Alzheimer's blog

Dementia alliance shares values embracing kindness

By Angela Lunde March 2, 2017

"Nothing About Us without Us."

These are words spoken all across our nation by people living with dementia, and nothing could be more important. I am committed to doing everything that I can to make sure that those living with dementia have their voices heard, and are included in all matters that pertain to them.

As someone who doesn't have dementia, I have only a limited perspective and understanding about the lived experience of dementia. Unfortunately, the all too common occurrence has been to exclude people living with dementia on most matters that pertain to them.

The good news is that with social media more and more people with dementia are finding opportunities to express themselves by writing and speaking about their experiences of living with dementia.

Not long ago the Dementia Action Alliance (DAA) shared some work that was inspired by the Pioneer Network's set of Values and Principles and customized specifically for the DAA by people living with dementia.

Those living with dementia who participated in this project encourage people to embrace these values and turn them into acts of kindness towards those living with dementia. I'm grateful to have the opportunity to pass their words and message along:

  • I'm 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,
  • 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.
March 02, 2017