Starting and Running A Caregiver Support Group

By Suzette Levy

 

 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 coordinator must be dedicated to the cause of helping other people.

  • The coordinator needs to be supportive, realistic, reassuring and empathetic.

  • Must be able to assess the needs of the individuals and the group as a whole.

  • Plan programs.

  • Recruit members.

  • Set up meetings.

  • Lead group discussions.

  • Distribute information.

  • Publicize the group.

Where Should We Meet?

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

These are some ideas to consider:

  • Is there a cost?

  • Are tables and chairs available?

  • Can I arrange them in a circle?

  • How many will the room hold?

  • Is it handicapped accessible?

  • Is the room adequately air-conditioned and/or heated?

  • Is a restroom location near the meeting room?

  • Is there a telephone available near the meeting room?

  • How far is the entrance from the meeting room?

  • Name and number of person in charge of this area?

  • Is a kitchen available?

  • Would the facility assist in advertising that your group is meeting there?

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.

  • Leader must be dedicated to the cause of helping and caring.

  • Assess the needs of the individuals and the group as a whole.

  • Plan programs.

  • Recruit members.

  • Set up meetings.

  • Distribute information.

  • Finding other speakers such as a physician or other professional is always a good idea.

  • Publicize the support group.

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!

  • Set up two tables, for registration and refreshments. Perhaps the co-leader or a volunteer could be at the refreshment table and help people get accustomed to the new environment.

  • The registration table should have a dated sign-in sheet with a space for name, address, phone number and e-mail address.

  • Arrange the seating in a circle or semi-circle.  This facilitates conversation and a friendly atmosphere. Remember, your goal is to provide an open environment for the exchange of thoughts, feelings and information that doesn’t go beyond the group setting. There should be room for laughing, hugging, crying and bonding; or quietly sitting and listening. Never let any one person take over the conversation for too long; you should allow everybody to get his or her chance to speak. You may have to interrupt and say, “Maybe we should see what Mary thinks about that.”

  • If you have a speaker, be sure to allow time for a question and answer period following the speaker.

  • Restate the primary goals of the group; this will help to give the group direction.

Suggestions for Meetings “Icebreakers”

  • Lets get acquainted today.

  • Tell us the most difficult thing you had to handle this week.

  • Remember, the best way to get a good idea is to get a lot of ideas in front of the group.

  • Coping with caregiver worries.

  • Conquering caregiver fears.

  • Health strategies for active caregivers.

  • Taking care of yourself.

  • Companionship, love and caregiving.

  • Coping with the Stress.

  • Understanding this disease

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.

 

Suzette Levy is former co-founder and Director of North Broward Hospital District Neurological Institute; she presently is the Caregiver Support Group Director for the National Dysautonomia Research Foundation and a founding director and President of the American Association for Caregiver Education.

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