More Families Are Using Nanny Cams to Watch Elderly Loved Ones, Raising Ethical Questions
After Jackie Costanzo's mother broke her right hip in a fall, she needed more hands-on care in her assisted-living apartment near Sacramento, California. A social worker from her health plan suggested installing a video camera to help ensure those services were provided.
Without the camera, Costanzo wouldn't have a way to confirm that caregivers had followed through with serving meals, changing clothes, and fulfilling other care needs.
When Costanzo placed the device in May 2018, she informed the administrator and staff, and at first, there were no objections. The facility posted a sign on the apartment's front door, alerting anyone who entered of recording in progress.
But this past spring, a new management company came across the sign and threatened to issue a 30-day eviction notice to her 93-year-old mother, Louise Munch, who has dementia, for violating a policy that prohibits cameras in residents' rooms. With encouragement from California Advocates for Nursing Home Reform, Costanzo researched the state's regulations but couldn't find anything to support or deny camera use. She refused to remove the recording device and prevailed.
"In essence, my mom was 'grandfathered in' because she moved in under a management company that did not specify that residents could not have cameras," says Costanzo, 73, a retired elementary schoolteacher who lives a three-hour drive away, in Silicon Valley, and visits one day every two weeks. Without the camera, Costanzo, who is her mother's only surviving child, wouldn't have a way to confirm that caregivers had followed through with serving meals, changing clothes, and fulfilling other care needs.
As technological innovations enable next of kin to remain apprised of the elderly's daily care in long-term care facilities, surveillance cameras bring legal and privacy issues to the forefront of a complex ethical debate. Families place them overtly or covertly—disguised in a makeshift clock radio, for instance—when they suspect or fear abuse or neglect, so they can maintain a watchful eye, perhaps deterring egregious behavior. But the cameras also capture intimate caregiving tasks, such as bathing and toileting, as well as dressing and undressing, which may undermine the dignity of residents.
So far, laws or guidelines in eight states—Illinois, Maryland, New Mexico, Oklahoma, Texas, Utah, Virginia, and Washington—have granted families the rights to install cameras in a resident's room. In addition, about 15 other states have proposed legislation. Some states, such as Pennsylvania, have put forth regulatory compliance guidance, according to a column published in the July/August 2018 issue of Annals of Long-Term Care.
The increasing prevalence of this legislation has placed it on the radar of long-term care providers. It also suggests a trend to clarify responsible camera use in monitoring services while respecting privacy, says Victor Lane Rose, the column's editor and director of aging services at ECRI Institute, a health care nonprofit near Philadelphia, Pennsylvania.
In most cases, a resident's family installs a camera or instigates a request in hopes of sparing their loved one from the harms of abuse, says James Wright, a family physician who serves as the ethics committee's vice chair of the Society for Post-Acute and Long-Term Care Medicine in Columbia, Maryland. A camera also allows the family to check in on the resident from afar and remain on alert for a potential fall or agitated state, he says.
"It's rare that a facility will have 24-hour presence in a patient's room. You won't have a nurse in there all the time," says Wright, who is also medical director of two long-term care centers and one assisted-living facility around Richmond, Virginia. Particularly "with dementia, the family often wonders" if their loved one is safe.
While offering families peace of mind, he notes that video cameras can also help exonerate caregivers accused of abuse or theft. Hearing aids, which typically cost between $2,000 and $3,000 each, often go missing. By reviewing a video together, families and administrators may find clues to a device's disappearance. Conversely, Wright empathizes with the main counterargument against camera use, which is the belief that "invasion of privacy is also invasion of human dignity."
In respecting modesty, ethical questions abound over whether a camera should be turned off when a patient is in the midst of receiving personal care, such as dressing and undressing or using bedpans. Other ethical issues revolve around who may access the recordings, says Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care in Washington, D.C.
Video cameras, she contends, are only one tool in shielding residents from abuse. They are "not substitutes for personal involvement," she says. "People need to be very vigilant visiting their family members, and facilities have a responsibility to ensure that residents are free of abuse."
Lack of accountability perpetuates abuse in long-term care settings and stems in large part from systemic underfunding.
Educating employees in abuse prevention becomes paramount, and families should ask about staff training before placing their loved one in a long-term care facility, Smetanka says. Prior to installing a camera, she recommends consulting an attorney who is familiar with this issue.
But thoughts of a camera often don't occur to families until an adverse event affects their loved one, says Toby Edelman, a senior policy attorney at the Center for Medicare Advocacy, a nonprofit organization with headquarters in Washington, D.C., and Connecticut.
"These cameras can show exactly what's going on," she explains, noting that prosecutors have used the recordings in litigation. "When residents have injuries of unknown origin" and they can't verbalize what happened to them, "the cameras may document that yes, the resident was actually hit by somebody."
With a resident's safety and security being "the most important consideration," the American Health Care Association in Washington, D.C., which represents long-term and post-acute care providers, supports allowing states, clinicians, and patients to decide about camera use on a local level, says David Gifford, senior vice president of quality and regulatory affairs and chief medical officer.
