LBD Support Groups
Internet Support Groups
A place for LBD caregivers to meet and share.
LBD Mail Groups (Yahoo)
- LBD caregivers email group. Click here to join.
- LBD caring spouse email group (spouses only). Click here to join.
Please note that the volume of e-mail is sometimes heavy in the Yahoo groups. Selecting the digest option will send up to 25 messages in one e-mail reducing the number of e-mails you receive.
LBD Chat (LBDA)
- LBDA chat room for caregivers. Click here to register.
Local Support Groups
Our current local support groups are listed below by state (USA) or Canadian province. All support groups are led by LBDA volunteers, except those with an asterisk (*) following the city name. These other groups welcome LBD caregivers, but are not affiliated with the LBDA.
To contact the LBDA about starting a LBD support group in your area -or- if your support group is not listed here, send an e-mail to lendahand@lbda.org.
If you are interested in attending a local LBD support group in a location not currently listed, please check back often.
Alabama
- NW Florida/SE Alabama LBD Caregivers Support Group
When: The second Tuesday of each month, from 12:00 p.m. - 1:30 p.m. Note: meetings temporarily on hold. Call or e-mail for date of the next meeting.
Where: Treasures Galore, 1700 Fairfield Drive South, Pensacola, FL 32507.
Directions: From Navy Blvd going towards Naval Air Station, turn right onto Gulf Beach Hwy. At the first traffic light is Fairfield Drive South, turn right. (*) 1700 is the 4th lot on right. Park on Graupera, which is the first road on the right.
From the Blue Angel Walmart, turn left onto Gulf Beach Hwy. At the first traffic light is Fairfield Drive South, turn left. Continue following the directions above, beginning with the (*).
From Fairfield Drive, cross over 98. About 1/2-1 mile down Fairfield on the left side, look for the Treasures Galore sign on the side of house at the corner of Graupera and Fairfield. Continue following the directions above, beginning with the (*).
Notes:- Loved ones are welcome, but please call ahead so we can be sure to have a caregiver there.
- There is not a wheelchair ramp into the shop at this time, but there are only two steps (one to the deck and one to the house).
- There are cats at this location.
Contact: Sharon Murray, 850.456.4645 Treasures Galore or 850.232.7389 mobile.
California
- Irvine Area Caregiver Support Group
When: First Wednesday of each month, 9:30 - 11:30 a.m. (RSVP recommended for parking permits)
Where: University of California Irvine Campus, Gillespie Neuroscience Research Facility, 1st floor conference room
Who: LBD and FTD caregivers
Contact: Shirley Sirivong, 949.824.8135 or Jean Moonilal, 949.757.3758 - Northern California/East Bay LBD and other Dementias Support Group
When: Contact Karen Jenkins for details.
Where: Livermore, CA. Contact Karen Jenkins for details.
Contact: Karen Jenkins, 925.325.0544 - Palm Desert Area Alzheimer’s Family Support Group*
When: Every Thursday, 9:00 - 11:00 a.m.
Where: Eisenhower Medical Center Five Star Club, 42201 Beacon Hill, Suite A, Palm Desert, California, 92211.
Who: Family members who have a loved one with Alzheimer’s Disease, Lewy body dementia, or any other dementia. Note: The meetings are drop-in and caregivers are welcome to bring their loved one who has dementia with them to join the adult daycare, free of charge, while the caregivers attend the support group meeting.
Contact: Stacy Smith, 760.836.0232. - Sacramento Pocket Area LBD Support Group
When: Fourth Wednesday of each month, 2:30 p.m. – 4:30 p.m.
Where: Primrose Specialized Senior Living, 7707 Rush River Drive, Sacramento, CA 95831.
Who: Caregivers, and loved ones of those diagnosed with Lewy Body Dementia. Note: respite care available.
Contact: Kim Winters BSG., M.Ed., 916.392.3510 - San Francisco Bay Area - Atypical Parkinsonism Caregiver Support Group
When: Approximately every six weeks on a Sunday, 5:00 - 7:00 p.m. (call for date information)
Where: Restaurant in San Mateo (off highways 101 and 92)
Who: Caregivers of those with Atypical Parkinsonism disorders (LBD, PSP, MSA, CBGD, etc)
Contact: Robin Riddle, 650.233.9277.
