Lived Experience Advisory Partners (LEAP) Council

TDRA’s Patient and Family Advisory Council has a new name! In line with our dedication to using person-centered language, the council is now called 'Lived Experience Advisory Partners (LEAP)'.

This year, our LEAP members highlighted the importance of recognizing nuances in language when speaking about people living with dementia and those who support them. Language can dictate how someone thinks and feels about them self. As such, it’s important to be mindful of the distinction between disease and identity. A disease does not define who someone is.

With this in mind, TDRA undertook an organizational terminology update, which was guided by our LEAP Council. We formed a subcommittee with three LEAP members, who worked with us to brainstorm terms to replace ‘patient’ and ‘caregiver’. The new terminology options were included in a digital survey, which was sent to the entire TDRA community. The results of this survey were discussed in a final focus group with the LEAP Council, where we landed on TDRA’s new standard terms: person living with dementia, and caregiver/care partner. Definitions for these terms are available , and were drafted in collaboration with LEAP members. TDRA will use these terms in all communications moving forward; we encourage our partners to consider the use of person-centered language, and welcome the adoption of our terminology and definitions.

Given the updated terms, it was necessary to change the name of our Patient and Family Advisory Council. Through a similar process (i.e., subcommittee, focus groups), we arrived at ‘Lived Experience Advisory Partners’, which is more inclusive and better reflective of the membership.

“It is so important to see the ‘person’ living with dementia first... to offer the respect and dignity that every person, regardless of their condition, deserves”, said Fran Schellenberg, LEAP member. “Person first language is all about this, and reflects the values that help support positive self-image, regardless of the challenges faced by people living with dementia. I'm so happy that TDRA has made this positive move in the language it uses."

Thank you to our LEAP members for continuing to share invaluable insights that guide TDRA’s work. Learn more about the LEAP Council.