On a frigid night last March, Ellen Hinds, who was 85 and had dementia, left her apartment building in her retirement community north of Philadelphia wearing only light pajamas. There was snow on the ground, and her feet were bare. She carried a potted plant but no key. It was 2:15 a.m.
Five hours later, she was found near a different door lying facedown in the snow. She was turning blue. Her feet showed signs of frostbite. There were icicles on her hands and feet, according to a report from first responders.
She died a week later having never regained consciousness. Family members said she appeared to be in "great agony." Her death certificate lists "complications of hypothermia" as the cause of death.
Her son, Blake Rowe, a drug company scientist, has filed suit against Shannondell at Valley Forge in Audubon and its security company, Universal Protection Service LLC, claiming that they should have done more to protect his mother. She had been allowed to stay in an independent-living apartment after Shannondell knew she had a tendency to become confused and wander aimlessly, the suit says.
"I put my trust in them. They said they would do an assessment they never did," said Rowe, who got the "horrible" news that his mother was in the hospital as his plane landed in Florida for his honeymoon. As for the security company, he said, "If they were doing their rounds, someone would not be at a door for five hours freezing to death."
Rowe's King of Prussia-based lawyer, Robert Snyder, said Shannondell should have put Hinds "in the right place to get the right care so she'd still be alive today."
The case is a nightmare scenario for many families. The Alzheimer's Association estimates that up to 60 percent of dementia sufferers will wander, a hard-to-define behavior that involves traveling by foot (or car) in ways that don't make sense to the rest of us. A man who hasn't worked for years may head for the office. A woman may pace the halls of her assisted-living facility with no goal she can name. The danger comes when brain damage causes wanderers to get lost and then makes it hard for them to seek help in a rational way. It's particularly scary in the winter, when frailty mixed with subfreezing temperatures can quickly turn deadly.
The Hinds case also illustrates a trend in senior housing — at all levels of care, including independent living, residents are older and have more health problems than in the past — with safety implications that may surprise families. Most seniors want to be as independent as they can for as long as they can. Families shopping for senior apartments may want to look beyond the quality of the food or beauty of the grounds and ask what will happen when a loved one declines: Were your buildings and security designed with dementia in mind? Whose job is it — the family's or the facility's — to start the conversation when a resident needs more help?
‘Nobody’s bothered to notice’
It is impossible to know how many caregivers have gotten calls like the one Rowe received. Many wandering incidents never involve police or health authorities. Spokesmen for the Pennsylvania and federal human services agencies said they could not find statistics on people who had left assisted-living facilities and nursing homes or on deaths related to wandering. Laurie Brewer, chief of staff of the New Jersey Long-Term Care Ombudsman, said there were 65 cases of wandering from nursing homes and 26 from assisted living or other residential health care in 2017. Reporting is not required for wandering from independent-living facilities or for private homes.
Robert Koester, an expert on search and rescue with special expertise in elders who wander, estimates that roughly 250,000 people with dementia will be reported missing to police this year. The number will rise as baby boomers age. About half of older people wander from their homes, he said, while the rest find their way out of institutions like nursing homes and assisted-living facilities. In an analysis of 800 searches involving people with dementia, 6 percent of those in urban areas died compared with 8 percent in wilderness.
"Nobody's bothered to notice how big this problem actually is," he said.
An Allentown nursing home lost its license in October in response to the death last summer of a 77-year-old resident with Alzheimer's who wandered from the facility. Her body was found in a ditch three weeks later. A 2016 lawsuit involved a man in his 90s who managed to leave the Arden Courts Memory Care Community in King of Prussia in February 2014 and suffered frostbite. An 87-year-old man was found dead on a cold night in 2014 after wandering outside of Arden Courts of Cherry Hill, an assisted-living facility.
But Rowe's lawsuit explores relatively new legal territory. While lawyers have sued nursing homes and assisted-living facilities, Snyder and other local elder law experts said they were unaware of cases involving residents of independent living who have wandered. Ellen Hinds got about 20 hours a week of extra help from a retired nurse but was not under constant supervision.
Shannondell is a Continuing Care Retirement Community (CCRC), a common form of senior living meant to help people remain in the same development as they need more care. According to its website, Shannondell offers a continuum from independent living to nursing home. It has a memory unit for people with dementia.
Shannondell did not respond to repeated requests for an interview. Its lawyer, Peter Callahan, said he was not authorized to speak and referred a reporter to insurer CNA, which did not respond to questions. John Donovan, a lawyer for the security company, also did not respond to a request for comment. In court filings, both sets of lawyers denied wrongdoing. Shannondell's responses to the suit emphasized that Hinds lived independently and that her building was not a medical facility. It denied knowing that she had memory problems and said it was not responsible for her death.
How independent is independent living?
Snyder argues that the expectation of support is different for a resident of independent living in a CCRC than for regular apartment dwellers.
"You're not independent," he said. "You're buying a program for multiple steps for the rest of your life. You're buying a first step."
Hinds had moved from her longtime home in California in September 2016 to be near Rowe, who lives in Skippack. She paid a $145,000 entry fee and monthly rent of $1,845 to live in a gated community with 24-hour security, meals, and activities. While some CCRCs offer stable rents regardless of their level of care, Hinds would have had to pay more for personal, memory, or nursing-home care.
Martin Kardon, a Philadelphia lawyer who specializes in cases involving medical errors and nursing-home neglect, agrees with Snyder here. "Independent living," he said, "is a lot different than renting an apartment at the Academy House."
