The lived experience of caring for a family member with dementia : a qualitative study

Abstract

The aim of this interpretative phenomenological analysis is to elucidate the experience of caring for a family member with dementia. Semi-structured interviews were conducted with six caregivers (four females, two males). Four of the caregivers were the child (three daughters, one son) and the others were the spouses (one husband, one wife) of a relative with dementia. The interviews were audio-recorded, transcribed verbatim and analysed. The findings suggest that the caregivers' life changed dramatically from the moment their relative was diagnosed. Different factors determined why caregivers decided to pursue this role. As time passed, caregivers became so immersed with their relative's care, sometimes even at their own expense, that they experienced a downfall in their overall quality of life. As dementia progressed, the caregivers experienced several kinds of losses with caregivers grieving mostly the psychological loss of their loved one. Despite this tough situation, caregivers managed to cope effectively and identified several positive aspects of caregiving. These findings will be discussed in light of the literature review. Recommendations for future research and practice will also be discussed.