In December 2019, something unique happened. A nonprofit group—the National Council of Dementia Minds (NCDM)—was established by and for people with mild cognitive impairment or some form of dementia. The idea came from Brenda Roberts, whose husband, Mark, was diagnosed with vascular dementia about 10 years ago, when he was 62. Baffled by his symptoms, Roberts, who lives in Elwell, MI, was determined to learn more about the disorder.
She completed a course in advanced clinical practices in dementia from the University of Michigan in Ann Arbor and earned certifications as a dementia trainer, consultant, and life engagement leader from Positive Approach to Care, an organization in Hillsborough, NC, that advocates for patient-centered caregiving. Armed with this knowledge, Roberts began educating and training those interested in the field. As part of that process, she involved people with dementia. When Roberts realized their value, she approached the organizers of the Michigan Assisted Living Association's Conference and Dementia Summit and suggested including people with dementia as speakers.
Through Facebook, Roberts found nine interested people. At the conference, they co-presented with professional speakers and participated in a separate panel called “A Journey with Dementia Minds,” in which they read a series of letters about their lives. The success of the presentation prompted Roberts and two other participants to create NCDM.
The group's primary mission is to allow people with mild cognitive impairment or dementia to share their strategies for living well and to lobby for better care, treatment, and diagnosis. The board of directors includes Roberts and her husband, Mark; Steven Barbieri, 63, of Meridien, ID, a martial artist with chronic traumatic encephalopathy; and Bonnie Erickson, 64, of Billings, MT, who has various forms of dementia.
A series of support groups called Dementia Minds meets virtually once a week. During the meetings, members share stories and collaborate on educational events such as webinars and projects. A recent webinar, hosted by doctors living with dementia, examined the biological underpinnings of neurocognitive disease. Another webinar focused on eliminating stigma, debunking myths, and challenging preconceptions about life with dementia. Other topics have included living well with Alzheimer's disease and other types of dementia and the benefits of early diagnosis.
When Erickson, a former program analyst with the Department of Homeland Security, was first diagnosed, she hid her condition. Joining NCDM helped her realize that this secrecy increased her feelings of shame and isolation.
Monica Downer, a former teacher of students with disabilities who was diagnosed with mild cognitive impairment in 2016, also felt isolated. Through NCDM, she joined a support group for people of color, with whom she can discuss the challenges they face regarding care and treatment, including disparities in diagnosis. For example, a study published in Alzheimer's & Dementia in 2022 found that Black participants in research studies were 35 percent less likely to be diagnosed with Alzheimer's disease and related dementias than White participants—despite national statistics that indicate that Black Americans are about twice as likely to develop dementia. “It's great for us to get together and find ways to get the word out to our community,” Downer says.
The council prides itself on its diversity, with support groups for Black and LGBTQ+ members. The organization tracks its demographics and continues to strive for even more inclusivity.
For many, NCDM provides a new sense of purpose. Sara Langer, a retired neurologist in Minneapolis, says the organization allows her to remain engaged and committed to changing perceptions about dementia. Langer was diagnosed with Lewy body dementia after her symptoms were either dismissed or misdiagnosed. As part of the doctors' group, Langer aims to educate medical students about the disorder so fewer people fall through the cracks.
Other members have launched new careers. Jay Reinstein, a retired assistant city manager in Fayetteville, NC, was diagnosed with early-onset Alzheimer's disease at age 58 in 2018. Joining the Brotherhood of Dementia Minds, an all-men's group at NCDM, inspired him to volunteer for the Alzheimer's Association. Through the Walk to End Alzheimer's, he and his team, the Jay Walkers, have raised more than $150,000. In 2023, he was recognized by the Alzheimer's Association as the national advocate of the year. “At NCDM, I focus on what I can do rather than what I can't,” says Reinstein.
As part of its resources, NCDM has compiled a checklist of symptoms that might indicate dementia, which can be a good starting point for patients and their health care providers.
The council has been involved in research projects with institutions like the University of Michigan and the Alzheimer's Association.
NCDM relies on donations and fundraising efforts such as fun runs like Race for the Minds, an event established by Lacey Abell, Erickson's daughter, in Billings. Initially a local race, it now includes participants joining virtually from different states. The council continues to develop new educational materials, advocate for better standards of care, and build stronger communities. It also has plans in place for new leaders, given the progressive nature of dementia. Board members engage in ongoing discussions about succession planning and mentorship for future board members. The organization proactively discusses the potential need for transition with board members, if necessary.
“Our aim is to balance the individual's needs and contributions with the overall effectiveness and continuity of our board,” says Roberts. The founders regularly recruit new board members through social media and by word of mouth and consistently help mentor them.
When Monica Downer was diagnosed, her doctor suggested she stop working. Joining NCDM and sharing knowledge, supporting others, and inspiring change has given her life new meaning. “I could probably have just stayed in bed and done nothing,” she says. “Being part of this community has been a reason to get up and get involved.”
