The piloting of the online mutual aid groups (MAG) for informal carers of people with dementia – that took place in Italy, Portugal and Romania -, raised the interest of 90 informal carers, who registered for the piloting. From these, 7 MAGs were implemented with a total of 34 informal carers participating.
Every group followed the co-facilitation model, so there were two facilitators in each group: in Italy and Romania the co-facilitation was guaranteed by a senior informal carer and a professional; in Portugal, the co-facilitations was made by two professionals. All facilitators involved in the piloting also participated in the C4D training for facilitators.
Overall, the feedback from the participants was very positive. Being able to get relevant information, meeting new people dealing with similar experiences, sharing their experience and the sense of being useful were the most important aspects of participating in the MAG.
Regarding recommendations for improvement: choosing the right platform – easy to use – for the sessions is very important as well as thinking about different ways of enhancing the asynchronous dimension and possibly to offer more ICT support to interested parties (as the use of ICT might have been an obstacle for some informal carers to even express an interest to join the groups).
Despite of the privacy issues it may rise, using a WhatsApp group could be a possibility. Also, creating a library with relevant information (eg. care centres, social care institutions, articles on how to communicate with people with dementia, and how to provide better care, etc) is one of the recommendations.
Read the full report here: C4D-IO2-Pilot-Report.pdf.
The online platform is a getaway for participants to the online MAG to access safely tools allowing them to be in touch with each other.
The platform is built with the open source software Moodle. By accessing with their username and a password, participants will be addressed to the group they are enrolled to and there, they will be able to access
- A forum: where they can privately exchange written and audio messages, documents and resources under the moderation of a facilitator
- A link to a Skype group, to easily access the next scheduled video-call of the MAG
Watch the video tutorial to see how the platform looks like: https://vimeo.com/333982815
- Introducing ICT allowing for interaction and widespread use;
- Facilitating the social inclusion of informal carers of people with dementia, who face challenges in their social interaction and are more likely to face mental health issues;
- Engaging informal carers at a risk of social exclusion into adult learning;
- Providing guidelines for implementation and resources (practical tips and recommendations to professionals) to successfully implement the model in a given context, without relying on external support.
With this output, we expect to increase the number of dementia caregivers who take part in mutual aid groups, as well as to increase the number of professionals who gain skills and implement mutual aid groups effectively.
The development of this mutual aid group innovative model is at the core of the CARE4DEM project. This output comprises the following activities:
- Definition of the mutual aid groups model architecture and methodology
- Definition of the model’s requirements, including web-based features
- Validation workshops in each project country
- Design of web-based features, development and coding
- Training event for partners’ staff members
- Multiplier events in each country to present the project’s aims and activities
- Piloting of the model, fine-tuning
- Adaptation to countries
- Assessment of the impact and effectiveness of the model on the caregivers’ situation
- Drafting of a final guide/ manual for web-based mutual aid groups’ implementation.
Read the implementation guide
This guide contains guidelines for the implementation of the Care4Dem model, providing details on the process and the different phases and activities to carry out in order to reach out to informal caregivers of people with dementia and provide them support them online. This Implementation Guide targets anyone willing to implement online support to informal carers, using the methodology of mutual support groups.
Read the Implementation Guide here: C4D-IO2-Implementation-Guide-ENG-21072020-web-1.pdf
This report, which gives an insight of the state of play regarding this promising though underdeveloped tool, was coordinated by the Instituto de Salud Carlos III. It constitutes the baseline of the Care4Dem project. Building on a research, it gives an insight of the state of play regarding this particular type of support, the development of which was not well documented. In particular, the report looks at the methodologies applied, and the competences and profiles of the moderators.
As such, this publication aims to emphasise a series of useful pointers for the development of an innovative model of web-based mutual aid groups for dementia carers as part of the CARE4DEM project.
Download the Executive Summary in English, French, Spanish, Romanian, Italian, Portuguese.
Download the full version here: Evidence Review_ Full Report EN
Last Updated on January 8, 2021