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

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 Graff^{9

10}, Sabine Jansen¹¹, Thierry Hergueta^{1

12}, Bruno Dubois¹, Alexander Kurz³

Affiliations

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.

PMID: 31111516
DOI: 10.1002/gps.5154

Randomized Controlled Trial

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

Anna Metcalfe et al. Int J Geriatr Psychiatry. 2019 Oct.

. 2019 Oct;34(10):1455-1464.

doi: 10.1002/gps.5154. Epub 2019 Jul 26.

Authors

Affiliations

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.

PMID: 31111516
DOI: 10.1002/gps.5154

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.

Keywords: 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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References

REFERENCES

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

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

Authors

Affiliations

Abstract

References

REFERENCES

Publication types

MeSH terms

Associated data

LinkOut - more resources

Full Text Sources

Medical