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Week of December 7 - December 13, 2008

People with Alzheimer's are still playing, living, composing as we go along.

Yitzhak Pearlman, a master violinist, once broke a string on his violin while performing one of his own compositions in Carnegie Hall. Without missing a beat, he composed and played a new melody with his violin that was missing one string.

I guess you could say people living with dementia have a broken string. We are still playing, living, composing as we go along. Most folk's strings stretch with age, mine are breaking. Few can understand or appreciate my melody, except for other performers who also have a broken string or two. I am trying to play as close as I can to the original melody, but I now need your help to play on your instrument my missing notes/sounds. If we still want to be committed to staying and playing together we are both going to have to learn how to play our instruments different from how we learned when we were children.

My need to make music hasn't diminished simply because I broke one of my strings. My need to harmonize with you hasn't changed simply because I can't plan like I formerly did. Let us play together. Let us sing together!

The above story originates with the Canadian MAREP folks. It's a metaphor for how they have learned the best way to support someone with a changing melody is first to listen to them. It is to involve them in the rewriting of their own compositions. It is to follow their leads in practice sessions. They, people living with dementia, are in the best position to know how to create their songs. The function of people who don't have dementia is to be the back-up band. Together all will make better music than any one of them alone.

For Caregivers:

Try relating to me as your best friend. Listen to me, hear me out, do not try to change me into someone I was or you want me to be. I am in need of a best friend. You know many of us claimed this best friend relationships was true in our wedding vows, and maybe even when we renewed them after 20, or 30, or 50 years. Well now, I hope it is still true. And heaven knows we both need a best friend to make it through each and every night.

For Professionals:

Please practice and model relating to me as a whole human being, whose cognitive abilities are unevenly declining. I still have some things to say, I still have the right to say some things, especially some things when it comes to how I am treated, what I wear, when I get up, what I swallow, where I live. I especially need the professional insight, skills, and experience touted by the many degrees posted in your offices.

I need you to be my advocate, my enabler, my reabler, my teacher, my cheerleader. I need you to help me and my caregivers create work-arounds for the symptoms that come with declining cogitative abilities. I need you to educate, to demystify, destigmatize the label branded on my head. Do this for me, my family, my friends, other professionals, politicians, and the World. Hold my fearful feet to the dementia bonfire. Help me use the energy from my fears to motivate me to action; to change; to address the realities; the family dynamics that is the fire that comes from the words you have dementia probably this or that type.

To accomplish these hopes of mine, and after spending time with hundreds and hundreds of people living with and in the various forms of dementia, I am confident these are also some of their hopes, we need you to host, or organize, to support your own changing melodies forums. We need you to build upon what has already been done (the changing melody toolkit), promote, and live by the principles of a changing melody forum.

Please, for my sake. For the sake of my family, for the sake of others walking down this road less traveled, for your sake: we all need to change our melodies to produce a more harmonious life as we all confront in our own ways the consequences of the words "you have dementia, probably of this or that type."

Richard

TO ORDER A COPY OF THE TOOLKIT:

Creating Partnerships in Dementia Care: A Changing Melody Toolkit is available from the University of Waterloo's Murray Alzheimer Research and Education Program.

ARTICLES BY RICHARD TAYLOR ON THIS SITE:

Richard Taylor's Helpbox

Solid Advice: Say "Hello" to Each Day

The Alzheimer's Stamp: Return to Sender

Emphasize Real People Over Hit-and-Miss Research

MORE INFORMATION:

Richard Taylor has lived for seven years with a diagnosis of dementia probably of the Alzheimer's type. A former psychologist, he is now a champion for individuals with early-stage and early-onset Alzheimer's disease.

BY:

Richard Taylor, Ph.D.

SOURCE:

richardtaylorphd.com

COPYRIGHT:

© 2008 RichardTaylorPhD.com . All Rights Reserved.