Alzheimer’s Patients Face Flurry of Fees While Waiting for Specialized Care

The costs for reminders to eat, shower or take medication can be staggering

Lengthy waiting lists for rooms for Alzheimer’s patients are forcing caregivers to put their loved ones in less specialized facilities—which often levy additional fees for every extra service required to keep those vulnerable residents safe.

Does the patient need a daily prompt to take her medication? Tack $25 on to the monthly bill. Does he need to be reminded to go to lunch and dinner? That’ll be another $75 a month. Checking blood sugar might cost $55 a month. Double that if the staff is also in charge of injecting insulin.

Showering. Dosing out medication. Clipping toenails. It all carries a fee.


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“If they need extra help, there’s an additional charge,” said Sanford Finkel, an expert on aging at the University of Chicago. And because Alzheimer’s is a disease that can devastate for years, the cost can be staggering.

“The bills for all of this care have been astronomical,” said Shirene Broadwater, who lives near Lakeland, Fla., and looks after her 89-year-old grandmother, who has Alzheimer’s.

Broadwater has had to move her grandmother twice, seeking better care and a reprieve from the challenge of having to constantly check up on it.

Charges begin to pile up

Relatives often try to place their loved ones in a dedicated facility that specializes in treating patients with dementia. Those beds cost far more than a typical assisted living facility —up to several thousand dollars a month more, depending on the quality and location. But that’s typically an all-inclusive package.

When there aren’t any available rooms in specialty facilities, Alzheimer’s patients often end up in assisted living facilities that only cover the basics—food and shelter. In most facilities, any additional need comes with a price tag.

And patients with dementia have many additional needs.

“It would get pretty expensive pretty quickly,” said Maryann Crenny, who manages several senior health care facilities in New York as director of operations at the FilBen Group. “You’d essentially be paying for round-the-clock care.”

Crenny said it could end up being more expensive to keep a loved one with severe dementia in an assisted living facility than in a specialized home in some cases.

One reason: Unlike “memory care homes” that specialize in patients with dementia, assisted living facilities may have just a handful of residents with those needs, so they’re not equipped to handle them efficiently and cost-effectively. More specialized homes, by contrast, are “going to have some economy of scale,” said Lauren Travers, who works on senior housing issues at Caring.com, a site that helps connect seniors and caregivers with residential facilities nationwide.

The federal Administration on Aging estimates senior housing prices will nearly triple by 2037. And at the same time, the population in need of memory care continues to grow—5.3 million Americans have Alzheimer’s disease, with that number expected to spike to 16 million by 2050.

In South Bend, Ind., Robin Good had to place her 93-year-old mother in an assisted living facility when she could no longer care for herself.

“It became evident quite quickly she needed more assistance,” said Good, a practice manager for a medical group. Her mother needed help getting dressed, bathing, and feeding herself, and all that carried extra charges. Good’s mother passed away in late February.

A cheap pill runs a high bill

Michael Ferry, also of northern Indiana, had the same frustrations while caring for his father with dementia. He visited five times a week. Most days, he brought his father Communion. But he still had to pay many extra fees for services he couldn’t provide on his own, as well as for supplies such as diapers, medical sponges, and gauze.

Even making sure his father had his medications cost extra, since the facility required families to order both prescriptions and over-the-counter drugs through a specific third-party pharmacy.

Ferry, who runs an Ohio-based consulting company for physicians, said that he was charged $10 a pill for a heartburn medication that cost $2 per pill at the corner drug store.

“I’d love to be able to just buy it over the counter and take it in and hand it to the nurse, but they don’t allow that,” he said. His father passed away in April.

The best things a family can do to prepare for aging care: buy long-term care insurance and get on a waiting list before a room is urgently needed, experts said.

“You really need to start researching as soon as you get the diagnosis,” Travers said. “Because it’s only gonna get worse.”

Republished with permission from STAT. This article originally appeared on July 25, 2016

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