Alzheimer’s disease is a terrible scourge. There is no more polite way to put it.
There is a great deal of scientific research on cures, on prophylaxis, and on ways to help its victims, and there is some hope, we are told, but there is nothing much to do for it yet. People who suffer from Alzheimer’s and the people who love them need all the help they can get.
In fact, according to Russell Rothman of Englewood, a past president of the Jewish Community Center of Paramus, “Alzheimer’s is the only one of the top causes of death in America that has no cure.
“There is nothing on the market that helps people already affected by it. Most of the drugs on the market just slowly, or maybe even not-so-slowly, delay the progression of the disease, but there is nothing that cures it.”
Many local institutions, including the Kaplen JCC on the Palisades in Tenafly and the Gallen Adult Day Care program at the Jewish Home at Rockleigh, among many other local institutions, Jewish and otherwise, provide advice and programming for patients and their families. Another source of advice and funding has been the Greater New Jersey chapter of the national Alzheimer’s Association. Now the chapter, newly renamed Alzheimer’s New Jersey, has joined other chapters in leaving the umbrella group in favor of independence.
Mr. Rothman, who has been on the board of the local affiliate and now is Alzheimer’s New Jersey’s vice chair, explained the situation.
“There had been a plan by the national organization to consolidate the chapters and bring them all into one 501c3,” he said. “There used to be about 80 local chapters around the country, and over the years they’ve affiliated more closely. The national has brought in more efficiencies — they had one bookkeeping system, they brought the local 800 hotline to a national location for after hours.”
But the implications of some of those moves, with the loss of local autonomy that accompany it, worry him.
Take the idea of having after-hour hotline calls go to a national office, he said. “We’re concerned about that because of people who are like I was 20 years ago. I called the hotline for help about my mother. I got someone in New Jersey, who stayed on the phone with me for over two hours, answering every question I had, giving me information about books to read, articles to read, doctors to talk to, what type of doctors to talk to, that I should talk to an attorney to get everything in order.”
The hotline is for acute emergencies — “say my mother just tried to burn the house down,” Mr. Rothman said; in that case “they are trained to assist, and if it requires calling the police or the fire department then they hand it off after that” — and for ongoing, slow-burning emergencies as well.
Local knowledge matters, Mr. Rothman said. The hotline “was an invaluable resource that I was able to get to immediately. If I had called after 5 o’clock today” — and people call whenever the need for help becomes overwhelming, and that does not happen only during working hours — “I would have gotten a person who didn’t know the first thing about New Jersey, or about the agencies available here, because New Jersey has a lot of different places and resources to go to.
“I have been on the board for over a decade, and I have very strong feelings about how well the local chapter serves the community,” Mr. Rothman continued. “Having everything under one umbrella” — the national organization — “would mean that the local board would have no fiduciary or decision-making responsibilities. We would just be in an advisory capacity. We truly felt a fiduciary responsibility to the community, to the people of New Jersey. Otherwise, they would donate but have no local voice.
“We felt that it was critical that we decide what programs work in New Jersey. We feel we are a better judge of that than someone in Chicago.”
Now, “40 cents of every dollar goes to national. We feel that if we have 100 percent of the money donated, we’ll be able to reinvest it in more programs, more education, more everything here in the state, which is where the people who donate the money would like it spent,” he said.
New Jersey’s chapter is not the only one to make such a move, Mr. Rothman said; the chapter in New York City and two in California already have done so.
The board did not come to the decision easily, he said. “We argued, discussed, locked ourselves behind closed doors and hashed out every pro and con, and last month we came to the decision to disaffiliate and go it on our own.
“That doesn’t mean that national doesn’t do any good. They do. They increase awareness of Alzheimer’s. They do wonderful lobbying in Washington that resulted in increased spending on Alzheimer’s that was just announced this week.
“There is a lot of wonderful research being done all over the country, all over the world, and particularly in Israel,” he said. “They are thinking out of the box, trying different approaches. About a year ago, I heard a scientist telling us that we will not see a cure for Alzheimer’s in our lifetime. He already has backed down from that, and it’s been less than a year. He’s saying that he is more encouraged now by the fast pace of thinking, and of the way the science is moving.”
To learn more about Alzheimer’s New Jersey, go to alznj.org.