Dr. Marc Rothman visits a lot of patients with dementia and their families. He is a geriatrician who makes house calls in New York City and its suburbs.
“Families are often slowly tiptoeing into crisis,” he says, gradually engulfed by the demands of caregiving and the vagaries of the health care system.
He says caring for a loved one at home can work well for years, but when the dementia becomes advanced, that means “essentially creating a nursing home for one — it is incredibly complicated,” says Rothman, who is also the CEO of a tech company called Lizzy Care, which helps families navigate the world of dementia. “You need to take care of the care. You need to take care of the diet, the meds, the recreation. You need to deal with rehab and appointments, and you’ve got to somehow care for yourself at the same time.”
In addition to general overwhelm, specific things can prompt family caregivers to move their loved one to a nursing home or other facility. A major one is incontinence, Rothman says. Other triggers include an uptick in increased paranoia, aggressive outbursts, and the tendency some people have to up and leave wherever they are, then get lost.
This behavior is often referred to as “wandering,” though not all dementia experts use the term. Elizabeth Edgerly is senior director for community programs and services for the Alzheimer’s Association. “At the most basic level, wandering means that someone walks away and has trouble finding their way back,” she says. But she says the person with dementia often has good reason for taking that action in the moment — one reason why the term “wandering” feels inaccurate to some.
“It may be they want to go home, even though they’re already in their home, but the home that they’re in now doesn’t feel right,” Edgerly says. “Sometimes people leave because they gotta get to work, in that job that they retired from 30 years ago, or they need to pick the kids up — the kids who are all grown.”
“Elopement” is another term used by people in the caregiving field, particularly when the person with dementia leaves a secure area such as their home and may then get into danger.
A terrifying episode for one couple
Edgerly says this behavior is more likely to occur as the disease progresses. It can be terrifying for caregivers like Valerie Staats. She and her wife, Shelley Schultz, spent decades working in health care. Schultz is in her early 70s and has Alzheimer’s. Staats takes care of her at their home near Buffalo, N.Y.
An event back in the fall caused Staats to rethink at-home care. She’d driven them back home after a long day, and settled her wife down for a nap. She then went back out to the car to clean up. “I thought, ‘I’ll rest for about five minutes,'” she says. “Hours later I woke up.”
She’d been exhausted, and now it was the middle of the night. She went inside to check on Schultz. She wasn’t in the bedroom, so Staats, calling her name, searched the rest of the house with a creeping sense of dread. Schultz was gone. The air tag Staats uses to track her wasn’t even showing a signal.
“Now my panic is like, right up there,” Staats says. “Panic can fill your chest. And I go out, looking for her, driving around, couldn’t find her.”
Staats called the police. A search began and continued for hours. As the sun came up the police told her they needed to switch tack from an active search to waiting for reports of any sightings. Staats was close to despair. Then she overheard an officer saying, “They found her.”
Shelley Schultz was found just a block from the house. She was cold in the fall air, but OK. Edgerly says if a person is found within 24 hours, as Schultz was, a good outcome is more likely. She says beyond that timeframe “the statistics are really frightening.”
Grim statistics, expensive care
Of the 60% of people with dementia who get lost at some point during the course of their disease, she says, “almost half of those people [who are lost for more than 24 hours] will be seriously injured, or it can even result in death,” often due to exposure to the elements or to traffic accidents.
After that incident, Valerie Staats was flooded with guilt. She now worries constantly about keeping Schultz safe, and has upped the number of sensors and locks she has all over the house.
Staats also has health problems, and the strain of trying to keep herself, Schultz, the house and their pets going is getting to be too much. She’s close to moving Schultz to a secure memory care unit at a nearby senior living facility they both know.
Memory care is more than just a place to keep those with advanced dementia safe, usually — but not always — within locked wings or on locked floors. Facilities train staff in dementia care, which has different features than standard nursing home care.
“We’re complete nerds about improving the quality of life for people with dementia,” says Loren Shook, president and CEO of Silverado Memory Care, which has multiple facilities in 10 states “Our focus is to not see what you can’t do. Our focus is to see what you can do, and let’s build on that.”
Shook says being in memory care can open up a new lease of life for some people with dementia, because the staff can involve them in things they enjoy, something many family caregivers don’t have time to do on top of everything else.
“One of our tenets is to give people purpose again and to engage them in purposeful activities,” he says. “You like to teach? Well, we’ve got children here and, you know, maybe you want to work with Sally on her homework.”
He says over the years his staff has helped thousands of people with dementia to re-learn skills their families thought they’d lost, such as the ability to feed themselves and the ability to walk.
He adds that wandering, aggression, and other behaviors become less common when the person with dementia is busy and feels that sense of purpose. As well as having kids visit, Shook says Silverado lets residents keep their pets to boost quality of life.
Memory care is expensive, and some families pay out of pocket. Shook says prices at Silverado start at $10,000 a month and vary depending on things like the location of the facility, and a shared versus a private room.
To interact as a couple again
Valerie Staats recently found out from the neurologist that Shelley Schultz is in the severe stage of the disease. Staats feels the time is right for her wife to move to the memory care unit of the senior living facility nearby — a possibility the couple have talked about. The two of them have visited the place together many times, and Schultz once stayed there for a few weeks when Staats needed to recover after a surgery. She trusts the “very friendly, knowledgeable staff” to give her wife, a former nurse manager herself, the best possible experience.
She will miss sleeping next to her spouse, though.
Nighttime is one of the few times when Staats sometimes feels a sense of their old intimacy — when she isn’t just telling Schultz what to do and what not to do. Schultz doesn’t communicate verbally much any more. It’s one of the things Staats misses, since Schultz used to be such a talker. But this evening, as Staats tucks her in and tells her she loves her, Schultz responds with “I love you, goodnight.”
If Schultz does live in memory care, Staats says, she hopes to spend their time together as a loving spouse, not just a caregiver.
This article was written with the support of a journalism fellowship from The Gerontological Society of America, The Journalists Network on Generations and The John A. Hartford Foundation.