'Alzheimer's tsunami' threatens as Medicaid rules tighten

The government program pays for half the nursing home residents in Iowa

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Several times a week, Lou Stepanek drives to the Hiawatha Care Center to spend time with someone who hasn’t seemed to recognize him for a decade: his wife.

“We knew it was a fatal disease,” Lou, 88, a retired police captain, said of his wife’s Alzheimer’s diagnosis. “But what does that mean?”

The Cedar Rapids man has nearly depleted the couple’s life savings as Marie struggles with Alzheimer’s, one of 64,000 Iowans estimated to be living with the disease, a type of dementia that affects memory, thinking and behavior.

The aging population is fueling what some experts call an “Alzheimer’s tsunami” for which Iowa, like the rest of the nation, is ill prepared. Unless a cure is found, by 2025 an estimated 7.1 million Americans age 65 and older could have Alzheimer’s, almost a 35 percent increase, according to the Alzheimer’s Association. Iowa’s 65-plus population is above the national average.

But instead of preparing for the onslaught, Iowa and other states have begun tightening Medicaid, the only government program that pays for nursing home care, in ways that increase the burden on those with Alzheimer’s and their loved ones.

Many states are likely to further cut Medicaid if Congress ultimately passes a repeal of the Affordable Care Act.

Marie has spent nearly 14 years at the Hiawatha Care Center after being diagnosed with Alzheimer’s 25 years ago.

Until two years ago, Lou paid for her care from savings. As the couple’s assets dwindled, she became eligible for Medicaid, which covers the nursing home expense.

Lou described Marie, 91, as a good woman who took care of the house and their five children, including a son born with Down syndrome who lived to be 47 with her support.

After Marie was diagnosed, Lou tried to take care of her at home, but her condition worsened.

As with his unanswered question about what an Alzheimer’s diagnosis truly means, Lou wonders what the next step will be with her meals. He trusts in a higher power to answer.

“It’s all in God’s hands,” he said.

If Medicaid stopped paying, he said, “I don’t know what I’d do.”

KEEPING UP WITH MEDICAID

Medicaid, typically seen as the government health insurance program for people with low incomes and those with disabilities, spends about one-quarter of its $4.8 billion annual funding in Iowa for nursing home care. The program pays for half the nursing home residents in the state, the Kaiser Family Foundation reports.

The Alzheimer’s Association calls the disease a triple threat, with growing prevalence, few treatment options and enormous costs.

Medicaid spending in 2015 for Iowans diagnosed with Alzheimer’s totaled $576 million, the group reported, and is predicted to increase almost 34 percent by 2025.

The Iowa Department of Human Services said $64.3 million was spent in fiscal 2017 just on long-term care facilities for people with Alzheimer’s.

Iowa’s Medicaid numbers reflect the rest of the nation, said Brandon Geib, who until recently was public policy director for the Alzheimer’s Association for the state.

“One in four seniors with Alzheimer’s are on Medicaid, so the potential impact (from proposed cuts) could be pretty drastic,” Geib said, emphasizing that Medicaid, which covers 70 million Americans, is the only government program that covers long-term nursing home stays. Medicare, the program for older Americans, does not.

Medicaid also covers some services that allow Alzheimer’s patients to stay home, which costs significantly less than long-term care facilities.

“I don’t think it’s a stretch of the imagination that (families) would be asked to take a loved one back home” if Congress cuts Medicaid, Geib said. “Typically, nursing facilities are considered the last stop. Sometimes it’s the last choice these individuals are left with, so it’s a scary thought.”

Already, Iowa’s move to a Medicaid system managed by three for-profit companies affects people with Alzheimer’s and their caregivers.

Kathy Horan, vice president of AbbeHealth Aging Services, which operates adult day health centers in Marion, Cedar Rapids and Iowa City, said managed care organizations that coordinate Medicaid recipients’ care have started to decrease the number of days covered at those centers.

Previously, patients could attend five times per week, offering activities for those with Alzheimer’s and allowing caregivers respite time. Now, the insurer might authorize just two days.

The companies also are seeking evidence that day-program patients are making progress.

“But it’s common sense that an Alzheimer’s patient isn’t going to get better,” she said

The strains and responsibilities associated with caregiving force an estimated 15 percent of caregivers to leave their paid jobs, creating a ripple effect on the economy, according to Tim Charles, president and chief executive of Mercy Medical Center in Cedar Rapids. Retirement savings for that younger generation also suffer.

Nationwide, an estimated 15.9 million Americans provide 18.2 billion hours of unpaid assistance to those with Alzheimer’s and other forms of dementia, the Alzheimer’s Association found. Iowa alone has an estimated 135,000.

“It’s the shadow health system,” Charles said.

MEMORIES SHARED NO MORE

A retired accountant, Anne Scherer has been running the numbers to try to determine what the future holds for her and her husband, Alan, 76, who was diagnosed with Alzheimer’s at 68. The two live in West Des Moines, where Anne takes care of her husband at home.

Alan Scherer, former chief financial officer at the Duluth News Tribune in Minnesota, had a long career in finance, but his forgetfulness — misplacing keys or his wallet and repeating stories — became progressively more troubling, his wife said.

After he was diagnosed with Alzheimer’s in 2010, Anne tried to keep up with the tax firm she owned, even bringing Alan to work with her. She gave it up in 2015.

They cannot afford private-pay nursing facilities, which can cost more than $100,000 annually. When Alan finally requires nursing home care, they would spend through their savings and then rely on Medicaid, she said.

“If you look at the end-stage, you couldn’t handle it at home,” she said of the lifting and other daily tasks. “I just don’t know what we’ll do. I had it so planned out.”

Produced by the Iowa Center for Public Affairs Journalism-IowaWatch.org, a nonprofit, news website that collaborated with HuffPost for this report.

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