Journal of Gerontological Nursing

Respite For CAREGIVERS: A Community-Based Model in a Rural Setting

Jill M Hayes, PhD, RN, C

Abstract

ABSTRACT

Currently in the United States, 4 million Americans suffer from Alzheimer's disease (AD), and projections are that this population will increase to 7 million by the year 2040. Traditionally, care for these clients is provided by family, relatives, and friends - an informal caregiver network (ICN). Changing demographics in the United States are threatening this caring network. When these factors are coupled with the recent emphasis on cost containment in health care, caring for this client population has become a significant political, economic, and societal issue. Strategies must be developed to meet the needs of both the clients and their caregivers. Respite services have been identified as an effective strategy in the ongoing management of clients with AD. A model is proposed to provide community-based respite services in a rural setting in northeast Georgia. The need for respite services, along with barriers to the use of such services by clients and their caregivers, is described. Strategies to overcome barriers and provide needed services in a cost effective and sensitive manner are presented. Implications for nursing and related disciplines are discussed.

Abstract

ABSTRACT

Currently in the United States, 4 million Americans suffer from Alzheimer's disease (AD), and projections are that this population will increase to 7 million by the year 2040. Traditionally, care for these clients is provided by family, relatives, and friends - an informal caregiver network (ICN). Changing demographics in the United States are threatening this caring network. When these factors are coupled with the recent emphasis on cost containment in health care, caring for this client population has become a significant political, economic, and societal issue. Strategies must be developed to meet the needs of both the clients and their caregivers. Respite services have been identified as an effective strategy in the ongoing management of clients with AD. A model is proposed to provide community-based respite services in a rural setting in northeast Georgia. The need for respite services, along with barriers to the use of such services by clients and their caregivers, is described. Strategies to overcome barriers and provide needed services in a cost effective and sensitive manner are presented. Implications for nursing and related disciplines are discussed.

With the current emphasis on quality cost-effective care, the care of individuals with Alzheimer's disease (AD) is receiving special scrutiny. Four million Americans suffer from this disorder, and projections are that 7 million will be diagnosed with AD by the year 2040 (Collins, King, & Kokinakis, 1994). Traditionally, care for this population has been provided by family, relatives, and friends - an informal caregiver network (ICN) (Riggs, 1991). Changing demographics are diminishing the pool of ICNs (Montgomery & Borgatta, 1989). More women are entering the workforce, birth rates are lower, and there is an increased mobility of United States residents, resulting in fewer children available to care for their elderly parents. Yet, in the absence of this informal network, care of AD clients is estimated to cost in excess of $54 billion per year (Riggs, 1991). Therefore, programs to support ICNs in the care of individuals with AD are essential. One such program is discussed in this article.

NEEDS OF AD CLIENTS

Individuals with AD experience increasing memory loss, ultimately leading to a complete inability to perform activities of daily living (ADLs). In addition, they frequendy wander and exhibit agitation or aggressive behaviors. As a result of these impairments, individuals with AD require constant supervision and increasing assistance with ADLs (Conlin, Caranasos, & Davidson, 1992).

CAREGIVER ROLE

The role of caregiver exacts an overwhelming physical, emotional, financial, and social toll (Rosenheimer & Francis, 1992). In the absence of supportive services for caregivers, individuals with AD are frequently inappropriately institutionalized or suffer abuse and neglect from caregivers (Conlin et al., 1992). Caregivers of individuals with AD acknowledge the burden of social isolation and lack of time for oneself. According to Schwarz and Blixen (1997), caregivers of clients with dementia experience significantly more stress and depression than caregivers of nondementia clients, and caregiver strain increases with a decline in cognitive functioning of the care recipients. Riggs (1991) states that caregivers of individuals with AD are at risk for stress-related illness, depression, physical and mental problems, and physical and financial exhaustion.

