Since 2004 (16 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. We meet by disorder though the PSP and CBD groups are usually together. Contact us if you’d like to be added to the meeting reminder email list.
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, Anne, and Lynn
- PSP: Cristina and JD
- MSA: Candy, Barbara, Karen, Jan, and Doug
- CBD: Dick, Mindy, and Mark
These caregiver-only support group meetings are held on Sundays from 5pm to 7pm. The dates for our 2020 meetings are:
- January 26
- March 15
- April 26
- June 7
- July 12
- August 23
- October 4
- November 8
- December 6
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 2020 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 caregivers are invited: primary, secondary, those giving hands-on care, those managing care, and those giving emotional and informational support. 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.
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.
At two separate meetings in 2019, we welcomed people with a neurological diagnosis — 3 with MSA and 4 with PSP. Those with a diagnosis meet separately from caregivers. If you have a family member with MSA, PSP, CBD, or LBD, and they are interested in having dinner with others with the same diagnosis, please let me know AT LEAST ONE WEEK before each meeting. These extra gatherings take a bit of coordination.
We have over 450 members now, with attendance of 20-30 at caregiver support 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 2020!