Why We Started the Toolkit Project

Through a generous grant from the Rush Woman's Board of Rush University Medical Center, the Toolkit Project was developed for you, the Dementia Support Group Facilitator.  Being the facilitator of a support group, either for people with dementia or their caregivers, is both rewarding and a challenging task. Facilitators often come from a variety of occupational backgrounds and experiences. If you are new to running a group or have been doing it for many years, we all need support. 

The Toolkit Project shares the experience and success of Without Warning® , a support  program of the Rush Alzheimer’s Disease Center for those living with younger onset Alzheimer’s disease. Although Without Warning is only for families living with Alzheimer’s disease at a young age, the lessons learned from this group will help facilitators of any dementia support group.

Throughout these pages, you will find information about facilitator skills, common themes expressed by people living with dementia and their family members, topics for encouraging discussions and resources to support your group.

We also have a password protected forum for Support Group Facilitators, where they can exchange ideas, discuss issues, and network with each other.

In developing the Toolkit Project, we wanted to hear from other group facilitators to understand their experiences.  More than, 30 people who run dementia support groups were surveyed, and here are some of their thoughts and concerns.

Greatest Challenges for Dementia Support Group Facilitators

(in order of response)

1. Maintaining attendance
2. Generating ideas for encouraging group discussion
3. Handling challenging participants
4. Developing facilitator skills
5. Handling group dynamics
6. Knowing when and if someone should be discharged from the group.
7. Handling different needs from group members

Comments on Challenges

"Having done it every month for over 10 years it is hard sometimes to keep going... Then I have a great meeting and realize it is all worth it!"

"Getting people to attend...seeing people who needed the support but who could not admit they needed help."

"The typical facial expressions that we use to read an audience are often not there. It's hard to tell whether a person is enjoying the program because their face isn't displaying a positive message in the form of a nod or a smile."

"Managing people who monopolize the group or who are inappropriate. Sometimes, launching the conversation can be difficult."

What Would be Helpful in Your Role as a Facilitator

(in order of response)

1. Ability to network with other facilitators 
2. Ways to develop facilitator skills
3. Ideas for discussion questions and ideas for topics
4. Ideas for structuring a group
5. Ideas for handling difficult emotions

It was from these comments that work on the Toolkit Project began. It is our hope that this website addresses these needs and becomes a resource for those of us who are providing support to people and families living with dementia.