Category Archives: Alzheimer’s Disease

Value of routine dementia screening questioned

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Illustration of the skull and brainMichelle Andrews
KHN
MAY 06, 2014

For the millions of seniors who worry that losing their keys may mean they’re losing their minds, the health law now requires Medicare to cover a screening for cognitive impairment during an annual wellness visit.

But in a recent review of the scientific research, an influential group said there wasn’t enough evidence to recommend dementia screening for asymptomatic people over age 65.

What’s a worried senior to think? Continue reading

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Alzheimer’s support model could save states millions

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And younger man's hand holds an elderly man's handBy Lisa Gillespie

As states eye strategies to control the costs of caring for Alzheimer’s patients, a New York model is drawing interest, and findings from a study of Minnesota’s effort to replicate it shows it could lead to significant savings and improved services.  Continue reading

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UCLA memory program offers ‘gym for your brain’

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Vikki Helperin, 84, dances with her husband Sidney, 88, a retired anesthesiologist, at the Longevity Center at the University of California Los Angeles Medical Center. He was diagnosed with Alzheimer’s about four years ago, and the couple is hoping the memory sessions will slow the progression of the disease (Photo by Anna Gorman/KHN).

 

By Anna Gorman
KHN Staff Writer
MAR 15, 2014

This KHN story was produced in collaboration with wapo

Just as they had so many times during the past 60 years, Marianna and Albert Frankel stepped onto the dance floor. He took her hand in his, and smiling, waltzed her around the room.

“I remembered how it used to be and we could really do the waltz and he would whirl me around until I got dizzy,” said Marianna Frankel, 82, who is 10 years younger than her husband.

For just a few minutes as the music played, she didn’t think about her husband’s memory loss, the long days of silence or how much he had changed.

The Frankels and about 20 others had come to the University of California Los Angeles Medical Plaza on a breezy Tuesday afternoon to learn ways to boost the memory and help both patients and caregivers cope with what already had been lost.  Continue reading

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Women’s Health – Week 14: Dementia

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From the Office of Research on Women’s Health

Dementia is the loss of thinking, memory, and reasoning skills to the extent that it seriously affects a person’s ability to carry out daily activities. Dementia is not a disease itself but a group of symptoms caused by certain diseases or conditions.

The most common form of dementia is Alzheimer’s disease. People with dementia lose their mental abilities at different rates and may eventually need total care.

Symptoms of dementia
  • Being unable to remember things.
  • Asking the same question or repeating the same story over and over.
  • Becoming lost in familiar places.
  • Being unable to follow directions.
  • Getting disoriented about time, people, and places.
  • Neglecting personal safety, hygiene, and nutrition.
  • Changing clarity in memory, language, and reasoning.
  • Changing moods and personality.
  • Losing the ability to perform daily activities like driving a car or handling money.

A person with dementia should be under the care of a health care provider. The health care provider might prescribe medications that may help maintain thinking, memory, and speaking skills, and that may lessen certain behavioral problems for a few months to a few years.

Family members and friends can help people in the early stages of dementia to continue their daily routines, physical activities, and social contacts. If you are concerned that you or someone you know has a serious memory problem, talk with your health care provider.

Note
There are now drugs to treat diseases such as Alzheimer’s disease. Although these drugs do not stop the disease or reverse existing brain damage, they may be able to lessen symptoms of the disease for a time. This may improve a person’s quality of life, ease the burden on caregivers, or delay admission to a nursing home.
 
For more information: www.nia.nih.gov
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Life and Death in Assisted Living, Part 1 — “The Emerald City”

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“The Emerald City”

By A.C. THOMPSON, ProPublica and JONATHAN JONES in collaboration with 

A special to ProPublica

joan_boiceJoan Boice needed help. Lots of it. Her physician had tallied the damage: Alzheimer’s disease, high blood pressure, osteoporosis, pain from a compression fracture of the spine. For Joan, an 81-year-old former schoolteacher, simply getting from her couch to the bathroom required the aid of a walker or wheelchair.

The Alzheimer’s, of course, was the worst. The disease had gradually left Joan unable to dress, eat or bathe without assistance. It had destroyed much of the complex cerebral circuitry necessary for forming words. It was stealing her voice.

Joan’s family was forced to do the kind of hard reckoning that so many American families must do these days. It was clear that Joan could no longer live at home. Her husband, Myron, simply didn’t have the stamina to provide the constant care and supervision she needed. And moving in with any of their three children wasn’t an option.

These were the circumstances that eventually led the Boice family to Emeritus at Emerald Hills, a sprawling, three-story assisted living facility off Highway 49 in Auburn, Calif. The handsome 110-bed complex was painted in shades of deep green and cream, reflecting its location on the western fringe of the craggy, coniferous Sierra Nevada mountain range. It was owned by the Emeritus Corp., a Seattle-based chain that was on its way to becoming the nation’s largest assisted living company, with some 500 facilities stretching across 45 states.

Emeritus at Emerald Hills promised state-of-the art care for Joan’s advancing dementia. Specially trained members of the staff would create an individual plan for Joan based on her life history. They would monitor her health, engage her in an array of physically and mentally stimulating activities, and pass out her 11 prescription medications, which included morphine (for pain) and the anti-psychotic drug Seroquel (given in hopes of curbing some of the symptoms of her Alzheimer’s). She would live in the “memory care” unit, a space designed specifically to keep people with Alzheimer’s and other forms of dementia safe.

At Emerald Hills, the setting was more like an apartment complex than a traditional nursing home. It didn’t feel cold or clinical or sterile. Myron could move in as well, renting his own apartment on the other side of the building; after more than 50 years of marriage, the couple could remain together.

Sure, the place was expensive — the couple would be paying $7,125 per month — but it seemed ideal.

During a tour, a salesperson gave Myron and his two sons, Eric and Mark, a brochure. “Just because she’s confused at times,” the brochure reassured them, “doesn’t mean she has to lose her independence.”

Here are a few things the brochure didn’t mention:

Just months earlier, Emeritus supervisors had audited the operations of the memory care unit where Joan would be living. It had been found wanting in almost every important regard. In truth, those “specially trained” staffers hadn’t actually been trained to care for people with Alzheimer’s and other forms of dementia, a violation of California law.

The facility relied on a single nurse to track the health of its scores of residents, and the few licensed medical professionals who worked there tended not to last long. During the three years prior to Joan’s arrival, Emerald Hills had cycled through three nurses and was now employing its fourth. At least one of those nurses was alarmed by what she saw, telling top Emeritus executives — in writing — that Emerald Hills suffered from “a huge shortage of staff” and was mired in “total dysfunction.”

During some stretches, the facility went months without a full-time nurse on the payroll.

The paucity of workers led to neglect, according to a nurse who oversaw the facility before resigning in disgust. Calls for help went unanswered. Residents suffering from incontinence were left soaking in their own urine. One woman, addled by dementia, was allowed to urinate in the same spot in the hallway of the memory care wing over and over and over.

The brochure also made no mention of the company’s problems at its other facilities. State inspectors for years had cited Emeritus facilities across California, faulting them forfailing to employ enough staff members oradequately train them, as well as for other basic shortcomings.

Watch Life and Death in Assisted Living Preview on PBS. See more from FRONTLINE.

Emeritus officials have described any shortcomings as isolated, and insist that any problems that arise are promptly addressed. They cite the company’s growing popularity as evidence of consumer satisfaction. They say that 90 percent of people who take up residence in assisted living facilities across the country report being pleased with the experience.

Certainly, the Boice family, unaware of the true troubles at Emerald Hills, was set to be reassured.

“We were all impressed,” recalled Eric Boice, Joan’s son. “The first impression we had was very positive.”

And so on Sept. 12, 2008, Joan Boice moved into Room 101 at Emerald Hills. She would be sharing the room with another elderly woman. After a succession of tough years, it was a day of great optimism.

Measuring the dimensions of his mother’s new apartment, Eric Boice sought to recreate the feel of her bedroom back home. He arranged the furniture just as it had been. He hung her favorite pictures in the same spots on the wall. On her dresser, he set out her mirror and jewelry box and hairbrush.

Joan, 5-foot-2 and shrinking, had short snow-and-steel hair and wintry gray-blue eyes. Eric looked into those eyes that day at Emerald Hills. He thinks he might have seen a flicker of fear. Or maybe it was just confusion, his mom still uncertain where, exactly, she was.

A Reform Movement Winds Up on Wall Street

The Emeritus Corp., the assisted living corporation now entrusted with Joan’s life, sat atop an exploding industry.

Two decades earlier, Keren Brown Wilson had opened the nation’s first licensed assisted living facility in Canby, Ore., a small town outside of Portland. Wilson was inspired by tragedy: A massive stroke had paralyzed her mother at the age of 55, forcing her into a nursing home, where she was miserable, spending the bulk of her days confined to a hospital bed.

Wilson aimed to create an alternative to nursing homes. She envisioned comfortable, apartment building-style facilities that would allow sick and fragile seniors to maintain as much personal autonomy as possible.

“I wanted a place where people could lock the door,” Wilson explained. “I wanted a place where they could bring their belongings. I wanted a place where they could go to bed when they wanted to. I wanted a place where they could eat what they wanted.”

These “assisted living” facilities would offer housing, meals and care to people who could no longer live on their own but didn’t need intensive, around-the-clock medical attention. The people living in these places would be called “residents” — not patients.

Joan1cIt took Wilson nine years to persuade Oregon legislators to rewrite the state’s laws, a crucial step toward establishing this new type of facility. After that, states across the country began adopting the “Oregon model.”

But what began as a reform movement quickly morphed into a lucrative industry. One of the early entrants was Emeritus, which got into the assisted living business in 1993, opening a single facility in Renton, Wash. The company’s leader, Daniel Baty, had his eyes on something much grander: He was, he declared, aiming to create a nationwide chain of assisted living facilities.

Two years later, Baty took the corporation public, selling shares of Emeritus on the American Stock Exchange, and piling up the cash necessary to vastly enlarge the company’s footprint. Many of Emeritus’s competitors followed the same path.

The company’s rapid growth was, at least in part, a reflection of two significant developments. Americans were living longer, with the number of those in the 65-plus age bracket ballooning further every year. And this growing population of older Americans was willing to spend serious money, often willing to drain their bank accounts completely to preserve some semblance of independence and dignity — in short, something of their former lives.

As the assisted living business flourished, the federal government, which oversees nursing homes, left the regulation of the new industry to the states, which were often unprepared for this torrent of expansion and development. Many states didn’t develop comprehensive regulations for assisted living, choosing instead to simply tweak existing laws governing boarding homes.

In this suddenly booming, but haphazardly regulated industry, no company expanded more aggressively than Emeritus. By 2006, it was operating more than 200 facilities in 35 states. The corporation’s strategy included buying up smaller chains, many of them distressed and financially troubled, with plans to turn them around.

Wall Street liked the model. Market analysts touted the virtues of the company and its stock price floated skyward. One of the corporation’s appeals was that its revenues flowed largely from private bank accounts; unlike hospitals or nursing homes, Emeritus wasn’t reliant on payments from the government insurance programs Medicare or Medicaid, whose reimbursement rates can be capped. As the company noted in its 2006 annual report, nearly 90 percent of its revenues came from “private pay residents.”

In filings with the Securities and Exchange Commission and in conference calls with investors, Emeritus highlighted many things: occupancy rates; increasing revenue; a constant stream of complex real estate deals and acquisitions; the favorable demographic trends of an aging America.

