LBDA website and search their support group database to find the group nearest you. If there isn't one near you, find the nearest one and call the listed facilitator. That person can probably tell you if there are any groups in your area that might work. If there is a large dementia treatment center near you, their staff are good resources. Also ask your doctor--or better yet, the nurse.
Next use your computer. Go to the Eldercare Locator and put in your zip code or your city and state. You will get a list of helpful agencies such as the Area Agency on Aging. Go to their Caregiver Corner to get some national results. Call the services that seem appropriate and ask them about LBD support groups. Finally, call the Alzheimer's and Parkinson's associations in your area and ask about LBD specific groups. Both may offer some, and lacking that can tell you which of their groups would be the most compatible.
The LBDA is a good starting point for online groups too, with their LBDA FaceBook Care Partner Support Group and Jim's favorite, the LBD CaringSpouses. You have to be the spouse of someone living with LBD to belong to that group but the first one is open to all care partners. The LBDA also has a Living with Lewy Facebook group, which is open only to those living with LBD.
Facebook now hosts four other LBD related support groups:
Lewy Body Dementia Carers
Lewy Body Support Group
Forget Me Not - Lewy Body Dementia
Lewy Body Dementia Caregivers Support Group
Incidently, in searching for support groups on FaceBook, I also found the following LBD-related FaceBook pages:
LBD Tools: our own, of course.
Lewy Body Dementia Association. The LBDA's FaceBook presence.
Lewy.ca Timothy Hudson's FaceBook page. He has a great blog
Lewy Body Dementia Beyond Diagnosis. By a person living with LBD.
Living with Lewy Body Dementia A daughter's journey with her father who is living with LBD.
Lewy Body Dementia Journeys. One family sharing their journey.
Lewy Body Dementia Awareness . A group that wants to raise awareness of LBD.
For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.