Is confidentiality a high priority? A statement similar to "what is said here stays here" should be made at every meeting as a reminder...and a promise. New members especially feel uncomfortable sharing information about loved ones and their difficult behaviors--and their sometimes irrational responses as well. They need to know that their stories aren't going any further.
Does everyone who wants to get a chance to share? This has a lot to do with group size and time but it also has to do with group guidelines. Is there some method by which members are limited to a fair amount of time each? Some groups delegate a timekeeper, for example. In others, a facilitator might gently remind members about the need to move on when someone takes more time. Or a member might willingly give up their turn to give a needy member more time, with the understanding that they would go first at the next meeting.
Is there a variety of care partners from all levels of care? Besides members who've been active care partners for varied periods of time, the ideal group has a surviving care partner or two, some and a few new people. As one person put it, "We need some to lead us, some to walk and laugh and cry with us and some to come along behind and learn from us." An ideal group will also have a mix of members who have loved ones at home and in a care center and a some long distance caregiver or two, who are trying help loved ones who live elsewhere. A varied group gives members wider perspectives and a chance to learn more about some of the choices they may need to make, such as how to go about choosing a care facility.
How is venting dealt with? This is a sensitive subject for support groups. It is an needed and important part of the group but it is also the one new members complain about the most. The release of held-in frustrations, followed by supportive responses from members who've felt the same way at times, can be very bonding and should be encouraged. When this interaction is followed by a discussion of workable suggestions for limiting future frustrations, the experience can be uplifting. However, when the venting is allowed to turn into a mutual gripe session or a game of one-upmanship, it can be depressing and off-putting. The facilitator or a group member can change this by moving the conversation on to solutions: "How did you deal with this situation?" Or "When that happened to me, it helped to do such and such. How about the rest of you. What has worked for you?" Being able to vent is freeing for the moment but the shared suggestions, ideas and facts are what send group members home rejuvenated and hopeful instead of more depressed.
Is the atmosphere positive and supportive? Do group members listen carefully before commenting? Is interrupting discouraged? Do you hear words of encouragement and support like "You did the best you could" or "Good for you!" or "Wow, that must have been hard!"
Is criticism and judgment discouraged? A member might respond by sharing a different solution but this needs to be done with respect and encouragement, not judgmentally. Everyone deals with their issues differently and this should be respected.
Does the group stay on track? If a conversation wanders, does the facilitator or someone else step in with a friendly comment like, "Let's move on. I think it is Connie's turn to talk." Care partners usually have limited time and it needs to be used constructively. While they might enjoy a gossip session at another time, and maybe even benefit from the freedom of talking about other subjects, this is not the place. You came here for support with a difficult job and that is what you deserve.
Does learning take place? A support group is not just a place to get emotional support, as important as that is. It is also a forum for sharing experiences, and passing on what worked and what didn't for the members. One member commented, "I always learn something when I come to a meeting." That is as it should be. Learning something to take home and try out is energizing and we all know how much a care partner needs that!
After you've done your inventory, you may think you don't want to go anymore. If the reason is something serious, like too much criticism, talk to the facilitator. If it is just a feeling of uncomfortableness, that is normal in such a new situation. In any case, make a promise to yourself that you will attend for at least two more meetings before you decide to drop the group. As you begin to benefit from the group, you are more likely to want to stay. If you still don't, consider telling the facilitator why. It may help them have a better group.
Next week: A new series starts on the 2017 Diagnosis Criteria for Dementia with Lewy Bodies
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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