ArticleBMC geriatrics2026
The experience and coping of decision-making dilemma of family caregivers of elderly patients with moderate to severe dementia: a qualitative study.
Article in BMC geriatrics, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
introductionDementia 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.
methodsA 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.
resultsThis 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.
conclusionFamily 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.
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