“He is changing, but I'm changing too”: An interpretative phenomenological analysis of spouse caregivers' identity in the context of dementia

Abstract

ObjectiveThis study explores the process through which informal caregivers, particularly spouses, construct their identity within the context of caregiving for individuals with dementia. Despite extensive research in psychology aimed at defining caregiving (e.g. tasks, consequences), few informal caregivers identify themselves as such. For instance, the affective bond shared between caregivers and care‐recipients often imbues caregiving responsibilities with a sense of “naturalness,” especially if the care‐recipient is a spouse.MethodsTo investigate the nature of caregiver identity construction, eight semi‐structured interviews were conducted with spouse caregivers of dementia patients. The collected data underwent interpretative phenomenological analysis (IPA).ResultsThree interconnected themes emerged from the analysis: (1) Perceiving changes in my partner, which involves recognising alterations in the care‐receiver's characteristics due to dementia; (2) Processing changes, encompassing the experience of grieving losses and reminiscing about the past; and (3) Perceiving changes in myself, referring to the acknowledgement of personal changes due to caregiving.ConclusionThe study emphasises the dynamic and ongoing nature of caregiver identity construction, which begins with the early recognition of changes in the care‐receiver. Interestingly, spouse caregivers oscillate between their identity as a spouse and caregiver, influenced by how they process changes undergone by their partner. Contrasting with previous theories on caregivers' identity, our results focus of caregivers' perceptions rather than their relationship with the care‐recipient or caregiving tasks.