So she turned to family, advocates and nonprofit groups to help her understand the unpredictable disease. Living together in Pickerington, she and her mother share caregiving responsibilities such as organizing medicines, preparing meals and scheduling appointments.
Her dad is still independent and the workload is manageable, she said. But she knows many caregivers across the United States are feeling overwhelmed, struggling to balance careers, finances, families and their own health.
“You go into it blind, without guidance,” said Schultz, who is now 28.
But some relief might be on the way. Schultz and unpaid caregivers nationwide are celebrating a legislative victory in Washington, D.C., that aims to help caregivers adjust to their roles and prevent burnout.
On Monday, President Donald Trump signed the RAISE Family Caregivers Act. The acronym stands for “Recognize, Assist, Include, Support and Engage.”
The new federal law directs the Department of Health and Human Services to develop a national strategy to recognize and support family caregiving within 18 months and update it every two years. The department also will create an advisory council to explore ways to better support caregivers.
“It’s a big step for families dealing with any type of disease, not just Alzheimer’s,” Schultz said. “As more and more people are aging, this is becoming a reality for a lot of people.”
Senior advocates in Ohio say it’s still too early to know how, exactly, the bill will affect local caregivers, but there is no shortage of issues to address.
They said the moves that could have the biggest impact on caregivers include offering financial reimbursements, such as tax cuts or stipends; mandatory flexible leave policies for working caregivers; incentives for medical professionals to specialize in geriatrics; and providing better support and more funding for support programs.
Better access to respite care, which offers relief to caregivers by providing temporary care for their loved ones, also should be a priority, said Patty Callahan, a caregiver advocate with the Central Ohio Area Agency on Aging.
“It’s time for this, that’s for sure; it’s past time,” she said of the bill.
Nearly 1.5 million Ohioans care for their parents, spouses, partners and other adult loved ones. They provide 1.3 billion hours of unpaid care a year in Ohio, worth an estimated $16.5 billion, according to AARP Ohio.
As the state’s population rapidly ages, its total number of family caregivers is expected to double to 3 million.
Most people, such as Schultz, will take on the responsibility willingly, simultaneously helping their loved ones stay independent at home and saving the government and health care systems billions of dollars, advocates say.
But the tasks can sometimes be expensive and exhausting, especially if caregiving interferes with a person’s paid job or requires major overhauls, like modifying a home for a person with a disability.
“If we don’t address this, it’s going to put a serious strain on the system,” said Luke Russell, AARP Ohio’s manager of advocacy and communications.
A total of 113 elected officials cosponsored the RAISE Act, including two Ohioans: Rep. Steve Stivers, an Upper Arlington Republican, and Rep. James B. Renacci, a Republican from Wadsworth in northeast Ohio.
The widespread support is encouraging but not surprising, said Caitlin Purk, the local Alzheimer’s Association’s advocacy coordinator.
She expects the bill to follow a path similar to the bipartisan National Alzheimer’s Project Act signed by former President Barack Obama in 2011, which resulted in a national plan a year later to address the disease.
“If you’re not personally a caregiver, you know someone who is one,” Purk said. “It doesn’t matter if you’re a Republican or a Democrat, Alzheimer’s doesn’t discriminate against anyone. Caregiving is definitely along those same lines.”