Alzheimer’s Advocate
On the frontlines, fighting for better care and understanding
By Deirdre Donovan
Posted by West Side Spirit on October 9, 2009 · View Comments
Lou-Ellen Barkan knows better than most what an incredible resource Jed Levine is.
Barkan, who’s been president and CEO of the New York City Chapter of the Alzheimer’s Association since 2004, said she was immediately impressed by Levine’s breadth of knowledge of the disease. They have worked together for more than five years, and she considers Levine, who’s the chapter’s executive vice president, an outstanding resource.
“He has a perspective that is a combination of common sense and compassion, and also a recognition of the reality,” Barkan said. “That is a very hard balance, and I think he does it absolutely brilliantly. Even the leading scientists who are doing the most important research in this country in this area, they want Jed’s perspective.”
Levine champions advocacy activities like the 21st Annual Memory Walk at Riverside Park, scheduled this year for Oct. 25. It’s a fundraising event in which families come together to honor relatives with the disease, or the memory of someone who has died.
Jed Levine, Alzheimer’s Association
Though presently there is no cure for Alzheimer’s, Levine is committed to improving the quality of care to those affected by the disease.
“Many people think that Alzheimer’s disease is just memory loss, but it’s much more than that,” he said. “It really affects all cognitive functions and the ability to take care of oneself, and to manage oneself.”
An Upper West Sider for 30-plus years, Levine, 56, lives with his longtime partner. But he often travels on behalf of the New York City chapter, and has presented at major conferences in Washington, D.C., Spain and Canada.
When he arrived at the organization in 1990, Levine worked to develop an innovative initiative called the “Wandering Safety Program,” which served as a prototype for the National Safe Return Program.
“I was asked to develop a program that would address the issues of identifying people who were at risk for wandering,” he said. “I was working with the police and emergency responders on a simple program that could be run 24 hours a day.”
Levine’s maverick program was a success and it sparked public interest in the disease. With funds from the Helmsley Foundation, he became the driving force that propelled the project forward.
Levine believes that Alzheimer’s will be the leading public-health crisis of the 21st century, largely because of the aging baby-boom generation. No doubt he will remain on the frontlines, through speaking engagements, co-authoring articles, introducing model programs to other chapters or simply talking with compassion to people affected by the illness. Levine clearly grasps the key issues and the caregiver’s difficult role of witnessing a loved one suffer from the disease.
“It is like mourning the person who was, but the individual is still there,” he said.
However grim Alzheimer’s is, Levine points out that there are ways of coping with cognitive lapses.
“There are many definitions of hope,” he said. “And the hope is really in that you can minimize the suffering as much as possible and provide a good quality of life to that individual who is diagnosed.”
