Our very own Denise Dagan addressed the Lewy body dementia caregiving journey following the virtual screening of the new Robin Williams documentary “SPARK” in late June.  The event was co-hosted by Brain Support Network and Family Caregiver Alliance.  The recording is now available. 

The educational film “SPARK” is about Robin Williams and Lewy body dementia (LBD).  The film was created by the Lewy Body Dementia Association and the producers of an earlier film “Robin’s Wish.”

Brain Support Network (brainsupportnetwork.org) co-hosted with Family Caregiver Alliance (caregiver.org) a virtual screening on June 30.  After the 40-minute film, there was a 45-minute panel discussion featuring:

• Bruce Miller, MD, director of the UCSF Memory & Aging Center,
• Dianne Weitzel, leader of the local SF Bay Area LBD caregiver support group, and 
• Denise Dagan, volunteer with Brain Support Network (BSN) and leader of the Stanford Parkinson’s Disease caregiver-only support group in Los Altos.

Dr. Miller is featured in the film “SPARK” as an expert on LBD. Dianne and Denise are long-time members of BSN’s local LBD caregiver-only support group meeting.   Dianne’s husband Gary died several years ago; LBD was confirmed through braindonation. Denise’s father Harry died several years ago; LBD was confirmed through brain donation. (The brain donations were both arranged by Brain Support Network. Note that LBD is confirmed through brain donation less than half the time.)

During the panel discussion, Dianne and Denise shared their experiences with hallucinations, delusions, fluctuating cognition, and dementia-related behavior. 

Check out the panel recording here as well as a list of recommended resources on Lewy body dementia.