Choosing the Right Caregiver Support Group

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).

What to look for when choosing a caregiver support group

Here are some suggestions of what to look for when choosing a support group:*

  • 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.

  • 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.

  • Look for a group with clear goals.

    The group you join should have a clear overall focus.

  • 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 individuals with brain injury. 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.

  • 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.

  • 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. 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.

Don't feel discouraged!

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).

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

Posted on BrainLine September 21, 2009.


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.

Comments (21)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

My husband and I had an amazing life. He was a Pharmaceutical Rep for GSK and I was a schoolteacher. We had a beautiful home located on Bayou Teche and and apartment in New Orleans, LA. I couldn't have asked for more. However, on May 18, 2003, my husband put the boat in the bayou at a nearby boat landing and drove across to get me, as I was waiting on our wharf. He pulled up and requested I bring our dog, Gizmeaux, our beloved Border Collie, so I came back in our house and returned to the boat with Giz. As we went down the familiar bayou, the boat traffic was noticeably congested. Approximately, after traveling 3 miles, in a split second our lives changed forever. Due to the boat traffic, people pulling their kids on hydro slides, etc., we had to stay to the left to maintain proper boating courtesy. Suddenly, our boat hit a submerged limb protruding from a large tree which had had been blown over by Hurricane Lily, several months earlier. Our boat came to an abrupt stop causing me to fly to the front of the boat, and resulted in my husband hitting his head against the trunk of the tree extending out over the water, almost midway the bayou.

Hi, are there any support groups for spouses and family of TBI survivors in Las Vegas? Desperately looking for one.

Hello, did you find a support group in Las Vegas? Also, looking for one!

Hi,I,am in need of a support group. My Son was injured twenty five years ago . I need some support for myself . Tired of the loneliness .

Like one of the women above, I am the spouse of a brain injury survivor. He looks fine, and in many ways is just like before his accident, but in many ways, he is a stranger to me. I need a support group but cannot find one. I sought counseling for a couple of years but it is expensive, and the counselor did not understand TBI. It does not look like anyone replied to any of the above requests so I am not sure that I am not just typing in the wind.

Hi, Ann ~

My husband was hit by a car in October 2017 and was only discovered 2 months later to have sustained a concussion. We are in month 9 of his recovery, and I am looking for a support group. Like your spouse, mine seems in many ways fine, but the cumulative stressors are mounting. If nothing else, I hope this message reaches you so that you know that you are not alone--that the wind blew your words to at least one person. If you would be interested in talking more, I hope you will write back. Sending you and your husband stamina and courage, Kate.

Hi Ann, my husband was in a car accident in Oct 2017 as well. I am desperately looking for a support group to help me better support him and help me understand more so I could better navigate this new challenge. I stumbled upon your post and others and they resonate with me deeply. I feel so overwhelmed confused sad hurt and powerless at this moment. Just wanted to reach out to see how you are doing currently. Thank you for reading my post.

I am the spouse of a brain injury survivor. I understand the feelings that go with this new role: depression, confusion, loneliness, anxiety, anger, guilt, frustration, and
sadness to name a few.
I have not been able to find a support group and family is not understanding.

Hi there. My name is Aimee. My mother was diagnosed with brain and eye cancer. I have been her main caregiver since we live together. I have my own chronic pain issues. I don't have much family as support and people around me just don't get it. I am feeling really depressed. I thought my mom was out of the woods but lately I am concerned. She doesn't seem to care about anything and that isn't like her? My sister helps when she can but I get the impression lately that she just makes excuses not to come around. Looking for a group of people like myself going through this. It is weighing heavy after 2 years. Wondering if I will ever feel happy or not again. We are both home bound so maybe something online?


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


There's this group in FB

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.

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!

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:

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.

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!

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 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 im in constant  battle mode..  many blessings to those who keep it going on..  

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  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

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!

I really wish that there was a support group for caregivers. I used to use a fantastic website called 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.

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

Hi could u recommend a online support group please