When the eye on older patients is a camera, privacy and cost issues emerge
New monitoring technology is helping family caregivers manage the relentless task of looking out for older adults with cognitive decline. But it's not an option for everyone.
In the middle of a rainy Michigan night, 88-year-old Dian Wurdock walked out the front door of her son’s home in Grand Rapids, barefoot and coatless. Her destination was unknown even to herself.
Wurdock was several years into a dementia diagnosis that turned out to be Alzheimer’s disease. By luck, her son woke up and found her before she stepped too far down the street. As the Alzheimer’s progressed, so did her wandering and with it, her children’s anxiety.
“I was losing it,” said her daughter, Deb Weathers-Jablonski. “I needed to keep her safe, especially at night.”
Weathers-Jablonski installed a monitoring system with nine motion sensors around the house — in her mother’s bedroom, the hallway, kitchen, living room, dining room and bathroom and near three doors that led outside. They connected to an app on her phone, which sent activity alerts and provided a log of her mother’s movements.
“When I went to bed at night, I didn’t have to guess what she was doing,” Weathers-Jablonski said. “I was actually able to get some sleep.”
New monitoring technology is helping family caregivers manage the relentless task of looking out for older adults with cognitive decline. Setting up an extensive monitoring system can be expensive — Weathers-Jablonski’s system from People Power Co. costs $299 for the hardware and $40 a month for use of the app. With scores of companies selling such gear, including SentryTell and Caregiver Smart Solutions, they are readily available to people who can pay out-of-pocket.
But that’s not an option for everyone. While the technology is in line with President Joe Biden’s plan to direct billions of dollars toward helping older and disabled Americans live more independently at home, the costs of such systems aren’t always covered by private insurers and rarely by Medicare or Medicaid.
Monitoring also raises ethical questions about privacy and quality of care. Still, the systems make it possible for many older people to stay in their home, which can cost them far less than institutional care. Living at home is what most people prefer, especially in light of the toll the covid-19 pandemic took on nursing homes.
Technology could help fill a huge gap in home care for the elderly. Paid caregivers are in short supply to meet the needs of the aging population, which is expected to more than double in coming decades. The shortage is fueled by low pay, meager benefits and high rates of burnout.
And for the nearly 1 in 5 U.S adults who are caregivers to a family member or friend over age 50, the gadgets have made a hard job just a little easier.
Passive surveillance systems are replacing the “I’ve fallen and I can’t get up” medical alert buttons. Using artificial intelligence, the new devices can automatically detect something is wrong and make an emergency call unasked. They also can monitor pill dispensers and kitchen appliances using motion sensors, like EllieGrid and WallFlower. Some systems include wearable watches for fall detection, such as QMedic, or can track GPS location, like SmartSole’s shoe insoles. Others are video cameras that record. People use surveillance systems like Ring inside the home.
Some caregivers may be tempted to use technology to replace care, as researchers in England found in a recent study. A participant who had visited his father every weekend began visiting less often after his dad started wearing a fall detector around his wrist. Another participant believed her father was active around the house, as evidenced by activity sensor data. She later realized the app was showing not her father’s movement, but his dog’s. The monitoring system picked up the dog’s movements in the living room and logged it as activity.
Technology isn’t a substitute for face-to-face interaction, stressed Crista Barnett Nelson, executive director of Senior Advocacy Services, a nonprofit group that helps older adults and their families in the North Bay area outside San Francisco. “You can’t tell if someone has soiled their briefs with a camera. You can’t tell if they’re in pain, or if they just need an interaction,” she said.
In some instances, people being monitored changed their habits in response to technology. Clara Berridge, a professor of social work at the University of Washington who studies the use of technology in elder care, interviewed a woman who stopped her usual practice of falling asleep on the recliner because the technology would falsely alert her family that something was wrong based on inactivity deemed abnormal by the system. Another senior reported rushing in the bathroom for fear an alert would go out if they took too long.
The technology presents another worry for those being monitored. “A caregiver is generally going to be really concerned about safety. Older adults are often very concerned about safety too, but they may also weigh privacy really heavily, or their sense of identity or dignity,” Berridge said.
Charles Vergos, 92 and living in Las Vegas, is uncomfortable with video cameras in his house and wasn’t interested in wearing gadgets. But he liked the idea that someone would know if something went wrong while he was alone. His niece, who lives in Palo Alto, California, suggested Vergos install a home sensor system so she could monitor him from afar.
“The first question I asked is, does it take pictures?” Vergos recalled. Because the sensors don’t have a video component, he was fine with them. “Actually, after you have them in the house for a while, you don’t even think about it,” Vergos said.
The sensors also have made conversations with his niece more convenient for him. She knows he likes to talk on the phone while he’s in his chair in the den, so she’ll check his activity on her iPad to determine whether it’s a good time to call.
People making audio and video recordings must abide by state privacy laws, which typically require the consent of the person being recorded. It’s not as clear, however, if consent is needed to collect the activity data that sensors gather. That falls into a gray area of the law, similar to data collected through internet browsing.
Then there is the problem of how to pay for it all. Medicaid, the federal-state health program for low-income people, does cover some passive monitoring for home care, but it’s not clear how many states have opted to pay for such service.
Some seniors also lack access to robust internet broadband, putting much of the more sophisticated technology out of reach, noted Karen Lincoln, founder of Advocates for African American Elders at the University of Southern California.
The relief monitoring devices bring caregivers may be the most compelling reason for their use. Delaine Whitehead, who lives in Orange County, California, started taking medication for anxiety about a year after her husband, Walt, was diagnosed with Alzheimer’s.
Like Weathers-Jablonski, Whitehead sought technology to help, finding peace of mind in sensors installed on the toilets in her home.
Her husband often flushed too many times, causing the toilets to overflow. Before Whitehead installed the sensors in 2019, Walt had caused $8,000 worth of water damage in their bathroom. With the sensors, Whitehead received an alert on her phone when the water got too high.
“It did ease up a lot of my stress,” she said.
Sofie Kodner is a writer with the Investigative Reporting Program at the University of California-Berkeley Graduate School of Journalism. The IRP reported this story through a grant from The SCAN Foundation.