ELDER CAREGIVING IN RURAL COMMUNITIES
Davis, RN, PhD
Projected increases in older
persons over the next decade, particularly in minorities and the "oldest-old"
population segments (those 85+years), make elder care one of the most
pressing health care issues for the 21st century. In that the characteristics
of a community influence the health care of its residents, nowhere is
the delivery of elder health care more challenging than in rural communities,
where low population density and large catchment areas combine with lack
of service access and reimbursement in creating barriers to community-based
elder care. Such factors contribute to long-term care admission rates
for rural elders that exceed those of urban communities.
Demonstration projects in rural
communities across a variety of states indicate that successful rural
caregiver assistance programs are those: developed in collaboration with
rural caregivers: endorsed by community leaders; and, staffed by persons
who live in or are familiar with the cultural and social values of the
community. Programs that compensate for geographic isolation through the
combination of periodic home visits and innovative information technologies
and telecommunications (e.g., peer caregiver telephone networks, telemedicine
and telenursing contact systems), may offer the greatest promise for helping
informal caregivers of rural elders.
Policy implications for
helping elders and their caregivers in rural communities
In 2000, 35 million persons age 65 and older were counted in the United States (U.S.) Census (U.S. Census Bureau, 1990; 2000). Demographers project a dramatic increase in this elder population segment over the next decade, as baby boomers (persons born from 1946 to 1964) reach age 65. Thus, one of the most pressing issues for the U.S. in the 21st century will be care of its elders. In that informal caregivers provide more than 70% of care services for community-dwelling elders, the need to support those family members, neighbors and friends who are essential providers of the informational, emotional and instrumental aid necessary to maintain elders in their homes is a crucial community health care program planning issue. Although the proportion of elders living in rural environments varies between regions (Clifford et al., 1993), rural communities have proportionally more elders. Twenty-nine states, primarily in the Midwest and South, currently have elder populations that exceed the 12.4% national average (U.S. Census, 2000). In the South, which has a larger proportion of Blacks, almost one in three Black elders lives in a rural area (Coward & Krout, 1998). This chapter explores the barriers and challenges faced by caregivers of elders in a rural community, identifies caregiver assistance needs, highlights programs that have been successful in meeting those needs, and presents the R.U.R.A.L model for developing successful caregiver assistance programs. The paper begins by setting the socio-demographic/economic context for service provision to elders residing in rural communities.
Elders in Rural Communities
The number of elderly persons
at risk for disability, functional limitations, and chronic health problems
continues to increase, creating a greater need for medical, mental health
and social services, as well as economic and physical support. Indeed,
an estimated 87% of the rural aged have some sort of chronic illness (Johnson,
1991), and a recent study supported by the Robert Wood Johnson Foundation
concluded that at least 1 in 3 persons with chronic health conditions
do not understand services they are eligible to receive, how to use these
services, or who provides these services (The Institute for Health and
Aging, UCSF, 1996). This is particularly true for the "oldest-old"
segment of the population (those 85+years), which increased by 37% from
1980-1990, compared to only a 16% increase in the 60-84 year old cohort
(Rogers, 1999). Thus, the stereotype of the "hale and hardy"
rural elder is unfounded (Coburn & Bolda, 2001).
As there are fewer young and
middle-aged adults in rural communities (because of employment-related
migration to urban centers), fewer elders in these communities live with
or have regular access to their children. Magilvy and colleagues (2000)
note that this is true even among rural Hispanic families, where cultural
norms are changing because fewer adult children are available to provide
care. Children and grandchildren often live far away and are unable to
visit, engendering stressful life events and chronic strain for rural
elders (Johnson, 1998).
The loss of young and middle-age
adults also has an adverse effect on the economy of a rural community,
reducing the per capita income as well as the tax dollars available for
education and health care. Older adults who reside in rural communities
have less formal education, are more likely to be poor, and are less likely
to have health insurance coverage than their urban counterparts (Coward,
McLaughlin & Duncan, 1994; Schwenk, 1994). This is especially true
for older women, the primary family caregivers in rural communities, who
have the greatest economic vulnerability (Rogers, 1998). In that more
rural workers are self-employed or work for small, privately-owned businesses,
fewer elders in these communities will have pension, savings or investment
incomes and will depend more heavily on Social Security benefits after
retirement (Glasgow, 2000; Vrabec, 1995). Changes in state and federal
policy will impact both rural elders and service providers, as Social
Security, Supplemental Security Income and Medicare account for a major
part of rural elders' incomes and provide critical support for local services
(Rogers, 1999, p. 23).
Further, rural health care
services are less accessible, less specialized and more costly to deliver
than those in urban areas (Rogers, 1993). The access of rural elders to
a range of health care services is also narrower than their urban counterparts,
and fewer community-based care alternatives are available to them. And,
although federal and state policies have encouraged community-based and
in-home services as economical alternatives to more costly institutionally
based care, rural elders continue to have a higher utilization rate of
nursing home services (Coward et. al., 1996).
