Lived experiences of Iranian family member caregivers of persons with Alzheimer’s disease: caring as ‘captured in the whirlpool of time’

Abstract

This study aimed to understand the experiences of Iranian family caregivers of persons with Alzheimer's disease. Increasing rate of Alzheimer's disease along with the ageing population has made this disease an urgent public health challenge worldwide. As non-professional caregivers, family members play a significant role in delivering care to elders, most of whom have one or more chronic diseases. Family-based caregiving has expanded with the encouragement of non-institutionalisation but at the same time creates challenges for caregivers. A qualitative study was conducted using Heideggerian hermeneutic phenomenology. Eight Iranian family caregivers of persons with Alzheimer's disease were interviewed. Interviews were audio-taped and transcribed; data were analysed by Van Manen's methodology. One of the most important themes that emerged was 'captured in the whirlpool of time', which also contained the subthemes of 'reminiscence of past' and 'being afraid of the future'. Family caregivers frequently remembered their common past experiences when interacting with their loved ones with Alzheimer's disease, as though travelling with him/her to the past. Furthermore, caregivers continually compared the past abilities of their relative with their present condition, which resulted in feelings of loss and regret. Further, the unpredictable nature of Alzheimer's disease created fear about the future deterioration of the condition and caregivers' future suffering. The findings demonstrated the necessity of providing continuous education and support for family caregivers of persons with Alzheimer's disease. Nurses are among front-line professionals who are in a position to support and provide information for family caregivers of persons with Alzheimer's disease.