Welcoming Death: Exploring Pre-Death Grief Experiences of Caregivers of Older Adults with Dementia

Abstract

The death of an older adult with dementia often has an uncertain dying trajectory and has been referred to as “the long goodbye.” Researchers have found both positive and negative outcomes of pre-death grief for caregivers of individuals with chronic illnesses. This qualitative study explored the end-of-life experiences for 36 bereaved family caregivers of older adults with dementia; focusing on understanding their experiences with pre-death grief. These caregivers shared experiences with the phenomenon of “welcoming death” and findings highlighted the primary reasons they anticipated, accepted, or wished for the death of their family member with dementia. With the overarching goal of improving bereavement outcomes and reducing feeling of guilt, inclusion of pre-death grief support services throughout the caregiving process are recommended.

Key Words:

• Grief/loss
• bereavement
• hospice
• end-of-life
• dementia
• caregiving
• pre-death grief