The 7 Best Caregiver Support Groups of 2020

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First Look

Best Overall: The Caregiver Action Network at caregiveraction.org

"Specializes in providing education and peer support, and resources to family caregivers across the nation."

Best for Dementia Caregivers: The Alzheimer's Foundation of America at alzfdn.org

"Specializes in providing educational and supportive services for caregivers of people with Alzheimer's or other dementias."

Best Local (In-Person): The Alzheimer’s Association at alz.org

"Offers a wide range of support groups in many geographic areas in the U.S. that are run by trained facilitators."

Best for Working Daughters: Working Daughter at workingdaughter.com

"For caregivers trying to hold down a job, care for their own family, and take care of an elderly parent"

Best for LBGT Caregivers: Family Caregiver Alliance at caregiver.org

"The group features online chat via an email format for LGBT caregivers."

Best for Parents with Kids with Special Needs: Parent to Parent USA at p2pusa.org

"A free program that matches parents of children with disabilities via a 1-to-1 support partnering relationship."

Best for Mental Illness: National Alliance for Mental Illness (NAMI) at nami.org

"Offers a peer-led Family Support Group for caregivers and family members of anyone with a mental health condition."

In 2005 it was estimated that approximately 43.5 million adults in the U.S. have provided unpaid care to either a child or another adult. That number increased to 53 million in the 2020 report published by the National Alliance for Caregiving (NAC) and AARP.

Today, family caregivers represent over 1 in 5 Americans and that number continues to grow as the aging population increases and more people are diagnosed with debilitating disorders that require daily care.  

Another fact that the 2020 report revealed is that caregivers are in worse health today than they were in 2015. A phenomenon commonly called “caregiver stress” results from the many tasks and responsibilities that caregivers take on when they step up to the plate to care for a debilitated loved one or a child with a chronic illness.

As a result, caregivers are more likely to develop physical disorders (such as diabetes and high blood pressure) and they are at high risk for disorders of aging—such as Alzheimer’s disease—themselves. Caregivers are also at risk for mental health disorders such as depression and anxiety.

Other statistics from the 2020 report include:

  • 61% of caregivers were employed
  • 53 million, up 21% from 2015
  • 26% of caregivers reported difficulty coordinating care
  • 21% of caregivers reported being in fair to poor health themselves

These statistics indicate that there’s more reason than ever before for caregivers to be aware of the need for self-care today. One factor, found to improve the overall well being of caregivers, is the benefit of attending regular support group meetings.

In fact, a 2018 environmental study involving real-time chat in a virtual setting found that the evidence shows that support group interventions effectively helped participants lower mental health problems and improve psychological well being. With that in mind, here are our top picks for caregiver support groups.

Our Top Picks

Best Overall: The Caregiver Action Network

The Caregiver Action Network

The Caregiver Action Network

The Caregiver Action Network (CAN) is a nationwide non-profit organization aimed at helping to support all types of caregivers, including family caregivers who are parents of children with special needs, caregivers helping wounded veterans, as well as caregivers for people with dementia and other age related debilitating disorders.

CAN specializes in providing education and peer support (via a large community of various caregivers) and resources to family caregivers across the nation and all of the services offered are free of charge.

CAN also offers a free help desk (via chat, email, or telephone) to answer any questions you may have about the organization, how to find a support group, or about specific caregiving challenges. Other methods of contacting the Care Support Team by phone is calling 855-227-3640 between the hours of 8:00 A.M. and 7:00 P.M. EST. 

You can also access the Caregiver Action Network social media pages and join the organization’s Twitter or Facebook page

There is a forum for caregivers, a blog of caregiving stories, and a resource list of organizations and foundations that specialize in supporting all types of caregivers.

Another great feature for caregivers is the list of local volunteers who provide advocacy training and education about various medical conditions. These volunteers have experience in being caregivers themselves, therefore, they provide a great opportunity for you to vent your feelings and de-stress as they lend an ear to listen, while truly understanding what all you are going through.

The Family Caregiver Toolbox offers resources on everything from respite care to current clinical trials, as well as how to deal with depression and much more.

There are many support resources for various specialty categories, including a chat forum for spouses who are caregivers and information on support groups for those caring for people with these conditions:

Best for Dementia Caregivers: The Alzheimer's Foundation of America

The Alzheimer's Foundation of America

The Alzheimer's Foundation of America

If you are caring for a person with dementia, the Alzheimer’s Foundation of America (AFA) is a great place to get connected with a support group. The AFA specializes in providing educational and supportive services for people who are caregivers for a person with Alzheimer’s disease (AD) and related dementias.

