10 Tips for Finding the Best Caregiver Support Groups

Certified Care Manager, Aging Life Care Professional, and National Master Guardian Emeritus

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As a caregiver, you may be faced with tasks you never imagined yourself doing. Family caregiving is becoming more complex and time-consuming, and it is easy to get overwhelmed and frightened. You want to provide the safest and best care possible for your loved one, but may not know how to go about doing that.

Even something as simple as using a wheelchair when your family member gets home can go from easy to difficult in a matter of seconds. As a result, finding caregiver support groups can end up becoming a lifeline of ideas, how-to’s, and emotional support when you need it most.

Let’s take a look at some of the ways a caregiver support group can help. As a caregiver, it can be beneficial to see the ways in which a group can ease your burden. They may also provide ideas you may have never considered. Understanding the value of support groups may help guide your efforts in finding the best group format for your situation.

Tip: If you were caring for a loved one who passed away and now have to plan a virtual service for them, some platforms like GatheringUs have specialists who can guide and support you through the planning process.

1. Emotional Support

Knowing that others are going through the same stress and strain can be invaluable. Emotional support involves the non-judgmental acceptance of what you are going through and the validation of your experiences. You can offer that same support to others.

As a caregiver, you may have feelings of shame, distress, anxieties, and fears. Being able to express those feelings with others helps build resilience and strength in knowing that you are not alone. We all want and crave a sense of belonging and community. Support groups can be your surrogate family when you need it most.

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2. Ideas for Approaches on Care

As a caregiver, you may be taking care of someone with medical problems, cognitive issues, or both. In the case of a family member with dementia, behavior difficulties are common, with everything from agitation, wandering, to getting someone to take a shower.

Support group members can give you ideas on how to manage these behaviors. Having a group approach can give you some direction. As a harried caregiver, you may sometimes feel alone in your own world of problem-solving. Having more heads than one can really help give you some fresh ideas and a more positive outlook.

3. Hands-on Caregiving Tasks

It is not unusual for family caregivers to perform a dizzying array of medical tasks, and many have no training or guidance on how to safely perform these tasks. This includes everything from catheter care, wound care, medication management, and toileting, just to name a few.

People who have lived these caregiving experiences can offer ideas and techniques on how to safely and efficiently perform these duties. For a loved one with dementia, it can be especially helpful to have different viewpoints on how to handle such problems as aggression, sundowning, medication non-compliance, and poor hygiene.

4. Family Support and Conflict Management

Caregiving is not without its family conflict and disagreements. These conflicts can add to the stress of daily caregiving and it can be difficult to know how to manage family tensions while still maintaining the integrity of those relationships.

Support group members can help with ideas on controlling emotions and using communication techniques to keep family relationships (and even your marriage or partnership) on an even keel. Some aging parents refuse help altogether, making caregiving that much more difficult and stressful. 

5. Being a Long-Distance Caregiver

If you are a long-distance caregiver, you need and deserve support. Even if you are not doing hands-on care, your role is important. Long-distance caregivers often feel left out and unsure how to help.

Support group members can give you suggestions on how to be a valuable member of the family caregiving team. This may include ideas on how to help organize tasks, assist with pre-planning, or do some research to connect other family members to support groups.

Support groups are available in a variety of places. Some people prefer groups that meet in person and others like online discussion forums and many people do both. There are lots of options to cater to almost every situation.

6. Online Support Groups

The advantage of online groups is that they can be joined from anywhere at any time which can be a benefit for busy caregivers. You don’t have to leave home to access thousands of like-minded individuals who understand what you are going through. As a busy caregiver, you can access these groups when it is convenient for you. If you don’t like one group, there are others to choose from. Some people belong to several groups.

The best way to start finding caregiver support groups that are tailored to your needs is to simply do an online search. Some groups are tailored to specific situations such as Alzheimer’s and dementia. Facebook has several caregiving forums as well, and it can be helpful in locating what you want by going directly to groups then putting in your search term.

AARP has a robust caregiving resource guide and community. The American Society on Aging also has a nice list of caregiver resources along with links to caregiver support groups. There are many others as well. Take some time to do some exploring and you will be amazed at the support and information you will find.

If you're unable to join a support group, consider reading a blog or forum for caregivers for some extra support.

7. Caregiver Videos 

As caregivers are expected to perform more and more complex tasks without any training, videos can be a huge help. You may have experienced the stress of a loved one being discharged from the hospital back home with only you as the main support and care provider. Even the basics such as doing blood pressure checks or managing medications can be overwhelming in the face of multiple other caregiving duties. 

Videos are a great way to view “how to” perform tasks safely and, at your own pace. AARP has caregiver videos covering everything from wound and skincare to medication management and transfers.

The Family Caregiver Alliance also has hands-on videos on its own YouTube video channel. They cover a wide range of topics including incontinence care, family relationships, pain assessment, and many others. 

Training for family caregivers by healthcare providers isn’t feasible or practical in today’s busy healthcare environment. Expect to see more videos as time goes by to address this growing need.

8. In-Person Groups

Some people prefer in-person groups, but those are becoming more and more difficult to manage with other external factors at play like a pandemic. Other challenges include the time involved in getting to a group and making sure there is respite available for your family member while you are gone. Many of these in-person groups have moved online. However, when available, they can be very helpful for people who prefer a meeting with other people.

Eldercare Locator is the best place to look for support services in your area. If you are caregiving for someone who is not an elder, do a search related to the specific conditions of the person you are caring for. You may be caring for someone with cerebral palsy, multiple sclerosis, intellectual disabilities, or Parkinson’s disease.

9. Consider Psychotherapy

While psychotherapy is not a group, it can be a significant support for a caregiver. There are no specific numbers about the prevalence of depression and anxiety for caregivers but going to a therapist can be valuable no matter what. If you aren’t sleeping or eating well and don’t feel life is worth living, consider reaching out to talk with someone. Get a recommendation from your doctor or someone you trust.

You may choose a combination of psychotherapy and caregiver support groups. Remember, depression and anxiety are medical conditions that can be treated and may be difficult to manage on your own.

10. Self Care is Support for Your Family

For many caregivers, self-care is considered a luxury, but without a foundation of health and emotional stability, it can be doubly hard to be a good caregiver.

It is easy to slip into a mindset of “I know what is best,” but reaching out for support can be part of your self-care routine. Moreover, when you are helping others, you will feel better about yourself.

The Journey of Caregiving and the Value of Support Groups

Support groups for caregivers can give you perspectives and information that would be hard to get otherwise. Asking for help is a sign of strength and helping others can buoy your spirits.  Reaching out to a community of caregivers can help you begin a journey of hope and faith.


Sources

  1. “Welcome to the AARP Caregiving Community.” AARP. community.aarp.org/t5/Caregiving/Welcome-to-the-AARP-Caregiving-Community/m-p/1786782#M3126
  2. “25 Organizations that Take Care of Caregivers.” American Society on Aging. www.asaging.org/blog/25-organizations-take-care-caregivers
  3. “Family Caregiving How-to Videos.” AARP Public Policy Institute/Initiatives. www.aarp.org/ppi/initiatives/home-alone-alliance.html
  4. “Family Caregiving Alliance Videos.” Family Caregiving Alliance. www.caregiver.org/fca-videos
  5. “Eldercare Locator.” U.S. Administration on Aging. eldercare.acl.gov/Public/index.aspx 

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