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dc.contributor.authorMetcalfe, A.
dc.contributor.authorJones, B.
dc.contributor.authorMayer, J.
dc.contributor.authorGage, H.
dc.contributor.authorOyebode, Jan R.
dc.contributor.authorBoucault, S.
dc.contributor.authorAloui, S.
dc.contributor.authorSchwertel, U.
dc.contributor.authorBöhm, M.
dc.contributor.authorTezenas du Montcel, S.
dc.contributor.authorLebbah, S.
dc.contributor.authorDe Mendonça, A.
dc.contributor.authorDe Vugt, M.
dc.contributor.authorGraff, C.
dc.contributor.authorJansen, S.
dc.contributor.authorHergueta, T.
dc.contributor.authorDubois, B.
dc.contributor.authorKurz, A.
dc.date.accessioned2020-10-19T21:49:08Z
dc.date.accessioned2020-11-02T14:30:28Z
dc.date.available2020-10-19T21:49:08Z
dc.date.available2020-11-02T14:30:28Z
dc.date.issued2019-10
dc.identifier.citationMetcalfe A, Jones B, Mayer J et al (2019) Online information and support for carers of people with young-onset dementia: A multi-site randomised controlled pilot study. International Journal of Geriatric Psychiatry. 34(10): 1455-1464.en_US
dc.identifier.urihttp://hdl.handle.net/10454/18147
dc.descriptionNoen_US
dc.description.abstractThe 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.en_US
dc.language.isoenen_US
dc.relation.isreferencedbyhttps://doi.org/10.1002/gps.5154en_US
dc.subjectAlzheimer's diseaseen_US
dc.subjectCaregiver supporten_US
dc.subjectFamily caregiveren_US
dc.subjectFrontotemporal degenerationen_US
dc.subjectOnline interventionen_US
dc.subjectPsycho-educationen_US
dc.subjectRandomised controlled trialen_US
dc.subjectTechnology acceptanceen_US
dc.subjectThematic analysisen_US
dc.subjectYoung onset dementiaen_US
dc.titleOnline information and support for carers of people with young-onset dementia: A multi-site randomised controlled pilot studyen_US
dc.status.refereedYesen_US
dc.date.Accepted2019-05-04
dc.date.application2019-05-20
dc.typeArticleen_US
dc.type.versionNo full-text in the repositoryen_US
dc.date.updated2020-10-19T20:49:14Z


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