Respite Care

ADULT Karen A. Roberto

CHILD Stephen R. Block, April W. Block

Users of Respite Care

Respite programs typically provide care for older adults with a wide range of physical and mental disabilities. Based on the small number of published reports that include data on client and family characteristics (Montgomery 1992), typical respite care users in the United States are around eighty years of age. Approximately 60 percent of the programs' participants are female who tend to be older than their male counterparts. More than 85 percent of the older adults live with their family caregivers, who are either spouses or adult children. Most older respite users have multiple impairments that limit their ability to perform routine daily activities such as bathing, eating, and dressing.

Types of Respite Programs

Various agencies operate respite programs, including both for-profit and nonprofit organizations. Programs differ with respect to their definitions of respite, target populations (e.g., persons with Alzheimer's disease; persons with developmental disabilities), eligibility criteria, and the amount and type of respite offered. Costs for respite services vary, depending on the type and intensity of care provided to participants. Most programs rely on contributions from participants, who pay a preset amount or on a sliding scale according to their financial resources. Many communities in the United States and abroad support agencies that help caregivers find respite care services for their family members. For example, Carer Respite Centres, located in fifty-eight regions across Australia, specialize in helping caregivers find and use respite services in their local area (Quality Care for Older Australians 2001).

In-home care. In-home respite care takes place in the home in which the older person lives. Depending on the needs of the caregiver, in-home respite can occur on a regular or occasional basis and can take place during the day or evening hours. Some programs provide personal and instrumental care for the older person, whereas others provide only companionship or supervisory services (Lawton, Brody, and Saperstein 1991). Professionals and paraprofessionals, employed by community-based agencies that offer respite services (e.g., home health agencies, senior support programs, and church-affiliated organizations), typically provide the care. Several communities have developed programs that rely on trained volunteers to provide in-home respite care. For example, the Visiting Nurse Association of America created a partnership with older adults in Senior Companion Programs in eighteen cities across the United States. The Senior Companion Program trains volunteers to assist older clients and their families by developing a relationship with dependent elders and, in the process, providing family caregivers much-needed respite (Fischer and Schaffer 1993).

Older adults who receive in-home care typically exhibit more frequent social and behavioral problems than do participants of other types of respite programs (Lawton et al. 1991). Their care-givers report a higher degree of burden and provide more intense care compared with caregivers using other types of respite. Caregivers using in-home respite services also spend fewer hours per day away from their care receivers than those using other types of respite services (Berry, Zarit, and Rabatin 1991).

In-home respite is the type of respite most acceptable to family caregivers (Conlin, Caranasos, and Davidson 1992; Lawton et al. 1991). It typically is more flexible than other forms of respite because it most easily accommodates to the specific day and time that the caregiver wants. Caregivers also view in-home respite as more acceptable than other types of programs because they do not have to take their care recipients out of the environment in which they are most comfortable. It also has its limitations because in-home respite services can be expensive, particularly if frequently used for several hours per day. Families also may be reluctant to use in-home respite services because they do not like having strangers in their homes or taking care of their loved ones.

Adult day care. Adult day care is a structured, community-based comprehensive program that provides a variety of health, social, and related support services in a protective setting during any part of a day, but less than twenty-four–hour care (National Council on the Aging 2001). These programs typically offer some combination of health and therapeutic services for participants while meeting their socialization needs through the provision of individual and group activities, and shared meals. Ninety percent of centers operate on a nonprofit or public basis. Regardless of the host agency, most centers are small, averaging twenty participants per day.

Most adult day care programs serve populations mixed in age and impairment. Findings from a nationwide study reported by the National Institute on Adult Day Care suggest that typical adult day care participants are women, in their midseventies, white, and living with a spouse, adult child, or other family and friends. Approximately 50 percent of adult day care participants need help with at least two activities of daily living and/or suffer cognitive limitations. The characteristics of caregivers who rely on adult day care services are more variable. For example, a comparative study of 118 female caregivers of persons with Alzheimer's disease found that caregivers of users of adult day care were younger, had higher education and income levels, were more likely to have children living in the household, and reported more symptoms of stress and depression than those caregivers who did not use this type of respite service (Guttman 1991). The forty-two care-givers who used a dementia-specific day program in New York, however, were more likely to be older, spousal caregivers, most of who have served as the primary caregiver for less than two years (Monaham 1993).