"We've seen some success with tools such as permissive legislation, where residents and their loved ones have the ability to determine whether a camera is right for them while working with the center openly and ensuring the confidentiality of other residents," says Gifford, who practiced as a geriatrician. "It is important to note, however, that surveillance cameras are still only one element of the quality matrix. We can never hope to truly improve quality care by catching bad actors after the fact."
Lack of accountability perpetuates abuse in long-term care settings and stems in large part from systemic underfunding. Low wages and morale are tied to high turnover, and cameras don't address this overarching problem, says Clara Berridge, an assistant professor of social work at the University of Washington in Seattle, who has co-authored articles on surveillance devices in elder care.
Employees often don't perceive a nursing assistant position as a long-term career trajectory and may not feel vested in the workplace. Training in the recognition and reporting of abuse becomes ineffective when workers quit shortly thereafter. Many must juggle multiple jobs to make ends meet. Staffing shortages are endemic, leading to inadequate oversight of residents and voicing of abuse complaints, she says.
In Berridge's assessment, cameras may do more harm than good. Respondents to a survey she conducted of nursing homes and assisted-living facilities in the United States found that recording devices tend to fuel workers' anxiety amid a culture that further demoralizes and dehumanizes the care they provide.
Consent becomes particularly thorny in shared rooms, which are more common than not in nursing homes. States that permit in-room cameras mandate that roommates or their legal representative be made aware. Even if the camera is directed away from their bed, it will still capture conversations as well as movements that enter its scope. "Surveillance isn't the best way to protect adults in need of support," Berridge says. "Public investment in quality care is."
"The camera is invaluable. But there's no law that says you can have it automatically, so that's wrong."
In the one-bedroom assisted-living apartment where Costanzo's mother lives alone, consent from another resident wasn't needed. Without a roommate, the camera is much less intrusive, although Costanzo wishes she had put one in the living room, not just the bedroom, for more security.
Her safety concerns escalated when she read about a Texas serial killer who smothered victims after gaining access to senior care facilities by "masquerading as a maintenance man." She points to such horrifying incidents, although exceedingly rare, as further justification for permitting cameras to help guard the vulnerable against abuse in long-term care settings. And she hopes to advocate for an applicable law in California.
"The camera is invaluable," says Costanzo, who pays for monthly Wi-Fi service so she can see and interact with her mother, who turns 94 in October, any time of day or night. "But there's no law that says you can have it automatically, so that's wrong."
Gene Transfer Leads to Longer Life and Healthspan
The naked mole rat won’t win any beauty contests, but it could possibly win in the talent category. Its superpower: fighting the aging process to live several times longer than other animals its size, in a state of youthful vigor.
It’s believed that naked mole rats experience all the normal processes of wear and tear over their lifespan, but that they’re exceptionally good at repairing the damage from oxygen free radicals and the DNA errors that accumulate over time. Even though they possess genes that make them vulnerable to cancer, they rarely develop the disease, or any other age-related disease, for that matter. Naked mole rats are known to live for over 40 years without any signs of aging, whereas mice live on average about two years and are highly prone to cancer.
Now, these remarkable animals may be able to share their superpower with other species. In August, a study provided what may be the first proof-of-principle that genetic material transferred from one species can increase both longevity and healthspan in a recipient animal.
There are several theories to explain the naked mole rat’s longevity, but the one explored in the study, published in Nature, is based on the abundance of large-molecule high-molecular mass hyaluronic acid (HMM-HA).
A small molecule version of hyaluronic acid is commonly added to skin moisturizers and cosmetics that are marketed as ways to keep skin youthful, but this version, just applied to the skin, won’t have a dramatic anti-aging effect. The naked mole rat has an abundance of the much-larger molecule, HMM-HA, in the chemical-rich solution between cells throughout its body. But does the HMM-HA actually govern the extraordinary longevity and healthspan of the naked mole rat?
To answer this question, Dr. Vera Gorbunova, a professor of biology and oncology at the University of Rochester, and her team created a mouse model containing the naked mole rat gene hyaluronic acid synthase 2, or nmrHas2. It turned out that the mice receiving this gene during their early developmental stage also expressed HMM-HA.
The researchers found that the effects of the HMM-HA molecule in the mice were marked and diverse, exceeding the expectations of the study’s co-authors. High-molecular mass hyaluronic acid was more abundant in kidneys, muscles and other organs of the Has2 mice compared to control mice.
In addition, the altered mice had a much lower incidence of cancer. Seventy percent of the control mice eventually developed cancer, compared to only 57 percent of the altered mice, even after several techniques were used to induce the disease. The biggest difference occurred in the oldest mice, where the cancer incidence for the Has2 mice and the controls was 47 percent and 83 percent, respectively.
With regard to longevity, Has2 males increased their lifespan by more than 16 percent and the females added 9 percent. “Somehow the effect is much more pronounced in male mice, and we don’t have a perfect answer as to why,” says Dr. Gorbunova. Another improvement was in the healthspan of the altered mice: the number of years they spent in a state of relative youth. There’s a frailty index for mice, which includes body weight, mobility, grip strength, vision and hearing, in addition to overall conditions such as the health of the coat and body temperature. The Has2 mice scored lower in frailty than the controls by all measures. They also performed better in tests of locomotion and coordination, and in bone density.
