Caregivers’ Perspectives Towards Goals of Care and End-of-Life Issues in Egyptian Elderly with Dementia Attending Geriatric Hospital

Abstract

Background : Pre-discussion of goals of care specially at end of life in dementia is not a common practice in Egypt. Aim : The aim of the current study is to determine caregivers’ perspectives towards goals of care and end of life issues in moderate to severe and severe dementia patients. Methods: A questionnaire was applied on 101 caregivers about perspectives of caregivers of moderate to severe and severe dementia patients toward goals of care and end of life issues. Results: No one of caregivers had previous training for dementia care or discussed dementia care goals or end of life issues with healthcare providers. Perspectives towards goals of care was 60.4% preferred decreasing patient suffering, 39.6% preferred preserving patient function. No one chose life prolongation as a goal of care. Regarding end of life care, 98% of caregivers accepted mechanical ventilation, 90.1% accepted using pain killers, 74.3% accepted using feeding tube and 97% accepted CPR at late stage. There was significant relation between duration since dementia was diagnosed (>1 year) and choosing nursing home for sleep problems and feeding problems. Conclusions: Egyptians caregivers’ perspectives towards goals of care and end of life issues chose to decrease suffering of patients and improve their quality of life rather than prolonging their life span in late stages of dementia. Educational level and caregivers’ relation with the patients didn’t influence caregivers’ perspectives towards end of life issues yet it slightly affected goals of care .