L

engthy 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.

advertisement

“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.

Robin Good
Good holds a snapshot of her with her mother, Jean, taken in the early 1990s in California. Lucas Carter for STAT

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.”

Newsletters

Sign up to our Weekend Reads newsletter

Please enter a valid email address.

Leave a Comment

Please enter your name.
Please enter a comment.

  • My dad has Alzheimer’s and we are looking for a nursing home to take him into so that he can get the care that he needs. Like you said it is getting harder and harder to find places to take our loved ones because of increasing sickness and a lack of facilities to help the people in need. However, because these people are so important to us, I personally am willing to pay a little more for my father to get the treatment that he needs and deserves so that he can be happy and at peace. http://www.altaridge.com/sandy-community/

  • I appreciate that Travers stated it is a good idea to begin the search as soon as you get the diagnosis. Not only are there long waiting lists one needs to be aware of, there are a lot of extra steps and costs that need to be assessed. Alzheimers runs in my family and my grandma is getting old. I will keep this in mind for the years to come. Thanks.
    http://www.havencarenm.com/home.html

  • Around 5.4 million of Americans are living with Alzheimer’s right now. Taking care of patients with Alzheimer’s costs around $215 billion. This is considered as the most expensive diseases today.

    The cost will surely pile up and will most likely exhaust your entire savings and retirement income. So what’s the best way to combat the flurry of fees?

    Buying long term care insurance is the frontrunner as the best option today. It’s not a surprise since it is cost-effective and can also protect your loved ones from financial woes.

    Considering getting a coverage can lift the heavy burden of the staggering cost of long term care and thus can give you peace of mind. It is imperative to get a long-term care insurance since the cost of care continues to rise. It is best to have a plan rather than take a risk and just rely on your savings.

  • I read this article with interest, but am skeptical that all of these charges can be chalked up to either (a) a lack of “economy of scale” or (b) corporate greed. Surely regulation/liability issues play some role in decisions like the use of a single, third-party pharmacy?

  • This is a big problem, but the long term care insurance mentioned in the article as possible preparation for the issue isn’t going to be of much help. I shopped extensively (getting quotes from brokers, listening to sales pitches, etc) for long term care coverage. What we discovered is that long term care insurance is not really insurance, in the way we would normally understand the word. For example, I have homeowner’s insurance with a $2M umbrella. I can know with confidence that if my house burns to the ground it will be replaced, or if someone slips on the sidewalk and sues me I will be covered. Long term care insurance essentially promises to pay X amount of money per day for Y number of days. (You can buy a policy with a capped inflation factor figured in.) After paying premiums for 30 or 40 years, you have no way of knowing whether that X dollars per day will even put a dent in the actual cost of care. Or, how may more days of coverage (until you die) you might need than the policy provides. Its not that the insurance companies are ripping people off. Most insurers have gotten out of this business, actually.

  • NO! its better to spend a trillion bucks on a jet that doesnt work, and isnt needed. it better to give back billions to people like trump who need their private jets, and 5 mansions, with private islands. if these ladies were in germany, all would be covered, and care is excellent. usa, is the worst.

  • There could be no satisfying explanation for a $75 reminder or for $5k per day cost of staying in a hospital. What happend to US free market econony? Where are all the competitors with $70 reminders and hospitalization at $1k per day

Sign up for our Biotech newsletter — The Readout

Your daily guide to what’s new in biotech.