Gorbunova’s results show that a gene artificially transferred from one species can have a beneficial effect on another species for longevity, something that had never been demonstrated before. This finding is “quite spectacular,” said Steven Austad, a biologist at the University of Alabama at Birmingham, who was not involved in the study.
Just as in lifespan, the effects in various organs and systems varied between the sexes, a common occurrence in longevity research, according to Austad, who authored the book Methuselah’s Zoo and specializes in the biological differences between species. “We have ten drugs that we can give to mice to make them live longer,” he says, “and all of them work better in one sex than in the other.” This suggests that more attention needs to be paid to the different effects of anti-aging strategies between the sexes, as well as gender differences in healthspan.
According to the study authors, the HMM-HA molecule delivered these benefits by reducing inflammation and senescence (cell dysfunction and death). The molecule also caused a variety of other benefits, including an upregulation of genes involved in the function of mitochondria, the powerhouses of the cells. These mechanisms are implicated in the aging process, and in human disease. In humans, virtually all noncommunicable diseases entail an acceleration of the aging process.
So, would the gene that creates HMM-HA have similar benefits for longevity in humans? “We think about these questions a lot,” Gorbunova says. “It’s been done by injections in certain patients, but it has a local effect in the treatment of organs affected by disease,” which could offer some benefits, she added.
“Mice are very short-lived and cancer-prone, and the effects are small,” says Steven Austad, a biologist at the University of Alabama at Birmingham. “But they did live longer and stay healthy longer, which is remarkable.”
As for a gene therapy to introduce the nmrHas2 gene into humans to obtain a global result, she’s skeptical because of the complexity involved. Gorbunova notes that there are potential dangers in introducing an animal gene into humans, such as immune responses or allergic reactions.
Austad is equally cautious about a gene therapy. “What this study says is that you can take something a species does well and transfer at least some of that into a new species. It opens up the way, but you may need to transfer six or eight or ten genes into a human” to get the large effect desired. Humans are much more complex and contain many more genes than mice, and all systems in a biological organism are intricately connected. One naked mole rat gene may not make a big difference when it interacts with human genes, metabolism and physiology.
Still, Austad thinks the possibilities are tantalizing. “Mice are very short-lived and cancer-prone, and the effects are small,” he says. “But they did live longer and stay healthy longer, which is remarkable.”
As for further research, says Austad, “The first place to look is the skin” to see if the nmrHas2 gene and the HMM-HA it produces can reduce the chance of cancer. Austad added that it would be straightforward to use the gene to try to prevent cancer in skin cells in a dish to see if it prevents cancer. It would not be hard to do. “We don’t know of any downsides to hyaluronic acid in skin, because it’s already used in skin products, and you could look at this fairly quickly.”
“Aging mechanisms evolved over a long time,” says Gorbunova, “so in aging there are multiple mechanisms working together that affect each other.” All of these processes could play a part and almost certainly differ from one species to the next.
“HMM-HA molecules are large, but we’re now looking for a small-molecule drug that would slow it’s breakdown,” she says. “And we’re looking for inhibitors, now being tested in mice, that would hinder the breakdown of hyaluronic acid.” Gorbunova has found a natural, plant-based product that acts as an inhibitor and could potentially be taken as a supplement. Ultimately, though, she thinks that drug development will be the safest and most effective approach to delivering HMM-HA for anti-aging.
In recent years, researchers of Alzheimer’s have made progress in figuring out the complex factors that lead to the disease. Yet, the root cause, or causes, of Alzheimer’s are still pretty much a mystery.
In fact, many people get Alzheimer’s even though they lack the gene variant we know can play a role in the disease. This is a critical knowledge gap for research to address because the vast majority of Alzheimer’s patients don’t have this variant.
A new study provides key insights into what’s causing the disease. The research, published in Nature Communications, points to a breakdown over time in the brain’s system for clearing waste, an issue that seems to happen in some people as they get older.
Michael Glickman, a biologist at Technion – Israel Institute of Technology, helped lead this research. I asked him to tell me about his approach to studying how this breakdown occurs in the brain, and how he tested a treatment that has potential to fix the problem at its earliest stages.
Dr. Michael Glickman is internationally renowned for his research on the ubiquitin-proteasome system (UPS), the brain's system for clearing the waste that is involved in diseases such as Huntington's, Alzheimer's, and Parkinson's. He is the head of the Lab for Protein Characterization in the Faculty of Biology at the Technion – Israel Institute of Technology. In the lab, Michael and his team focus on protein recycling and the ubiquitin-proteasome system, which protects against serious diseases like Alzheimer’s, Parkinson’s, cystic fibrosis, and diabetes. After earning his PhD at the University of California at Berkeley in 1994, Michael joined the Technion as a Senior Lecturer in 1998 and has served as a full professor since 2009.
Dr. Michael Glickman