How to Start Your Own

Caregiver Group

by Sheryl Karas M.A.


I recently spent an enlightening day with a group of caregivers who were angry over the lack of attention caregivers receive in our healthcare system and intent on changing how our society handles the issue of patient care and family support. Anyone who works in the field of health care and senior services is painfully aware of the growing need and the lack of resources. The senior population is the fastest growing segment of our society and the number of people with chronic or degenerative health conditions has already pushed our health care delivery services to the limit. We need better working conditions and higher pay for in-home and nursing home care workers so the turn-over in that field will stop being so phenomenally high. We need more local daycare programs like Cindy's Celebrations and Elderday and more continuing-care communities (we don't have any in Santa Cruz) so people can retire to a home they can stay in the rest of their lives regardless of their need for assistance. Meanwhile, we can't forget the 52 million informal and family caregivers who are already attempting to care for an ill or disabled adult in the system we have now. While we're attempting to change the world, we must cope with current conditions and keep our heads above water as best we can.


That's where community support groups come in. We can't do this work by ourselves. When we stay in our own little worlds — struggling alone, just doing what we have to do to get by — our patient's degenerating condition slowly eats up more and more time and restricts our world smaller day by day. We need outside support and opportunities to step outside our boxes and learn from the experience of other people. If nothing else, it helps to know we are not alone. This issue of the Caregiver News is focussed on how to create your own caregiver group. You will also find online opportunities and contact numbers for finding groups that already exist.


The Value of Creating Your Own Caregiver Group


Our area probably has more caregiver support groups than most communities its size in the nation. Still, what we have does not even begin to meet the potential demand. (Therapists, personal coaches, take note!!) In the past three months I have received numerous requests for groups: for people taking care of parents without dementia; general caregiving groups with no specific disease orientation; groups for women exploring a spiritual approach to caregiving; groups for men taking care of a spouse with MS; anticipatory grief groups for caregivers who know their patient is going to die; and education-oriented groups for those wanting to learn new skills. We would like to be able to fill all these needs but we don't have enough time, staff or volunteers to do it.


I have 18 years of experience leading peer counseling groups and teaching peer counseling classes — I even wrote a book on the subject (Changing the World One Relationship at a Time: Focused Listening for Mutual Support & Empowerment). I have also led coaching groups which involve setting goals and helping group members attain them as well as groups through the Alzheimer's Association which tend to be focussed on information sharing and informal community building. There is no one way a group needs to be run and I can teach you how.


Wait! Don't skip through this email so fast!


I know what you're thinking: "Yeah, right! Like I have time to do that!" or "I can't run a group — I'm not a therapist!"


Well, I'm here to say it's no big deal. If you want a group of people to share a meal with, talk about your life with, brainstorm various caregiving situations with, or even to take turns sharing the care of your patients, it's worth the relatively short time it takes to make it happen. (I've had people waiting for groups they wanted to be in for years.) Many people think you need professional skills to start a support group. Well, if you want to do group therapy, you can always combine resources and hire a therapist who does group facilitation (ask friends for referrals). But for less formal support all you need is a willingness to share leadership and abide by some simple guidelines. Running a group becomes child's play when everyone knows how to make the group go well.


Why You Might Want to Start an Informal Support Group


    * To share information and experiences with other people going through similar things

    * To feel less alone or isolated

    * To gain a perspective outside of your own in order to make better decisions

    * To learn new skills

    * To gain the courage to do something you haven't been able to do alone

    * To increase self-esteem and awareness

    * To laugh

    * and have fun on a regular basis


Things You Can Do in a Group Besides or In Addition to Talking about Problems


    * Eat! Potluck or take-out dinner or desserts

    * Tell life stories

    * Set goals for your lives

    * Cheer each other on

    * Invite guest speakers

    * Watch videos

    * Research topics and share information

    * Take turns helping each other with projects

    * Pool resources for respite: hire one respite worker for two or more patients instead

    * of spending so much for individual care

    * Go on respite day trips together

    * Write letters to Congress about caregiver support

    * Develop ways to help each other via

    * telephone or internet when you can't meet in person


How to Get Started


The first thing you need to do is find the people and the place for your first meeting. You need between 3 and 6 other people for a healthy group but for the first meeting 1 or 2 will do. After the first meeting you can split up the work of finding more group members if you so desire. Don't accept more than 6 unless you simply plan to share information or have guest speakers. It takes too much time and the attention from other group members tends to wane when a group gets very large.


