Illustration: Emily Nizzi, USA TODAY Network
At the end of her life, Bernadine Wick was lost in her own mind, and her world was full of terrors.
She sometimes believed that she had been kidnapped, that she was in a "dark cave."
She suffered physical misery, too. A bacterial infection inflamed her swollen calves. The pain, a doctor said, must have felt as if her legs were broken. She had a urinary tract infection that had been raging for months.
She was sitting alone in her room watching a baseball game when she noticed the other woman in a wheelchair coming into her room – Joann Thompson, a resident who was known to wander the halls of their shared residence, Bethesda Gardens. Bernadine grabbed two wire hangers.
She beat Joann on the head and hands.
Joann died six days later.
Bernadine would not live much longer. After the attack, she was hustled off to the only facility that would take her — a place where her daughter said she suffered poor care.
Assisted living facilities and nursing homes are supposed to keep residents safe, but hundreds of seniors contend with violence at the ends of their lives.
Dementia is often blamed for altercations, but that is not because all people with dementia are inherently aggressive.
They may act out when frightened, confused or in pain. Some hurt others because of behavioral problems that facilities are not equipped to manage.
Experts say it doesn't have to be this way. There are tangible steps that regulators, facilities, staff members, doctors and loved ones can take to prevent residents from hurting each other.
Here are 10 things that can be done to better prevent resident-on-resident harm.
Senior living facilities should be careful who they select in the first place
Experts say preventing violence starts with the admissions process. Facilities should be careful about accepting new residents who might put others at risk.
"Residents die because of a lack of a meaningful pre-admission screening," said Eilon Caspi, a researcher who has studied resident-on-resident harm for decades. "Because they were admitted and they should have never been and they were because it was good for the bottom line. And then there is trauma and tragedy and everybody’s shocked but they shouldn't be shocked. Because it was predictable."
In Bernadine's case, an employee at Bethesda Gardens wrote to her manager that she wasn't sure if Bethesda Gardens was a good fit for her before she bit, punched and used a fork to stab other residents.
But admissions processes are not just for limiting who comes in — they are also vital for establishing good care plans for new residents.
Kris Woolley, who founded Avista Senior Living, which operates assisted living facilities in several states, said it is important to set up residents from the moment they are admitted with a care plan that fulfills their specific wants and needs.
"I want anybody walking into our facilities to feel the love," Woolley said. "And that starts even before (the resident) moves in. The discovery is not just 15 minutes, it's not even just an hour. It's often multiple visits where, on the front end, we're getting to know whomever this potential resident is."
Staff at senior living facilities need to know their residents
Caspi said knowing specifics about residents and offering meaningful engagement is one of the most important things facilities can do to prevent residents from getting upset and hurting their peers.
That involves making sure employees know each resident's life story and can tailor activities to their interests. It involves having a robust recreation department that offers something specific for each resident to meet their emotional, psychological, physical, medical and spiritual needs.
"That's when you're going to see the most dramatic reduction in incidents," Caspi said.
In the memory care unit of Desert Willow Assisted Living and Memory Care in north Phoenix, residents have nooks outside their doors decorated with their belongings which helps them feel a sense of familiarity.
They also have easy access to an outdoor patio, which can help alleviate the sense of being boxed in — a feeling that can trigger a resident. And the doors that lead out of the memory care unit are made to look like bookshelves. This prevents residents from seeing a door they are not able to open and becoming frustrated.
The director, Dannis Murphy, said it's important that every employee knows each resident, understands the dynamics between residents and also knows where each resident is at all times.
"There's a whole balance of trying to figure out the best way to deal with each individual," Murphy said. "We do a 100 things about me page. So each caregiver is trying to write down everything they know. This resident loves to fish, loves the Pittsburgh Pirates, loves Broadway shows — whatever it is that we can utilize to calm them down."
If you can get a resident thinking about their interests, he said, they forget they were mad.
Residents should have their own private space
Unwanted visitors and roommate disputes cause some of the most severe — and avoidable — altercations between residents.
Many experts The Arizona Republic talked to agreed: Residents of assisted living facilities and nursing homes should have their own space, and that space should be closely watched. The standard of care should be private bedrooms — a standard that's absent at many facilities — and staff should be consistently alert and on the lookout for residents who may have wandered into others' rooms.
Joann and Bernadine had their own rooms at Bethesda Gardens, but residents were also allowed to wander freely.
Joann moved into Bethesda Gardens after her previous facility told her daughter they couldn't monitor her constant wandering habits without a hefty price hike for her care.
Joann's daughter had no idea one of Bethesda Gardens' residents, Bernadine, had a mandate to prevent others from wandering into her room. Bernadine's daughter had even asked the facility to put a lock on the door because she knew her mom was afraid of visitors.
The facility agreed to keep watch over Bernadine's room.
But in an instant, when an employee left his post to get water, Joann wheeled into Bernadine's room.
The Republic found about two dozen altercations over the last several years prompted by a resident entering another resident's room.
At Aurora Place Assisted Living in Apache Junction, a 90-year-old man was punched in the face several times because he accidentally entered the wrong apartment. A caregiver told police they'd had to redirect him before.
