Since 2004 (17 years!), we have convened nine support group meetings each year for caregivers of those with Lewy body dementia (LBD), progressive supranuclear palsy (PSP), multiple system atrophy (MSA), corticobasal degeneration (CBD), and atypical parkinsonism.
These are separate — yet simultaneous — meetings for each disorder, though the PSP and CBD groups are usually together. Among all of three simultaneous groups, attendance is 20-30 total. We welcome family/friend caregivers living in Northern or Central California. Contact us if you’d like to be added to the meeting reminder email list.
Of course during the COVID-19 pandemic, our groups are meeting virtually. Most participate with video, but it is perfectly fine to join by phone-only.
The discussion is led by caregivers who have lost their family members to these disorders. In most cases, the family member donated his/her brain and the diagnosis has been confirmed. (Brain Support Network can assist your family in making brain donation arrangements.) Discussion leaders include:
- LBD: Dianne, Sharon, Alexa, Cristine, and Lynn
- MSA: Candy, Barbara, Karen, Jan, and Doug
- PSP: Cristina, JD, and Robin
- CBD: Dick, Mindy, and Mark
These caregiver-only support group meetings are held on Sundays from 5pm to 7pm. The dates for our 2021 meetings are:
- January 24
- March 14
- April 18
- June 6
- July 18
- August 29
- October 3
- November 7
- December 5
In selecting these dates, we have avoided as many cultural events, sporting events, and holidays as possible.
Please put these caregiver-only support group meeting dates on your 2021 calendars now. An email requesting RSVPs will be sent out a week or so before each meeting. RSVPs are always due by noon on the Saturday (one day) before each meeting.
All family/friend caregivers are invited: primary, secondary, those giving hands-on care, and those managing care. Newcomers, casual visitors, and longtime attendees are all welcome! Former caregivers–those whose loved ones have already passed away–regularly attend. Former caregivers have been through it all and are invaluable resources to those learning to cope. (Our group is NOT intended for professional caregivers.)
If you are an active caregiver with a loved one at home, consider asking for a “respite care grant” from your county’s agency on aging or from your local caregiver resource center (see caregiver.org/californias-caregiver-resource-centers). Such grants pay for a caregiver to be in your home while you attend support group meetings. The Alzheimer’s Association (alz.org/norcal) also offers respite grants for those dealing with dementia.
We occasionally have guests. Guests have included a family consultant from Family Caregiver Alliance, a board member of the Lewy Body Dementia Association, and a board member of CurePSP.
We have over 450 members now, with attendance of 20-30 at caregiver support group meetings (among the three simultaneous group meetings). Roughly speaking, of the 450 members, 50% have an LBD connection, 30% have a PSP connection, 18% have an MSA connection, and 2% have a CBS/CBD connection or Atypical Parkinsonism connection. (I believe we have the largest PSP, LBD, and MSA local support groups in the US.) If you have suggestions on how we can get the word out about our group, let me know!
We look forward to seeing you at some meetings in 2021!
By the way, if your family member with a neurological diagnosis of MSA, PSP or CBD would like to meet virtually with others, let us know. We will try to arrange this.