Tips on Finding the Right Family Caregiver Support Group for Dementia
Last Updated: December 17, 2019
Finding a caregiver support group is an important aspect of self-care, especially for those caring for a parent or senior loved one with dementia. Recent studies have found that involvement in a family caregiver support group can benefit a caregiver’s mental and physical health, as well as their measure of success.
If you are caring for a person living with dementia, this discussion may give you some direction in your search for the right family support group.
Why Dementia and Alzheimer’s Support Groups Are Helpful
As the average life expectancy increases in the United States, the incidence of age-related diseases — such as dementia — continues to rise exponentially as well. In turn, the number of individuals caring for friends and family members in the U.S. has also increased.
Dr. Peter Steinglass, Executive Director of the Ackerman Institute for the Family in New York City, says, “Today, people are being asked to provide treatment at home that would have been unthinkable even three years ago. In addition, there is much greater awareness of the burdens facing family caregivers… and fortunately, the availability of family caregiver support groups has increased substantially.”
How Can Support Groups for Dementia and Alzheimer’s Help Caregivers?
When an individual is caring for friends or family members living with dementia, he or she will generally benefit from two levels of assistance. The first is support for the physical and emotional stress of the job. This may include ideas for self-care and tools for managing stress. When the caregiver has an established association with the patient, maybe a sibling, spouse or friend, complicated interpersonal relations can arise.1 This is the area where additional support is often needed.
Participating in a caregiving support group can allow you to air your feelings about these and other issues. Some of the benefits of group support include the following:
- Tools for coping with stress
- Safe, non-judgmental opportunity to talk about emotions
- Socialization with a community that understands
- Professional resources and referrals
- Opportunity to develop a support network outside group meetings
Support groups benefit not only the person giving the care but the patient as well.
How Can Support Groups for Dementia Aid Patients?
The stress of caring for a loved one living with Alzheimer’s disease or another form of dementia can contribute to health problems.2 The stress of burnout, depression or resentment can compromise the immune system. If you are noticing these symptoms, you may be unable to provide the loving care you might intend for your loved one. Group support is a healthy outlet for dissipating difficult emotions and receiving compassion from others who understand.
When caregivers feel supported and understood, they are more likely to:
- Prioritize their own self-care
- Experience a boost in energy and immune health
- Be more available to the patient
- Provide more attentive care to their loved one
- Feel energized by the opportunity to be of service
Caregiving doesn’t mean sacrificing your own health and well-being.3 A support group can help you learn ways to dissipate the stress and frustration that go with the job.
Types of Family Caregiver Support Groups
There are several different types of support groups available, including the following:
- Caregiver groups: These groups consist of friends or family who care for people of all ages, living with a wide range of symptoms or diseases. The focus is on caregiving in a general sense, instead of on a specific illness. Individuals who need community and social associations or need to talk about their own needs may find this type of group most helpful.
- Condition-specific groups: These groups focus on a specific condition, disease or disability, such as dementia. If the diagnosis is new to you and your family, and you are in need of more education and resources, you may want to consider this type of group.
- Family support groups: These groups may be more like group therapy than other types of support groups. The focus is on improving communication and strengthening family bonds for those impacted by a person who needs ongoing care. This is a good choice if you are struggling with conflict over specific tasks, monetary issues or emotional problems between family members.
- Online support groups: Attending online support groups from the convenience of the home is a good option for those living in remote areas and those struggling with a lack of time for self-care or transportation issues.
- Relationship-oriented groups: This type of group involves adult children, parents, spouses, etc. These groups may benefit individuals looking for support from others who relate to the specific challenges that family members experience with care recipients.
Every person is different, so we all have a different gauge for what makes a good support group.
Some groups employ professional counselors or trained facilitators, but in other cases, a very effective layperson may act as the group leader. The group facilitator should be able to:
- Employ and enforce the agreed-upon structure of the group
- Facilitate a primary goal for all members of the group
- Offer care and concern for each person in need
- Provide reliable resources matching what participants want to learn
- Respect each member’s opinion
Some people may prefer a more relaxed atmosphere and others, a structured group with guidelines for how long each person shares, etc. However, some basic qualities apply to all groups. A functional family caregiver support group should include:
- A caring environment offering trust among members
- A clear purpose of the group’s function and goals
- A good group facilitator
- A straight-forward policy on confidentiality
- Agreement among members about how the meeting will be conducted and the structure of the group
If you find a group that has most or all of these qualities, it is likely a well-designed group that could prove to be helpful.
Tips on Finding the Right Family Caregiver Support Group
You may find it will help to attend several different support groups to discover the one you feel most comfortable joining. Here are some questions to ask when beginning your search:
- What type of structure do these caregiving support groups have? Is it an open speaking forum? Is participation required of each group member? What are the rules of confidentiality? Is emotional support a component? What types of resources are available?
- Who is the group facilitator? If possible, talk to the group leader and ask questions about the group directly. You may also want to learn about the leader’s credentials and associations with community organizations, as well as his or her background and experience.
- Who sponsors the family support group? Reliable support group sponsors include local churches, hospitals and other well-established organizations, such as the Alzheimer’s Association.
If you don’t like the group the first time, try it at least one more time before deciding it’s not for you. New attendees oftentimes feel anxious when trying out an unfamiliar group and may not get much out of it the first time. Keep in mind that the most important thing to take away from any support group is the feeling that group members really care for each other. If there is mutual respect among the members, the differences usually work themselves out.
If finding the right group seems impossible, consider individual counseling. A professional may be able to recommend the perfect support group, based on getting to know you and your personal family caregiving situation.
Have you joined a family caregiver support group before? What did you learn? What suggestions do you have for others searching for a support group? We’d like to hear your tips in the comments below.
1University of California, San Francisco. (2019). Caregiver Well-Being. Retrieved from https://memory.ucsf.edu/caregiving-support/caregiver-well-being
2University of California, San Francisco. (2019). Caregiver Well-Being. Retrieved from https://memory.ucsf.edu/caregiving-support/caregiver-well-being
3University of California, San Francisco. (2019). Caregiver Well-Being. Retrieved from https://memory.ucsf.edu/caregiving-support/caregiver-well-being
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