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Lou Stepanek visits his wife, Marie, at the Hiawatha Care Center in August. She has Alzheimer’s disease and does not recognize her husband.

Cindy Hadish, IowaWatch

CEDAR RAPIDS — 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 more than a decade: his wife.

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

Marie Stepanek, 91, has spent nearly 14 years at the Hiawatha Care Center after being diagnosed with Alzheimer’s 25 years ago. The couple’s 67th anniversary was in January.

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 progressive type of dementia that affects memory, thinking and behavior.

The aging population is fueling what some health experts call an “Alzheimer’s tsunami” for which Iowa, and the rest of the nation, are ill prepared. 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 slash Medicaid funding if Congress passes Obamacare repeal legislation.

Pacing Medicaid

Medicaid, typically seen as the government health insurance program for people with low incomes or 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, according to the Kaiser Family Foundation.

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 diagnosed 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 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 in their 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.”

Republican Obamacare repeal proposals would end federal funding for Medicaid expansion and then change federal funding for the program as a whole, applying a type of cap to the money states receive. The current system funds states based on actual expenditures, so states get more money as both the number of enrollees and their medical expenses increase.

The GOP plan would all but certainly force states to eliminate benefits, curtail enrollment or cut provider rates, said Tim Charles, president and CEO of Mercy Medical Center in Cedar Rapids, which opened a caregivers center in December 2015 to help address the exploding number of people being diagnosed with Alzheimer’s. Any of those changes would have a particularly devastating effect on Iowa’s rural health care system, where Medicaid populations are higher, he added.

Already, Iowa’s move last year to a Medicaid system managed by three for-profit companies is affecting people diagnosed with Alzheimer’s.

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

Previously, patients could attend five times per week. Now, the MCO might authorize just two days per week.

“So the stress level on the caregiver goes up,” Horan said. That may end up sending patients into a nursing home sooner, at a much higher expense than care at home.

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

“Are they getting better? Is it a medically necessary service?” she said. “But it’s common sense that an Alzheimer’s patient isn’t going to get better.”

‘Sandwich’ caregivers

Caregivers generally are spouses or adult children. Called the “sandwich generation,” adults in their 20s, 30s and 40s are often caring both for their own children at home and a parent, typically while holding down a job.

Kaitlin Scott, 28, of Cedar Rapids, said she never expected to be faced with responsibility for her mother’s health at such a young age.

Cindy Khan, 61, was diagnosed with early onset Alzheimer’s and frontotemporal dementia — caused by progressive nerve cell loss in the brain’s frontal lobes — at age 59.

Scott, Khan’s only child, became the decision-maker for her mother, frequently traveling about two hours each way to Des Moines, where Khan lived, back to Cedar Rapids, where Scott works as a special education teacher.

She hired people to check on her mother and help with errands, “but it got to the point when it was no longer safe for her to live in her home,” Scott said.

Her mother couldn’t drive, was not safe to cook in her own kitchen, and had difficulty with daily tasks, such as remembering what to do with a toothbrush. “I had to make the hardest decision: to move her out of her home and put her in a memory care facility,” Scott said.

Some people have asked why her mother didn’t just move in with her, but Scott said she had to consider her husband, as they had been married just a few years when her mother was diagnosed. Plus, because of her work schedule, Scott often would be unavailable.

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 Charles, at Mercy Medical Center. 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, according to the Alzheimer’s Association. Iowa alone has an estimated 135,000.

Memories lost

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 age 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.

When he left a carton of milk in a cabinet rather than the refrigerator, she knew something was wrong.

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.

“It was not what I wanted to do,” she said of retirement. “But I became a caretaker, and that’s No. 1 — making sure every moment we live in has meaning for him.”

The two still go bowling, to movies and to baseball games — Alan coached their three sons as youths. They sing together and attend programs, such as the “Memory Cafe” through the Alzheimer’s Association and WesleyLife, where participants share experiences and laughs.

Some people ask why she takes her husband places he won’t remember.

“People say it’s not remembered, but I remember,” she said.

This story was produced by the Iowa Center for Public Journalism-IowaWatch.org, a nonprofit, online news Website in collaboration with HuffPost.Freelance journalist Cindy Hadish is an Iowa native and experienced health reporter. Find her on Twitter: @HomegrownIA and on her website: HomegrownIowan.com

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