The loss of a shared lifetime: a qualitative study exploring spouses' experiences of losing couplehood with their partner with dementia living in institutional care.

AIMS AND OBJECTIVES: To explore and describe spouses' experiences of losing couplehood with their dementia-afflicted partner living in institutional care. BACKGROUND: Despite the losses and experiences of discontinuity due to the cognitive decline caused by dementia, the feelings of belonging and reciprocity in close relationships are still crucial to many couples. However, these experiences of spouses with partners living in institutional care are not well documented and are thus the focus of this study. DESIGN: A constructivist grounded theory approach was used to capture the relational processes described by the spouses. METHODS: Conversational interviews were conducted with n = 10 spouses of dementia-afflicted persons living in institutional care. Data were analysed using the constant comparative method. RESULTS: The spouses' experiences of losing couplehood were primarily connected to separation from the partner and the sense of being alone. They were also related to the loss of the shared past and future. However, these experiences did not seem to be constant; short glimpses of connectedness, reciprocity and interdependence contributed to a feeling of couplehood, although these were only momentary. CONCLUSIONS: The spouses' experiences of losing couplehood were dynamic and were related to the couple's entire life. The spouses wavered between senses of loss and belonging to couplehood, depending on the conditions characterising the moment. RELEVANCE TO CLINICAL PRACTICE: Healthcare personnel must recognise the severity of some spouses' experiences of losing couplehood and be aware of how these experiences can fluctuate and be situation dependent.