Coping with Loss in Caregiving: Comparing the Experiences of Dementia Family Caregivers and Parents of Medically Complex Children.

Abstract

Applying the dual-process model of coping with bereavement, we examined how dementia family caregivers and parents of medically complex children (MCC) experience and cope with loss on a daily basis. Integrating caregiving experiences at both ends of the lifespan revealed largely similar experiences of loss in caregiving as well as nuanced differences in grieving and coping. Using interview data from 26 dementia family caregivers and 26 MCC caregivers, the analysis revealed that both types of caregivers experience loss-orientation, restoration-orientation, and communication-based triggers that move them between the two. For dementia and MCC caregivers, loss-orientation centered on the loss of their expectations for their lives and relationships. Restoration-orientation involved reframing, perspective taking, self-growth, and finding a "new normal." Loss triggers included lack of understanding from others, worsening of the medical conditions, and social comparison. Restoration triggers included social support and improvements in the patient's condition or demeanor.