Respite care in the United States

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In the United States 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 would require permanent placement in institutions or health care facilities. [1]

Contents

Respite care

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. [1] 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. [2] A similar study in 1995 found that as respite use increased, the probability of nursing home placement decreased significantly [3]

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. [4]

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. [5]

Three fifths of family caregivers aged 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 1999 study in the Journal of the American Medical Association 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. [6]

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. [7]

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. [8]

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. [9]

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. [10]

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. [11]

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%. [12]

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. [13]

A 1999 study of Vermont’s then 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. [14]

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 [15]

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. [16]

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 were found in both short-term (3 months) and long-term (12 months) users. [17]

Respite provided across the lifespan yields positive outcomes

In a 2004 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. [18]

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. [19]

Data from an outcome based evaluation pilot study show that respite may also reduce the likelihood of divorce and help sustain marriages [20]

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 and James Langevin (D-RI). A companion bill in the Senate was cosponsored by Senator Hillary Clinton (D-NY) and Senator John Warner. [21]

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:

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.

See also

Related Research Articles

Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (WHO) describes palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain, illnesses including other problems whether physical, psychosocial, and spiritual". In the past, palliative care was a disease specific approach, but today the WHO takes a broader patient-centered approach that suggests that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness. This shift was important because if a disease-oriented approach is followed, the needs and preferences of the patient are not fully met and aspects of care, such as pain, quality of life, and social support, as well as spiritual and emotional needs, fail to be addressed. Rather, a patient-centered model prioritizes relief of suffering and tailors care to increase the quality of life for terminally ill patients.

<span class="mw-page-title-main">Elderly care</span> Care serving the needs of old people

Elderly care, or simply eldercare, serves the needs of old adults. It encompasses assisted living, adult daycare, long-term care, nursing homes, hospice care, and home care.

<span class="mw-page-title-main">Long-term care</span> Services for the elderly or those with chronic illness or disability

Long-term care (LTC) is a variety of services which help meet both the medical and non-medical needs of people with a chronic illness or disability who cannot care for themselves for long periods. Long-term care is focused on individualized and coordinated services that promote independence, maximize patients' quality of life, and meet patients' needs over a period of time.

Residential care refers to long-term care given to adults or children who stay in a residential setting rather than in their own home or family home.

Kinship care is a term used in the United States and Great Britain for the raising of children by grandparents, other extended family members, and unrelated adults with whom they have a close family-like relationship such as godparents and close family friends because biological parents are unable to do so for whatever reason. Legal custody of a child may or may not be involved, and the child may be related by blood, marriage, or adoption. This arrangement is also known as "kincare" or "relative care." Kinship placement may reduce the number of home placements children experience; allow children to maintain connections to communities, schools, and family members; and increase the likelihood of eventual reunification with birth parents. It is less costly to taxpayers than formal foster care and keeps many children out of the foster care system. "Grandfamily" is a recently coined term in the United States that refers to families engaged in kinship care.

<span class="mw-page-title-main">Adult daycare center</span>

An adult daycare center is typically a non-residential facility that supports the health, nutritional, social, and daily living needs of adults in a professionally staffed, group setting. These facilities provide adults with transitional care and short-term rehabilitation following hospital discharge. The majority of centers provide meals, meaningful activities, and general supervision. The care provided is often a social model or a medical model provided in order to improve participants health and guide their progress in the right direction. Demand for adult daycare centers is increasing with the need for assistance in old age or guidance to reintegrate into society after injury, illness or addiction, and accommodation to return to their former lives or improve upon their quality of life.

Respite care is planned or emergency temporary care provided to caregivers of a child or adult.

<span class="mw-page-title-main">Caregiver</span> Person helping another with activities of daily living

A caregiver, carer or support worker is a paid or unpaid person who helps an individual with activities of daily living. Caregivers who are members of a care recipient's family or social network, and who may have no specific professional training, are often described as informal caregivers. Caregivers most commonly assist with impairments related to old age, disability, a disease, or a mental disorder.

