I'm ready to leave the hospital, but I don't feel like I can take care of myself at home yet.
Or just finished a few weeks of rehab. Can you manage a complex medication regimen along with shopping and cooking?
Perhaps you fell in the shower and your family wants you to arrange for help with bathing and dressing.
Of course, there are facilities that provide such support, but most elderly people do not want to go there. They want to stay home. That's the problem.
Most people don't want to move when older adults are experiencing difficulties in daily life due to frailty, worsening chronic conditions, or the loss of a spouse or companion. Decades of research shows they want to stay in their homes for as long as possible.
This means they need home care from family, friends, paid caregivers, or both. However, paid home care is one of the most strained areas of the long-term care system, with a severe labor shortage despite rapidly increasing demand due to an aging population.
“This is a crisis,” said Madeline Sterling, a primary care physician at Weill Cornell Medical College and director of Cornell University's home care workforce initiative. “It's not really working for the people involved,” including patients (who may be young people with disabilities), families, and home care workers.
“This is not about what's going to happen in 10 years,” said Stephen Landers, chief executive of the National Alliance for Care at Home, an industry group. “If you search for home care aides on Indeed.com in Anytown, USA, you'll see an eye-popping list of aides.”
However, despite this challenging backdrop, there are some promising alternatives for improving the work of home care workers and improving patient care. And they are growing.
Background: Researchers and elder care managers have been warning about this looming disaster for years. Home care is already one of the fastest-growing professions in the United States, with 3.2 million home health aides and personal care aides expected to work in 2024, up from 1.4 million a decade ago, according to research and advocacy group PHI.
However, according to the Bureau of Labor Statistics, the country will need about 740,000 more home care workers over the next 10 years, and hiring them will not be easy. Costs to consumers are high, with wide geographic variation, with home health aides expected to cost an average of $34 an hour by 2024, according to an annual study from Genworth and CareScout.
But aides earn, on average, less than $17 an hour.
These remain precarious and low-paying jobs. Of the predominantly female workforce (about a third of whom are immigrants), 40% live in low-income households, and most receive some form of public assistance.
Even if the agency that employs them offers health insurance and they work enough hours to qualify, many cannot afford the premiums.
Unsurprisingly, turnover rates approach 80% annually, according to research by the ICA Group, a nonprofit organization that promotes co-ops.
But not everywhere. One innovation is still small but growing. It is a home care cooperative owned by the workers themselves. The first and largest Cooperative Home Care Associates, located in New York City's Bronx, was founded in 1985 and currently employs approximately 1,600 home care aides. ICA Group currently counts 26 such employee-owned home care businesses nationwide.
“These co-ops are seeing extraordinary results,” says Jeffrey Gusoff, a family medicine physician and health services researcher at UCLA. “They have half the revenue of traditional agencies, retain clients twice as long, and pay their owner-employees $2 more per hour.”
When Gusoff and his co-authors interviewed co-op members for their qualitative study in JAMA Network Open, “we expected to hear more about compensation,” he said. “But the single biggest response was 'I have more say' in terms of working conditions, patient care and the running of the co-op itself.”
“Workers say they feel more respected,” Gusoff said.
The ICA Group intends to increase the number of co-ops nationwide to 50 co-ops within five years and 100 co-ops by 2040 through initiatives that provide financing, business guidance and technical assistance.
Another approach that is gaining popularity is registries, which allow home care workers to connect directly with clients who need care, often bypassing oversight or background check agencies and absorbing about half of the fees consumers pay.
One of the largest registries, Carina serves workers and customers in Oregon and Washington. Established through an agreement with the Service Employees International Union, the nation's largest health care union, it serves 40,000 health care providers and 25,000 customers. (Approximately 10% of home care workers are unionized, according to PHI analysis.)
Carina functions as a free “digital recruitment hall,” said Nidhi Milani, the company's chief executive officer. Outside of the Seattle area, it serves only customers who receive care through Medicaid, the largest funder of home care. State agencies handle the paperwork and oversee background checks.
Hourly wages paid to independent providers listed on Carina are set by union contracts and are typically lower than what agencies charge, while workers can earn wages starting at $20 and receive health insurance, paid time off, and in some cases retirement benefits.
Other registries may be operated by states, such as Massachusetts and Wisconsin, or by platforms such as Direct Care Careers, which is available in four states. “People want someone who fits in with the person coming into their home,” Milani said. “And individual providers can choose their clients. It's a two-way street.”
Finally, recent research shows how additional training for home care workers can make a difference.
“These patients have complex symptoms,” Sterling said of the aides. Home caregivers who measure blood pressure, prepare meals, and help people move can spot troubling symptoms when they occur.
A recent clinical trial conducted by her team measured the effectiveness of a 90-minute virtual training module on the condition and management of heart failure for home health aides who care for patients with heart failure, “the number one cause of hospitalization for Medicare beneficiaries.”
“Swelling in the legs, shortness of breath. These are the first signs that the disease is not under control,” Dr. Starling said.
The study, which involved 102 assistants at VNS Health, a large nonprofit institution in New York, showed that training increases knowledge and confidence in caring for patients with heart failure.
Additionally, giving aides a mobile medical app to send messages to their supervisors led to fewer 911 calls and fewer patient emergency room visits.
Smaller initiatives such as registries, co-ops, and training programs do not directly address home care's most central problem: cost.
Medicaid, which provides home health care for low-income seniors with few assets, will be cut by more than $900 billion over the next 10 years under the Trump administration's new budget. In theory, wealthy people could pay out of pocket.
However, “middle-class retired families either spend all their money trying to qualify for Medicaid, effectively going bankrupt, or they live without it,” Landers said. Options such as assisted living and retirement homes are even more expensive.
The United States has never committed to paying for long-term care for the middle class, and it seems unlikely to do so under this administration. Still, savings from such innovations could reduce costs and help expand home care through federal or state programs. Some tests and pilots are underway.
Home care workers “have a lot of insight into a patient's condition,” Sterling said. “We learned that if we want to keep patients in their homes by training them and providing them with technology tools, there is a way to leverage the workforce we already have to do it.”
New Old Age is produced in partnership with The New York Times.
