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a Washington University School of Medicine, St. Louis
b University of Missouri—St. Louis
Correspondence: Thomas M. Meuser, PhD, Alzheimer's Disease Research Center, Department of Neurology, Washington University School of Medicine, 4488 Forest Park Ave., Suite 130, St. Louis, MO 63108. E-mail: meusert{at}neuro.wustl.edu.
Decision Editor: Laurence G. Branch, PhD
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.
Key Words: Alzheimer's disease • Anticipatory grief • Caregiver stress
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