COLUMBUS — Keeping loved ones with Alzheimer’s or dementia at home has become a calling for many family caregivers in Ohio, especially as COVID-19 has raced through nursing homes.
However, the number of paid in-home care providers for patients with Alzheimer’s disease and dementia is shrinking just as the need is skyrocketing.
“The demand for home and community-based services is significantly higher at the same time as a reduction in the workforce,” said Joe Russell, executive director for the Ohio Council for Home Care & Hospice, a trade association serving more than 600 home care and Hospice programs. “The pandemic has exacerbated an existing untenable situation.”
According to Alzheimer’s Association statistics, 83 percent of help provided to older adults is provided by family members and friends. When the needs become too great for these unpaid caregivers, many families face a cruel dilemma.
Eric VanVlymen, executive director of the Alzheimer’s Association Miami Valley Chapter, said families seeking help with home care is one of the top needs the Association hears about.
“This is such a critical issue because we know that overall family caregivers are often stressed trying to ensure their loved ones’ needs are cared for. Caring for someone with dementia can be emotionally and physically draining. Paid help helps fill the gaps,” VanVlymen said.
Lelia Latta of Columbus has been struggling to find in-home caregivers for her 89-year-old husband, a retired pastor who began showing signs of dementia six years ago.
“In the middle of a sermon, he would blank out,” she said.
Latta had found the perfect solution, pre-pandemic, for keeping her husband safely at home: twice-weekly visits from an aide who helped with bathing, cooking and housekeeping. When that long-term aide left recently, her replacements have proven unreliable and inexperienced.
“You wake up wondering, ‘Are they coming today?’” Latta said. “I have trouble sleeping because of the stress.”
Experts say the shortage is particularly dire among agencies that accept patients with Medicaid, which reimburses at a far lower rate than Medicare.
“I am worried about the future, because the reimbursement from the government can’t keep up with the call for higher pay,” said Lori Wengerd, owner of Home Care Assistance, an Upper Arlington agency that relies mostly on private-pay clients.
Private-pay patients and families fare much better, she said, because agencies can pay higher salaries and retain reliable employees.
As a private-pay client, Barbara Mullholand has succeeded in keeping her 84-year-old mother, who has dementia, in her familiar home surroundings.
“I’ve been lucky,” Mullholand said. “My mom is still able to get up and walk. Would an aide have time to do that in a nursing home, when it is so much quicker to put her in a wheelchair?”
Mullholand and her brothers want to return the devotion that their mother had always shown to them, never missing a sporting event or extracurricular activity. They take turns and stay overnight with her on alternating evenings. In the morning, when they leave for work, they are relieved by a home care provider from the Toledo-based Arista Home Care Solutions.
Friends have shared horror stories of aides who have arrived late or not shown up at all, but that hasn’t happened to Mullholand. On several occasions, Arista’s owners, Paula and Clayton Birney, have arrived to cover for an aide who was sick or running behind.
The home care industry lost an estimated 342,000 employees in 2020, according to the Bureau of Labor Statistics.
“Initially we saw a lot of fear of the virus,” Arista owner Paula Birney said. “We have tried to alleviate concerns with safety protocols, and at this point we are back to pre-COVID staffing levels. But we haven’t grown the way we would have expected in the last 18 months, and the need continues to grow as families try to avoid putting their loved ones into assisted living.”
Burnout is a growing concern for agencies that employ in-home caregivers.
“The demand on the existing workforce is higher, and it’s not as possible for people to take vacations and time off,” Russell said.
In-home caregivers deserve praise for their dedication, Wengerd said.
“Older caregivers realized they were more vulnerable, and some of them decided to stay at home,” she said. “But I am amazed at how many of our caregivers who kept going to work and told me, ‘I am going to stay with this family.’ People talk about doctors and nurses and what heroes they have been during the pandemic. The same is true for the people who go into homes every day to care not just for older people but for disabled people. They are heroes for sure.”