Embracing Person-Centered Dementia Values: The Dementia Action Alliance

By Deborah Shouse, writer, speaker, editor, and dementia advocate.

One by one, we say hello via video conferencing, writers, artists, and arts advocates from all over the country. One sculptor enriches the visual aspects of our meeting by strolling through a museum, giving us occasional glimpses of vibrant art. We meet another artist’s dog. Via video, we see each other’s offices and learn each other’s names and goals. Some of the participants are living with dementia; some are not. All of us are brainstorming ways to use the arts as a catalyst to connect people. Already it is working; through the Dementia Action Alliance, our arts group is already engaging in deep and honest conversation, discussing ways to weave creativity and the arts through June’s conference in Atlanta, and exploring ways we can help others stay connected through the arts.

I have long admired the Dementia Action Alliance and feel honored to be part of their creative process. Their “Person-Centered Dementia Values and Principles” were inspired by the Pioneer Network and have been customized by people living with dementia. Karen Love, Executive Director of DAA, tells us, “Because people who have dementia are the experts, the Values are written from their perspective in first person narrative. This orientation helps us focus on what is important.”

Here are some of their core ideas:

Person-Centered Dementia Values and Principles

• I am a person living with dementia. Spend time getting to know me and relating to me as a person with a unique background, life history, interests and capabilities.

• Help me stay connected to what is important to me. Although aspects of my personhood may become increasingly hidden, I am still here.

• A reciprocal relationship is important to me. Autonomy, choices, dignity, privacy, self-determination are fundamental to my well-being.

• Support my holistic emotional, social, physical, cultural, sexual, and spiritual dimensions.

• Promote my personal growth and development. Help me continue to experience purpose, meaning, relationships and enjoyment in my daily life.

• Partner with me, utilize my strengths, and provide the right amount of support and opportunities I need to achieve my goals.

• Some dementia symptoms may interfere with my communication. I communicate the best I can; assume positive intent. Attempt to understand my needs and my reality. Please be compassionate.

For me, reading these principles reminds me how much we are all alike.

For more information on this topic and to learn about the DAA’s upcoming conference:

Conference: Re-Imagine Life with Dementia

You’ll enjoy reading this white paper on Living with Dementia: Changing the Status Quo, DAA

About the Author: Deborah Shouse is a writer, speaker, editor, and dementia advocate. Deborah’s newest book, Connecting in the Land of Dementia: Creative Activities to Explore Together, features dozens of experts in the field of creativity and dementia. These innovators share ideas that engage the creative spirit so care partners and people living with dementia can continue to experience meaningful moments of connecting. For more information and ideas, please visit DementiaJourney.org or DementiaJourney on Facebook.