From the statistics cited above,
the "at risk" person in a rural community would appear to be
an elderly Black woman, living alone and depending on others for transportation,
with only a social security pension income and whose children live at
a distance. However, service providers and policy makers in rural settings
must recognize that the rural aged are a heterogeneous lot, and the growing
diversity that characterizes rural America defies simple definition (Buckwalter,
Russell, & Hall, 1994). This argues for comprehensive and ongoing
needs assessment by the Aging Network before beginning any rural caregiver
projects (Lemke, Saha, Yankey, & Baenziger, 2001). (See Resources
section for information on how to construct a comprehensive needs assessment
survey from extant AAA databases-Dr. Jon Lemke).
Kelley, Buckwalter and Maas (1999) examined and refuted three commonly held societal assumptions embedded in the social expectation of family care for elderly persons with dementia. These assumptions are that family members: 1) are not providing enough care; 2) have innate skills and knowledge about how to provide care; and 3) have access to the appropriate resources for the provision of care. Although not specific to rural caregivers, these assumptions are very relevant to this group. Indeed, a national survey of caregivers of older adults found that 59% of caregivers received NO instruction about how to perform any of the activities of care for their ill family member. In this same survey, caregivers of persons with dementia reported a great need for someone to talk with and for help understanding long term care resources (National Alliance for Caregiving, 1997). Rural elders and their families are reported to find the formal health care system too complex and confusing, especially as the number of care transitions (e.g. from hospital to home) increase (Magilvy & Congdon, 2000). The transition to care provider may be particularly difficult for adult children, especially if they must give up their role as a wage earner, resulting in financial hardship (Henderson, 1992). The complexities of providing support are compounded for long distance caregivers, who must often make decisions and implement actions without onsite assistance.
While a recent national survey
of caregivers indicated 52% provided direct care services and 42% reported
giving medications and monitoring vital signs, almost two thirds of the
caregivers surveyed reported they did not live with the care recipient
(National Family Caregivers Association, 2000). However, the contributions
of informal caregivers are significant; they are estimated to provide
from 45 to 94 billion dollars of direct and indirect care service costs
each year (Arno, Levine & Memmott, 1999).
The Rural Caregiver
The following three situations were drawn from clinic files in one southern state to illustrate caregiver needs and challenges in rural communities, including: program availability and acceptability, inadequate mental health services, and changing needs over time. Additionally, the role of caregiver attitudes, values and beliefs, stigma and caregiver reluctance to seek help and to spend money on services, as they impede program provision in rural settings, are discussed and illustrated from the findings of a rural caregiver survey.
One of the first challenges in developing rural caregiver assistance programs is ensuring program services are available and acceptable to the caregivers. The Js exemplify caregiving situations common in many rural communities, where increasing health problems of an ancillary caregiver disrupts the relative stability of the home situation and the primary caregiver, who often is as impaired as the elder for whom they are caring, is resistant to change. In this situation, while they looked for someone in the community who could do the weekly shopping, the J's son and his wife increased their trips from the city to once a week. The situation resolved three months later, when the elderly Mrs. J died from a cerebral aneurysm and Mr. J finally agreed to move into the city.
In this situation, R.G. had stopped taking the psychotropic drugs necessary to control his schizophrenia and his increasingly frail elder brother became the object of his abuse. Based on the visitor's report to the community health center, welfare workers came out to the house and R.G. subsequently was admitted to the closest hospital as an acute psychiatric admission and finally to the state hospital as a psychiatric in-patient. One of the most frequently unmet needs in rural communities is for preventative and supportive mental health services (Neese, Abraham, & Buckwalter, 1999). Rural communities are less likely to have mental health professionals available in the community or to have the resources to offer in-service training on mental health techniques to their staff (Bane, 1997). Sources of mental health services in rural areas are often limited to community mental health centers, state hospitals, geographically scattered private practitioners, physicians and clergy, and utilization rates remain extraordinarily low (Neese et al., 1999).
Bane (1997) notes that service delivery problems in rural areas are also adversely affected by the passiveness of the system; that is, the system waits to be contacted rather than case-finding those individuals and their caregivers who are in need of assistance. One exception is the Gatekeeper program developed by the late Ray Raschko at the Spokane Community Mental Health Center Elderly Services. The Gatekeeper approach uses telephone information and referral, multidisciplinary in-home evaluation, treatment, and case management. An established system of rural community "gatekeepers," including meter readers, county assessors, and postal workers, helps identify residents in need of services. There is a pressing need for state-sponsored mental health training for rural health care providers (e.g., through outreach and distance learning programs) as well as for 'mobile' mental health providers who can take services out to homebound rural caregivers who are caring for an elder with a chronic mental illness. Mental health outreach programs in rural Iowa and Virginia are described later in this paper, and serve as best practices models for overcoming the challenge of inadequate mental health services, and identifying persons who are isolated and in need.
