' ... spouses have shared pride in the courage displayed by their loved ones.  Professionals have been brought to tears as they acknowledge their deeper understanding about what the person with dementia experiences ... '

This great project from US enables groups of people with dementia to share experiences -  then to perform them to audiences - and subsequently to create dialogical spaces.

http://towhomimayconcern.org/the-project

 

http://towhomimayconcern.org/about/video

 

www.youtube.com/watch?feature=player_embedded&v=qR1ds3JSU0Q#!

 

SHARING

 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.

 

The Invitation

 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.

Focus Group

 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

 

PERFORMING

Staging the experiences of person with dementia focuses attention on the drama of living with the knowledge “that I have a brain disease that isn’t going to get better.”  (Performance in Manhatten, 2006)

 

Rehearsal

 The script is written as a series of letters which reduces the anxiety of the performers.  Rehearsing the script several times in front of the other group members is helpful as well as on the stage where the performance will occur.

The set is simple.  No props are needed though one group used desks to highlight the letter writing theme and another group decided to wear something purple for Alzheimer’s.

On Stage

Performances have occurred in churches, senior centers, and public auditoriums.  Any place will work as long as the sound system is good and there is room for an audience of care partners, families, friends, peers, and professionals.  The mailing list should answer the question “Who needs to understand the personal experience of living with dementia?”

When the stage is set and the curtain goes up (symbolically), the focus is on the person with dementia.  This is their moment to speak.  Every audience to date has been moved deeply.  They have never had the experience of listening to a person with dementia.

 

DIALOGUE

 With the spotlight on the person with dementia, the audience listens to stories that express the “feeling” side of living with memory loss and confusion.  The honesty of the actors invites understanding, laughter, and most importantly, conversation.  The space between the stage and the audience shrinks and the applause feels like an embrace.

 

Talk-Back Session

This is the unscripted part of the performance and sometimes goes longer than the actual performance which takes about 35-40 minutes. The performers and focus group members who have now joined them on stage have been empowered by the performance and quickly put the audience at ease to ask questions.

In past dialogue sessions spouses have shared pride in the courage displayed by their loved ones.  Professionals have been brought to tears as they acknowledge their deeper understanding about what the person with dementia experiences.  And peers with the same diagnosis, thank the performers for telling their stories which mirror their own in a way that makes them look intelligent.

 

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