The 2022-2023 Lived Experience Panel Report Voices of the Lived Experience Panel: Health Equity in Dementia Care and Research, by IMPACT and LEP members including: María P. Aranda, Talha Ali, Willetha Barnette, Bart Brammer, Katie Brandt, Roberta Cruz, Monica Downer, Shekinah Fashaw-Walters, Darrell Foss, Lupita Gutierrez-Parker, Ladson Hinton, Freddye G. James, Gary Epstein-Lubow, Carolyn Malone, Karen O Moss, Katherine D. Peak, Judith S. Rocha, summarizes the overarching themes that emerged during four meetings of the NIA IMPACT Collaboratory’s Lived Experience Panel, the Health Equity Team, and the Engaging Partners Team. The goal of these discussions was to learn about Panel members’ lived experiences and insights related to health equity in dementia care and research practices.
Panel members shared their own experience living with dementia or mild cognitive impairment while others spoke as care partners or proxies. The report documents a conversational process among panelists. Two major concepts emerged. The first is that people living with Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD) and their families have different experiences from one another. The second is that there is a need for a broad and inclusive plan to understand and address weaknesses within the systems of care in the United States, which are often fragmented and lack accountability for health equity.