Technology for older adults and their care partners, typically marketed for safety and security, has been evolving for years, and now includes everything from location trackers to companion robots.

But often left out of decisions about how and why to use that technology are the older adults themselves, says , associate professor of social work at the 天美影视传媒. Berridge studies issues facing older adults, in particular technology that can support care or a person鈥檚 ability to live independently. She recently published two articles related to older adults and : In articles for the and , Berridge explores older adults鈥� opinions of companion robots, finding that such devices may not provide the blanket comfort or utility that creators presume 鈥� and that older adults have an interest in data protections.

鈥淥lder adults have been learning about, adapting and integrating technology solutions into their lives for longer than anyone,鈥� said Berridge. 鈥淥lder adults鈥� feelings about technologies on offer to them for care and living at home, and their creative use, resistance and other interactions with these technologies should be taken seriously. So much research, time and money has been focused on pushing acceptance of technologies that could be better spent by older adults over direction, purpose and design.鈥�

Berridge spoke with UW News about the importance of involving older adults in the design and use of technology.

听

What do you think is important for people outside the field to understand?

CB: One of the themes in my research is that older adults are rarely empowered to refuse or negotiate how technology is used in their care. That doesn鈥檛 prevent many from and negotiating nevertheless 鈥� older adults are not passive users 鈥� but that this kind of engagement is often discouraged in design and implementation. My research on long-term care in peoples鈥� homes and in residential facilities has found that people are not meaningfully engaged in decisions about how and what data should be collected about them. There鈥檚 a misperception that most don鈥檛 want to be involved or consulted. Older adults are often configured as passive data points.

This matters because embedded in these technologies are certain values (e.g., that safety justifies invasion of privacy) or limitations on the older adult (i.e., they can鈥檛 deviate from routine, like younger adults can, without triggering an intervention). With the algorithmic management of care, the person being targeted by technology may not share the priorities embedded in the devices themselves. When the technology practice enables older adults to be controlled, rather than enabling them to have control, this intensifies unbalanced power dynamics in care. It can mean restrictions or exercise of control over their lives. There鈥檚 a lot of at play in how technologies used in care are developed, hyped and implemented. And ableism, particularly when it comes to .

听

People might assume that surveillance technology is a means of protection. Can you talk about the positive and negative aspects of this kind of technology?

CB: Different people are going to weigh the range of implications differently 鈥� in a single day I have talked with a person who likened her daughter using sensors to track her routines to the Gestapo, and another person without a support network who 鈥渨ish[ed] someone cared enough about me to watch me on camera!鈥�

听As many 鈥� including faculty at the UW 鈥� have , power is implicated in all the decisions (what data is collected, what鈥檚 excluded, how categories are determined, what behavior is allowed or prohibited 鈥� the very definition of the problem the technology is targeting). We have been in a wakeup call moment, as COVID further exposed the dramatic racial disparities in health among older people and the lack of access to home care. Where鈥檚 the meaningful policy action? Where鈥檚 the influx of resources needed to combat social exclusion and racial inequities in health and long-term care access? What we see are efforts to give lonely older adults AI companionship, deploy digital contact tracing in nursing homes, and employ AI to manage people more efficiently. Whose problem is that addressing? What are the opportunity costs of pursuing sideshow solutions that don鈥檛 touch the underlying problems?

听

You note in a recent study that some state aging agencies are distributing companion robots to assist with loneliness. Are they a solution?

CB: Prompted by the pandemic, a lot of states have passed out furry pet-like or speaking robots with the goal of mitigating loneliness.

Together with researchers at Oregon Health & Science University, I surveyed more than 800 people, half of whom were over age 64, about whether they thought an artificial companion robot 鈥� one that can 鈥渢alk and listen,鈥� so not like Paro or other plush non-talking robots 鈥� would help them feel less lonely, if they were. Only 3% replied 鈥渄efinitely yes.鈥� A quarter answered 鈥渄efinitely no鈥� and a significantly greater percentage answered 鈥減robably no鈥� than 鈥減robably yes.鈥� We also asked about comfort with small companion robots and different types of data use on the horizon.

