The objective of this study was to “investigate the experiences of caregivers three months after the death of persons” with dementia with Lewy bodies (DLB). Seventy-three caregivers participated, mostly women and mostly spouses.
Results were recently published. Researchers found:
Over 40% had scores indicating risk for clinical depression. Post-death caregiver experiences (depression, quality of life, grief, resilience) correlated with pre-death caregiver experiences. Post-death experiences did not associate with patient characteristics, disease-related symptoms, or healthcare services used in the last 6 months of life. Trajectories for caregiver measures from pre- to post-death visits varied widely. Interview themes included grief and sadness, anger, guilt and regret, relief, appreciation/gratitude, and adjusting to a new normal.
In our local DLB caregiver support group, we discuss some of these same themes while the LBD loved one is still alive — grief and sadness, anger, guilt and regret. We love that in the study additional themes come out post-death — appreciation and gratitude. Many of our DLB caregiver group members continue to be part of our local support group, sharing their wisdom.
Read the abstract: [the full article requires payment]
Sage Journals: Caregiver experiences after the death of a person with dementia with Lewy bodies