A dominant feature of elder
caregiving networks is their continuous evolution over time (Peek, Zsembik
& Coward, 1997). While most elders initially require only limited
assistance, after reaching a certain level of frailty the need for assistance
increases dramatically. In rural communities, the type of assistance needed
may not be readily available or, may require a combination of caregivers
and services be 'cobbled' together to keep the elder in the home. In the
case of Mrs. S., over the span of a single year, she progressed from being
her elderly husband's caregiver to independently living alone with daily,
minimal support phone contacts from her sister, to being a frail elder
who may or may not be able to continue living in her own home. As her
sister's caregiver, Barbara needs help first to find transportation to
get her sister in to town to see the doctor and dependent on the medical
findings, help in planning for the future. Thus, appropriate services
would be those designed with the recognition that need for different services
could vary over time; care recipients and caregivers could seesaw between
levels of professional care or care environments and community-based informal
support systems. Transitions between levels of care should be as "seamless"
and "fluid" as possible, which entails information transfer
and exchange across care environments and providers (Chalifoux, Neese,
Buckwalter, Litwak & Abraham, 1996, p. 477).
Factors Impeding Service
Provision to Rural Caregivers
According to Van Hook (1987),
the rural elderly are often provided with "scaled down urban service
models that fail to meet their needs or are insensitive to the real differences
between urban and rural areas" (p.13). To be successful, services
must mesh with other local programs and informal helping networks, and
service providers must understand and be sensitive to the rural value
system and social ecology of the area (Buckwalter et al., 1994). While
geographic distance from urban centers often precludes access to community-based
assistance programs, most rural communities are limited in fiscal resources
and infrastructure (program planners, trained workers, transportation)
necessary to develop their own community-based programs (Lemke, et. al.,
2001). This often results in barriers characterized as lack of: awareness,
availability, access, affordability, adequacy, appropriateness and acceptability
(Krout, 1994; Williams, Ebrite & Redford, 1991). Rural residents may
be unaware of services in their area or, the lack of specific service
availability in the community may decrease service affordability and increase
the time required to access those services. Locally available services
may be fragmented or of lesser quality (adequacy) or may not have the
necessary articulation with urban referral centers. Further, services
may not target the health care needs of residents (appropriateness) or
be acceptable to the cultural norms and ethnic beliefs of community residents.
Connell et al., (1996) noted that even when transportation was available,
caregivers in their focus group interviews reported that "the need
to travel long distances effectively eliminated the intended benefit of
support services (e.g. respite/adult day care, support groups) because
the free time caregiver's gained was spent in the car" (p.23).
An investigation of the needs, resources and responses of n=107 rural caregivers of persons with Alzheimer's disease (Buckwalter et al., 1994) revealed that only 51% of caregivers used ANY community-based services, with costs ranging from $16-$850 per month and averaging $73. The majority of costs for services was borne by the caregivers themselves, who reported that cost was a major barrier to service utilization, and that they were "saving their money to buy care in a good nursing home". Another reason given for low service utilization was that respondents were concerned that confidentiality might be a problem. Others stated they would not use any service where they accepted aid from agencies because they felt this was "too close to charity" and that "people should be self-sufficient" and "take care of their own problems" (p. 312).
In Iowa's Mental Health of
the Rural Elderly Outreach Project, many rural elders and their caregivers
believed that they should be able to handle problems themselves and viewed
mental health assistance as a sign of personal weakness, if not defeat
(Smith, Buckwalter, & DeCroix-Bane, 1997). Similar attitudinal barriers
were reported by Connell et al., (1996, p. 23), who noted that rural family
caregivers in focus group interviews expressed reluctance to seek community-based
services because they were seen as "hand-outs" or "welfare".
These caregivers felt they should be self-reliant and solely responsible
for the care of their older family members. These values and beliefs,
and the stigma associated particularly with the use of mental health or
counseling services, accounted in large part for the low use of formal
services in this rural population. Other program-related barriers reported
included poorly publicized programs, those perceived as having "too
much red-tape", and programs with certain restrictions such as those
that are means-tested. These barriers are consistent with those reported
by Collins and colleagues (1991) who noted that denial of symptoms and
reluctance to seek help can be attributed to feelings of shame, stigma,
fear of institutionalization and suspicion of the health care and service
systems. Ageism and misconceptions about illnesses, especially dementia,
among rural health care professionals also diminishes the likelihood that
caregivers will receive adequate information and referral for needed services
(Connell et al., 1996).
Despite these acknowledged
barriers, rural caregivers in the Buckwalter et al. survey (1994) were
highly motivated to undertake a difficult and burdensome role, and many
reported a deep sense of personal satisfaction and growth from the caregiving
experience. Data from the Caregiver Burden Scale indicated a strong sense
of moral obligation and personal desire as primary motivations for becoming
a caregiver, and reflected cultural and religious values of the region.
For example 92% of respondents indicated that "Caring is the Christian
thing to do" and a similar percentage reported that "God helps
them in their caregiving efforts". These findings are supported by
more recent research conducted by Martinez (1999) and Davis and Magilvy
(2000), who found that rural elders felt they had a responsibility to
help themselves, and also felt, that along with God's help, they could
survive life's challenges.
