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In New Jersey, Undercounted Alzheimer’s Cases Spur Legislative Action

Bills seek to increase awareness and training among providers, add disease as secondary cause of death

alzheimers

An estimated 170,000 people in New Jersey suffer from Alzheimer’s disease, but many of these cases are undiagnosed. That number is expected to rise to 210,000 by 2025, and an effort is underway to ensure that these residents aren’t undercounted and don’t receive inadequate care.

Several legislative efforts are seeking to do just that. One bill would ensure that doctors know they can list Alzheimer’s as a secondary cause of death. The goal of another is to make certain that new home health aides receive Alzheimer’s-specific training. A third measure would require hospitals to prominently note on patients’ records that they have the disease so that they are treated appropriately by staff.

While Alzheimer’s ranks as one of the leading causes of death in New Jersey (different lists put it anywhere from fifth to seventh), it may actually be undercounted, according to Linda Coppinger, executive director of the Alzheimer’s Association’s South Jersey regional office.

“If they died from exposure from wandering, or choking if they can’t eat or drink properly,” doctors may not be accurately recording this, Coppinger said at a hearing on S-2961/A-4188, the bill that focuses on Alzheimer’s as a secondary cause of death.

Assemblyman Carmelo G. Garcia (D-Hudson) introduced all three bills. He said in a statement that studies have found that the true number of deaths attributed to Alzheimer’s and related disorders may be six times as high as the number officially recorded.

Sen. Richard J. Codey (D-Essex and Morris) said that the stigma related to the disease is so pervasive that some doctors may be “embarrassed” to list that Alzheimer’s contributed to the deaths of their patients.

Kristine Allen, president and cofounder of the Act Now Foundation for Alzheimer’s Awareness and Education, noted national research indicating that as many as half of all people with Alzheimer’s are never diagnosed with the disease.

Alzheimer’s is the only cause of death among the top 10 nationally and in New Jersey that has no known prevention, cure, or progress-slowing treatment, Allen noted. She said the bills would help address the stigma associated with the disease, adding that nearly everyone she interacts with would rather be diagnosed with cancer than Alzheimer’s.

“No one wants to talk about what I like to call the A word,” she said of Alzheimer’s.

Act Now Foundation Executive Director Karen Lopez said that all of the bills are aimed at increasing public understanding of a pervasive health problem that’s inadequately understood. She said her own mother likely had the disease for a decade before she was diagnosed six years ago. She’s since lost the ability to walk, talk, dress herself, bathe herself, chew, swallow, or recognize any family members or friends.

“This disease is devastating to everyone around” the person, Lopez said. “We are sounding the alarm not to scare people, but just to give them” knowledge.

Coppinger also testified in support of S-2959/A-4100 -- the bill aimed at ensuring that hospitals note Alzheimer’s diagnoses prominently. She said that patients were less likely to wander away from hospitals if staff members were aware that they had the condition. Allen said it could also lead to a reduction in overmedication of patients who become agitated or aggressive.

In addition, not all home health aides receive training related to the specific concerns of Alzheimer’s patients: S-2960/A-4331 would require that they learn the psychological, social, and physical needs of patients with Alzheimer’s. The bill would also mandate that they know the safety precautions that should be taken for these patients, as well as how to communicate with them. The training would be required when aides are first certified, as well as the first time that they are recertified after the bill is enacted.

Coppinger said that this would make it easier for families to keep their loved ones with Alzheimer’s in their homes longer.

The training proposal prompted concern from Senators Robert M. Gordon (D-Bergen) and Robert W. Singer (R-Monmouth and Ocean), who said that increasing the training requirements for home health aides could unnecessarily bog down their certification, which has been hampered by staff shortages at the state Board of Nursing, the agency that oversees this process. However, the problem may have been alleviated in the state budget, which allocated $250,000 for additional board members.

Singer said that there’s a strong need for more home health aides -- something he’s seen firsthand as a member of the Ocean County Board of Health.

“These people are at the low end of the pay scale,” Singer said. “I hate to say it, but some of them are just above the poverty level.”

Home Care & Hospice Association of New Jersey President and CEO Chrissy Buteas said she welcomed working with the legislators on the training bill. She said she wanted to ensure that the training that’s currently provided by some home-health organizations is recognized as sufficient under the legislation. She added that the entire curriculum required by the Board of Nursing should be reexamined.

Codey also sponsored a resolution, which was passed by both houses of the Legislature without opposition, calling on Congress to double Alzheimer’s research funding, with a goal of reaching $2 billion annually. Codey noted that Alzheimer’s diagnoses are increasingly rapidly “and it’s only going to get worse” as the population ages.

“If this disease were something else, like cancer or heart disease, there’d be a march on Washington” demanding more research, said Codey, whose father died of Alzheimer’s.

The Senate passed all three measures unanimously. The Assembly versions have been referred to the Assembly Health and Senior Services Committee.

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