Dementia Caregivers' Preferences for Involvement in Delirium Care During Hospitalization

BACKGROUND: Nearly half of hospitalized adults with dementia develop delirium superimposed on dementia (DSD), which is associated with adverse outcomes. Family caregivers play an essential role in preventing, identifying, and responding to DSD, yet relatively little is known about how caregivers experience and respond to acute cognitive changes during illness and their preferences for involvement in DSD care. METHODS: We performed a qualitative study of caregivers (N = 22) for patients with dementia admitted to two hospitals within a single health system. Because caregivers may be engaged in DSD prevention prior to an episode of DSD, we included caregivers to patients with a history of delirium (N = 19) and without (N = 3). We conducted semi-structured interviews during hospitalization or within 1 week of discharge focused on caregiver experiences with acute cognitive changes during illness and preferences for involvement in DSD care. Interviews were analyzed using thematic analysis. RESULTS: Caregivers readily described experiences identifying acute cognitive changes during illness, but few were familiar with the term "delirium." Caregivers described navigating acute cognitive changes via common phases of (1) recognizing acute cognitive changes, (2) interpreting their meaning, and (3) deciding how to act. Some recognized and interpreted changes as normative in the context of dementia, while others expressed concern about the potential impact and seriousness of symptoms. Caregivers described several factors-perceived caregiving role and context, care priorities, delirium knowledge, and distress from delirium-that affected how they navigated symptoms as well as their preferences and motivations for involvement in DSD care. Participants reported substantial variation in factors that influenced their involvement in DSD care. CONCLUSIONS: Caregivers navigate and engage with acute cognitive changes during illness in heterogeneous ways, shaped by their preferences for involvement in care. Findings support flexible, caregiver-centered intervention strategies for DSD that recognize variability in caregiver roles, needs, and readiness for engagement.