- whose great grandparents founded The Alzheimer's Disease Resource Center - knows what it's like to care for a loved one with the disease. Her grandmother died 30 years ago of it and her 92 year old father is incapacitated by the disease. "When he fell on the field," she told us of the family cause, "I picked up the flag." Like this self-proclaimed "Long Island Girl," the ADRC is based in the Island and the City. It recently opened an office on Southampton's Flying Point Road. We caught up with Braun at the charity's Art for Alzheimer's Celebrating Paint At The Parrish Party, honoring Harry and Barbara Ludlow from Fariview Farms, LLC.
The ADRC is the go-to for local families in need who are coping with Alzheimer's Disease and other dementias. "We are the ones actually caring for people," Braun told us. "There are legal issues, medical issues, Medicaid
/Medicare issues, how to find quality care, whether to move someone into a nursing home. It takes at least ten or 12 people to care for one individual who has Alzheimer's. So there is a profound need for care. And we provide all of it pro bono
for those who cannot pay themselves."
They also fund research. "Over the many years, we have been involved with stem cell research organizations that are seeking some kind of an answer to neurodegenerative diseases," Braun said. "What we have discovered in the past 30 years - from what I call the Jurassic Period is that the only thing that creates quality of life and stability - within a family scenario and within the individual that suffers himself - is therapy. It's socialization, nutrition, love and attention." Music therapy, riding therapy and the program at the Parrish, getting sufferers to express themselves through art, are examples of ways to keep minds engaged and slow the progression of the disease.
Braun said they are currently treating about 75,000 people throughout Long Island and 4,000 here on the East End. "By word of mouth, we have created six support groups. We're trying to bring caregivers out here and create a chain of understanding and awareness so that people are not left in the dark, struggling on their own."
Bobbie said her father, in his prime, the "genius who created the Long Island Message Center and Radio Call Company of Long Island," today has been blinded by the disease, incapacitated, bedridden and must be fed by hand. "One of the first questions everyone asks me when I'm going to visit my father, is, 'Does he know you?' I've had to evolve an answer to that over the past six years: 'Yes he does, in his own way.' My understanding of reality is transformed by this disease, because of his peacefulness and his contentedness. When he shows some kind of agitation, he's cared for by love. Alzheimer caregivers are angels on earth and dedicated servants. We at the ADRC seek to provide that for all those in need."
Mary Ann Malack-Ragona, MBA, is Executive Director / CEO of the Alzheimer's Disease Resource Center.
For more information, visit www.adrcinc.org.
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