PRE-DEATH GRIEF IN FAMILY CAREGIVERS OF PERSONS WITH DEMENTIA AND ITS EFFECT ON CAREGIVER DEPRESSION

Abstract

Caregivers of persons with dementia (PWD) can experience loss and grief long before the death of the person, with such experience highlighted in the literature as a key challenge in dementia caregiving. In this thesis, we first culturally-adapted the scales to measure the experience of loss and grief (also known as pre-death grief, PDG) among family caregivers of PWD in Singapore. Then, we demonstrated that PDG can be a distinct experience from that of caregiver burden, and that PDG can have an impact on dementia caregiving independent of caregiver burden. We also showed that PDG may not be uncommon in dementia caregiving, though it may not be easily detected by healthcare workers (due to the disenfranchised nature of PDG). The findings highlighted the need for routine screening of PDG in clinical practice, raising awareness on PDG among healthcare workers, and further research to develop culturally-appropriate interventions for PDG.