“You have got your own space.”
“A weight is lifted off my shoulder.”
“It’s lovely just being independent for once.”
These quotes show the importance of respite care to family caregivers of older adults (Ashworth and Baker, 2000).
Respite care provides a short break for family caregivers—anywhere from a few hours to several days or weeks. Respite can be provided in the home or elsewhere, by family, friends, or paid help. Companion services, home health agencies, adult day care, camps, hospitals, or long term care organizations may offer respite services.
“Caregiving is physically and emotionally demanding,” says Barb Bowers, PhD, RN, FAAN, University of Wisconsin–Madison School of Nursing professor. “Those who are providing care often don’t realize how much they need a break. Accepting respite care helps them keep providing care for longer.”
Yet only 15 percent of family caregivers have used respite care, according to the Caregiving in the U.S. 2015 report.
Lisa Schneider is familiar with many reasons why stressed families may not use respite services.
“People either don’t know about respite or don’t understand how it can benefit them,” says Schneider, the Executive Director of the Respite Care Association of Wisconsin (RCAW). “They may not trust anyone else to care for their loved one, or feel guilty because they think providing care is all their responsibility.”
RCAW’s mission is to promote, support, and expand quality respite care, across the lifespan and statewide. The organization recruits and trains respite care providers, does outreach to family caregivers, and provides grants to families who don’t qualify for other supports.
“Typically, by the time someone seeks respite, they are burned out,” says Schneider. “Our goal is to reach family caregivers before they reach burnout stage.”
Early and regular use of respite allows family caregivers to keep up with their friends, hobbies, exercise, and other self-care activities. Caregivers who wait to use respite until they’re almost burned out don’t benefit as much.
Planning helps family caregivers get the most out of respite services. Caregivers who set goals for their free time, prioritizing what they enjoy doing, miss doing, need to do, or activities that reduce their stress feel more satisfied with respite and with their caregiving experience overall.
UW–Madison School of Nursing Assistant Professor Kim Whitmore, PhD, RN, CPN studies how families of children with special healthcare needs use respite services.
“Nurses and other healthcare providers need to ask parents and other caregivers how often they are getting a break,” says Whitmore. “We need to promote the benefits of respite care. We can think about respite care like medication and remember the ‘five rights.’ We need to give the ‘right family’ the ‘right type of respite care’ at the ‘right time’ in the ‘right amount’ delivered by the ‘right route,’ whether that be at home, activity based or residential.”
Whitmore’s new project is the Building Respite Evidence and Knowledge (BREAK) Exchange.
“We developed the BREAK Exchange to connect respite care researchers and respite care programs around the globe, to build collaborations and engage in high-quality research,” says Whitmore. “It will be a forum for sharing best practices.”
More respite care providers are needed, to provide quality services to stressed families.
“We have a major respite care workforce shortage in Wisconsin,” says RCAW’s Lisa Schneider. “Expanding the pool of quality, trained respite care workers is a growing focus for us.”
RCAW offers online training, resources, and a registry for respite care workers and providers. They’ve joined with the Center for Aging Research and Education to organize workshops for family caregivers and respite care providers across the state. Workshops will be held this summer and fall, in La Crosse, Appleton, Dodgeville, Menomonie, Antigo, River Falls, Madison, and Fond du Lac.
“We are always looking for opportunities to collaborate with others, for the benefit of family caregivers and respite care workers,” says Schneider.