Exploring the multidimensionality of home-based dementia caregiving and related challenges based on digital journaling and interviews

Abstract

Background: Home-based dementia caregiving is often complicated and may be fragmented due to differences in caregiver roles, needs, preferences and caregiving circumstances. The complex structure of informal caregiving and inadequate support result in negative health outcomes among informal caregivers. Prior methodologies appear to lack a systematic capture of the critical features and intricate structures of home-based dementia caregiving. Objectives: To characterize dimensions and delivery frequencies of dementia caregiving tasks provided by family members and explore how caregivers framed their everyday challenges related to providing dementia care and support at home. We evaluated the value of digital journaling (caregiver journaling with a messenger app) as a novel data collection technique to better characterize informal dementia caregiving in the home setting. Methods: We incorporated multiple data sources from family caregivers, including qualitative interviews, digital journals over four weeks and self-report caregiver and care recipient characteristics to characterize dimensions, types and frequencies of home-based dementia care tasks and explore caregivers’ challenges and coping to adapt to the changing caregiving situations. Ten family caregivers completed qualitative interviews and digital journaling. Results: A content analysis of 124 journal entries and a thematic analysis of 20 qualitative interviews show that caregivers offered assistance that extended far beyond activities of daily living (ADL) and instrumental ADL. The key themes identified centred around how caregivers shape caregiving tasks, their personas and caregiving strategies while performing multiple roles, as well as the emotional toll of being a caregiver in the face of maintaining coping and resilience. Conclusions: The study suggests the use of novel methodology to characterize home-based dementia caregiving and to identify day-to-day care delivery challenges to increase our understanding of how to better support family caregivers. Implications for Practice: Nursing interventions aimed at improving informal caregivers’ well-being need to focus on understanding the dynamic nature of caregiving roles and responsibilities, and the evolving needs of caregivers and care recipients.