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

Autor: Anna Metcalfe, C. Ferreira, Alexandre de Mendonça, Bruno Dubois, Sabine Jansen, Jan R. Oyebode, Thierry Hergueta, Markus Böhm, Katrina Milecka, Janine Diehl-Schmid, Heather Gage, Alexander Kurz, Christian Bakker, Marjolein E. de Vugt, Bridget Jones, Susanna Saxl, Helga Schneider-Schelte, Anneli Orrung Wallin, Alexander Komar, Joany Millenaar, Caroline Graff
Přispěvatelé: RS: MHeNs - R1 - Cognitive Neuropsychiatry and Clinical Neuroscience, Psychiatrie & Neuropsychologie, MUMC+: MA Niet Med Staf Psychologie (9), Repositório da Universidade de Lisboa
Rok vydání: 2016
Předmět:
Male
Gerontology
guide
International Cooperation
Psychological intervention
early
Professional Competence
0302 clinical medicine
Health care
030212 general & internal medicine
caregiver
education
Cognition
Middle Aged
Self Efficacy
ddc
Psychiatry and Mental health
Clinical Psychology
Early
Caregivers
Research Design
Frontotemporal Dementia
Female
The Internet
Program Design Language
Compassion Fatigue
medicine.medical_specialty
Alzheimer`s disease Radboud Institute for Health Sciences [Radboudumc 1]
onset
Young
Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18]
Education
03 medical and health sciences
Quality of life (healthcare)
Alzheimer Disease
Intervention (counseling)
medicine
Humans
Dementia
Psychiatry
e-learning
Internet
Onset
030214 geriatrics
young
business.industry
Social Support
Caregiver
medicine.disease
Quality of Life
Geriatrics and Gerontology
business
Guide
dementia
Zdroj: International Psychogeriatrics, 28, 2091-2099
Repositório Científico de Acesso Aberto de Portugal
Repositório Científico de Acesso Aberto de Portugal (RCAAP)
instacron:RCAAP
International Psychogeriatrics, 28, 12, pp. 2091-2099
International Psychogeriatrics, 28(12), 2091-2099. Cambridge University Press
ISSN: 2091-2099
1041-6102
Popis: Copyright © International Psychogeriatric Association 2016
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.
Databáze: OpenAIRE
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