Michael Ringold, a Marlton lawyer who specializes in nursing-home abuse cases, said this case would be "difficult" because independent-living facilities are not expected to provide supervision. His own mother died after wandering from a memory unit in California in 2016. Even in locked facilities, residents can get out, he said, often because of short staffing.
While independent living is not regulated as a health provider, experts on aging said the line between it and assisted living — adding help with activities like dressing and taking medicine — is blurring.
"Independent living communities are more and more 'independent' in name only," said Jerold Rothkoff, an elder law attorney in Cherry Hill.
These days, people tend to be older when they first come to independent living, and many hire aides to help them stay there. Many resist moving to a higher level of care, either because they don't want to pay extra or, more often, don't want to admit they need extra help.
"Family members hate, hate, hate moving their family members out of independent living," said Julie Thomas, associate director of clinical services for the Alzheimer's Association Delaware Valley Chapter.
Danielle Snyderman, a Jefferson Health geriatrician who works frequently at The Hill at Whitemarsh, a CCRC, said wandering by someone in independent living there would immediately put that resident at the top of the list for a discussion about a higher level of care. Shannondell wouldn't comment on its practices.
Some independent-living facilities said they will admit people they know have dementia, although that typically happens when there is also a well spouse in the picture or an aide.
"These places were not designed to take care of people with dementia," Rothkoff said.
‘She hated the cold’
Ellen Hinds lost her first husband in 1985, the second in 2012. Rowe's brother and only sibling died in 2015 of lung cancer. Rowe then began hearing from her neighbors that his mother was depressed and behaving oddly. She was wandering around at night. She looked for a nonexistent lost dog in the bushes. She thought she saw children in the yard.
Rowe intervened, and his mother wondered if the medicine she was taking for nerve pain was making her hallucinate, but realized she needed more help. She agreed to move to Pennsylvania. Her only concern, said Jenny Hinds, her ex-stepdaughter-in-law and frequent companion, was the climate. "She hated the cold," Hinds said.
Ellen Hinds toured Shannondell and one other facility and liked them both. Rowe pushed for Shannondell because it had more residents, and he wanted her to "get out and meet people." She loved how new and clean everything was. Rowe has pictures of her dancing on New Year's Eve. She walked unaided and had enough stamina for 12-hour excursions to casinos or the mall with Jenny Hinds. Before her death, the two were planning a trip to the Philadelphia Flower Show.
Rowe says he told Shannondell officials from the beginning that his mother had a history of wandering and memory problems, though her symptoms had improved after surgery for the nerve problem in California.
Not long after she moved in, Rowe began getting calls from Shannondell that his mother had been found wandering. At least twice, he was told she'd gone into the parking lot late at night, and he needed to come to her apartment. He took her to his house and brought her back when she seemed all right. He says he took her to a doctor with an office in the Shannondell community, who diagnosed her with Lewy body dementia and told him she would eventually need more care. He assumed, he said, that that information would be shared with Shannondell.
In their response to the lawsuit, Shannondell said that doctor did not work for them, but had an independent practice that leased space.
Rowe said his mother had $900,000 when she died, plenty to pay for a higher level of care. He would have moved her to Shannondell's memory unit, but no one from the retirement community brought it up. Neither did he.
"Their nurses were the ones calling me" about wandering, Rowe said of Shannondell. "I was figuring they should be doing something." Ellen Hinds' agreement with Shannondell gave either her or the community the right to ask for a higher level of care.
Jenny Hinds said the family felt Ellen Hinds was safe at Shannondell. "We were looking to them to guide us," she said. "They said they would help us through this journey."
Snyder says security footage viewed by Erik Snyder, his son and law partner, shows Ellen Hinds trying to get back in the building the night she went out without her key card. The doors have keypads that allow residents to call security with a four-digit code. Hinds, the lawsuit says, is seen repeatedly touching the pad as well as tugging and banging on doors. Robert Snyder said he can't tell whether she failed to punch the right code or the guard failed to respond.
He contends that facilities like Shannondell should make doors safer for residents who can't remember the code needed to summon help, perhaps with vestibules protected from the weather and red buttons that make it easier to call security. David Danton, senior principal with KDA Architects in Voorhees, which specializes in designs for senior housing, said vestibules are unusual for anything other than main entrances.
The lawsuit said the security film showed someone inside the building looking out shortly after 5 a.m. and failing to notice Hinds slumped over a trash receptacle 15 to 20 feet away. By 5:52, the video showed that Hinds had fallen in the snow. She was found around 7 a.m. and an ambulance arrived at 7:20.
Rowe said he filed the suit because "I don't want it to happen to someone else."
COMING NEXT SUNDAY IN HEALTH: How to protect a loved one who wanders.
Glossary of senior housing terms:
Independent living usually refers to an apartment or home within a community that offers services helpful to seniors. Those could include meals, exercise areas, activities, and easy access to medical professionals. It is for people who are independent, but residents can hire aides just like people in private homes.
Assisted living is for people who need more help with everyday activities, like taking their medications properly, dressing, or eating. Unlike other states, Pennsylvania has two kinds of facilities that cater to people in this category, personal care and assisted living. They have somewhat different regulations.
Skilled nursing facilities are what most of us think of as nursing homes. They're for people with more serious medical problems who need skilled nursing care.
Memory care or dementia units can be either in assisted-living facilities or nursing homes. They are designed and staffed for people with dementia and are often "secure" or locked.