In June 2017, I had the privilege of being involved with the first Dementia Action Alliance
Conference: “Re-Imagine Life with Dementia” in Atlanta, GA.
The conference combined the lived experience of 30 people diagnosed with various forms of dementia along with a variety of individuals who interact with dementia. This included; care, facilitators, music & speech therapist, dementia service providers, technology groups, and the list went on. This conference was filled with knowledge and education. It was one of the most powerful conferences I have attended.
DAA involved people living with dementia in every part of the conference. From conception
to planning to speaking and clean-up – we were included and “Nothing About Us, Without Us”
was implemented in every aspect. People often asked how people living with dementia (PWD) could handle a conference of this magnitude. DAA leaders (Karen Love & Jackie Pinkowitz) were essential to our success. They understand people living with dementia and when they didn’t they made it a point to listen.
A few examples; there was a quiet room just for PWD where we could go to escape the noise &
confusion, we were given earplugs, a sign that said: “slow down” (for speakers who were talking
too fast). We were always acknowledged first with questions (to help us remember what the
question was). Stickers were placed on the elevator buttons designating the conference floors
and tape on the floor pointed us in the right direction. I have never experienced a conference
with such passion and involvement.
I had the privilege of presenting part of the session on Compensatory Strategies. Although we
started the session with MANY technical difficulties, the session was well received. Enjoy the
viewing and please pass to others who may be struggling with the early challenges of dementia.