Steve Kasch’s mom, Julia, was always worried about losing her keys. “She wasn’t even driving, but she was checking her purse every ten minutes,” he says.
Kasch told me that his mom was fairly independent, but over the past few years, her memory started to go. She would forget if she ate a meal or, more troubling, forget if she took medication. “She might think she took her pill, and not take it for three days,” he says. “Or she might take six in one day.”
In December, Kasch and his wife realized she couldn’t keep living on her own, and they started shopping around for an assisted living facility. The Legacy at Town Square in Amarillo, Texas, stood out. It gave each resident a location-monitoring, emergency button-equipped wristband — which also swiped them into their rooms. “Now, there’s no keys,” Kasch says.
Just after she moved in, the COVID-19 pandemic shut down access to senior care facilities, many of which have been flattened by the virus. The wristbands, already a draw for family members like Kasch, became even more of a selling point. They’re made by a company called CarePredict. CarePredict normally markets its devices to caregivers as tools that track changes in older adults’ behavior. They monitor things like activity level and walking patterns. But when the COVID-19 pandemic started devastating nursing homes, the team quickly spun up a new feature: automatic contact tracing.
Contact tracing helps control the spread of an infectious disease by tracking down anyone who has been in contact with a sick person and monitoring them to check if they caught the disease. Usually, it’s done manually by interviewing patients and asking them who they’d been in contact with. But facilities equipped with CarePredict already track peoples’ every move. The systems are packed with data on the interactions of anyone with a wristband.
“You could rewind and replay,” says Jerry Wilmink, the chief business officer at CarePredict.
For months, tech companies like Google and Apple and countries like Germany and the United Kingdom have tried to use high-tech systems to automate the contact tracing process. They’re appealing, quick solutions, but they’ve been slow to get off the ground and are hobbled by concerns around efficacy, privacy, and adoption. While public health experts argue tech-driven contact tracing has a role in the fight against the coronavirus, there’s open debate over how and if that might happen.
Some senior living facilities in the United States, though, are already quietly using automated systems to guide contact tracing, facilitated by companies like CarePredict.
The privacy concerns that haunt broader tech-based contact tracing efforts are present in those environments, too, but they often aren’t considered. Because the tools are used for older adults, it’s assumed that the benefits are worth any trade-offs. Concerns around autonomy and choice aren’t given the same weight, says Clara Berridge, a professor at the University of Washington who studies health care technology in aging populations.
“Autonomy and privacy are super interlinked,” Berridge says. “And we tend to undervalue both of those things for older adults. Instead, safety is at the forefront.”
Wilmink showed me the CarePredict monitoring system in action. “I’m going to share my screen to show you,” he told me, before pulling up the dashboard for a Lifewell senior living community and sharing his screen. It showed the floorplans of the building, with blue and green dots clustered in the numbered rooms and open spaces. “This is real time. The blue dots are the residents, and the green dots are the staff,” Wilmink told me.
Next to the floorplans, a sidebar showed a list of every resident and staffer. For my sake, they replaced the names with strings of characters. $bsvobtbifcb was in room 315, a bedroom, and had a low battery. $nbsztusjdlmfs was in room 109, the kitchen. Live alerts continued to fill the screen. “You can see, for instance, this individual in their kitchen had pressed the button on their wearable, and this staff member has selected to address this particular alert,” Wilmink says.
Next, Wilmink clicks through to the contact tracing report feature. He selects resident $bmkvez from a drop-down menu. “I look at this particular resident here,” he says. “Say they test positive today.” He sets the calendar to cover from May 12th to May 19th. “Let’s go back a week.”
Immediately, a list pops up of around a dozen other residents and staffers. It lists their name and the length of time that their wearable location monitoring tag was nearby $bmkvez’s wearable location monitoring tag. It also notes the length of time they were in close proximity — five minutes, three hours — and the room where it happened.
If a resident or staff member actually tested positive for COVID-19 or started showing symptoms, the system can quickly generate a list of everyone else who may need to be tested or quarantined. Some Lifewell living facilities have already used the feature to track down the contacts of people who tested positive. Most of the time, the initial case has been of a staff member, Greg Zobel, chief operating officer at CarePredict, told me during the demonstration. The system can then help track every person a staff member interacted with.
