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Respite care

Respite care is the provision of short-term, temporary relief to those who are caring for family members who might otherwise require permanent placement in a facility outside the home.

The term "short break" is used in some countries to describe respite care. The International Short-Break Association coordinates advocacy groups.

In the United States today there are approximately 50 million people who are caring at home for family members including elderly parents, and spouses and children with disabilities and/or chronic illnesses. Without this home-care, most of these cared for loved ones would require permanent placement in institutions or health care facilities at great cost to our society.

Even though many families take great joy in providing care to their loved ones so that they can remain at home, the physical, emotional and financial consequences for the family caregiver can be overwhelming without some support, such as respite. Respite provides the much needed temporary break from the often exhausting challenges faced by the family caregiver.

Respite is the service most often requested by family caregivers, yet it is in critically short supply, inaccessible, or unaffordable regardless of the age or disability of the individual needing assistance. While the focus has been on making sure families have the option of providing care at home, little attention has been paid to the needs of the family caregivers who make this possible.

Close to 80% of all long-term care is now provided at home by family caregivers to children and adults with serious conditions, including mental health issues, amyotrophic lateral sclerosis, multiple sclerosis, traumatic brain injury, cancer, paralysis, developmental and physical disabilities, cognitive impairments and Alzheimer's disease. Parents and family caregivers are the backbone of the long-term care system and save governments billions of dollars annually.

Research has shown that providing respite can have a positive effect on the health of the caregiver(see references below).

Without respite, not only can families suffer economically and emotionally, caregivers themselves may face serious health and social risks as a result of stress associated with continuous caregiving. Three fifths of family caregivers age 19-64 surveyed recently by the Commonwealth Fund reported fair or poor health, one or more chronic conditions, or a disability, compared with only one-third of non caregivers.

A Commonwealth Fund study of elderly spousal caregivers (aged 66-96) found that caregivers who experience caregiving-related stress have a 63% higher mortality rate than non-caregivers of the same age. Respite has been shown to help sustain family caregiver health and wellbeing, avoid or delay out-of-home placements, and reduce the likelihood of abuse and neglect. An outcome based evaluation pilot study show that respite may also reduce the likelihood of divorce and help sustain marriages.

Models for Respite

There are various models for providing respite care including:

In-home respite
Specialized facility
Emergency respite
Sitter-companion services
Therapeutic adult day care

In-home respite

In-home care is popular for obvious reasons. The temporary caregiver comes to the regular caregiver’s home, and gets to know the care receiver in his or her normal environment. The temporary caregiver learns the family routine, where medicines are stored, and the care receiver is not inconvenienced by transportation and strange environments. In this model, friends, relatives and paid professionals may be used. Depending on the state, Medicaid or Medicare may be used to help cover costs. Another in-home model will utilize friends and neighbors as helping hands where the primary caregiver never leaves the premises but may simply be getting a break so that they can cook dinner or pay the bills.

Specialized facility

Another model uses a specialized, local facility where the care receiver may stay for a few days or a few weeks. The advantage of this model is that the specialized facility will probably have better access to emergency facilities and professional assistance if needed.

Emergency respite

There may be the need for respite care on an emergency basis. When using "planned" emergency care, the caregiver has already identified a provider or facility to call in case there is an emergency. Many homecare agencies, adult day care, health centers, and residential care facilities provide emergency respite care.

Sitter-companion services

Sitter-companion services are sometimes provided by local civic groups, the faith community and other community organizations. A regular sitter-companion can provide friendly respite care for a few hours, once or twice a week. Care must be taken to assure that the sitter-companion is trained in what to do if an emergency occurs while the regular care-giver is out of the home.

Therapeutic adult day care

Therapeutic adult day care may provide respite care during business hours five days a week.

The Lifespan Respite Act

Recognizing this significant contribution and the needs faced by America’s caregivers, the United States Congress passed The Lifespan Respite Care Act of 2006 (HR 3248) which was signed into law in December 2006. The bill was introduced and championed in the US House of Representatives by Rep. Mike Ferguson (R-NJ) and James Langevin (D-RI). A companion bill in the Senate was cosponsored by Senator Hillary Clinton (D-NY) and Senator John Warner (R-VA).

Much of the success for the passage of this legislation is due to the work of The Lifespan Respite Task Force which includes a diverse group of national and state organizations, state respite and crisis care coalitions; health and community social services; disability, mental health, education, faith, family caregiving and support groups; groups from the child advocacy and the aging community; and abuse and neglect prevention groups.

If and when the new law is funded, (check progress at the ARCH website) it will provide funds for states to develop lifespan respite programs to help families access quality, affordable respite care. Lifespan respite programs are defined in the Act “as coordinated systems of accessible, community-based respite care services for family caregivers of children and adults with special needs.” Specifically, the law authorizes funds for:

Development of state and local lifespan respite programs
Planned or emergency respite care services
Training and recruitment of respite care workers and volunteers
Caregiver training

When the bill passed the House, Rep. Ferguson, whose own father was a caregiver for his ill mother for six years said , “Today's action by the House of Representatives represents not only an important victory for family caregivers nationwide, but it also sends America's caregivers a clear message: Your selfless sacrifice is appreciated, and help is on the way.”

