Q: My wife was diagnosed with frontal lobe dementia last year. We have been managing fairly well, but we are not able to have conversations like we used to and I am having to do everything around the house now. It gets lonely sometimes and my daughter suggested I go to a support group. I am not sure how I feel about talking to a room full of strangers. Do you think it would help and how would I find one?
A: You bring up a valid point. Who doesn’t love sharing their problems with a room full of strangers? As a support group facilitator for over 20 years now, I can honestly say that while support groups may not be the right fit for everyone, they can be very beneficial. Being a caregiver or dealing with a new diagnosis, can be very stressful and isolating. Sometimes listening to others share their stories and struggles can help you normalize your own. Support groups come in many shapes and sizes. Some are geared to a specific diagnosis (cancer, dementia, Parkinson’s), while others are more general (grief, caregiver). Some groups meet monthly and others meet weekly. Typically, a trained facilitator will serve as the point person and then other speakers or informational programs may be brought in to help group members connect to resources. One of the cornerstones of any support group is that information shared by participants is confidential. The facilitator should reinforce this to help participants feel at ease when sharing personal information.
It is very common to be apprehensive about showing up for the first time. It might help if you call and talk to the facilitator first and share a little about your situation. They can share some of the group dynamics and help determine if the group seems to be a good fit. Some groups also have participants who have attended routinely and are happy to speak to you individually, prior to coming to the group setting. Each group tends to take on its own personality, so if there is more than one in your area, you might visit a couple to see if one makes you feel more comfortable. A typical session might include introductions, guided discussion, and open sharing of current challenges or successes. You are not required to share and maybe more comfortable just listening and observing for a couple of sessions. This is perfectly acceptable. You should also ask how long the meeting typically lasts; you can arrange someone to be with your wife at home if necessary. Some groups include sessions for the person diagnosed; you can ask this ahead of time as well.
There are many potential benefits people experience when they join a group. Everyone’s journey is different, but there tend to be some commonalities. Some will be at the beginning of the journey while others are further along. It can help to learn how other people have handled similar challenges. Some of the most creative ideas for coping emerge from support groups. It may be a new experience for you and your wife, but something others have already dealt with. There is a genuine understanding and empathy that occurs in a beautiful way. It provides a safe outlet to share how things have changed for you and connect with others who may be feeling the same way. There are tears in support groups but also a lot of laughter. I like to compare it to rowing a boat by yourself, to suddenly picking up a crew who speak the same language. Everyone is just doing their best to keep their head above water. Together you all manage to stay afloat. Connectivity is powerful; the support group can become an instrumental part of the safety net you are going to need in place.
There are a few resources you can utilize to find local support groups. A local hospital, department of aging, social services, care facility or private care management practice are likely to have information.
Churches may also offer or host groups. National or state organizations for the specific diagnosis also provide information on local groups and often help train facilitators. Some groups are listed in the newspaper or community calendars.
Do I think it would help? Absolutely. I suggest you go at least three times and then you can decide if you think it is the right fit and timing for you. It will get you out of the house, and at a minimum, you will meet a few new people and learn about potential resources to help you and your wife as you continue to navigate this journey.