSODY – Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot study

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dc.contributor.authorKurz, Alexander
dc.contributor.authorBakker, Christian
dc.contributor.authorBöhm, Markus
dc.contributor.authorDiehl-Schmid, Janine
dc.contributor.authorDubois, Bruno
dc.contributor.authorFerreira, Catarina
dc.contributor.authorGage, Heather
dc.contributor.authorGraff, Caroline
dc.contributor.authorHergueta, Thierry
dc.contributor.authorJansen, Sabine
dc.contributor.authorJones, Bridget
dc.contributor.authorKomar, Alexander
dc.contributor.authorDe Mendonça, Alexandre
dc.contributor.authorMetcalfe, Anna
dc.contributor.authorMilecka, Katrina
dc.contributor.authorMillenaar, Joany
dc.contributor.authorOrrung Wallin, Anneli
dc.contributor.authorOyebode, Jan
dc.contributor.authorSchneider-Schelte, Helga
dc.contributor.authorSaxl, Susanna
dc.contributor.authorde Vugt, Marjolein
dc.date.accessioned2021-06-23T17:04:51Z
dc.date.available2021-06-23T17:04:51Z
dc.date.issued2016
dc.descriptionCopyright © International Psychogeriatric Association 2016pt_PT
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.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationInternational Psychogeriatrics , Volume 28 , Issue 12 , December 2016 , pp. 2091 - 2099pt_PT
dc.identifier.doi10.1017/S1041610216001186pt_PT
dc.identifier.eissn1741-203X
dc.identifier.issn1041-6102
dc.identifier.urihttp://hdl.handle.net/10451/48730
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherCambridge University Presspt_PT
dc.relation.publisherversionhttps://www.cambridge.org/core/journals/international-psychogeriatricspt_PT
dc.subjectCaregiverpt_PT
dc.subjectDementiapt_PT
dc.subjecte-learningpt_PT
dc.subjectEarlypt_PT
dc.subjectEducationpt_PT
dc.subjectGuidept_PT
dc.subjectOnsetpt_PT
dc.subjectYoungpt_PT
dc.titleRHAPSODY – Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot studypt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.endPage2099pt_PT
oaire.citation.issue12pt_PT
oaire.citation.startPage2091pt_PT
oaire.citation.titleInternational Psychogeriatricspt_PT
oaire.citation.volume28pt_PT
person.familyNamede Mendonça
person.givenNameAlexandre
person.identifier.ciencia-id1615-41B4-0848
person.identifier.orcid0000-0002-0488-1453
person.identifier.scopus-author-id7003320823
rcaap.rightsrestrictedAccesspt_PT
rcaap.typearticlept_PT
relation.isAuthorOfPublication53ca3547-99ce-4b68-9330-7879a54c47b7
relation.isAuthorOfPublication.latestForDiscovery53ca3547-99ce-4b68-9330-7879a54c47b7

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