Exploring how family caregivers of people with Alzheimer's disease experience role captivity: A qualitative study.

Abstract

Background: Family caregivers of people with Alzheimer's disease often find their caregiving role intensely encompassing, which could lead to other areas of their experience being constrained or to "role captivity." The impact of role captivity on family members warrants further exploration. This study aimed to investigate the experiences of role captivity among family caregivers of people with Alzheimer's disease and analyze the causes of role captivity.

Methods: Semi-structured interviews with family caregivers of people with Alzheimer's disease in the neurology and geriatrics departments of a hospital in Hunan Province, China, were conducted from May 2024 to August 2024. The data were analyzed using a reflexive thematic analysis.

Results: Fifteen family caregivers of people with Alzheimer's disease were interviewed. Three themes were identified: 1) complex and shifting emotional experiences; 2) social, work, and lifestyle changes within role captivity; and 3) role captivity formation shaped by caregiving responsibilities and family finances.

Conclusion: Amongst family caregivers in our study, role captivity was a prominent concern. It can be manifested through internal emotional impact and external social, work, and life changes. The analysis found that lack of family support, too much caregiving responsibility falling on the family caregiver, and financial strain were significant contributors to role captivity. Suggestions were made for primary care having an important role in managing diseases and reducing disease burden.