The Nerve Center


Apr 21 2014
Many Kinds of Groups for Chronic Conditions
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Recently, I had the pleasure of participating in a panel discussion at St. John's Communities on the Lake. Several staff members of St. John's and at least 30 residents were in attendance to discuss the topic of chronic conditions and how to support those individuals that had one or more diagnosis. It was a lively discussion among a very bright and committed group of individuals. These are some of the "tips" I highlighted for the future discernment of the group.

Reserve judgment as to whether you need a "support group" specific to a disease, an exercise group, an empowerment group or a periodic educational presentation.

First, learn the disease – start with the information your physician recommends, then peruse legitimate websites (typically .edu, .org or .gov.) and current books and journals. Seek out a workshop or educational event for people newly diagnosed with that disease. Quarterly, we offer a 2-hour workshop for people new to Parkinson's and their families. We have something similar for stroke and epilepsy.

"Living Well with Chronic Conditions" teaches self-management and empowerment. The six-week class lends itself perfectly to follow-up sessions after the six weeks. Perhaps what is needed, is not a disease-specific support group, but rather a "Living Well" class with a monthly commitment that interested members meet to stay on track with their plans and goals.

"Optimize: Your Brain and Body Health" teaching physical fitness and cognitive practice is another example. The eight-week class also lends itself perfectly to follow-up sessions after the eight weeks. It is designed for people with mild cognitive impairment and their care partners, but is perfectly appropriate for anyone with normal aging issues.

If you decide to enter an existing support group with, do so with eyes and minds open. Decide you are going to use the mantra "my ___ (fill in the blank with your condition, such as 'Parkinson's') is unique to the individual, and I am not here to figure out my future or add stress and worry."

Don't attend just once. It takes a few times to understand the format and dynamics of the group. Discover the mission of the group.

A support group always needs two co-facilitators. They can divide up the pre-planning, be available if one is called away unexpectedly and lend support to each other.  Facilitating support groups can be emotionally draining.

Opt only for groups that use a positive psychology model and self-empowerment. You don't want a group to be a communal hand-wringing session where everyone reports what bad thing happened to them in the last month. Support groups are not therapy sessions, nor are they medical treatment sessions. There are support groups for men, women, care partners and people with the condition attending with a family member or friend. Support groups need to function confidentially. Think about that when starting groups in the place where you live. 

I believe that groups for caregivers-only are very important, especially when the loved one's disease is quite advanced. I also believe that the right person to facilitate those groups probably should not be in need himself/herself. Facilitators with some background in grief counseling or social work might be best qualified to lead caregiver groups.

Finally, the more the facilitator knows about the disease, the better. A group composed of only people carrying a diagnosis can be easily derailed when members start talking about their medications, signs and symptoms. Someone needs to direct and re-direct the discussion. A leader should know that medication discussions should be one-on-one between medical professionals and the patient. The facilitator needs to know what symptoms can be related to the disease, and when to make the statement "you need to speak to your neurologist about that."  Mostly, they need to know the non-medical interventions that can be of help. Following is a list of topics I have covered in my groups over the last year.

  • Yoga therapist and mind-body instructor to discuss and demonstrate practices complementary to medical treatment

  • Genetic counselor to explain the field of genetics and what a counselor does, as well as genetic links for specific diagnoses

  • Exercise leader to discuss and demonstrate practices appropriate for particular diagnoses

  • Speech and language pathologist to describe the therapies involved, including swallowing and cognition

  • Specialist from the Milwaukee County Department on Aging recruiting members for a randomized trial to examine the effectiveness of an internet tool called Elder Tree designed to help older adults remain independent

  • Registered dietician to talk about "super foods," hand out samples, prepare a nutritious smoothie and address dietary issues specific to a particular disease

  • Physical and occupational therapists to describe those modalities and offer tips and tricks for patients and care partners

  • Laughter therapist

  • Potluck dinner or lunch for socialization

  • Small group sharing with "active listening" to assure that everyone has a chance to speak

That's ten sessions with a summer and winter hiatus. It's positive, and educationally based. It provides the socialization that's so important for our mental and physical health. If, like the folks at St. John's, you are thinking about starting a new group, spend lots of time talking, planning, researching and visiting groups. Create a mission statement for the group. It can't be all things to all people, all of the time. 

Visit the Froedtert & the Medical College of Wisconsin website for information on a variety of diagnoses at www.froedtert.com. Click on "Health Resources" for a list of community education events and support groups.

Visit the Wisconsin Institute on Healthy Aging for information on "Living Well with Chronic Conditions, Stepping On and Powerful Tools for Caregivers" at https://wihealthyaging.org/.

Visit the Caregiver Support Network in Milwaukee County at www.caregiversupportnetwork.org/.


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