BY JOHN ROSS AMIGH
Staff Writer
The Still Us Foundation, a Moore County nonprofit dedicated to understanding and support around dementia care, is set to receive a $1 million grant as part of the recently approved state budget.
The foundation focuses on new approaches to dementia care, highlighting that “No matter a diagnosis, we are Still Us.”
“We don’t want people’s identity to become the dementia patient, or the dementia sufferer,” said local neuropsychologist and foundation creator Dr. Karen Sullivan. “There’s so many stigmatizing experiences that people with dementia get that are really painful and are entirely man-made.”
The organization is helping to create cognitive bridges for continued inclusion through partnering with businesses, faith communities, clubs and other organizations. Sullivan’s long-term vision for the Still Us Foundation is to raise $15 million to create a new model of dementia care through the development of a farm-based sanctuary to serve as a community hub that offers programs, caregiver support and front-line workforce training.
Sullivan said the need for a place like the proposed sanctuary comes as an unintended consequence of the mortality rate of Alzheimer’s lowering in recent years.
“On the surface, that looks great; people aren’t dying from it as much,” Sullivan said. “But the issue there is that means more people are living with it.”
The goal of the sanctuary is to alter the way people with brain changes are cared for. It is set to offer programs not just for affected individuals but also for care partners and health care workers, aiming to change the approach to dementia care through a coordinated effort.
Sullivan explained how current dementia care can be grounded in entertainment or passive supervision, leaving out the personal aspects of caring for and living that make us human.
“I’ve grown to say we treat people with dementia like a chair,” Sullivan said. “It’s like they’re there, we understand their most basic function, but we don’t do anything to elevate the chair.”
To fund the foundation, Sullivan said she met and talked with legislators and other state officials but had no idea a grant was on its way.
“A wonderful person sent me an article last Thursday that said, ‘Congratulations.’ I opened up The Pilot, read it on my laptop and nearly keeled over when it said $1 million for Still Us,” Sullivan said. “I had no idea.”
The grant funding will be combined with over $800,000 in donations from individuals the foundation has received to go toward the sanctuary project. The state money is also only a portion of the total funding, $2.31 million, allocated for Alzheimer’s and dementia support in the budget.
Still Us is just the newest chapter of Sullivan’s journey to change the way brain change is studied and cared for. Thirteen years ago, she founded the Pinehurst Neuropsychology Brain and Memory Clinic, and through her work with I Care for Your Brain, began making a broad impact. Through this website and YouTube channel, Sullivan created more than 100 videos that provide high-quality, free advice on brain health.
Her outreach led to a grant from the Reid Fellowship for Healthcare Transformation through The Foundation of FirstHealth, which provided funding for The Engaged Brains Project. The initiative trained more than 3,000 community members on dementia inclusion. The program also launched over 75 inclusion initiatives such as Engaged Cinema, Engaged Golf, and dozens of neighborhood volunteer programs that bring purpose and social connection back into the lives of people living with brain change and their care partners.
Even with the initiatives, though, Sullivan realized that all the money going into brain change research was looking for a cure, not how to help the people living with brain change in the present day.
“So if we’re really going to change that lived experience, the people that provide care in institutions for our neighbors with brain change, they have to be taught the power of what’s left, and how to serve it,” Sullivan said.
When finding the right location to help people living with brain change, Moore County made perfect sense to Sullivan. Thanks to an older population that is ready and able to give to nonprofits, especially one that targets helping aging brains, the foundation wouldn’t be where it is without the generosity of Moore County, she said.
Sullivan praised longtime First Health of the Carolinas Foundation leader Kathy Stockham for helping create such a philanthropic community, saying she was a mentor to the Still Us foundation. “Her touch on Moore County really can not be overstated, in terms of, she trained us all how to give.”
While the Still Us foundation is still very much in its beginning stages, Sullivan plans to begin day programming for affected persons, care partners and medical workers on Oct. 1 of this year.
Until then, the foundation will be working on securing the farm property to create the sanctuary, and they are still looking for donations for that.
“We need a safe place to deliver this sacred message about dementia,” Sullivan said. “Their humanity continues to exist, and that takes skills and bandwidth to serve it, it is instinctual, but it needs to be honed. And I don’t think you can do that in a medical office.”
Contact John Ross Amigh at jramigh@ncsu.edu.
