Challenging Dementia Stigma: How the National Council of Dementia Minds Is Reshaping the Narrative

The National Council of Dementia Minds (NCDM) is a 501(c)(3) nonprofit organization founded and governed by individuals living with dementia, working to combat the social stigma surrounding neurocognitive disorders. By fostering education and peer support, the organization aims to build a new narrative focused on living with meaning, purpose, and connection, according to the Michigan Health Endowment Fund.

What Is the Mission of the National Council of Dementia Minds?

The NCDM operates as a national entity dedicated to supporting people living with all types of dementia, including mild cognitive impairment and younger-onset conditions. As reported by the Michigan Health Endowment Fund, the organization’s mission centers on developing a national corps of “Dementia Minds” groups. These peer-support groups facilitate education and dialogue among people living with dementia, their families, care partners, healthcare providers, researchers, and policymakers.

Lisa Dedden Cooper, the NCDM Director of Operations, notes that the organization’s work includes:

• Hosting “Meetings of the Minds,” which are larger online gatherings.
• Providing education and support for family and friends.
• Creating practical tools and resources designed to help individuals live well with their diagnosis.

Why Is Addressing Dementia Stigma Critical?

Stigma often prevents a clear, healthy, and complete understanding of what it means to live with dementia. According to the Michigan Health Endowment Fund, June is recognized as Brain Health and Alzheimer’s Awareness Month, serving as a period to draw attention to the impact of stigma on those living with the condition and their loved ones. By shifting the narrative, organizations like the NCDM aim to move away from the perception that a diagnosis marks the end of a meaningful life.

Understanding Dementia: Clinical Definitions

It is important to distinguish that “dementia” is not a specific disease, but rather a clinical term for a group of symptoms. According to the Cleveland Clinic, these symptoms involve a decline in cognitive functioning—such as memory, thinking, mood, and behavior—that interferes with a person’s daily life. While Alzheimer’s disease is the most common cause, dementia can result from various underlying brain diseases that damage areas involved in learning, decision-making, and language.

Current estimates indicate that approximately 6.7 million U.S. adults age 65 or older are living with dementia, as reported by the Cleveland Clinic. Although medications may help slow the progression of symptoms, the condition can shorten life expectancy, and it is not considered a normal part of the aging process.

Frequently Asked Questions

Who governs the National Council of Dementia Minds?

The NCDM is the first national nonprofit organization founded and governed by people living with dementia, according to the Michigan Health Endowment Fund.

Is dementia a single disease?

No. According to the Cleveland Clinic, dementia is a clinical description for a set of symptoms caused by underlying brain diseases, with Alzheimer’s disease being the most common cause.

What types of support does the NCDM offer?

The organization provides small group peer support through its “Dementia Minds” groups, larger online “Meetings of the Minds” gatherings, and educational events for families, caregivers, and professionals, as noted by the Michigan Health Endowment Fund.