Editor’s note: Part 2 of a two-part series about the dementia health care crisis in Pennsylvania.

Colin Deppen and Juliette Rihl

spotlightPa/ public source

The number of Medicaid and Medicare recipients in Pennsylvania with Alzheimer’s disease or a related dementia disorder has also grown every year since 2015 - from 37,052 to 58,342 in 2020.

Advocates have for years warned that rising rates of Alzheimer’s, the most expensive disease in the world to treat, could bankrupt the programs or, at a minimum, lead to deep cuts.

Families who can’t afford long-term care for Alzheimer’s disease on their own and who demonstrate an urgent need can apply for coverage through Pennsylvania’s Medicaid program, and many do.

Roughly 85% of nursing facility services in Pennsylvania are paid for by the state’s Medicaid program, per the state Department of Human Services. Pennsylvania spent nearly $33 billion on the program overall in 2019, with the federal government covering more than half the cost.

Gov. Tom Corbett in 2013 commissioned a state plan to “define a response” to Pennsylvania’s growing dementia crisis. Among dozens of recommended action items, the plan called for an analysis of negative economic impacts on state programs like Medicaid.

But seven years after the plan was released, that recommendation and many others still haven’t been completed, limiting the state’s preparedness for a massive and fast-moving public health emergency.

Pennsylvania’s Department of Aging notes some progress: Partnerships with stakeholders have been launched along with dementia-friendly programs and an annual statewide forum on the subject.

Still, without adequate funds, some of the more ambitious - and advocates say meaningful - recommendations in the plan have faltered.

The Pennsylvania Department of Aging blames a lack of resources, adding that it’s prioritizing “activities and focusing our existing resources where we can have the most impact.”

Meanwhile, the task force charged with overseeing implementation of the state’s plan has no money at its disposal.

“This is the thing: You can have a plan without a budget, (but) that has no future,” said Dr. Oscar Lopez, director of the University of Pittsburgh’s Alzheimer’s disease Research Center.

Jennifer Holcomb, the chair of the task force and a director of memory support at a nonprofit retirement community in central Pennsylvania, agreed with others who rate the state’s level of preparedness at a “C” or “D,” noting a public health crisis of epic proportions does not have a funding stream to match.

“The problem is now,” Holcomb explained. “It’s today. It’s not coming, it’s here.”

‘Staggering’ costs

Advocates described a public health crisis with a looming financial crisis on top, one with disproportionate impacts on the middle class as well as people of color, who are almost twice as likely as white people to be diagnosed with Alzheimer’s or dementia.

Alison Lynn, a social worker at Philadelphia’s Penn Memory Center, said it’s those in the middle class - making too much to qualify for Medicaid and too little to comfortably absorb the costs of long-term care for a loved one or themselves - that will feel the greatest squeeze.

PublicSource and Spotlight PA talked to nearly a dozen at-home caregivers across the state. Almost all said money was an inescapable concern.

“It’s really scary,” said Cathy M., who acts as a caregiver to a husband with Alzheimer’s at their home in the North Hills outside Pittsburgh. (Cathy asked that her last name be withheld for privacy reasons.)

“My daughter thinks that I should be looking more actively right now, and quite frankly, a lot of these places want an entrance fee of over $200,000,” she said. “And some of the places don’t require an entrance fee but it’s a higher rent. And if your spouse has to go into memory care, that money is used up. And what happens to the remaining spouse?”

Cathy said they’ve looked at nursing homes with price tags between $6,000 and $10,000 a month when dementia-specific memory care services are factored in.

“If he has to go into memory care, we probably have enough money for one year for him. And then what happens to me?” she asked.

Medicare does not cover most long-term care needs, often to the surprise of beneficiaries, giving rise to a long-term care insurance market with low rates of participation, sky-high premiums, and a dwindling number of providers. State-run Medicaid programs will cover long-term care, but only for those who qualify, and only in enrolled nursing homes.

Patient stories

In Mt. Lebanon, Moira Aulbach was one of four siblings who each paid $1,500 per month to keep their mother in an assisted living facility that cost around $6,000 a month total.

Their mother’s long-term care insurance policy had lapsed, and her savings had already been used to cover long-term care for Aulbach’s father, who also had dementia.

Aulbach said her father’s long-term care insurer had refused to cover his stay, believing his condition wasn’t grave enough. Aulbach spent months appealing on his behalf, to no avail.

“It wasn’t a very good long-term insurance policy, but he didn’t know,” Aulbach said of her father. “My parents did save a lot of money, and they tried really hard to make it last, but you just don’t know what’s going to happen.” Aulbach’s father died in March 2018 and her mother in June 2019. Moira is now “aggressively” saving with her own children in mind.

Maryanne V. Scott of Bucks County tried to keep her father, Sam, in his own home as long as she could.

At first, he would forget the year or president. He would mow the lawn but miss large patches. Then he grew paranoid, suspecting someone was breaking in to shut his water heater off.

Scott and her brother eventually found a room for their father that cost around $5,000 a month in 2011 - an amount covered by Sam’s aid and attendance benefits as a veteran of World War II, his Social Security checks, and his pension. The cost ballooned to around $6,500 a month when he was moved to a memory care unit.

“I don’t know how else you afford it,” Scott added of her father’s benefits. Sam died in 2014 at the age of 93 after Scott says he literally forgot how to eat.

Help with costs

One of the state’s more pointed legislative accomplishments is a newly expanded support and reimbursement program that helps unpaid at-home caregivers cover related costs.

But Pennsylvania Secretary of Aging Robert Torres acknowledges the program has been “historically underutilized, no question.”

During the fiscal year that ended in July 2020, the program paid out more than $7 million in reimbursements to 4,564 individuals. The Alzheimer’s Association counts half a million family caregivers statewide.

“I think there’s a lot of room to really solidify what we’re doing,” Torres said. “I think we’re doing some things that are going to improve the situation, but it’s going to need the focused attention of not just the government but also the general public and private sector.”

Brian Duke, former secretary of Pennsylvania’s Department of Aging, was in office when the state plan was commissioned by Corbett. The plan is intentionally far-reaching and comprehensive, Duke said - too comprehensive for state government to carry out alone. In short, solving an enormous problem requires an enormous coalition spanning both the public and private sectors.

On a recent trip to see his wife at the long-term care facility where she now lives, in a courtyard surrounded with fences and locks, Pat Loughney held Candy’s hand in the open air. She looked disoriented and anxious in the sun.

A veteran of the war in Vietnam, Pat described the costs of dementia as emotionally, physically and financially “staggering,” adding, “I don’t think we have come to grips with it yet as a nation.”

This story is a collaboration between PublicSource and Spotlight PA, published as part of a Pittsburgh Media Partnership project. 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.