‘It’s Terrible to Think That Your Own Mother Doesn’t Know You’: Exploring Accounts of Caring for a Parent with Dementia

Objective: To explore the accounts of adult children caring for a parent with dementia. It is well documented that caring for a person living with dementia (PLWD) is stressful and generates depression and anxiety, but much research focuses on heterosexual spousal carers. This paper draws on data from the British Academy funded ‘Duties to Care’ and ‘Dementia Talking’ projects and focuses on challenges identified by adult children when caring for a parent with dementia.
Methods: Semi-structured interviews or focus groups were conducted with 11 adults caring for either a mother (n=9) or a father (n=2) with dementia. The mean age of participants was 58 (range 47-65). Data were analysed using thematic discourse analysis.
Results: The themes of 1) interactions with the PLWD that fracture or reconfigure normative familial relationships; and 2) sibling conflict and collaboration are discussed alongside how these caring dynamics are mediated by gender, social class, and locus of care (e.g., quotidian or remote).
Conclusions: This analysis suggests that, in the absence of a primary spousal carer, caring for a PLWD can necessitate particular issues for adult children that trouble notions of how we understand familial roles, responsibilities and ‘duties’. I suggest that foregrounding the experiences of this sub-set of carers may offer a critical lens on family dynamics and processes more broadly.