Continuing the Role: Lived Experiences of Family Caregivers after Placement of a Relative With Dementia in Residential Care.
TL;DR
It is suggested that caregiving continues in sustained and multidimensional ways after residential placement and residential care settings should recognize family caregivers as ongoing partners and provide structured orientation, clearer communication pathways, and psychosocial support to address the emotional, cognitive, and relational demands of post-placement caregiving.
Abstract
Placement of a relative with Alzheimer's disease and related dementias (ADRD) in residential care is often assumed to reduce caregiver burden. However, little is known about how informal caregivers experience their role after placement. This descriptive phenomenological study explored the lived experiences of 9 informal family caregivers whose relatives with ADRD resided in residential care settings. Semi-structured interviews lasting 60 to 120 minutes were conducted and analyzed using Colaizzi's method to identify the essential structures of post-placement caregiving. Brief quantitative measures, including the CES-D-10 and the Caregiver Self-Assessment Questionnaire, were collected to contextualize participants' emotional burden. Six themes emerged: emotional dissonance after placement, cognitive load and decision fatigue, persistence of caregiver identity and responsibility, fragmented systems and resource gaps, crisis-driven transitions, and the need for post-placement support. Participants described caregiving after placement not as an endpoint, but as a reconfigured role marked by ongoing emotional labor, vigilance, advocacy, and decision-making. Although physical caregiving tasks had shifted to staff, caregivers remained deeply involved in monitoring care quality, managing communication, responding to crises, and serving as the primary emotional anchor for their relatives. Quantitative findings reinforced these accounts, with all participants scoring above the CES-D-10 clinical threshold and reporting substantial caregiver distress. Taken together, the findings suggest that caregiving continues in sustained and multidimensional ways after residential placement. Residential care settings should recognize family caregivers as ongoing partners and provide structured orientation, clearer communication pathways, and psychosocial support to address the emotional, cognitive, and relational demands of post-placement caregiving.