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We provide you with articles on brain science, timely topics, and healthy living for those affected by neurologic challenges or seeking better brain health.  

Caregiving
By Paul Wynn

Expert Advice for Finding the Right Home Health Aide

Family caregivers and professionals offer advice for finding the right home health aide.

Illustration by Wesley Bedrosian

In October last year, Phyllis Scantland arranged to take her husband, Bill, out of a skilled nursing facility and care for him at home. He had been diagnosed with Lewy body dementia in 2018 and required round-the-clock attention. After asking around and searching online, she found two aides through a private company. One aide arrived every morning to get Bill ready for the day; the other covered the nights so Scantland could get adequate sleep. “It was the best decision I ever made,” she says. “Those aides loved Bill and provided incredible care until he died in December.”

When the pandemic began in March 2020, some families opted to handle all caregiving themselves. “They didn't want anyone coming into their house to expose their loved ones to the virus,” says Leah Eskenazi, MSW, operations director with the Family Caregiver Alliance in San Francisco. “By spring when COVID-19 was still here, families knew they needed breaks and hands-on help to keep their relatives at home.”

Families who took relatives out of assisted living facilities for fear they'd catch COVID-19 have also turned to home health aides. Here's what they learned, plus tips from neurologists and care managers.

Start Early

“Look into professional in-home care before you think you need it,” says Farrah N. Daly, MD, MBA, a neurologist and neuropalliative care specialist in northern Virginia. Finding the right person doesn't always happen immediately, she says.

Given her positive experience, Scantland definitely wishes she'd hired aides much sooner. “They made a huge difference. I could have used that support earlier.”

Karen Parker of Vienna, VA, hired a part-time home health aide in 2014 for her mother and stepfather. “After my mom had a stroke and my stepfather showed signs of dementia, we needed more help and got 24-hour care,” says Parker. “It didn't take long to see that having aides was the right choice.”

Assess the Care Needed

“Figure out what your loved one needs,” says Eskenazi. If, for example, he or she needs help with bathing, eating, grooming, and general companionship, you might look for an aide known as a custodial or in-home caregiver, says Roxanne Sorensen, a care manager with Elder Care Solutions of WNY outside Buffalo, NY. If the patient requires medical attention, a licensed nurse who can handle feeding tubes, catheters, and medication management may be needed.

Search Carefully

Talk to your relative's neurologist or geriatric care manager to determine the types of service you'll need, says Dr. Daly. Or check the National Association of Area Agencies on Aging's website. The National Association for Home Care & Hospice has a database of more than 33,000 agencies across the country. Companies such as Homecare.com maintain searchable registries of independent home health aides.

Eskenazi recommends checking that home health aides are certified and trained according to state rules. “Contact your local area agency on aging or community service organization to find out what agencies they use,” she says.

Parker hired a care management service to help her find the right agency.

Know Your Options

Aides can be hired independently or through an agency, and both options have advantages. “Private aides may not be certified, but they tend to charge less and offer more personalized care,” says Neha M. Kramer, MD, assistant professor of neurological sciences at Rush University Medical Center in Chicago. “They also have more flexibility in what they can do because they set their own rules.”

“Working with agencies is easier for some families,” notes Kate Caldwell, MA, founder of ElderTree Care Management in Herndon, VA. An agency can find a substitute when aides get sick or take vacations, offer alternatives if aides aren't a good fit, accommodate unpredictable schedules, and help settle disputes. Agencies also have aides with specialized backgrounds in palliative or memory care.

For care during the pandemic, Sorensen recommends agencies. “If an aide gets the virus, an agency has a pool to pull from. With a private aide, the family has to find a replacement.”

Interview Strategically

Because of COVID-19, most agencies arrange video calls between clients and prospective aides, says Sorensen. “First impressions are an important way to choose the best candidate,” she says.

During interviews, ask open-ended questions—such as “Tell me about a difficult situation with a patient or family and how you handled it”—to learn about the candidate's background, experience, and personality, advises Caldwell.

Whether to involve loved ones in the interview process should be decided on an individual basis, adds Caldwell.

Introduce Aides Slowly

“Some loved ones don't want strangers in their homes, or they want family members to provide all the care,” says Dr. Kramer. “If your relative is resistant to the idea, welcome the aide as a companion. Over time, the aide can gradually provide more help and services.” Start off with a few hours a week, she suggests. “If the arrangement works, the hours can be increased.”

To facilitate a smooth transition, family members can demonstrate what aides should do and create a comfortable and familiar vibe, says Eskenazi.

Protect Against COVID-19

Ask agencies or private aides what COVID-19 safety measures they're following, says Dr. Kramer. “Aides should check their temperature daily, wear a mask, use hand sanitizer, maintain social distance when practical, and report any suspected exposures.”

Home health aides do not necessarily qualify for vaccine priority, but there are exceptions, says Sorensen. When Parker's stepfather was vaccinated, his home health aide qualified for the vaccine, under Virginia rules, as his caregiver.

The two home health aides who supported Scantland were tested several times for the virus, and they did daily temperature checks.

Figure Out Financing

The cost of home health aides varies widely according to location, type of service, and length of care. Long-term care insurance, Medicaid services, and even veterans' benefits can cover some of the cost, says Caldwell. For long-term care insurance, families must work with licensed agencies or certified aides, she adds. Medicaid coverage varies by state, so check your state's policy before hiring.

Agencies set an hourly rate but often charge different rates for personal care versus dementia care, says Sorensen. “For private aides, the hourly rates may be a bit lower, but there might be overtime pay,” she says. “In some states, if someone works more than eight hours a day, he or she is eligible for extra pay, so find out your state's requirements through the local area agency on aging.”

Create a Partnership

To ensure a positive working relationship, provide a detailed list of your relative's likes and dislikes. “It can create a better relationship between the patient and the aide,” says Sorensen.

Being open, transparent, and flexible will improve the overall experience. “Treating aides as valued members of the team is really important,” says Dr. Kramer.

Check with aides to be sure you're not asking them to do too much or things they aren't trained to do, adds Dr. Kramer. “There should be two-way communication, so they feel like they're making a difference.”

Scantland agrees. She recalls how her aides encouraged her to switch hospice programs because of the mediocre service. “If it weren't for the aides speaking up and sharing their opinions with me, I would not have changed to a hospice service that provided much better care.”

Resources for Finding Home Health Aides