Updated December 12, 2023 at 7:29 AM ET

Caring for an older person can be tough, especially if they have complex conditions and you're an adult child living hours away. Private care management is a word-of-mouth business that's been growing over the past few decades to meet some of the challenges of modern caregiving.

Anne Sansevero spent 16 years as a nurse in New York City, and she'd seen lots of older patients leave the hospital, only to be readmitted soon after because they couldn't cope once they were back home.

"It was then that a lightbulb went off that there's a huge need for care coordination in the community," she says, describing how she decided to start her own business as a care manager. "A holistic, focused type of care that can really prevent these readmissions."

Sansevero started out working alone. Almost two decades later her company, HealthSense, employs six nurses and one social worker. Families call when a crisis erupts.

"For example, their loved one has had a fall. It's the fourth fall, they don't know how to stop them from falling in the home, they're not taking their medications correctly," Sansevero says. "So we will work with that family to do a deep dive and assessment on why they're having the problems they're having."

Sansevero or one of her team assesses a client at home. They check the person's physical and cognitive state, as well as their environment.

"You have to be a detective," she says. "You have to look in the fridge to see what kind of food they're eating. Is there expired food in the fridge?"

Then there are medications. She notes which ones the person is taking, and whether any are unused. She also scans the home for safety risks. Some rugs may be easy to trip on and grab bars may be needed in the bathroom if the older person is going to be able to keep aging in place.

After assessing the client, Sansevero comes up with a care plan.

None of this is cheap. According to the Aging Life Care Association, which represents the burgeoning profession, care managers charge anywhere from $100 to $300 an hour, depending on their location and experience. The association has nearly 2,000 private care managers as members, and it projects that demand will keep increasing as the population ages.

'Solo-agers'

Sansevero says no matter who is paying — the older person or a family member — her loyalty is always to the older adult who needs care and she tailors her advice to them.

She says a growing number of her clients are solo agers — people aging alone. One of them is 86-year-old Libby Daniell.

Daniell is spry and petite, with blue eyes and wavy gray hair. She lives in a large, sunny apartment on Manhattan's East Side that she's owned since the 1960s. The shelves are lined with framed photographs, some in color, others in black and white, showing her parents and brother over the years.

Daniell had a long career in advertising and a tight-knit family, but they're gone now. She was briefly married when she was younger and didn't have children.

She says her health is good, but she hired Sansevero because she wants a backup plan.

"So far I'm lucky but I like having this in my hip pocket so that I know that someone will be there when things go awry," she says.

Sansevero meets with Daniell every few months to assess her and see whether she's OK to stay in her longtime home. Daniell has no wish to move from her beloved and familiar surroundings. She says she tries hard to stay healthy so she can stay put. Still, she accepts that she may need more help at some point down the line.

"I'm trying to hold onto my independence as long as I can," she says. "I don't want to start to become dependent too soon."

Peace of mind

Discussions about moving are partly what prompted Lisa Dow of Austin, Texas to find a care manager for her mother. Her mom, now 88, lives a few hours away and was reluctant to downsize. Dow and her sisters were worried about her safety at home, especially as her memory began to deteriorate.

Their care manager lives close to their mother, and was "the outside third party who could come in and at times probably had a little bit more patience with my mom than my sisters and I did, because we'd been so in the middle of it," says Dow, who is in her 60s.

Her mother came to trust the care manager and eventually agreed to move. She now lives in an independent living facility.

Shortly after moving and while she was still driving, Dow's mother got lost in her new neighborhood and couldn't describe where she was. Her care manager found her using a location-sharing app, and guided her home.

"Peace of mind is an understatement," Dow says.

No guidebook

But it's not just middle-aged children who seek this kind of help.

Audrey Tunstall is 24 and lives in Greensboro, North Carolina. Last year she had to move her mom to a memory care facility when her mother was diagnosed with early onset dementia at the age of 60. Tunstall was in her first job after college, living away from home. She felt completely overwhelmed.

"I did not know what to do," she says. "There's no guidebook for when this happens."

Tunstall is an only child, and her parents are divorced. Almost everything fell to her.

Suddenly she was meeting with doctors, dealing with reams of paperwork, and becoming her mom's Power of Attorney. At the same time, "I was still learning how to take care of myself."

A friend recommended a local care manager. Months later, Tunstall is able to relax a bit as the care manager handles her mother's medications, fields her anxious texts, and questions the living facility over extra charges that appear on the monthly bill.

