National Council of Dementia Minds

Overview

The National Council of Dementia Minds (NCDM) is a unique nonprofit organization founded and governed by individuals living with dementia. Established in 2019, it aims to challenge stigma and promote a hopeful outlook for those with neurocognitive disorders. As the first national organization of its kind, NCDM emphasizes lived experience and empowers individuals with dementia to take an active role in education, advocacy, and community building.

Mission and Objectives

The primary mission of NCDM is to create spaces where individuals with dementia can share strategies for living well and advocate for improved care and diagnosis. It fosters education and dialogue among individuals with dementia, their families, healthcare providers, researchers, and policymakers. NCDM operates under the principle "Nothing about us without us," ensuring that people with dementia are central to discussions and decisions regarding their lives.

Programs and Activities

NCDM hosts virtual support groups called Dementia Minds, which meet regularly via platforms like Zoom. These groups are exclusively for individuals with dementia or mild cognitive impairment (MCI), providing a safe space for peer support, mentoring, and the development of educational resources. Members collaborate on projects to empower others and challenge societal misconceptions about dementia. The organization also offers educational events and resources, including webinars on topics such as the biological aspects of dementia and eliminating stigma.

Impact and Achievements

As of 2024, NCDM has provided educational opportunities for over 20,000 individuals across the United States and 14 countries. It has been involved in research collaborations with institutions like the University of Michigan and the Alzheimer's Association. NCDM's initiatives have helped members discover new purposes, with some even launching new careers or becoming advocates for dementia awareness.

Leadership and Governance

The leadership of NCDM includes individuals who have been diagnosed with various forms of dementia. Key figures include Mark, diagnosed with Young Onset Vascular Dementia; Bonnie Erickson, diagnosed with White Matter Disease, Vascular Dementia, and Frontotemporal Dementia; and Brenda Roberts, who has certifications in dementia care and serves as Executive Director. The organization is driven by a vision to ensure agency and inclusion for all individuals living with dementia.

History

The idea for NCDM emerged from a successful presentation in 2019 where individuals with dementia shared their personal journeys. This event garnered significant interest, prompting Brenda Roberts and others to establish the organization. Since its inception, NCDM has grown rapidly, spreading its message and support across different communities and countries.

Symbolism and Vision

NCDM uses the dragonfly as its symbol, representing hope, happiness, adaptability, and new beginnings. This resonates with the organization's mission to empower individuals with dementia to live meaningful and purposeful lives, challenging stigmas and fostering hope and inclusivity.