“The target market for our services is generally persons 75 years and older who represent the fastest growing segments of the U.S. population,” Emeritus stated in a 2007 report filed with the SEC.

Today, the assisted living industry rivals the scale of the nursing home business, housing nearly three-quarters of a million people in more than 31,000 assisted living facilities, according to the U.S. Department of Health and Human Services.

Keren Brown Wilson, the early and earnest pioneer of assisted living, is happy that ailing seniors across the country now have the chance to spend their final years in assisted living facilities, rather than nursing homes. But in her view, the rise of assisted living corporations — with their pursuit of investment capital and their need to please shareholders — swept in “a whole new wave of people” more focused on “deals and mergers and acquisitions” than caring for the elderly.

She speaks from experience. After her modest start, Wilson went on to lead a company called Assisted Living Concepts, and took it onto the stock market. Wilson left the company in 2001, and it has encountered a raft of regulatory and financial problems over the last decade.

“I still have a lot of fervor,” said Wilson, who now runs a nonprofit foundation and teaches at Portland State University. “I believe passionately in what assisted living can do. And I’ve seen what it can do. But for some of the people, it’s just another job, or another business. It’s not a passion.”

“A Phenomenal Deal”

Joan1aJoan Boice, born Joan Elizabeth Wayne, grew up in Monmouth, Ill. It was a tiny farm belt community, not far from the Iowa border. Her father, a fixture in the local agriculture trade, owned a trio of riverfront grain elevators on the Mississippi and a fleet of barges. As a teenager, she spent her summers trudging through the fields, de-tasseling corn.

In 1952, accompanied by a friend, Joan packed up a car and followed the highway as far west as it would go. Then in her early 20s, she was propelled by little more than the notion that a different life awaited her in California. In a black-and-white snapshot taken shortly after she arrived, Joan is smiling, a luxuriant sweep of dark hair framing her pale face, gray waves curling in the background. It was the first time she’d seen the Pacific.

Joan had been a teacher for two years in Illinois, and she quickly found a job at an elementary school in Hayward, a suburb of San Francisco. In certain regards, her outlook presaged the progressive social movements that were to remake the country during the next two decades. She viewed education as a “great equalizing force” that could help to remake a society far too stratified by class, race and gender.

“She was just free-spirited and confident,” Eric, her son, said.

Joan met Myron Boice through a singles group at a Presbyterian church in Berkeley. On their wedding day, Joan flouted convention by showing up in a blue dress. The Boice children came along fairly quickly: Nancee, then Mark, then Eric.

Myron Boice was a dreamer. A chronic entrepreneur. He sold tools from a van. He made plans to open restaurants. He had one idea after another. Some worked; others didn’t.

Joan’s passion for education never dissipated. Even in her late 60s, she continued to work as a substitute teacher in public schools. After retirement, she began volunteering with a childhood literacy program.

But age eventually tightened its grip, and hints of a mental decline began surfacing around 2005. Eric grew worried when she couldn’t figure out how to turn on her computer twice in the span of a few months. Then she forgot to include a key ingredient while baking a batch of Christmas cookies. The cookies were inedible.

The elderly couple was still living in the San Francisco suburbs, when, in late 2006, a doctor diagnosed Joan with Alzheimer’s. As her mind deteriorated, Myron struggled to meet her needs. The situation was worsened by the fact that none of the children lived nearby. Mark was in Ohio. Nancee was about an hour away in Santa Cruz. And Eric and his wife, Kathleen, were roughly two hours away in the foothills of the Sierra.

“We offered my parents to come and live with us,” Eric recalled. But Myron said no. He and Joan wouldn’t move in with any of the kids. The family patriarch refused to become a burden.

A physician encouraged Joan and Myron to consider assisted living. It made sense. And so Myron sold their home in 2007 and the couple moved into a facility called The Palms, near Sacramento. The move put them approximately 40 minutes away from Eric and Kathleen.

“They were very attentive to every single thing she needed,” Kathleen Boice said of the staff at The Palms. “They actually re-taught her to eat with a fork and a knife.”

Joan1eBy 2008, however, Myron wanted a change. He wanted to be closer to his son and daughter-in-law and grandkids. He wanted different meals, a new environment. Myron began hunting for a new place to live, a search that led to Emeritus at Emerald Hills in Auburn.

Emeritus opened the Emerald Hills complex in 1998. It was, in many ways, a classic Emeritus facility, situated in a middle-class locale that was neither impoverished nor especially affluent. It was a sizable property, capable of housing more than 100 people.

In part because of its appetite for expansion, Emeritus was in the early stages of what proved to be a period of enormous stress. In 2007, the company had made its biggest acquisition to date, buying Summerville Senior Living Inc., a California-based chain with 81 facilities scattered across 13 states.

The purchase — which expanded Emeritus’s size by roughly one-third — helped the company make another major leap, bouncing from the low-profile American Stock Exchange into the big leagues of commerce, the New York Stock Exchange. News of the Summerville deal propelled the company’s stock to a new high. Emeritus was poised to become the nation’s No. 1 assisted living chain.

But the timing for this bold move turned out to be wretched. The real estate market was freezing up, and it would soon collapse, plunging the nation into an epochal recession. For Emeritus, the economic slowdown and then the housing crash posed direct challenges. Its services didn’t come cheap, so many people needed to sell their homes before they could afford to move into the company’s facilities. With the real estate market calcified, Emeritus’s customer pool shrank.

“Our stock price plummeted,” recalled Granger Cobb, Emeritus’s chief executive officer, who joined the company as part of the Summerville deal. The company’s occupancy rates had been trending skywards. Now they went flat.

At Emerald Hills, the economic slowdown that summer was making life tough for Melissa Gratiot, the lead sales agent.

“It was way harder to move residents in,” she remembered.

But there was some good news. She was close to a significant sale, this one to a couple. Gratiot worked the pitch. She talked with the family. She emailed. She gave them a tour of the facility’s memory care unit, called The Emerald City. She told the family she’d received approval from higher ups to offer the family “a phenomenal deal.”

Gratiot closed the sale. On Aug. 29, 2008, Myron and Eric signed the contract, and the family opened its wallet: A $2,500 initial move-in fee; $2,772 for Joan’s first two weeks in Room 101; another $1,660 for Myron.

There had been one oversight, though. No one at Emeritus with any medical training had ever even met Joan, much less determined whether Emerald Hills could safely care for her.

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Life and Death in Assisted Living, Part 2 — “They’re Not Treating Mom Well”

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By A.C. THOMPSON, ProPublica and JONATHAN JONES in collaboration with 

A special to ProPublica

Joan2aWhen the ambulance crew arrived, about 8:20 p.m., Joan Boice was in the TV lounge, face-down on the carpet. Her head had struck the floor with some velocity; bruises were forming on her forehead and both cheeks. It appeared she’d lost her balance and fallen out of a chair.

But no one at the assisted living facility could say precisely how the accident had occurred. No one knew how long Joan had been splayed out on the floor. She had defecated and urinated on herself.

Worried that Joan might have injured her spine, the emergency medical personnel gently rolled her over and placed her on a back board. They pumped oxygen into her nostrils.

It was Sept. 22, 2008 — just 10 days after Joan had first moved into Emerald Hills.

No Emeritus employees accompanied Joan to the hospital. And even though Joan’s husband, Myron, was living in the facility, the Emeritus workers didn’t immediately alert him that Joan had fallen and hurt herself. Joan, confused, injured, and nearly mute, ended up in the local hospital by herself, surrounded by strangers.

It was supposed to have been a festive night for Joan’s son Eric and his wife, Kathleen, who lived nearby. They were throwing a birthday party for their daughter, then in elementary school. The celebration was interrupted when a doctor called from the hospital with news of Joan’s fall. As Kathleen recalled it, the physician was somewhat baffled — he didn’t understand what Joan was doing in the emergency room without a family member, and he was having trouble deducing the extent of her injuries because she couldn’t communicate.

California law requires assisted living companies to conduct a “pre-admission appraisal” of prospective residents, to ensure they are appropriate candidates for assisted living.

But Emerald Hills took Joan in without performing an appraisal. It wasn’t for lack of time. The Boices had signed the contract to live at Emerald Hills more than two weeks before Joan moved in.

Joan, then, had taken up residence in the memory care unit at Emerald Hills. The unit — referred to as a “neighborhood” by the company — is a collection of abouta dozen small apartments on either side of a central hallway. At each end of the hallway are heavy doors equipped with alarms, which sound when anyone enters or leaves. The alarm system is meant to prevent residents from simply walking off.

On the day Joan moved into Room 101 in the unit, a company nurse named Margaret “Peggy” Stevenson briefly looked her over. The nurse realized that Joan needed to be monitored closely to keep her from falling — she wrote it down in her cursory assessment — but facility records show she didn’t craft any kind of detailed plan for her care and supervision.

Stevenson, asked years later about Joan, said she could recall nothing about her or her stay at Emerald Hills.

Kathleen had immediate suspicions about Joan’s fall. The family, she said, had warned the facility not to leave Joan sitting in a chair without supervision because she was liable to try to stand up, lose her balance, and topple to the floor. Joan had fallen several times during an earlier stay in an assisted living facility near Sacramento, but the staff had developed a specific plan to address the issue.

Despite the warning, Kathleen said that when she visited Emerald Hills during Joan’s first days there she often found her mother-in-law sitting in a chair alone.

The recent track record at Emerald Hills featured a host of falls similar to Joan’s, and ambulances were often called to take the injured off to the hospital. Falls are a particular hazard for the elderly, and assisted living facilities like Emerald Hills are required to report them to state regulators.

Internal company records documented 112 falls at Emerald Hills in 2008. Some residents fell repeatedly.

Consider the case of one Emerald Hills resident, 83-year-old Dorothy “Dottie” Bullock.

On April 5, 2008, an Emeritus employee discovered Bullock “on the floor in a semi-seated position” in the memory care unit, according to a state report. She “was unable to tell” the worker what had happened to her. The incident was described as a fall in state records. Emerald Hills sent her to the hospital.

Joan2bOn April 7, Bullock, back at Emerald Hills, fell again, according to the handwritten log of her personal attendant, who was hired by Bullock’s husband to give her extra help.

On April 8, Bullock, complaining of pain, was hauled by ambulance back to the hospital. Doctors concluded that she’d fractured her pelvis, but soon returned her to Emerald Hills. She fell again on April 12.

Bullock would fall again months later, for the final time.

Emeritus records show Bullock tumbled in front of her apartment and was found on the carpet with her aluminum walker beneath her. Blood spilled from her nose and a “bump” developed on her forehead, according to the company documents. The impact broke a vertebra in Bullock’s neck and crushed her nasal bones and sinus structures, hospital records show. A CT scan revealed possible fractures of both eye-sockets and the base of the skull.

Dottie Bullock died in the emergency room.

While Emeritus recorded the fatality in its internal logs, the company did not report her death to state regulators, a violation of California law. The state requires assisted living facilities to file reports on all deaths, even those believed to be from natural causes, so that it can look into suspicious or troubling incidents.

Emeritus said it lacked information about Bullock’s death and thus could not say why it had occurred.

Bullock’s personal attendant, Julie Covich, says Bullock was not supervised properly.

“I think there was neglect,” said Covich, who usually visited Emerald Hills once or twice a week to help out Bullock. “I would go in there and never see a caregiver.”

