Purpose: Grief is an overlooked but important element of the caregiver experience. This study defines a model of caregiver grief to aid in clinical intervention and to support further research.
Design and methods: This study addressed the grief responses of 87 spouse and adult-child caregivers of patients with progressive dementia representing mild, moderate, severe, and postdeath. Questionnaire data and qualitative findings from 16 semistructured focus group interviews provide the basis for a descriptive model of anticipatory grief in dementia caregiving.
Results: Significant differences emerged between spouse and adult-child caregiver groups as a whole and as a function of Clinical Dementia Rating impairment level. Caregiver grief was found to fluctuate between intellectual, affective, and existential poles depending upon current care demands and expectations.
Implications: These findings suggest that anticipatory grief in dementia caregiving is "real" grief, equivalent in intensity and breadth to death-related grief.