An advantage of day care over in-home respite care is that it provides important peer group support and greater opportunities for social interaction for the older adult. For the caregiver, adult day care offers freedom from caregiving responsibilities for potentially long, continuous blocks of time at a lesser cost than in-home services (Lawton et al. 1991). A disadvantage of using adult day care is the physical and emotional effort required to prepare care receivers to attend a day program. For example, transportation to and from the center is a major issue that caregivers and programs must resolve. Caregivers often view getting the family member ready to leave home more consuming and exhausting than providing the usual care. In addition, many caregivers and their care receivers have an adverse emotional reaction to the term day care, which they perceive is a program for children, not an appropriate setting for older adults (Bane 1992).

Residential respite care. Residential settings such as nursing homes and hospitals also provide respite services. In most situations, caregivers pay out-of-pocket for residential respite care. This type of respite care differs from in-home and adult day programs in that it provides overnight and/or extended services. Beds may be available for both emergency respite care (e.g., illness of a caregiver) and planned respite stays, such as when a caregiver plans a vacation or a short weekend of relaxation (Lawton et al. 1991).

Nursing homes indicate that almost 80 percent of their respite clients have functional impairments that would make them eligible for permanent residential care (Montgomery 1992). Caregivers of elders using residential respite services typically are older and spend more time in the caregiver role than caregivers using other types of programs. Perhaps, because these care receivers are at a point of requiring intense care and supervision, caregivers often use this type of respite service on a trial basis before permanent nursing home placement (Miller and Goldman 1989; Scharlach and Frenzel 1986).

Residential respite programs have their advantages and disadvantages with respect to cost, caregivers' perceptions of care and the facility's ability to provide care, and the additional burden of preparation required of the caregiver (Gonyea 1988; Rosenheimer and Francis 1992). Although Adult day care offers support services in a protective setting during any part of a day, but less than 24-hour care. It provides peer group support and opportunities for social interaction. MEDIAFOCUS residential programs offer respite care at costs comparable to similar amounts of in-home respite, caregivers still view it as a costly care alternative. Nursing homes and hospitals usually provide a supervised, professional setting equipped to handle emergencies, which may alleviate the family's anxiety about care. Caregivers, however, often try so hard to avoid nursing home placement that even a temporary placement evokes fear and guilt about future placement possibilities. In addition, although institutions typically can accept older individuals with a range of behavioral problems and functional disabilities, caregivers often fear that their elders will not receive proper individual attention and care. The preparation required for a nursing home or hospital stay (e.g., filling out forms, preparing personal effects, explaining the situation to the care receiver, and transportation to and from the facility) and limitations on the number of days a person can stay in the program also discourage some caregivers from using this type of respite care.

Caregiver Outcomes and Respite Care Challenges

As a result of using respite services, family caregivers report enhanced levels of well-being, reduced feelings of burden and stress, and delayed placement of their loved one in a nursing home (Cox 1997; Kosloski and Montgomery 1995). In addition, most caregivers who use respite services report being highly satisfied with the program and the care their family member receives (Buelow and Conrad 1992; Henry and Capitman 1995; Jarrott et al. 1999).

Despite the potential for positive outcomes, and the growing availability of respite programs across the United States and internationally, caregivers are still reluctant to use any type of respite service. When caregivers do seek respite services, it is often at a time of crisis; their family situation escalates to a point at which they cannot continue providing care without some assistance. Family caregivers often view respite programs as a "last resort" or "end of the road" solution, rather than a preventive service. Respite services are more effective in alleviating the stress and strains of caregiving if providers can get caregivers to enroll in their programs earlier in the caregiving career.

