Lived Experience Panel
“What if, through a demonstration of stakeholder engagement, we, the persons living with dementia, were asked, what would bring the greatest relief and benefit us the most?” Louise P, Retired Physician living with Lewy Body Dementia
Brenda N. was able to complete "bucket list" items, like a trip to the Grand Canyon with her husband, even after a diagnosis of early onset dementia
The Lived Experience Panel reflects a coordinated effort between the National Institute on Aging (NIA) IMPACT Collaboratory and the Alzheimer’s Association.
The Lived Experience Panel is a diverse community of people living with dementia or caring for people living with dementia. The panel is composed of up to 9 people reflecting various perspectives, including:
- Three people with a documented diagnosis of early stage Alzheimer’s, Mild Cognitive Impairment (MCI) or other early stage dementia.
- Three care partners/caregivers representing his or her own experience caring for an individual living with dementia.
- Three care partners/caregivers (proxies) who can represent the perspective of one or more individuals living with middle or late stage dementia or who are deceased.
Mission Moment
"It turned out I do have some observations about the gaps and barriers in care my mom has experienced and challenges that we face together as a family. I'm really humbled and honored by this opportunity to share some of our lived experience with you today in the hopes that it will contribute to your understanding of the needs of real families."
- Marie Martinez Israelite, MSW
This Mission Moment is from the first IMPACT Collaboratory Annual Meeting, in which Marie Martinez Israelite shares her experience as a care partner for her mother living has dementia. Ms. Israelite describes her mother’s experience as a former clinician who now must face the challenges of dementia care, as well as the expectations of care partners in these situations.