These attitudes may explain,
in part, the reluctance of many rural caregivers to seek help. Robinson
(1988; 1990) has developed a successful social skills training model for
caregivers that enables them to learn specific skills they need in order
to mobilize help from their social networks. The training program focuses
on assertive social skills such as how to give instructions when help
is offered, how to make a request for help, how to express appreciation
for support, as well as how to say "no". Individual counseling
sessions are augmented by written materials reinforcing key points covered
during the counseling sessions. Acquisition of these skills yields increased
social support and lowered caregiving burden.
Connell et al., (1996, pp.19-22)
developed a Community Outreach Education Model Program (COEP) for dementia
caregivers in rural Michigan. Using focus group interviews with family
caregivers and service providers, they identified a number of structural
and attitudinal barriers to effective service delivery. Many of these
same issues plague programs within the Aging Network. Structural barriers
affected help-seeking behavior and the experience of being a caregiver.
These barriers included: 1) Lack of coordination in the service delivery
system; 2) Cost of services; 3) Service agencies that are overburdened,
understaffed, or unavailable; 4) Distance and transportation; 5) Reimbursement
policies for services are too restrictive; 6) Lack of access to comprehensive
diagnostic and assessment services; and 7) Family physicians do not always
make referrals for services. Caregivers also reported frustrations related
to the utilization of needed services, such as being put on a waiting
list for services that were needed immediately, and difficulty understanding
complex reimbursement policies. Attitudinal barriers included: 1) Stigma
and guilt about seeking help and receiving services; 2) Value of self-reliance;
3) Belief that family members should be responsible for care; 4) Reluctance
to seek services until a crisis occurs; 5) Denial of symptoms; and 6)
Ageism. This same team also noted a number of community strengths to build
upon in designing services for rural caregivers, including: 1) Community
action and cooperation; 2) Close knit ties and long-established roots;
3) Dedication and caring for residents in rural areas; and 4) Strong cultural
Issues in Rural Case
Case management is designed to help clients find the least costly and most appropriate services that will meet their needs. Parker and colleagues (1992) published an extensive review of the issues and challenges related to providing case management services to families living in rural areas. They detail the most critical health care delivery and financing problems faced by rural communities, including third-party payer restrictions, reimbursement levels, provider recruitment and retention, competition with urban providers, emergency medical services, and regulations and paperwork. Additionally, differences between rural and urban case management are highlighted, focusing on lack of available and accessible services, financial constraints, staffing issues, poor discharge planning, and turf issues. These same themes are echoed throughout the rural case management literature. Indeed, Krout (1993) has cogently argued that case management is a process that can play an important role in overcoming many of the service delivery barriers cited above by containing costs, increasing awareness of and access to in-home services, targeting resources, preventing costly and unneeded institutionalization, coordinating various aging services, and, importantly for this paper, supporting family caregivers.
More recently (1997) he analyzed
data from a national sample of n=356 agencies regarding barriers to providing
case management services to rural older persons. To obtain the sample,
a list of 1,201 rural case management providers was developed through
phone calls to state health and social service departments and state units
on aging officials nationwide, who were read the definitions of case management
and rural, and who were then asked to provide contact information for
agencies meeting those definitions within their state. For purposes of
this research, only agencies that identified a primary service area as
rural, open country, small town, or village, or some combination of those
settings were included in the final sample (Krout, 1997, p. 144).
Regardless of whether they
provide indirect or direct care, informal caregivers of elders in rural
communities need a core set of skills that will enable them to accurately
monitor and interpret symptoms, successfully manage medical regimens,
provide hands-on care, find and utilize appropriate resources and make
sound caregiving decisions, all while providing affective support and
encouragement to the chronically-ill or disabled person (Schmall, 1995;
Schumaker, Stewart, Archbold, Dodd & Dibble, 2000). Thus, caregiver
assistance programs traditionally combine information on aging and chronic
illness with skill training on providing home care, as well as affective
support, counseling and periodic respite for the caregiver (c.f., Toseland,
Smith & McCallion, 2001, for a discussion of the content of caregiver
training programs). Caregiver assistance programs may be delivered through
individual, group and/ or family counseling sessions, in-home caregiver
skill training sessions and / or various technology-based mediums (e.g.
telephone contacts, computerized training programs, 2-way video interaction
systems). Technology innovations for rural case management and service
delivery are therefore briefly discussed in the next section.
The Role of Technology
in Delivering Services to Rural Caregivers
Two examples of successful
technology-based interventions are briefly described next. Brennan and
colleagues (1995) established and evaluated a computer network (ComputerLink)
to meet the educational and support needs of in-home caregivers of persons
with dementia. The computer network provided information (e.g. a self-care
encyclopedia), communication (e.g. an anonymous question and answer segment
and a public bulletin board forum); and decision-support functions (among
caregivers and a clinical expert). Outcomes included a significant increase
in caregiver confidence in decision-making and social support.
