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Creating the Framework

Work needs to be done before starting your support group. Here are several items to consider. These will help to give guidance and direction to your program. The size of your program might dictate which of these items you initiate first. A smaller group might not need an advisory council but instead might find other ways to include the voice and opinion of group members. Even though we did not have all these elements when we started the Without Warning program, they were each added over time. We have found that they are helpful to have when a question or problem arises.

Needs Assessment 

For the Without Warning support group, we sent out a needs assessment questionnaire to everyone with younger onset Alzheimer's disease who had been seen in our clinic during the past year. It asked what they felt would be helpful to them, when they were available and what types of groups they would like. Finding out what they wanted in a support program greatly changed what we were planning.

Task Force

When starting a new group, it can be helpful to find out from possible participants what information interests them. What are their needs? Goals?

Creating a task force is beneficial when starting a support group. Simply defined, a task force is a small group of individuals with diverse backgrounds who are brought together to accomplish a specific goal or produce a product, in this case an effective support system for individual's who have been diagnosed with Alzheimer's disease and their loved ones. Initially, the task force will focus on developing a plan of action (i.e., discussing the types of group desired and how each session should run) and possibly assisting with creating a possible budget if needed, especially if the group will be renting space and/or providing refreshments.

Advisory Council

As you develop your group, it may be helpful to create an advisory council. Like the task force, the advisory council upholds the initial ideas and goals of the support group. For Without Warning, we hold two advisory council meetings, one group for the individuals who have been diagnosed with Alzheimer's disease and another for their loved ones. It is important to receive feedback on the development of the group as well as hear new ideas that the participants may want to implement.   

For our members with Alzheimer's disease, they attend as able and meet for 20 minutes before our monthly meeting begins. Family members are assigned a three-year term but with the understanding that life situations could change the ability to participate. The option to call into the meeting is offered in case that helps with participation. 

Types of Groups

There are many different types of support groups. You could lean toward one but add other elements when appropriate.

Time Limited
With this group structure, the group has an end date. For example, 6 months.
This group does not have an end date and continues within the designated time frame (i.e., last Friday of every month).
For the purpose of the support group, there may be times where a guest speaker or an expert is considered fully or appropriate. There may be questions that you as a facilitator cannot answer accurately. That is to be expected as the understanding of Alzheimer's disease is always evolving. In that situation, it is appropriate to invite a guest speaker in to speak to the group.
Structured groups follow a constant pattern or agenda at each group meeting.
This type of group is led by a group participant instead of a facilitator.
Limited to Certain People or Types of Experiences 
This type of group is developed for certain groups of people or types of experiences. An example would be a group for caregivers of people with dementia instead of a general caregiver group
Social, Cognitive, and/or Physical
These types of groups are developed to include various components. It looks at emotional well-being but through social, cognitive and physical activities.

Mission Statement

Once you know what type of group you are planning to offer and who will be your participants, you can develop a mission statement. A mission statement is helpful in giving you as the facilitator direction. It is also helpful if you have a participant question anything with the group.

By is the Mission Statement for Without Warning

Inspired by someone with younger-onset Alzheimer’s disease, Without Warning was started by the Rush Alzheimer’s Disease Center in April 2004 to support and empower individuals and their families who face Alzheimer’s disease early in life. Directed by an Advisory Council, of both people with Alzheimer’s disease and their family members, Without Warning’s specifically tailored programs offer opportunities for education, support, and community.  With the knowledge that others are on this same journey, we hope individuals and their family members find purpose, dignity, and the opportunity to live each day with meaning and grace.

Pre-Admission Assessment and/or Discharge Criteria

Depending on the type of group you are offering, you might need to establish a pre-admission assessment and/or a discharge criteria. For Without Warning, we confirm that the person was younger than 65 when symptoms started. We also have to consider if there is ever a point when we need to discharge someone from the group. For us, since we offer the group to people with Alzheimer's, we might have to discharge someone if their care needs become too great. When care needs become too great for the Without Warning program, some families have opted to have a caregiver stay with their person during the group. This is available to our program because we offer a music therapy group that is able to support people who are farther into the disease process. 

Even with a group that is strictly for family members, we recommend a pre-admission assessment and discharge criteria. They are helpful to have in place when questions or problems arise. 

Group Guidelines

Group Guidelines provide structure as to how people should act when they are at the group. For Without Waning, our advisory councils developed the guidelines (they have been invaluable in keeping our focus). 

Guidelines for Without Warning

  • There is no one way to address all the needs of the person with Alzheimer's or the caregiver. As it's been said many times, once you meet one person with Alzheimer's, you have met one person with Alzheimer's.
  • The program should be directed by the participants through advisory councils and regular surveys.
  • The program should be free of charge and, when possible, support the entire family.
  • There should be a continuum of resources given to the caregiver or the person with Alzheimer's to support their journey.
  • Let the person with Alzheimer's or the caregiver share their story with others. It helps them and the audience.
  • Always allow the person with Alzheimer's or the caregiver to express themselves without judgment.
  • Provide opportunities for socialization for the person with Alzheimer's and the caregiver. This is especially important since this is such an isolating disease.

Ground Rules

In Without Warning, we have utilized specific ground rules for our group meetings. As a group facilitator, there might be times when you need to talk to a person or the group about ways to act when together. Having ground rules in place are helpful for these moments.

  • We each share the responsibility for making this group work.
  • Confidentiality is essential and should be maintained by each person. What is said in the group is not to be repeated or discussed at any other time or place.
  • We are here to share our feelings and experiences; we try not to give advice unless someone asks.
  • We try to accept people, just as they are, and we avoid making judgments.
  • We try to give everyone an opportunity to share. Please be mindful of the number of people in group who might want to express their feelings.
  • We have the right to speak and the right to remain silent. We have the right to ask questions and the right to refuse to answer.
  • We give supportive attention to the person who is speaking and avoid side conversations and interruptions.
  • We realize that it is important to spend some time each meeting talking about how to care for ourselves.
  • Although we might know others with Alzheimer’s disease, we keep our conversation to the experience of those living with younger onset.
  • We do not discuss group members who are not present.
  • We begin and end our meetings on time.

These ground rules were revised from Peer Support Group Facilitator Training – Student Manual, by Sharon Mahre. Copyright © 1988