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Starting and Running A Caregiver Support Group

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There are millions of caregivers in the United States and they all have common needs: recognition, counseling, support, information, problem sharing and, in many cases, peer socializing.

One of the proven ways that many of these needs can be met is by the formation of a local Caregiver Support Group.  Caregivers are one of America’s most valuable assets, but often their needs are lost in the care recipients’ problems.  Therefore, having a place where caregivers can be themselves, share experiences and insights and have the positive input of their peers is critical.

What is a Support Group and how do you Start One?

A caregiver support group is a regularly scheduled, informal gathering of people whose lives are directly or indirectly affected by the caregiving needs of another and who benefit from peer acceptance and recognition for their common concerns and are grateful for the wisdom, insight and humor of their fellow caregivers.

Who Runs a Support Group?

Informal support groups generally are created by one or more individuals dealing with a loved one who have an illness in common such as Parkinson’s disease, or age (grandma) or category (kids with special needs) that decide they need to reach out and share to help others and themselves. It doesn’t take special training, but it does take effort, dedication and ingenuity.

Coordinator Responsibilities

The number one priority usually is “Where are we going to meet?”  A good first choice is a local hospital: you can probably reserve a classroom or small auditorium for your meetings.  The education department, administration secretary, or human resources usually know whom to contact. Some groups meet at a church, synagogue, community center, YMCA, library or even a physician’s conference room. The meeting place must be easily accessible and physically as well as psychologically comfortable.  Also check with local nursing homes, adult day centers and assisted living facilities as they directly benefit from caregivers being exposed to their facilities. Also, if a loved one must accompany the caregiver, there is a place for them to go. All should be free of charge. 

Helpful Hints When Looking for Space

When Should We Meet?

You probably will have to poll the interested parties regarding the best time to meet - day or evening, weekday or weekend, as well as how often.  The most successful groups are well planned and plan well. It helps to have a regular pattern: the first Monday of every month or every Tuesday.  Depending on the time of day you have chosen to meet, you may want to consider if your group will be together during a mealtime. For example, a mid-day gathering allows the possibility of a brown bag lunch. Another possibility could be to have each member contribute to a hospitality committee if your group wants refreshments.

What If Your Loved One Cannot be Left Alone?

Depending on the disease, there are many different options to think about. If the patient needs day care, some facilities may allow your loved one to attend their facility one-day per month or week; the same as with a respite program. Having a friend, neighbor or relative stay with your loved one so the caregiver can attend is another possibility. REMEMBER this is for the caregiver and you must have some time alone.

What Makes a Good Group Leader?

Many times, the co-coordinator is also the group leader. However, as a group grows, others may help facilitate and lead, while the coordinator takes care of all the logistics. The leader must be active and maintain an interest in the group. The leader needs to stay current regarding new information and advances in the areas of interest to the group. The leader must be dynamic and motivated.  Active listening while guiding the group is important to the success of the group. It is also important to end the group meeting on a positive note. Periodic evaluation of the program will ensure its viability.

How Do You Get the Word Out?

Getting the word out is mostly about networking.  Your church or synagogue may print an announcement in their newsletter.  Distributing flyers around the area and placing announcements in the community calendars of local newspapers or Web sites can be helpful. Remember to put in a phone number, email address or Web site and when you can be reached.

Depending on the disease or illness, you should talk to local physicians that treat patients with that disease.  He or she will refer caregivers of patients living with that illness to you.  Maybe the doctor will even post a flyer in the office.

Remember, whoever the contact person is, he or she should always remember that the first contact is the most IMPORTANT!  This person may be the deciding factor when a caregiver is considering attending the first meeting.

If you are choosing a local medical center as your site, post the meeting in their lobby, and notify their employee newsletter.  Often they will make an announcement welcoming your support group. Many times, public or community relations departments will assist you so it never hurts to ask. Also, try to speak at some of the nurses’ meetings and let them know about the group. Nurses would be delighted to be able to point a caregiver in the right direction for support. Don’t forget, local TV and radio stations also accept Public Service Announcements.

Now you have a list of names and telephone numbers and where and when you think you would like to meet.

First Meeting

The first gathering may be a small group of five or six people. Still, a great deal can be accomplished. Remember, sometimes it takes quite a while to get the group up and running. Be patient, and remember if you help just one person, you have done an excellent job.

You might think that the challenge is getting people to come to your first meeting, but it may not be difficult at all.  The real challenge is getting them to keep coming back!

Suggestions for Meetings “Icebreakers”

Keep it Going

The leaders and coordinator must take ownership of the process and remember to rotate some responsibilities. In the beginning, the group will focus on the disease information process, prescription comparison and common symptoms and afflictions. It will take time to move to a wide variety of common topics. Eventually, all of the clinical things get known and broader and more common problems get discussed. It is not unusual for a group to go for years and to have upwards of 100 members. They come and go as their needs and schedules require and as their personal caregiving circumstances dictate.

It’s also a good idea to keep a log of the meeting date, time and discussion topics of that meeting. It helps resolve issues, arguments and scheduling later on.

Informal Research

In time, the group may wish to look into assessing the effectiveness of the information and support it provides. When new caregivers first begin to attend the meetings, you can ask caregivers to fill out a reliable depression questionnaire; when done again in six and 12 months, you could then prove the positive outcomes of the support group. Periodically surveying all caregivers for suggestions, additions and deletions to the program provides an anonymous forum to allow for constructive change (or at least its discussion) within the group.

Conclusion

Caregiver support groups are an invaluable tool to helping others and oneself deal with the consequences of being a family caregiver. Taking the initiative to begin one and follow through is a major commitment, but with unlimited rewards. Once you are up and going, you will really appreciate and love it. It is one of the best things I ever did in my life, and I am so grateful that I could really help and give back to the community.

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