Voices that are lost/silenced through the shame or embarrassment of dementia become strong and clear when shared with people that understand. Stories of determination, fear, anger and frustration are told with humor and love. These are the words that become the script of each unique performance.
To Whom I May Concern begins with an invitation. I contact Early Stage AD Support Groups and ask if they would like to share their experience with those beyond the walls of their support group meeting room. There is a wealth of experiences within those walls that teach us about dementia beyond the signs and symptoms. I invite the group to teach us.
The volunteer participants form a focus group that shares the stories of living with dementia. The question “What is like to live with dementia?” is posed again and again. I audiotape the meetings and review them for themes with stories that support the themes. Past groups have told stories of the diagnostic process, impact on self perception, the reactions of friends and families, coping strategies, hopes and concerns.
From the focus group transcripts I create a script which captures the stories they have shared. I then bring the script to the group for validation. There is never one draft! Rewrites are done until the group feels a sense of ownership of the script. Each script is unique because it reflects the people in the group though the script always follows a letter format.
Volunteers are recruited from the group to be the readers on stage. Being public about one’s diagnosis can be an issue for volunteers and is always discussed thoroughly. Four or five readers are usually enough. The whole group is invited on stage at the end of the performance to be part of the Talk Back session.