“It was hard to find anyone that was running the place,” she said. “It was crazy.”

“Heads on the Beds”

In early 2008, the year Joan Boice entered Emerald Hills, Emeritus rolled out a new business campaign. The company dubbed it the “No Barriers to Sales” effort.

The concept was straightforward: Move as many people as possible into Emeritus facilities. Wall Street was looking closely at the company’s quarterly occupancy numbers and a few percentage points could propel the stock price upward or send it tumbling down.

With the housing market foundering, Emeritus needed to step up its sales efforts.

In case there was any confusion about just how seriously the company took this new campaign, a company vice president sent a blast email to facility directors across California. In the body of the email, the vice president got right to it:“SALES and your commitment to sales is your highest priority right now.” Facility directors, the message concluded, would be “held responsible for census and occupancy growth.”

Emeritus employees across the country realized they were entering a new era.

“There was a different sense of urgency. The tone was different,” said a former Emeritus manager who ran a facility at the time. “The message from above was put as many people as possible in the beds and make as much money as possible. That’s what they said. Verbatim. Honestly.”

According to Lisa Paglia, a regional executive in California at the time, Budgie Amparo, the company’s top official for quality control, was openly critical when a Northern California facility declined to admit someone who did not have a doctor’s evaluation.

Such evaluations, which are designed to keep out seniors with problems that assisted living facilities aren’t equipped to handle, are required under a California law known as Title 22.

But on a conference call with roughly half a dozen California managers, Paglia said, Amparo declared that the Northern California facility should have admitted the resident.

Joan2d“Our priority,” Amparo declared, according to Paglia, “is to get the heads on the beds.”

The issue arose again in October 2008 during a training session for approximately 25 facility directors and salespeople held at an Emeritus property in Tracy, Calif. During the seminar, a company vice president reiterated Amparo’s instruction to disregard California law, according to court records and interviews.

The mandate prompted something of a staff revolt.

At least one facility director spoke out at the meeting: His license to operate the facility was at stake, he said.

An employee who worked at the Tracy facility eventually alerted California regulators. The state dispatched an investigator, and state records show that the investigator met with employees who confirmed that a company official had approved the practice of admitting someone without a doctor’s report. The investigator reviewed a random sample of seven resident files, finding that two people had been moved in illegally, documents show.

Amparo, a nurse whose full title is executive vice president of quality and risk management, denies directing employees to violate the regulation. In a written statement, Emeritus said, “Neither Budgie Amparo nor any of our other officers issued a directive to violate Title 22 or any other law. Emeritus does not condone allowing residents to move in without the proper documents.”

Emeritus eventually fired Paglia, and lawyers for the company have since portrayed her as a poor worker who failed to do her job competently. Along with two other former Emeritus employees, Paglia sued the company alleging wrongful termination, and wound up settling on secret terms.

For assisted living chains such as Emeritus, there is a powerful business incentive to boost occupancy rates and to take in sicker residents, who can be charged more.

Emeritus, for its part, rejects any suggestion that a quest for profits has tainted its admission practices. But in interviews, former Emeritus executives described a corporate culture that often emphasized cash flow above all else. The accounts of the executives, who spoke independently but anonymously, were strikingly consistent.

“It was completely focused on numbers and not human lives,” said one executive, who worked for Emeritus for more than three years and oversaw dozens of facilities in Eastern states.

The company’s emphasis on sales and occupancy rates, the executive said, transformed the workforce into “a group of people who were grasping at every single lever they could pull to drive profitability.”

Emeritus operates a sophisticated, data-driven sales machine. There are occupancy goals for each facility, as well as yearly company-wide goals. The company tracks dozens of data points — including every move-in and move-out of residents — in a vast database. It posts a monthly snapshot of each facility’s sales statistics on an internal website, allowing employees to see which strategies are most successful.

Sales specialists are instructed on how to use psychology to persuade potential customers to sign on. One suggestion: Give the customer “a sense of control and choice by offering two possible options.” A 2009 Emeritus sales manual, which runs 181 pages, encourages sales people to generate publicity by hosting seminars on Alzheimer’s or organizing charity efforts in the event of a natural disaster like a “flood or earthquake.”

Emeritus motivates its workforce with a broad range of financial incentives. There are bonuses for hitting monthly occupancy goals. Bonuses for hitting yearly occupancy goals. Bonuses for boosting overall earnings. And the money doesn’t just go to sales people: The company hands out checks to maintenance workers, nurses, facility directors and other workers.

Nurses play a key role in assisted living, providing much of the hands-on care. But nurses at Emeritus facilities are also expected to be deeply involved in increasing revenue by making sales.

During more than a year of reporting, ProPublica and PBS Frontline spoke to 10 facility directors who said nurses were required to participate in weekly conference calls focusing on little but economics. Those accounts are backed by an internal Emeritus document that lays out the agenda for the weekly calls and that shows an overarching concentration on finances.

Doris Marshall was at the forefront of Emeritus’s efforts to have nurses play the dual roles of caregivers and salespeople. After receiving her nursing license in 1984, Marshall had spent many years tending to patients in the emergency department of a Southern California hospital, and she’d later gone on to help run a nursing school.

But Marshall was intrigued by the assisted living business and in March 2008 she signed on to supervise 10 Emeritus properties scattered across Northern California. Amparo, the company’s head nurse, convinced Marshall to take the job, telling her nurses “had a voice” at Emeritus.

Marshall was to oversee the well-being of roughly 800 elderly people. But her job description went well beyond that: She was to help with “marketing” and “attaining financial goals.” Her job, in the end, actually involved very little nursing.

Instead, she said, she was drawn into Emeritus’s evolving strategies aimed at upping its revenues. The company planned to bring in more seniors with Alzheimer’s and dementia because they could be charged more, she said. Her boss gave her a digital tracking tool showing how much more money Emeritus could make by admitting sicker, frailer residents.

By the fall of 2010 Marshall was worn out and disillusioned. She quit.

Emeritus’s extraordinary drive to put heads in beds — perhaps routine in, say, the hotel industry — has distorted the admissions process at some facilities, records and interviews show. Since 2007, state investigators have cited the company’s facilities more than 30 timesfor housing people who should have been prohibited from dwelling in assisted living facilities.

A 2010 episode at an Emeritus facility in Napa highlighted the perils of improperly admitting people. The facility rented a room to a 57-year-old woman with an eating disorder, depression, bipolar disorder and a history of suicide attempts. The woman, who was distraught over the death of her husband, taped a note to her door saying she wasn’t to be disturbed and committed suicide, overdosing on an amalgam of prescription painkillers.

The state’s investigation into the death was scathing: the woman should never have been allowed to move in; the staff had missed or ignored bulimic episodes and her obvious weight loss; no plan of care was ever developed or implemented despite the resident’s profound psychological problems.

Emeritus, asked to respond to the state’s investigation, said only that the woman had overdosed on drugs she had brought into the facility on her own, and that as a result they could not be faulted in her death.

“She Barely Even Talked to Us”

In the aftermath of her fall in September 2008, Joan returned to Emerald Hills. But the staff, inexperienced and often exhausted, worried about her.

“She couldn’t walk, she couldn’t feed herself, she barely even talked to us, and her health wasn’t that good,” recalled Jenny Hitt, a former medication technician at Emerald Hills.

But if concern was abundant at Emerald Hills, expertise was in short supply.

Alicia Parga ran Joan’s memory care unit. On some weekends, she managed the entire building — not only the wing of residents with dementia, but the rest of the three-story assisted living facility, one that could hold a total of more than 100 residents.

After Parga started on the job, it took Emeritus roughly 18 months to give her any training on Alzheimer’s and dementia. The state regulations were hardly substantial: Someone such as Parga was obligated to get six hours of training during her first four weeks on the job. But even that requirement wasn’t met.

Emeritus has insisted that Emerald Hills had properly trained personnel to care for Joan and others, and they described Parga as a woman deeply invested in tending to the residents.

But Parga, who had barely earned a high school degree, wasn’t even familiar with the seven stages of dementia. Though she was responsible for the well-being of 15 or more seriously impaired people, as well as the supervision of employees, Parga was paid less than $30,000 per year.

Catherine Hawes, a health care researcher at Texas A&M University, conducted the first national study of assisted living facilities. In her view, training is absolutely crucial. A well-educated employee can “interpret non-verbal cues” from people like Joan, intercept seniors before they wander away from the building, or keep residents from eating or drinking poisonous substances.

“You can do great care,” she said. “You just — you’ve got to know how.”

Other than the Emeritus employees working in the memory care unit at Emerald Hills, only one person saw Joan enough to know what kind of daily care she was getting: Her husband, Myron.

He was worried. And he did his best to sum up his concerns to his son Eric:

“They’re not treating Mom well.”

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Life and Death in Assisted Living, Part 3 – “A Sinking Ship”

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By A.C. THOMPSON, ProPublica and JONATHAN JONES in collaboration with 

A special to ProPublica

Joan3eOn Sept. 30, 2008, an employee at the Emerald Hills assisted living facility in Auburn, Calif., made an entry in a company computer log:“pressure ulcer/wound.”

Joan, who had spent just 19 days in the facility, had developed the wound on her foot. The fall eight days earlier had hospitalized her and left her with bruises and an abrasion on her right temple. This, though, could be much, much worse.

Pressure ulcers — also known as bed sores — can form when a person loses the ability to move about freely. Lying in bed or sitting in a chair for long stretches of time diminishes the blood flow to the skin, causing it to break down and die. A hole grows. If bacteria creep into the wound, the bugs can devour flesh or invade the blood and bones. Pressure ulcers can turn fatal, particularly in older people.

Because of the lethal potential of pressure ulcers, the federal government monitors them closely in the nursing home business. In the eyes of experts, the sores are often an indicator of poor care. Attentive caregivers can prevent many pressure sores by making sure that people don’t spend too much time in the same position.

“We know that most bed sores are avoidable,” said Kathryn Locatell, a forensic geriatrician who investigates allegations of elder abuse for California Department of Justice. “That is the consensus of experts in the field.”

Physicians grade the ulcers on a scale ranging from Stage 1 to Stage 4, with Stage 4 being the most serious. In California, assisted living facilities are allowed to house people with Stage 1 and 2 sores, but only if the resident receives medical treatment from a “skilled professional.” The law bars facilities from renting rooms to people with more severe pressure ulcers.

The Emerald Hills worker who wrote up Joan’s pressure ulcer on Sept. 30 understood its significance. The employee noted that a “skilled professional”would be treating the wound.

Emerald Hills was supposed to contact Joan’s doctor when she developed the ulcer. But nobody from Emerald Hills called a doctor. No nurse came to salve Joan’s wound. And nobody told Joan’s relatives — her husband, Myron, who lived in the same facility, or her son who lived nearby — about the development.

Joan’s short, painful stay at Emerald Hills seemed to be accelerating her decline.

Things had been different at the first assisted living facility Joan had lived at, a place called The Palms near Sacramento. There she’d enjoyed a constant stream of activities. “She was doing things every day,” remembered Eric Boice, her son. There were storytelling sessions, games of wheelchair bowling, arts and crafts. Once Joan had smeared finger paint on her palm and pressed it to a piece of paper, creating a keepsake for her son.

Adequate staff at The Palms was central to the family’s satisfaction with Joan’s stay. Promises that staff would keep Joan active and engaged — central ambitions in dementia care — were kept. And the perils of prolonged inactivity, like mental decline and dangerous sores, were avoided.

