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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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Title: Online information and support for carers of people with young-onset dementia: A multi-site randomised controlled pilot study.
Authors: Metcalfe, Anna (AUTHOR), Jones, Bridget (AUTHOR), Mayer, Johannes (AUTHOR), Gage, Heather (AUTHOR), Oyebode, Jan (AUTHOR), Boucault, Sarah (AUTHOR), Aloui, Sabrina (AUTHOR), Schwertel, Uta (AUTHOR), Böhm, Markus (AUTHOR), Tezenas du Montcel, Sophie (AUTHOR), Lebbah, Said (AUTHOR), De Mendonça, Alexandre (AUTHOR), De Vugt, Marjolein (AUTHOR), Graff, Caroline (AUTHOR), Jansen, Sabine (AUTHOR), Hergueta, Thierry (AUTHOR), Dubois, Bruno (AUTHOR), Kurz, Alexander (AUTHOR)
Source: International Journal of Geriatric Psychiatry. Oct2019, Vol. 34 Issue 10, p1455-1464. 10p. 2 Diagrams, 4 Charts.
Subjects: Frontotemporal lobar degeneration, Alzheimer's disease, Dementia, Senile dementia, Pilot projects, Semi-structured interviews, Caregivers, Research funding
Geographic Terms: England, 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. [ABSTRACT FROM AUTHOR]
Copyright of International Journal of Geriatric Psychiatry is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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PubType: Academic Journal
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  Data: Online information and support for carers of people with young-onset dementia: A multi-site randomised controlled pilot study.
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  Data: <searchLink fieldCode="AR" term="%22Metcalfe%2C+Anna%22">Metcalfe, Anna</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Jones%2C+Bridget%22">Jones, Bridget</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Mayer%2C+Johannes%22">Mayer, Johannes</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Gage%2C+Heather%22">Gage, Heather</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Oyebode%2C+Jan%22">Oyebode, Jan</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Boucault%2C+Sarah%22">Boucault, Sarah</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Aloui%2C+Sabrina%22">Aloui, Sabrina</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Schwertel%2C+Uta%22">Schwertel, Uta</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Böhm%2C+Markus%22">Böhm, Markus</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Tezenas+du+Montcel%2C+Sophie%22">Tezenas du Montcel, Sophie</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Lebbah%2C+Said%22">Lebbah, Said</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22De+Mendonça%2C+Alexandre%22">De Mendonça, Alexandre</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22De+Vugt%2C+Marjolein%22">De Vugt, Marjolein</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Graff%2C+Caroline%22">Graff, Caroline</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Jansen%2C+Sabine%22">Jansen, Sabine</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Hergueta%2C+Thierry%22">Hergueta, Thierry</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Dubois%2C+Bruno%22">Dubois, Bruno</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Kurz%2C+Alexander%22">Kurz, Alexander</searchLink> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22International+Journal+of+Geriatric+Psychiatry%22">International Journal of Geriatric Psychiatry</searchLink>. Oct2019, Vol. 34 Issue 10, p1455-1464. 10p. 2 Diagrams, 4 Charts.
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  Data: <searchLink fieldCode="DE" term="%22Frontotemporal+lobar+degeneration%22">Frontotemporal lobar degeneration</searchLink><br /><searchLink fieldCode="DE" term="%22Alzheimer's+disease%22">Alzheimer's disease</searchLink><br /><searchLink fieldCode="DE" term="%22Dementia%22">Dementia</searchLink><br /><searchLink fieldCode="DE" term="%22Senile+dementia%22">Senile dementia</searchLink><br /><searchLink fieldCode="DE" term="%22Pilot+projects%22">Pilot projects</searchLink><br /><searchLink fieldCode="DE" term="%22Semi-structured+interviews%22">Semi-structured interviews</searchLink><br /><searchLink fieldCode="DE" term="%22Caregivers%22">Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Research+funding%22">Research funding</searchLink>
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  Label: Geographic Terms
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  Data: <searchLink fieldCode="DE" term="%22England%22">England</searchLink><br /><searchLink fieldCode="DE" term="%22France%22">France</searchLink>
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: <bold>Objectives: </bold>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.<bold>Design: </bold>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.<bold>Results: </bold>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.<bold>Conclusions: </bold>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. [ABSTRACT FROM AUTHOR]
– Name: AbstractSuppliedCopyright
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  Data: <i>Copyright of International Journal of Geriatric Psychiatry is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=138570510
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        Value: 10.1002/gps.5154
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        Text: English
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        Type: general
      – SubjectFull: Alzheimer's disease
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      – SubjectFull: Dementia
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      – SubjectFull: Senile dementia
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      – SubjectFull: Pilot projects
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      – SubjectFull: Caregivers
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      – SubjectFull: England
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