Adira seeks to achieve one outcome: better lives for people impacted by neurodegenerative diseases.

But measuring “better lives,” “well being,” or “quality of life,”—whichever term you choose—can be difficult.

We began to ask ourselves the questions:

  • What do better lives mean for people impacted by ND?
  • Can these unique expressions be quantified?
  • What tools exist to measure quality of life?
  • What measures do these tools use to define and evaluate quality of life impact?
  • How effectively is quality of life supported by the full system of health care and social care programs for people impacted by ND?

We turned to our listening activities to understand and quantify “better lives for people with ND.”

Based on the things we heard people most impacted by ND say they needed, we created a set of five measures that we recommend as a common standard to evaluate quality of life. We distilled the many unique expressions of needs and desires communicated by people most impacted by ND into five areas of impact that we feel capture the shared human identity among us to seek better lives.

People want: more time, more money, more energy, more confidence, and more connection.

We also collected and analyzed 50 assessment tools commonly used to evaluate quality of life to better understand the landscape of tools that exist and how they currently measure quality of life.

Finally, we brought together professionals from more than 30 organizations to present our findings and collect feedback.

These efforts alone are not nearly enough to provide answers to all the questions above. We ask for your comments, opinions, ideas, and contributions.

  • General comments and feedback can be sent to our programs department.
  • If your organization is interested in partnering with Adira to act on recommendations included in the report, please contact Programs Manager Lauren Ruiz.

Library of Assessment Tools

Send comments and feedback on the tool by emailing the programs department.