By comparison, the unit at Emerald Hills where Joan lived seemed to the family to be poorly staffed and thus static. Staff rarely turned up to organize activities. What few staffers were available managed only to bring Joan down to the TV lounge, where she sat, unengaged. Myron and other family members visited frequently, but otherwise she was marooned.

Joan3aMelissa Gratiot, the Emeritus salesperson who had convinced the Boices to come to Emerald Hills, had given the family a brochure during her sales pitch. The facility’s “entire staff” would strive to produce “meaningful interactions and activities” for Joan.

But Gratiot had come to doubt her own marketing pitch, and a lack of staff was part of what colored her regret. She saw few activities going on in the memory care unit and rarely saw her colleagues working to protect Joan from long stays in her wheelchair or bed.

“When I would see Joan,” Gratiot said, “she’d be in the TV room, sitting in a chair.”

“State Visits, Fines, Resident Upheaval”

Just months before Joan arrived at Emerald Hills, Mary Kasuba, a nurse there, told senior management at Emeritus that things needed to change. She took her concerns directly to the top bosses, the executives in Seattle who ran the assisted living empire from a gleaming glass office cube on the Puget Sound.

In late 2007, Kasuba wrote a five-page letter and sent it via certified mail to the 10 highest-ranking figures in the company. In the letter, Kasuba warned of “total dysfunction” at Emerald Hills because of “the way the corporation mandates this building to be run.”

She pleaded for the bare essentials any assisted living facility needed to operate safely: a key one being an adequate workforce.

Alarms bells had been ringing in Kasuba’s head nonstop during her short tenure at Emerald Hills. The first was triggered when she had to cover the overnight shift with another employee. There were roughly 80 seniors living at Emerald Hills at the time.

“There were residents that could not necessarily get up and walk to the bathroom on their own,” Kasuba said in an interview.

Some of them, she immediately noticed, needed the help of two people — all the workers she had on duty — to get out of bed and shuffle to the toilet. If any sort of emergency had forced Kasuba to evacuate the building, it would have been slow-motion chaos.

Typically, Kasuba would grab a nap as dawn broke and be back at Emerald Hills by 10 a.m. The scene wasn’t much better on the day shift. She came to feel the company was exploiting its customers.

In her letter to Emeritus officials, she wrote, “Since I came to work with Emerald Hills, there has not been enough staff to cover any part of the day-to-day staffing needs.”

“The med room is a sinking ship with no ballast compartments to keep it afloat.”
MARY KASUBA, FORMER NURSE AT EMERALD HILLS, IN A LETTER TO EMERITUS EXECUTIVES

Kasuba’s biggest worry was the medication room. The medication technicians, called “med techs” in the industry, were responsible for passing out a mountain of pills each shift. Med techs aren’t nurses or even certified nursing assistants. Typically, they have no formal medical education. At Emerald Hills at that time they made approximately $8 to $10 an hour.

One medication technician, Kasuba wrote, “was placed in the med room with maybe a day’s training. She worked in the med room until her stress level became such that she stepped down.”

Recordkeeping throughout the facility was haphazard at best. Documents were missing or misfiled. One resident’s chart, according to the nurse, contained a doctor’s evaluation that had been filled out and signed by a family member — not an MD.

Joan3bAgain, Kasuba didn’t mince words, calling the medication operation “a sinking ship with no ballast compartments to keep it afloat.”

Kasuba ended her letter to the company’s executives with an ultimatum: Let her make major changes at Emerald Hills or she was out.

“Corporate can hire someone else and the cycle of dysfunction will begin again,”she wrote. “State visits, fines, resident upheaval, staff turnover.”

Emeritus replaced Kasuba. The company says it dealt with the concerns she raised about Emerald Hills. Many of those who remained at Emerald Hills tell a different story.

A couple of years later, Susan Rotella got a taste of the same problems, but on a much grander scale. In November 2009, Emeritus tapped Rotella, who had made her career in assisted living, to manage the company’s California division.

It was a big job. Emeritus agreed to pay her $210,000 per year, plus bonuses and stock options. She’d be part of a three-person executive team overseeing 45 facilities.

Rotella testified under oath that as she traveled around the state meeting Emeritus employees she heard one thing over and over: The facilities needed more staff.

The division, however, wasn’t posting the kind of financial numbers Emeritus wanted to see.

“All eyes were on California because we were keeping the stock price down,” she said. “As California went, so went Emeritus.”

“He turned to me and with a big smile on his face said, ‘Aah, so you’re the one who’s going to run the shithole.’”
SUSAN ROTELLA, FORMER EMERITUS VICE PRESIDENT IN CHARGE OF OPERATIONS IN CALIFORNIA, TESTIFYING TO WHAT COMPANY FOUNDER DANIEL BATY SAID TO HER AFTER SHE TOOK THE JOB.

One man didn’t bother to sugarcoat his feelings about the California division, Rotella said. As she tells it, shortly after signing on with Emeritus, she was welcomed aboard by company founder Daniel Baty.

Baty, she recalled, said, “Ah, so you’re the one who is going to run the shithole.”

He denies making the statement.

Rotella’s superiors directed her to slash labor costs by 10 percent across the board, she said. Facility directors “were constantly being told to cut labor expense, cut labor, cut labor, cut labor,” she added.

Emeritus said Rotella’s claims were false. “Unfortunately, it is another accusation without any documentation, evidence, or even another person present to verify the conversation. Emeritus would not enact across-the-board labor cuts at the expense of our residents’ care needs,” the company said in a statement.

The assisted living industry is overseen in a very different manner from its closest cousin, the nursing home business. Nursing homes are governed by a complex grid of federal and state regulations.

The U.S. Centers for Medicare & Medicaid Services collect a vast array of data from nursing homes — drug prescribing patterns, staffing levels, patients who’ve had falls, etc. — and make much of it available to the public through a website called Nursing Home Compare.

And an array of information on fines and inspections can be found on the easier-to-use website Nursing Home Inspect. States set minimum staffing requirements for nursing homes.

The early advocates of the assisted living movement chafed at many of these regulatory dictates. They wanted flexibility, the ability to innovate. They wanted to create spaces that were more home, less hospital. Today, two decades on, there are still no federal standards and leaders of this growing business sector continue to push back against anything more than modest government oversight.

Their success at staving off uniform regulation from state to state means Emeritus’s hundreds of facilities operate under wildly varying regulations and offer different services. From Miami to Dallas to Des Moines, there isn’t even an agreed-upon definition of assisted living.

“We say in this business if you’ve seen one assisted living community, you’ve seen one assisted living community,” said Rick Grimes, president of the Assisted Living Federation of America, a trade group.

The dearth of hard and fast rules gives executives and managers at assisted living companies wide latitude in deciding how many workers should be clocking in on a given shift. Many states require assisted living facilities to keep “sufficient” staff on duty at all times, but don’t define what that means.

The increasing frailty of the population in assisted living makes adequate staffing critical to quality of care, said Catherine Hawes, a Texas A&M professor and an expert on the assisted living industry. According to a 2010 national survey, more than 50 percent of assisted living residents need help dressing and bathing and 42 percent have some form of dementia.

Publicly traded companies like Emeritus are under substantial pressure to hit their financial goals — each quarterly performance is scrutinized and failing to meet expectations can damage the company’s value.

We say in this business if you’ve seen one assisted living community, you’ve seen one assisted living community.”
RICK GRIMES, PRESIDENT OF THE ASSISTED LIVING FEDERATION OF AMERICA.

To hit their goals, then, Emeritus tightly manages its workforce. “Tightly manages” often means reducing staff, slashing wages and curtailing benefits.

Joan3cChief executive Granger Cobb addressed the issue with investors and market analysts as recently as last year.

“We’re feeling good about the cost structure,” he said. “I think we’ve got a very good control on the — our biggest expense, which is labor. We’re managing it very closely.”

Emeritus had just cut its overhead by 8.2 percent, largely by cutting pay and benefits.

The company asserts that all of its facilities are adequately staffed, and that it would never compromise care by irresponsibly reducing staff.

One former Emeritus executive, who supervised nurses in multiple states for a period of years, thought the company kept its staffing levels dangerously low as a matter of policy.

“Is that unique to Emeritus? I would say it’s ubiquitous to the entire assisted living industry,” said the executive. “We need to take a huge step back and look at this whole industry.”

Lack of proper supervision at Emeritus facilities appears to have played a central role in several cases in which residents suffered avoidable and sometimes catastrophic harm.

  • On Christmas Day 2004, Mabel Austin froze to death in front of an Emeritus facility in Texas. The lone staffer on duty in the memory care unit didn’t realize that Austin, 91 years old and suffering from Alzheimer’s, had walked out of the building. Emeritus would not comment on this case.
  • It took about 12 hours for staffers at an Emeritus facility in Iowa to call an ambulance after 84-year-old Paulyne Stevens took a fall in her bedroom. An employee at the facility put Stevens back in her bed, but did not contact any medical professionals. When doctors finally examined Stevens they found she had six broken ribs and a deflated lung. Investigators found workers at the facility didn’t have legally required training. Emeritus admits the incident was mishandled, and has settled a lawsuit with the family.
  • June Hassler, 86, died in a locked bathroom at an Emeritus facility in Pennsylvania. It took employees 36 hours to notice. The director of the facility said the staff thought Hassler was visiting family. Two years earlier, 84-year-old Eleanor Hodges died in the same facility after being attacked by a male resident with a history of aggressive behavior. The state found that Emeritus had failed “to provide proper supervision” of the man. Emeritus told the state it would act to correct the problems that led to Hodges’s death. The families of both women have sued Emeritus.

Emeritus portrays incidents such as these as isolated events and says state authorities are citing the company less and less frequently for violations. “If you look at our regulatory history versus others in the industry we probably fare pretty well,” Cobb said.

There are no national statistics on regulatory violations in assisted living. But ProPublica and Frontline obtained and analyzed data from California, the state with the most assisted living facilities.

The data – compiled by the state ombudsman program, which investigates allegations of abuse and misconduct – shows that between 2010 and 2012, Emeritus had more verified complaints per bed than any of its major competitors.

In two of those years, the company had more substantiated neglect complaints than the other big chains, again on a per bed basis.

Some companies have devised their own systems for calculating how many people should be on duty on any given shift. Though Emeritus collects and parses a vast array of data, much of it focused on sales and profitability, it has chosen not to create a staffing ratio or formula.

This surprised Rotella, the California executive. She had previously worked at another major chain called Sunrise Senior Living, which had used a formula based on the health needs of each resident.

Rotella said she brought the issue up at a meeting with the man in charge of quality control for the entire Emeritus empire, a nurse named Budgie Amparo.

“He stood up and he was quite agitated. And he said, ‘We will never have staffing ratios at Emeritus,’” Rotella recalled. Amparo said that if somebody got hurt or killed in an Emeritus facility, a written ratio or formula could be a liability, according to Rotella. If it turned out the company wasn’t following its own staffing protocol, the plaintiff lawyers would jump all over them.

“I don’t remember that,” Amparo said. In a statement, Emeritus said “we do not have a staffing formula” because such a formula “would not serve our residents’ best interests.”

Emeritus ousted Rotella shortly after her conversation with Amparo. It was March 2010 and she had been on the job for three months. Today she works as a consultant to assisted living firms and is suing Emeritus for wrongful termination. Company leaders, Rotella said, viewed her as a “troublemaker.”

