RHAPSODY - Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot study.
Background: 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 inform...
| Publicado en: | International Psychogeriatrics Vol. 28; no. 12; pp. 2091 - 2100 |
|---|---|
| Autores principales: | , , , , , , , , , , , , , , , , , , , |
| Formato: | research randomized controlled trial Journal Article |
| Publicado: |
Elsevier B.V.
Dec2016
|
| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=119732359&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 119732359 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10416102 RAF jtl: International Psychogeriatrics issn: 10416102 maglogo: N pubinfo: dt: Dec2016 vid: 28 iid: 12 pid: 467 pub: Elsevier B.V. place: New York, New York artinfo: ui: 119732359 119732359 NLM27572272 119732359 10.1017/S1041610216001186 NLM27572272 119732359 ppf: 2091 ppct: 9 formats: tig: atl: RHAPSODY - Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot study. aug: au: Kurz, Alexander Bakker, Christian Böhm, Markus Diehl-Schmid, Janine Dubois, Bruno Ferreira, Catarina Gage, Heather Graff, Caroline Hergueta, Thierry Jansen, Sabine Jones, Bridget Komar, Alexander de Mendonça, Alexandre Metcalfe, Anna Milecka, Katrina Millenaar, Joany Orrung Wallin, Anneli Oyebode, Jan Schneider-Schelte, Helga Saxl, Susanna affil: Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar, Technische Universität München, Munich, Germany sug: subj: Support, Psychosocial Caregivers Education Quality of Life Internet Alzheimer's Disease Therapy Alzheimer's Disease Psychosocial Factors Frontotemporal Dementia Psychosocial Factors Caregivers Psychosocial Factors Frontotemporal Dementia Therapy Professional Competence International Relations Study Design Self-Efficacy Male Female Human Middle Age Validation Studies Comparative Studies Evaluation Research Multicenter Studies Randomized Controlled Trials Scales Random Assignment Middle Aged: 45-64 years Male Female ab: Background: 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. pubtype: Academic Journal doctype: research randomized controlled trial Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
|---|