As demand for home health care grows, so does push for better trained workers

Feb. 14--During the last three years of her life, Deanne Alexander's mother cycled through about 30 home care workers.

Some caregivers didn't know how to interact with her mother, who had Alzheimer's disease, said Alexander, of Oak Park. They'd walk up behind her, startling her. They'd grab her hand without asking permission first. They wouldn't talk to her, assuming she was too ill to understand them.

One caregiver left almost as soon as she had arrived, saying she didn't want to catch Alzheimer's.

"A lot of it was attributed to the fact that they came in and were untrained in how to handle somebody with Alzheimer's," said Alexander, whose mother died in 2016. "It's different from handling other people."

In recent years, as families have increasingly turned to outside caregivers to help their loved ones spend their final years at home, many home health care agencies have started to offer specialized services for families like the Alexanders. Many consumers embrace the concept, saying specialized training for home care workers -- who often receive little pay for difficult jobs -- is long overdue.

But questions remain about exactly how much training is enough.

"It's more highly skilled work than it ever was and yet the training requirements don't really reflect what home care workers are being expected to do," said Kezia Scales, director of policy and research at PHI, a research and consulting organization that advocates for the nation's direct care workforce.

By any measure, home health care is a booming industry that includes a range of workers, such as nurses, certified nursing assistants, aides who provide small amounts of medical care and workers who help with daily tasks of living.

In Illinois, the number of home care workers -- those providing only minimal medical care or no medical care at home -- more than doubled, from 37,420 in 2005 to 81,160 in 2015, according to PHI.

It's the training of those non-medical workers, who help with bathing, eating and dressing, that has drawn some concern. Illinois requires non-medical workers employed by agencies to get eight hours of training a year.

That requirement, "isn't enough," said Cissie Gerber, assistant agency manager for Right at Home North Suburban Chicago, a home care franchise in Northbrook. The company is among those that offer its workers additional training and specializes in certain conditions. The franchise offered its workers at least another four or five hours of training last year, and hopes to offer even more in the future, Gerber said.

Sam Cross, owner of Broad Street Home Care, based in Wilmette, agrees. "It doesn't add a ton of value in my opinion," he said of the state's requirement. His company specializes in caring for patients with Parkinson's, Alzheimer's and dementia, among other things, offering additional training. Workers get another seven or eight hours of , on top of the state's requirement, as well as ongoing client-specific training from nurses.

Some experts, however, also question whether even additional, specialized training makes much of a difference.

"When they say they're specializing, in my opinion, that is a branding and marketing decision," said Dr. Mark Werner, a director with health care consulting firm the Chartis Group. "They're trying to stand out in the crowd against other home health agencies."

Indeed, for the agencies, offering such specialized services can be more lucrative. Early findings by Home Care Pulse, an industry research and consulting firm that puts out an annual study on the industry, show that agencies can charge more for such services. In the Chicago area, agencies, in general, charged a median of $24 an hour for a home health care aide in 2018, according to Genworth, which sells long-term care and mortgage insurance, among other things.

Werner said he doubted that an extra six hours of training will substantially improve a caregiver's work, "but if you work day-in and day-out only with Alzheimer's patients or only with Parkinson's patients, over time, that will matter."

And some agencies that say they specialize might not provide any additional training at all, said Jennifer Belkov, vice president of public policy for the Alzheimer's Association Illinois Chapter.

That's part of the reason the association pushed for Illinois to require anyone caring directly for patients with Alzheimer's or a related dementia to get six hours of training in the conditions when they first start working and then another three hours a year after that. Gov. Bruce Rauner signed a bill into law in 2016 mandating that extra training and another bill in 2018, slightly modifying that law.

It's a start, Belkov said. "We feel like that's going to help with the basics," she said.

She'd love to see workers get even more training than that, but she acknowledges the realities of the home care industry. Many caregivers work long hours for little pay, leaving little time or resources for training. Personal care aides working in home health care made an average of $10.40 an hour in 2017, according to the Bureau of Labor Statistics.

It's also a profession notorious for high turnover, given the pay and the difficulty of the work. Nearly 72 percent of home care workers in the Great Lakes region left their jobs in 2017, according to a study released last year by Home Care Pulse.

That was one of the problems Alexander faced in finding appropriate care for her mother, she said. Alexander, who volunteers as an advocate for the Alzheimer's Association, was among those who pushed for the additional six hours of training in Illinois. But she said training alone doesn't necessarily ensure proper care.

One of the agencies Alexander used for her mother said it had caregivers who specialized in Alzheimer's , and those caregivers tended to last the longest, she said. But because of high turnover among workers, the agency sometimes just had to "send whoever they could," Alexander said.

Some experts, however, say extra training could help reduce that turnover, in addition to improving the quality of life for those who want to stay in their homes as long as possible.

Many families say they are happy with the care they receive, and extra training has made a difference.

Harry Nathan Gottlieb's

family hired Broad Street about two years ago to care for his 85-year-old father, who has Parkinson's disease. Broad Street sent them Lori Holland, a certified nursing assistant, who attended a three-day-long training program on Parkinson's disease.

At the training, she used virtual reality to better understand what it's like to live with the disease. She learned the importance of giving Parkinson's patients their pills at the same time each day.

And she learned methods for helping patients with Parkinson's rise from their chairs -- something that can be fraught for people with the nervous system disorder, which affects movement. When she returned, to continue caring for Gottlieb's father, "I just poured all this information into (him)," said Holland, who is chatty and quick to smile, making her a welcome presence in Gottlieb's father's home. She spends four days a week, 12 hours a day, at his home.

It's a far cry from the care Gottlieb remembers his grandfather, who also had Parkinson's, receiving.

"They were nice ladies who liked older people and could be helpful," Gottlieb, of Evanston, said of his grandfather's caregivers. But "Lori understands what the medication is and why he's taking it. She can ask questions and help quarterback his health care. You don't get that without training."

lschencker@chicagotribune.com

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