At Devon Gables Rehabilitation Center in Phoenix, a resident punched a man who entered his room because, he said, the man was always showing up, according to a state report.
A resident at Scottsdale Memory Care had a habit of stealing things from another woman's room. The woman got fed up one night and pushed her intruder to the ground where she hit and cut her head, according to the police report.
Keeping residents from wandering into others' rooms is a big challenge, said Chrissy Hall, the regional director of operations for Seasons Living, an assisted living facility operator with locations in Arizona.
Putting locks on doors just doesn't work when it comes to residents with dementia.
"They're not going to remember that they have a key. In my tenure we’ve tried a number of times ... to give them keys and we’ve probably gone through 50 keys because nobody remembers," she said. "During the day, you want them to have access to their room, their own bathroom, their own personal items. But if they walk into their room and someone follows them in, which can happen at any moment, you could have an altercation."
She said it comes down to having a good team who knows who wanders and remains observant.
Facilities could try a few additional measures to prevent these altercations.
The analog route: One former nursing home administrator suggested putting flags on the back of the wheelchairs of residents who they need to keep a closer watch on. Though Hall doubted the efficacy of that.
The high-tech route: Invest in software. There is technology that alerts staff when a resident enters another resident’s room or even when residents get out of bed.
Wooley's facilities use an artificial intelligence product that alerts staff when a resident falls.
Without that?
"Somebody could fall in the middle of the night and they could be lying on the floor, bleeding and unconscious until the morning when somebody gets there," Woolley said.
Facilities should be fully staffed and staff should be properly trained
Nearly a year after a resident killed another resident at Bethesda Gardens, the north Phoenix facility was cited for hiring people without verifying that they were qualified. One employee's references and employment history had even been left blank on their application.
No public data exists to show if Bethesda Gardens was fully staffed, however.
Without enough staff in congregate care settings to keep an eye on residents, they can sometimes wander into each other's rooms unattended. When staff is stretched thin, every staff member must work more quickly to carry out important tasks like administering medications, bathing residents, changing adult diapers and moving residents into beds or wheelchairs.
In a nutshell, less staff often means less adequate care. Less adequate care leaves residents vulnerable to harm from each other.
It's not just the amount of staff but also their level of training. Caregivers must be given ongoing, specific training to recognize, prevent and deescalate violent incidents. Several family members, academic experts and staff members approached by The Republic called for improved and more consistent training in nursing homes and assisted living facilities.
In order to make that possible, facilities also need to reduce turnover. Working with seniors is a difficult job, and the challenges staff members face need to be recognized and addressed — including with better pay — if facilities have any hope of maintaining a well-trained, engaged and attentive workforce.
“It is stressful, it's often thankless and there is often a high turnover of these underpaid positions,” said Dr. Jordan Karp, professor and chair for the department of psychiatry at University of Arizona. “Providing better pay to folks that are working and taking care of the most vulnerable people in our life (is something) we need to be thinking about because it's really a systems approach to optimizing care homes.”
Companies that own facilities need to be transparent about how much money they make and how much is spent on caring for seniors
Nursing homes must report financial statements to the Centers for Medicare and Medicaid Services, unlike assisted living facilities, but reporting regulations still allow the companies that own them to cloak how much they make from running a facility.
Many nursing homes are owned by large for-profit corporations, some backed by private equity investors — but that's not always clear from the ownership information they report to CMS. Often, a facility's owners are subsidiaries of a larger company, which in turn, can be owned by an even larger company. While CMS' enrollment forms require facilities to report every level of existing ownership, facilities don't always do that. A U.S. Government Accountability Office report from January said CMS is working on assessing the accuracy of the ownership information they get, but that it's unclear whether those efforts will actually fix the problem.
CMS has the power to deactivate or revoke a provider’s enrollment if they fail to report their ownership in entirety — but they rarely do so, said Charlene Harrington, professor emerita of sociology and nursing at University of California San Francisco.
Even when it's clear that a facility is owned by a chain or a private equity firm, it's difficult — sometimes impossible — to figure out how much money those owners are making. CMS doesn't require nursing home owners to submit consolidated cost reports, which are financial statements that would reveal the total amount of money an owner makes from all its subsidiaries.
When companies are permitted to obfuscate their profit reporting, it makes it harder to determine whether the dollars they're making are going toward improving residents' lives, or lining owners' pockets.
The answer, researchers say, lies at least partially in bolstering regulations.
In a policy paper released in April, Harrington and co-author Toby Edelmen, a senior policy attorney with the Center for Medicare Advocacy, say CMS should ensure nursing homes' ownership information is complete, accurate and transparent. Better screening owners, they say, could help increase the overall quality of nursing home care.
They say CMS should require facilities to submit related-party profits in audited cost reports, and their owners should submit consolidated financial information. Financial transparency would make it easier to determine how government funds are being spent. CMS, in turn, should also place ceilings on profit and require a percentage of the money made to be spent on direct care as is already happening in New York, New Jersey, Pennsylvania and Massachusetts.
"The oversight is very lax and weak, so we don't have transparency of ownership, we don't have transparency of financials," Harrington said. "You could have all kinds of problems. And because they're doing so little oversight, no one would probably notice."
