What we can learn from each other: a multi-sited analysis of lay expertise and caregiving for people living with alzheimer's and dementia in emilia-romagna and the united states

This dissertation explores how informal caregivers in Emilia-Romagna, Italy, and the Midwest, United States develop lay expertise when caring for individuals with Alzheimer’s Disease and Related Dementias (ADRD). Using multi-sited ethnography, it draws on in-depth interviews, participant observation in support groups, netnographic analysis of online caregiver forums, and secondary data from the National Study of Caregiving. Grounded theory highlights central themes: biographical disruption, the process of “becoming” a caregiver, and the fusion of practical skills with emotional intelligence. Lay expertise is framed as evolving knowledge, blending experiential, embodied, formal, and evidence-based elements to address caregiving’s complex demands. Findings show caregiving often triggers a profound life shift, requiring emotional resilience and logistical flexibility. Caregivers continuously learn by doing, experiencing both triumphs and setbacks. Support groups and online forums play pivotal roles, helping reduce burden, foster self-efficacy, and cultivate peer-to-peer learning. By employing situational analysis, this research examines the social ecologies of caregiving, revealing how cultural norms, healthcare systems, social networks, and non-human actors intersect to shape caregivers’ experiences. It argues that lay expertise extends beyond technical competence, emphasizing empathy, personal growth, and reflexive awareness of one’s own limits. Caregivers who thrive actively seek support and prioritize self-care. Ultimately, this dissertation contends that lay expertise is neither secondary nor inferior to professional knowledge. Rather, it is a vital, nuanced way of knowing, emerging from the lived realities of caregiving. Recognizing caregivers as key agents in dementia care challenges traditional power dynamics in healthcare, calling for policies and practices that empower this essential role. By centering caregivers’ voices, the study provides valuable insight into the intricate interplay between individual narratives, social support structures, and healthcare systems, underscoring the need to validate and uphold the expertise gained through the caregiving journey.