Muslim caregivers’ experience of home caring for a family member with advanced dementia

M.A. (Clinical Psychology)Families, most commonly the adult daughters, provide the majority of informal caregiving. Research has focused on the negative implications of being a home caregiver to someone with an illness such as dementia, with very few studies considering the positive aspects that are associated with caregiving. This phenomenological study seeks to gain a deeper understanding into the holistic experience of Muslim women who are the primary home caregivers of a family member who has been diagnosed with dementia. Furthermore, this study contributes to the growing body of caregiving literature by considering the cultural context in which caregiving occurs. The sample is composed of three Muslim home caregivers of a family member living with dementia. Semi-structured interviews were used to obtain an in depth account of the participants’ experiences of caregiving. Data received for this study was analysed in accordance with Smith and Osborn’s (2008) steps for the method of interpretive phenomenological analysis. Themes that have emerged from the study include 1) understanding the condition; 2) reorganisation of life and the change of attitude towards caregiving; 3) social support; 4) strengthening the relationship with God and spiritual growth; 5) decision to care for the family member at home; and 6) anger and forgiveness. Through the interpretation of these themes, it was found that the caregivers’ cultural and religious values were deeply rooted and that the caregiving process can be transformed from a negative experience into a positive and meaningful experience provided that the caregiver changes their attitudes regarding their role and situation. Future research needs to be conducted to understand the various cultural contexts that influence the caregiving process