Delaware
- Lewes, Delaware Area - Atypical Parkinsonism Caregiver Support Group*
When: Second Saturday of each month, 4:00 – 6:00 p.m.
Where: Lewes Presbyterian Church, 133 Kings Highway, Lewes, Delaware, 19958
Who: Families, friends, and those with Atypical Parkinsonism disorders (LBD, PSP, MSA, CBGD, etc.).
Contact: Cathy Hon, 302.645.8540 from 8:00 am - 4:00 pm weekdays or leave a message at 302.424.1592 and she will return your call after 5:00 pm.
District of Columbia
- District of Columbia Metro Area - Atypical Parkinsonism Caregiver Support Group*
When: Spring, summer and fall; no winter meetings.
Where: Meets in group member's homes, libraries and parks.
Who: Caregivers of those with Atypical Parkinsonism disorders (LBD, PSP, MSA, CBGD, etc.).
Contact: Bill Werre or Laura Dunn for next meeting date, time and location.
Florida
-
Highlands County Area Weekly Caregiver Support Group
When: Every Thursday, from 1:00 p.m. - 2:00 p.m.
Where: Crown Pointe Assisted Living Facility, Activity Room, 5005 Sun 'N Lakes Boulevard, Sebring, FL. 33872.
Who: Family members of loved ones with progressive dementia.
Contact: Lyn & Bill Roche, 863.402.0464 -
North Broward Lewy Body Dementia Support Group
When: Call for meeting day and time
Where: North Broward Memory Disorder Clinic, 201 East Sample Road, Deerfield Beach, FL, 33064
Who: LBD caregivers and family members.
Contact: John Cavoto, 954.786.7337
Note: This group was formed in October 2000 by the Roches, who were caregivers for three family members. Every week, new and seasoned Christian and Jewish caregivers, with loved ones who have a variety of dementias, come together around a big table laden with warm, fresh-baked cookies. Each session begins and ends with a short non-denominational prayer. The Roches are accredited facilitators by both the Alzheimer's Association and the Lewy Body Dementia Association. In addition to authoring caregiving books, they currently write a newspaper column offering practical caregiving tips.
- NW Florida/SE Alabama LBD Caregivers Support Group
When: The second Tuesday of each month, from 12:00 p.m. - 1:30 p.m. Note: meetings temporarily on hold. Call or e-mail for date of the next meeting.
Where: Treasures Galore, 1700 Fairfield Drive South, Pensacola, FL 32507.
Directions: From Navy Blvd going towards Naval Air Station, turn right onto Gulf Beach Hwy. At the first traffic light is Fairfield Drive South, turn right. (*) 1700 is the 4th lot on right. Park on Graupera, which is the first road on the right.
From the Blue Angel Walmart, turn left onto Gulf Beach Hwy. At the first traffic light is Fairfield Drive South, turn left. Continue following the directions above, beginning with the (*).
From Fairfield Drive, cross over 98. About 1/2-1 mile down Fairfield on the left side, look for the Treasures Galore sign on the side of house at the corner of Graupera and Fairfield. Continue following the directions above, beginning with the (*).
Notes:- Loved ones are welcome, but please call ahead so we can be sure to have a caregiver there.
- There is not a wheelchair ramp into the shop at this time, but there are only two steps (one to the deck and one to the house).
- There are cats at this location.
Contact: Sharon Murray, 850.456.4645 Treasures Galore or 850.232.7389 mobile.
Georgia
- Three groups/classes sponsored by the Emory Alzheimer’s Disease Research Center:
- Atlanta Early Memory Loss Group/Class*
When: Fridays for 8 weeks, from 10:30 a.m. - 12:00 p.m. Held twice a year in September-October and again in February-March.
Where: Emory Alzheimer’s Disease Research Center, 1841 Clifton Rd., Atlanta, GA 30329.
