The expensive cost of caring for Alzheimer's patients

Charles Tang, 84, Manhattan Takes care of his

Charles Tang, 84, Manhattan
Takes care of his wife, Amy, 76, at home
Until recently, Charles Tang had enough confidence in his wife Amy’s memory that he would let her walk by herself the short distance to the adult day program in their neighborhood that she had been attending for several years. But when she went missing for more than two hours one day, Tang started following his wife to make sure she didn’t get lost. It’s just one of several new duties that Tang struggles with on a daily basis. He has had to learn to cook and make sure his wife washes and changes her clothes, all while keeping her from becoming agitated. If he were younger, it would be easier to pick up these new habits, he said, but at his age, it’s been difficult. “To serve her, it’s lots of stress,” Tang said. “Sometimes I can hardly take it. She’s become an entirely different person. It’s stressful to deal with her." (Sept. 17, 2009) (Credit: Newsday / J. Conrad Williams Jr.)

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Paying for Care

The costs of long-term care for Alzheimer's patients can easily deplete even the deepest bank account. Because the disease lasts so long - anywhere from two to 20 years, depending on the stage at diagnosis - and because the type of care needed often falls beyond the scope of government health care programs, families find themselves scrambling to find the money needed to maintain care for their loved one.

Care is often divided into three groups: at-home care, assisted living facilities and nursing facilities. According to the Alzheimer's Association, in 2008, the average cost of home medical care was $144 for an eight-hour day; the average cost of an assisted living facility was $36,372 a year; and the average cost of a nursing facility was between $69,715 to $77,380 a year. The average cost of adult day services, often utilized by those attempting to keep their loved ones at home, was $64 a day.


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On Long Island, those costs can run even higher, according to elder law attorney Vincent Russo. If someone needs 24/7 care, the average annual cost today on Long Island is $75,000, he said. Local nursing home costs are some of the most expensive in the country, he said, running on average between $10,000 and $14,000 a month.

"Most people cannot afford to privately pay out of their income," Russo said. "They're going to start spending their assets down and at some point they're going to lose all their assets. And that's the sad story for many."

Long-term care insurance is a lesser-known option for homecare, but one that can be both expensive and limited, some caregivers said. Russo said he is finding more people looking into long-term care insurance these days. "It's becoming more popular in the sense that those who are the boomers in their 50s and 60s who are starting to experience what is happening to their parents are looking at long-term care insurance as a way of protecting themselves," he said.

Many individuals are unaware that Medicare does not pay for long-term care. The federal program aimed primarily at those over 65 years old, covers mainly hospital and doctor visits as well as limited post-hospitalization care. But it does not cover assistance with the activities of daily living, such as bathing, dressing and taking the patient to the toilet.

"The problem with dementia is what's needed by the person who's diagnosed and the families is what's called custodial care," said Barbara Vogel, program coordinator for the Neuwirth Memory Disorders Center at Zucker Hillside Hospital in Glen Oaks. "They don't have medical needs . . . but just because it's not a medical need doesn't mean it's not necessary. These guys cannot care for themselves in a safe way. And if we would take care of their custodial needs, I think that in the long run, we would eliminate a lot of the medical issues that we deal with later on."

Medicaid, which is funded by both state and federal governments - and in New York by counties as well - will pay for long-term care at home or in a nursing home or, in a limited way, assisted living facility. Medicaid will also pay for medical model - but generally not social model - adult day services. But the program was designed for low-income individuals and there are many complex restrictions on who can qualify for the coverage.

"We look at [people who have] low income, [they] has great coverage, we look at people with financial resources, substantial resources, they have no issues, they can handle what gets thrown at them," said Mary Ann Malack-Ragona, executive director and chief executive of the Long Island chapter of the Alzheimer's Association in Ronkonkoma. "Then you've got that whole block of people in the middle who are not eligible for anything."

With Medicaid for home care, someone comes into the home and makes an assessment of how many hours of care they feel an individual needs. By and large, Russo said, the counties will say that a person doesn't need 24/7 care, although families can appeal. "It's a budgetary-driven thing," Russo said, and the counties struggle under this burden. New York is one of only a handful of states that has counties paying for part of Medicaid.

The general rule for acceptance into Medicaid, he said, is that you cannot have more than $13,800 in your name if you are single. If you own your home and it's worth under $750,000, then the home is generally exempt from that rule. But, Russo said, when you pass away, Medicaid will look to get reimbursed by putting a claim against the house.

There are also income restrictions. A single person cannot have an income of more than $767 a month (for senior citizens it is $787). If you make more than that, Russo said, Medicaid mandates you spend the rest on care. In New York, Medicaid also has an initiative called the Long Term Home Health Care Program, also known as the Lombardi program, which provides at-home care for those who would qualify for nursing home care.

Nursing homes have another set of Medicaid rules and there is a five-year look-back period for the transfer of assets. In assisted living facilities, only a small amount of beds, and a limited amount of services are Medicaid-eligible.

"The reality is when they created these rules they were rules made at the national level and maybe $100,000 in Mississippi might be a lot of money but $100,000 on Long Island isn't," Russo said.

Russo said these issues are not being addressed in the current debates over health care reform and that change is needed across the board on how to handle long-term care.

"I don't really see a distinction between someone getting their heart surgery covered under Medicare but yet if they have Alzheimer's they don't get care," he said. "No one picks their disease. It happens to us and we discriminate right now against people with the wrong disease under the Medicare program."

>>MULTIMEDIA: Click here to see videos, interactive graphics, more stories of Alzheimer's patients and caregivers, timelines and more

>>RESOURCES: Click here to search our guide for Alzheimer's groups, topics and Web sites

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