Concerns about safety in assisted living facilities across the country have made national news and led some lawmakers in Washington, D.C., to question the need for more federal oversight. In Arizona, similar concerns resulted in Gov. Katie Hobbs signing comprehensive, bipartisan legislation aimed at reforming care in assisted living facilities.
Hobbs’s message was loud and clear: "We have a responsibility to ensure the health and safety of all Arizonans. And this legislation is just the first of many steps that it will take to get there."
That law now requires the Arizona Department of Health Services to define and create standards for memory care services for assisted living facilities. That's because until now, the term “memory care” was more for marketing purposes. The law also mandates specialized dementia training for staff working in those communities, it doubles fines and restricts facilities from hiring individuals on the Adult Protective Services registry.
'I will never forget that'
There are roughly 1900 assisted living facilities in the state. And it was in one of those facilities where Cathy McDavid Mazur’s mother, Joann Thompson, was assaulted by another resident in 2021.
"And I said, ‘assaulted!’ And I literally entered the room, and I see my mom on the gurney and she is just brutally beaten. And I will never forget that."
Thompson had Alzheimer’s disease. On that day, she wandered into the room of her assailant, who, according to McDavid Mazur, had a history of harming other residents.
"She’d just looked like somebody carved her face up with an ice pick. She had bloody gauze … gauze that was just bloody; her hair, it was all blood, her hand …"
The layers of skin on her right hand had been completely ripped off, revealing bone and muscle.
"I never dreamed in a million years, when I put my mom in that facility, that this would happen. You trust them, you know? I'm not trying to plead my case, I'm just saying, you trust them to take care of your elderly, and that your elderly will be safe," says McDavid Mazur.
Thompson passed away six days later. Her death was ruled a homicide by the medical examiner.
Since then, McDavid Mazur has become an advocate for families and their loved ones in long-term care. And it was her mother’s story that helped get that bill across the finish line.
Now that it is, will it be enough?
Not a health-care provider
"This is not the first time that people have talked about the need for improvement in assisted living," says Sheryl Zimmerman, the executive director of the National Center for Excellence in Assisted Living, or CEAL.
"Obviously there have been some new events that have come up, and come to the attention of the media, very important things, right? People with dementia who are wandering and some who died because of that. Situations where someone could be abused by someone," Zimmerman said.
CEAL was formed in 2003 after the U.S. Special Committee on Aging tasked consumers, long-term care professionals and providers to come up with recommendations that would lead to more uniform guidance.
Because even then, there were concerns about resident care and safety in assisted living.
Today, assisted living is the largest provider of long-term residential care for people living with dementia in the U.S. Yet, unlike nursing homes, assisted living isn’t a health-care provider.
"But it does provide health-care services. That's been one of the areas of confusion over time, it began very much as a hospitality model," explained Zimmerman.
It was created for more well-to-do folks who needed minor support versus help with activities of daily living, like bathing.
Over the years, some states have made efforts to improve care in assisted living, but there’s no national standard. Zimmerman recently led a panel of clinicians and long-term care experts who developed recommendations that, if implemented, could help standardize medical and mental health care in these communities.
"Some are lower hanging fruit, some are higher hanging fruit. The higher hanging fruit would be those that, for example, require you to have a nurse — it is beneficial if you have a nurse," Zimmerman said.
Which many already do, she says. Top recommendations include training on dementia care and seeing the individual as a person versus a diagnosis. Clearer communication, regular resident assessments, and policies and procedures regarding aggressive or other behaviors were also at the top.
"Because I wouldn't have dreamed about asking, 'what's your protocol if somebody hurts my mom or sexually assaults my mom?' Or, you know, what if my mom hurt somebody? Do you inform families? I mean, there's so many questions I never dreamed of asking, but I think people should be informed," Zimmerman said.
What's next?
Nationally, lawmakers from the Senate Committee on Aging once again gathered earlier this year, asking if the federal government should have a role in providing some oversight in assisted living. And in Arizona, advocates, including McDavid Mazur, say they’re not done.
"I wanted more, everybody wanted more," says McDavid Mazur. "But, you know, you're going to take a win because I think we can build on it."
And they appear to have an ally: Republican Rep. Tim Dunn sponsored the bill Hobbs signed into law and he seemed to echo Hobbs' earlier promise: "This is the long game. You have to be continually chipping away at this; it's like I tell folks, 'how do you eat an elephant?' It's one bite at a time."