title: RHAPSODY - Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot study.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
authors: Department of Psychiatry and Psychotherapy,Klinikum rechts der Isar,Technische Universität München,Munich,Germany.
authors: Alexander
authors: A
authors: Kurz
authors: School for Mental Health and Neuroscience,Alzheimer Center Limburg,Maastricht University Medical Center,Maastricht,the Netherlands.
authors: Christian
authors: C
authors: Bakker
authors: Department of Psychiatry and Psychotherapy,Klinikum rechts der Isar,Technische Universität München,Munich,Germany.
authors: Markus
authors: M
authors: Böhm
authors: Department of Psychiatry and Psychotherapy,Klinikum rechts der Isar,Technische Universität München,Munich,Germany.
authors: Janine
authors: J
authors: Diehl-Schmid
authors: Université Pierre et Marie Curie,Hôpital Pitié Salpêtrière,Paris,France.
authors: Bruno
authors: B
authors: Dubois
authors: Institute of Molecular Medicine and Faculty of Medicine,University of Lisbon,Portugal.
authors: Catarina
authors: C
authors: Ferreira
authors: School of Economics,University of Surrey,Guildford,Surrey,UK.
authors: Heather
authors: H
authors: Gage
authors: Department of Neurobiology,Care Sciences and Society,Karolinska Institutet,Huddinge,Sweden.
authors: Caroline
authors: C
authors: Graff
authors: Université Pierre et Marie Curie,Hôpital Pitié Salpêtrière,Paris,France.
authors: Thierry
authors: T
authors: Hergueta
authors: Deutsche Alzheimer Gesellschaft,Selbsthilfe Demenz,Berlin,Germany.
authors: Sabine
authors: S
authors: Jansen
authors: School of Economics,University of Surrey,Guildford,Surrey,UK.
authors: Bridget
authors: B
authors: Jones
authors: Information Multimedia Communication GmbH (IM-C),Saarbrücken,Germany.
authors: Alexander
authors: A
authors: Komar
authors: Institute of Molecular Medicine and Faculty of Medicine,University of Lisbon,Portugal.
authors: Alexandre
authors: A
authors: de Mendonça
authors: Université Pierre et Marie Curie,Hôpital Pitié Salpêtrière,Paris,France.
authors: Anna
authors: A
authors: Metcalfe
authors: Department of Psychiatry and Psychotherapy,Klinikum rechts der Isar,Technische Universität München,Munich,Germany.
authors: Katrina
authors: K
authors: Milecka
authors: School for Mental Health and Neuroscience,Alzheimer Center Limburg,Maastricht University Medical Center,Maastricht,the Netherlands.
authors: Joany
authors: J
authors: Millenaar
authors: Department of Neurobiology,Care Sciences and Society,Karolinska Institutet,Huddinge,Sweden.
authors: Anneli
authors: A
authors: Orrung Wallin
authors: School of Economics,University of Surrey,Guildford,Surrey,UK.
authors: Jan
authors: J
authors: Oyebode
authors: Deutsche Alzheimer Gesellschaft,Selbsthilfe Demenz,Berlin,Germany.
authors: Helga
authors: H
authors: Schneider-Schelte
authors: Deutsche Alzheimer Gesellschaft,Selbsthilfe Demenz,Berlin,Germany.
authors: Susanna
authors: S
authors: Saxl
authors: School for Mental Health and Neuroscience,Alzheimer Center Limburg,Maastricht University Medical Center,Maastricht,the Netherlands.
authors: Marjolein
authors: M
authors: de Vugt
mesh_terms: D000544:Alzheimer Disease / Q000523:psychology / Q000628:therapy; D017028:Caregivers / Q000193:education / Q000523:psychology; D000068376:Compassion Fatigue / Q000517:prevention & control*; D005260:Female; D057180:Frontotemporal Dementia / Q000523:psychology / Q000628:therapy; D006801:Humans; D007391:International Cooperation; D020407:Internet; D008297:Male; D008875:Middle Aged; D011361:Professional Competence; D011788:Quality of Life; D012107:Research Design; D020377:Self Efficacy; D012944:Social Support
keywords: caregiver; dementia; e-learning; early; education; guide; onset; young