To find people: The easiest way is to ask your friends to tell their friends but if you don't know other caregivers here are some suggestions. If it's a caregiver group, send me an email and I'll put an announcement in this newsletter with an email address where you can be reached. Make announcements at your church or at any class or community group you attend — you never know when another caregiver might be sitting right next to you. Put up a flyer at your gym or health club. If you want people all dealing with the same disease or chronic illness, contact agencies or doctors who specialize in that illness (ask to leave a flyer in the waiting room or attached to the counter). I also recommend sending an announcement to the local newspapers and public radio stations. You can usually get a calendar listing for free if you plan ahead. If you go public like this, don't give out your home address. Meet in a public place or plan on screening people over the phone to make sure it's a good fit.


Where to do it: A living room or kitchen table big enough for everyone to sit around with enough privacy so people can speak freely is ideal. Restaurants or coffeeshops can also work well. The idea is to make it as easy as possible. So, if you intend to host it at your house, have other group members take turns providing refreshments or order up take-out food and split the cost.


Structuring the Meeting


Choose a regular time, place and length of time. I recommend allowing about 15 minutes of individual time per person plus time for socializing, announcements and the business of running the meeting (about 1 1/2 hours for 3-5 people.) Meet at least every other week to establish relationships, continuity and safety. Once a month meetings tend to work only when group members already know each other well.


Then decide what you want to do together. The easiest thing is to split the bulk of the time and give each group member a chance to talk about whatever is going on for them. It's best to refrain from giving advice ("You should do such and such") but it can be very helpful for group members to share what worked for them in similar situations or to pass on resources they have found. You could also suggest a topic and have everyone speak to that subject in a second go-around if there is time.


The level of facilitation needed for such a group is minimal if you keep to a set structure. The facilitator calls the meeting to order, keeps track of time, makes sure the business of the meeting happens (short announcements, setting time, place and facilitator for next meeting, etc.), and makes sure everybody has an equal chance to speak and be heard. The role can be rotated among group members but it is essential that someone be in charge of this function each time you meet. Without some sort of leadership, groups can get chaotically off track and people leave feeling like their time has been wasted. For busy caregivers who work extra hard to find a way to be there this is doubly tragic so make this your highest priority.


Some groups use a timer for each person's turn or have a group rule that nobody speaks twice before everyone has had a chance to speak once. Other groups pass an object (a stone, a rattle, a stuffed animal) around the circle to remind group members that only the person holding the object should be the center of attention and all other people should be silent and attentive. Other groups enjoy a more free-flowing exchange but constantly monitor the interaction, encouraging quieter members to speak. The most important thing is to ensure that people's time is valued (that you do what you came together to do) and that everybody receives the benefit of the group's full undivided attention equally over time.

Important Guidelines


All group members should agree to keep everything they hear in the group confidential. It is important that people not have to worry about their private problems being used as a source of gossip.


People should make an effort to set personal judgments and biases aside so each person feels loved, supported and capable of making their own decisions without fear of group disapproval. Remind people at the start of each session that we all have our own life histories, intricate family dynamics and special problems to deal with and what works for one person may not work for someone else.


Don't allow personal attacks and confrontations in the name of "therapy". This is not an encounter group. It's a friendship circle.


Focus on solutions more than problems. Don't let the group degenerate into a mutual gripe session that simply reinforces everyone's hopelessness and despair. Maintain an atmosphere of mutual respect and encouragement. If someone needs to vent emotionally, encourage it but follow that up with questions that will support the person's ability to make improvements in their situation. (For example, "If this situation you are so upset about were to happen again, what might you do differently? What has worked in the past? What have other people done in similar situations? How could you prevent this situation from happening again? Where can we get more information?")


People often fear that without a professional present to answer questions a support group is of no benefit. Unfortunately, having a professional present often keeps people from coming up with their own solutions because people assume that the purpose of having an "expert" there is to provide the answers. Keep in mind that there is no professional technique more important than listening. Listening to another person with an open heart and full attention is love. And when we feel loved we often get the sense that maybe we're ok after all. Our minds quiet down and then, lo and behold, we come up with the answers we need all by ourselves. People rarely allow enough time for this to happen but in a peer-led group this is actually fairly essential. Don't interrupt others when they speak. Let people collect their thoughts before speaking. Don't jump in with ideas and suggestions right away. Ask questions instead (see the previous paragraph). If you take moments of silence in your group to help people breathe and relax, your own best thinking and internal guidance will surface.

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A new version of this article can be found in Sheryl’s latest book The Spiritual Journey of Family Caregiving.

© Copyright 2007 Sheryl Karas & Paul Hood

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Caregiving Articles

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