The Legacy at Town Square, the Lifewell facility in Amarillo, Texas, doesn’t have any positive COVID-19 cases. But it has had people tested for the virus, and it used the contact tracing tool while they were waiting for the test results to come back. Joe Walter, the executive director of the facility, says it’s useful.
“We were super pumped when they came out with the contact tracing, because it’s just such a time saver,” Walter says. “It’s so much more thorough than me, and my management team, and whoever’s involved trying to remember, ok, where was I the last 14 days.”
Care facilities like the Legacy at Town Square then don’t have to rely on their elderly residents to retrace their steps. “Good luck having them remember,” Zobel says.
Other companies that make location tracking systems for senior living facilities, like the North Dakota-based ZulaFly, have similar features. ZulaFly’s systems can run location history reports on residents wearing tags, says managing partner Stephanie Andersen. Usually, it’s used to pass along information to family members about what their loved one did on a particular day. “Someone says, you know, my mom didn’t go to therapy or participate in activities,” Andersen says. “I can run a location history report and see how she spent her time.”
The same report can help with contact tracing. ZulaFly reached out to their customers (many of which are nursing homes) as COVID-19 case numbers started to climb in the US to remind them of the feature. “One replied and said they’d already been using it,” Andersen says. “It really does have everything they need to know the second someone tests positive.”
Health care company CenTrak has listed location history as one of the benefits of its location tracking systems for years, says Ari Naim, president and CEO. “But it was like, number 25, in terms of the list of benefits,” he says. “I have a feeling it’s going to go further up.”
Experts working in health services refer to older adults, who often have other chronic health conditions, as a “high-need, high-cost” group, Berridge says. “They’re set up in a way that calls for more data collection to protect them,” she says.
Arguments that call for using apps and digital systems to automate the contact tracing process lean on similar principles. A once-in-a-generation pandemic is a high-need event, during which public health is regularly weighted more heavily than personal privacy. If collecting personal information (like where someone has been and who they were with) can protect people, the risks seem more reasonable.
The contact tracing apps used for the general population aren’t fully analogous to the location monitoring systems used in nursing homes. They use Bluetooth, not real-time location services — so rather than follow where people go, the Bluetooth systems only track the other devices they were nearby. All of that information is (theoretically) unidentifiable. Users have to opt in, and the tech companies described the steps they took to make the data anonymous.
Nursing facility systems, on the other hand, are usually opt out, not opt in, Berridge says. They use real-time location tracking and tie that information to each person’s name.
It takes more and more detailed information on older adults living in nursing homes to get the benefits facilities are looking for. Knowing where residents are, at all times, helps staffers keep track of people with dementia. It helps them pinpoint someone’s location if they need help, and it can flag if an individual isn’t attending meals or activities, which could be a sign of a problem.
“It’s pretty darn useful if you’re in independent living, and you decide to go for a walk,” says Laurie Orlov, elder care advocate and founder of Aging in Place Technology Watch, which documents and analyzes trends in technology for older adults. A wearable that monitors location and can call for help is a valuable backup if someone slips or has health trouble. “If it’s night, and there’s ice, having a full detection capability that knows where you are is really useful,” she says.
The Missouri Slope long-term care facility started using the ZulaFly monitoring system in August 2018. It was a slow rollout, says LeAnn Hokanson, vice president of resident services. But it helps the facility keep track of people in the sprawling old building, which takes up multiple city blocks. “We wanted residents to be able to call for help more easily,” she says. “We tried to focus more on the positive aspects, and not as much on the tracking.”
CenTrak and CarePredict stress that the benefits of their systems make it worth the concessions to resident and staff privacy. Monitoring residents keeps them safer, and empowers the staff to provide personalized care, Wilmink says. The tools aren’t just tracking, Naim said, they have emergency call buttons as well. “It’s a very simple principle. That is, what is the value it provides, and what are you giving up,” he says.