RESPITE SERVICES

In the United States, available services to assist clients with AD and their ICNs include homemaking services, home-delivered meals, home companions, transportation to physician appointments and health care agencies, home health visits and in some areas physician home visits (Collins et al., 1994), as well as organized respite services. Respite care is defined as "ongoing relief" for caregivers of clients being cared for in the home (Rosenheimer & Francis, 1992, p. 21). Lawton, Brody, and Saperstein (1989) define respite as a service or group of services which provide caregivers with temporary relief and rest from the caregiving role. Respite may be provided by an ICN or a formal network of health care providers such as those funded through government subsidy, nonprofit agencies through grant funding or a fee-for-service basis.

Conlin et al. (1992) discuss caregiver respite services available in both an assisted living facility and in the home of clients with AD. No structured recreational activities were offered, and Conlin et al. do not identify benefits specific to either setting. Kelley (1997) advocates for the provision of respite services to clients with AD in social settings such as day care centers and senior centers where the individuals with AD are provided the opportunity to interact with peers and perform meaningful social activities. Rosenheimer and Francis (1992) describe a respite program in a hospital-based secured unit specifically designed for dementia clients, which provides assistance with ADLs, along with social and recreational activities.

BENEFITS OF RESPITE

Rosenheimer and Francis (1992) state respite services, in the home or at a distant site, provide caregivers with time off, reduced stress, the ability to socialize with friends, vacation time, and opportunities to put themselves first. In addition, clients with AD benefit from increased socialization, stimulation, interaction with peers, activities geared to their level, time with trained caregivers, and caregivers who are refreshed on their return to the home care environment. Caserta, Lund, Wright, and Redburn (1987) also tout the benefits of respite services and claim such programs complement care being provided in the home.

Montgomery and Borgatta (1989) support the benefits of respite programs. They believe these services may delay institutionalization of individuals with AD if the caregivers are adult children. In contrast, Lawton et al. (1989) reported high customer satisfaction with respite services, but institutionalization of clients with dementia was delayed only for a short period of time. They also report respite services were ineffective in providing significant relief from caregiver burden or improvement in the mental health status of caregivers. Collins et al. (1994) also reported a limited effect on the rate of institutionalization of clients with AD whose caregivers were provided with respite services and only slight improvement in the quality of life of caregivers and care recipients.

In 1997, Schwarz and Blixen addressed the issue of caregiver strain and depression. These authors proposed that when respite services were provided by home health agencies, caregiver strain and depression would be diminished and caregiver appraisal would be more positive. However, findings reflected no significant improvement in these three variables, which Schwarz and Blixen attributed to the use of home health aides rather than RNs and the absence of actual respite for caregivers from the daily hands-on provision of care. Gwyther (1989) described increased caregiver satisfaction with their ability to pursue personal activities, a better understanding of the caregiver role, an ability to provide higher quality care with more confidence, and a tendency to use additional community services following involvement with respite services. However, no significant change in caregivers' sense of well-being was noted. In the face of multiple studies demonstrating no significant benefit to the ICN, Riggs (1991) reported 66% of caregivers surveyed considered respite services essential, and more than 95% rated these services important. Seventyfive percent of participants reported an improvement in their health, and 76% claimed they were better able to manage the day-to-day role of caregiver when provided with respite services. Finally, 64% of caregivers described themselves as more in control after receiving respite services.

BARRIERS TO USE

Despite empirical support for the benefits of respite services, most respite programs for clients with AD report low use and difficulties in recruiting participants. McCabe, Sand, Yeaworth, and Nieveen (1995) report a tendency among informal caregivers of individuals with AD for isolation and underuse of support services. Reasons offered were lack of knowledge of available services and the caregivers' need for guidance and education in responding to the needs of clients with AD and their own need for respite. Rosenheimer and Francis (1992) propose family caregivers experience guilt when they leave their loved one and have difficulty allowing themselves some "time off." In addition, their findings indicate some caregivers view respite services as costly and inflexible and often do not perceive caring for a person with AD as a long-term problem. Respite services are seen as a final step, rather than a service to be used early in the caregiving process.

