Anna Metcalfe|Bridget Jones|Johannes Mayer|Heather Gage|Jan R. Oyebode|Sarah Boucault|Sabrina Aloui|Uta Schwertel|Markus Böhm|Sophie Tezenas du Montcel|Saïd Lebbah|Alexandre de Mendonça|Marjolein de Vugt|Caroline Graff|Sabine Jansen|T. Hergueta|Bruno Dubois|Alexander Kurz
Online information and support for carers of people with young?onset dementia: A multi?site randomised controlled pilot study
Assistance Publique – Hôpitaux de Paris|Sorbonne Université|Pitié-Salpêtrière Hospital|University of Surrey|Rechts der Isar Hospital|Technical University of Munich|University of Surrey|University of Bradford|Assistance Publique – Hôpitaux de Paris|Sorbonne Université|Pitié-Salpêtrière Hospital|Assistance Publique – Hôpitaux de Paris|Sorbonne Université|Pitié-Salpêtrière Hospital|IMC Information Multimedia Communication (Germany)|Rechts der Isar Hospital|Technical University of Munich|Institut Pierre Louis d‘Épidémiologie et de Santé Publique|Assistance Publique – Hôpitaux de Paris|Inserm|Sorbonne Université|Assistance Publique – Hôpitaux de Paris|Sorbonne Université|Pitié-Salpêtrière Hospital|University of Lisbon|Maastricht University|Karolinska Institutet|Karolinska University Hospital|Deutsche Alzheimer Gesellschaft|Assistance Publique – Hôpitaux de Paris|Sorbonne Université|Pitié-Salpêtrière Hospital|Université Paris Cité|Sorbonne Paris Cité|Assistance Publique – Hôpitaux de Paris|Sorbonne Université|Pitié-Salpêtrière Hospital|Rechts der Isar Hospital|Technical University of Munich
objectives european rhapsody project sought develop test online information support programme caregivers individuals diagnosed young onset dementia objectives assess user acceptability satisfaction programme test outcome measures larger effectiveness study design pilot randomised controlled trial england france germany conducted 61 caregivers adults young onset alzheimers disease frontotemporal degeneration evaluations baseline week 6 week 12 assessed user acceptability satisfaction use programme measured online backend data qualitative feedback user experiences collected via semistructured interviews measures caregiver wellbeing selfefficacy stress burden frequency patient symptoms caregiver reactions explored use subsequent trial results participants logged online average week 6week period consulting approximately 31 programme content seventy percent participants described programme useful easy use eightyfive percent expressed intent use resource future reductions reported levels stress caregivers negative reactions memory symptoms observed following use programme conclusions results indicated rhapsody programme acceptable useful caregivers programme may complementary existing services responding specific needs families affected young onset dementia distribution programme underway england france germany portugal