Ye Ouyang, Xiyi Liu, Ying Chen, Zhenfei Chen, Chunyu Cheng, Naixin Kang, ZiJian Wen, Liping Wang
Family caregivers of patients with moderate to severe dementia often face various types of decision-making dilemmas during the care process. Both society and families should provide timely and appropriate formal and informal support to reduce the intensity of decision-making conflicts and improve the quality of care. Moreover, decision-making models that feature implicit patient participation should be explored to optimize the family caregiving decision-making process.
INTRODUCTION: Dementia in older adults is characterized by a prolonged disease course, high disability rate and irreversibility, which impose a heavy burden on patients' families. Family caregivers often face complex decision-making dilemmas when they make various decisions on behalf of patients. However, the existing literature has not sufficiently examined the current situation and specific features of these decision-making dilemmas among family caregivers of older adults with moderate to severe dementia.
METHODS: A total of 14 family caregivers of elderly patients with dementia were recruited from a tertiary hospital in Zhanjiang City, Guangdong Province, China, between October 2025 and February 2026. Study participants were selected using purposive sampling combined with the principle of maximum variation. Qualitative data were collected through face-to-face interviews, analysed using thematic analysis, and managed with the assistance of NVivo 15 software.
RESULTS: This study identified the current status and lived experiences of decision-making dilemmas faced by family caregivers of patients with moderate to severe dementia during the care process. The interviews revealed three core themes: (a) the dilemma of trade-offs between multiple value goals and limited resources; (b) the dilemma of negotiation among medical authority, family cognition and uncertainty; and (c) the dilemma of adjustment between emotional involvement, relational tension and rational decision-making.
CONCLUSION: Family caregivers of patients with moderate to severe dementia often face various types of decision-making dilemmas during the care process. Both society and families should provide timely and appropriate formal and informal support to reduce the intensity of decision-making conflicts and improve the quality of care. Moreover, decision-making models that feature implicit patient participation should be explored to optimize the family caregiving decision-making process.