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Dementia Care Coaching

To Whom I May Concern

Published April 14, 2009 2:10 PM by Kelly Papa

When I first saw the title "To Whom I May Concern" I thought that there was a typo. I was curious why they would have missed such an important edit, isn't the phrase usually "to whom it may concern?" I soon learned that they had not made a mistake.

On March 31, 2009 the Connecticut Chapter of the Alzheimer's Association had their 12th annual dementia conference.  It was a wonderful day that united over 700 family members, people with dementia and professional caregivers. The day was filled with a variety of educational seminars including current research on Alzheimer's disease, ways to enhance dining for people with dementia, creative ideas for activities, and other valuable educational topics. I hope every attendee was able to take information to share with those closest to them.  I know I did! 

I was most moved by the last session I attended, it was titled "To Whom I May Concern", presented by Maureen Mathews RN, PhD.  She shared her experience of developing an interactive theater program for people living with early stages of dementia.  Ms. Mathews described how she works with small groups of people to write "letters" to their caregivers about how it feels to live with dementia. The participants then read the letters as a theatrical performance.  Ms. Mathews shared a video clip of a gentleman reading his letter to the audience.  It was so powerful to hear him describe how he felt about his forgetfulness, his worries, and his needs. We watched as he lost his place in his reading and was guided back by the other performers. 

She also read us a letter from a woman who described the pain she felt each time a professional caregiver said the words "Alzheimer's disease" without taking into consideration her feelings. "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."   (quote from http://www.towhomimayconcern.org/ )

Ms. Mathews purposefully shifted the title of her program from "it" to "I" to remind us to always focus on the person we are caring for and truly listen to what they need.  When we don't focus on the person we end up just looking at the tasks we need to accomplish. "To Whom I May Concern" is an innovative learning opportunities for dementia caregivers to reflect on how it must "feel" to have dementia.  Please take a look at the information on her web site http://www.towhomimayconcern.org/

posted by Kelly Papa
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1 comments

Kelly,

  I love how you entered the process with the "it"/"I" dilemma.  Is that a misprint?  Let me tell you what happened after the gentleman was helped to find his place in the script: he looked out at the audience and quickly put them at ease with the words "Well, I do have Alzheimer's disease, you know..."  Everyone laughed.  You could feel the distance between the stage and audience shrink.  A conversation was beginning.  To Whom I May Concern has had many moments like that!   Thanks for your interest and support!

Maureen Matthews, Early Memory Loss Program - Coordinator, Stamford Counseling Center April 25, 2009 10:14 AM
Stamford CT

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