Diagnosis should be early and accurate
A psychiatrist who conducted a memory test said Bernadine's post-traumatic stress disorder was the worst case he'd ever seen in a senior.
But countless others never even receive such a diagnosis. Then police sometimes categorize residents as having "memory issues" or broadly generalized terms like "mental illness" without knowing what specific conditions they actually have.
Diagnosing forms of dementia like Alzheimer's, specific mental illnesses such as schizophrenia or PTSD and other conditions that affect cognition and mobility can be difficult. Many patients experience similar initial symptoms despite different underlying causes.
Experts say it's important not to conflate dementia and mental illness, and equating them can impede access to care. That said, many patients experience multiple conditions in tandem, and it's vital for physicians and caregivers to understand those overlaps.
How to speed up diagnosis and treatment? The late-life workforce should have access to better training aimed at picking up on the behavioral and cognitive changes associated with the early onset of diseases like Alzheimer's. And patients should have better access to the physical tests that make diagnosing Alzheimer's possible.
PET scans and spinal taps aren't cheap. While some experts hope that innovations in biomarker and blood testing will eliminate the need for such invasive and expensive tests, the medical system should still improve access for patients who want them in the meantime. Clinical trials can help, too; doctors should work to communicate options to patients and families.
In addition, if someone is scared or embarrassed to express how they're feeling, it can be impossible for medical professionals to successfully diagnose and care for them. That barrier is worsened by the persistent stigma around many of the conditions that can lead to aggression or violence. Caregivers, relatives and others should work to remove that stigma by being sensitive to people's needs and mindful of the language used to describe them.
Incidents should be reported in a timely and transparent manner
Standards should be put in place for nursing homes and assisted living facilities alike to document and report instances of resident-on-resident harm.
Nursing homes are required to report injuries because they are federally regulated, but the Centers for Medicaid and Medicare Services does not track resident-on-resident harm in a way that allows for meaningful study and reform.
Assisted living facilities are state regulated, so what they're required to report depends on where they are based. Most states require these facilities to report resident injuries, but Arizona does not.
Some states, including Idaho and Delaware, explicitly call for resident-on-resident harm to be reported.
Arizona should join the ranks of states that accurately track assisted living injuries. The problem can only be managed if it’s measured.
Caregivers should always know what medications residents are taking
As police and paramedics tried to save Joann Thompson, they were stunned to find that caregivers couldn’t even say whether she was on blood thinners.
Caregivers are required to use a detailed medication response log when working with people with intellectual and developmental disabilities, because that population may respond differently to certain drugs. But using a systematic approach to see if medications are working — in other words, writing up detailed, time-coded data linking dosages and responses — is one of the easiest and most effective ways to improve patient care for any population, said Liz Carr, a direct support professional who has worked with the developmental disabilities population for many years and also helps train other caregivers in the field.
In addition, reducing turnover or improving training for caregivers can help facilities notice whether people are receiving the right medications because highly engaged staff know their residents well and can pay better attention to their behaviors.
Assisted living facilities and nursing homes should be designed to keep residents safe
When it comes to memory care units or assisted living facilities that serve dependent communities, the environment itself should be curated for people with dementia or other conditions that affect mobility and cognition.
That means designing with residents in mind — thinking about how everything from the architecture of the building to the decor in rooms might be perceived by the people who will be living there.
A building where an entire corridor can be overseen from any point in the care unit is better for staff to keep watch than hospital-like buildings with long or L-shaped hallways.
It also means adjusting certain objects that can be used to injure others, a common theme that recurs in this project's violence database. Staff should be aware if a resident has personal effects that could cause serious harm or if a particular object, such as a game or toy, has become the subject of a disagreement. But staff must also walk a fine line between affording residents dignity and removing objects that could be harmful, and they should be attuned to specific individuals' needs.
Finally, if a resident reports that they have been assaulted, violated or otherwise harmed, believe them. Acknowledge that they have experienced something distressing, and give them the basic right to dignity — just as any person would want and deserve.
Residents who have hurt people deserve to be treated with dignity
After Bernadine attacked Joann, her daughter had little choice in where her mom could live going forward. A social worker found a facility that would take her — but it wasn't what her daughter wanted.
Conditions were dire.
Bernadine needed a liquid diet, but staff at the new facility brought her solid food. "I hungry, I hungry," Bernadine would say when her family visited.
"One time when my brother and I visited mom, she smelled so bad I put my COVID mask on," Bernadine’s daughter said. "Her clothing was saturated with urine, from her armpits to her knees. I pointed this out to the caregiver, but it took four hours before someone came to change mom."
By the next visit, Bernadine's bedsores had nearly eroded her flesh to the bone.
Her daughter moved Bernadine to a different facility that she liked after a couple of months. She died shortly after.
"My mother hated injustice and always rooted for the underdog," her daughter said. "She would have loved to play a part in reforming the elder care system, to banish neglect & abuse, but she NEVER would have chosen the role she was given."
Caitlin.Mcglade@arizonarepublic.com, Melina.Walling@azcentral.com, sjayaraman@gannett.com