This comment we heard in the study echoed a common sentiment among participants. A participant told us: 鈥淥ne of the problems I see with how we care for the elderly is the lack of contact with others. I am afraid that these measures would lead to less and less human contact for these folks. It might become easier and cheaper for the care system to use these measures and for our elderly to become more and more isolated.鈥� Others acknowledged positive potential uses of AI-enabled robots to assist with physical tasks 鈥� capacity that is limited at the moment 鈥� and drew a line at social interaction.

But the most-raised issue was invasion of privacy, and perception that artificial companion robot-based data collection is excessive monitoring. Many participants also raised concerns about data security, third party use, or exploitation of data. For example, a participant explained that an AI companion or device could be especially helpful in alerting emergency personnel, but they were concerned about how data from such a device would be stored and used by third-party companies. Clearly, older adults would benefit from new regulation of AI, though their interests haven鈥檛 been represented very well so far in those discussions.

How might older adults be more included in designing technologies?

CB: Last spring, I had the pleasure of working with design students from the UW School of Art + Art History + Design with my colleague, , associate professor of interaction design at the UW. Her Interface Design 2 students designed fun and creative IoT (Internet of Things) system prototypes, many of which were better targeted to the breadth of desires and needs of older adults than what the current 鈥淎geTech鈥� space is producing. Dr. Desjardins had students each interview older people and then as a class share back and collectively identify themes 鈥� before conceiving of their products. And unlike many marketed devices, students provided their imagined users with transparent information about data flows.

You鈥檝e developed a prototype web app, Let鈥檚 Talk Tech, that would help older adults with dementia and their caregivers make joint decisions about technology. What are you finding from that approach?

CB: This is the first-of-its-kind tool to help families meaningfully engage people living with dementia in decisions about technology use. I worked with the UW (CIRG) to develop Let鈥檚 Talk Tech as a web app and with doctoral student Natalie Turner to pilot the app with volunteers from the UW Alzheimer鈥檚 Disease Research Center.

Families or others supporting people living with dementia don鈥檛 have those conversations about what the person would or would not want used with them, for understandable reasons. So the families need help, because they鈥檙e left to navigate a complex technological landscape without a map. Having an informed conversation with the person living with mild-stage Alzheimer鈥檚 disease about their hopes and concerns and feelings about various technologies and other support options gave our pilot study participants a significantly better feeling of . They told us it provided the structure and direction for hard conversations that may not have otherwise happened. Many reported that it was not an easy conversation, but all noted that any discomfort was worth what was gained.

For more information, contact Berridge at clarawb@uw.edu.

Older adults throughout Washington are increasingly isolated during the COVID-19 pandemic, challenged by the even greater reliance on technology and often neglecting chronic health conditions, according to new research from the 天美影视传媒.

And though senior-services agencies are adapting and innovating to meet the needs, researchers say a lack of consistent funding, coupled with the general uncertainty of the pandemic, could destabilize the care system for the state鈥檚 older adults.

鈥淭he web of services in the aging network is so critical and during the pandemic a lot of nonprofits are struggling. But the people they serve are at particular risk, because we already had a growing crisis of isolation among older adults,鈥� said , assistant professor of social work at the UW and the study鈥檚 lead author.

The , funded by a UW Population Health Initiative grant, is the result of interviews with leaders of nearly four dozen organizations around the state during July and August 鈥� just as COVID-19 cases spiked, many lockdown restrictions remained in place, and the social and physical effects of the first few months of quarantines became apparent.

According to the Centers for Disease Control and Prevention, eight in 10 deaths from COVID-19 occur in people ages 65 and older. Berridge and her team, all UW faculty and doctoral students who study aging from health and policy-related fields, wanted to examine how Washington鈥檚 older adults were faring through the lens of the agencies that serve them, so as to inform future policy and budget decisions around social services.

Washington is home to an estimated 1.7 million people over age 60, and a variety of public and private entities that serve them, from regional Area Agencies on Aging to smaller community-level organizations and senior centers that offer meals, case management and social activities. UW researchers sought a geographically and demographically diverse sampling of organizations in order to get a broad scope of the needs and how they鈥檙e being addressed.