When Joan Boice took up residence at Emerald Hills in the autumn of 2008, the lack of staff was evident.

The facility didn’t assign any workers to the memory care unit on five nights, according to company time sheets.

Emeritus says the employees filled every shift in the memory care unit; they just didn’t keep accurate records of their labor.

Workers in the building felt overwhelmed and bitter. As discontent mounted, the facility director ordered employees not to share their complaints with the public.

“They do not need to know you are tired,” the director wrote in a memo. “They are NOT to hear we are short staffed.”

Then Emeritus decided to shrink the payroll even further. The facility reduced the number of med techs. That meant there would only be one such employee on duty during the facility’s busiest shifts.

Jenny Hitt was one of the med techs affected by the downsizing. Hitt had to keep track of “thousands” of pills coming into the building from a host of different pharmacies. Some residents were taking “15 different prescriptions” and needed to receive pills up to six times per day.

Hitt, who didn’t complete high school and had no medical education, said she was so busy that she sometimes had to “run down the hallways” to get all of her rounds done.

The company, she said, often assigned her to double shifts and once kept her on duty for 24 hours straight.

After Hitt made multiple calls to the company’s “Ethics First” hotline — a supposedly anonymous in-house reporting tool — Emeritus fired her. Her boss told her she had made a medication mistake. She says she was fired because she was calling attention to the building’s failings.

Out of a job, Hitt said she felt only relief. She was weary of worrying that she might kill someone.

Language Had Left Her

In Room 101, Joan’s room, the ulcer on her foot worsened. One day slid into the next. An Emeritus employee faxed a message to Joan’s physician: Joan “seems to be experiencing more frequent and intense pain…She has trouble putting weight on her right foot…Please advise.”

It was Oct. 14 — a full two weeks after the Emeritus worker had first noted the wound in her records.

The physician promptly faxed back instructions: Bring her in for X-rays of her right foot and ankle. Joan’s family was responsible for taking her to appointments with her doctor, but nobody at Emerald Hills told the family about the doctor’s order.

It would be three more weeks before the facility finally informed the Boice family about Joan’s damaged foot. An Emeritus worker phoned Kathleen Boice, Joan’s daughter-in-law, who lived nearby, on Nov. 3. Blood, the employee said, was seeping through Joan’s sock.

Eric Boice took his mother to the doctor on Nov. 4. The doctor’s notes show that the physician thought the wound might have been an ulcerated bunion; the physician, Tayyiba Awan, wondered whether Joan had been lying on her side for long periods of time. The wound had scabbed over and seemed to be healing. Awan did not examine the rest of Joan’s body for sores.

But Joan had other issues, the doctor noted. She’d lost much of her ability to move the right side of her body. The doctor wondered whether she had suffered a series of minor strokes. And so she ordered physical therapists to visit Joan at Emerald Hills to try and improve her mobility.

Back at Emerald Hills, Myron came to Joan’s room frequently, often bringing snacks. Eric Boice would visit his mother one day; the next, Kathleen would visit.They divided the labor, and the heartache.

Over the weeks, Kathleen came to think something was “weird.” But she couldn’t figure out what was going on with Joan. And Joan couldn’t say what was wrong. Language had left her.

“You know, most of the time she was in a bed. Blanket sheets up on her,” Eric recalled. “You know, I sat with my mom, I held her hand and I spoke to her.”

He told her what the grandkids were doing. He’d inform her if his son had played a baseball game the day before.

Disease had transformed his mother. It had spun their roles around. But in Room 101, Eric couldn’t always bring himself to treat his mother like a child. He just never felt comfortable asking her to undress so he could examine her.

If Eric had seen her skin he might have understood what was going on. There wasn’t just a single wound. The pressure ulcers were marching across her body.

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Life and Death in Assisted Living, Part 4 — “Close the Back Door”

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By A.C. THOMPSON, ProPublica and JONATHAN JONES in collaboration with 

A special to ProPublica

Joan4aInside Room 101 at Emerald Hills, a covert campaign was under way in the fall of 2008. Potentially lethal bed sores were spreading across Joan’s body, and workers were trying to improvise help.

The workers at Emerald Hills lacked both the skills and the legal authority to treat Joan. But they were nonetheless determined to try.

Jenny Hitt, a young woman with no medical training who was in charge of handing out medication in the facility, said she and her coworkers rubbed cream into Joan’s wounds, known as pressure ulcers.

“We knew we weren’t supposed to do it,” said Hitt. “We knew we weren’t licensed or medically trained to do it.”

One ulcer began eroding the skin on Joan’s right buttock.

“At first, it was just like a small, round red spot,” Hitt said. Then, she said, the skin started to deteriorate. “The area started to become like a hole.”

Peggy Stevenson, the lone nurse employed by Emerald Hills, told the workers to act secretly, according to Hitt. “She said, ‘Just don’t let anybody know,’” Hitt recalled.

And so the Boice family was kept in the dark, even her husband, Myron, who lived in another room at the facility; so, too, were the more highly trained nurses who had been sent into the facility to deal with what they had been told was a limited threat: a wound on Joan’s foot.

An ulcer formed on Joan’s right heel. Another on her left heel. The ulcer that had previously erupted on the inside of her right foot opened up again.

Susan Reuther spent a lot of time in Room 101. Her mother was Joan’s roommate.

“They told me, ‘This is the worst — we don’t know what to do,’” Reuther said of the workers. “It would take them maybe an hour, an hour and a half, just to roll her over.”

Officials with Emeritus deny that any such improper care took place. Stevenson, when asked years later about Joan’s care, said she could remember nothing about her treatment, and did not even recall who Joan was.

But records suggest Joan’s situation wasn’t unique. Under California law, seniors with serious bed sores, the kind that require sophisticated and urgent treatment, are not supposed to stay in assisted living facilities.

The reasons aren’t hard to understand: Assisted living facilities, dreamed up three decades ago as a less restrictive and institutional alternative to nursing homes, don’t have the trained personnel or resources to treat potentially life-threatening conditions.

Yet regulators have repeatedly cited Emeritus for housing residents with severe bed sores.

At a facility in Whittier, investigators discovered a person with a bacteria-ridden pressure ulcer near the base of the spine so deep it needed surgery. A wound care expert said the ulcer was teeming with “numerous” strains of bacteria, a sign the person had “probably gone a couple of months” without treatment, according to a state report.

Investigators cited a facility in San Diego for housing a resident with advanced sores on the right hip and both feet. One of the ulcers “was also gangrenous,”state records show. The person was “suffering from severe malnutrition” and was besieged by Clostridium difficile, an aggressive brand of bacteria that can be lethal.

A woman at a facility outside Sacramento was killed by an infection linked to five pressure ulcers. The state fined Emeritus, saying the woman should have been moved to a setting more appropriate to her needs.

Joan Boice, after a career teaching school, had spent the early part of her retirement volunteering with children eager to read and write. Her marriage to Myron had lasted decades, and her children had gone on to lives of accomplishment.

But Eric Boice, one of Joan’s two sons, had few illusions about his mother’s long-term future when he had helped move her into Room 101 at Emerald Hills in September 2008. Her dementia, a problem for years, had become more severe; she could not really talk; moving around was difficult.

Eric had worked for more than a decade as a police officer. He could stare at an unpleasant truth.

“We knew that my mom’s disease was progressive,” he recalled. His chief concern, then, was making sure his mom was “treated with the utmost dignity and honor and respect.”

The Boice family had paid handsomely to make sure that happened. In less than three months, the family had paid more than $12,000 to cover Joan’s room, care and meals.

“Retain the Residents as Long as You Can”

A May 2008 memo from a senior nurse at Emeritus to two other supervising nurses in California included an agenda for an upcoming strategy meeting:

  • Sales
  • Occupancy
  • Back Door

To those outside of Emeritus, a publicly traded company that has expanded dramatically in recent years, the memo’s third agenda item might have been inscrutable. But within the company, people knew what it meant. Emeritus was intensely focused both on persuading people to move into its buildings and dissuading them from moving out. They did not want paying customers to, as they put it, go out the back door.

Around the company, the subject came up regularly. And the emphasis on the policy aim could be explicit and emphatic.

“KEEP THE BACK DOOR SHUT!” shouted a 2009 email from a nurse named Nicole Jackson, who oversaw Emeritus facilities in Northern California.

Joan4bIn an internal 2010 company newsletter, Emeritus touted the success of employees in San Antonio, Texas: “These dynamos really have grown occupancy this year due to closing the back door! They’ve decreased their move outs by 4 per month!”

In an email sent the same year, Budgie Amparo, the nurse who served as head of quality control for the company, thanked Emeritus nurses around the country. “I would like to recognize our nurses for their unbelievable focus” on “the back door,” he wrote.

Emeritus employees at all levels describe a company consumed. Former nurse Doris Marshall said that “closing the back door” was one of her chief responsibilities. “It meant to retain the residents as long as you possibly can,”she said.

The company tracks move-outs closely at each of its hundreds of facilities, gauging the trends and patterns from region to region.

Its officials describe the zeal for retention as benign — nothing more than a good-faith effort to please customers and adjust services and care for residents whose needs change over time. A resident may dislike the meals or squabble with the ornery guy in the apartment down the hall. Perhaps a person can’t quite afford the monthly fees.

Emeritus wants “to ensure that the residents do not choose to move out because they are dissatisfied,” the company said in a written statement. “We do monitor move-outs so that we can identify and correct any issues and enhance resident satisfaction.”

But some people who have worked for the company, as well as some families who have endured painful episodes at Emeritus facilities, said the pressure to “close the back door” has led to dangerous lapses in judgment. In some cases, former employees said, the company failed to move out residents who should have been sent to nursing homes or other medical institutions.

ProPublica and PBS Frontline sifted through thousands of pages of regulatory records from seven states — Texas, California, Iowa, Mississippi, Georgia, Ohio and Florida. Since 2007, inspectors in each state have cited Emeritus for housing seniors who should have been moved out.

Regulators in Iowa faulted an Emeritus facility near Des Moines three times in less than two years. One case involved a 77-year-old with Alzheimer’s who repeatedly attacked other residents, groped female residents, and eventually had to be hauled out of the building by police officers.

Another case centered on a resident with severe dementia who flipped over tables in the dining room and urinated on them, according to a state report. Nearly two months before state investigators showed up, a doctor had determined the resident needed a “higher level of care” and had passed that message on to the facility.

Iowa law bars facilities from renting rooms to people who are “sexually or physically aggressive.”

Regulators in Mississippi, Georgia and Texas have repeatedly cited Emeritus for housing wheelchair-bound seniors who could barely move at all. At a facility in Smyrna, Ga., investigators concluded that 15 of 35 residents shouldn’t have been there. The state labeled the violations an “imminent and serious threat to resident health and safety.” In Clinton, Miss., the number was 10 of 81, according to the state.

Emeritus disputed some of the findings by Mississippi’s regulators.

“We have no interest in preventing people from moving out,” said Emeritus founder and chairman Daniel Baty.

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experience.

Emeritus does set precise move-out targets for all of its buildings, however. One such target was articulated by an Emeritus vice president in a 2008 memo sent to employees in California. The executive wanted fewer than 3.5 people to move out of each facility per month, apparently including those who died.

The emphasis left staffers confused and fearful, according to interviews and sworn testimony. Next to none of the workers at a place like Emerald Hills had the medical background to assess the changing conditions of the residents.

