Here’s something you don’t hear often: One hundred and fifty people listened for an hour to four people living with early-stage cognitive loss as they told their stories of getting and sharing the diagnosis, adapting to life with dementia, reactions of those close to them, and hopes for the future. To Whom I May Concern® aims to make these opportunities to listen and learn—like the recent event at CaringKind in New York City—more frequent.
To Whom I May Concern is an interactive theatre program that provides the structure and framework for people living with dementia to share their stories, first within the group and then with captive audiences in a readers’ theatre-style performance. (Listen here to a participant talk about the format.) On April 18, 2023, a To Whom I May Concern “Sharing Group” of four individuals living with dementia, or “cognitive loss” as they preferred to say, shared their stories in a live performance before family, friends, care partners, people living with dementia, professionals and the public.
CaringKind is a New York-based organization that supports individuals and families affected by Alzheimer’s disease and other forms of dementia. In November of last year, six staff completed the To Whom I May Concern facilitator training in readiness for offering To Whom I May Concern as part of their Early-Stage Program. The plan was to encourage members of the Cognitive Stimulation Therapy (CST) group–who had bonded through eight weeks of the CST program–to join CaringKind’s first cohort of a To Whom I May Concern Sharing Group.
Indeed, four CST participants—Lenore Migdal, Stephan Lynn, Robert Sanborn and Patricia Magee Jaksha—took up the challenge and joined CaringKind’s first To Whom I May Concern program. During weekly get-togethers guided by facilitators Anne Kenny, Greg Purnhagen and Stephani Shivers, the group felt comfortable speaking openly about their experience of living with cognitive loss. As with other Sharing Groups over the years, group members began to feel they were not alone. They appreciated the support from peers going through the same trials and tribulations as they shared coping strategies and other information relevant to their experience.
Anne, Greg and Stephani took careful notes of the Sharing Group’s stories, striving to copy their exact words as best they could. They wrote the stories into letters addressed “To Whom I May Concern”—the person or people who need to hear the letter. Using the To Whom I May Concern script template, which ensures the script follows a tried-and-true format that engages audience members and encourages them to really listen, the facilitators compiled the letters into a script for a 40-minute performance.
A foundational principle of To Whom I May Concern is that Sharing Group members own the script—the wording of the script and how it is shared. The group agreed to share it publicly, and on April 18, approximately 150 audience members gathered at CaringKind for the To Whom I May Concern performance.
Before the performance began, audience members were asked to each write three words that they felt described the experience of living with dementia; blank index cards and pens were provided. They set their cards aside as the Sharing Group began their performance.
Over the next 30 minutes, the “cast” shared many stories, all in the form of letters. Stephan, who had been an emergency room doctor in his professional life, addressed his letter to his own doctor. He related how he had ordered his own evaluation for dementia. The doctor who shared the results hesitated, wanting to avoid giving bad news. Stephan told him to “give him the truth” as he had ordered the evaluation himself! In Stephan’s words: “It’s my truth and my reality. I deserve a clear diagnosis.”
Pat shared how her husband was reluctant to confront the reality of her cognitive decline. Pat talked about the difficult but necessary step of confronting her husband with her need to get help.
Robert had previously owned a small company that built non-profit housing. When his team completed a project, they would gather and celebrate. Robert shared his diagnosis with his team, only to later discover that they had stopped inviting him to the celebrations and removed his name from building drawings used at presentations. As Robert said, “You erased me.”
Lenore talked about the importance of her garden to her well-being; even in Manhattan, she is able to garden on her terrace, a welcome respite!
Sharing group members also talked about objects or people that helped them get through each day. Lenore, a psychologist, continues to use the same calendar that she had used to organize her appointments with patients. Stephan shared a photo of his wife, while Robert held up a pack of Post-it notes! Everyone talked about the importance of support from their families.
To close out the performance, Pat led the audience in a rousing rendition of “Happy Trails!”, which had been sung every Friday by students and staff at the Arizona school where she had taught. The song was a fitting ending to the performance and an introduction to what came next.
An important element of every To Whom I May Concern performance is the supported storytelling. Sitting behind the performers at the front of the room, the facilitators were ready to coach and prompt performers, and to fix any microphone issues!
After the performance, audience members were invited to repeat the three-word exercise: what three words describe the experience of living with dementia? Writing their second set of three words on the reverse side of the index card, audience members were surprised to find how much their perception of dementia had changed as a result of hearing the stories of people living with cognitive loss, with the words recorded after the performance much more positive.
This exercise kicked off the Talk Back, where audience members dialogued with Sharing Group members. One audience member, a retired geriatrician, commented that before hearing the cast speak, she thought she knew everything about dementia; now she knew how much she didn’t know. The Talk Back was also a chance for Sharing Group members to clarify to the audience the To Whom I May Concern process which they had just experienced, reinforcing that the stories were their own and compiled by the facilitators into a script.
Once the Sharing Group has decompressed from April’s successful performance, they may decide to repeat their performance before a new audience. Perhaps inspired by the experience of a Sharing Group in Australia, they will find an off-Broadway venue where they can continue to demonstrate that they are “more than our memory, more than our illness.” Closing out the performance, Robert inspired everyone there to take action: “I’m ready to be an advocate, an activist, not just for me, but for people in the future. Will you join me?”