Contact tracing apps created for the general population could add value as well: advocates say they could help flag interactions people don’t remember they had and take some of the burden off of the manual contact tracing workforce. Discussions of that value, though, have been secondary to conversations around privacy and consent. Apple and Google talked just as much, if not more, about privacy when they announced their Bluetooth-centered contact tracing tool.
The nursing home systems, which are more obtrusive, haven’t faced the same level of scrutiny. That’s not surprising to Berridge. When it comes to technology like this, she says, there isn’t as much consideration to how the older adults they’re attached to might feel about it.
Berridge contributed to a survey of subject-matter experts, which is under review prior to publication, that evaluated risks and benefits of technology used in dementia care. She says experts were concerned about the amount of data the devices collect, the security of that data, and how that data was used. They also noted that, if the data showed evidence of high-risk behavior from residents or staff, that information could theoretically lead to increased health insurance premiums.
It may be that the benefits are worth the intrusions, Orlov says. “I think with fall detection, and anything that can help when you’re alone, the benefits exceed the cost of the privacy — assuming that you’re with it enough to opt in.”
Careful consideration of that question, though, has been slow to enter conversations around technology and senior care, Berridge says. When privacy is discussed, it’s often framed as a way to encourage people to use the tech. “It’s around acceptance — how do we get people to agree to use this?” she says.
Steven Kasch says his mother was uncertain about the CarePredict system, at first. She was used to being independent and said she didn’t see the need for it. But her memory loss made it important, Kasch says. “We just kept reiterating that it’s a safeguard, and it’s there to help you,” he says. “She’s warming up to it.” There’s similar carpeting and decor all through the different hallways at Legacy at Town Square, so it’s easy to get lost. The bracelet, and it’s call button, are there as a backup if she gets turned around.
“We sold it to her as safety,” Kasch says. Julia Kasch declined to be interviewed for this story.
It’s not uncommon for there to be gaps between how adult children and caregivers think about monitoring technology, and how the seniors they care for think about it, Berridge says. For caregivers, safety is critical. But older adults care a lot more about their privacy than many people give them credit for.
Berridge asked a group of homebound seniors who received Meals on Wheels how they felt about monitoring technologies like location trackers and cameras. She spoke to their adult children, who served as caregivers, separately. The gaps were clear: the caregivers were more supportive of the technology than the homebound parents were. Many caregivers said that they didn’t feel that they needed to involve their parents in the decisions to use the technology. “They grossly underestimated their parents’ ability to comprehend the basic functions of the technology,” Berridge says.
In fact, the seniors did understand the technology and had strong feelings about it. They said they behaved differently when tracking systems were watching them: they avoided sleeping in a chair because it may trigger an alarm, or they rushed in the bathroom because they don’t want the system to raise a flag if they were taking too long.
It’s hard for caregivers to predict how they might feel if they were in the position their parents are in. Berridge does ask, though, if people think that they would be comfortable if there were trackers on them when they were in their 80s. “You tend to hear people say, ‘Oh no, not for me,’” she says. “It tends to be, no, I wouldn’t want that, or I realized that my mother would hate this, but I love having it for her.”
Monitoring systems are often sold as ways to help give older adults more freedom. They can go where they want, and if they run into trouble, someone can come and help them. But the power dynamics between seniors and their caregivers sometimes means that the technologies restrict, rather than enhance, freedoms. “You’re causing people to actually change their behavior, because it’s causing feelings of being controlled by the system,” Berridge says.
The power dynamics are amplified when monitoring systems are used for older adults with dementia or other cognitive impairments who often have caretakers making decisions for them. “We’re talking about others opting in on their behalf, and possibly without their permission,” Orlov, the elder care advocate, says. The oldest wearable tracking devices used to keep dementia patients from wandering off were based on lockdown technology invented for prisons, she says.
Even though the stated goal may be for safety, they have their roots in systems that were used on people who had no say in the matter — and should have extra scrutiny before they’re introduced. “You’re taking advantage of an individual who can’t give permission to your tracking and the way you’re going to track is something on their body,” Orlov says.
