With a one-in-a-million diagnosis rate and limited resources for families, CareOne shines a light on the unique role of assisted living facilities in CJD care and caregiver support
NOVEMBER 05, 2024 – FORT LEE, NJ – CareOne, a leading, family-owned senior care provider with more than 60 locations in the U.S., partnered with Cooperman Barnabas Medical Center to host a Continuing Medical Education (CME) event on Creutzfeldt-Jakob Disease (CJD) and other prion diseases. This event was aimed at building CJD awareness and educating medical professionals about this devastating condition that often goes unrecognized. Having recently cared for two patients with CJD, CareOne has identified a critical need for robust patient and caregiver support. Assisted living and memory care facilities are uniquely equipped to address these challenges effectively.
Though rare, it most commonly affects people between the ages of 55 and 75, with symptoms developing between the ages of 60 and 65. Because symptoms present similarly to dementia and Alzheimer’s, many of those with CJD often have a delayed diagnosis. An aggressive disease, 70% of those diagnosed will not survive a year. In New Jersey, there are upwards of 18 new cases diagnosed every year.
“Families of these patients require support both in CJD awareness and in caring for their loved ones. This disease progresses so rapidly and the CJD Foundation is a lifeline to these caregivers,” said CareOne Certified Dementia Specialist, Mary Beth Rose, who cared for the two CJD patients at CareOne. “Without access to specialized communities, families often feel completely alone. We learned that settings like assisted living or memory care facilities offer a lifeline – not only for the patients themselves but also for their caregivers who may feel overwhelmed by the progression of this disease.”
As scientific research on this rapidly progressive neurodegenerative disease continues to advance, Mary Beth emphasizes the importance of providing holistic support to patients and their caregivers.
“For those impacted by CJD, finding a community of understanding and compassionate environments can make all the difference in navigating such a difficult journey,” she added.
This event, held in the Cooperman Barnabus Medical Center Auditorium on October 29th, was attended by many New Jersey professionals across the healthcare industry including physicians, nurses, case managers, psychiatrists, neurologists, social workers, infectious disease experts, memory care and skilled nursing facilities, and more. Dr. Brian Appleby, a neuropsychiatrist at the University Hospitals Cleveland Medical Center and Medical Director of the CJD Foundation, attended the event as its speaker. Attendees walked away with CJD awareness, a comprehensive understanding of other prion diseases, including the underlying pathophysiology, key clinical features, and the ability to differentiate between the various types of prion diseases.
