Caregiving Experiences as Mediators Between Caregiving Stressors and Anticipatory Grief in Severe Dementia: Findings From Longitudinal Path Analysis

Abstract

Objectives: Family caregivers of older adults with severe dementia often experience anticipatory grief. We aimed to investigate the temporal association of caregiving stressors (older adults' behavioral symptoms, and caregiver-older adult co-residence and emotional closeness) and caregivers' anticipatory grief, and its mediation by positive and negative caregiving experiences.

Design: Prospective cohort.

Setting: Singapore.

Participants: About 169 family caregivers of older adults with severe dementia were surveyed every 4 months for 4 years (up to 13 surveys).

Measurements: We measured anticipatory grief using the Marwit Meuser Caregiver Grief Inventory-Short Form, negative caregiving experiences using the Caregiver Reaction Assessment scale, positive caregiving experiences using Gain in Alzheimer Care Instrument and behavioral symptoms using the Cohen-Mansfield Agitation Inventory. We implemented a cross-lagged panel model to test mediation, a form of longitudinal path analysis.

Results: About 35% of the caregivers reported high anticipatory grief at least once during the study period. Older adults' behavioral symptoms had a significant direct effect (Standardized coefficient [95% confidence interval]: 0.12 [0.04, 0.21]) on caregivers' anticipatory grief. Negative experiences mediated the significant indirect effect of older adults' behavioral symptoms (0.16 [0.06, 0.25]) and coresidence (0.16 [0.07, 0.25]) on caregivers' anticipatory grief. Positive caregiving experiences did not mediate any path.

Conclusions: Findings indicate a temporal association between caregiving stressors and anticipatory grief, mediated by negative caregiving experiences. Routine screening for anticipatory grief, and interventions to address caregiver stressors and negative caregiving experiences may alleviate caregivers' grief.

Keywords: Severe dementia; anticipatory grief; behavioral symptoms; caregiving experiences; co-residence; cross-lagged panel mediation; emotional closeness.