Collins, Stommel, King, and Given (1991) claim the attitude of caregivers impedes the use of respite services. Specifically, informal caregivers prefer to provide all the care themselves, have concern about using formal support services, and often question the quality of formal support services. Caserta et al. (1987) and Collins et al. (1994) also claim respite services are underused by ICNs because of concern regarding the management of functional and health problems in individuals with AD. Additional factors identified include lack of informal community linkages to facilitate entry, the degree of caregiver involvement in the dayto-day care, and the resources available. Finally, Riggs (1991) reports similar reasons for underuse of respite services and views complex eligibility requirements as a contributing factor.

PROPOSED MODEL FOR RESPITE CARE DELIVERY

According to the studies reported in this article, respite care is regarded as an essential service for the ICNs of individuals with AD. However, barriers exist to the use of these services. For respite programs to be effective, the needs of caregivers and individuals with AD must be considered, and program planners must confront the aforementioned characteristics of caregivers which appear to preclude use of such services.

A model for the provision of respite services to caregivers of individuals with AD and other dementing disorders has been operating in a rural county in northeast Georgia for 2 years, serving between four and eight clients each week. The program was created to provide support to the caregivers of individuals with AD and related disorders (ADRD). The program was promoted to appeal to ICN providers and their specific needs for "time off," temporary relief from responsibilities, socialization, and the recognized need for special care of their loved ones.

The Community-Based Model (Figure) fits well with the recommended program characteristics outlined in the literature. Gwyther (1989) suggests respite services be established in the community where the targeted population resides to promote a perception of familiarity and cultural sensitivity among service providers and consumers. When service providers are known to the clients prior to the onset of AD or were fellow church members, which is reflective of the indigenous nature of the community, the program services are more favorably accepted. Special training related to behavioral management and communication skills specific to individuals with AD should be provided for all staff involved in the program with a nurse in the position of case manager for the population served. The program should be flexible regarding the activities and services provided, and there should be emphasis on the benefits of the program for clients with dementia to ease the concerns of caregivers. Lawton et al. (1989) propose that core services include assessment of client and caregiver needs, caregiver education, case management, careful monitoring of clients, counseling for caregivers, and transportation. Caserta et al. (1987) discuss the importance of promoting respite services to ensure caregivers' awareness of their existence, education of caregivers, effective strategies to facilitate entry, assessment of the level of impairment in individuals with ADRD, and clearly stated criteria for admission and discharge. According to Gwyther (1989), respite services must be more than just available - the services must be provided by trained individuals, sensitive to the needs of the dementia clients and their caregivers, and easily accessible.

The Community-Based Model operates in the senior center of the county where the targeted population resides (Gwyther, 1989). The senior center is county administered and is the coordinating point for community-based outreach services such as home-delivered meals, homemaking services, and congregate activities. With its existing facilities and amenities and the countybased network for referrals, the center is an appropriate setting for the provision of respite services (Kelley, 1997). The center director is a lifelong resident of the community, well known to residents, and therefore, sensitive to the community's culture and residents' needs. Two nurses serve on the advisory board as consultants to the program director, coordinating staff training and assisting in the development of program policies and procedures. As case managers, the nurses assist in decision-making related to client assessment and care and with referrals to social services as needed. In addition, the nurses act as liaisons with the clients' physicians and local health care agencies and assist with the overall monitoring of program effectiveness (Gwyther, 1989; Lawton et al., 1989). Support services include a cadre of community volunteers, baccalaureate nursing students, and graduate physical therapy students from the nearby university. All staff and volunteers receive 40 hours of training in the management of individuals with ADRD. Congregate participants at the center also received training related to dementing disorders and associated behaviors to facilitate the integration of respite participants into congregate activities as appropriate. Upon referral to the program, each potential respite participant and their caregiver is assessed by the nurse consultant or the program director to facilitate individualization of the program to the extent possible.

