A Narrative Study Comparing the Experiences of Adult Family Members Who Are Providing Fulltime Care to Their Family Members with Early-Onset and Late-Onset Dementia

Abstract

This study employed a qualitative approach in exploring and comparing the experiences of adult family caregivers who are providing fulltime care to their family members with early-onset and late-onset dementia. The study aimed to explore the care arrangements/styles employed by family caregivers, the emotional and social impacts of caregiving, the influence of filial obligation in the decision to become caregivers, and the impact of current social perception and support (or the lack thereof) on family caregivers. The study was based on the narratives of family caregivers and was conducted through semi-structure in-depth interviews with two family caregivers who were currently providing care for their family member with dementia. The findings of this study highlight the multiple roles of caregivers, their coping strategies, and care styles. In addition to this, it was found that caregiving negatively affects the emotional health of caregivers and causes significant limitations in their social life. Their decision to be primary caregivers was largely a default decision than a result of filial obligation. The social environment is also found to be a cause of distress for caregivers because of the stigma surrounding dementia and dementia care.