Emeritus workers said the corporate push to “close the back door” made them hesitant to transfer patients to nursing homes or hospitals. They understood their decisions were being closely watched and that there could be consequences if they missed their marks on occupancy and revenues.

“Don’t let anybody move out unless they were deceased.”
LISA PAGLIA, former regional sales manager for Emeritus, on what “keep the back door closed” meant.

Nancy Cordova ran the Emerald Hills facility while Joan Boice was there. She later testified that the “close the back door” policy left her feeling pressured into housing “high acuity” clients – those with serious health problems — and uncertain about where the line should be drawn in any given case.

A 2008 email suggests that facility directors like Cordova wound up looking to senior executives to make determinations on who was truly sick or challenging enough to open the back door for.

In the email, Cordova asks her superiors about a small roster of people considering moving out of Emerald Hills. One wanted round-the-clock care. A second was more complicated: The resident had Parkinson’s disease, a degenerative disorder of the central nervous system, and needed three or four people to help get her in and out of bed.

“Just for added fun,” Cordova wrote of the resident, “she has severe hallucinations that are disturbing to her and the staff.”

It is unclear what the supervisors told Cordova to do.

Lisa Paglia, a former regional sales manager, said, in her view, “keep the back door closed” could be translated into another, more blunt, phrase:

“Don’t let anybody move out unless they were deceased.”

“I Don’t Know How She Sat”

Joan4cAt Emerald Hills, Joan, her sores multiplying and worsening, became ever more isolated.

She sat for hours in her wheelchair. She seemed smaller. Depressed. She rarely ate or drank much. Her weight dropped. The muscles in her right arm had seized up due to inactivity, locking at the elbow.

The ulcers on Joan’s heels deepened. They began to blacken as the skin died. The sore on her buttock was chewing through her skin and into the fat beneath.

 

Joan groaned. She frowned. But she couldn’t speak.

Danielle Woodlee, who served as a kind of concierge at Emerald Hills, was struck by Joan’s deterioration. “It was almost like a movie,” she remembered. “I mean, the decline, it was just horrible.”

And Emerald Hills still hadn’t told the family what was going on underneath Joan’s clothing.

Joan’s physician would later say that Emerald Hills never informed her of many aspects of Joan’s deterioration – that she had fallen and been taken to the hospital, that she had become confined to her wheelchair, or that she was losing so much weight.

“It was almost like a movie. I mean, the decline, it was just horrible.”
DANIELLE WOODLEE, who worked at Emerald Hills, on Joan Boice’s health.

One Saturday morning, Eric showed up at Emerald Hills with Joan’s morphine, prescribed for the pain caused by a problem with her spine. He couldn’t find any Emeritus employees save Woodlee. He stalked through the memory care unit. He looked in the medication room, and the nurse’s office.

“I couldn’t find anybody,” he said.

After 20 or 30 minutes, Eric Boice left the drug with Woodlee, the concierge. The episode made him furious.

If he had seen Joan’s medication charts, his fury likely would have been exacerbated. The charts showed that on some days nobody gave Joan her morphine at all.

Eric began looking for the facility’s nurse and managing director every time he came to Emerald Hills. He could never find them. Woodlee later said there was a reason for it: She helped the senior officials hide out in her office when they knew a Boice family member was coming for a visit.

November became December. It was then that Emerald Hills formally notified the Boices of Joan’s true and now dire condition. Peggy Stevenson contacted Kathleen Boice, Eric’s wife. In an email, Stevenson said that because of Joan’s deteriorating health, she needed to be transferred to a nursing home.

Kathleen was stunned. “This was the very first time we had ever heard anything like that,” she said.

Three days later, Joan was admitted to a nursing home about a half-mile from Emerald Hills. Kathleen sat with her as a nurse examined her skin.

The nurse started with the first ulcer Joan had developed, on the side of her right foot. “It was an oozing, open sore,” Kathleen said. “There was another sore on that foot, back by the heel, and it was black. Then they took off her other sock.”

“There was a sore. It took up her whole heel. And it was black and oozing red. And not to be rude, but it smelled so bad. It was putrid. You could tell it was decaying.”

The nurse put Joan in a hospital gown. Kathleen saw more wounds, including a fluid-laden blister bulging on the inside of one arm. “Then they took off her diaper. And there were two spots on her right hip that were red. It looked like the skin was starting to come off. There was a similar spot on the left side,” Kathleen said.

Joan grimaced when the nurse touched her. Kathleen held her hand.

“I thought we were about done,” Kathleen said. “And they rolled her over and then we found the one that was on her sit bone.”

It was huge. And black. And oozing.

“It was more putrid than the one on her heel,” Kathleen said. “I don’t know how she sat. It was horrible.”

Kathleen phoned her husband, who had left the nursing home to drive his father back to Emerald Hills. “She scared me,” Eric Boice said of his wife. “She couldn’t talk. She was just sobbing. And I — and I didn’t know if she had been in an accident. I didn’t know what happened. She just started to say like, ‘The sores … the sores are all over her.’”

On Valentine’s Day, 2009, Joan died. Myron, her husband of some 50 years, was dead nine months later.

California regulators eventually cited Emeritus for improperly housing Joandespite her serious bed sores.

Joan’s death set off some agonizing soul-searching for her family.

Eric Boice was haunted for years. His mother visited him frequently in his dreams, he said. In those dreams, she was healthy and lucid and able to communicate. They talked. And Eric told her he was sorry “for not being the voice that she needed, for not demanding more of the people that we trusted with her care.”

Eric also heard from Emeritus.

Its collections department sent him a bill. Apparently, Eric hadn’t given the company sufficient notice when his mother went to the nursing home at the beginning of December. Emeritus wanted $14,175 to cover Joan’s rent and fees for December, January and February.

“Malice, Oppression, Fraud”

The Boice family sued Emeritus not long after Joan’s death, and in late 2012 the trial was looming. It was then, the family says, that Emeritus made an offer to settle the case: more than $3 million.

There were several standards terms in the proposed deal. According to Eric Boice, the company demanded that the family return the extraordinary array of internal records their attorney, Lesley Clement, had obtained from Emeritus: spreadsheets, memos, emails, policy directives, budgets, personnel files.

Emeritus would admit no wrongdoing under the proposed settlement. None of Joan’s relatives would ever be able to talk publicly about the case. And the transcripts of 160 hours of depositions of company officials would remain under seal forever.

Eric Boice said the family ultimately decided to reject the offer. “We would not have been able to share my mom’s story,” Eric said, adding: “That was part of the bargain for the money.”

Joan4dEmeritus declined to discuss details of any proposal but did not deny its existence.

Weeks later, the case went to trial and Joan’s story unspooled over two acrimonious months inside Courtroom 45 in downtown Sacramento. Nearly 40 witnesses took the stand. There were dozens of exhibits. The Boice family was there throughout, as were a team of Emeritus lawyers and two senior executives.

“Emeritus is not a health care provider. Emeritus is a real estate acquisition company,” Clement said in her opening statement on Jan. 7, 2013. “Emeritus should never take any elders into the buildings that it acquires because they don’t have the staff, they don’t have the training, and they don’t have the supervision to provide the care that Emeritus advertises.”

For Emeritus, the risks were not confined to the trial inside Courtroom 45. Headlines about an unfavorable jury verdict can linger on the Internet for years, scaring off would-be customers across the country. Emeritus mounted a vigorous defense.

“The diseases of aging are despicable sometimes,” Bryan Reid, the lead lawyer for Emeritus, told the jury that day in January. “There will be no dispute that what the Boice family had to go through was not pleasant.”

Joan Boice’s death, he argued, was not caused by neglect, but by the very serious illnesses she suffered from when she arrived at Emerald Hills, including dementia. If Joan had been neglected, why hadn’t her family taken action? Why hadn’t they reported any alleged neglect to the authorities? Why had they not moved her out?

“It will be clear at the end of this trial, I believe, ladies and gentlemen, that Emerald Hills fulfilled its obligations,” Reid said in his opening statement. “Its staff did what they were able to do as part of this team that was shepherding her through her journey.”

As Clement called witnesses and introduced internal company memos and emails, she hammered at what she argued were the company’s broken promises: Emeritus didn’t have the adequate staff it had advertised; that staff wasn’t properly trained, as the company had boasted; the company’s fixation was with occupancy rates, sales and containing costs, and not on care.

Dorothy Ting, who had run an Emeritus facility in Fairfield, Calif., testified that the seniors in her facility’s memory care unit ate out of metal dog bowls because the company would not spend the money on more appropriate dishes.

Nancy Cordova, who ran the Emerald Hills facility during Joan’s stay, was asked a pointed question by a member of the jury. Was it fair to say, the juror asked, that Cordova, responsible for 80 or so residents, many of them with dementia, was “in over her head”? “I think that would be fair to say,” answered Cordova.

One of the trial’s most dramatic episodes involved the testimony of Budgie Amparo, a senior Emeritus executive and the highest-ranking company official with any kind of medical background. Amparo, a registered nurse, had described himself as the person ultimately accountable for the safety and well-being of the thousands of elderly men and women living in the company’s vast portfolio of buildings.

However, Clement’s questioning of him, both before the trial and on the stand, called into question whether his career experiences in nursing were sufficient to shoulder that responsibility.

Amparo, who earlier under oath had described himself as the “pillar of quality” at Emeritus, testified that he had earned a master’s degree in nursing by takingonline classes offered by the University of Phoenix. He had done no clinical work as a part of the program. Amparo also had to admit that he had failed his board exams at least twice before finally gaining his accreditation as a registered nurse.

In Courtroom 45, Clement explored with Amparo one of the aspects of Emeritus’s operations that she regarded as particularly questionable: the requirement that nurses who worked for Emeritus were responsible not only for medical care, but for filling its buildings with new residents through sales.

“Since when were nurses supposed to be sales and marketers, sir?” Clement asked Amparo.

“They are not,” he said.

“Since when are nurses supposed to be worried about meeting financial goals of Emeritus?” Clement persisted.

“They are not supposed to,” Amparo said.

“Isn’t that what Emeritus requires, according to their job description?” Clement asked, referring to one of her exhibits.

“That’s what the document says, yes,” Amparo replied.

In the end, the two sides fought most bitterly over the question of Joan’s death — what had caused it and who was responsible.

Clement hired Dr. Kathryn Locatell, a forensic geriatrician, to provide expert testimony. Locatell pointed to Joan’s dramatic decline at Emerald Hills — in particular her dramatic weight loss and festering bed sores, which can be prevented or minimized with proper attention — as signs of neglect. Locatell testified that these factors had been critical in Joan’s demise. She estimated that Joan could have lived another three to five years if she had been properly treated at Emerald Hills.

Emeritus’s lawyers countered that the staff at Emerald Hills had worked tirelessly to tend to Joan. And they pointedly asked why, if Joan had been so neglected, no one ever made a formal complaint about it – not the Boice family, not the outside nurses who saw her, not her own doctor.

A neurologist hired by Emeritus ascribed Joan’s death to her advancing Alzheimer’s and a string of strokes. “She was having a series of small and accumulating strokes” in the left side of her brain, Dr. Richard Tindall testified, “leading to progressive weakness and inability to use her right side.” “This was one stroke on top of another, on top of another,” he added.

On the last day of February, the lawyers summed up their cases. Clement reminded jurors of the company’s slogan.

