“Dementia quality measures recommend ‘comprehensive counseling regarding ongoing palliation and symptom management and EOL [end of life] decisions within 2 years of initial diagnosis or assumption of care,’ but only 22% of families of individuals who died with DLB [dementia with Lewy Bodies] reported a helpful conversation with physicians regarding what to expect at the EOL.” [references omitted]

— Armstrong, Melissa J et al. “End-of-Life Experiences in Dementia with Lewy Bodies: Qualitative Interviews With Former Caregivers.” PloS One vol. 14,5 e0217039. 30 May. 2019, doi:10.1371/journal.pone.0217039

Perhaps that’s because physicians have little to offer.

What’s the course of treatment? 

Here’s the only drug tested on LBD patients that shows some promise of slowing the progression of the disease.  Here’s something that may help you sleep but may exacerbate other symptoms.  Oh, and those increasingly frequent hallucinations?  Keep in mind that typical antipsychotics can cause severe reactions in LBD patients.  

Stages of the disease?

 Unfortunately, there are no clear stages of LBD. 

Prognosis? 

Patients typically survive five to eight years after diagnosis, but that’s variable; survival time may be two to twenty years.  Any other questions?