Building support groups for people with early stage dementia is the focus of our new training program, Creating Connection. In the 10 years since we first introduced training for people to become Certified To Whom I May Concern® Facilitators, we’ve learned a lot about guiding support groups. The concept of a Sharing Group—a group of people living with early stage dementia who share stories about their lived experience—emerged from a support group. So, in a way adding a training program for support group facilitators is a return to our roots. Here’s why.
The Evolution of To Whom I May Concern®
For almost 20 years, To Whom I May Concern® has been a platform for listening to people aware of their cognitive changes related to diagnoses of dementia, like Alzheimer’s disease, Frontal Temporal Dementia and Vascular Dementia. To this day, these incredible individuals share their stories of life after the diagnosis and then take to the stage to educate loved ones and the community. Every performance ends in a standing ovation.
To Whom I May Concern® is unique in its use of theater to educate the public about dementia. Moreover, To Whom I May Concern® refocuses the story of dementia on the early days, where there’s hope and a future, rather than on the end stage.
“To Whom I May Concern® really helped my confidence, it helped me explain what was going on in my mind to my family, it gave them, my family, an insight I could never have achieved on my own.”
About 10 years into the evolution of our program, we began to train facilitators who bring To Whom I May Concern to communities beyond our base. Now, audiences across the USA, Canada and Australia have experienced To Whom I May Concern® performances. After more than 60 performances, hope is spreading. We know this from audience feedback; hearts and minds are changed by listening to people living with dementia.
Yet, with every performance, we learn something new.
The Key to Success: Support Groups for People with Early Stage Dementia
And here is our newest learning: the facilitators who were most successful in forming Sharing Groups and working towards a public performance are those who evolved from existing support groups or programs for people living with early stage dementia.
“Through the support group, I joined To Whom I May Concern®. Via the Internet, I connected to four other people from different cities, all living with some type of dementia. I could stay at home and become involved at the same time. This seemed perfect for me.”
Why is this? We have identified a few reasons:
- To Whom I May Concern® has the greatest potential for impact in communities where dementia remains a taboo topic. Yet, in these communities, asking people aware of cognitive changes to talk openly about their experiences is challenging, to say the least.
- Sharing personal stories in a group setting requires trust between the group members, and between group members and the group facilitator.
- Groups that have been meeting for weeks or months and sharing their stories with each other are often more ready to make the leap to advocacy, wishing that others could hear what they hear.
When To Whom I May Concern® came together naturally, a group of people in the early stage of their illness had been meeting for weeks, months or years, usually as a support group for early stage dementia. Some support groups met in person, others met online. What they had in common was that they wanted people outside of their meeting space to hear their stories!
In other settings where To Whom I May Concern® was easier to introduce, it was added to an existing roster of programs for people living with early stage dementia. These programs enabled people to build relationships through a common experience, making the leap to To Whom I May Concern® less of a challenge.
In both cases, people had taken that first step: moving from isolation to coming together. They had spoken openly about dementia between themselves and with group facilitators. Trust had developed. Most were ready to put their stories together and share them with family and friends and neighbors.
Here’s what we learned:
- People need to get comfortable sharing their diagnosis first with peers in a small group format before sharing with others in the To Whom I May Concern® performance format. We need to allow time for the support group to grow and evolve into a Sharing Group.
- Trust needs time to develop. When the group facilitator joins the support group in becoming a Sharing Group, the trust is already there.
- To Whom I May Concern® provides an outlet for groups that wish to move into advocacy to educate others about the experience of dementia.
Creating Connections: Training Facilitators for Support Groups of People with Early Stage Dementia
What we are left with is this: more help is needed to create support groups for early stage dementia. From these groups, To Whom I May Concern® programs can grow and expand to more communities, especially in communities outside of the big cities.
Thus, we are introducing our new training course—Creating Connections—for people to learn the skills and tools to organize and facilitate support groups for people living with early stage dementia.
The course is being offered for the first time this May. Included in the fee are four hours of “live” training over Zoom, a workbook, plus coaching as you start working with your support group. Two dates are available:
- May 20 & 21, 20205 – 6-8 pm ET OR
- May 28, 2025 – 11 am – 3 pm ET
Click here to learn more about the course and register.
Perhaps you are a community member who fills a void by offering support to people living with dementia and care partners where none exists. Perhaps you work for an organization or a retirement community that wants to make it easier for people to talk openly about dementia. Or perhaps you want to introduce To Whom I May Concern® but aren’t sure where to begin. Regardless, your starting point is with Creating Connections.
The prerequisite for Creating Connections: a heart for people
who are isolated and silenced by dementia. Is this YOU?
