Continuing the Role: Lived Experiences of Family Caregivers after Placement of a Relative With Dementia in Residential Care

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.

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Publication Details

Journal
Dementia
Published
2026-09-10
DOI
https://doi.org/10.1177/14713012261486633
Primary Topic
Dementia and Cognitive Impairment Research
Type
article
Field-Weighted Citation Impact
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article

Continuing the Role: Lived Experiences of Family Caregivers after Placement of a Relative With Dementia in Residential Care

Siobhan Aaron, Carolyn Harmon Still, Samantha Meir, Kareem Khaled Fareed
Dementia
Dementia and Cognitive Impairment Research
article

Continuing the Role: Lived Experiences of Family Caregivers after Placement of a Relative With Dementia in Residential Care

Siobhan Aaron, Carolyn Harmon Still, Samantha Meir, Kareem Khaled Fareed
article en

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.

Dementia
Case Western Reserve University (US), Stanford University (US)
Openalex Percentile: Top 9%
Dementia and Cognitive Impairment Research
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