Design to connect: digital storytelling for support communication between people with dementia and caregivers

• Grant number: 18/19718-2
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Start date: February 01, 2019
• End date: May 31, 2021
• Field of knowledge: Applied Social Sciences - Industrial Design - Product Design
• Principal Investigator: Paula Costa Castro
• Grantee: Larissa Taveira Ferraz
• Host Institution: Centro de Ciências Biológicas e da Saúde (CCBS). Universidade Federal de São Carlos (UFSCAR). São Carlos , SP, Brazil
• Associated scholarship(s): 19/14706-9 - The role of augmented paper in dementia care, BE.EP.IC

Abstract

Cognitive decline and functional capacity changes that occur with the advancement of dementia have a major impact on the life of the person and their caregivers. As the condition progresses, the need for meaningful social interaction and support for care coordination becomes greater for all caregivers. Communication barriers arise, which increase the stress of the person with dementia and the caregiver, both in care home and at home care. A multi-sensory approach to interaction, such as digital storytelling, can be used to recall life-history activities, as well as informing their caregivers about the well-being of the person with dementia. Although digital storytelling is used in reminiscence therapy, it is not applied to communication and coordination of care in dementia, and little is known about elements that help develop a product to support this goal. The objective of the present study is to discover the elements to co-design a communication system based on digital narratives personalized by formal and informal caregivers who work in care home and home care. This will support the coordination of care and communication between health care staff, family members and people with dementia. Method: four groups of users (target audience) of the technology (10 formal caregivers working at care home / 10 formal caregivers working at home care/10 informal caregivers working at care home/10 informal caregivers working at home care) will participate in focus groups and digital storytelling workshops. The data will be analyzed using thematic analysis. Expected results: We hope to find the acceptability of using digital stories, but also to investigate aspects of use in practical matters. The product concept could indicate that technology plays an important role in promoting a model that transcends physical boundaries and creates a culture of transparency and coordination of care.