“‘Emeritus is committed to your family.’ Remember that? Remember their promise painted on the walls of their buildings, on their website?” she asked. “‘Our family’s committed to yours.’ But the evidence is, the truth is, Emeritus is committed to your family’s money. That’s what they are committed to.”

She continued, “Emeritus told Joan, ‘Trust us,’ and Emeritus told you to trust them. Trust their officers, their directors, their managing agents, and yet when they came into this courtroom they lied to you. They lied to Joan Boice. They lied to her family, and they lied to their own employees.”

Reid staunchly defended Emeritus’s ethics and its record. He said Clement had distorted facts, misrepresented the company’s policies and enlisted a bunch of disgruntled former employees to make false allegations. It amounted to a stock formula for litigating an elder abuse case, he said.

“The tragedy is the vicious allegations,” Reid said. “It’s not the care.”

“I don’t feel that with this loss Emeritus is doing anything different.”
ERIC BOICE on the outcome of his family’s case against Emeritus.

On March 1, the jury got the case, and after two days of deliberations, its members filed back into Courtroom 45. They had reached unanimous verdicts on more than a dozen questions, finding the nation’s largest assisted living company had acted with “malice, oppression and fraud” — and that its negligence had caused Joan’s death. The jury awarded the Boice family $3.875 million for pain and suffering — a figure that was automatically reduced to $250,000 under California law.

There was more work to do, however. The jury convened again to settle on a number, a dollar figure Emeritus would have to pay in punitive damages. The figure came back: $22.9 million. Two jurors had actually wanted to award more.

Emeritus promptly appealed, asking the trial judge, Judy Holzer Hersher, to reduce the punitive damages or order a new trial.

It would be three months before Judge Holzer Hersher handed down her ruling. But on June 10, she denied the company’s appeal in all respects. The award was lawful, she ruled. Clement had proved her case. And the evidence had shown that the company’s most senior officials were well aware of the troubles at their facilities, including Emerald Hills.

Eric said he is glad the family took the case to trial. He is grateful for the $23 million total jury award, but says Emeritus’s refusal to acknowledge any wrongdoing or failure or error has caused a kind of ambivalence to grow in his mind.

“Technically, yeah, we won and Emeritus lost,” Eric said. “But to me it’s bigger than that. It’s more about right and wrong. And I don’t feel that with this loss Emeritus is doing anything different. I honestly don’t think they have changed their practice, their business as usual.”

The jurors, in calculating their award, appear to have sent a message to Emeritus about its business practices. They came to the $22.9 million in punitive damages by adding together the 2011 compensation for Emeritus’s chairman and chief executive officer.

And then the jury took a step to make sure Emeritus didn’t forget Joan Boice, the Illinois farm girl who had come to California to chase a dream, and who, in an effort to hang onto her dignity near the end of her life, signed on with Emeritus Senior Living.

The jury tacked on 81 cents to the award — Joan’s age when she moved into Room 101 at Emerald Hills.

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HIV virons (green) budding from a white cell -- Photo: C. Goldsmith/CDC

Weekend Reading: Best of the web on health online this week

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Every week, KHN reporter Shefali S. Kulkarni selects interesting reading from around the Web.

Global Post  / PBS NewsHour: Groups Fighting HIV In D.C. Find Lessons In Africa

On a recent day not far from Capitol Hill and the White House, about a dozen HIV outreach workers toting bright yellow duffle bags stuffed with condoms and prevention information stood outside of the Anacostia Metro station. … After a couple of hours, they had handed out hundreds of packs of condoms — and had persuaded 21 people to take an HIV test with an oral swab in a Chevy van parked nearby. “You have to know your status, man. I’d rather be safe than sorry,” said Alvern Harris, 25, as he waited for his results. “What we do is a reflection to the younger generation. If we don’t, they won’t, and that’s another generation’s curse, another generation dying” (John Donnelly and Juliana Schatz, 6/12).

New York Times: Risky Rise Of The Good-Grade Pill

The boy exhaled. Before opening the car door, he recalled recently, he twisted open a capsule of orange powder and arranged it in a neat line on the armrest. He leaned over, closed one nostril and snorted it. Throughout the parking lot, he said, eight of his friends did the same thing. The drug was not cocaine or heroin, but Adderall, an amphetamine prescribed for attention deficit hyperactivity disorder that the boy said he and his friends routinely shared to study late into the night, focus during tests and ultimately get the grades worthy of their prestigious high school in an affluent suburb of New York City (Alan Schwarz, 6/9).

New York Times Magazine: How Do You Live Knowing You Might Have An Alzheimer’s Gene?

PET scan of the brain of a person with Alzheimer's disease howing a loss of function in the temporal lobe(M)any of these relatives have come together to be part of a large international study of families who carry an Alzheimer’s gene. The study, known as DIAN (for Dominantly Inherited Alzheimer Network), involves more than 260 people in the United States, Britain and Australia and includes at least 10 members of Doug and Gary’s family. Since 2008, researchers have been monitoring the brains of subjects who have mutations in any of three genes that cause Alzheimer’s to see how the disease develops before symptoms occur. By early next year, DIAN researchers plan to begin a new phase. Subjects will receive one of three experimental drugs that the researchers hope will slow or stop the disease in people otherwise destined to get it (Gina Kolata, 6/7).

American Medical News: Migrant Farmworkers: Medical Care For An Invisible Population

During the summer, internist Bruce Gould, MD, drives to the farm fields that stretch across Connecticut to see his patients. He arrives at night after the migrant farmworkers have finished harvesting tobacco. He examines them behind barns, at picnic tables or in makeshift exam rooms that consist of a folding massage table and a tarp roof. … The doctor helped establish the University of Connecticut’s mobile Migrant Farm Worker Clinic in 1997 to bring medical care to a severely underserved population. From June through October, medical students and physicians affiliated with the university volunteer at local farms, and try to manage chronic diseases, treat infections and mend injuries [Christine Moyer (6/11) – Photo:  John Nyberg].


This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

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PET scan of the brain of a person with Alzheimer's disease howing a loss of function in the temporal lobe

U.S. launches plan to prevent Alzheimer’s and improve care

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By Christian Torres

The Obama administration is moving forward with an ambitious, fast-moving agenda to improve the treatment of Alzheimer’s disease and unlock a method to prevent it by 2025.

The final draft of the plan, released today, also sets up a wide-ranging effort to improve the care that Alzheimer’s patients receive and support families.

I am not alone – alzheimers.gov

As many as 5.1 million Americans are diagnosed with Alzheimer’s disease, and that number could more than double in the next few decades, said Health and Human Services Secretary Kathleen Sebelius when she unveiled the plan at a National Institutes of Health summit on Alzheimer’s-related research.

The majority of the plan’s expected funding – $130 million over the next two years – will go toward NIH research, but another $26 million will go toward Alzheimer’s care and public awareness.

Chief among those is a government website, alzheimers.gov, also launched Tuesday. The site serves as a “one-stop shop,” Sebelius said, for patients and their families.

It features information on Alzheimer’s diagnosis, caregiver support, insurance coverage and clinical trials for new treatments.

A radio, TV and print campaign will promote the site beginning this summer and encourage families to plan ahead for the care of their loved ones.

The site will also serve as a resource for health care providers, featuring up-to-date information on how to diagnose and treat Alzheimer’s.

Sec. Kathleen Sebelius

Secretary Kathleen Sebelius

Sebelius noted that the health law requires Medicare providers to check patients for cognitive impairment during annual wellness visits, but it will be increasingly important for all providers to have guidelines for Alzheimer’s diagnosis and to look for signs of illness prior to age 65.

The online resources will complement several on-the-ground initiatives. Grants are being awarded this summer to educational centers that work with geriatricians, nurses and others to develop new curricula and training programs.

Sebelius said that the administration’s goal is to “improve the care, immediately, that people with the disease receive.”

In addition, the administration plans to evaluate how Alzheimer’s patients fare within new health care models, like the medical homes and accountable care organizations being promoted by the health law.

Reviews will focus on changes in patients’ cognitive function and on the efficiency of services provided. Work on that front is projected for completion by the end of this year.

It will take much longer, though, to find new treatments, or even a preventive treatment, for Alzheimer’s. NIH Director Francis Collins said Tuesday that study of the disease is “at an exceptional moment.”

He went on to announce two major research grants: one will evaluate a nasal spray that could improve patients’ brain function; the other will test a preventive medication among a large family in Colombia whose members have a genetic predisposition to Alzheimer’s.

Know where to turn: alzheimers.gov

The national plan for Alzheimer’s has been through several months of development since President Barack Obama signed the National Alzheimer’s Project Act in January 2011.

Funding, however, remains an issue. The administration announced in February it would devote $156 million over two years to the national plan.

Immediately, $50 million of already available NIH funds were transferred to Alzheimer’s-related projects. Another $80 million was requested as part of the president’s Fiscal Year 2013 budget, which has yet to be passed by Congress.

Much of the $26 million going toward Alzheimer’s care and awareness is also awaiting approval.

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This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

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Weekend Reading: Santorum’s flip on health reform, malpractice and EHRs, talking about AIDS and sex

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Every week, reporter Jessica Marcy selects interesting reading from around the Web.

Mother Jones: Santorum In ’93: More Government Needed in Health Care

Rick Santorum (Photo: Gage Skidmore)

If elected president, Santorum vows, he will end the “tyranny” of President Obama’s Affordable Care Act. Yet as an up-and-coming congressman in the early 1990s, Santorum took a much different line. Then—like now—health care was one of the nation’s most divisive issues. In 1993, Republicans were up in arms about a health care reform bill spearheaded by Hillary Clinton and pushed by President Bill Clinton. … During that fiery debate, Santorum said it would be a mistake to allow the delivery of health care services to be determined only by the market. He asserted that Republicans were “wrong” to let the marketplace decide how health care works. He instead argued that government should play a “proactive” role in shaping the health care marketplace “to make it work better” (Andy Kroll and Tim Murphy, 3/5).

The Atlantic: Making The Best Of What Is Often The Very Worst Time Of Our Lives (Book Excerpt)

As difficult as things are now, these may turn out to be the good old days. How we die is already a public health crisis, and care for people through the end of life is poised to become a generation-long social catastrophe. … Very soon, for the first time in human history, older people will outnumber younger people on our planet. In the United States, one in five adults is 65 or older. … Those of us who are concerned about long-term care have good reasons to worry. The nursing homes of the future — our future! — may make today’s nursing homes look like luxury hotels. It doesn’t have to turn out that way (Ira Byock, 3/7).

American Medical News: Legal Risks Of Going Paperless

System breaches. Modification allegations. E-discovery demands. These issues are becoming common courtroom themes as physicians transition from paper to EMRs, legal experts say. Not only are EMRs becoming part of medical negligence lawsuits, they are creating additional liability. … Studies are mixed about how EMRs will impact liability for physicians. … Whatever the future holds for EMRs, it’s important that doctors reduce their liability risks during system implementation, legal experts say. Being aware of potential legal pitfalls prevents doctors from falling victim to technology intended to do good — not cause hardship (Alicia Gallegos, 3/5).

The Daily Beast: Talking About Sex Is the Only Way To Stop HIV

[The United States has] been stuck at about 50,000 new infections each year for more than a decade. Compared with the challenges facing places like sub-Saharan Africa, our failure is particularly galling: we have plenty of drugs that work, the money and systems to administer them, and effective, if not particularly popular, ways to interrupt the spread (condoms, clean needles, abstinence). So why aren’t we doing better? The answer is blindingly simple: sex. Almost all HIV in the U.S. is spread by sexual intercourse, yet when faced with this fact, we act like a bumbling junior-high-school kid hearing about the birds and the bees for the first time. As a result, we have before us an unabated 30-year epidemic of a sexually transmitted disease (Kent Sepkowitz, 3/5).


