Support group guidance for patients and caregivers

Have you considered joining a support group before? Amid the twists and turns of caregiving for someone recovering from a stroke, TBI, or living with another neurological condition, it’s completely understandable that hurdles along the way might leave you feeling overwhelmed and/or isolated at times. It might even feel like there’s not enough time to attend to your emotional needs with everything you have going on.

We get it: you have a lot on your plate. Moments like that, though, are the perfect time to consider reaching out for the lifeline of camaraderie that support groups can provide!

Support groups bring together people on similar journeys in a powerful network of shared understanding. This BrainWire will talk you through how to find the right support group for you and your loved one’s needs as you navigate brain rehabilitation together.

What is a support group?

A support group is a gathering of people who share a common health condition, experience, or challenge. Those individuals come together, either online or in person, at regular meeting intervals to help each other cope with their experiences by providing emotional and practical support. Oftentimes, support groups have a specific focus—for example, stroke survivors or caregivers for people living with dementia.

Here are some of the benefits of attending that participants commonly report:

• Shared experiences and emotional connection: Sometimes, it takes having gone through something yourself to really get it. These groups offer a safe, nurturing environment in which to connect with others who’ve faced similar challenges and can truly empathize with where you are in your journey. The magic of support groups is that they’re made up of your peers, so they offer unique opportunities to bond and provide encouragement and strength to others.
• Practical insights: Support groups can also be a wellspring of real-world guidance, strategies, and tips to tackle daily challenges head-on.
• Inspiration and hope: Witnessing the milestones of others in similar shoes can help fuel your own determination and provide a new sense of hope and forward momentum.

How can I find a support group for my loved one on a brain rehabilitation journey?

There are a few levels of research you can engage in to find the right support group for your loved one!

First, it can be helpful to decide: What is your loved one hoping to gain from the experience? 

• Skill-building and social connection: For those seeking to build social support and improve communication capabilities at the same time, Triangle Aphasia Project leads various groups, both virtually and in person, which serve as venues to do so. Similarly, Adler Aphasia Center runs Aphasia Communication Groups that can help foster interconnection and communication among people living with aphasia. Those are just a few of the many examples out there, but they give an idea of what exists in the wider community!

• Emotional support: Meanwhile, other group settings are tailored to primarily address the emotional dimensions of a particular diagnosis or experience. Practicing concrete recovery skills will not be the priority of such groups. Rather, members aim to support each other through conversations about their feelings as they navigate recovery. For example, the Brain Injury Association of America curates a list of virtual support groups. In the same vein, the American Stroke association offers a handy locator tool based on zip code, as does the National Aphasia Association.

Once you know what type of support group your loved one is looking for, consider these tips for how to find the specific group that best aligns with their goals:

1. Start locally: Many local hospitals, clinics, and rehabilitation centers organize free support groups for people with a wide range of diagnoses. You might consider asking your SLP, therapist, doctor, or other clinician for recommendations. Alternatively, try calling the rehab, neurology, or neurosurgery departments of area hospitals for suggestions on local support groups.
2. Check national organizations: As mentioned above, organizations like the American Stroke Association, Alzheimer’s Association, and branches of the Brain Injury Association of America oftentimes maintain support group directories on their websites. Many even offer support groups themselves! They sometimes also offer helpful one-off webinars and events that can draw together people who are going through similar journeys.
3. Look to online communities and forums for direction: Searching the internet for support groups by condition and location can be a helpful starting point. (For example: “Boston-area stroke support group.”) Online platforms like Reddit and Facebook also have many sub-groups and forums for specific conditions. On those pages, people can engage in honest discussions, ask questions, and share advice—much as people would in a support group! In fact, forums can sometimes mirror the effects of a support group. Alternatively, they can merely be used as a channel to find a dedicated support group!

As a caregiver, how can I find the right group for myself?

As we’ve written about in the past on BrainWire, you matter! Your dedication to your loved one is admirable. At the same time, it is essential to extend yourself the same grace and care that you give to your loved one—and one aspect of that lies in finding a support network. These groups are a great way to find such a group of people.

The same general principles for finding a support group for your loved one apply to finding one for yourself! Just as your loved one’s journey is unique, so, too, is your path as a caregiver.

In fact, there exist many specialized groups that are tailored to caregivers with particular backgrounds or who care for individuals with specific medical conditions. Some groups, for instance, connect people of a shared cultural background and caregiving experience. One example is the caregiver support group hosted by the Latino Alzheimer’s and Memory Disorders Alliance.

In addition, many national organizations—including several of those mentioned above—also host dedicated groups just for caregivers! This includes Triangle Aphasia Project’s support groups for care partners, Family Caregiver Alliance’s Caregiver Online Support Group, and the Brain Injury Association of America’s various caregiver support groups. 

There’s strength in unity and empathy

It goes without saying: caregiving demands a lot from you—emotionally, physically, and mentally. You are doing so much to support your loved one in every way possible on a daily basis. While that can undoubtedly be rewarding, it can also leave you needing support yourself.

We hope it provides comfort to know that you don’t have to go through that process alone, however. Even if you’re not a member of a formal group yet, you are already part of an extensive community that stands ready to uplift and guide you as you navigate the journey of caregiving. Joining a support group will simply allow you to consciously embrace that community so that you can take your next steps forward with strength in connection.

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