The role dilemma of family caregivers for people living with dementia: A qualitative study.

BACKGROUND

Against the backdrop of global aging, the number of people with dementia is surging, with home-based care as the dominant model. Family members take on the core caregiving responsibilities, yet the long course and complex symptoms of dementia plunge caregivers into multiple role dilemmas. Existing studies lack comprehensive analysis of these dilemmas, leading to low efficiency in the utilization of resources for support programs. Guided by Role Stress Theory and adopting a constructivist lens, this study shifts the focus from specific caregiving challenges to underlying role dilemmas, aiming to inform comprehensive support design.

OBJECTIVES

To comprehensively identify the types and manifestations of role dilemmas experienced by family caregivers of people living with dementia.

DESIGN

A qualitative narrative inquiry guided by constructivism.

SETTINGS: This study took place at the neurology department of a Grade A tertiary hospital in Xuzhou, China.

PARTICIPANTS

Purposive sampling was employed to select participants. 21 family caregivers of people living with dementia were finally interviewed.

METHODS

Semi-structured interviews were conducted from June to August 2025, using line-drawing tools to facilitate recall. Data were analyzed using a hybrid deductive-inductive thematic analysis approach based on Role Stress Theory.

RESULTS

Four themes and 12 sub-themes were identified: (1) Role Incapacity (poor psychological regulation, insufficient caregiving skills, lack of disease knowledge); (2) Role Conflict (intra-role, inter-role, and extra-role); (3) Role Overload (time, physical strength, energy); and (4) Role Rigidity (negative perceptions of institutions, traditional family culture, gender stereotypes).

CONCLUSION

Family caregivers of people living with dementia experience four role dilemmas that may be interrelated. These findings provide a comprehensive framework for developing targeted interventions to support caregivers in their role adaptation and alleviate care burden.