Helping Caregivers Care for Themselves
November 24, 2015 | Home and Family
By Lisa Wirthman
One of the greatest challenges for the nation’s 65 million family caregivers is finding ways to take care of themselves. Family caregivers provide 80 percent of the nation’s long-term care. Informal caregiving for elderly people alone is valued at about $522 billion a year, according to a RAND Corporation study.
Despite the value of informal caregiving, however, 85 percent of caregivers don’t use any type of respite services to support themselves in their caregiving roles, according to a recent report from the AARP and the National Alliance for Caregiving (NAC). Part of the problem is a maze of resources for respite care and funding that varies from state to state and can be difficult to navigate.
The purpose of respite care is to create some breathing room for family caregivers, who are often also working and juggling other duties. Many of the 47 percent of adults in the so-called sandwich generation, who have a parent age 65 or older and a dependent child, also provide care for multiple family members.
Whether it’s a chance to see a movie, pay a few bills or visit their own doctors, respite gives caregivers opportunities to prioritize their own needs.
“For us, it’s very simple,” said Jill Kagan, director of the National Respite Network and Resource Center. “It’s all about providing the caregivers some relief from their ongoing responsibilities.”
Respite care can take many forms. It can be a formal arrangement with a licensed care provider or informal help from family or friends. It can take place in-home or out-of-home, and it can be an occasional or regularly scheduled break.
Caregivers Need Care, Too
The needs of family caregivers can change over time, but the consequences of not receiving help are consistent. Family caregivers are at risk for high levels of stress, depression, health problems and financial strain, according to the Family Caregiver Alliance.
Deborah Ward cares for her husband, who was injured in an accident. She’s one of the many caregivers who have shared their stories with the alliance.
“As a caregiver, I have experienced exhaustion, loss, guilt, resentment, frustration and grief, but I am finding a new equilibrium in the daily routines,” she said. “I am grateful for help with an occasional meal, help with cleaning, driving to therapies, gifts of massage and invitations for an evening out.”
Although respite is designed to meet the varied needs of caregivers, eligibility for government funding is often determined by the condition of the person who receives the care (including what type of care it is and how often it’s received) rather than how badly the caregiver needs a break. That’s changing with the realization that family caregivers need to be cared for, too.
“We have to look at respite as really a service for the family caregiver,” Kagan said.
How Do States Help?
States are inconsistent in their approaches to respite care. The first state Lifespan Respite Program was established in Oregon in 1997 as a coalition of community-based respite services and funding streams for those who need assistance. A handful of other states followed suit.
In 2006, Congress passed the Lifespan Respite Care Program, which was minimally funded in 2009. The federal program awards competitive grants of up to $200,000 to eligible states that want to start or expand similar coalitions of respite care resources. Although the program’s authorization officially expired in 2011, so far Congress continues to fund it with bipartisan support.
Despite minimal funding, many of the 33 states and the District of Columbia that have received federal grants are working passionately to create statewide coalitions of respite services that span all ages and disabilities, Kagan said.
Some states use their grants to develop statewide databases of respite providers or to help families pay for respite care. Other states focus on recruiting and training respite care providers in locations where help is scarce, even for families that can readily afford it.
Many state coalitions are also working to engage employers in providing respite services in order to retain employees who are also family caregivers. A 2011 Gallup study found that lost productivity from caregivers costs the economy about $25 billion each year.
Asking for Help
One of the biggest challenges may be simply engaging the actual caregivers who aren’t identifying themselves as such, said Kagan, perhaps because they’re not full-time or professional care providers. To encourage more informal caregivers to seek respite care, there needs to be an increased awareness that services are available—and that it’s OK to ask for them, said Kagan.
“Our first motto was that asking for help is a sign of strength,” she said.
Caregivers also need to think about what they want to do with their respite time, so they can seek appropriate resources. Most important, they need to start looking for respite services as soon as they become caregivers rather than waiting until there is a crisis, Kagan advised.
The National Respite Network offers a consumer guide on its website called the ABCs of Respite to help caregivers learn how to ask for help. Respite is the theme of National Family Caregivers Month, this month, which may further increase awareness of the importance of caring for caregivers and giving them the break they deserve.
Lisa Wirthman writes about business, sustainability, public policy and women’s issues. Her work has been published in The Atlantic, USA Today, U.S. News & World Report, Fast Company, Investor’s Business Daily, the Denver Post and the Denver Business Journal.
Originally published on Northwestern MutualVoice on Forbes.com.