A qualitative study on the subjective experience of prolonged care among family members of patients with moderate to severe dementia

Abstract

Objectives: To explore the family members' subjective experiences of prolonged care for individuals suffering from moderate to severe dementia and to provide evidence supporting the development of support strategies and precise interventions targeting this group.

Methods: A purposive sampling method was used to select family members of patients with moderate to severe dementia within the neurology department of a hospital in Chengdu City for face-to-face in-depth interviews. Data were analyzed using the seven-step analysis of data from the Colaizzi phenomenological study.

Results: Three main themes were identified in this study: (1) Pressures and burdens faced, (2) Lack of social support, (3) Positive changes. In addition, 11 sub-themes were extracted as the subjective experience of prolonged care among family members of patients with moderate to severe dementia.

Conclusion: The subjective feelings of families of patients with moderate to severe dementia about prolonged care are complex and specific. Family members face tremendous pressures, still lack social support, and lack coordinated communication among communities, families, and hospitals. In the future, we should learn from the practical experience of prolonged care in foreign countries, fully integrate with China's national conditions, promote the improvement of the prolonged care system for patients with dementia, accelerate the construction of community-based professional care institutions, gain a deeper understanding of the challenges and needs faced by family members, enhance their experience of care, improve their quality of life, and help the patients and family members to better pass through the stage of moderate-to-severe disease.

Keywords: Family members; Moderate to severe dementia; Prolonged care; Qualitative research; Subjective experience.