RHAPSODY: A pilot study evaluating the usability and benefits of an online learning programme for carers of people with young onset dementia

Not Applicable

• Conditions: Young onset dementia (before age 65 years); F00.0; F02.0; Dementia in Alzheimer disease with early onset; Dementia in Pick disease

• Registration Number: DRKS00009891
• Lead Sponsor: Institut de la Mémoire et de la Maladie d’Alzheimer, Hôpital Pitié Salpêtrière

Brief Summary

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 semistructured 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 servicesin responding to the specific needs of families affected by young onset dementia. Distribution of the programme is underway in England, France, Germany, and Portugal.

Detailed Description

Not available

Study Timeline

• Study Start: 2016-04-21
• Study Completion: 2017-02-28
• Results First Posted: 2019-07-26
• Last Update Posted: 19 August 2024

Recruitment & Eligibility

• Status: Complete
• Sex: All
• Target Recruitment: 61

Inclusion Criteria

Primare informal carers of patients with dementia in Alzheimer's disease or behavioural-variant frontotemporal dementia and an onset before the age of 65 years, age over 18 years, basic computer literacy, access to computer and internet

Exclusion Criteria

Carers of people with other dementia

Study & Design

• Study Type: interventional
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
All data will be assessedat baseline as well in weeks 6 and 12 in caregivers:<br>Self-efficacy (Revised Scale for Caregiving Self-Efficacy, RSCSE);<br>Disease-related knowledge (Coping With the Caregiving Role Questionnaire, self-designed). <br>

Secondary Outcome Measures

Name	Time	Method
All data will be assessed at baseline as well as in weeks 6 and 12 in carers:<br>Stress (Perceived Stress Scale, PSS);<br>Health-related quality of life (EuroQol EQ-5D-5L);<br>Burden (Burden Scale for Family Caregivers, BSFC)<br>Patient symptoms (Revised Memory and Behaviour Checklist, RMBC);<br>Technology acceptance (Technology Acceptance Model, TAM, adapted).