It’s a nationwide, non-profit organization that was founded in 2002 by a dementia caregiver who cared for a mother with Alzheimer’s disease for 12 years (from 1980 to 1992). During that time, there were reportedly very few resources for caregivers, the founder of the AFA vowed to help to change that.

The AFA knows that although caregivers may be known as heroes in many circles, there is one thing most caregivers are short on, that’s time. So, the organization provides a National Toll-Free Helpline at 866-232-8484, staffed by licensed professional social workers, who are trained to provide answers to questions and point caregivers in the right direction (when looking for support groups and other services) via its 24/7 helpline.

In addition, the AFA offers free weekly telephone support groups that are professionally facilitated by licensed social workers.

Most organizations sponsored groups are managed and facilitated by laypeople. AFA provides a rare opportunity to receive professional help in connecting and sharing with other caregivers across the country. 

The groups are held on Mondays and Thursdays, 7 pm-8 pm (EST). To register for a caregiver support group, call the AFA’s National HelpLine from 9:00 AM to 9:00 PM on weekdays and 9:00 AM to 3:00 PM on weekends at 866-232-8484.

Best Local (In-Person): The Alzheimer’s Association

The Alzheimer’s Association

The Alzheimer’s Association

For some people, there’s no substitute for getting and giving support on a face-to-face, in-person basis. There’s a few important things that a virtual meeting cannot provide, such as the impact of human touch.

To some extent, because caregiving can encompass a broad range of caregiving services (including various conditions, ages of care recipients and more), doing a local Google search in your area may produce the best results. 

But, if you are caring for a loved one with AD or other forms of dementia, The Alzheimer’s Association offers a wide range of support groups in many geographic areas in the U.S. The groups are run by trained facilitators and all support groups are free of charge.

The Alzheimer’s Association is a non-profit organization aimed at providing education and support to people with Alzheimer’s disease and related dementias. Through their nationwide network of local offices, the organization offers in-person, caregiver support groups across the country. The groups are facilitated by trained individuals.

You can use the search tool to enter your geographic location and find out when and where a meeting is taking place near you. If you need help navigating the website or finding a local meeting, you can call the 24/7 Helpline at 800-272-3900

Best for Working Daughters: Working Daughter

Working Daughter

Working Daughter

Working Daughter is a website as well as an online Facebook-based support group for working daughters who are caring for their elderly parents (or other care recipients).

When a person takes on the many tasks of caregiving while holding down a part-time or full-time job, the juggling act can be of a real challenge. Add to it, the responsibilities of having a family of your own, and something may feel as though it has to give. This is the reason Liz O’Donnell founded Working Daughter in 2015. 

Liz was a marketing executive by trade, but after caring for each of her elderly parents, she put her focus on helping other working daughters balance their work and family lives with caregiving.

O’Donnell also wrote an award-winning book called “Working Daughter: A Guide to Caring for Your Aging Parents While Earning A Living.” The book was deemed one of the Best Books of 2019 by Library Journal. For caregivers trying to hold down a job, care for their own family and take care of an elderly parent, the book can give you some practical advice.

 Liz also started the WorkingDaughter online support group on Facebook. It’s a free private group that enables you to connect with other working caregivers. To get access, you must sign up first. You can also listen to the Working Daughter Podcast

The Facebook-based support group and podcast audios are free of charge to those who want to join or listen.

Best for LGBT Caregivers: Family Caregiver Alliance

Family Caregiver Alliance

Family Caregiver Alliance

Family Caregiver Alliance is Caregiver.org’s LGBT-caregiver group. According to the National LGBT Cancer Network, unpaid caregiving for a chronically (long-term) ill adult is more prevalent among LGBT individuals than it is in the heterosexual community.

In fact, a 2014 study found that while 1 in every 6 adults in the United States provides unpaid care to an adult who is ill, 1 out of every 3 LGBT adults serve in the role of an unpaid caregiver.

The National LGBT Cancer Network reports that caregivers who are lesbian, gay, bisexual, or transgender received lower levels of social support than others, making the LGBT caregiving community need of a solid support group.  

The Family Caregiver Alliance offers an online community for LGBT (lesbian, gay, bisexual and transgender) individuals. The group features online chat via an email format; once you sign up, you can send and receive emails to other caregivers in the LGBT community 24 hours per day, 7 days per week. 

You can ask questions, get support from other group members, or share your ideas and strategies on what has worked for you as a caregiver. The idea is for members to share experiences and help each other solve the many challenges of daily caregiving, whether you are caring for a child with special needs, taking care of an elderly family member, or a partner who has become disabled and is in need of ongoing care.

