Cause of Death and End‐of‐Life Experiences in Individuals with Dementia with Lewy Bodies

Objectives To investigate the natural history, cause of death, and end‐of‐life experiences of individuals diagnosed with dementia with Lewy bodies (DLB). Design Twenty‐question online survey administered through the Lewy Body Dementia Association. Setting United States. Participants Caregivers, family, and friends of individuals who died in the past 5 years with a diagnosis of DLB (survey respondents: n = 658, 89% female, median age 50–69). Measurements The survey included 3 questions about the respondent's background and 17 about the end‐of‐life experiences of the person with DLB. Topics included time from symptom onset and diagnosis to death, cause of death, advance directive completion, end‐of‐life education, hospice use, and location of death. Results were analyzed descriptively. Results Most individuals with DLB died within 5 years of diagnosis (median 3–4 years). Respondents indicated that physicians rarely discussed what to expect at the end of life (40% total, but only 22% to a helpful degree) and that the caregiver usually initiated such conversations. Death was usually expected, but fewer than half of respondents felt prepared for what to expect. Seventy‐eight percent used hospice, usually at home or in skilled care, with wide variations in duration. Failure to thrive was the most common cause of death (65%), followed by pneumonia and swallowing difficulties (23%), other medical conditions (19%), and complications from falling (10%) (multiple causes allowed). Conclusion Study results highlight a critical need for better prognostic counseling and education for persons and families living with DLB. The results of the current study can inform such counseling, but additional studies are needed to further explore expected prognosis of individuals diagnosed clinically with DLB and optimal use of palliative care services. J Am Geriatr Soc 67:67–73, 2019.