Respite Care - The Gift of Time
ARCH National Respite Network and Resource Center


A desire to have family members close to home and limited funding for residential services has resulted in many families caring for a loved one who is injured or ill at home. Being “on call” 24 hours a day can be stressful. Families may ignore their personal needs or neglect other family members. Respite care can reduce stress, support family stability, and revitalize family members.

Respite care is temporary care. It provides short-term relief for families and caregivers. It can be for a few hours or a few months depending on the needs of the caregiver and available resources. Respite care allows caregivers time to take a vacation or to spend a few hours with friends and family without caregiver responsibilities.

Caring for an individual with an acquired brain injury is often a long-term commitment. The residual effects of injury require specialized care. Family members suspend their jobs, personal relationships, and social commitments to provide a safe, normal routine and the specialized care their loved one needs.

This can be taxing at any time of year. During the holidays, busy schedules (shopping, traveling, preparing for visitors) makes care giving even more challenging. Add to this, the difficulties an individual with an acquired brain injury may experience because of changes in routine, and the stage is set for stress for all involved. Respite care may be an answer.

Benefits from respite care services
Family members may not recognize the need for respite care services or may be reluctant to use these services, feeling that providing care to their loved one is solely their responsibility. It is important for caregivers to realize that respite care was developed because caregivers, just like them, saw the importance of taking temporary breaks from care giving responsibilities. A short break may help families avoid fatigue and burnout and can help them return to care giving responsibilities with renewed energy. In addition, respite care is not only for caregivers. It also provides a break for the person who is receiving care. Respite care may provide him/her with an opportunity to develop new relationships, expand skills, and function with greater independence.

S. L. Folden and S. Coffman reviewed several research studies that focused on the benefits of respite care in their article: “Respite Care for Families of Children with Disabilities,” Journal of Pediatric Health Care, 1993. They reported one study found that “families using respite reported increased satisfaction with life, more hope for the future, improved attitudes toward their child with a disability, and increased ability to cope. Most user families (94%) recommended respite services to other families.” Another study noted that families experienced “better family functioning and reduced stress levels after the use of services.”

In another study, persons who used respite care reported that respite care programs helped them avoid institutionalizing a family member, helped relieve family stress, and allowed them to do things that were not possible prior to respite care services. They also indicated that they related better to their family member and that their family got along better after receiving respite care services.

What services are provided?
The type of service a person receives depends on the needs of the person who is injured or ill, available funds, and availability of programs. Some respite programs send a caregiver to a family’s home. Other programs require that the individual come to a facility. As noted, services may be provided for a few hours a day or for several weeks at a time. Services usually include supervision, assistance with activities of daily living, and social or recreational activities.

How are respite care services obtained?
There is no established network of respite care services for individuals with acquired brain injury.

Local organizations such as churches, schools, and other groups that offer respite care for elderly or persons with other disabilities may not be able to meet the needs of persons with acquired brain injuries. To identify organizations that offer respite care for persons with brain injuries, contact local hospitals or rehabilitation programs.

The Brain Injury Association also may be able to provide direction. Talk to members of other families who are providing home care to loved ones. Ask if they have found any helpful resources. Consider developing a “host family program” with other families. Respite services are provided to a family member in return for offering the same service to another family.

How are respite care services funded?
Funding will vary, based on an individual’s needs, medical claims, and insurance.

Here is a short glossary of for terms used in our article:

Advocacy - families, caregivers, professionals and volunteers, either individually or in groups, working in favor of the interests and rights of others, such as persons with disabilities

Day program- nonresidential services

Emergency respite care plan - a preappointed plan of action. Every family/caregiver should have an emergency plan posted in a visible area.

Home Health Agencies - offer services for managing home recovery. May include the services of skilled nurses under the direction of a physician, therapists, home health aids, and medical social services

In home respite care - temporary, time limited care provided in the home setting

Intermittent care - assistance and supervision provided on an as-needed basis for specific activities

Residential respite care - residential rehabilitation offered on a PRN basis. Services are dictated by need of the consumer and provided in increments of hours, days, weeks, etc.

Respite care - temporary, time limited care designed to relieve ongoing responsibilities of a primary family member or other caregiver

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