The challenges of dementia care and the (un)making of meaning: Analysis of an online forum on carer spirituality

Abstract

Although one writer has called dementia ‘the theological disease’, there has been remarkably little research on how people with dementia and their carers find spiritual meaning and significance in their experience. While there is a significant body of literature examining the role of existing spiritual or religious beliefs and practices in supporting the carer of a person with dementia, there is very little research which offers an insight into the reverse process: how the experience of caring challenges a carer’s sources of spiritual or religious meaning, and what strategies are adopted to resolve the experienced tension between belief and experience. The present study aimed to supplement this incomplete picture by examining the archive of an online forum responding to a request for ‘thoughts which lend a spiritual perspective to going through dementia’. Interpretative Phenomenal Analysis (IPA) was undertaken on two levels. First, attention was focussed on the forum as an integrated discussion, identifying its recurrent and superordinate themes. The contributions of selected individual participants were then analysed to further examine the way in which their positions were developed. The analysis uncovered the importance which at least some carers of people with dementia attached to spiritual perspectives, as supplying strength for and meaning to the challenges they faced; but also how meaning was undermined by their experience. Few participants identified with traditional religious resources, but attempted to find meaning by reflection on their personal narrative. Six distinct types of response to the initial question were identified. These findings indicate that the wellbeing and resilience of at least some carers may benefit from validation of their spiritual concerns along with sensitive and attentive spiritual support. In this task, a key resource is their reflection on their personal narrative in relation to current challenges.