Carers' rights are rights of unpaid carers or caregivers to public recognition and assistance in preventing and alleviating problems arising from caring for relatives or friends with disabilities. The carers' rights movement draws attention to issues of low income, social exclusion, damage to mental and physical health identified by research into unpaid caregiving. In social policy and campaigning the movement distinguishes such people's situation from that of paid careworkers, who in most developed countries have the benefit of legal employment protection and rights at work. With an increasingly ageing population in all developed societies, the role of carer has been increasingly recognized as an important one, both functionally and economically. Many organizations which provide support for persons with disabilities have developed various forms of support for carers/caregivers as well.

As populations age, caring for people with dementia has become more common. Elderly caregiving may consist of formal care and informal care. Formal care involves the services of community and medical partners, while informal care involves the support of family, friends, and local communities. In most mild-to-medium cases of dementia, the caregiver is a spouse or an adult child. Over a period of time, more professional care in the form of nursing and other supportive care may be required medically, whether at home or in a long-term care facility. There is evidence to show that case management can improve care for individuals with dementia and the experience of their caregivers. Furthermore, case management may reduce overall costs and institutional care in the medium term. Millions of people living in the United States take care of a friend or family member with Alzheimer’s disease or a related dementia.

Family caregivers are "relatives, friends, or neighbors who provide assistance related to an underlying physical or mental disability for at-home care delivery and assist in the activities of daily living (ADLs) who are unpaid and have no formal training to provide those services."

A professional live-in caregiver provides personal care and assistance to individuals, including those suffering from chronic illness, Alzheimer's disease, and dementia, within the home setting. Typical duties of a live-in caregiver include meal planning and preparation, assistance with grooming, dressing and toileting, medication management, laundry and light housekeeping, and transportation/escorts to doctor's appointments or social engagements. Professional live-in caregivers are often provided by an outside agency, which may also coordinate their services with the client's preferred in-home health agency and other medical providers.

Caregiver syndrome or caregiver stress is a condition that strongly manifests exhaustion, anger, rage, or guilt resulting from unrelieved caring for a chronically ill patient. This condition is not listed in the United States' Diagnostic and Statistical Manual of Mental Disorders, although the term is often used by many healthcare professionals in that country. The equivalent used in many other countries, the ICD-11, does include the condition.

The Pennsylvania Department of Aging is a cabinet-level agency charged with providing aid to Pennsylvania's approximately three million individuals age 60 and older. Although the bureau operates some services directly, such as the Pharmaceutical Contact for the Elderly (PACE) prescription drug program, it generally serves as a clearinghouse of funding and information for county-level Area Agencies on Aging. The department was formed under the governorship of Milton Shapp.

An informal or primary caregiver is an individual in a cancer patient's life that provides unpaid assistance and cancer-related care. Caregiving is defined as the processing of assiting someone who can't care for themselves, which includes physical, mental, emotional, social, and spiritual needs. Due to the typically late onset of cancer, caregivers are often the spouses and/or children of patients, but may also be parents, other family members, or close friends. Taking care of family members at home is a complicated experience. The relationships involved constantly shift and change, in expected and unexpected ways. The expected or expected changes can negatively affect physical health, emotions, social life, and spiritual well-being of the caregiver. Informal caregivers are a major form of support for the cancer patient because they provide most care outside of the hospital environment. This support includes:

Chronic disease in Northern Ontario is a population health problem. The population in Northern Ontario experiences worse outcomes on a number of important health indicators, including higher rates of chronic disease compared to the population in the rest of Ontario.

Family support is the support of families with a member with a disability, which may include a child, an adult, or even the parent in the family. In the United States, family support includes "unpaid" or "informal" support by neighbors, families, and friends, "paid services" through specialist agencies providing an array of services termed "family support services", school or parent services for special needs such as respite care, specialized child care or peer companions, or cash subsidies, tax deductions or other financial subsidies. Family support has been extended to different population groups in the US and worldwide. Family support services are currently a "community services and funding" stream in New York and the US which has had variable "application" based on disability groups, administrating agencies, and even, regulatory and legislative intent.

Children with Special Healthcare Needs (CSHCN) are defined by the Maternal and Child Health Bureau as:

Caregiving by country is the regional variation of caregiving practices as distinguished among countries.

Caregiver burden is the stress which is perceived by caregivers due to the home care situation. The subjective burden is considered to be one of the most important predictors of negative outcomes from the home care situation.

References

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  21. HR3248