Who: Open to people with mild cognitive impairment, early Alzheimer’s disease, early LBD and early frontotemporal dementia. Couples are invited to participate where one person has been diagnosed with mild memory and cognitive changes. The group is divided so that the member of the couple who is experiencing memory or cognitive changes meets in one group and their spouse/care partner meets in another group. Single individuals experiencing early memory loss are also invited to participate in this group. They may come alone but are encouraged to bring a friend and/or family member to participate in the care partners group. Topics include: common changes in people faced with cognitive changes, role changes, memory aides, planning for the future and stress reduction.
Note: Participation requires an interview prior to registration.
Contact: Susan Peterson-Hazan, MSW, LCSW 404.728.6273.
- Caregiver Challenges Class: Everything A Caregiver Needs to Know about the Middle Stage of Dementia*
When: Fridays for 6 weeks, from 10:30 a.m. - 12:00 p.m. Held twice a year in November-December and again in April-May.
Where: Emory Alzheimer’s Disease Research Center, 1841 Clifton Rd., Atlanta, GA 30329.
Who: Class is designed to prepare caregivers for the middle stage of Alzheimer’s disease, LBD, frontotemporal dementia and other neurodegenerative diseases. These progressive neurodegenerative diseases require families to plan for the future. Proactive planning can help ensure a high quality of life for the person with the illness as well as their family. Topics include: middle stage disease symptoms, behavior changes and strategies to cope with the changes, treatment options, legal planning issues, and resources to meet evolving needs.
Note: Participation requires registration.
Contact: Susan Peterson-Hazan, MSW, LCSW 404.728.6273.
- Late Stage Dementia Class: Things A Caregiver Needs to Know about Late Stage Alzheimer’s Disease, LBD and Frontotemporal Dementia*
When: Fridays for 4 weeks, from 10:30 a.m. - 12:00 p.m. Held twice a year in January and again in May-June.
Where: Emory Alzheimer’s Disease Research Center, 1841 Clifton Rd., Atlanta, GA 30329.
Who: Class is designed to prepare caregivers for the late and terminal stage of Alzheimer’s disease, LBD, frontotemporal dementia and other neurodegenerative diseases. Topics to be covered include late stage physical symptoms of neurodegenerative diseases, ethical dilemma’s that may occur and services available during the late stage, such as Hospice.
Note: Participation requires registration.
Contact: Susan Peterson-Hazan, MSW, LCSW 404.728.6273.
Illinois
- Northern Chicago/Highland Park Area Support Group
When: Contact Hynda Gamze for details.
Where: Contact Hynda Gamze for details.
Contact: Hynda Gamze 847.432.6216. Be sure to provide your e-mail address and phone number.
Indiana
- Brown County Caregiver Support Group
When: First and third Tuesday of each month, 1:30 p.m. – 3:00 p.m.
Where: Brown County Public Library – Lower Level meeting room, 205 Locust Lane, Nashville, IN 47448.
Who: Caregivers, family members, friends, support persons and health care professionals caring for persons with Lewy Body Dementia, Alzheimer’s Disease, and other types of degenerative dementias.
Contact: Donna Partridge, 812.988.9390.
Kansas
- Topeka-Northeast Kansas Dementia Support Group
When & where: The next meeting is being scheduled, contact June Christensen for details.
Contact: June Christensen, 785.273.7290.
Maine
- Portland Area Atypical-Parkinson’s Support Group*
When: Saturday May 31, 2008, 1:00 p.m. – 3:00 p.m.
Where: Port City Neurology, 7 Portland Farms Road, Suite 2, Scarborough, ME 04074.
Who: People and families dealing with LBD, PSP, CBD, MSA and other similar neurological disease.
Contact: Janet Edmunson, 207.799.4963 or Barby Johnson, 207.633.0881.
Maryland
- Baltimore County LBD Caregiver Support Group
When: Contact Kathleen Hadaway for details.
Where: Contact Kathleen Hadaway for details.
Who: Caregivers and family members of those diagnosed with LBD.
Contact: Kathleen Hadaway, 443.802.0734.
Massachusetts
- Greater Boston Area LBD Caregiver Support Group
- When: Third Wednesday of each month, 6:30 - 8:00 p.m. (Please call to confirm the date and time.)
