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

Published online by Cambridge University Press:  30 August 2016

Alexander Kurz*
Affiliation:
Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
Christian Bakker
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, the Netherlands
Markus Böhm
Affiliation:
Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
Janine Diehl-Schmid
Affiliation:
Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
Bruno Dubois
Affiliation:
Université Pierre et Marie Curie, Hôpital Pitié Salpêtrière, Paris, France
Catarina Ferreira
Affiliation:
Institute of Molecular Medicine and Faculty of Medicine, University of Lisbon, Portugal
Heather Gage
Affiliation:
School of Economics, University of Surrey, Guildford, Surrey, UK
Caroline Graff
Affiliation:
Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden
Thierry Hergueta
Affiliation:
Université Pierre et Marie Curie, Hôpital Pitié Salpêtrière, Paris, France
Sabine Jansen
Affiliation:
Deutsche Alzheimer Gesellschaft, Selbsthilfe Demenz, Berlin, Germany
Bridget Jones
Affiliation:
School of Economics, University of Surrey, Guildford, Surrey, UK
Alexander Komar
Affiliation:
Information Multimedia Communication GmbH (IM-C), Saarbrücken, Germany
Alexandre de Mendonça
Affiliation:
Institute of Molecular Medicine and Faculty of Medicine, University of Lisbon, Portugal
Anna Metcalfe
Affiliation:
Université Pierre et Marie Curie, Hôpital Pitié Salpêtrière, Paris, France
Katrina Milecka
Affiliation:
Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
Joany Millenaar
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, the Netherlands
Anneli Orrung Wallin
Affiliation:
Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden Department of Health and Society, Kristianstad University, Kristianstad, Sweden
Jan Oyebode
Affiliation:
School of Economics, University of Surrey, Guildford, Surrey, UK
Helga Schneider-Schelte
Affiliation:
Deutsche Alzheimer Gesellschaft, Selbsthilfe Demenz, Berlin, Germany
Susanna Saxl
Affiliation:
Deutsche Alzheimer Gesellschaft, Selbsthilfe Demenz, Berlin, Germany
Marjolein de Vugt
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, the Netherlands
*Corresponding
Correspondence should be addressed to: Alexander Kurz, Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar, Technische Universität München, Ismaninger Strasse 22, 81675 Munich, Germany. Phone: +49 89 4140-4285; Fax: +49 89 4140-4923. Email: a.kurz@tum.de.

Abstract

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.

Type
Protocol-only paper
Copyright
Copyright © International Psychogeriatric Association 2016 

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