About Us

 

 

Our Vision

The Dementia Action Alliance (DAA) envisions a society where dementia symptoms are better understood and accommodated as a disability, and individuals and families living with dementia are fully included and supported.

Our Mission

The DAA is a diverse coalition of passionate people creating a better society now for individuals to LIVE with dementia.

Our Goals
  • WORK directly with individuals who have dementia to learn from and amplify their first person perspectives about dementia.
  • EDUCATE the public about living with dementia to raise awareness and increase understanding. Lack of information fosters misperceptions and stigmatizing behaviors toward individuals with dementia.
  • COLLABORATE with the diverse dementia community for collective impact to advocate for public policies, practices and research that optimizes the well-being of people living with dementia.
  • CREATE, curate and post free person-centered dementia support resource materials online.
  • SUSTAIN the operation of the Dementia Action Alliance.

Person-Centered Dementia Support Definition

Person-centered support for people living with dementia is based on the fundamental belief that every person has a unique background, skills, interests and the right to determine how to live his or her own life.  Person-centered dementia support is focused on nurturing the person’s emotional, social, physical, and spiritual well-being.

This is achieved through reciprocal, respectful relationships by:

  • Valuing personal autonomy, choice, comfort and dignity;
  • Enabling opportunities for continuation of normalcy and growth of self;
  • Focusing on strengths and abilities; and
  • Enhancing individual purpose, meaning, enjoyment and belonging.

“How you relate to us has a big impact on the course of the disease. You can restore our personhood and
give us a sense of being needed and valued…Give us reassurances, hugs, support, a meaning in life.
Value us for what we can still do and be and make sure we retain our social networks.”

~ Christine Bryden, “Dancing with Dementia: My Story of Living Positively with Dementia”


Person-Centered Dementia Values and Principles**

Because people who have dementia are the experts about the lived experience of the condition, the following Values & Principles are written from their perspective in first person narrative.  This orientation helps focus people who do not have dementia on what is important.
  • I am a person living with dementia. Spend time with me to get to know me and relate to me as a person with a unique background, life history, interests and capabilities.
  • Understand that although aspects of my personhood may become increasingly hidden, I am still here.
  • Understand that the reciprocal nature of relationships is important to me, and that 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. Recognize my personal goals and interests may change over time and may not be the same as yours.
  • Promote ways for me to continue to experience purpose, meaning, relationships and enjoyment in my daily life.
  • My choices may have risks and I recognize risk as a normal part of 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 both physical and verbal. I communicate the best I can; assume positive intent. Attempt to understand my needs and my reality. Please be compassionate.
  • When supporting me, prioritize my needs. Schedules and tasks should accommodate my needs and pace.
  • Help me stay connected to what is important to me.

**All principles are equally important.

The DAA “Person-Centered Dementia Values and Principles” were inspired by the Pioneer Network’s set of Values and Principles and customized specifically for the Dementia Action Alliance by people living with dementia.

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