The Lifespan Respite Care Act of 2006 is based on model state lifespan respite programs that have successfully addressed all of these barriers. Three states have enacted legislation to implement lifespan respite programs (Oregon, Nebraska, Wisconsin), which establish state and local infrastructures for developing, providing, coordinating and improving access to respite for all caregivers, regardless of age, disability or family situation. Oklahoma has also implemented a successful lifespan respite program. For more information on state programs, check the ARCH State News page.

Respite in the US

An estimated 50 million family caregivers nationwide provide at least $306 billion in uncompensated services — an amount comparable to Medicare spending in 2004 and more than twice what is spent nationwide on nursing homes and paid home care combined. Family caregivers may suffer from physical, emotional, and financial problems that impede their ability to give care now and support their own care needs in the future. Without attention to their needs, their ability to continue providing care may well be jeopardized.

Respite care is one of the services that Alzheimer’s caregivers say they need most. One study found that if respite care delays institutionalization of a person with Alzheimer’s disease by as little as a month, $1.12 billion is saved annually. A similar study in 1995 found that as respite use increased, the probability of nursing home placement decreased significantly

U.S. businesses also incur high costs in terms of decreased productivity by stressed working caregivers. A study by MetLife estimates the loss to U.S. employers to be between $17.1 and $33.6 billion per year. This includes replacement costs for employees who quit because of overwhelming caregiving responsibilities, absenteeism, and workday interruptions.

Caregiver wellness reduces hospitalizations, doctor visits, work absences

Significant percentages of family caregivers report physical or mental health problems due to caregiving. A recent survey of caregivers of children, adults and the disabled conducted by the National Family Caregivers Association, found that while 70% of the respondents reported finding an inner strength they didn’t know they had, 27% reported having more headaches, 24% reported stomach disorders, 41% more back pain, 51% more sleeplessness and 61% reported more depression.

Three fifths of family caregivers age 19-64 surveyed recently by the Commonwealth Fund reported fair or poor health, one or more chronic conditions, or a disability, compared with only one-third of non caregivers. Caregivers reported chronic conditions at nearly twice the rate of non caregivers (45% to 24%).

A JAMA study found that participants who were providing care for an elderly individual with a disability and experiencing caregiver strain had mortality risks that were 63% higher than non caregiving controls.

In an Iowa survey of parents of children with disabilities, a significant relationship was demonstrated between the severity of a child’s disability and their parents missing more work hours than other employees. They also found that the lack of available respite care appeared to interfere with parents accepting job opportunities.

Respite for Younger Family Members with Disabilities

Respite has been shown to improve family functioning, improve satisfaction with life, enhance the capacity to cope with stress, and improve attitudes toward the family member with a disability.

In a 1989 US national survey of families of a child with a disability, 74% reported that respite had made a significant difference in their ability to provide care at home; 35% of the respite users indicated that without respite services they would have considered out-of-home-placement for their family member.

There was a statistically significant reduction in somatic complaints by in a study of primary caregivers of children with chronic illnesses, and a decrease in the number of hospitalization days required by children, as a direct result of respite care.

Data from an ongoing research project of the Oklahoma State University on the effects of respite care found that the number of hospitalizations, as well as the number of medical care claims decreased as the number of respite care days increased.

A Massachusetts social services program designed to provide cost-effective family-centered respite care for children with complex medical needs found that for families participating for more than one year, the number of hospitalizations decreased by 75%, physician visits decreased by 64%, and antibiotics use decreased by 71%.

An evaluation of the Iowa Respite Child Care Project for families parenting a child with developmental disabilities found that when respite care is used by the families, there is a statistically significant decrease in foster care placement.

A study of Vermont’s 10-year-old respite care program for families with children or adolescents with serious emotional disturbance found that participating families experience fewer out-of home placements than nonusers and were more optimistic about their future capabilities to take care of their children.

Results When Caregivers of the Elderly Use Respite

Respite for the elderly with chronic disabilities in a study group resulted in fewer hospital admissions for acute medical care than for two other control groups who received no respite care

Sixty-four percent of caregivers of the elderly receiving 4 hours of respite per week, after one year, reported improved physical health. Seventy-eight percent improved their emotional health, and 50% cited improvement in the care recipient as well. Forty percent said they were less likely to institutionalize the care recipient because of respite.

Caregivers of relatives with dementia who use adult day care experience lower levels of caregiving related stress and better psychological well-being than a control group not using this service. These differences are found in both short-term (3 months) and long-term (12 months) users.

Respite Provided Across the Lifespan Yields Positive Outcomes

In a survey conducted by the Oklahoma Respite Resource Network, 88% of caregivers agreed that respite allowed their loved one to remain at home, 98% of caregivers stated that respite made them a better caregiver, 98% of caregivers said respite increased their ability to provide a less stressful environment, and 79.5% of caregivers said respite contributed to the stability of their marriage.

When newly formed, the Nebraska statewide lifespan respite program conducted a statewide survey of a broad array of caregivers who had been receiving respite services, and found that one in four families with children under 21 reported that they were less likely to place their child in out-of-home care once respite services were available. In addition, 79% of the respondents reported decreased stress and 58% reported decreased isolation.

Data from an outcome based evaluation pilot study show that respite may also reduce the likelihood of divorce and help sustain marriages

Prepared by Jill Kagan of the ARCH National Respite Coalition, Updated October 2006.