Mobile Outreach Programs
In 1978, the President's Commission on Mental Health noted, "Rural communities tend to be characterized by higher than average rates of psychiatric disorders, particularly depression, by severe intergenerational conflicts, by an exodus of individuals who might serve as effective role models for coping, by an acceptance of fatalistic attitudes and minimal subscription to the idea that change is possible" (p.1164). Regrettably, not much has changed over the past 23 years. Together with the often-fierce sense of self-determination, independence, dignity, privacy, and hardiness characteristic of many rural Americans (Lee, 1993), access issues, and the pronounced stigma associated with mental illness, elders most at risk do not present themselves for traditional mental health services. Fear of being labeled as crazy, of being shunned by friends and neighbors, or being "put away" in an institution prevents many rural residents and their caregivers from receiving needed mental health services and supportive assistance. Thus psychiatric problems among rural residents often go undiagnosed and untreated (Abraham, Buckwalter, Snustad, Smullen, Thompson-Heisterman, Neese, & Smith, 1993; Neese et. al., 1999), putting a tremendous strain on their caregivers.
Interdisciplinary psychogeriatric outreach models in rural Iowa and Virginia have been shown to be effective (as well as cost-effective) in delivering services to geographically and socially isolated elders and their caregivers (Abraham et al., 1993; Buckwalter, Smith, Zevenbergen, & Russell, 1991; Smith & Buckwalter, 1999). Both programs are community partnerships involving the local Area Agency on Aging and the community mental health system. (For a detailed description of the key components and a comparison of these outreach models, see Abraham et al., 1993, p. 206. For more information on the structure of the Mental Health of the Rural Elderly Outreach Project see Smith & Buckwalter, 1999, and for data on outcomes of the project see Buckwalter et al., 1991).
These models also emphasize the need for strong coordination and cooperation among mental health, medical and social service providers; maximizing limited resources; assuring continuity of care; and using professional, paraprofessional, and lay personnel. The mismatch between the needs of caregivers of the mentally ill rural elderly and the services available to them will not disappear in the foreseeable future, raising the short-term service issue regarding improvement of accessibility to local and regional resources, and the long-term policy issue of determination of reasonable levels of resource development, allocation, and equity.
The problems of transportation,
poverty, lack of trained personnel, low population density, and the large
catchment areas will continue to make the delivery of mental health services
more difficult in rural areas. Outreach models can make substantial gains
in overcoming these problems and providing needed services to rural elders
and their caregivers. Individualizing these programs to reflect local
culture, geography, need and resources improves both the delivery of care
and the ability of programs to be sustained over the long term (Abraham
et al., 1993, p 210).
An option for caregiver support
in rural settings often comes from faith-based initiatives. Under the
leadership of Dr. Karen Robinson, the University of Louisville School
of Nursing developed a successful dementia-specific Volunteer Caregivers
Program (VCP) that is an outgrowth of the Volunteer Interfaith Caregivers
of Kentuckiana. The idea for this support program began when representatives
from various religious congregations and a local Alzheimer's disease chapter
joined together and developed a vision to train volunteers to provide
in-home respite to keep caregivers connected to their support groups.
Since 1994 the VCP has provided support services to more than 100 caregivers
at no charge. Program services include assessment, care planning, education,
evaluation, information and referral, and volunteer support. The VCP also
provides free public services such as memory screening and community education
programs. (See Resources section for contact information)
Building a Seamless Delivery Dementia Care System in Rural Iowa (Dr. Janet Specht, PI, Dr. Geri Hall, Co-PI and Ann Bossen, Project Director) is a collaborative project between the Iowa Department of Elder Affairs, the University of Iowa's College of Nursing and Center on Aging, Area Agencies on Aging, Alzheimer's Association chapters and ResourceLink of Iowa. The three-year (2000-2003) Administration On Aging funded project (grant # 90AZ2366) is designed to provide expanded in-home services to rural Iowans and their caregivers who are affected by Alzheimer's disease and related disorders (ADRD). The project uses a community organization model, developed by the Big Sioux chapter of the Alzheimer's Association, to help rural communities develop care systems that meet their unique needs in eight rural counties throughout Iowa.
Two assumptions underlie this
approach: 1) If services are to be accepted within rural communities,
they must be designed by the community; and 2) If the community values
the services, they will refer neighbors to them. Other successful outreach
programs have also been based on a community development model (see The
Community Outreach Education Program, as described by Connell et al.,
1996), which is a process of working collaboratively with community members
"to assess the collective needs and desires for healthful change
and to address these priority needs through problem solving, utilization
of local talent, resource development and management" (Lassister,
1992, p. 30). Lassiter (1992, pp. 30-31) sets forth five tenets of community
development that are of special importance in rural areas: 1) Citizen
participation and partnership are essential for community improvement
and growth; 2) The focus of work will be on local concerns; 3) Citizen
groups are utilized in community development; 4) Implementation is suitable
to the locality; and 5) Process outcomes for the community are as important
as task undertakings.
