The eye in the room
By Paula Span
KFF
The assisted-living facility in Edina, Minn., where Jean Peters and her siblings moved their mother in 2011, looked lovely. “But then you start uncovering things,” Peters said.
Her mother, Jackie Hourigan, widowed and developing memory problems at 82, too often was still in bed when her children came to see her mid-morning.
“She wasn’t being toileted, so her pants would be soaked,” said Peters, 69, a retired nurse-practitioner. “They didn’t give her water. They didn’t get her up for meals.” Her mother dwindled to 94 pounds.
Most ominously, Peters said, “we noticed bruises on her arm that we couldn’t account for.” Complaints to administrators — in person, by phone, and by e-mail — brought “tons of excuses.” So Peters bought an inexpensive surveillance camera. She and her sisters installed it atop the refrigerator in her mother’s apartment, worrying that the facility might evict her if the staff noticed it.
Monitoring from an app on their phones, the family saw Hourigan going hours without being changed. They saw and heard an aide loudly berating her and handling her roughly as she helped her dress.
They watched as another aide awakened her for breakfast and left the room even though Hourigan was unable to open the heavy apartment door and go to the dining room. “It was traumatic to learn that we were right,” Peters said.
After filing a police report and a lawsuit, and after her mother’s 2014 death, Peters in 2016 helped found Elder Voice Advocates, which lobbied for a state law permitting cameras in residents’ rooms in nursing homes and assisted-living facilities. Minnesota passed it in 2019.
Though they remain a contentious subject, cameras in care facilities are gaining ground. By 2020, eight states, including Washington, had joined Minnesota in enacting laws allowing them. According to the National Consumer Voice for Quality Long-Term Care, the other states are Illinois, Kansas, Louisiana, Missouri, New Mexico, Oklahoma, and Texas.
The legislative pace has picked up since, with nine more states enacting laws– Connecticut, North Dakota, South Dakota, Nevada, Ohio, Rhode Island, Utah, Virginia, and Wyoming. Legislation is pending in several others.
California and Maryland have adopted guidelines, not laws. The state governments in New Jersey and Wisconsin will lend cameras to families concerned about loved ones’ safety.
The American Health Care Association, whose members are mostly for-profit long-term care providers, doesn’t take a national position on cameras.
A few camera laws cover only nursing homes, but the majority include assisted-living facilities. Most mandate that the resident (and roommates, if any) provide written consent. Some call for signs alerting staffers and visitors that their interactions may be recorded.
On its website, the Washington State Long-term Care Ombudsman Program, which advocates for residents, states, “While surveillance cameras and other devices can offer information about the type of care” a resident is receiving and how they are being treated “by nursing home staff, other residents, and visitors, they can be invasive and may violate” privacy rights. They are also no substitute for personal involvement and monitoring.”
The laws often prohibit tampering with cameras or retaliating against residents who use them, and include “some talk about who has access to the footage and whether it can be used in litigation,” said Lori Smetanka, executive director of the National Consumer Voice.
It’s unclear how seriously facilities take these laws. Several relatives interviewed for this article reported that administrators told them cameras weren’t permitted, then never mentioned the issue again. Cameras placed in the room remained.
During the COVID-19 pandemic, families were locked out of facilities for months, Smetanka pointed out. “People want eyes on their loved ones,” she said.
Changes in technology probably also contributed, as Americans became more familiar and comfortable with video chatting and virtual assistants. Cameras have become nearly ubiquitous — in public spaces, in workplaces, in police cars and on officers’ uniforms, in people’s pockets.
Initially, the push for cameras reflected fear about loved ones’ safety. Kari Shaw’s family, for instance, had already been victimized by a trusted home care nurse who stole her mother’s prescribed pain medications. So when Shaw, who lives in San Diego, and her sisters moved their mother into assisted living in Maple Grove, Minn., they immediately installed a motion-activated camera in her apartment.
Their mother, 91, has severe physical disabilities and uses a wheelchair. “Why wait for something to happen?” Shaw said.
In particular, “people with dementia are at high risk,” added Eilon Caspi, a gerontologist and researcher of elder mistreatment. “And they may not be capable of reporting incidents or recalling details.”
As the debate over cameras continues, a central question remains unanswered: Do they bolster the quality of care?
“There’s zero research cited to back up these bills,” said Clara Berridge, a gerontologist at the University of Washington who studies technology in elder care. “Do cameras actually deter abuse and neglect? Does it cause a facility to change its policies or improve?”
Both camera opponents and supporters cite concerns about residents’ privacy and dignity in a setting where they are being helped to wash, dress, and use the bathroom.
“Consider, too, the importance of ensuring privacy during visits related to spiritual, legal, financial, or other personal issues,” Lisa Sanders, a spokesperson for LeadingAge, said in a statement.
Though cameras can be turned off, it’s probably impractical to expect residents or stretched-thin staffs to do so.
Surveillance can treat staff members as “suspects who have to be deterred from bad behavior,” Berridge said. She has seen facilities installing cameras in all residents’ rooms, meaning “Everyone is living under surveillance. Is that what we want for our elders and our future selves?”
Ultimately, experts said, even when cameras detect problems, they can’t substitute for improved care that would prevent them — an effort that will require engagement from families, better staffing, training and monitoring by facilities, and more active federal and state oversight.
“I think of cameras as a symptom, not a solution,” Berridge said. “It’s a band-aid that can distract from the harder problem of how we provide quality long-term care.”
Source: KFF Health News, produced for The New Old Age, a partnership with the New York Times.
