Anna Metcalfe1, Bridget Jones2, Johannes Mayer3, Heather Gage2, Jan Oyebode4, Sarah Boucault1, Sabrina Aloui1, Uta Schwertel5, Markus Böhm3, Sophie Tezenas du Montcel6, Said Lebbah1, Alexandre De Mendonça7, Marjolein De Vugt8, Caroline Graff9,10, Sabine Jansen11, Thierry Hergueta1,12, Bruno Dubois1, Alexander Kurz3. 1. Hôpital de la Pitié-Salpêtrière, Sorbonne University, Assistance Publique - Hôpitaux de Paris AP-HP, Paris, France. 2. Surrey Health Economics Centre, Department of Clinical and Experimental Medicine, University of Surrey, Guildford, UK. 3. Department of Psychiatry, Klinikum rechts der Isar, Technical University of Munich, Munich, Germany. 4. Centre for Applied Dementia Studies, University of Bradford, Bradford, UK. 5. IMC, Information Multimedia Communication AG, Saarbrücken, Germany. 6. Sorbonne Universités, INSERM, Institut Pierre Louis d'Epidémiologie et de Santé Publique, Assistance Publique-Hôpitaux de Paris AP-HP, Hôpitaux Universitaires Pitié-Salpêtrière-Charles Foix, Paris, France. 7. Instituto de Medicina Molecular, Universidade de Lisboa, Lisbon, Portugal. 8. School for Mental Health and Neuroscience, Maastricht University, Maastricht, Netherlands. 9. Karolinska Institutet, Department NVS, Center for Alzheimer Research, Division of Neurogeriatrics, Bioclinicum J10:20, Solna, Sweden. 10. Karolinska University Hospital, Theme Aging, Unit for Hereditary Dementias, Solna, Sweden. 11. Deutsche Alzheimer Gesellschaft, Berlin, Germany. 12. Laboratoire de Psychopathologie et Processus de Santé, Institut de Psychologie Université Paris Descartes-Sorbonne Paris Cité, Paris, France.
Abstract
OBJECTIVES: The European RHAPSODY project sought to develop and test an online information and support programme for caregivers of individuals diagnosed with young onset dementia. The objectives were to assess user acceptability and satisfaction with the programme and to test outcome measures for a larger effectiveness study. DESIGN: A pilot randomised controlled trial in England, France, and Germany was conducted with 61 caregivers for adults with young onset Alzheimer's disease or frontotemporal degeneration. Evaluations at baseline, week 6, and week 12 assessed user acceptability and satisfaction. Use of the programme was measured from online back-end data. Qualitative feedback on user experiences was collected via semi-structured interviews. Measures of caregiver well-being (self-efficacy, stress, burden, frequency of patient symptoms, and caregiver reactions) were explored for use in a subsequent trial. RESULTS: Participants logged in online on average once a week over a 6-week period, consulting approximately 31% of programme content. Seventy percent of participants described the programme as useful and easy to use. Eighty-five percent expressed intent to use the resource in the future. Reductions in reported levels of stress and caregivers' negative reactions to memory symptoms were observed following use of the programme. CONCLUSIONS: Results indicated that the RHAPSODY programme was acceptable and useful to caregivers. The programme may be complementary to existing services in responding to the specific needs of families affected by young onset dementia. Distribution of the programme is underway in England, France, Germany, and Portugal.
RCT Entities:
OBJECTIVES: The European RHAPSODY project sought to develop and test an online information and support programme for caregivers of individuals diagnosed with young onset dementia. The objectives were to assess user acceptability and satisfaction with the programme and to test outcome measures for a larger effectiveness study. DESIGN: A pilot randomised controlled trial in England, France, and Germany was conducted with 61 caregivers for adults with young onset Alzheimer's disease or frontotemporal degeneration. Evaluations at baseline, week 6, and week 12 assessed user acceptability and satisfaction. Use of the programme was measured from online back-end data. Qualitative feedback on user experiences was collected via semi-structured interviews. Measures of caregiver well-being (self-efficacy, stress, burden, frequency of patient symptoms, and caregiver reactions) were explored for use in a subsequent trial. RESULTS:Participants logged in online on average once a week over a 6-week period, consulting approximately 31% of programme content. Seventy percent of participants described the programme as useful and easy to use. Eighty-five percent expressed intent to use the resource in the future. Reductions in reported levels of stress and caregivers' negative reactions to memory symptoms were observed following use of the programme. CONCLUSIONS: Results indicated that the RHAPSODY programme was acceptable and useful to caregivers. The programme may be complementary to existing services in responding to the specific needs of families affected by young onset dementia. Distribution of the programme is underway in England, France, Germany, and Portugal.
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