The "Seamless Delivery
System" project is also designed to demonstrate the effects of an
in-home nurse care managed delivery system on care recipient and caregiver
well being. Four (experimental) of the 8 counties receive nurse care managers
(NCM) who are specially trained to provide in-home services, education
and support to persons with ADRD and their caregivers, with a particular
emphasis on building capacity in the caregiver by focusing on the well-being
and stressors clients identify. The NCMs work with the local case management
system to coordinate available services, refer clients to funding sources,
assist with community development programs and report to the AAAs. There
is also a telecommunications back up system, ResourceLink of Iowa, available
for both control and experimental counties. Individualized services are
offered to both persons with dementia and their caregivers, and dementia-trained
nurses work with care recipients and caregivers. The four control counties
have a local project facilitator (LPF) who is the referral point for services,
who completes intake forms, and refers clients to the existing Case Management
System. Caregiver outcomes include: Caregiver well being, endurance, and
stress. (See Appendix for Client Intake Forms for this project, especially
Part 2: Information about the caregiver). The investigators have identified
a number of structural and philosophical barriers to implementation, including
reticence to allocate services to caregivers assessed as having too many
resources or too much income. At present only baseline quantitative data
has been analyzed, so comparisons between control and experimental counties
are premature. However, several unique observations have emerged that
may prove useful in future programming efforts. Project implementers and
evaluators report that:
1. When the NCM is from the area she/he serves, the project is more successful. In many cases, the nurse has become a bit of a local celebrity, achieving the status one aging network professional described as "a trusted relative", and has been easily integrated into the community's perception as a "helping professional". This integration has fostered referrals from sources such as the local bank, churches, service and social clubs, and people in the rural town.
2. Several of the counties have enthusiastically embraced the community action programming. The fact that it was developed within and by their community exclusively has become a real source of pride. Programs that are clearly identified with community needs are more aggressively pursued than those that are developed by "outsiders" and "imposed" on consumers in the rural communities.
3. An unanticipated problem that has emerged in this project has to do with devaluation of the younger working caregiver. Some members of the community and the aging network have expressed concerns over providing services to someone who "works and has a salary", feeling younger, working caregivers aren't "justified" in receiving help. Clearly more education aimed at changing these attitudes is required-education illuminating the adverse psychosocial and financial consequences that may ensue should the caregiver be forced to quit employment in order to be eligible for services. One approach that was effective was to emphasize to members of the Aging Network that should the working caregiver have to resign, he/she would no longer be contributing to the county tax base and might also have to forfeit retirement earnings, but attitudes denying services to employed caregivers in rural areas persist.
In-Home Caregiver Support
Archbold and associates (1995)
tested the Preparedness, Enrichment, Predictability (PREP) system for
in-home family caregivers of elders. Through a Medicare waiver provision,
families in the experimental PREP group received 3-6 months of care from
PREP nurses, including systematic assessment, family focus, local and
cosmopolitan knowledge, individualized interventions using multiple strategies,
therapeutic relationships and transitions. Subjects in the control group
received standard HMO and in-home health agency care. Caregivers who received
the PREP system reported higher care effectiveness and overall usefulness
of the in-home staff. Hospital costs for the PREP group were also lower
($6929 vs. $2775).
National Family Caregiver
The final "Promising Practice"
to be highlighted is The Family Caregiver Support Program,
funded by the Heritage Area Agency and operated by Elder Services Incorporated,
Iowa City, Iowa. It serves family caregivers in a seven county region
and is comprised of two primary components: Information and Assistance
(I & A), and Family Caregiver Counseling. The I & A Specialist
receives inquiries from a nationwide toll free telephone number and provides
callers with information about appropriate state or local caregiver resources.
The Family Caregiver Counseling Specialist works one on one with family
caregivers in their home to assess their needs, develop a plan to address
problems, and enable caregivers to successfully maintain their role. Typically,
a short-term counseling model (usually 1-6 meetings) supports caregivers
during times of transition, and assists them in making important decisions,
although crisis intervention services are also available. The Counseling
Specialist may provide assistance in the form of I & A, skill building
(e.g. communication, caregiving skills), short term counseling, family
mediation, and arrangement of appropriate community services and resources.
Information is targeted to each caregiver's unique needs, and help is
provided to alleviate their sense of isolation and to feel supported in
their role. Family Caregiver Support services are funded by the NFCSP
and are provided free of charge. The majority of referrals come from case
managers who oversee services to clients involved in the Case Management
Program for the Frail Elderly. The Counseling Specialist addresses caregiver
needs, which may go unnoticed in the case management program. Other referral
sources include health care centers, aging service providers and members
of the community at large.
· Offer preventive counseling as well as supportive counseling services for distressed and depressed caregivers;
· Offer community programs that avoid labels that may make them socially unacceptable or stigmatizing for caregivers in a rural community (e.g., "Adult Day Care," "Respite Care" or Caregiver "Support" Group);
· Provide access to transportation services to community-based programs offerings, as well as home visitation services for individual caregivers;
· Offer caregiver "health
promotion" programs e.g., blood pressure checks, pap smears, mammograms,
during weekday, daytime hours so busy caregivers can combine self-care
activities for themselves with a doctor's appointment for the elder during
a trip into town;
· Make annual fund-raising
activities a regular part of program so as to insure local investment/ownership
in the project, which is critical to its success; and
Using an ecological model of adaptation and aging to view competencies within an environmental context, Lee (1993, pp 225-227) proposed a number of individual and community-based nursing care approaches. For purposes of this paper they have been modified by the authors to be more germane to service providers in the rural Aging Network, and are set forth in Table 3.
