A narrative inquiry into how care is enacted over time in families living with dementia

There is a tendency in caregiving research to centre the caregiver perspective. This limits understanding of dementia care as a relational process. Dyadic studies that include persons with dementia as active participants show families working together to sustain their connection. However, these studies typically involve couples and persons with early to mid-stage dementia. In this article, we examine how care is enacted over time in three intergenerational family dyads in which the parent is living with advanced dementia. Our methods incorporate a small stories research model of inquiry and an interview process that includes a dyadic interview designed as a joint storytelling activity. In our analysis, we watch for storylines that bring together small story data associated with particular care practices, which we map into a temporal sequence. To illustrate our findings, we discuss three storylines, one from each of the three participating dyads: ‘Engaged in our lives’ (Dyad 1); ‘We just always had fun’ (Dyad 2); and ‘From an uncaring place to a caring place’ (Dyad 3). By tracing the trajectory of particular care practices and by observing these same care practices in action during the dyad interviews, we were able to highlight a mutuality of contribution, whereby the contributions of participants with dementia were visible alongside those of their relatives. Our findings highlight the role played by familiar care practices in maintaining, continuing and repairing intergenerational family relationships as symptoms of dementia advance

Dementia · Dyad · Family caregivers · Narrative · Narrative inquiry · Qualitative research · Storytelling · Counseling, Therapy, and Family Dynamics · Dementia and Cognitive Impairment Research · Mental Health and Patient Involvement