Online information and support for carers of people with young-onset dementia: A multi-site randomised controlled pilot study

Anna Metcalfe*, Bridget Jones, Johannes Mayer, Heather Gage, Jan Oyebode, Sarah Boucault, Sabrina Aloui, Uta Schwertel, Markus Bohm, Sophie Tezenas du Montcel, Said Lebbah, Alexandre De Mendonca, Marjolein De Vugt, Caroline Graff, Sabine Jansen, Thierry Hergueta, Bruno Dubois, Alexander Kurz

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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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.

Original languageEnglish
Pages (from-to)1455-1464
Number of pages10
JournalInternational Journal of Geriatric Psychiatry
Issue number10
Early online date26 Jul 2019
Publication statusPublished - Oct 2019


  • Alzheimer's disease
  • caregiver support
  • family caregiver
  • frontotemporal degeneration
  • online intervention
  • psycho-education
  • randomised controlled trial
  • technology acceptance
  • thematic analysis
  • young onset dementia


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