Betty Grandquist, current Coordinator
of the NFCSP in Iowa and former director of the Iowa Department of Elder
Affairs, has shared recommendations from her experiences in the Aging
Network, and with rural caregiver support programs in particular. These
2. Be sensitive to how the caregiver wants to be perceived some may reject the "caregiver" label, even though it makes them eligible for services, as they believe being categorized as "caregiver-care recipient" adversely changes the spouse-spouse or adult child-parent relationship.
3. Use a variety of approaches to alert rural caregivers to available services, including brochures, radio and TV spots, educational programs, web sites etc. A multi-media consumer publicity "blitz" is a good way to kick off new programs or projects.
4. Many factors are involved in the success or failure of a program in rural settings, such as availability of quality services, transportation, etc.
Ms. Grandquist advises that
flexibility and a common sense approach to the allocation of funds are
the hallmarks of any successful program for rural caregivers. For example,
in one case a care recipient received burns from an old gas stove while
the caregiver was bathing. In this case, an appropriate intervention might
be one related to adjustment of the home environment; that is, to use
available money to assist the caregiver in purchasing a safer appliance
and teaching them how to disable the stove when not directly monitoring
the care recipient. Finally, she cautions that, to the extent possible,
avoid bureaucracies that impede getting the money to where it is needed
from rural family caregivers in the COEP (Connell et al., 1996, p. 24)
included the need to target educational interventions to information and
referral agencies (e.g. staff of AAAs), government agencies (e.g. Commission
on Aging, law enforcement agencies), and the public using outreach to
service clubs, churches, the local business community and community centers.
These caregivers also suggested development of a speaker's bureau as a
mechanism to disseminate information to the community. Community involvement,
a sense of ownership and group identity, and a commitment to the program
were viewed as vital to long term change in the response of people to
caregivers of persons with dementia in rural communities.
Finally, Parker et al., (1992,
p. 57) offer a number of recommendations on ways to develop case management
approaches in rural areas. Their suggestions are based on survey results
as well as input from rural case managers in Minnesota and Wisconsin,
and were designed to reduce the isolation of rural providers and to increase
their support and contact with physicians. Recommendations included: 1)
Provide outreach education programs to professionals; 2) Use the electronic
media to disseminate information; 3) Contact congressional officials to
reinforce the need to expand Medicare benefits to rural areas; and 4)
Improve interdisciplinary teamwork and relationships.
Rural areas have long been characterized as having a unique set of conditions that make service delivery difficult. These include poverty, isolation, difficulties with transportation, sparse and scattered population, resistance to innovation and too few human service agencies, trained professionals and health care resources. Thus, rural health and human service providers are challenged to "define and creatively meet the service needs" (Bice, 1987, p. 9) of rural caregivers. In order to do this, members of the Aging Network may have to become what Dobkin (2001) has called "social entrepreneurs". That is, persons who "adopt a passion or mission to solve a societal problem" with "continuous creativity, flexibility, and stamina" undeterred by limited resources (Dobkin, 2001, p. 33).
To be successful, service providers
must offer rural caregivers better coordination of services, improved
communication among local agencies (Connell et al., 1996), consistent
relationships with providers they trust, and improved access to information
(Davis & Magilvy, 2000). Indeed, in order to overcome the many attitudinal
and logistic barriers to service delivery in rural areas, community based
outreach efforts must include representation from health care professionals,
service providers, staff of community organizations and volunteers. "Cooperative
efforts help to develop community competence and empowerment, and provide
a greater understanding of cultural values and beliefs" (Connell
et al., 1996, p. 16).
Effective rural caregiver support programs must get needed services to often-isolated rural elders WHEN and HOW they need them. Services should be caregiver, not provider, driven, and flexibility should be the watchword. Desired programs are available, accessible, accommodating, acceptable and affordable. Some effective programmatic approaches identified in this chapter include: mobile outreach programs, in-home visitation, satellite clinics, and increased use of telemedicine and information technologies. The RURAL model is set forth as a way to provide caregiver support and training and to meet the diverse needs of rural caregivers while accommodating the characteristics of their social networks.
Abraham, I. L., Buckwalter, K. C., Snustad, D. G., Smullen, D. E., Thompson-Heisterman, A. A., Neese, J. B., & Smith, M. (1993). Psychogeriatric outreach to rural families: The Iowa and Virginia models. International Psychogeriatrics, 5(2), 203-211.
Aneshensel, C., Pearlin, L., & Schuler, R. (1993). Stress, role captivity and the cessation of caregiving. Journal of Health and Social Behavior, 34, 54-70.
Archbold, P., Stewart, B., Miller, L., Harvath, T., Greenlick, M., Van Buren, L., et al. (1995). The PREP system of nursing interventions: A pilot test with families caring for older members, Research in Nursing & Health, 18, 3-16.
Arno, P., Levine, C., & Memmott, M. (1999). The economic value of informal caregiving. Health Affairs, 18, 182-188.
Bane, S. D. (1997). Rural mental health and aging: Implications for case management. Journal of Case Management, 6(4), 158-161.
