This group is a structured gathering of caregivers, family and friends of persons with dementia who meet to discuss issues related to Alzheimer’s disease and related disorders.
The purpose of a support group is to provide an opportunity for family members and caregivers to meet and develop a mutual support system that will help maintain the health and well being of the members. People come to support groups looking for something. They typically talk about looking for people who “really understand because they’ve been there, too”.
The group provides an opportunity for members to:
- Exchange practical information on caregiving problems and possible solutions.
- Share different ways of adapting to the continuing stress of coping.
- Share feelings, needs and concerns in a confidential, safe, supportive, non-threatening and non-judgmental atmosphere.
- Express and work through feelings associated with caregiving (e.g., fear, frustration, worry, guilt, anger, and other emotions) with others who have experienced similar feelings.
- Assist family members in developing realistic expectations of themselves and their cognitively impaired loved ones and understanding the impact of the disease on dynamics.
- Provide social contact for family members who feel isolated because of their continuing care of their loved one.
- Establish sympathetic connections between families dealing with similar experiences so they can call on each other between meetings when things are difficult or isolating.
- Emphasize the importance of maintaining physical and mental health of the caregiver through use of respite, continued involvement or re-involvement in family life, work, community, and social and recreational activities.
- Familiarize people with resources within the association and the community.
- Help families learn how to appropriately advocate on behalf of residents in facilities.
- Receive current and accurate information on aspects of Alzheimer’s, recent advances in research and public policy issues.
Alzheimer’s Association Support Groups
The establishment and maintenance of peer-based family support groups is a priority of the Alzheimer’s Association. To this end, the chapters choose caregiver support group facilitators carefully. The chapter provides training, guidance and materials to the facilitators, seeking to enhance their communication skills, as well as their knowledge of resources, to serve and assist families in need.
All facilitators are considered volunteers of the Association and are expected to be screened and trained through the volunteer department, including getting a criminal background check and signing the appropriate conflict of interest agreements.
When entering into this relationship, the chapter staff and the facilitator sign a “Support Group Facilitator Agreement,” which formalizes the expectations for the roles and responsibilities of the chapter and each of its affiliated support group facilitators.
When a facilitator breaches the agreement as outlined by the chapter or chooses to stop facilitating the group, a process to end that role with the Association is begun. This process may be begun by either the facilitator or by the chapter. Regardless of the reason for ending the role with the Association, chapter staff will assist in formally terminating the “Support Group Facilitator Agreement”
The contact information for group members, materials, resources, etc. are the property of the Association. In some cases, a group may need to be terminated or its members transitioned to another group. This may be due to lack of attendance, lack of appropriate facilitators, disagreement with the group operations or violation of affiliation agreement.
Support Groups do not pay fees to the chapter for affiliation. They do not have separate bank accounts, officers or directors. Any donations offered during a meeting are directed to the Alzheimer’s Association Chapter through its development department.
What Makes a Good Facilitator?
Support group facilitation involves helping the group perform at its best, allowing the group members to benefit from each other’s wisdom. The facilitators’ personal ideas, beliefs or needs take a back seat to the needs of the group.
This is not always easy to accomplish! When facilitating a group, both former care partners and professional caregivers are often tempted to bring what they “know” to be true to the table. Performing at your best as a facilitator means that self-restraint is often called on for the good of the group, and the group’s needs come first. Remember that you are not in the group to function as an expert or to achieve a particular outcome. You are there solely as a person who helps allow the group process to take its course.
A good support group facilitator is:
- Emotionally present and able to listen and really hear what others are saying through words, body language and feelings.
- Able to communicate, facilitate, articulate and summarize ideas and feelings, as well as encourage others do the same.
- Genuine and not afraid to show true feelings and thoughts.
- Non-judgmental and tries to understand another person’s experience from the person’s point of view.
- Able to use humor and to lighten tension.
- Caring and compassionate, and able to show by words and body language that he/she understands, acknowledge and cares about the feelings of the caregiver.
- Able to give encouragement and recognize accomplishment s.
- Open to feedback and willing to grow and learn new ways of doing things.
- Able to facilitate instead of “teach” and willing to help others learn from each other rather than provide all the answers and teach the “right” way of doing things.
- Knowledgeable about dementia and current research developments.
- Informative when appropriate but resists the urge to lecture.
- A loud and clear speaker.
- Fluent in the same language as the participants (e.g., bilingual groups)
- Understanding of the cultural values and beliefs of the group participants.
- Open minded about other personalities, views and experiences.
- Aware of community resources that could be helpful to persons with the disease and their families and willing to refer group participants to the chapter for information and resources.
- Able to create a safe atmosphere.
- Committed to confidentiality, and lets everyone know that what is said will remain confidential in each meeting.
One of the most important components of an effective support group is confidentiality. This means that what is shared in the support group meeting is confidential, and should not be shared with others outside of the group meeting. In addition, the names and contact information for the meeting participants belong to the Alzheimer’s Association, and should never be shared with others outside of the group.
The ability of the group members to feel safe enough to express themselves hinges on maintaining confidentiality, and a primary piece of the facilitator’s role is to protect and enhance confidentiality within the group.
Everyone in this group is free to share as much or as little as they would like. Please Remember that anything shared in the group is confidential, with the exception of a dangerous or abusive situation, when the facilitators will inform the appropriate individuals/organizations in order to ensure safety.
The Alzheimer’s Association provides numerous resources for use by your group members, and you as a group facilitator need to be well-acquainted with these programs and services. By understanding what is available, you can link your group members with the resources they need to minimize their stress and maximize the care and support they provide to the people in their lives living with dementia.
The Alzheimer’s Association 24/7 Helpline
The Alzheimer’s Association 24/7 Helpline provides reliable information and support to all those who need assistance. Call toll-free anytime, day or night, at 1-800-272-3900
The 24/7 Helpline serves people with memory loss, caregivers, healthcare professionals, and the public.