Caregiver-Reported Barriers to Quality End-of-Life Care in Dementia With Lewy Bodies: A Qualitative Analysis

Objective: This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States. Methods: The study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care. Results: Thirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice. Conclusion: Many identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences.