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Life Lines: Support groups offer information, advice, encouragement, and community. Use these tips to find the right one for you or to start your own.

Kritz, Fran

doi: 10.1097/01.NNN.0000511236.12445.d3
Departments: Living Well

Life threw 68-year-old Marilyn and Tom Oestreicher of Sycamore, IL, a curveball two years ago when Tom was diagnosed with Alzheimer's disease. Since then, Tom, the author of four novels, has stopped working. Most days he's moody and depressed. He also has trouble concentrating and following conversations, and is often confused. He is increasingly uncomfortable in social situations and relies on Marilyn more and more to make decisions. The leisurely retirement the couple planned is no longer part of their future.

Marilyn has many dark days, but one bright spot comes twice a month when she attends a support group for spouses of people with Alzheimer's disease. “I don't come home more depressed after the meetings,” she says. “I have a new group of girlfriends, people I might not have encountered otherwise. We are very candid about everything: declining health, spouses with dementia who can be violent. We talk about anything.” She appreciates that the members know exactly what she's going through.

The support group Wendy Driscoll, 73, started two years ago for people with Parkinson's disease combines exercise with conversation. She got the idea soon after she attended her first support group in Worcester, MA, 15 miles from her home in Westboro. At the meeting she met Tom Olson, also from Westboro, and the two decided to start a daytime support group in their town. At first it was just the two of them watching an online webinar. But Driscoll felt something was missing. “We have a movement disorder, but we're not moving. Let's exercise!”

Olson asked his local church if they could hold exercise classes there. When the church said yes, Driscoll and Olson sent out a press release, posted flyers at senior centers, and within a few months added new members. Driscoll, a former physical therapist, leads the group in basic stretching and strengthening exercises. The spouse of one member sets up refreshments, greets people, and keeps track of the meetings.

Over the last two years, the group, which is now up to 18 members, has tried many types of exercise. That's followed by “lots of conversation,” says Driscoll, who marvels at how well the group works. “Each of us with our own problems, frightened by what is happening to our bodies, we come together. What happens in our group is pure alchemy.”

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LIFE SAVERS

For people like the Oestreichers and Driscoll, support groups can be godsends. That's why doctors, nurses, and social workers so often recommend them. And if they don't, it's worth asking about them, says Scott Hirsch, MD, assistant professor of neurology and psychiatry at the New York University School of Medicine in New York City. Dealing with a chronic, progressive illness can be scary whether you're the patient, a family member, or a caregiver, he says. “Having sources of support can make an illness not just more bearable but less lonely. Support groups can also provide information and tips that can make things a bit easier.”

Support groups fulfill a unique need, says Ruth Drew, director of family and information services at the Alzheimer's Association in Chicago. “Humans want to be understood, and that's what you can get from a support group.”

We asked various experts, including patients, caregivers, social workers, and neurologists, for advice on how to find the right support group.

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KEEP IT POSITIVE

There's no right or wrong way to facilitate a support group, says Lindy Suarez, a social worker with the Peak Brain and Pituitary Tumor Center at Houston Methodist Hospital. But creating an environment where everyone feels safe, welcomed, and understood increases the likelihood that participants will return, she says. “If you find your group focuses only on the negative aspects of the diagnosis, it may be time to find a different group. Everyone should have an opportunity to share experiences, gain knowledge, and feel a sense of belonging.”

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PICK YOUR PREFERENCE

Support groups come in all shapes and sizes. Some people may prefer one run by a hospital neurology department where doctors, nurses, psychologists, or social workers open the meeting with medical updates and answer questions from participants, followed by an open discussion. A hospital may also be more convenient, especially if it has ample parking; offers stipends for public transportation; has easy access to bathrooms, especially handicap-accessible ones; provides meals or snacks; and features expert talks on topics ranging from new medications to exercise.

Community-based support groups are usually run by a lay or professional meeting leader and are designed for conversations among patients and/or caregivers. Several years ago, Michael Cartwright, MD, a neurologist who specializes in neuromuscular disorders at Wake-Forest Baptist Hospital in Winston-Salem, NC, helped start a support group with Vicki Ruddy, one of his patients. The group is for people with myasthenia gravis, a rare neuromuscular disease that causes muscle weakness. Now he and other specialists make presentations to the group, which sometimes numbers 20 guests and includes people of all ages, ethnicities, genders, and duration and severity of disease. Over the years, friendships have formed, says Ruddy.

“Patients have a different perspective than physicians,” says Dr. Cartwright. “It's good for other patients, especially those just diagnosed, to hear from those who've been through testing and treatment.”

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UNDERSTAND THE LIMITS

Support groups offer the opportunity to listen to other people's experiences and share your own. You may also learn coping techniques or hear about a newly approved drug or other medical advances. But support groups are not a substitute for medical care from your doctor, says Dr. Hirsch. “You should never cancel scheduled tests or stop taking prescribed drugs based on discussions in the group without a thorough conversation with your doctor,” he says.

When groups have expert physicians speak at meetings, those presentations are meant to provide general information only, not specific recommendations for participants. Even if you are able to ask a specific question about your own condition, you should never change anything about your treatment without first talking to your own doctor.

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ASSIGN A LEADER

All support groups need a driving force, says Dr. Cartwright. Whether it's a patient, physician, social worker, or nurse, that person needs to take control and determine the direction and structure of the group, he says. With the leader's help, the group can decide on a lecture format, a roundtable discussion format, or a more informal process. “But in order to be successful, the group needs one or two people who can keep it moving forward.”

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CONSIDER LOGISTICS

Convenience is just as important as setting and style when selecting a support group. “You and your family are already adjusting to so much after the diagnosis. Struggling to get to an inconvenient support group at an inconvenient time may make a good idea a bad one in practice,” says Suarez. Does it meet at a time that works for you and in a place that's easy to get to? Evening meetings might be best if you work during the day or if the person who would take you to meetings works during the day. A daytime group may be better if you tire easily at night and have no trouble getting to the meeting.

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ASSESS FREQUENCY

Some groups meet once a week or more, while others may only meet monthly or even quarterly. But most welcome participants whenever they can make it. “We know attendance can depend on how you're feeling, how you're getting there, or your own work schedule,” says Marilyn Oestreicher. For some people, the type of disease or condition they have dictates how often they meet.

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THINK REMOTELY

Advances in technology allow people to participate from the comfort of their own homes. That's good news for people who can't travel and for people who live in remote or small communities where in-person support groups may not exist.

They didn't exist for Rebecca Racenet in Wasilla, AK, whose child has tuberous sclerosis—a condition in which tumors develop in many different organs, including the brain, and can result in developmental delays and autism. “We are in a remote area, so the ability to reach out to others who ‘get it’ has been invaluable,” she says. Her support group helps relieve her burden. “It allows me to share my story, vent, ask questions about ways to handle situations, and know what to expect with procedures, insurance, behaviors, school, you name it.”

Online groups may also appeal to people who aren't ready to share their story in person but want to listen and share anonymously, says Drew of the Alzheimer's Association.

Mary Anne Meskis of Bourbonnais, IL, is part of an online support group for parents of children with Dravet syndrome, a severe form of epilepsy. Once family members are granted access, they are encouraged to post as little or as much as they want. “We do a very simple introduction—‘Please welcome Mary from Texas’—so families who live in the same state can reach out. We have found it very helpful for families to connect with others near them to learn about local services and physicians.”

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CHOOSE WISELY

The best support groups, either in person or online, build connections over time, stay open to new people, and create ways to welcome new members so they don't feel they're joining an exclusive club, says Drew. They also follow the rule that just because participants have something in common does not mean one member can dictate what another member should do. “I recommend saying, ‘Would you like to know what worked for me?’ That gives members the opportunity to hear strategies without feeling as though they have to act on them,” says Drew.

If, after a few sessions, the group doesn't feel like a good fit, try another, advises Rosalind Kalb, vice president of the Professional Resource Center at the National Multiple Sclerosis Society. Newcomers often fear they'll hear only distressing stories, she says. But if the group has a warm and positive atmosphere, you may learn new and creative ways to handle problems as your condition progresses. “Listening for a few sessions without sharing can help you decide if a group is right for you.”