To enhance program use by family caregivers, respite care programs must address both family-related and program-related issues. Family-related issues include caregivers' lack of awareness, apprehension, and attitudes about using respite services and the reactions of their care receivers (Schmall and Webb 1994). Many caregiving families have little or no contact with formal services; thus, they are often unaware of the availability of respite care in their communities. Even when caregivers are aware of such services, their fierce independence and personal beliefs about caregiving may hinder their use. It is common to hear caregivers say such things as "She's my mother, I am responsible for her care" or "No one can care for my husband better than I can." Family caregivers often feel guilty about leaving their care receivers and believe that using respite services is a sign of failure. They may be even more reluctant to use respite services if they see it as benefiting themselves, rather than their care receivers. In addition, some care receivers respond negatively to and resist respite care, thus reinforcing feelings of guilt often harbored by many caregivers.

Programmatic challenges related to the use of respite care services include lack of service availability when caregivers want or need them most and lack of control over who provides services (Malone-Beach, Zarit, and Shore 1992). For in-home respite users, having different workers every time they request help is a deterrent to the use of such services. Caregivers generally want to have more control over which respite care workers provide care for their family members. The limited availability (e.g., only weekdays) and time schedules (e.g., 8:00 A.M. to 5:00 P.M.) of many adult day care programs prohibit their use by some caregivers, particularly those who are working outside the home. Transportation is another major barrier to the use of respite services, particularly for adult day care. Many family caregivers find it difficult to get their care receivers to a center, and many centers have limited means of providing transportation for their participants. Finally, the lack of or limited government and private sources of insurance for respite care, especially for programs in the United States, also is perceived as a barrier for many families who may otherwise wish to use respite services.

Respite Services throughout the World

Respite service is not just a U.S. phenomenon. The need for respite care knows no boundaries among families with children with developmental delays, disabilities, or serious illnesses. For instance, Johannes Schadler (1991) described the need for respite care services in the Federal Republic of Germany and efforts to develop a national organization called Lebenshilfe. Similarly, survey research conducted in North Wales reported that families caring for people with mental retardation expressed their greatest need as respite care services (Grant and McGrath 1990). Although there might be less publicized recognition of the need and benefits of respite care, the service is available in several countries that are visibly sensitive to providing services and supports to children with disabilities and their families. It is not altogether surprising that these countries include Canada, England, Ireland, Scotland, Wales, Australia, and New Zealand. Historically, professionals in these countries have tended to promote more inclusive or mainstream services for people with disabilities.

It is important to recognize that cultural diversity influences the variations of interaction among families from different parts of the world (Lynch and Hanson 1998). How a family responds to stress and the demands of caring for a child with exceptional demands may differ dramatically from culture to culture. The results of one study suggest that parents with more difficult children need and use respite care more than others. Nonusers of respite care reported a higher perception of social support than users of the service (Factor 1990). This finding suggests two additional points for consideration. First, comparing respite needs among inhabitants of different countries or cultural groups within a country requires an understanding of the group's mores and customs. Some groups may feel more comfortable in openly asking for help, whereas others may use more subtle signals to ask for help. Second, as discovered in one Australian study, the restricted use of respite services among members of different ethnic communities may simply be a function of individuals not knowing that these services exist (Evert 1996).

State and local governments' abilities to support respite services have been inconsistent throughout the United States. In some states, state-funded services for people with mental retardation and other developmental disabilities have funds set aside for respite services. Some states have funded Family Resource Centers to support the respite care needs of families in specific neighborhoods or communities. Similar funded services are also available in other countries. Throughout Australia, for example, the Commonwealth Department of Family and Community Services provides a Special Needs Subsidy Scheme (SNSS) to support respite services and other childcare supports.

According to the U.S.-based National Respite Coalition, four states have adopted public policy provisions in order to create state or local infrastructures necessary for respite programs. Oregon, Nebraska, and Wisconsin developed services through the passage of Lifespan Respite Acts. Lifespan Respite is a network of community-based programs that provide scheduled or emergency-based respite care. By giving statutory authority to Lifespan services, a state is committing to fund respite services. Legislation is not the only route that can be used to develop a network of respite care programs. In Oklahoma, for example, a consortium of public and private organizations formed a coalition to provide a statewide information and referral service that can help Oklahomans with special needs find community resources.

In the early 1980s, many state-government agencies throughout the United States that were responsible for services to persons with developmental disabilities and mental retardation took an interest in Family Support Programs and launched these individualized services. Family Support services had greater flexibility than most traditional government-funded programs. This service could provide families with vouchers, direct subsidies, or reimbursements for expenditures on services or special equipment. The purpose of these programs was to keep a family intact and support the family who wanted to raise their child at home as an alternative to institutional care. One of the main provisions of Family Support was payment for respite care (Brown, Thurman, and Pearl 1993).