The environment at the center is safe and secure. Program participants receive one-on-one supervision and companionship with a trained respite provider who is sensitive to their needs. Integration of participants into the congregate activities at the center provides the opportunity for communication with peers suffering similar disorders as well as those unaffected with dementia - a valuable stimulus shown to enhance the quality of life of clients with ADRD (Kelley, 1997). This communication also promotes a sense of security and belonging (Beck & Heacock, 1988). In addition, when individuals with ADRD who have similar needs interact, supportive and positive comforting relationships are formed (Kelley, 1997). Meaningful activities such as arts and crafts offer an opportunity for creativity, activity, and social interaction. Appropriate videotapes are shown to stimulate reminiscence and assist the participants to find meaning in their Uves (Lund, Hill, Caserta, & Wright, 1995).

Additional services include caregiver counseling in the form of support group activities, education, and guidance by program staff (Caserta et al., 1987; Lawton et al., 1989; Rosenheimer & Francis, 1992). Transportation to and from the senior center, using the handicapped-accessible van, is available as necessary to promote participation (Lawton et al., 1989). The cost of transportation, a trained driver, and a volunteer to accompany the driver was written into the grant proposal. The program is designed to be flexible, made possible by the availability of the facility on weekdays and the willingness of the staff to be flexible in their time commitments.

To recruit participants and enlist referrals, the program has been promoted to all social and health care agencies, local physician offices, and churches in the county (Lawton et al., 1989). The program was designed and promoted to serve individuals with ADRD in an attempt to reach a broader authence and increase use (Rosenheimer & Francis, 1992). The senior center staff play an active role in the support of homebound residents of the county, providing referrals to the program when appropriate. Articles in local newspapers and interviews on local radio talk shows also have been used to promote the program and encourage families in need of the services to contact the center director. Clients may be referred to the program from any of these sources.

As reflected in the Model, social service and health care agencies, as well as physicians in the community, are supportive of the program and the clients and are available when needs arise which fall under their purview. Representatives from these sources serve on the program advisory board and assisted in initial program development. The nurse consultants have established relationships with these agencies and personnel and are able to enlist their expertise when necessary. Admission and discharge criteria based on the stage of disease and behavioral manifestations have been developed to facilitate the screening of potential participants. Ongoing assessment is performed by all trained staff, and the nurse consultant is available for support and decisionmaking related to program components and client management. The program was designed on a fee-forservice basis with a sliding scale for cost determination. No eligible client is denied entry.

The program is the only one of its kind in the county. Accessing similar programs would necessitate travel of approximately 40 miles to a different county and involve eligibility requirements, which are viewed by some as an additional barrier to use (Gwyther, 1989). Caregivers would be required to provide transportation.

Anecdotal data received from participants' ICNs indicate some benefits already have been achieved through the program. Families report an improvement in the caregivers' sense of well-being, reduction in fatigue, and increased opportunity for much-needed socialization. Formalized program evaluation to measure the benefits to both caregivers and care recipients is pending.

IMPLICATIONS FOR NURSING

The initiation of such a respite program has significant implications for nursing. As health care in the United States moves to a strong community and in-home focus, emphasis must be placed on health promotion and disease prevention among clients and their caregivers (McCabe et al., 1995). Evidence abounds related to the incidence of stress-related illness in the ICNs of AD clients (Jones & Peters, 1992; Schwarz & Blixen, 1997). Respite programs assist in the alleviation of some of the burden and stress of caregiving (Riggs, 1991). In addition, through a concerted effort at consumer education, caregivers are made more aware of their needs, become active participants in personal health promotion activities, and exhibit a tendency to use additional community resources as the need arises (Collins et al., 1994). Nurses are well suited to provide such education.

Nurse educators are consistendy seeking new and relevant clinical sites. Clinical experiences must increasingly be community-based to promote the skills needed by health care providers in the future. Association with respite programs such as the one described in this article provides students in nursing and other disciplines opportunities to work with older clients with a variety of conditions. In addition, students are able to participate in the maintenance and enhancement of optimal functioning of clients with ADRD, and health promotion and disease prevention in both the clients and their caregivers (McCabe et al., 1995).

REFERENCES

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10.3928/0098-9134-19990101-08

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