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A Support Group Near You

When you're ready to join a support group, ask your doctor or the office staff about local groups, or check the patient advocacy office at your local hospital. Or call the local chapter of patient associations such as the Alzheimer's Association and the National Multiple Sclerosis Society to find out about local and online groups. You'll find links to local chapters on the national organizations' websites. Contact your local YMCA or YWCA to ask if it hosts support groups. Your pastor may also know about local groups or may be able to point you to community resources to help you find out.

Before joining an online group, ask about the rules. Groups that don't have a moderator may not be able to filter out unsolicited or unhelpful comments. Read the posts first to see if you find the comments helpful and supportive, says Lindsey Elliott, MSW, director of member initiatives at the United Spinal Association in Kew Gardens, NY.

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How to Start a Support Group

Can't find a local group? Start your own with these tips from the United Spinal Association.

Recruit co-creators. Identify two or three people who might be willing to help you start (not just join) a support group, preferably with strengths different from your own. Maybe one is tech-savvy and he or she can be responsible for creating a Facebook page or website or an email distribution list. Another might be good with words and able to make flyers, take notes during meetings, and keep everyone updated.

Assess need. Find out how many people in your area have your condition or care for someone who does and want to meet. Are there enough people for two groups, one for caregivers and one for patients? Patients and caregivers have very different needs and may prefer separate groups. Your group may decide to open the meeting to family members every three months or wait until the patient group is firmly established before opening it to families.

Determine frequency and emphasis. How often will you meet and where? What will you talk about? Groups usually meet once a month. That's often enough to sustain interest, but not too often to be burdensome. The simplest support group is a peer group, which is run by the leader or creator. A professionally led group would be run by a social worker or other health care professional. A discussion group usually has an educational emphasis and features a video or a speaker on a specific topic. Or it can simply be a time for members to discuss topics of interest or concern to see if others have suggestions or have had similar experiences.

Pick a place. For a location, reach out to your local place of worship, senior resource center, library, hospital, or YMCA or YWCA. Places like these might be willing to donate a room or make one available for a nominal fee. Look for someplace central that's accessible by public transportation or has good parking.

Advertise. Start with free advertising. Local newspapers often have a section for meeting announcements. Radio and TV stations such as your local community access cable channel offer free public service announcements about support groups. Ask your local patient organization if you can advertise on their Facebook page.

Keep the meeting announcement short and to the point. Include the date, location, time, a brief description, and who can attend in large, readable type, and post in appropriate places, such as the hospital, a rehabilitation center, churches, YMCAs or YWCAs, and any businesses related to your condition.

Direct the meeting. Welcome everyone, and ask each person to introduce him- or herself. Ask participants what they would like to hear or talk about and keep the meeting on topic. Carve out time either before or after the meeting for people to socialize informally, and make sure all attendees fill out a sheet with their address, email, and telephone number. Running a meeting takes practice, so don't expect the first one to be perfect.

For more information about support groups from the United Spinal Association, visit http://bit.ly/SupportGroupFactSheet.

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Support Groups Are Optional

“I don't think it's necessary for every patient to be in a support group,” says Michael Cartwright, MD, a neurologist who specializes in neuromuscular disorders at Wake-Forest Baptist Hospital in Winston-Salem, NC. “Some patients are not interested because their condition is mild or well controlled and they don't see a benefit.” Dr. Cartwright says he recommends support groups to patients and their families when they are first diagnosed, but leaves it up to them whether they choose to pursue it.

Bruce James, who lives in Silver Spring, MD, and was diagnosed with Parkinson's disease in 2009, finds support from his wife Nancy, his daughter and son-in-law, and three granddaughters who live in the same town. He's tied into the local Parkinson's Disease Foundation chapter and never hesitates to ask his doctor questions. He also raises money from friends once a year for a Parkinson's disease walk. They often ask how he's doing and offer encouragement, so he hasn't felt the need to join a formal support group.

© 2016 American Academy of Neurology