Emergencies, though, can push tricky ethical conversations to the side — and the COVID-19 pandemic has increased interest in this technology. The virus burned through senior care facilities around the country, and by one estimate in June, around 40 percent of the people who have died from the virus in the United States contracted it in a nursing home. For an added layer of protection for this and future disease outbreaks, many senior care facilities and nursing homes are newly interested in location tracking systems, the companies that make those products say.
CenTrak’s Naim says that they’ve seen an increase in orders for tracking tags since the start of the COVID-19 pandemic. CarePredict is also seeing a surge in interest focused on its location tracking capabilities, Zobel says. It wasn’t the company’s original focus, but now it’s the main draw. They could envision the system being used for other infectious disease outbreaks in senior living facilities: outbreaks of highly contagious norovirus, which causes vomiting and diarrhea, are common in senior living facilities and nursing homes, for example.
“This is us hoping a little bit, but we think that the way this is going, some version of this is going to be standard operating procedures for them — they’re going to need a way to control these contagious diseases,” Zobel says.
However, they probably won’t be available to everyone. Nursing homes and care facilities with more resources will be the ones that can use them. Most care facilities — like the one Berridge’s grandfather lived in, for example — hardly have internet access. “They’re on the wrong side of the digital divide. Certain nursing homes are going to have more access to that contact tracing, and the help that provides during a crisis,” she says.
It’s still not clear, though, how much they’d actually help. Like contact tracing apps, these location monitoring systems haven’t been used for infectious disease outbreaks before. Despite the marketing, Orlov isn’t sure how effective they’ll be. If nursing home residents in a place using the monitors are restricted to their rooms and not allowed to mingle, as many have been during the pandemic, there won’t be much from them to keep track of. “It could be a false promise of something useful,” she says. “It’s an opportunity for some companies to make a buck.”
Berridge worries that a rush to adopt these systems could distract from efforts to fill the gaps in infection control practices in nursing facilities. In March, staffers in around a third of facilities in the US weren’t able to demonstrate thorough handwashing, and a quarter weren’t using personal protective equipment (PPE) like masks properly. And that’s if they had access to equipment at all. Staffers in nursing homes are often low-paid and don’t have sick leave. “If we say, we think we have a solution to our contact tracing problem, yet we’re not providing PPE and we’re not adequately training staff and we’ve got major turnover issues, that’s a problem,” she says.
Even if wearables are more security theater than ways to prevent the spread of disease, they’re still appealing to nursing home management groups worried about the fallout from devastating COVID-19 outbreaks. Vendors can market to companies concerned that they’ll be sued for failing to protect residents, Orlov says. “They’re going to have to convince people to come there in the future.”
If Zobel’s prediction that these systems will become standard is correct, integration of location monitoring for older adults won’t be temporary. In the context of a crisis, scaling up some of these systems may make sense, Berridge says. “The extent to which this would continue beyond the crisis — and it probably would continue beyond this crisis — I think that’s a concern.” Meanwhile, Apple and Google, plan to disable their Bluetooth contact tracing system after the COVID-19 pandemic fades.
There are benefits and drawbacks to any new technology, and ideally, people affected by that technology can decide how much privacy they’re willing to give up for a potential benefit. Each time a new contact tracing app launches, the questions resurface: Is it actually worth it? How much will it help? How invasive does it seem? Then, they get to make a choice. “For the general public, it’s already hard,” Orlov says.
For older adults, it’s even harder. They might ask different questions about location monitoring than the general public, and they might balance out safety and privacy differently than other demographics. But they don’t tend to have the same opportunity to make a choice based on their values. The elderly tend to be a disempowered group, and their caregivers end up being the ones empowered to make decisions.
If and as location monitoring systems from older adults become more common, people involved in their adoption should have similar conversations around privacy and autonomy that swirled around contact tracing apps. Using them ethically is possible, and they could help keep people safe. But they can’t be introduced without real consideration of older adults’ autonomy.
“It’s not just privacy,” Berridge says. “It’s privacy paired with issues of power and control.”