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Choosing the Right Caregiver Support Group

Comments [12]

CORE Health Care

Choosing the Right Caregiver Support Group

Many caregivers have found that talking to other people who are also caregivers, and can understand their experiences and feelings about caregiving, can be an extremely powerful method of coping (Nahls, 2001). Support groups can provide an opportunity for people with common experiences and problems to give emotional support to one another, as well as to share information and to learn skills from eachother (Llardo & Rothman, 1999). One of the main benefits of a support group is that it helps caregivers to see that they are not alone in their experience, as others are having some very similar experiences. This can make it easier to continue to do what it takes to care for their loved one (Barg, 2001).

As a caregiver, support groups can offer you the opportunity to improve your coping skills, to learn specific skills that are helpful in managing your caregiving responsibilities, and to hear experiences from others that might provide you with solace when you are feeling stressed or feeling at your wit's end with the caregiving experience (Llardo & Rothman, 1999).

There are many different kinds of support groups and it is important to find the one that fits for you. Anyone can create a support group, so groups can vary widely in content, approach, and quality. You may need to attend the group to see what it is really like before making the decision whether this is the right one for you. Also, it is important to try to keep an open mind and not decide immediately if this is the right one for you. It might be a good idea to give the meeting three tries before making a decision about it (Brown, 2004).

Here are some of the suggestions given by Llardo and Rothman (1999) for what to look for when choosing a support group:

  1. Look for a group led by a person with professional credentials. The skills and training of the group leader can make the difference between a positive and negative group experience.
  2. Look for a group that has been in existence for some time. Groups that are not run well will tend to dissolve quickly, while well-run groups constantly attract new members.
  3. Look for a group with clear goals. The group you join should have a clear overall focus.
  4. Understand who the group is for. Some groups are general in nature catering to the needs of all caregivers, in general, while there are also groups that are specifically geared for caregivers of brain-injured individuals.

There are benefits to both types of groups, so your decision about which is the right type should be based on what feels most beneficial to you.

  1. It is important to realize that a support group is not intended to provide psychotherapy for its members. The goal of a support group is to provide support for issues affecting caregivers, not to focus on issues that are more personal in nature. A competent group leader should recognize those group members in need of more intensive psychological help or support and make the appropriate referrals for them. These group members should not be allowed to take over the focus of the group.
  2. When choosing a group, decide whether or not the format of the group feels right to you. This is based on your own personal preference. Here are some possible formats:


  • There is a pre-set number of sessions and a specific topic chosen for each session.
  • The group may be open-ended, less formal, and focused on sharing the emotional experiences of the caregivers. Group members are encouraged to share their experiences and members provide emotional support for each other.
  • In some groups, once the group is formed, no new members are allowed in. Other groups may allow anyone to join at any time.
  • Groups vary in how often they meet: weekly, bi-weekly, or monthly. So you need to decide what frequency is most convenient and helpful to you.


Here are some other things to look for, as suggested by Llardo and Rothman (1999). For these criteria, you need to trust your own gut feelings.

Do you enjoy attending the group and do you feel that you are receiving benefit from it or do you leave feeling more upset than when you arrived? If it is the latter, then this support group may not be the right one for you.

When you share your feelings in the group, do you feel that they are accepted, or do you feel awkward afterward due to the response of the leader or group members? Again, if it is the latter, then this support group may be the wrong one for you.

Is it comfortable to express negative feelings or are you made to feel guilty, weird, or "bad" for expressing such feelings? While, a support group should not be a "pity party", it should be a place where members feel comfortable expressing their emotions, both positive and negative.

Does the leader stay in control of the group discussions or does the discussion meander in every direction with nothing useful coming out of the session? Is one member allowed to dominate the group or to monopolize the time? A competent leader will exert enough control to focus the discussion in a logical direction and to give everyone a fair opportunity to speak, but not so much control that people feel intimidated.

Try not to be discouraged if the first support group that you try turns out to not be the right one for you. Be patient and keep trying other groups until you find the right group. Many support group members would say that this investment of time and energy is well worth it (Udoff, 2001).

Barg, G. (2001). The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still Have a Life of Your Own. Capital Books, Inc.: Herndon, VA.

Brown, T. (2004). Support Systems: Connecting with Other Caregivers. Caring Connections Website.

Llardo, J. & Rothman, C. R. (1999). I'll Take care of You: A Practical Guide for Family Caregivers. New Harbinger Publications, Inc.:Oakland, CA.

Nahls, C. (2001). "Specialized Caregiving." In Barg, G., The Fearless Caregiver. Capital Books, Inc.: Herndon, VA.

