Editor’s note: This is Part 1 of 2 parts detailing the health crisis looming in Pennsylvania.

Colin Deppen and Juliette Rihl

spotlightPa and public source

Pat Loughney was sleep-deprived and panicked as he dug a partially eaten bar of medicated soap from his wife’s mouth in the narrow confines of their upstairs bathroom. Minutes later, her face swelled and her throat began to close.

At the hospital, Pat explained to the staff that Candy had Alzheimer’s disease and her condition had been deteriorating.

Run-of-the-mill forgetfulness had progressed to a dizzying string of misplaced cars, wandering incidents, locks being placed inside their home near Pittsburgh, and Pat staying awake at all hours to make sure his greatest fears weren’t realized.

There were moments of relative clarity along the way, too.

Alzheimer’s

“Alzheimer’s is like a floor lamp with a loose light bulb on a creaky floor,” Pat recalled a physician telling him. “Every once in a while there’s a connection.”

But things kept trending worse, until that September night in the hospital when Pat knew Candy needed more care than he could give. After two days in the ICU, his wife of nearly 40 years - real name Alice, playfully nicknamed Candy because her maiden name is Barr - would leave their home for a long-term care facility in Monroeville.

She did so in the thick of the COVID-19 pandemic, a public health emergency that tore through similar facilities across Pennsylvania. The result laid bare chronic oversight failures in homes that account for half of all COVID-19 deaths statewide.

Medical professionals and memory care experts say the chaos confirmed what they already knew: Pennsylvania, one of the nation’s most elderly states, is unprepared for another kind of public health emergency - this one with no vaccine, few preventive measures, and its own set of dire economic implications.

Hundreds of thousands

There are 280,000 Pennsylvanians over the age of 64 currently living with Alzheimer’s disease, the most common cause of dementia, and another 100,000 with related disorders - Parkinson’s disease dementia, Lewy body dementia, and vascular dementia, to name a few.

The Alzheimer’s figure alone is expected to reach 320,000 by 2025 and swell exponentially from there as the baby boomer generation, one of the largest in U.S. history, continues to age.

The longer cases progress, the more likely they are to require full-time supervision that is incredibly costly and already in high demand.

Right now, few state-licensed eldercare facilities have dementia-specific accommodations, with a maximum capacity of 17,157 patients between them.

With hundreds of thousands of cases and the potential for half to be moderate or severe, according to new research, the math favors a growing wave of “under-supervised” cases and cases managed by loved ones, like Pat Loughney, in sometimes excruciating fashion.

“If you want to talk about the future and people with Alzheimer’s, I think you’re going to see the need for more and more of these kinds of places where people can get the specialized care they need,” said Diane Menio, executive director of the Philadelphia-based Center for Advocacy for the Rights & Interests of the Elderly.

Experts and advocates give the state a near-failing grade in its efforts to prepare for the coming crisis in dementia care, a PublicSource/Spotlight PA investigation found. An official state action plan has sputtered for years, high costs could push families and facilities to the brink, and those serving on an unfunded state task force concede time is running out - and fast.

“This is a public health crisis,” said Jen Ebersole, the director of state government affairs for the Alzheimer’s Association of Greater Pennsylvania, “and Pennsylvania is not addressing it like a public health crisis.”

A need for beds and staff

In Pennsylvania, less than a third of licensed personal care homes and assisted living facilities have dedicated dementia units, with a 10,595-person combined capacity.

Less than a fourth of the state’s separately licensed skilled nursing facilities, or nursing homes, have “Alzheimer’s disease beds,” 6,562 between them.

“We do hear time and time again that it’s just such a challenge to find space,” Ebersole said.

The reason there aren’t more dementia-dedicated spaces already, according to multiple sources, is a mix of economics and the slow evolution of eldercare as attitudes toward, and expectations of, dementia services change.

But limited space in facilities is just one part of the problem.

Specialists are wildly outnumbered, too, a dynamic not unique to Pennsylvania.

“There aren’t more than 1,500 board-certified geriatric psychiatrists for the whole U.S. population now,” Joel Streim, a Philadelphia-based geriatrician and professor of psychiatry at the University of Pennsylvania, said. “To put that in context, there are more than 6 million Americans with Alzheimer’s” who are older than 64.

Perhaps even more pressing, though, is a lack of trained staff who directly care for patients in an industry noted for extreme turnover even before the pandemic prompted resignations.

“If you could make more money in Walmart or fast food, why would you come work in a nursing home and, you know, toilet people and take care of their most basic needs?” said Kim Jackson, a Service Employees International Union-affiliated nurse with decades in the field.

Setting a higher minimum wage for direct-care workers, like nursing home staff, could curb turnover and give patients more continuity in their care, said state Rep. Dan Miller, D-Allegheny, who hosts an annual disability and mental health summit.

But the idea is likely to draw pushback from the homes themselves, many corporate-owned, if the response to a recent proposal from the Wolf administration is any indicator. That plan would require nursing home staff to spend more time daily with patients and, in turn, nursing homes to hire more workers.

“In our current operating environment, this proposed regulation is an unattainable, unfunded mandate that will cripple an essential component of the long-term care continuum,” said Zach Shamberg, CEO of the Pennsylvania Health Care Association, an industry group representing more than 400 facilities statewide.

Jackson said she was the lone nurse responsible for 40 residents before the pandemic prompted a spate of staff departures and unexpected absences. (Fearing repercussions, she asked that her facility’s name not be used.)

She said she’s still coping with the strain of the past year while dealing with a profound and lingering case of “compassion fatigue.”

“I had people dying without their families.”

Spotlight PA is an independent, nonpartisan newsroom powered by The Philadelphia Inquirer in partnership with PennLive/The Patriot-News, TribLIVE/Pittsburgh Tribune-Review, and WITF Public Media. Sign up for our free newsletters.