Courtesy Mary Daniel
En español | When the Minnesota Department of Health announced last month that nursing homes and assisted living facilities in the state could allow some family caregivers to resume regularly visiting loved ones, Kathy Merkel broke down: “I heard the press conference, I got up, I cried."
Two weeks later, Merkel entered her mother's northern Minnesota nursing home for the first time in more than four months. She and her brother now come daily, making sure June Merkel, who is 86 and has moderate dementia, eats her meals, gets her hair done and is soothed when she gets anxious and cranky around sundown, as they had done for years before COVID-19 hit.
"It's a lot of comfort care. She needed us,” Kathy Merkel says. “We're beyond grateful.”
Minnesota is one of a handful of states that have written “essential caregiver” policies into their strategies for resuming nursing home visits after a months-long ban on most visitors because of the pandemic.
In those states, long-term care facilities have discretion to allow regular access to visitors like Merkel, whom they deem critical to a resident's daily care and emotional well-being. These visits are different than most nursing home visits happening these days, which are closely monitored, strictly time-limited and happen in designated common areas, often outdoors, with protocols for masking, distancing, hygiene and health screening.
Courtesy Kathy Merkel
As pandemic lockdowns at many facilities stretch into their sixth month, the concept of expanded visits for essential caregivers is drawing support from advocates for nursing home residents and from many caregivers — and gaining traction among policy makers.
Last week, New Jersey and South Dakota announced essential caregiver policies, joining Indiana and Minnesota, which launched their programs in June and July, respectively. Michigan's nursing home restrictions do not use the term "essential caregiver" but do allow visits that support residents' daily living activities.
The state programs vary in detail but share a goal of mitigating what Minnesota's plan calls “the unintended consequences of prolonged physical separation and isolation on a resident's overall health and well-being."
"There are some residents that are really experiencing severe distress and decline,” says Lori Smetanka, executive director of the National Consumer Voice for Long-Term Care, a nonprofit advocacy group. “We think that for those residents, there needs to be really targeted access."
The push on visitation comes as long-term care facilities continue to struggle with shortages of staff, testing and personal protective equipment (PPE), and as COVID-19 case counts remain high in much of the country. Long-term care facilities account for more than 67,000 COVID deaths in the U.S. — nearly 40 percent of the nation's death toll.
The American Health Care Association and National Center for Assisted Living (AHCA/NCAL), trade groups for long-term care providers, say federal data show that nursing home cases rose sharply in July after falling through most of June, with increases concentrated in the Sun Belt.
The federal Centers for Medicare & Medicaid Services (CMS), which works with states to regulate nursing homes, continues to recommend strict limits on visitation.
"We would love nothing more than to see residents and families together again,” says Katie Smith Sloan, president and CEO of LeadingAge, an association of nonprofit providers of long-term care and other aging services.
"But without a coordinated federal response to address PPE shortages and a federally funded national testing plan, nursing homes must proceed with caution, carefully consider all the tradeoffs with each visitation strategy, then choose among extremely difficult options."
'It's not a casual visit'
Essential caregivers are typically family members or friends who were a steady presence at a loved one's facility before the pandemic, providing companionship and help with daily activities such as eating, bathing and grooming, or who commit to fulfilling that role now.
"It's not a casual visit,” says Lindsey Krueger, health facilities section chief for the Minnesota Department of Health. “We're trying to keep the residents at the center of all of this and ensure that we are trying to meet their well-being through this unprecedented time of COVID."
These programs are distinct from guidelines for general visitation put in place by the 30-plus states and the District of Columbia that have begun reopening long-term care facilities for certain kinds of visits. Like other visitors, essential caregivers are required to wear masks, get screened for symptoms, and keep their distance from staff and other residents. But they are generally allowed to visit more often, for longer periods, and go to loved ones’ rooms. Their access is not necessarily subject to facilities’ being COVID-free for a set period, as are broader visitation rules.
Individual facilities have final say on whether to allow essential caregivers in for such visits, and on who qualifies as an essential caregiver. States that have adopted such policies recommend or require that residents be consulted on and agree to the choice, which Elaine Ryan, AARP's vice president of state advocacy and strategy integration, says is essential.
"While essential caregiver programs are a step forward,” she says, “we must insist that all residents are afforded the choice to designate the caregiver or caregivers they want to see, and each facility must design a plan to meet the individual needs of each resident."
In an email statement to AARP, AHCA/NCAL called essential caregiver programs an “encouraging” approach to alleviating isolation. “This is a complex issue and will require a multipronged approach to support residents and their families until we have an effective and widely available vaccine,” the association said.
