Do I want a local face-to-face group or virtual online group? Each has their unique values and many care partners recommend that if possible you use both. A local group gets you out of the house and meeting other, like-minded people who over time may become friends. However, not all communities have local LBD oriented groups. Also, these groups usually only meet once or twice a month. You can find many LBD-oriented groups online and they are all ongoing. You can go to one any time of the day or night every day. Another advantage of virtual groups is that you can probably find a discussion about almost any subject at any given time just by doing a search.
When you find a local caregiver support group, ask questions like these:
Is this a general or a LBD-specific group? It is usually best to choose a LBD-oriented group. Members in a general caregiver support group may not be able to relate with dementia-related issues. Those in a general dementia group or an Alzheimer's group may not be able to relate with the LBD specific symptoms such as movement issues and hallucinations. Members in a PD group may, but they may be resistant to dealing with dementia issues. However, if that isn't available, choose the best fit possible and supplement it with online LBD-specific groups.
Am I eligible to attend the group? Some groups are open to any interested person and some limit their members to only certain groups such as spouses, adult children, teens. Open and closed groups each have their value. You get a broader view of the issues in the open group and usually, more attention to those issues specific to your own in the closed groups.
Where does the group meet? Many meet in care centers, but some meet in private homes, senior centers or hospitals. Some groups meet in restaurants. If that is the case, ask where the meeting area is. We've attended such groups where the meeting area was right in the middle of the main room, which lend itself to talking about confidential issues. Others where it was in a separate room or area where members felt comfortable to talk.
When does the group meet? For a care partner who is also working, an evening group is usually better but for a full time care partner, an afternoon group is. By evening, few care partners want to leave the comforts of home!
How large is the group? From six to ten people is ideal. Any smaller, there is likely to be a good cross-section of issues and suggestions. A larger group decreases the feeling of intimacy that is needed for a successful group. Besides, not all members may be able to share.
How long does the group last? An hour and a half is ideal. Any longer without a break and people tend to lose focus. A larger group may go for a couple of hours without a problem.
Are the start and ending times are clearly stated--and kept? Care partners usually have limited time that they can be away from home and will feel anxious if kept longer than the expected time.
Do you have day care available for my loved one? Some groups, especially those that meet in a care center, offer free daycare during a support group. These will allow you to bring your loved one along and they can get a taste of what being in a care facility is like. They usually provide entertainment, music, singing, story telling, etc. during this time to keep it interesting.
What is the cost for the meeting? If there is a fee, be wary! There may be a small charge for daycare, or if an association is holding the meeting, they want you to join. But the meeting itself should be free.
Next week, more about support groups.
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.
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