Brain Support Network (BSN) was proud to co-host a panel discussion with Family Caregiver Alliance (FCA) about Lewy body dementia (LBD). The panel discussion followed the showing of the film “SPARK: Robin Williams and his Battle with Lewy Body Dementia,” produced by the Lewy Body Dementia Association (LBDA).
One unique aspect of FCA’s and BSN’s panel discussion on June 30th is that it featured two caregivers to those with Lewy body dementia, where the LBD diagnosis was confirmed through brain donation. Those caregivers -- Dianne Weitzel and Denise Dagan -- are part of the local San Francisco Bay Area LBD caregiver-only support group run by BSN. Additionally, the panel included Dr. Bruce Miller of UCSF’s Memory & Aging Center, who was featured in the film.
The film delved into the known science and research of the disease, getting a diagnosis, and the impacts to the person with LBD and their family caregiver. The panelists discussed:
* The confusing terminology - Lewy body dementia, diffuse Lewy body disease, Parkinson’s disease, dementia with Lewy bodies
* What percentage of people with Parkinson’s Disease go on to develop Lewy body dementia?
* Why was it hard for Robin Williams to receive a diagnosis of Lewy body dementia (while he was alive)? And what’s being done to educate physicians?
* Process of getting a diagnosis, the value in getting a diagnosis, the difficulty of getting a diagnosis when there are only psychiatric symptoms, family members’ reactions to the diagnosis, and the process of meeting with physicians
* Treatments for Lewy body dementia
* Symptoms of LBD including REM sleep behavior disorder, delusions, and fluctuating cognition
* Brain donation
* Optimism due to ongoing research
Both LBD caregivers mentioned the value of joining a local support group. We encourage everyone to find a local support group near you - whether it be for Lewy body dementia or Parkinson’s disease. One of the caregivers even participated in an Alzheimer’s disease group.
After the film and panel discussion, Family Caregiver Alliance (caregiver.org) shared an LBD resource list with attendees. For a link to that resource list as well as extensive notes from the panel discussion, see this blog post on the BSN website:
www.brainsupportnetwork.org/l...
24 июл 2024
