Supporting Informal Caregivers of People with Dementia

Partners sought to address critical needs concerning dementia care and support for informal caregivers. The decision of applying for the project was influenced by the growing prevalence of dementia in the EU, as well as by the disproportionate impact of the COVID-19 pandemic on both caregivers and individuals with dementia. This highlighted the urgent need for enhanced support mechanisms, including peer support, education on caregiving techniques and understanding dementia, and developing engaging cognitive activities for patients. Even as the COVID-19 pandemic and its associated restrictions become distant memories, the resources provided by the InfoCARE project remain relevant. They serve as useful tools for preparing caregivers and individuals with dementia for any similar challenges that may emerge in the future. The InfoCARE materials are powerful assets for improving and modernizing caregiving practices, facilitating remote and digital care, decreasing caregivers’ burden and promoting individual autonomy. In essence, these materials continue to serve as a proactive measure, equipping both caregivers and individuals with dementia with the necessary support and strategies to navigate uncertain circumstances effectively.

InfoCARE consortium aimed to achieve several specific objectives: Provide families, adults, and legal guardians of people suffering from dementia with practical tools, tips, and activities based on non-formal education. Raise awareness about dementia and its symptoms among families, caregivers, and society at large. Develop tailored training content using a well-grounded methodology and NFE approaches. Improve social interaction between people with dementia and their informal caregivers and families, utilizing innovative devices such as Amazon Echo Show. Increase digital skills and literacy among target groups to better utilize technology in dementia care. Enhance conditions for caregivers by providing them with better support and assistance. Promote networks among informal caregivers of people with dementia through support groups. Diminish the stigma surrounding dementia through innovative activities and the extensive use of new technologies and non-formal education. Implement piloting activities to directly involve target groups, gathering valuable feedback for the development of high-quality materials.

The consortium implemented a comprehensive number of activities to realize the project’s objectives, ensuring the effective delivery of its official project results, widespread dissemination, and laying the foundation for the sustainable utilization and exploitation of InfoCARE's achievements. These activities encompassed: Development of ad-hoc working methodologies and preliminary research: This involved a meticulous analysis led by the project consortium to gather data and tailor training approaches that catered to the specific needs of the target groups. The aim was to deliver ad-hoc and quality training materials and contents for R1, R2 and R3. Design, elaboration, finetuning and translation of training contents: Across R1, R2, and R3, the consortium developed the training contents, which were further evaluated to meet expected quality standards and tailored to the requirements and nature of each project result. Last but not least, the training contents underwent translation and local adaptation. Conduction of piloting activities: Each partner undertook the implementation of three piloting activities, engaging a total of 73 participants. These activities served as crucial testing grounds to refine the project’s training materials. Implementation of multiplier events: Seven multiplier events were organized, drawing a cumulative total of 280 participants. These events were key for dissemination and sustainability, stakeholder engagement, and fostering broader awareness and networking. Varied dissemination activities: A diverse range of dissemination activities was executed to actively engage with the project’s target groups, enhance project visibility, and generate public awareness on the pivotal issue of supporting informal caregivers and individuals with dementia. Expand networking and collaboration both within and beyond the consortium. This included fostering cooperation with associated partners as well as engaging with organizations, municipalities, care centers, professionals, and other stakeholders relevant for the project execution. Organization of TPMs and monthly meetings: Six TPMs were organized to evaluate strategic milestones, validate working methodologies, monitor project’s progress, and fortify the transnational partnership. Monthly meetings were also organized to ensure ongoing monitoring of action plans and provide rapid response to any deviation. Development of a detailed Sustainability Plan to ensure continued impact and use of project outcomes. Implementation of solid procedures and checks in terms of project management, risk control, and quality assurance to guarantee the seamless operation and success of the project.

The InfoCARE project has generated a comprehensive collection of tangible training materials, resulting from the various activities undertaken throughout the execution of its project results (PRs). These materials represent the concrete outputs of the project and are described as follows. Training on Cognitive activities - Mind-Stimulating Activities for Dementia Patients (R1): Four modules were developed to provide pertinent and comprehensible training about dementia and its symptoms, prevention and cognitive stimulation activities for early and advanced dementia, along with tools, tips, and practical resources. Remote caring - Mind-Stimulating Activities through new technologies (R2): Two modules and 15 video tutorials designed to increase digital literacy among informal caregivers, enhancing the caregiving tasks and meeting the needs of dementia patients through remote and digital stimulation activities. The cognitive stimulation activities from R1 were further developed and adapted for digital and remote use with the support of new technologies like Amazon Echo Show. Development of support groups (R3): One manual with four chapters offering guidance for professionals in dementia care to establish and manage support groups for informal caregivers and families. Additionally, a booklet showcasing 13 successful peer-support initiatives and programs. These materials are aimed at facilitating the exchange of experiences and practices among caregivers, combating the stigma associated with dementia and drawing upon successful peer-support initiatives across diverse communities. Each PR is complemented by a brochure that summarizes the learning contents and resources facilitated by each PR, providing interested individuals with a quick overview to facilitate and encourage their utilization. The InfoCARE project has achieved several other significant results: Active engagement and participation: The project successfully engaged target groups in piloting activities and multiplier events, ensuring their active participation throughout. Increased awareness: The project raised awareness on the topics of dementia and informal caregiving, not only among its target audience but also within society and among organizational actors. Enhanced caregiving conditions for informal caregivers and families: InfoCARE contributed to improve caregiving tasks and ensure better care standards, ultimately enhancing the quality of life for people with dementia. Promotion of peer support to provide informal caregivers with safety nets, emotional support and more awareness on self-care, recognizing the importance of caring for oneself while caring for others. Digital skills enhancement: the project increased caregivers' digital skills, specifically through the utilization of new technologies and digital devices to facilitate caregiving tasks and stimulate individuals with dementia. Strengthening bonding among caregivers and the person they care for: Activities, tools, and tips were proposed to strengthen the bonds between caregivers and their loved ones, helping them navigate the complexities of dementia, its symptoms, and progression. Consortium cooperation: Within the consortium, solid cooperation was established, fostering mutual support, exchange of good practices, and knowledge sharing, leading to professional growth for partners and staff involved. Advancement in digital caregiving: The project unlocked the potential of incorporating digital devices and assistants in dementia caregiving, both in informal and professional settings. Access to training resources: Professionals in healthcare and dementia care gained access to a range of training resources that they can integrate into their daily duties, thereby reinforcing their capacities, skills, and professional care standards. Access to NFE resources: Adult educators were provided with access to tailored non-formal education resources that they can incorporate into their training activities, enriching their teaching methodologies and enhancing learning experiences.