This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

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PET scan of the brain of a person with Alzheimer's disease howing a loss of function in the temporal lobe

Weekend Reading: Interesting online health articles

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By Jessica Marcy

Every week, Jessica Marcy searches for interesting in-depth reading.

The Daily Beast: How Karen Handel’s Komen Resignation Boosts Her Political Prospects

Even if you put politics and ideology completely aside, Karen Handel had to resign from Susan G. Komen for the Cure. It’s hard to think of the last time an employee did so much damage to such a respected brand in so little time. … But while Komen will sustain long-term damage, Handel probably will be just fine. Yes, she’s lost her position as Komen’s vice president for public policy. But Handel has long had political aspirations, and she’s now a right-wing cause célèbre. When she ran for the Georgia Republican gubernatorial nomination two years ago, she was attacked for being insufficiently anti-abortion. That’s unlikely to happen again. “It’s kind of hard to criticize her now,” Joel McElhannon, a Georgia-based GOP strategist, told the Associated Press (Michelle Goldberg, 2/8).

TIME: New Criteria May Change Alzheimer’s Diagnosis

PET scan of the brain of a person with Alzheimer's disease howing a loss of function in the temporal lobeRecently revised guidelines for diagnosing Alzheimer’s disease would reclassify nearly all patients who are currently diagnosed with mild or very mild Alzheimer’s as having mild cognitive impairment (MCI), a new study finds. The change may be confusing for doctors and misleading for patients and their families, says Dr. John Morris, a neurologist at Washington University in St. Louis. Reporting in the journal Archives of Neurology, Morris finds that 99.8 percent of patients now diagnosed with very mild Alzheimer’s dementia would actually be considered to have MCI, according to the latest guidelines. Among patients with mild Alzheimer’s, 92.7 percent would be reclassified as having MCI (Alice Park, 2/8).

KHN summarized other news coverage on Alzheimer’s this week: Obama Administration Pledges $156 Million For Alzheimer’s Research And Care (2/8).

American Medical News: The Limits Of Treating Loved Ones

It was a busy day for the cardiologist. Between juggling patients, he received a phone call from his mother. She said she had heartburn and complained that none of the usual over-the-counter medications had helped. So the cardiologist quickly called in a prescription for her for an acid blocker and went back to seeing patients. Later that afternoon, his mother called again — this time from an emergency department. The doctors there said she had a heart attack. … Professional ethics policies have long warned about the perils of physicians treating themselves or family members. … Yet medical board officials say such rules are commonly violated by well-meaning physicians, either knowingly or unknowingly (Carolyne Krupa, 2/6).

Scientific American Mind: Thinking About Mortality Changes How We Act

The thought of shuffling off our mortal coil can make all of us a little squeamish. But avoiding the idea of death entirely means ignoring the role it can play in determining our actions. Consider the following scenario: … It’s the middle of the night when you are suddenly awakened from a deep sleep by the sound of screams and the choking smell of smoke. … [S]ome thoughts of death shore up our beliefs, and other types of reflection make us reexamine them. Which kind leads to a better life? For their experiment, Blackie and Cozzolino recruited volunteers aged 17 to 76 and primed them in different ways (Wray Herbert, 2/6).

The New Yorker: Out The Window

Today is January, midmonth, midday, and mid-New Hampshire, and the writer sits in his blue armchair looking out the window. He is eighty-three. He teeters when he walks, he no longer drives, he looks out the window and watches birds come to his feeder. … The cow barn forty yards away was built in 1865, and he gazes at it every day of the year. His mother turned ninety in the Connecticut house where she had lived for almost sixty years, and she spent her last decade looking out the window. She died in a nursing home one month short of ninety-one. A year later, Jane, the writer’s wife, at forty-seven, was dying of leukemia (Donald Hall, 1/23).

Newsweek/Chicago Tribune: Life With Trig: Raising A Special-Needs Child

A diagram showing the chromosomal rearrangement that causes Down's syndrome.Families of children with special needs are bonded by a shared experience of the joys, challenges, fears, and blessings of raising these beautiful children whom we see as perfect in this imperfect world. … When I discovered early in my pregnancy that my baby would be born with an extra chromosome, the diagnosis of Down syndrome frightened me so much that I dared not discuss my pregnancy for many months. All I could seem to muster was a calling out to God to prepare my heart for what was ahead. My prayers were answered beyond my shallow understanding of what true joy could be (Sarah Palin, 2/9).


This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

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Check list

Tips for buying long-term care insurance

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By Caroline E. Mayer

Determine if you qualify financially

Washington state has prepared a guide to buying long-term care insurance

Don’t buy if the out-of-pocket cost for the coverage would be more than you can afford. Consumer Reports advises people that if their net worth, excluding their home, is below $300,000, long-term care insurance is not a good buy for them.

The National Association of Insurance Commissioners also recommends that consumers spend no more than 5 percent of their income on a long-term care policy.

If you need long-term care but have few financial resources, Medicaid should quickly kick in to pay, although that will probably limit your choices for care.

On the other hand, if you have a lot of resources (some financial advisers put that threshold at $2 million), you may be able to self-insure and pay the costs as they arise, thereby eliminating the need to buy a policy.

Shop around.

Unlike car insurance where you can switch carriers easily, it can be expensive to change long-term care policies because the premiums increase as you age and you lose the investments already made. Comparison shopping is critical.

Some companies and associations (such as alumni groups and AARP) offer group policies with relatively liberal eligibility, making it easier to obtain coverage if the policyholder has any health issues.

However, these policies may have more limited benefits than individually purchased plans.

If you are young or in excellent health, a group plan may also be more expensive; you may end up paying more to subsidize your less healthy peers.

And if you are certain you want LTC insurance, the younger you are, the better. Your annual premiums will be smaller, and you have less chance of being denied for health reasons.

Know what’s covered.

Policies differ greatly so know what you are buying:

    • What services are covered?
    • How long is the disability period before benefits kick in and what happens if you move from one facility to another?
    • How much does the policy pay per day for nursing home care, home-health care and assisted living?
    • How long will benefits last?
    • Is there an inflation adjustment that anticipates rising medical costs as you age?
    • How long are benefits extended (one, three or five years, or indefinitely)?
    • Who determines benefit eligibility — your doctor, or the insurance company’s doctor — and on what basis?
    • Are preexisting conditions excluded?
    • Does the policy cover mental or nervous disorders, alcoholism, drug abuse or self-inflicted injuries?

The National Association of Insurance Commissioners advises consumers to look for policies that include at least one year of nursing home or home health care coverage, including intermediate and custodial care; coverage for Alzheimer’s disease; inflation protection; a guarantee that the policy cannot be terminated because you get older or your health deteriorates; no requirement that the beneficiary has to first be hospitalized to receive benefits and a 30-day cancellation period after purchase.

Check out the insurance company.

Review a carrier’s record with your state insurance commissioner’s office. Find out how long it has been in business its complaint record and history of raising rates. Stick with a company that has an A financial rating.

Also, the National Association of Insurance Commissioners and the American Association for Long-Term Care Insurance have consumer guides on their Web sites.

The Department of Health and Human Services provides extensive information on it’s website, longtermcare.gov.

KHN wants to hear from you: Contact Kaiser Health News


This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

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Health stories in the news

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Illustration comparing normal brain with a brain of a patient with Alzheimer's disease

Researchers share data to tackle Alzheimer’s disease

Researchers who usually keep their findings secret until they are ready to publish their research are freely sharing their data as part of a initiative to find effective Alzheimer’s treatments, writes Gina Kolata in today’s New York Times.

“It was unbelievable,” said Dr. John Q. Trojanowski, an Alzheimer’s researcher at the University of Pennsylvania. “It’s not science the way most of us have practiced it in our careers. But we all realized that we would never get biomarkers unless all of us parked our egos and intellectual-property noses outside the door and agreed that all of our data would be public immediately.”

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Seattle family copes with child’s relentless, incurable brain disease

Seattle Times health reporter Carol Ostrom profiles a family with a daughter born with a rare metabolic disorder called Sanfilippo syndrome.

Typically, children with the rare disorder die before their late teens after a relentless degeneration robs them of their cognitive functions, their ability to talk, walk and even chew. There is no treatment.

Ostrom describes the family’s years of uncertainty due to repeated misdiagnoses of their daughter’s condition and their efforts to help researchers find effective treatments.

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Battle for beds in southeast King County

    Rob Carson, staff writer for The Tacoma News Tribune, reports on the PR battle over who gets to expand and add hospital beds in southeast King County.
    Carson writes:

      Tacoma’s giant MultiCare Health System, locked in a struggle with Auburn Regional Medical Center and Valley Medical Center to expand in the rapidly growing area, has pulled out all the stops with its public-relations machine.

    The prize?

      What’s at stake in the competition is access to thousands of underserved patients who live west of Interstate 5 and north of the Pierce-King county line.

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    Illustration by Zoran Ozetsky

    Health stories in the news

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    Illustration by Zoran Ozetsky

    News round up

    Vets with PTSD need community services

    In an op-ed piece in today’s Seattle Times, David R. Stone, CEO of social services organization Sound Mental Health, says the Veterans Affairs Administration will not be able to provide the help needed by the estimated one in five Iraq and Afghanistan war veterans who will suffer from post-traumatic stress disorder.

    “The VA is an institution-based care system and was never intended to meet the needs of 300,000 victims of PTSD. These veterans and their families will be much better served by the national network of outpatient community mental-health providers already in existence . . . .

    “It is incumbent upon us to demand that appropriate community-based services be made available to these brave folks who — through no fault of their own — are bringing the war home with them. We owe them that much, and we should not sleep until we pay that debt … so they can sleep better as well.”

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    Credit: “@” Illustration by Zoran Ozetsky.

    Spinal tap test for Alzheimer’s disease

    Researchers have shown that a spinal fluid test can accurately predict whether a person with memory problems is going to go on to develop Alzheimer’s disease, writes Gina Kolata in today’s New York Times.

    Kolata writes:

    So the new results also give rise to a difficult question: Should doctors offer, or patients accept, commercially available spinal tap tests to find a disease that is yet untreatable? In the research studies, patients are often not told they may have the disease, but in practice in the real world, many may be told.

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    Seal of the U.S. Department of LaborAre hospitals shortchanging staff on overtime pay?

    The federal investigators are looking into the pay practices throughout the healthcare industry after finding that many hospitals and nursing homes do not pay the overtime due to nurses and other staff who work more than 40 hours a week, writes New York Times reporter Robert Pear.

    Pear writes:

    “Hospitals around the country have paid millions of dollars in back wages to settle claims by the government and their employees. And many more hospitals are fighting class-action lawsuits that raise the same issues.”

    To enforce the labor rules governing overtime pay, Labor Department has hired 250 new wage-and-hour investigators, Pear writes.

    “The Fair Labor Standards Act generally requires that employees be paid at least the federal minimum wage of $7.25 an hour, as well as one-and-a-half times their regular rates of pay for hours worked beyond 40 a week.”

    To learn more:

    Local Resources:

    Thumbnail Illustration by Zoran Ozetsky.

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