Explainer: Alzheimer’s NJ Goes Solo But Still Offers Same Services

Nonprofit split from national umbrella group because it feared losing control of assets and programs

alzheimer's outline
The website and graphics are all new and the name has been revised. But officials insist Alzheimer’s New Jersey is the same organization that memory-loss patients and their families here have trusted for more than three decades.

Focus on New Jersey: The nonprofit entity — which split from the national Alzheimer’s Association in December, one of more than half a dozen chapters to have done so recently — will continue to provide the programs, referrals, and other resources that Garden State residents have come to depend on, according to Ken Zaentz, president and CEO of the new group. But now the money the Alzheimer’s New Jersey raises through annual walks and other events will be reinvested in ways that more directly impact state residents.

Effects of the disease: Alzheimer’s disease is a degenerative brain disease that can affect memory, language, and problem solving, and make it difficult to complete daily activities. Eventually patients can lose the ability to walk and even swallow, relegating them to bed with a need for round-the-clock care.

There is no cure for Alzheimer’s and no effective way to slow its progression, Zaentz explained. While researchers at Rowan University have had early success with a blood test designed to detect early-onset Alzheimer’s and other conditions, doctors traditionally depend on tests designed to rule out other conditions and zero in on the possible causes of memory loss.

Number of patients: There are an estimated 170,000 Alzheimer’s patients over age 65 in New Jersey and experts anticipate the number will rise to 210,000 within the coming decade. When considering the impact on close family and caregivers, the disease touches more than half a million residents, Zaentz said.

The disease is a particular concern in a state like New Jersey, with an aging demographic, Zaentz said. A recent survey conducted by Fairleigh Dickinson University’s PublicMind and paid for by Alzheimer’s New Jersey found two-thirds of state residents know someone who has the disease or are suffering themselves. “While we know it’s a huge problem nationally and we know it’s a huge problem for our state, given the demographics,” Zaentz said, “being able to quantify that (public understanding) with some numbers was really the next logical step.”

Why group went solo: Zaentz and his colleagues hope the survey will help set the stage for a fresh outreach effort by Alzheimer’s New Jersey, which – like chapters in New York City, Long Island, and two dozen other locations – defected from the national organization when that office adopted a merger plan in October. The plan reportedly called for all 81 affiliated chapters to combine as one national entity and local leaders feared they would lose control over their own assets and programming.

“Donors want to know where their money is going,” Zaentz said, and the preference is for programs that have a local impact.

Range of services: Alzheimer’s New Jersey will continue to raise money through a variety of walks traditionally scheduled for the fall, an annual gala, and other community-driven events. This supports public education programs and helps fund work at county offices on aging, Zaentz said. The group also provides resources on elder law; gives patients and families information on the disease, caregiver resources, and clinical drug trials; and operates a free, confidential helpline staffed by experts: 888-280-6055.

“We are definitely the local resource in our state for people with this disease,” Zaentz said. “We want people to know they don’t have to face this alone.”

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