As dementia rates increase, experts warn hospital emergency rooms are underprepared

AURORA, Ill. — At her mother's home in Illinois, Tracy Balhan flips through photos of her dad, Bill Speer. In one picture, he's smiling in front of a bucket of sweating beers and wearing a blue T-shirt that reads, ''Pops. The man. The myth. The legend.''

Balhan's father died last year after struggling with dementia. During one episode late in his life, he became so agitated that he tried to exit a moving car. Balhan recalls her dad — larger than life, steady and loving — yelling at the top of his lungs.

His geriatric psychiatrist recommended she take him to the emergency room at Endeavor Health's Edward Hospital in the Chicago suburb of Naperville because of its connection to an inpatient behavioral care unit. She hoped it would help get him a quick referral.

But Speer spent 12 hours in the emergency room — at one point restrained by staff — waiting for a psych evaluation. Balhan didn't know it then, but her dad's experience at the hospital is so common it has a name: ER boarding.

One in six visits to the emergency department in 2022 that resulted in hospital admission had a wait of four or more hours, according to an Associated Press and Side Effects Public Media data analysis. Fifty percent of the patients who were boarded for any length of time were 65 and older, the analysis showed.

Some people who aren't in the middle of a life-threatening emergency might even wait weeks, health care experts said.

ER boarding is a symptom of the U.S. health care system's struggles, including shrinking points of entry for patients seeking care outside of ERs and hospitals prioritizing beds for procedures insurance companies often pay more for.

Number of hospital beds at issue

For older people with dementia, boarding can be especially dangerous, Chicago-based geriatric psychiatrist Dr. Shafi Siddiqui said. One research letter published in June 2024 in the Journal of the American Medical Association looked at more than 200,000 patients and found long ER stays could be linked to a higher risk of dementia patients developing delirium — a temporary state of mental confusion and sometimes hallucinations.

''People need to be enraged about (boarding),'' said Dr. Vicki Norton, president-elect of the American Academy of Emergency Medicine.

National emergency physician groups have lobbied for years to keep boarding under control. While they've made some progress, nothing substantial has changed, despite concerns that it leads to worse patient outcomes.

Dr. Alison Haddock, president of the American College of Emergency Physicians, said that's because boarding is a failing of the entire health care system that manifests in the ER, so solving it demands a systemic approach.

In 2003, there were 965,000 staffed hospital beds compared to 913,000 in 2023, according to the American Hospital Association. And another JAMA research letter published in February shows there are 16% fewer staffed beds in the U.S. post-pandemic.

The ones available may be prioritized for ''scheduled care'' patients who need non-urgent procedures, like cancer care or orthopedic surgeries. Insurance companies pay hospitals more for those surgeries, Haddock said, so hospitals aren't likely to move patients into those beds — even as emergency rooms fill up.

Where can people go?

Though long stays in the emergency department are common, there isn't good data that tracks the extremes, emergency medicine experts said.

The Centers for Medicare and Medicaid Services recently ended a requirement that hospitals track the ''median'' wait times in their emergency departments. An advisory group that develops quality measures for CMS recommended that the agency try to more accurately capture long emergency department stays. That measure has recently been submitted to CMS, which can choose to adopt it.

Nancy Fregeau lives in Kankakee, Illinois, with her husband Michael Reeman, who has dementia.

Last year, she said he visited the Riverside Medical Center emergency department several times, often staying more than four hours and in one case more than 10, before finally getting access to a behavioral care bed. Riverside declined to comment on Reeman's case.

During long waits, Fregeau doesn't know what reassurance she can offer her husband.

''It's hard enough for anyone to be in the ER but I cannot imagine someone with dementia being in there,'' she said. ''He just kept saying ‘When am I going? What's happening?'''

Since November, Reeman has been going to the MCA Senior Adult Day Center in Kankakee. Fregeau said Reeman treats the day center like it's his job, offering to vacuum and clean, but comes home happier after having time around other people and away from the house.

With fewer places for patients to go after being discharged, hospital beds are being used for longer, exacerbating the boarding problem. It's becoming more difficult to get a specialty hospital bed, especially when patients' dementia causes aggression.

That was the case for Balhan's father, who became increasingly agitated during his ER stay. Hospital staff told Balhan the behavioral care unit wasn't taking dementia patients, so Speer was stuck in the ER for 24 hours until they found a behavioral health facility, separate from the health system, that would take him.

While the hospital couldn't comment on Speer's specific situation, Endeavor Health spokesperson Spencer Walrath said its behavioral care unit typically admits geriatric psychiatry patients, including those with dementia, but it depends on factors like bed availability and the patient's specific medical needs.

Balhan feels that the U.S. health care system failed to treat her dad as a human being.

"It didn't feel to me like he was being treated with any dignity as a person,'' she said. ''If anything could change, that would be the change that I would want to see."

AP data journalist Kasturi Pananjady contributed to this report.

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