The National Council of Dementia Minds initially consisted of 8 persons living with dementia. They were invited to courageously conduct a presentation about their story. It was so informative and unprecedented to hear the lived experience firsthand that they were flooded with demands for more speaking engagements.
Soon, the “original” Dementia Minds group was formed with the goal to continue to offer dialogue with and education by persons living with dementia. Since its inception in 2019, the National Council of Dementia Minds has provided educational opportunities for over 3,000 people in four countries. Further, demand by persons living with dementia continues to grow as do other opportunities. This was the catalyst for the formation of a not-for-profit organization.
Two additional Dementia Minds groups have been formed representing 22 people and 11 states. Each group consists of persons living with NCD and are supported by two or more facilitators.
Dementia Minds groups meet on a weekly basis via Zoom. Meetings follow a format aimed at creating dialogue and educational opportunities about the lived experience and strategies to live well with NCD. The meeting includes building a unified group with a shared purpose, exploration, learning, creative production, and so much more. This is done for the purpose of creating and delivering educational presentations and resources. These educational initiatives are designed for persons living with dementia, licensed health care professionals, researchers, families, care partners, policymakers, and communities at large. For example, to date, Dementia Minds groups have presented formally and informally to medical students, assisted living providers, social workers, physical and occupational therapists, and other professionals supporting persons living with dementia.
Members report a positive impact on their quality of life and relationships with care partners and others. The groups have developed a sense of belonging and empowerment. Their shared mission provides meaning and purpose as they work toward a common goal and experience the joys and benefits of helping others.
"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."