Types of Respite Care

Respite care services are provided in many countries. Over the years, in response to the varying needs of families, four models of respite care have been popularized throughout the world.

In-home care. In-home respite care is provided in the home of the child. In this format of respite care, the provider watches the child while the family members take a break to attend to other family or business interests. The family caregivers are given an opportunity to either relax, leave the house to run errands, or in some situations take a few days off as a brief vacation.

Host family care. Host family respite care is a service delivered in the home of another family. The respite services are provided in the same fashion and offer the same benefits as in-home respite care. In this format, however, the child is not in his/her familiar home environment. Some individuals believe that this model helps the development of the child through the opportunity to socialize. Others think that placing a child in an unfamiliar environment is unkind and may cause or exacerbate behavior issues. However, host family respite services should not automatically imply that the provider family is unknown to the child. The host family may be a close neighbor or relative.

Center care. Center care respite services are also provided in a setting outside of the child's home. The respite setting might be a medical clinic, school, a nonprofit (nongovernmental organization), or commercial day care setting. Generally, this form of respite service is not as individualized as the other two respite models. The center may be designed to take care of a number of children. Consequently, its staff may not be able to readily attend to the personal needs of each child. The availability of center care respite services may increase as an option for families in the United States as a result of the Americans with Disabilities Act (ADA) which requires childcare centers to make reasonable modifications in their policies in order to serve children with disabilities. Some centerbased providers are equipped to provide respite care on an emergency or as-needed basis.

Cooperative care. Cooperative respite care is a service shared among several families. In this arrangement, families may take turns providing respite care for each other. Families who participate in this format of respite care believe there is an advantage of having another family provide the respite services (especially one that has first-hand experience in raising a child with a disability or serious illness). Parents believe that their children will receive better care through a cooperative since the families involved all have an appreciation for respite services. On the other hand, some think that this format may provide more opportunities for childcare errors and accidents. The concern is that the respite provider may experience unusual tension stemming from the number of details that they must manage in order to care for one or more children with special needs. This is, of course, in addition to providing direct care for one's own child with special needs.

The Effects of Respite Care

The opportunity to be relieved from the extraordinary tensions brought on by providing extra care for another person may have several social and societal benefits. Adverse side effects may be experienced by families who have children with special needs, but do not have adequate support such as the availability of respite care. These families face a significantly higher rate of divorce than families whose children do not have special needs (Hodapp and Krasner 1995). Consequently, the absence of support and the trigger of stress may lead to physical and/or verbal abuse (Epps and Jackson 2000). As a result of an abusive environment, families in these circumstances are likely to have sons or daughters in need of out of home placements, including costly tax-supported foster care placements or inhospitable institutional settings. Relief from the constant pressure of caregiving not only may protect the vulnerable child, but it also may prevent domestic violence against a spouse or other household members.

Respite services may also prevent other maladies to which primary family caregivers are prone. According to the National Family Caregivers Association, caregivers in need of supports experience more headaches, stomach disorders, sleeplessness, and depression. Even more seriously, the Journal of the American Medical Association (1999) reported that individuals experiencing caregiver strain had mortality risks that were substantially higher (by 63%) than noncaregivers.

Some researchers claim that the availability of respite services has enabled families to improve spousal relationships. Also, it has been reported that as a result of the relief of stress from respite care services, individuals have reported satisfaction with life in general and improved attitudes toward the child who requires intensive caregiving (Botuck and Winsberg 1991).

Although families who use respite services may potentially reap positive effects, the scope and availability of this important service remains insufficient. In fact, according to the National Respite Coalition (1998), approximately one-half of the families needing respite will find available services. Additionally, Jill Kagan (2001) reports that 1,500 families representing more than 3,000 children per week are unable to obtain respite services because of the limited pool of available services. Moreover, with the increasing number of aging adults, paid respite services—to support a family's care of an aging relative—may directly compete with the availability and supply of respite programs that would otherwise provide respite support to children's caregivers.