Evidence for grief as the major barrier faced by Alzheimer caregivers: a qualitative analysis

Feelings of loss and grief are frequent companions for current Alzheimer's family caregivers. Increased acknowledgment and understanding of caregiver grief among researchers has led to more comprehensive explorations of the multifaceted nature of caregiver grief and loss. Absent from the literature, however, is an exploration of anticipatory grief as an actual barrier to the task of caregiving. Through an analysis of 353 open-ended survey responses, the present article explores links between anticipatory grief, ambiguous loss, and principal barriers that family members face as dementia caregivers across the state of Indiana. By drawing parallels between caregiver responses and the Marwit-Meuser Caregiver Grief Inventory subscales, this article illustrates that the fundamental barrier experienced by current Alzheimer's caregivers appears to be a combination of anticipatory grief and ambiguous loss rather than hands-on care issues. The implications of this finding for future caregiver research and interventions are discussed.