"And then she will send me a report at the end of the month," Tunstall says. "I don't have to worry about stressing, "Is my mom safe? Is she OK?" Everything like that. It's just a game changer."

Dr. Stephanie Nothelle is a geriatrician and assistant professor at the Johns Hopkins University School of Medicine. She says hospitals and medical practices employ their own care managers, but they're often overwhelmed with patients.

Private-pay professionals can be more effective since they work directly for the client, she says.

"I just wish it were a bit more equitable," Nothelle says. "I find that sometimes the people who would really benefit the most because they have so much going on in their lives are the people who can't afford it."

Nothelle says most older people and their families have no choice but to struggle with a complicated, fragmented health care system, managing their own care as best they can.

Copyright 2023 NPR. To see more, visit https://www.npr.org.

Transcript

JUANA SUMMERS, HOST:

Caring for an older person can be tough, especially if they have complex conditions and their adult child lives far away. More people are hiring private care managers to help, as Ashley Milne-Tyte reports.

ASHLEY MILNE-TYTE, BYLINE: Anne Sansevero had spent 16 years as a nurse in New York City when she started her own business as a care manager. She'd seen lots of older patients leave the hospital only to be readmitted soon after because they couldn't cope once they were back home.

ANNE SANSEVERO: It was then a light bulb went off that there's a huge need for care coordination in the community, a holistic, focused type of care that can really prevent these readmissions.

MILNE-TYTE: She started out working alone. Almost two decades later, she employs six nurses and one social worker.

SANSEVERO: We'll get called for crisis, that their loved ones had a fall, it's the fourth fall. They don't know how to stop them from falling in the home. They're not taking their medications correctly. So we will work with that family to really do a deep dive and an assessment on why they're having the problems they're having.

MILNE-TYTE: Sansevero or one of her team assesses a client at home. They note the person's physical and cognitive state as well as their environment.

SANSEVERO: You have to be a detective. You have to look in the fridge to see what kind of food they're eating.

MILNE-TYTE: Which meds are unopened and which rugs are easy to trip on. Then they come up with a care plan. None of this is cheap. According to the Aging Lifecare Association, care managers charge anywhere from $100 to $300 an hour, depending on their location and experience. Sansevero says a growing number of her clients are solo agers, people aging alone. One of them is Libby Daniell. Daniell is 86, spry and petite, with blue eyes and wavy gray hair. The shelves of her Manhattan apartment are lined with framed photographs.

LIBBY DANIELL: My sweet mom, who I love, my brother, my mother and me.

MILNE-TYTE: Daniell had a long career in advertising and a tight-knit family, but they're gone now. She didn't have children. She says her health is good.

DANIELL: So, so far, I'm lucky. But I like having this in my hip pocket so that I know that someone will be there when things go awry.

MILNE-TYTE: Sansevero meets with Daniell every few months to assess her and see whether she's OK to stay in her home of more than 50 years.

DANIELL: I'm trying to hold on to my independence as long as I can. I don't want to start to become dependent too soon.

MILNE-TYTE: Still, sometimes things go wrong quickly. Audrey Tunstall lives in Greensboro, N.C. Last year she had to move her mom to a memory care facility when her mother was diagnosed with early onset dementia.

AUDREY TUNSTALL: When that - all of it happened, it just felt like I was drowning.

MILNE-TYTE: Tunstall was 23. She's an only child. Her parents are divorced.

TUNSTALL: I did not know what to do. You know, there's no guidebook for when this happens.

MILNE-TYTE: A friend recommended a local care manager. Today, the care manager handles Tunstall's mother's medications, fields her anxious texts and questions her living facility over extra charges.

TUNSTALL: And then she will send me, like, a report at the end of the month. And I don't have to worry about stressing, is my mom safe? Is she OK? Everything like that. It's just a game-changer.

MILNE-TYTE: Stephanie Nothelle is a geriatrician and assistant professor at the Johns Hopkins University School of Medicine.

STEPHANIE NOTHELLE: I just wish it were a bit more equitable.

MILNE-TYTE: She says private pay professionals can be highly effective since they work directly for the client. But...

NOTHELLE: I find that sometimes the people who would really benefit the most, because they have so much going on in their lives, are the people who can't afford it.

MILNE-TYTE: Nothelle says most older people have no choice but to struggle with a complicated, fragmented healthcare system, managing their own care as best they can. For NPR News, I'm Ashley Milne-Tyte. Transcript provided by NPR, Copyright NPR.

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