Among the findings:

• The COVID-19 pandemic has increased social isolation among older adults, primarily due to their higher susceptibility to the disease and the restrictions that encourage them to stay put, with few, if any visitors.
• Not going out also may mean not going to the doctor, affecting physical health. Agency representatives report new or worsening health conditions among older adults.
• Many communities 鈥� low-income older adults; Black, Indigenous and people of color; those with limited English proficiency; and those experiencing homelessness 鈥� are at risk of being overlooked and underserved.
• With so many of life鈥檚 routines moved online during the pandemic 鈥� including medical appointments 鈥� the 鈥渄igital divide,鈥� or lack of Internet access or devices such as phones and laptops, has widened among older adults. And many may not have the resources, or ability or interest to learn, especially among those with dementia or sensory loss.

鈥淭he digital divide has always been there. It just matters so much more now, because everything depends on being online,鈥� Berridge said.

The agencies, in turn, are struggling mainly due to higher costs, falling revenues and an uncertain future. Not every service can be seamlessly transitioned to remote operations; several organizations reported laying off staff, while the volunteer corps has shrunk due to quarantine restrictions and infection risks. Many organizations realized they needed to acquire more resources quickly, whether additional PPE for employees or refrigerators to store meals for delivery. Agencies and their clients in rural areas have been particularly vulnerable to resource shortages and technology gaps.

At the same time, the nature and purpose of these organizations 鈥� knowing and serving their clients 鈥� has been their greatest strength, Berridge said. The sudden shift to remote operations propelled many agencies to collaborate with local businesses or other organizations and come up with creative ways to try to meet the need. Popular innovations included meal delivery in partnership with restaurants and with transit agencies and offering activities such as games and mindfulness exercises over Zoom, Berridge said.

Telemedicine appointments, for example, are helpful to reach isolated seniors but are limited in the scope of conditions that can be managed.

“Telemedicine is a great option for some, but there are certain conditions that cannot be evaluated adequately over a video visit,” said study co-author , an assistant professor of neurology in the UW School of Medicine.

But sustaining such innovations indefinitely, while meeting the health needs of the growing population of older adults, will require budgetary and policy commitments to the state鈥檚 aging network, Berridge said. With technology alone, communities need expanded WiFi access and distribution of devices and the means to instruct older adults in how to use laptops, tablets, phones and apps.

By 2030, in a majority of Washington counties. And while the state is recognized as a leader in elder care, inconsistent funding and the potential impact on health could jeopardize its aging social and health care services sectors鈥� ability to meet the growing need.

鈥淔unding stability is huge. Many of these organizations operate on a shoestring,鈥� Berridge said. 鈥淗aving the funds, knowing they鈥檙e going to be secure, would allow them to maintain their services and to act in more permanent, innovative ways.鈥�

Other co-authors of the study were of the Department of Health Services, of the School of Social Work, and and of the Evans School of Public Policy and Governance.

For more information, contact Berridge at clarawb@uw.edu.

For many people who care for aging parents, one solution is a safe, responsible nursing home.

But an increasingly common means of ensuring that safety 鈥� security cameras installed by relatives 鈥� may do more harm than good, says , an assistant professor of social work at the 天美影视传媒.

With reports of crimes against nursing home residents gaining media attention around the country, it鈥檚 understandable that families would want to protect their loved one and attempt to establish accountability for care, Berridge said. But in articles published late last winter in and , Berridge outlines the list of legal and moral issues that surveillance raises.

鈥淭he use of cameras in resident rooms is so common that some states have passed laws to help families and facilities navigate the legal issues. But it鈥檚 not just a gray zone for law. Lots of ethical issues are at play, and it raises the question of privacy鈥檚 role in our lives.鈥�

At least are believed to have been the victim of some form of elder abuse, whether physical, sexual or psychological, or in the form of financial mismanagement or a deprivation of resources such as food or medication. (Cases are believed to be underreported, making the 10 percent figure a low estimate.) While most abuse is , the high-profile nature of crimes against nursing home residents by facility staff can alarm anyone whose loved one is in residential care. This is especially true for families of people with forms of dementia, because those residents are less likely to be able to accurately report abuse.

