The Importance of LBD-Specific Support Groups

A recent poster presented at the 2016 Alzheimer’s Association International Conference suggests that LBD caregivers experience unique benefits from attending an LBD-specific support group compared to a general dementia support group.

Christopher Zalewski of the Cleveland Clinic Lou Ruvo Center for Brain Health, in collaboration with the Lewy Body Dementia Association and Taylor Young of the Cleveland Area Chapter of the Alzheimer’s Association recently launched a support group for LBD caregivers in response to feedback from LBD patients and families.

LBD families reported difficulty relating to Alzheimer’s caregivers whose challenges often centered around memory loss, which is not always a concern for LBD caregivers. The lack of familiarity with LBD symptoms also resulted in LBD caregivers receiving misguided or ineffective advice.

A number of common LBD caregiver needs emerged from group discussion. On the movement side, families need assistance managing movement changes such as ‘freezing’ or slowed movement. Emotionally, family caregivers feel a lack of understanding and awareness from their peers regarding LBD. They also need help responding to hallucinations, delusions and fluctuations in LBD symptoms. Challenges in obtaining a correct diagnosis and avoiding medications potentially harmful in LBD were common clinical concerns. In addition, creating a safe environment at home in response to fluctuations is a consistent issue.

Quotes from LBD caregivers participating in the discussion underscore the importance of LBD-specific support groups. “This group is so necessary for early stage Lewy body dementia caregivers. I had no idea about how different the journey would be compared to Alzheimer’s.”

A general satisfaction survey of 10 members from the new support group confirms the participants find the group of significant value.  All respondents agreed or strongly agreed that they now know more about LBD resources, would recommend the group to other LBD caregivers, and found the group to be helpful overall. Nearly all (90%) respondents agreed or strongly agreed that the group helped them prepare for the future.

The Lewy Body Dementia Association offers training and resources to help both laypersons and professionals launch new groups across the country. For more information, contact at