Pilot study of an online information resource for family carers of people diagnosed with young onset dementia

RHAPSODY consortium, on behalf of RHAPSODY and Gage, Heather (2018). Pilot study of an online information resource for family carers of people diagnosed with young onset dementia. [Data Collection]. Colchester, Essex: UK Data Archive. 10.5255/UKDA-SN-853052

Research to Assess Policies and Strategies for Dementia in the Young (RHAPSODY) aims primarily to analyse the health and social care systems and infrastructures available to the severely burdened yet underserved group of people with young onset dementia (YOD) in six European countries. In addition, RHAPSODY attempts to improve the management of people with YOD by supporting their carers using an educational, web-based, interactive e-learning programme.
A multi-disciplinary team of eight main investigators from academia and industry representing the fields of psychiatry, neurology, neuropsychology, neuroscience, health economy and information systems as well as a patient and carer advocacy organisation from six countries will deliver the research. They will analyse, evaluate and compare health and social care policies and strategies (macro level), as well as needs and access to service provision and care (individual level), using documentary analysis, focus groups and qualitative analysis. Using the evidence obtained, the content and format of an internet-based e-learning programme will be tailored to the requirements of the carers of people with YOD. This method of support is particularly appropriate for the target audience in view of barriers related to low prevalence, geographical spread and reduced mobility.
A pilot study will evaluate the telemedicine intervention with regard to feasibility, acceptance and cost-effectiveness in three countries.

Data description (abstract)

Data from a pilot study to assess an online program of information and support for informal (family) carers of people with young onset dementia (YOD), with onset before the age of 65. Participants (20 per country in UK, France and Germany) were informal carers of persons diagnosed with YOD (Alzheimer’s or frontotemporal) within the past three years. Using a randomised controlled study design, participants were allocated to receive access to the program immediately, or six weeks later (waiting list control). Both groups could use the program for six weeks. Data include background information on participants (baseline), with mid-point and final evaluations providing information on program use; coping; psychosocial wellbeing; program-user satisfaction; and health economics factors. Delivery and implementation of the intervention were assessed, potentially to inform a larger-scale trial and future distribution. Anonymised data were retained in a database in Germany and downloaded into SPSS for analysis in France and UK.

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