The National Council of Dementia Minds initially consisted of 8 persons living with dementia in 2019 who were invited to conduct a presentation about our personal journeys as individuals living with dementia. Audience members found it so inspiring, informative, and unprecedented to hear the lived experience firsthand that we were immediately flooded with requests for more speaking engagements.
Following that presentation we decided to create the National Council of Dementia Minds with the goal of continuing to offer opportunities for dialogue and education by persons living with dementia. Since then, our "original" Dementia Minds group has continued to seed and lead to the creation of more Dementia Minds groups, each of which consists of persons living with different types of dementia or mild cognitive impairment.
Dementia Minds groups meet weekly via Zoom. Our meetings follow a format aimed at providing peer support and mentoring as we also identify and develop opportunities to share our insights and strategies for living well with neurocognitive disorders with external audiences. These meetings help us build a unified group with a shared purpose, where we explore, learn, and create together. We develop and deliver educational presentations and resources for other persons living with dementia, health care professionals, researchers, families, care partners, policymakers, and communities at large. Our groups create a sense of belonging, empowerment, and genuine purpose as we work toward our common goals and experience the joys and benefits of helping others.
As of 2024, the National Council of Dementia Minds has provided educational opportunities for for more than 20,000 people across all 50 states and 14 countries.
"Dementia Minds was a gift in my life at a time when I needed it most. Our first project, A Journey with Dementia Minds, received rave reviews and opened doors for further educational and advocacy activities. As lived experience subject matter experts, the National Council of Dementia Minds gives those of us living with a dementia diagnosis a voice."
