History set to be made in N.C. dementia care in volunteer project

Dementia affects more than 55 million people worldwide, according to the World Health Organization, and The N.C. Department of Health and Human Services estimates that more than 200,000 North Carolinians will be diagnosed by 2025. By 2030, the Moore County population over age 65 will increase by 26 percent, the highest increase compared to any other age group and the one most often affected by dementia. The impact of dementia in Moore County is already palpable as it touches the lives of a family member, friend or neighbor.

Dementia affects memory, thinking or one’s ability to do activities of daily living, like eating, dressing or bathing, with its most common form being Alzheimer’s disease. Those coping with the diagnosis and their families face stigma and isolation, and are often left without enough education, skills training, community resources and support.

“One of the biggest barriers to better dementia care is the lack of engagement,” says Karen Sullivan, board-certified neuropsychologist, owner of Pinehurst Neuropsychology Brain and Memory Clinic, creator of the I CARE FOR YOUR BRAIN program and recipient of the first Reid Fellowship for Healthcare Transformation through The Foundation of FirstHealth. “The truth is that social isolation, stigma and boredom contribute more to dementia severity than does the underlying neurodegenerative disease. Once people understand that we have a lot more influence over the course of the dementias, they want to be more involved.”

Through The Foundation of FirsHealth’s fellowship, Sullivan is collaborating with renowned occupational therapist Teepa Snow and her Positive Approach to Care® on a brand-new initiative to be called The Engaged Brains Project. The program focuses on a community-wide, person-centered approach to dementia education and care, with a goal of reducing the unnecessary distress and disability that has become synonymous with these diagnoses.

“Until there is a cure for dementia, there’s care,” Snow says. “If you are not part of the solution of effective care, then you are unfortunately part of the problem. It takes an engaged community to support the brain changes of dementia.”

Using this philosophy of engagement, The Engaged Brains Project will provide a one-year (September 2024-September 2025), public training program in Pinehurst to increase dementia knowledge, care skills, and support with the goal of culture change in dementia care. There is no charge to participate in the training thanks to a generous donation from a community member to The Foundation of FirstHealth’s NeuroCARE Fund (CARE is an acronym for the matrix the Foundation uses in cataloging philanthropic support meaning Clinical, Advocacy, Research and Education.)

“The Foundation of FirstHealth is offering this community a truly phenomenal gift,” Sullivan says. “What we are going to do with The Engaged Brains Project has never been done before, and I have never heard of an all-community effort having this much support. The idea is that we want to reach a cultural ‘tipping point’ where all of us are acting from the same person-centered philosophy of dementia care. When we engage people with dementia using person-centered strategies and provide them with opportunities to make meaning and communicate, moments of joy and connection can balance out the harder times.”

Two free informational sessions for The Engaged Brains Project led by Sullivan are set for June 14 (2-4 p.m.) and June 28 (4-6 p.m.) at Community Presbyterian Church, located at 125 Everette Road in Pinehurst and are open to the public. Attendees may come and learn about all levels of involvement with the project. Register for either session by emailing program coordinator Carrie Frye, [email protected] or calling 833-423-9237.

Community Presbyterian Church and its leadership were eager and generous to lend a helping hand and a larger venue for The Engaged Brains Project training sessions, since the church has a dementia care ministry with a monthly support group already in place.

“Under the leadership of Dr. Sullivan, the stage has now been set for every possible facet of our community to be supportive of those living with dementia and for their care partners,” says Rebecca Ainslie, RN and facilitator at Community Presbyterian. “We are extremely fortunate to be provided with opportunities and prepared to show bold compassion to persons with the day-to-day challenges of brain change. My personal hope is that we will all be inspired to contribute in some way to the momentum of the project by increasing awareness, education, care, funding and especially the assurance that ‘you are not alone.’”

One Pinehurst resident, Bonnie Becker-Jones, is excited to be involved and knows firsthand about the isolation factor dementia can bring, having been diagnosed last July. “The stigma regarding this disease has created a challenge to my relationships with family and friends,” she says. “Any programs aimed at educating people about this disease are essential to improve the social lives of those affected.”

The Engaged Brains Project also received the endorsement of the Dementia Alliance of North Carolina, a statewide nonprofit dedicated to serving families living with dementia with comfort, assistance, resources and education.

“We are thrilled to partner with The Engaged Brains Project through The Foundation of FirstHealth,” says Heather Hooper, executive director of Dementia Alliance of North Carolina. “By fostering a community-wide, person-centered approach to dementia education and care, we are not only transforming lives but also setting a new standard in what it means to be dementia friendly. We are excited to see the profound impact this project will have on the Moore County community and beyond, as we work together to reduce stigma, enhance early diagnosis, and improve care through radical engagement and comprehensive training.”

The Engaged Brains Project participants may choose varying levels of involvement from dementia champion, ally, informed, or even just a friend level by making a tax-deductible donation to The Foundation of FirstHealth’s NeuroCARE Fund. Champions will commit to trainings with Snow’s Positive Approach to Care® team in both Hillsborough and Pinehurst to be a certified trainer whose knowledge can then be shared with future mentees in a community sector of their choosing, like healthcare, banking or the arts throughout the upcoming year. Sullivan will also lead monthly champion meetings and trainings for project participants, where dementia care is available and provided by trained volunteers.

“We are determined to raise the standard of care locally and make our efforts last far into the future,” Sullivan says. “I can’t wait to show the world what we can do through the power of community and philanthropy.”

Snow adds, “Please become knowledgeable and gain skills, so that you can help make a difference. We are beyond thrilled to be able to be a part of building a competent care community through The Engaged Brains Project and are eager to get started — please come join us.”

For more information or to register for the June information sessions, visit www.TheEngagedBrainsProject.com, email [email protected] or call 833-423-9237.

Feature photo: Occupational therapist Teepa Snow, left, and board-certified neuropsychologist Karen Sullivan are excited to join forces and bring a new community dementia initiative in The Engaged Brains Project to Moore County made possible by the philanthropy of The Foundation of FirstHealth.

Contributed/Courtesy photo.

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