Dementia. The word alone can bring fear and stigma, especially when it is received as a diagnosis. More than 200,000 North Carolinians are living with a dementia diagnosis, according to the N.C. Department of Health and Human Services, leaving individuals and their families with often more questions than answers. A local husband and wife team, Dale Krech and Pat Soler, who are dementia champions with The Engaged Brains Project, set out to change that for their fellow Moore County neighbors.
Through their volunteer efforts with The Engaged Brains Project, a positive, person-centered dementia care initiative, led by board-certified neuropsychologist Karen D. Sullivan and made possible by the philanthropy of The Foundation of FirstHealth’s Reid Fellowship for Healthcare Transformation, Krech and Soler wanted to do am impact project that offers access to resources to these families. Thus, Pathfinders, a new, no-cost program offering support to individuals, care partners and families impacted by dementia, was born.
“When we were active care partners 20 years ago, this type of service was not available,” Soler said. “We know, personally, the value of having access to information, and, more importantly, for families to know they are not alone on this journey. Dr. Sullivan’s fellowship and her outreach with The Engaged Brains Project have made so many people aware of The Foundation of FirstHealth’s commitment to those in our community affected by brain change and dementia. Community members and providers alike responded to become a part of our network of referrals, offering to help perfect strangers with their needs, making it even more of a blessing to live in this community.”
“The Foundation of FirstHealth is proud to support the Pathfinders initiative to enhance care and resources for those affected by dementia in our community,” said Dana L. Casson, CFRE, president of the Foundation of FirstHealth. “Dale and Pat’s dedication, combined with Dr. Sullivan’s leadership through The Engaged Brains Project, is creating a meaningful impact for families navigating this challenging journey and ensuring that no one has to face dementia alone.”
“I am so grateful to Dale and Pat for stepping up in such a generous way for this incredible Pathfinders initiative,” Sullivan added in a news advisory. “Our local population is aging, and along with that comes an increase in age-related medical conditions, like dementia. We are working hard to build healthcare infrastructure to support neurodegenerative diseases, but it’s going to take time, and there is a big community need now. So, Pathfinders is The Engaged Brains Project’s immediate answer to the call.”
Pathfinders services include educational materials, community referrals and one-on-one peer support/counseling with Krech, Soler or other trained volunteers with The Engaged Brains Project in person at the Clara McLean House in Pinehurst with scheduled appointments or via phone or email. Krech and Soler stand ready with brochures about the disease, caregivers handbooks, as well as lists of elder care attorneys, memory care facilities, local support groups, palliative care services, dementia-friendly activities and much more.
Krech was the primary care partner for his first wife for 10 years after she was diagnosed with early-onset Alzheimer’s disease at the age of 54. Soler cared for her mother for 10 years as well. Together, they personally understand the range of emotions, heart-wrenching decisions and the need to be prepared. Both are trained and certified by the Dementia Alliance of North Carolina as support group facilitators and ambassadors. Additionally, both recently completed the Positive Approach to Care® training provided by renowned dementia advocate Teepa Snow through The Engaged Brains Project. For the last eight years, the pair has worked with families living with dementia and currently facilitates three different support groups for dementia care partners and as well as couples.
“When I was on my journey, caring for my first wife, I was all alone,” Krech explains. “Twenty years later, we are now able to help others face-to-face, get the information they need and provide referrals for the services for help along their journey. We can also provide emotional support borne from our experience.
“Oftentimes, we hear from a family who, upon a diagnosis from their doctor, is told, ‘See you next year.’ This is where we can step in, show them the path and help guide them along the way. The feedback we’ve received from families has been humbling yet gratifying by knowing that we’ve helped. We can’t make their journey as perfect as they’d like, but we can smooth out some of the bumps because they won’t be alone. And eventually, they may join one of our support groups and meet others who are sharing their travels.”
In addition to helping families in our community better navigate the waters of brain change, Pathfinders is also providing a service to primary care providers in both the FirstHealth and Pinehurst Medical Clinic systems. Primary care providers are often unaware of local dementia resources that are available and, due to time constraints, may not have the ability to focus on care coordination for this group of complex diseases.
Krech and Soler made the rounds already delivering “prescription pads” to primary care providers throughout the county, so providers can easily hand the patient or family member contact information for Pathfinders.
“Families often do not have the time or energy to do deep dives into the internet to find local answers to their questions,” Soler said. “We can provide them with referrals for services, information about the disease and answer questions like, ‘What do I do next?’ Pathfinders is a lifesaver for families. It is one-stop shopping, but not one-and-done. Individuals can make appointments anytime, as the circumstances of their journey with the disease change and they need different information.”
Pathfinders is a six-month trial program, and the data collected by Krech and Soler from the services provided will help assess the local and future outreach needs of the community overall.
“Dementia is unlike any other medical condition because it’s so personal and deeply affects the care partners,” Sullivan said. “Pathfinders will allow us to track and document the specific resources requested by families, so we can advocate for more healthcare system support soon. My personal dream is to get a neuro-navigator position funded, just like we have in cancer care.
“When someone in the community is starting off on the brain change journey, it can be a very overwhelming time. There’s so much going on with a loved one, so much to learn about local community resources, and so much that can be demanded of the care partner. The vision of Pathfinders is to have all these resources organized with a warm, personal handoff from someone who has been there to lighten the load. I believe that if families didn’t have to play so many roles in dementia care, there would be significantly less burnout. So, serving these families here in Moore County is a great privilege.”
For families living with dementia who would like to schedule an appointment with Pathfinders, contact Krech at 925-413-2570 or Soler at 925-708-3691. For more information on The Engaged Brains Project, visit www.TheEngagedBrainsProject.com or email program coordinator Carrie Frye at [email protected]
Feature photo: Dale Krech and Pat Soler launched Pathfinders as their impact project with The Engaged Brains Project and are offering no-cost support and resources to individuals and families impacted by dementia. Pathfinders offers scheduled appointments at the Clara McLean House in Pinehurst three days a week, as well as phone and email support.
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Contributed article and photo.
