As the coronavirus sweeps through Massachusetts nursing homes, leaving a trail of deaths that now tops 1,600, a parallel crisis has been playing out with far less scrutiny in another setting housing vulnerable seniors: assisted living.
Massachusetts officials have been quietly tracking COVID-19 cases and deaths in the state’s 260 assisted-living facilities — many of which contain memory care units — since last month. Word had trickled out of outbreaks at Boston-area residences, such as Sunrise of Arlington, The Falls at Cordingly Dam in Newton, and Goddard House in Brookline.
On Friday, for the first time, officials posted a list of sites with two or more cases. The list, like the one posted for nursing homes, only includes a range of cases for each assisted-living residence, not an actual number. And it doesn’t disclose deaths at the sites. But it shows 139, more than half the total, have two infections, including a dozen with 30 or more.
Deaths at nursing homes and rest homes make up 56.3 percent of overall coronavirus deaths in Massachusetts as of Sunday, according to the state’s tally. But the Baker administration doesn’t include assisted-living deaths in that tally, which means it understates — perhaps significantly — the extent to which senior housing facilities lie at the heart of the public health crisis.
Some elected officials want the state to disclose more.
“This is a disease that has targeted aging adults,” said state Representative Ruth Balser, a Newton Democrat who filed a bill requiring the state to report COVID-19 deaths not only at assisted-living residences but also at publicly subsidized senior apartments. “Transparent and accurate reporting can help drive resources to the places that need it.”
Balser’s bill passed in the House of Representatives last week and is now before the Senate. Governor Charlie Baker hasn’t said whether he would sign the measure, which would require fuller disclosure at more senior housing sites, and in greater detail than his administration is now doing.
State officials began deploying National Guard technicians to assisted-living centers on April 13 as part of a mobile testing program. Dozens of deaths have been confirmed by assisted-living operators in response to press inquiries, but the death count at many Massachusetts facilities is unknown.
Assisted-living communities, which tend to be more affluent than nursing homes, have about 17,000 residents in the state, up from 14,000 in 2014, according to the Massachusetts Assisted Living Association in Waltham. In contrast to nursing homes, which have about 38,000 residents covered mostly through MassHealth, the state Medicaid program, most assisted-living residents pay monthly fees by drawing on savings, pensions, Social Security, or from selling homes.
While they’re designed to be more residential than institutional, and don’t provide 24-hour skilled nursing, assisted-living facilities — where older residents live together in close quarters and often need help eating or bathing — are proving susceptible to the highly transmissible virus.
Like nursing homes, assisted-living operators have varied widely in how they’ve communicated with residents, families, and the public about their coronavirus exposure. While some have been open from the start, others have tightly controlled information, telling only the families of residents testing positive or sometimes keeping even them in the dark.
Ellen McDonald, a Tufts University research librarian who was a friend and guardian to 92-year-old Norma Ricci, said her friend’s assisted-living residence, Sunrise of Arlington, told her April 1 that a nurse who worked on Ricci’s floor had been infected. A week later, McDonald was told Ricci was rushed to Mount Auburn Hospital in Cambridge, but there was no mention of coronavirus. The next day, Mount Auburn called to say Ricci had COVID-19. McDonald donned full protective garb to visit her friend on Easter. Ricci died three days later.
McDonald said Sunrise nurses told her many residents were coughing and some staffers had stopped coming to work, but there was no official word from management.
“People need to know the conditions their moms and dads and loved ones are living under,” said a frustrated McDonald, who had been a Lexington friend and neighbor of Ricci for more than three decades before becoming her guardian. “I told [Sunrise] that, even if they couldn’t tell us who’s sick, we needed to understand what was happening there.”
In a statement, Sunrise Senior Living said nine residents of its Arlington facility have died and 25 have tested positive. The statement said Sunrise has regularly updated residents and families by phone and e-mail. It quoted a regional vice president, Thomas Kessler, as saying, “Communication has always been a source of pride at Sunrise of Arlington.”
Benchmark Senior Living, a Waltham operator that runs a chain of assisted-living communities across the Northeast, has been public about outbreaks at its facilities.
In the state’s worst known assisted-living outbreak, 21 residents have died at the Cordingly Dam site in Newton. Benchmark chief executive Tom Grape declined an interview request. A spokeswoman said he is focused on “protecting the health and safety of Benchmark’s residents and associates" and keeping its communities up to date.
Communication is especially important to families of assisted-living residents with dementia, who often don’t understand the threat they face or why their loved ones no longer visit.
“They’re frightened of being alone,” said Sue FitzPatrick of Medford, a facilitator of an Alzheimer’s Association support group — now forced to meet via Zoom — for families of people with dementia, some of whom are in assisted-living sites. “If their families can talk to them on FaceTime, they’ll say, ‘When can you come to see me?’ If you explain [the pandemic] to them, they’ll forget it five minutes later.”
The state’s delay in disclosing assisted-living data may have stemmed from a patchwork regulatory system for senior housing. While skilled nursing facilities are licensed by the state Department of Public Health, assisted-living facilities are certified by the Executive Office of Elder Affairs and have been using a reporting system different than the DPH’s.
State spokesman Tom Lyons said officials wanted to make sure data from assisted-living sites was complete before posting. “We are providing one of the most comprehensive daily data reports of any state in the country," he said.
Because assisted-living sites aren’t considered medical facilities, they’re more lightly regulated. The residential model is only about 30 years old, and the regulatory structure was established in Massachusetts in 1995. Since then, the sector has grown even as the number of nursing homes in the state has shrunk by about a third.
Brian Doherty, president of the assisted-living association, said residents typically have their own apartments, and have customized service and care plans built into their monthly fees, which can vary widely. Most residents pay privately.
The more spacious living quarters, and precautions taken by assisted-living residences at the outset of the pandemic, haven’t spared the facilities from the coronavirus.
“Our members are already reporting every positive case [to the elder affairs office] for residents and staff,” Doherty said. “We look forward to helping the state collect that data.”
Among those at highest risk are residents living with Alzheimer’s disease or other forms of dementia and live in memory care units in their communities, or in residences serving dementia residents exclusively.
The health crisis, which has closed facilities to visitors for the past six weeks, has left many residents isolated and scared, say family members and advocates, especially at sites that have had to move residents into “Covid-positive” or “Covid-negative” wings.
“COVID-19 has created a lot of upheaval in these facilities,” said Susan Antkowiak, vice president at the Massachusetts and New Hampshire chapter of the Alzheimer’s Association. “And the fact that loved ones can’t come in to see them now makes it very depressing.”