Abstract
Background: Dementia has become a major public health issue due to its high prevalence and serious consequences. In this context, the use of Information and Communication Technologies (ICT) could provide support for communication between people living with dementia and their formal and informal caregivers, both locally and remotely. More specifically, multimedia communication in the form of digital story narratives might improve communication in such care networks through richer forms of expression of life experiences and care activities. Objective: To explore caregiver perspectives on the communication issues and requirements involved in caring for people with dementia at home, and their reactions to digital storytelling technology as a possible intervention. Method: Semi-structured interviews were carried out with ten community caregivers in a countryside town of Sao Paulo state, Brazil. Each involved discussion of communication issues, and feedback on a mobile digital storytelling app and associated stories. Results: Formal and informal caregivers were both concerned about how to understand and to be understood by the people they were caring for, and saw value in digital storytelling as a new kind of assistive communication tool for more visual communication. Caregivers also wanted better ways of capturing or stimulating memories and conversation in people with dementia and saw digital stories as an extension of current social media systems for sharing life experiences. Conclusion: One of the greatest challenges in caring for people with dementia is communication, especially to understand their feelings, frustrations, and language. Another major challenge is finding time to go beyond caring for their basic activities of daily living (ADL) to enhance their quality of life through more meaningful conversations and experiences. Requirements for new digital storytelling technology were suggested for each of these challenges.