So far, seven states, including Washington, have passed laws allowing placement of surveillance cameras in the rooms of nursing home residents. In the Elder Law Journal article, Berridge and her co-authors analyze each state鈥檚 law and conclude that for each law, privacy concerns remain.

For the study published in AJOB Empirical Bioethics, Berridge distributed an online survey through the Center for Gerontology and Healthcare Research at Brown University to nursing homes and assisted living facilities. More than 270 facilities from 39 states responded to the anonymous survey, which included specific and open-ended questions about policies and use of surveillance cameras. Of the caregiving facilities that responded, some 11% had initiated use of cameras on their premises.

In this survey, the majority of respondents cited privacy and dignity of residents as key disadvantages to cameras.

By their very nature, surveillance cameras record all of the activity in a room, including personal moments such as hygiene or dressing. From a crime-prevention perspective, those are times when a resident is most vulnerable, but from a privacy perspective, the resident may not want such footage to be recorded, let alone viewed.

Tied to questions about privacy is the issue of consent, Berridge said 鈥� not only whether the resident has the capacity to consent to being monitored, but also, in the case of two-person rooms, whether the roommate can consent.

鈥淢ost nursing home residents have a roommate. Protecting their privacy when a camera is in the room would be very difficult in practice, especially if the camera picks up audio,鈥� Berridge said. 鈥淲e found that the real-life constraints on opportunities to selectively move or cover a camera in a given situation are not acknowledged in the state laws. These are chronically understaffed settings.鈥�

A less-cited 鈥� and often overlooked 鈥� issue, Berridge added, is the legal responsibility the camera owner has for the security of the feed. Installing a camera without establishing a secure portal can expose the resident (and a roommate) to hackers.

Respondents to the survey pointed to potential advantages of cameras, as well, particularly as deterrents to abuse, and to use by the facilities themselves to inform about individual residents鈥� needs and as resources to help staff improve.

Ultimately, Berridge and her co-authors say that while cameras may offer families some comfort, they aren鈥檛 the answer to preventing abuse, or a proxy for accountability. Rather, the focus should be on reform and increased funding for the long-term care system so that nursing homes and assisted living facilities are sufficiently staffed, with employees paid a living wage. Berridge points to a 鈥渃ulture change鈥� movement in long-term care that aims to deinstitutionalize nursing homes and make them more home-like. This movement involves practices to improve care quality, enhance person-centeredness, and empower staff. In Washington, lawmakers this year passed the Long-Term Care Trust Act, which establishes a publicly funded source of long-term care insurance. The measure, which awaits Gov. Jay Inslee鈥檚 signature, may help people pay for in-home services as an alternative to nursing home care.

Berridge recently received a four-year, nearly $500,000 grant from the National Institute on Aging to develop a self-administered tool to help people with Alzheimer鈥檚 disease and other forms of dementia and their families understand and make decisions about the use of a range of technologies that remotely monitor people in their homes for their safety, including webcams. Unlike cameras in nursing home rooms that are aimed at potential abusers, technologies addressed in this study are used to monitor older adults鈥� activities and behaviors. It鈥檚 easy, Berridge explained, for adult children to overlook, or even dismiss, the concerns of a parent when it comes to issues of monitoring care, and the parent鈥檚 right to privacy and sense of freedom.

鈥淭his tool will be the first of its kind to support families to navigate the complex technology landscape and听guide them in balancing their听perceived need for ongoing surveillance and the听older adult鈥檚 dignity and wishes,鈥� Berridge said.

The Elder Law Journal article was funded by the Borchard Foundation Center on Law and Aging. Berridge conducted the survey while a postdoctoral fellow at Brown University through a National Research Service Award from the Agency for Health Research and Quality.

Co-authors on the camera study were of the University of California, Berkeley and of Cornell University; Levy also led the Elder Law Journal article, along with of Cornell.

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For more information, contact Berridge at clarawb@uw.edu.