Udoff, H. (2001). Alzheimer's Association - Massachusetts Chapter Newsletter, Vol. 19, Number 3.

From CORE Health Care. Used with permission. www.corehealth.com

Comments [12]


My name is Jessee. My Mother has brain damage. She also has other health conditions. I am looking for a good group that I can discuss these problems with.

Last year she had a PET scan performed on her that showed damage around the whole brain. The findings said possible Alzheimer's, frontal temporal dementia or Parkinson disease.

Most recently she has been diagnosed with POTs, retro active hypoglycemia, Tricuspid Regurgitation and interstitial cystitis.

A week and a half ago she had results come back from the doctors that was very concerning. All of her cortisol results came back abnormal. Some results were very low, and others came back high. She had blood, 24 hour urine and 4 salivary cortisol tests conducted.  

Next Tuesday she is going in to have a ACTH test completed.

I am just looking for a group that I could talk to.

Thank you


Apr 25th, 2016 5:42am

There's this group in FB https://www.facebook.com/groups/416379471806758

Since my husband's brain injury we lost everything and don't have a fixed address anymore. He's paranoid and delusional now, so he always wants to run and be in hiding so we're always moving about (as we don't have the cash to do much else just now) and that means he and I can't really get any help. Every attempt I make to settle us results in him refusing to co-operate. As I have my own physical health issues and can't drive much, it makes it impossible for me to do anything without him - especially since he's now obsessive and controlling as well.

Dec 8th, 2015 5:30pm

Did anyone find a online support group? I need one too as the spouse of a tbi survivor. If not, I'm going to start one!

Nov 1st, 2015 1:12pm

For those of you living anywhere near Seattle, we have a support group specifically for caregivers of people with brain injuries. Their blog includes current information about meeting dates and locations, a variety of articles (your comments are encouraged), and links to local organizations and resources: nwbicablog.wordpress.com

Sep 25th, 2015 12:44pm

Hi I'm looking for an online support group to help me cope and understand my fiancé's brain injury. He had a Grand mal seizure that lasted roughly 12 minutes then his mom had to preform cpr on him. He was intebated and has been in a coma for a month, or persistent vegetative state.he was sedated for the first 2 wks but is no longer. He opens his eyes but does not follow commands or track anything. I am a mess cause its all the not knowing and wondering why doctors are not doing more tests to get some answers. Can someone point me in the right direction.

Aug 15th, 2015 5:48am

I would like to know if there is an elder tbi support group i have been taking care of my Father  and could use some support as well! avanlueinc@aol.com

Jul 29th, 2015 11:46am

have been a caregiver to my husband joefor more than 7 yrs..he is 9 yrs out..there isnt any support groups in our area at all, there are a few taht are over an hr away, joe is also a Nam combat vet, so even the v.a. cant help..joe sustained a m/c accident back in '05..he was in a nursing home for about a yr and a half.."one of the best" in nuero-rehab"..not,,so i brought him home..im in constant battle with either the state or the v.a.  thats whats so tiring.. constant battle with how things are supposed to be done..and neither one knows what they are doing..so im in constant  battle mode..  many blessings to those who keep it going on..  

Oct 21st, 2014 7:49am

i am a spouse of a brain cancer survivor. i agree, my husband looks similar but is not the man i married.. i am overwhelmed most times and have gone through every emotion possible. if someone in my situation needs to talk.. you can email me balogh@balogh.com  in the subject line put BRAIN INJURY in caps so it doesn't accidentally get deleted. talking to someone else in the same boat works miracles. Pam

Oct 1st, 2014 9:23am

I have been a caregiver for over 20 yrs and I am at the end of my rope. Every medication change brings on new or old demons.

 I need help!

Sep 5th, 2014 12:15pm

I really wish that there was a support group for caregivers. I used to use a fantastic website called tbihome.org but they changed their format and now the site has been unusable for more than a year. At the local rehabilitation center they have support groups for tbi individuals but nothing for caregivers. At one time they did have one for caregivers but only 4 of us would meet. The 3 were parents of a tbi person but I am the spouse of a tbi person and no one in my group could relate to what I was going through. I often look at my husband and think, "You are not the man I married." And in a lot of ways it's true. The man I married died on the day of his accident. What remains is someone who looks like him and sounds like him but personality wise is not him. I feel so alone in this journey and am disappointed that I don't have a support group to go to in person or one I could use on the internet like I used to.

Jul 23rd, 2014 6:15am

there are no support groups for caregivers, we are the ones who need it more than the injured party!

Jun 3rd, 2014 8:02pm

Hi could u recommend a online support group please

May 20th, 2014 10:58am

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