FC25: Family Caregivers’ Perceptions of Expressed Emotion Toward Dementia Patients: A Qualitative Descriptive Study

Abstract

Objectives: This study aims to explore the perceptions of family caregivers regarding their expressed emotions (EE) towards dementia patients and to identify factors associated with high and low EE.

Methods: We conducted qualitative descriptive research through semi-structured interviews with 64 family caregivers of dementia patients, regardless of cohabitation status, from 2021 to 2022. Each caregiver participated in three one-hour interviews over three months. We used the Family Attitude Scale (FAS), a validated 30-item, 5- point Likert scale, to measure EE. Higher scores indicate more critical emotions toward the dementia patient, with a maximum score of120. Based on expert advice and data distribution, we set a cutoff point at 40; scores above 40 indicate high EE, while scores of 40 or below indicate low EE. Interviews focused on the caregivers’ challenges, sources of encouragement, and support systems. Transcripts were analyzed using thematic analysis. The study received approval from the Clinical Research Ethics Committee of Osaka University Future MedicalCenter.

Results: High EE caregivers (scores above 40) reported themes such as: poor pre-existing family relationships, lack of a confidant, severe behavioral and psychological symptoms of dementia (BPSD) in the patient, unemployment, low self-esteem, involvement in toileting assistance, inadequate explanations from physicians, and a tendency to reject public support. Additional themes included feelings of frustration and helplessness, lack of emotional support from other family members, and increased caregiver burden due to high care demands. In contrast, low EE caregivers (scores of 40 or below) highlighted themes including: respect for the care recipient, having multiple confidants, mild BPSD in the patient, employment, cooperation from supporters, and a sense of gratitude for caregiving. Further themes identified in this group were effective communication with healthcare professionals, active engagement in caregiver support groups, higher levels of resilience and coping strategies, and a positive outlook on the caregiving role as a meaningful and rewardingexperience.

Conclusions: The study identified distinct factors associated with high and low EE among family caregivers of dementia patients. Understanding these factors can help tailor interventions to support caregivers, improve their emotional well-being, and enhance the quality of care for dementia patients.