Caregivers Called on to Play Greater Role

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Caregivers Called on to Play Greater Role

Rise in older population fuels growth

They are dietitians, physical therapists, home health aides, personal drivers and accountants all rolled into one.

They are family caregivers, and in the United States, millions of them provide unpaid care to adults and seniors. But the responsibilities that come with that role create physical, mental and financial burdens that lead to poor health for caregivers. As the U.S. senior population continues to grow, so does the need for public health practitioners and policymakers to address the barriers that family caregivers face.

More than 34 million Americans provided unpaid care to adults ages 50 and older in the past year, according to “Caregiving in the U.S.” a joint report of the National Alliance for Caregiving and AARP released in June 2015. The average age of a caregiver is 49 years old, and 60 percent are female, the report said. Nearly half of caregivers are helping a parent or parent-in-law.

While caring for their loved ones, family caregivers often neglect their own physical health. They skip preventive screenings such as annual mammograms, dental and prostate exams because they either lacked time or their loved one’s medical needs were given higher priority, said Gail Hunt, president and CEO of the National Alliance for Caregiving.

A 2010 study the alliance conducted with University of Pittsburgh researchers looked at health risk assessments of employees at a multinational corporation who responded to the question “Are you caring for an elderly relative?” and compared the caregivers to a population of non-caregiver employees. Caregivers reported more depression, stress-related physical issues and chronic diseases such as asthma and diabetes compared to non-caregivers.

Caregivers were more likely to have negative behaviors, such as smoking and drinking, Hunt said.

The costs of unpaid care in the U.S. are staggering. Unpaid care was estimated at about $470 billion in 2013, an increase from $450 billion in 2009, according to a July 2015 report from AARP. That unpaid care translates into financial burdens that are passed on to the family caregiver.

Associated costs come not only from tasks such as buying prescription medications, but purchasing food for a special diet or paying out-of-pocket for care that is not always fully covered by health insurance, such as dental, vision and hearing services, said Carolyn Mendez-Luck, Ph.D., an assistant professor of health management and policy at Oregon State University’s College of Public Health and Human Sciences and member of the American Public Health Association’s Aging and Public Health Section.

“Caregivers often pick up that bill to pay for these services their loved ones need,” Mendez-Luck said. “This in the long run puts them at financial risk, not to mention those younger caregivers that might be quitting jobs or reducing hours at their jobs to care for family members.”

Gaps in access to care and services can lead to or worsen burdens for family caregivers. The largest deficits in access to help for family caregivers are access to respite care—opportunities to have a break from the stresses of caregiving tasks—and finding resources that will educate them on how to properly manage care. Such resources can range from learning how to get someone in and out of a wheelchair to legal assistance for creating end-of-life care plans, said Donna Benton, Ph.D., research associate professor of gerontology at the University of Southern California Davis School of Gerontology.

Filling such holes is paramount, as the number of available family caregivers may be dwindling. The pool of potential family caregivers is expected to drop from seven per adult today to four per adult by 2030, according to the Centers for Disease Control and Prevention. Despite that, the number of U.S. seniors ages 65 and older is estimated to climb to 71 million by 2030.

“There’s a gap in having services that help with the emotional stress and strain—stress management programs, counseling for specific caregivers,” Benton said.

As the number of seniors who will need care grows, there are programs across the country that are working to help family caregivers.

Based on their populations of seniors age 70 and older, states and territories can receive grant funding to create interventions for caregivers under the National Family Caregiver Support Program.

Participating states and territories in the program, administered through the U.S. Department of Health and Human Services’ Administration for Community Living, must provide services under five categories: information to caregivers about available services; assistance to caregivers in gaining access to services; individual counseling, organization of support groups and caregiver training; respite care; and supplemental services on a limited basis.

The flexibility of the program, which launched in 2000, allows for innovation in creating needed caregiver services, said Greg Link, an aging services program specialist for the Administration for Community Living.

While it is up to states to determine the greatest needs, respite is the highest expenditure. Through the program, more than 67,000 caregivers received 6.2 million hours of respite care in 2014, Link said. Additionally, the program provided counseling and training for more than 125,000 caregivers in 2014 on a range of topics to help them in their role.

“Respite always is the service that is the most frequently requested,” Link said. “The caregivers also need a lot of information and that’s vitally important—where to find services, what programs are available, information about health conditions—what they have themselves and the health conditions of their loved ones.”

In the Los Angeles area, the University of Southern California Family Caregiver Support Center has been a resource since 1989 for adults to meet those exact needs and more for caregivers who need to address their loved one’s health and their own.

“We help caregivers self identify, because most people don’t call themselves caregivers,” said Benton, who is the center’s director. “They’re a husband, wife, sister or brother and they’re helping out a family member.”

The center conducts outreach at places such as hospitals, health fairs and physician offices to find caregivers and inform them of its services, which span areas such as respite, education, training, legal services and emotional support. Resources include workshops on the basics of caregiving, stress management classes and retreats for caregivers who need a break from the demands of their role. Between in-person and remote services, the center serves nearly 4,000 people a year.

Public health advocates realize change is needed in workplace policies to address caregivers’ responsibilities. Respect a Caregiver’s Time is a coalition of over 40 businesses representing nearly 1 million U.S. workers that focuses on research and best practices to keep caregivers in the workplace. Workplaces within the coalition have used strategies such as using technology to manage prescription refills for caregiver employees and using specially-adapted internet conferencing so caregivers can remotely join their loved ones’ doctor visits to reduce the amount of time away from work, said Drew Holzapfel, a convener of the coalition.

The organization is also a proponent of the use of flextime and telecommuting for caregivers. Businesses can expect a return of between $1.70 and $4.34 for every dollar invested in flextime, according to a joint report the coalition and AARP released in April.

“The key message can’t be, ‘Let’s just not hire caregivers,’” Holzapfel said. “They’re already in your workforce. You want them in your workforce—they are extremely valuable contributors. It’s critical that employers respond.”

Reprinted with permission from The Nation’s Health, APHA

Natalie McGill