Negotiating the caring role and carer identity over time: ‘living well’ and the longitudinal narratives of family members of people with dementia from the IDEAL cohort

Abstract

Longitudinal studies can provide insights into how family members negotiate the caring role and carer identity over time. The analyses of the longitudinal, qualitative interviews on ‘living well’ with dementia from the IDEAL cohort study aimed to identify the shifting, embedded narratives of family members of people with dementia as they negotiated the caring role and carer identity over time. Twenty semi-structured, qualitative interviews were conducted with family members of people with dementia and 14 were repeated one year later; these interviews were analysed using cross-sectional and longitudinal thematic and structural narrative analyses. Longitudinal, interrelated themes, including the care needs and decline of the person with dementia, relationship change and variable service support, framed the narrative types of family members. Six shifting narratives, apparent as dominant and secondary narrative types, characterized negotiating the caring role over time: absent/normalizing, active role adoption / carer identity, resistance, acceptance and resignation, hypervigilance/submergence and role entrapment, and foreshadowed future. The presence or absence of a carer identity was also evident from interviewees’ accounts, although, even where family members were overburdened by the caring role, they did not necessarily express a carer identity. Rather than considering transition into a carer identity, hearing different narratives within the caring role is important to understand how family members experience caring, whether they see themselves as ‘carers’, and when and how they need support. Timely and continued post-diagnostic support, where different caring narratives are recognized, is needed, as well as international initiatives for carer identification.