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The Facts About Caregiver Respite

We all know someone who is caring for a loved one. In the U.S., nearly 65 million caregivers are helping a family member, friend or neighbor who is ill, disabled or elderly or has special-needs. This is roughly one-third of the adult population.

While caring for a loved one can be rewarding and renew one’s sense of purpose, it can also take a toll, physically, mentally and emotionally. This in turn may undermine productivity at work and relationships at home. It is critical to both parties’ health that the caregiver takes regular breaks to preserve their well-being and capacity to care. Respite can provide that much-needed relief to help the caregiver rejuvenate and recharge.

What is Respite?

Respite is a temporary break from the responsibilities of caregiving that gives the regular caregiver some much-needed time off. Respite care has many facets, varying in several ways:

Providers: Family, friends, neighbors or volunteers from community or faith-based organizations, as well as professional caregivers from non-profit or for-profit organizations.
Time spans: Could range in hours, weeks or months, depending on the unique situation.
Cost: Help from family, friends, neighbors or volunteers may be free, while professional services will range in cost.
Services: Could range from companionship and housekeeping to non-medical and personal care to complex medical health care services.
Location: In-home or out-of-home in community-based partial day programs, assisted living or health care facilities.

Why is Respite Critical?

No matter what form respite takes, it is a necessity, not a luxury. Respite is critical to the health and well-being of both the caregiver and care recipient for multiple reasons:

Scope of responsibility: No matter how much love or dedication a caregiver feels toward the care recipient, the burden of long-term caregiving is too great for one person to successfully manage on their own.
Stamina: Caregiving requires sufficient time and energy. Respite helps a caregiver rest and restore their energy for the journey that lies ahead.
Caregiver health: Prolonged exposure to caregiver stress can create chronic physical and mental health problems. Respite provides much-needed relief from stress, enabling the caregiver to recover and build resilience to continue providing optimum care.
Burnout: Caregivers who are overwhelmed with stress will experience burnout, leaving them unfit and incapable of providing sufficient care.
Quality care: Neglect or abuse can arise as a result of caregiver burnout. Relieving caregiver stress prevents the erosion of quality care.
Placement: Respite helps prevent or eliminate the need for nursing-home placement. A strong and capable caregiver helps their loved one remain in their own home as long as safely possible.

Why Don’t Caregivers Take Respite?

As reasonable as respite may sound, a caregiver may not regularly take the time to enjoy the relief of respite. Why?

Unaware of caregiver role: With comments like, “It’s no big deal,” or “After all she has done for me, it’s the least I can do,” a caregiver diminishes the demands of the caregiver role, and thus neglects the need to manage their own stress and well-being.
Unaware of need: Many do not know the results of research. Prolonged caregiving takes a toll on physical, mental and emotional health. It can lead to significant chronic illnesses, interpersonal, occupational or financial problems.
Guilt: Compared to the care recipient's disabilities or difficulties, a caregiver may see their needs as less significant. Consequently, they shift focus from their needs to those of others.
Self-reliance: A caregiver may find it difficult to ask for, or worse yet, accept help from others.
Doubts & excuses: A caregiver has many concerns that negate the benefits of respite. They may think, “No one can care as well as I do. If something goes wrong while I am away it will be my fault,” or “It is not worth the effort to try to make all the arrangements for respite care; it’s easier to just do it myself.”

How is Respite Arranged?

Claim the right to care for yourself. The first and most important step is to guard respite time and the revitalization that flows from it. Postpone or delegate other demands that inhibit this essential time of self-renewal.
Assess the care recipient. Knowing the level of disability and necessary level of care helps determine what type of respite care to choose: Informal volunteer or paid professional? At home or in a care facility’s day or short-term stay program? Skilled care or companion services?
Ensure quality when selecting a respite provider. Whether volunteer or paid, don’t assume that an agency or individual caregivers are qualified. Don’t gamble with well-being or safety. Get to know prospective providers before engaging them in care. Put expectations and care responsibilities in writing so all parties are clear.
Ask the proper questions about an agency: be sure that they are licensed by the state, and that they have general liability and worker’s compensation insurance for their caregivers. Ask if they are a registry or an agency, and know the difference. Agencies, including Home Helpers, hire their own employees and conduct background checks; registries hire independent contractors who are directed to care for clients but are not employed by the registry. Understand their approaches to screening, training and supervision. Find out about how they prepare their caregivers to manage emergencies, their costs, range of services, and who to contact with questions.
Ask individual caregivers about their professional experience, including training, caregiving and respite care experience. Inquire about availability and interest in this job, back-up if they are unable to provide care when scheduled and why they left their last job. Verify they are insured and ask for references and a criminal background check.
Seek financial help if you need it. Costs vary for paid respite care. Several federal and state programs may help with fees. Long-term care insurance may cover some costs. The federal level National Family Caregiver Support Program (NFCSP) offers some funds for respite care. For eldercare respite, check with local Area Agencies on Aging to determine if you qualify for any financial assistance.

For More Information

There are many sources of information on respite and links to respite providers.

Easter Seals: www.easter-seals.org or toll-free phone: 1-800-221-6827. Services for children and adults with disabilities available at 400 U.S. locations
Eldercare Locator: www.eldercare.gov or toll-free phone: 1-800-677-1116. A U.S. government site that helps locate services offered by state and local Area Agencies on Aging (AAA)
Faith in Action: www.fiavolunteers.org or toll-free phone: 1-877-324-8411. Approximately 1,000 interfaith volunteer caregiving programs in the U.S. developed through a grant of The Robert Wood Johnson Foundation
Family Friends: www.family-friends.org or by phone: 1-202-479-6672. Matches volunteers 50 years and older with families of disabled or chronically ill children
National Adult Day Services Association: www.nadsa.org or by phone: 1-866-890-7357. Provides information to help find local adult day care centers
National Respite Coalition: www.archrespite.org/NRC.htm or by phone: 1-703-256-9578. Lists states with respite coalitions; expanding beyond their main focus on special needs children to include respite for adults
National Respite Locator Service:http://chtop.org/ARCH/National-Respite-Locator.html or by phone: 1-800-473-1727, ext. 222. Lists sites throughout the U.S. that provide respite; expanding beyond their main focus on special needs children to include adults
Shepherd's Centers of America: www.shepherdcenters.org or by toll-free phone: 1-800-547-7073. Provides a variety of visitor and respite services.
Home Helpers: www.HomeHelpersPhilly.com or toll-free phone: 1-877-464-9090. The Region’s premier provider of in-home companionship, personal care and homemaker services.

Jane Meier Hamilton, MSN, RN contributed to this article. Jane is a 35-year nursing veteran who has been a family caregiver for 20 years. In 2010, she authored Journey of a Lifetime, the Caregiver’s Guide to Self-Care. To learn more about Jane, please visit www.partnersonthepath.org.