My mom, who had multiple sclerosis, depended on private duty companions at home — first part-time, then full-time — for nearly 30 years.

Some of these women stole from her. Some ordered groceries on her dime and carried them away at the end of a shift.

Some ignored her cries for assistance when they didn’t feel like getting out of a chair. (How did we know? The phone was next to the bed. There would be a call.) Some were disrespectful and made her feel discounted.

How many caregivers did we go through before we found two wonderful ladies — one from the South Side of Chicago, one from the Philippines — who cared for mom reliably and with considerable sensitivity during the last 20 years of her life? I have no idea. Who wants to remember?

I thought of those long-ago hardships last week when a new study by researchers at Northwestern University’s Feinberg School of Medicine landed on my desk. It’s an eye-opening look at agencies that supply caregivers, companions, homemakers, personal care attendants and non-nursing home health aides to people who need help living independently at home. (Medicare-certified home health agencies, which are federally regulated and provide licensed nurses, were not included in the report.)



This is a fast-growing, almost entirely unregulated business that serves frail seniors with remarkably little oversight or meaningful consumer protection. Consider the study’s findings, based on interviews with 180 agencies in Arizona, California, Colorado, Florida, Illinois, Indiana and Wisconsin.

For the interviews, researchers posed as family members seeking information about caregivers’ qualifications. While this may have biased results, it provides an indication of the kind of issues families can encounter when trying to find reliable help.

• Only 16.5 percent of agencies tested potential caregivers’ basic knowledge about the job and its requirements.

• No agencies assessed potential caregivers’ “health literacy” – their ability to understand medical terms and instructions.

• Only 32 percent of agencies performed drug tests on applicants for caregiver positions.

• No agencies performed criminal background checks on applicants in states other than the one in which they were operating.

• Only 15 percent of agencies provided some type of training before sending a caregiver into someone’s home.

• More than half relied on caregivers’ own assessment of their skills – their ability to administer medications, provide dementia care, or transfer someone from chair to bed, for instance – without independent verification.

• Only 23 percent of agencies supervised caregivers by sending someone to the home monthly to check up on them.

“There are many good agencies out there and caregivers who do fantastic work,” said Dr. Lee Ann Lindquist, an associate professor of medicine at Northwestern and the study’s lead author. “But there are also other agencies just interested in making money and caregivers you wouldn’t want taking care of anyone you know.”

Some agencies in the latter category find staff on Internet sites like Craigslist and send them off to seniors with cognitive deficits or debilitating chronic illnesses without much, if any, preparation. “A cauldron of potentially bad things can happen,” Dr. Lindquist said.

One is financial exploitation, a problem that seems to be on the rise in home care settings, according to Robyn Grant, director of public policy for the National Consumer Voice for Quality Long-Term Care in Washington. Another is the theft and diversion of prescription drugs stocking older peoples’ medicine cabinets, Ms. Grant said.

The challenge for consumers is that there’s no easily accessible public information about which agencies are reputable and which are not. Because this segment of the health care business is virtually all paid privately (Medicare doesn’t cover this kind of care), “no federal or state agencies are tracking it or have an interest in overseeing it,” Dr. Lindquist said.

That leaves families with the responsibility of sorting out what to do, often when some kind of crisis is at hand and the need for caregiving help is immediate.

Dr. Lindquist suggests a series of questions to ask agencies. How do you recruit and screen caregivers? What background checks do you do? What are your hiring requirements? Is health-care training necessary? What kinds of skills do you expect staff members to have?

How do you assess competency? How do you supervise caregivers, and how often? If we’re dissatisfied, will you provide a substitute? Are caregivers insured and bonded through your agency?

Ms. Grant suggests another: Is your agency Medicare-certified or licensed by the state? (If so, you’ll likely have some additional protections.)

PHI, an organization that represents companions, homemakers and other non-nurse caregivers, says that agencies should invest more resources in training and overseeing staff, and that workers should receive the minimum wage and overtime pay.

The National Private Duty Association, which represents agencies, said the Northwestern study’s findings did not accurately reflect its members’ practices. Member agencies carefully screen applicants, and “once a caregiver is hired, our guidelines encourage extensive orientation, care training, supervisory visits, caregiver exams and ongoing safety training,” the organization said in a statement.

What do you think? Have you had good experiences or bad — or a mix of both, as my family did?