States take notice
States with essential caregiver policies are still the exception, but health officials in Indiana and Minnesota say they've fielded inquiries from other states about their programs. A Pennsylvania state senator has pledged to introduce legislation on such visits, and the issue is on the table for a task force appointed by Florida Gov. Ron DeSantis to make recommendations on reopening long-term care facilities to visitors, according to Mary Daniel, a member of the panel.
Courtesy Mary Daniel
Daniel made national news in July after she got a part-time job washing dishes at a Jacksonville assisted living facility so she could see her husband, Steve, who has Alzheimer's and is in memory care. Two days a week, after finishing her day job as an advocate for patients in medical billing disputes, she goes to Steve's facility, does her kitchen shift, then spends the evening with him, as she did almost nightly before the pandemic.
She has also become a prominent activist for expanded visitation, leading a Facebook group called Caregivers for Compromise that initially focused on Florida but now has more than 8,600 members in all 50 states and has made wider adoption of essential caregiver programs a priority.
"We believe this is a safe, very well-planned, thought-out” option, Daniel says. “We understand the dangers involved. But we also understand that staff members are going in there every day, and we believe that we can do what they are doing, under controlled measures — scheduled visits for limited periods of time, only essential caregivers, those who were proven to be essential before. And we believe that's a safe way for us to get started.”
When the pandemic struck, “there was an argument to take the one-sided approach of no visitors, shutdown, lockdown,” says Jason Karlawish, a geriatrician and professor at the University of Pennsylvania Perelman School of Medicine. “We've learned a lot about infectivity, the role of PPE and approaches to transmission. We have to incorporate those learnings into the ways we care for persons living in long-term care facilities."
An ‘isolation pandemic'
Indiana was the first state to authorize what it calls “essential family caregiver” visits, in June. Designated caregivers can visit daily for up to two hours on a prearranged schedule. They must follow many of the same safety protocols as employees, including getting tested regularly for COVID-19. (Minnesota, New Jersey and South Dakota do not mandate that essential caregivers be tested but do not preclude facilities from requiring such testing.)
Two months into the program, about 10 percent of the 78 Indiana nursing homes operated by American Senior Communities (ASC), the state's largest senior-living provider, have at least one essential caregiver coming in regularly.
These caregivers are required to go straight from check-in to their loved one's room. If there's a roommate, the facility will ensure the space is arranged to maintain distancing or move the person with the caregiver to a private room, says Janean Kinzie, ASC's director of social wellness and enrichment. Caregivers’ movement within the facility is tightly restricted, and they're expected to be “making safer choices” about contacts and activities outside the facility, she says.
"We have communities that would probably be more liberal than we would want to be as far as reopening, but we do have a lot that have been very conservative, and we don't fault them for that,” Kinzie says. “We see ourselves as trying to make sure we're balancing both that risk and concern for safety but also the significant benefit that can happen for the resident and for their family psychosocially."
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Access for essential caregivers can be revoked if they fail to observe safety practices.
Christopher Laxton, executive director of AMDA-The Society for Post-Acute and Long-Term Care, a professional organization for medical staff at long-term care facilities, says he worries about states moving too fast to reopen nursing home doors. But he also says essential caregiver programs can be “part of the solution” to what he calls “the isolation pandemic.”
"There are very clear medical consequences connected to the isolation of an older adult, especially an older adult who may be living with dementia,” including weight loss, high blood pressure and organ failure, Laxton says. “It's been demonstrated in the literature of medical care. This isn't just a sort of a softer, regrettable issue. It's really critically important."
Sloan, of LeadingAge, says long-term care providers agree that maintaining family connections is “crucial to residents’ well-being.” But the pandemic puts providers in a terrible bind.
"Nursing homes are striving to find safe ways to engage family members in visits and to assist their loved ones,” such as tech-based virtual visits or socially distanced outdoor visits, Sloan says. “State mandates decreeing that providers allow family caregivers onsite for visits pose very real challenges.”
"Every essential family caregiver undoubtedly has only the best intentions,” she adds, “but we are all too familiar with how easily an asymptomatic carrier of this virus can trigger a deadly outbreak.”
Ryan says that “AARP is fighting to ensure all families and friends can visit loved ones in long-term care facilities” and that doing so safely requires facilities to meet U.S. Centers for Disease Control and Prevention (CDC) guidelines on infection prevention, “including providing COVID testing and PPE” to visitors.
"Designated caregivers would not be needed if the nursing home met the CDC guidelines,” she says. “Our goal is for all residents and their loved ones to be allowed to visit as they choose."