News and analysis
December 02, 2015

Alzheimer’s Association May Lose More Chapters

BRAD DOHERTY/The Brownsville Herald/AP Images

Monday’s decision by the New York City chapter of the Alzheimer’s Association to break away from the national association raises the possibility of other defections in the coming weeks.

The national board of the association has asked each of its 54 independent chapters to pass a resolution by January 15 expressing their desire to consolidate into a single organization under the national umbrella. Many chapters have balked at the merger, however, and some may follow New York’s lead and strike out on their own. Additional departures could be announced this week, according to one source familiar with the thinking of some independent chapters but who asked not to be identified.

The future structure of the Alzheimer’s Association has been a subject of hot debate all fall. The national board of the association voted unanimously in October to consolidate despite strong opposition by some independent chapters, including the one in New York City. Only 27 — exactly half — of the independent chapters voted in favor of the consolidation in September, before the national board vote.

Big Chapters Balk

The consolidation plan has been most controversial among larger chapters with significant reserves and substantial local programming. The New York City chapter, with a $10 million budget and net assets of $8.1 million, sent roughly $400,000 to $500,000 a year to the national association’s Chicago headquarters under a shared fundraising plan enacted in 2009, according to Lou-Ellen Barkan, the chapter’s president.

Like some other independent-chapter presidents, Ms. Barkan says, she was "dismayed" to see spending on Alzheimer’s research decline at the national association even as it took in more money from local chapters.

But she says the New York chapter could have lived with the status quo. The chapter broke away, she adds, because it feared that that consolidation would hurt local services and fundraising. The New York organization staffs its own help line with people familiar with services available locally. That service would suffer, Ms. Barkan says, if the national group routed all inquiries to a call center in Chicago.

Current local board members have given or helped raise $17 million for the New York chapter, she says. Under the national association’s plan, those members would lose their fiduciary responsibilities and serve in an advisory capacity, a reduced role that wouldn’t appeal to them. "They’ve invested in our organization," Ms. Barkan says. "When you’re invested, you want to have some say in the outcome."

Stewart Putnam, chairman of the board of the national association, says he still believes a single unified organization will allow the association to work more quickly and effectively to combat a fast-growing disease that affects about 5 million people in the United States.

"I strongly believe that the vast majority of the [remaining] 53 independent chapters will vote to become part of the unified organization," Mr. Stewart says.

He says it’s too early to discuss the association’s plans for operating in New York City but adds that the association will have a presence "in all parts of the country."

Fundraising Confusion

Founded in 1980, the Alzheimer’s Association peaked at 221 chapters in 1993 and has been consolidating ever since. Twenty-seven formerly independent chapters had come under the national umbrella before this fall’s votes on becoming a single charity.

Four independent chapters, not counting New York City, have left the association in the past nine years, Mr. Putnam says.

One of those, now called Alzheimers North Carolina, left in 2009 due to frustration at the high fees it was paying to the national association, says Alice Watkins, the group’s executive director.

Ms. Watkins says she only regrets that the chapter's decision to separate from the national association was made too quickly. Before her organization had a chance to explain the change to major donors, the national association was already reaching out to them, she says.

That led to some fundraising challenges, but "it’s beginning to turn now," she says. "People are finally realizing that the programs and service have been provided by us all these years."

In New York, Ms. Barkan hopes her organization can maintain its recent steady growth, even if it must compete for donors against the Alzheimer’s Association.

"We’re not going to worry about that," Ms. Barkan says. "Our job is to focus on the work that we do. If we bring in the best people to do the best work, over time we will continue to grow."