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RHAPSODY – Internet-Based Support For Caregivers of People with Young Onset Dementia: Program Design and Methods of a Pilot Study

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 and de Vugt, Marjolein (2016) RHAPSODY – Internet-Based Support For Caregivers of People with Young Onset Dementia: Program Design and Methods of a Pilot Study INTERNATIONAL PSYCHOGERIATRICS, 28 (2). pp. 2091-2099.

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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.

Item Type: Article
Subjects : Economics
Divisions : Faculty of Health and Medical Sciences > School of Biosciences and Medicine
Authors :
Kurz, Alexander
Bakker, Christian
Böhm, Markus
Diehl-Schmid, Janine
Dubois, Bruno
Ferreira, Catarina
Graff, Caroline
Hergueta, Thierry
Jansen, Sabine
Komar, Alexander
de Mendonça, Alexandre
Metcalfe, Anna
Milecka, Katrina
Millenaar, Joany
Orrung Wallin, Anneli
Oyebode, Jan
Schneider-Schelte, Helga
Saxl, Susanna
de Vugt, Marjolein
Date : December 2016
DOI : 10.1017/S1041610216001186
Copyright Disclaimer : Copyright © International Psychogeriatric Association 2016
Uncontrolled Keywords : Dementia; Young; Early; Onset; Caregiver; E-learning; Education; Guide
Related URLs :
Depositing User : Symplectic Elements
Date Deposited : 07 Jul 2016 13:04
Last Modified : 14 Mar 2019 11:27

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