Once you subscribe to the list you can post messages by using this email address: lgbt-caregiver@lists.caregiver.org.

Best for Parents with Kids with Special Needs: Parent to Parent USA

Parent to Parent USA

Parent to Parent USA

As a parent or caregiver who cares for a disabled child, you may share many things in common with others going through similar circumstances; but some challenges are specific to each child’s type of disability. Consider how a child with autism differs drastically in the type of caregiving required, compared to a child with muscular dystrophy.

Parent to Parent USA is a non-profit organization that is aware of the unique challenges parents have when dealing with different types of disabilities; so they created a free program that matches parents via a 1-to-1 support partnering relationship.

The match is made according to the type of disability each child has been diagnosed with. That way, caregivers can share information about specific resources and experiences, solve problems and help to give and get emotional support. You can find local resources in your local community on the Parent to Parent USA website, including how to sign up and a Spanish language version of the website.

Best for Mental Illness: National Alliance for Mental Illness (NAMI)

National Alliance for Mental Illness (NAMI)

 National Alliance for Mental Illness (NAMI)

A caregiver who cares for a person with mental illness usually involves helping a person with schizophrenia or other types of serious and persistent mental illness. Learning about how to accept and cope with mental illness in a positive manner can be challenging. That’s one reason that NAMI offers ongoing support groups for caregivers and family members.

NAMI is a national non-profit organization that offers a peer-led Family Support Group. The goal of the group is to support caregivers and family members of anyone who suffers from symptoms of a mental health condition.

The support groups offered by NAMI follow a very structured model in which facilitators are trained. The groups are 60 to 90 minutes in duration and meet every other week or monthly (depending on the location).

NAMI hopes to help group participants to become more empowered by sharing experiences with those who listen non-judgmentally. All groups are free of cost to participants. Find a NAMI support group near you on their website.

How We Chose the Best Caregiver Support Groups

The caregiver support groups were selected by an expert in the field of dementia, Alzheimer’s disease and family caregiving. The most important consideration when choosing the organizations was the legitimacy of the website and the organization as a whole.

We looked at how long the organization has been established, who is moderating/facilitating the groups, what type of training facilitators have, and more.

Next, we chose a wide selection of various group models, including online forums, social media groups and in-person groups, hoping that at least one will be a good fit for each caregiver searching for a valid source of information and a solid ongoing support group.

What Are Caregiver Support Groups?

Caregiver support groups are basically a place to go to learn more about caregiving (for various types of conditions), get and give emotional support, and share experiences.

A person who has been down the road you are now traveling on, may have some pretty good tips on how to handle the challenges you may be facing. In turn, as you become more educated and experienced as a caregiver, you will probably have some valuable information that will help others in the group, particularly newcomers.

Each type of group is structured differently. Some offer telephone conference meetings, others take place online, via chat, or email, and the local meetings occur in-person. But all caregiver support groups are aimed at facilitating a connection between caregivers who can help each other along their journey.    

Is a Caregiver Support Group Right for Me?

There are no two people who are exactly alike when it comes to a person’s need for getting support. Some people feel at ease in a group, others become anxious when it comes to speaking in front of others, particularly strangers. That’s why there are different types of groups on our list.

An online forum may work perfectly for those who express their feelings better in writing, whereas others really need to see (and sometimes hug) another human being. Caregiving can be a very isolating experience for some people, who may really need to socially interact with people in their support group meetings.

Others might become overwhelmed during caregiving, needing nothing more than to find a quiet place to sit down, contemplate, and express their emotions while sharing their thoughts in writing.

If you are the type of person who needs more structure than a peer-led group can provide, you may consider one of the caregiver groups listed that offer licensed moderators, or you may rather explore the option of reaching out for professional help from a therapist or counselor via 1-to-1 counseling or group therapy.

How Are Caregiver Support Groups Structured?

Each group has its own format, some are very structured, while others offer a more casual interactive approach. In general, the groups that are facilitated by a professional or a trained moderator will be those that offer more structure and peer-led groups may involve a more relaxed approach.

The specific type of structure the group offers is a question you can ask when initially making contact to inquire about a group. But for the most part, every group will involve an opportunity for each member to share their experiences, ask questions or vent their emotions in a non-judgmental setting.     

What Do They Cost?

Each of the support groups on our list offer groups is free to join and free to participate in.

Do These Groups Accept Insurance?

For the groups on our list, insurance payment is not applicable because they are free of cost. However, if you decide to check out professional individual counseling or group therapy, you may want to check with your insurance provider to find out if the service is covered.  

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Article Sources
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