A comprehensive, stage-sensitive model of grief in dementia caregiving.

Abstract

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. 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. 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. These findings suggest that anticipatory grief in dementia caregiving is "real" grief, equivalent in intensity and breadth to death-related grief.