Threats to personhood from within the family? A study of family caregivers of people with dementia in the Chinese context

Abstract

Background and Objectives Dementia care creates ethical and legal dilemmas due to the struggle to balance the quality of care and personhood. Disagreement and conflict in caregiving relationships are common. However, limited attention has been given to particular stressful circumstances, such as care practice and decision disagreements. Moreover, the cultural context of personhood has been overlooked. This study drew on Hong Kong family caregivers’ reports of their cargiving practice and disagreements with care recipients about care-related decisions and their implications for personhood to identify person-centered family care support needs. Research Design and Methods We conducted 18 semi-structured interviews with family caregivers of people with dementia in Hong Kong, China. Participants were asked to share their family dementia caregiving experience and practice, specifically regarding decisions and practices that elicited disagreement. We used thematic analysis to analyze data generated from interviews. Results Six caregiver practices were identified: exchange for mutual agreement, a foot-in-the-door approach, acceptance of requests/behaviors contrary to the caregivers’ views, infantilization, treachery, and exclusion and imposition. Discussion and Implications These findings highlight the importance of providing support and guidelines for person-centered care to promote personhood in the family caregiving context in dementia care.