Where: Grande Room at Sherrill House, 135 South Huntington Avenue, Jamaica Plain, MA 02130. (Get directions.)
Contact: Victoria Ruff 617.710.0136 - Note: Other Massachusetts support groups may soon form, in areas such as the South Shore, North Shore, and the western part of the state, should there be additional interest. However, for now be part of the Massachusetts online e-mail group by e-mailing your contact information to Victoria Ruff at octoryrose@yahoo.com so that she can advise you when a group forms in your area and you can connect online with others in your immediate area.
Minnesota
- Minnesota Caregiver Support Group
When: Third Monday of each month, usually at 6:30 p.m.
Where: Lakeview Commons of Maplewood, 1200 Lakewood Dr. N., Maplewood, MN 55119. (Please call to confirm the time and place.)
Who: Group is for families facing a diagnosis of LBD and healthcare professionals working with persons with LBD who want information and support.
Contact: Kathy Siegling at Lakeview Commons 651.770.1111 ext. 150 or Elaine Carlson for specifics of the upcoming meeting and to be placed on the group's mailing list.
- Southwest Metro Minneapolis Caregiver Support Group
When: Second Monday of each month, 12:30 p.m. – 2:00 p.m.
Where: Gianna Homes, 4605 Fairhills Road East, Minnetonka, MN 55345. Please park in the lower parking lot behind the residence. (Call the contact number below to confirm the time and place.) Click here or contact Anne Marie Hansen for directions.
Who: For families facing a diagnosis of LBD and healthcare professionals working with persons with LBD who want information and support.
Contact: Anne Marie Hansen 952.988.0953 for meeting specifics and to be placed on the group's mailing list.
Missouri
- St. Louis Early Onset Dementia Support Group *
When & where: Contact Charlie Schneider for details.
Who: Anyone with early onset dementia, including LBD, Alzheimer’s Disease, and other dementias.
Contact: Charlie Schneider, 314.422.0238.
New York
- New York Metro Area Support Group
When: Second Friday of each month, 12:30 – 2:00 p.m.
Where: Manhattan; call for location.
Who: LBD caregivers.
Contact: Norma Loeb, 212.556.1278.
North Carolina
- Wilmington Area LBD Support Group
When: Third Wednesday of each month, 2:00 p.m. (Please call to confirm the date and time.)
Where: Wilmington Senior Center, 2222 South College Road, Wilmington, NC 28483.
Contact: Dick Freund 910.686.2583
South Carolina
- Golden Corner Lewy Body Dementia Support Group
When: Last Monday of each month, 7:00 p.m. - 8:30 p.m. beginning April 28, 2008.
Where: Benton Village Retirement Community, 515 Benton Street, Seneca, SC 29672.
Who: Caregivers and health care professionals.
Contact: Debbie Malone 864.888.4114
Texas
- Alamo City/SW Region Dementia Support Group
When: Contact Elvia Velasquez for details.
Where: Contact Elvia Velasquez for details.
Contact: Elvia Velasquez 210.661.1418. Be sure to provide your e-mail address and phone number.
- Houston Area Support Group*
When: Third Saturday of each month (except for July (no meeting) and December, when the meeting is on the second Saturday.) 1:00 p.m.
Where: Learning Center B of Professional Building II on the campus of the Memorial Hermann Southwest Hospital located at 7737 Beechnut. (Located at the Beechnut/Gessner Exit from Highway 59.)
Who: For caregivers and persons with progressive supranuclear palsy (PSP), Lewy body dementia, corticobasal ganglionic degeneration, and multiple system atrophy.
Contact: Karen M. Kennemer 281.358.2282
Toronto, Ontario, Canada
- Alzheimer Society of Toronto Lewy Body Family Support Group*
When: Second Wednesday of each month 4:30 - 6:30 p.m. - Where: Alzheimer Society of Toronto, 2323 Yonge Street, Suite 500, Toronto.
Who: Family members of those diagnosed with Lewy Body Dementia.
Contact: Jennifer Kivell, 416.322.6560, ext. 231