There is a critical need for better prognostic counseling and education for persons and families living with dementia with Lewy bodies (DLB), according to a recent study that included caregivers, family, and friends of individuals who died in the past 5 years with a diagnosis of DLB (n = 658, 89% female, median age 50–69). Survey 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. Researchers found:

• 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.
• 78% 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%).