About Us

About Us 2017-11-12T16:30:14+00:00

Who We Are

The Dementia Action Alliance USA is a non-profit national advocacy and education organization of people living with dementia, care partners, friends and dementia specialists committed to creating a better country in which to live with dementia.

We: educate about stigma and misperceptions; support well-being and a focus on the whole person rather than just their dementia symptoms; advocate for inclusion and accommodating dementia as a disability needing compensatory strategies for changing abilities; promote person- and relational-centered care practices; identify beneficial technologies; and connect and engage people as much more can be accomplished working together.

What We Do

Individuals and care partners are fully included.

NOTHING ABOUT US WITH US

In Their Voice: Values and Rights of Individuals with Dementia

BECAUSE

THEREFORE

I’m a person. I have thoughts, emotions, wishes, and needs.
When you label me a ‘patient,’ ‘victim,’ or ‘sufferer,’ I feel minimized.

Relate to me as you do to any other human being, just like yourself. My personhood may become increasingly hidden, but it’s never lost.

I have a unique background, life history, interests and capabilities.

Recognize that my personal goals, measures of success and interests may change over time.

I have holistic, emotional, social, physical, and spiritual dimensions, just as you do.

Help me stay connected to what is important to me in my family, home, community, and spirit.

I’m communicating the best I can in verbal and physical ways because I want and need my choices to be understood.

Communicate with me in new ways and learn to interpret my non-verbal behavior, so you can provide the support I need.

My autonomy, choices, self-determination, dignity, and privacy are fundamental to my well-being.

I may need and welcome your support, but please do not substitute your decisions for mine.

Choice has risks, normal in everyone’s life, so I may make mistakes or do something I regret.

Respect my decisions, even when they differ from yours, and help me learn from my mistakes.

I need to proceed at my own pace in order to feel satisfied, fulfilled, comfortable, and safe.

Place my needs before tasks, and realize that we need to work together.

Purpose, meaning, enjoyment, personal growth and relationships are important in my daily life.

Promote ways I can achieve my goals, make a difference, and relate to people every day.

Individuals and care partners are fully included.

NOTHING ABOUT US WITH US

In Their Voice: Values and Rights of Individuals with Dementia

BECAUSE

I’m a person. I have thoughts, emotions, wishes, and needs. When you label me a ‘patient,’ ‘victim,’ or ‘sufferer,’ I feel minimized.

THEREFORE

Relate to me as you do to any other human being, just like yourself. My personhood may become increasingly hidden, but it’s never lost.

BECAUSE

I have a unique background, life history, interests and capabilities.

THEREFORE

Recognize that my personal goals, measures of success and interests may change over time.

BECAUSE

I have holistic, emotional, social, physical, and spiritual dimensions, just as you do.

THEREFORE

Help me stay connected to what is important to me in my family, home, community, and spirit.

BECAUSE

I’m communicating the best I can in verbal and physical ways because I want and need my choices to be understood.

THEREFORE

Communicate with me in new ways and learn to interpret my non-verbal behavior, so you can provide the support I need.

BECAUSE

My autonomy, choices, self-determination, dignity, and privacy are fundamental to my well-being.

THEREFORE

I may need and welcome your support, but please do not substitute your decisions for mine.

BECAUSE

Choice has risks, normal in everyone’s life, so I may make mistakes or do something I regret.

THEREFORE

Respect my decisions, even when they differ from yours, and help me learn from my mistakes.

BECAUSE

I need to proceed at my own pace in order to feel satisfied, fulfilled, comfortable, and safe.

THEREFORE

Place my needs before tasks, and realize that we need to work together.

BECAUSE

Purpose, meaning, enjoyment, personal growth and relationships are important in my daily life.

THEREFORE

Promote ways I can achieve my goals, make a difference, and relate to people every day.

DAA Advisory Council

Our Advisory Council is comprised of individuals living with dementia symptoms.  Their insights and knowledge are vital to our mission, vision and goals while providing the crucial guidance and perspective that drives all of DAA’s efforts.  The DAA is grateful and appreciative for the following Advisory Council members. (click here)

DAA Partners

Our DAA Partners are a coalition of passionate people, organization, specialists and communities with a commitment to furthering DAA’s vision, mission and goals that support the well-being of individuals living with dementia and those who care about them. There are no membership fees or dues and we invite you to join us as a DAA Partner.  The DAA is proud to have the following Partners. (click here)

DAA Scientific Advisory Board

Our Scientific Advisory Board is comprised of outstanding professionals with diverse backgrounds, knowledge and expertise in dementia research, policy and practice.  The Scientific Advisory Board provides technical clinical and scientific guidance and advice for DAA initiatives.  Board members have made significant contributions to advancing person-centered dementia care and services and are committed to furthering DAA’s vision, mission and goals. The DAA is honored to have the following Scientific Advisory Board members. (click here)

DAA Board of Directors

Our Board of Directors are responsible for the management and operation of the organization. The DAA is privileged to have the following talented and dedicated Board members. Click here.

DAA Workgroups

Many DAA Partners are involved in DAA efforts through Workgroup participation. The Partners’ wide ranging disciplines and diverse experiences and expertise are invaluable to ensuring the DAA’s efforts are well informed and shaped.

Art & Dementia Workgroup

Chair – Mary Sue Wilkinsen

Creative arts such as sculpture, painting, drawing, dance, performance, film, pottery, knitting, poetry, writing, textile art, and jewelry making among many others can be uplifting, inspiring, connecting experiences. The DAA’s Arts & Dementia Workgroup is a virtual place where people interested in dementia and creative arts can come together to:

  • Discuss how diverse forms of art are being used as creative outlets of expression, communication and connection;
  • Use creative arts as a means to change societal understanding and attitudes about living with dementia; and
  • Share and inspire creative community together.
Optimizing Wellbeing Workgroup

Chair – Jan Bays, PT

The Optimizing Well-Being Workgroup focuses on: transforming outdated medicalized practices with person-centered practices; identifying person-centered dementia competencies and optimal education & skills; identifying criteria for best models of person-centered dementia care and support across all settings; and development & use of appropriate performance measures.

Technology & Dementia Workgroup

Co-Chairs – Rich Fenker and Brenda Roberts

The Technology & Dementia Workgroup is focused on: learning about available technology; developing a taxonomy for dementia-related technology products and services and guidelines for person-centered relevance; encouraging the development of person-centered dementia technology products and services; and developing a web-based catalogue of available technology products.

Accomplishments

2017

  • Held community Caring Conversations in Tulsa, OK, Atlanta, GA and Washington, DC
  • Partnered with a PBS affiliate to develop a documentary about LIVING WITH DEMENTIA.
  • Hosted the Re-Imagine Life with Dementia Conference in Atlanta, GA in June 2017.
  • Published the song “Living Beyond Dementia”.
  • Published “Living with Dementia: An Unexpected Journey” that won a 2017 Mature Market Media Award.

Click here for DAA’s prior year accomplishments.

Help support our important work by DONATING now!