Alzheimer Family Program

Caregiver Support Groups

Caregivers report that participating in a support group is the single most helpful thing for them.

They find support in being with others who truly understand their situation, and this makes them feel less alone.

They learn actual tips and strategies that have worked for other caregivers. They hear what they need to know to prepare for the future.

They also learn why it is important to take care of themselves and ways to do this.

There are several support groups that are active in the Birmingham and surrounding areas.

You can receive Caregiver Support Groups schedules, meeting locations and contact information by calling (205) 934-2178. You can review detailed information about Caregiver Support Groups by clicking on the topic listed below.

WHAT ARE SUPPORT GROUPS?

Support groups are available for people with a wide range of concerns. They have various formats and vary in size. There are some characteristics they share in common, however, and this article will speak in general terms about “most” support groups. For caregivers of people with dementia or Alzheimer’s disease...

A support group is made up of a designated leader and people who share a common concern or challenge. Groups for those caring for loved ones who have dementia are usually led by a person whose training is in the helping professions, such as a counselor, social worker or doctor. Sometimes a leader may not have the professional training but may have rich experience in dealing with caregiving issues and also have strong skills in communication and group dynamics. Members of the group are those who seek support in their roles as caregivers and commit to attending the meetings when they can. Meetings are usually held in public places such as a church, library, or community center, where parking is available. Telephone and internet support groups are also becoming possible with caregivers who have a difficult time leaving their homes.

Caregiver support groups meet on a regular basis, usually once or twice a month for one to two hours. Although there are no “rules” for meetings, there are some commonly agreed upon guidelines. One guideline common to all is that of confidentiality. Participants need to feel confident that what they talk about in the meeting will not be repeated or discussed with others. Sharing stories and feelings that affect us deeply is hard to do, and the knowledge that one’s story will be held in confidence makes it safer to take the risk to share. Another shared guideline is that every person will have an opportunity to talk if they want to. Nobody will dominate the group’s time.

The leader and the members share the responsibility of watching and listening to assure that nobody gets shut out. Nobody talks if they do not want to, and it is not unusual for new members to just listen until they begin to feel comfortable and trust the group.

Some groups spend the whole time talking and sharing their concerns as caregivers. Other groups combine this sharing time with getting information on a particular topic – like legal issues, finding sitters, or ideas for the holidays. Information on the topic may be provided by the leader, and then members add their own experiences and insights.

HOW DO SUPPORT GROUPS HELP CAREGIVERS???

Many caregivers have told us that attending a support group is the most helpful single thing they do for themselves as caregivers. They consider the group their “lifeline”. There are several factors that make supports groups helpful.

Support Groups decrease feelings of isolation.

It is not unusual for caregivers to feel very alone. Often, the disease means they and their loved one can no longer take part in activities or gatherings which were very important to them in the past. Examples of such lost opportunities might be church functions and social or civic clubs. We human beings are social animals, and most of us need to be around other people. The physical isolation that comes with caregiving can be a real loss. On top of that, there is the emotional isolation of the role. Many caring for dementia patients report that their friends and family stop coming over or calling. There may be many reasons for this, not the least of which is that others feel uncomfortable when they don’t know what to expect or how to interact with someone who has memory loss and confusion. If this is the case for you, you may be able to help others learn how to help, and AFP has information you can use to inform others. Attending a support group allows caregivers to be with other people – people who understand their situation and can identify with their feelings.

Support groups increase your understanding of the disease process and help you learn new skills for care.

Many support groups dedicate a portion of the meeting to learning skills for handling issues related to dementia. Learning in this way can be very helpful, but the biggest way people learn in support groups is from each other. You may have found ways to handle problems that others have not found, and they may have new ideas for you to try. The burden of caring for a loved one with dementia can be so great that it becomes hard to think in creative ways. Having others share their ideas allows a caregiver to become open again to new solutions to try.

Support Groups can help you prepare for the future while you live in the present.

Persons with dementia and memory loss live in the present. They are losing memories of the past and they cannot envision tomorrow, so a caregiver needs to concentrate on interacting with them in the present moment. But… it is very important for caregivers to pay attention to future needs as well. Legal matters need to be addressed early in the process. You should examine any alternative living and care possibilities. You need to line up help for the present and the future care of your loved one. In a support group, there are people who are at every stage of the caregiving journey. Caregivers can learn from the experience of others and be better prepared for the future.

Support Groups can give you information and support in caring for yourself.

If you do not take care of yourself, you will not be able to continue to give the best possible care to you loved one. In support groups, you can learn ideas for how to get a break, where to find help, how to relieve stress, how to eat well, and how to manage your own energy level. Perhaps most important of all, others can help you deal with the feelings of guilt and inadequacy many caregivers have when they do something for themselves. You are traveling on an uncharted road, but in a support group, you can share the journey with others who understand and support you.

In her powerful book about healing, Dr. Rachel Naomi Remen tells of a support group for cancer survivors. I share this quote from her book, My Grandfather’s Blessings.

"Over time, I have seen that when people can show their pain and suffering to others who genuinely understand, much of what has stood between them and their wholeness disappears....Eight people who barely know each other's names talk intimately about their losses, surprised to be able to say things they have not been able to say before. When someone speaks, everyone present simply listens generously and no one asks for explanations. No one needs to. So, in the end, people find they are able to belong just as they are. A place that can accept your suffering without dismissing you is a safe place. A place where you can become whole again. I remember talking about these early sessions to someone who commented that it sounded like we were encouraging victimization and self-pity. But it simply doesn't happen that way. In being able to talk this openly, people often are able to see for the first time that which their suffering has covered over: the courage, the strength, the faith. The will to live and its power...I have watched wounded people strengthen the life in each other over and over again. At the beginning it may seem like a group of victims; but, as it turns out, it is usually a room full of warriors."

*from My Grandfather’s Blessings by Rachel Naomi Remen, M.D. Published by The Berkley Publishing Group in 2000.

Article written by Betty Roberts for UAB Alzheimer’s Family Program

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