Barnes, N. D. (1997). Formal home care services: Examining the long-term care needs of rural older women. Journal of Case Management, 6(4), 162-165.
Bastida, E. (1988). Some critical issues affecting older women in rural areas and small towns. Convergence (pp.99-104). Kansas City, MO: Mid-America Society on Aging.
Bice. M. V. (1987). Aging services delivery: A strategized approach. Rural Health Care, 9(1), 9.
Brennan, P., Moore, S., & Smyth, K. (1995). The effects of a special computer network on caregivers of persons with Alzheimer's disease. Nursing Research, 44, 166-172.
Buckwalter, K., Hall, G., Kelly, A., Sime, A., Richards, B., & Gerdner, L. (1992). PLST Model-Effectiveness for Rural ADRD Caregivers (Grant No: 5R01NR03234). Bethesda, MD: National Institute of Health, National Institute of Nursing Research.
Buckwalter, K.C., Smith, M. Zevenbergen, P., & Russell, D. (1991). Mental health services of the rural elderly outreach program. The Gerontologist, 31(3), 408-412.
Buckwalter, K. C., Russell, C., & Hall, G. (1994). Needs, resources, and responses of rural caregivers of persons with Alzheimer's disease. In E. Light, G. Niederehe, & B. D. Lebowitz (Eds.), Stress effects on family caregivers of Alzheimer's patients: Research and interventions (pp. 301-315). New York, NY: Springer Publishing Company.
Chalifoux, Z., Neese, J., Buckwalter, K.C., Litwak, E., & Abraham, I.L. (1996). Mental health services for rural elderly: Innovative service strategies. Community Mental Health Journal, 32(5), 463-480.
Clifford, William B., & Lilley, S. C. (1993). Rural elderly: Their demographic characteristics. In C. Neil Bull (Ed.), Aging in Rural America (pp.3-16). Newbury Park, CA: SAGE Publications, Inc.
Coburn. E. F., & Bolda, E. J. (2001). Rural elders and long-term care. Western Journal of Medicine, 174), 209-213.
Collins, C., Stommel, M., King, S., & Given, C. W. (1991). Assessment of the attitudes of family caregivers toward community services. The Gerontologist, 31, 756-761.
Congdon, J. G., & Magilry, J.K. (1998). Rural nursing homes: A housing option for older adults. Geriatric Nursing, 19, 157-199.
Connell, C. M., Kole, S. L., Avey, H., Benedict, C. J., & Gilman, S. (1996). Attitudes about Alzheimer's disease and the dementia service delivery network among family caregivers and service providers in rural Michigan. American Journal of Alzheimer's Disease, May/June, 15-25.
Coward, R., & Krout, J. (Eds.). (1998). Aging in rural settings: Life circumstances and distinctive features. New York: Springer Publishing Company.
Coward, R., McLaughlin, D., Duncan, P., & Bull, N. (1994). An overview of health and aging in rural America. In R. Coward, N. Bull, G. Kulkulka, & J. Galliheer (Eds.), Health service for rural elders (pp. 1-32). New York: Springer.
Coward, R. T., Netzer, J. K., & Mullins, R. A. (1996). Residential differences in the incidence of nursing home admissions across a six-year period. Journal of Gerontology, 51, S258-S267.
Davis, R., & Magilvy, J. K. (2000). Quiet pride: The experience of chronic illness by rural older adults. Journal of Nursing Scholarship, 32(4), 385-390.
Dobkin, L. (2001). Will social entrepreneurship take hold in the Aging Network? Innovations 30(3), 30-33.
Glasgow, N. (2000). Rural/urban patterns of aging and caregiving in the United States. Journal of Family Issues, 21(5), 611-631.
Gwyther, L. (1995). When "the family" is not one voice: Conflict in caregiving families. Journal of Case Management, 4, 150-155.
Harrow, B., Tennstedt, S., & McKinley, J. (1995). How costly is it to care for disabled elders in the community? The Gerontologist, 35, 803-813.
Henderson, M.C. (1992). Families in transition: Caring for the rural elderly. Family and Community Health, 14(4),61-70.
Institute for Health and Aging, University of California, San Francisco. (1996). Chronic care in America: A 21st century challenge. Princeton, NJ: The Robert Wood Johnson Foundation.
Johnson, J. E. (1991). Health care practices of the rural aged. Journal of Gerontological Nursing, 17(8), 15-19.
Johnson, J. E. (1998). Stress, social support and health in frontier elders. Journal of Gerontological Nursing, 24(5), 29-35.
Kart, C. (1991). The realities of aging. Boston: Allyn-Bacon.
Kelley, L. S., Buckwalter, K. C., & Maas, M. L. (1999). Access to health care resources for family caregivers of elderly persons with dementia. Nursing Outlook, 47(1), 8-14.
Kenney, G. M. (1993). Is access to home care a problem in rural areas? American Journal of Public Health, 83, 412-414.
Krout, J. (1994). An overview of older rural populations and community-based services. In J. Krout (Ed.), Providing community-based services to the rural elderly (pp. 3-19). Thousand Oaks, CA: SAGE Publications, Inc.
Lassiter, P. G. (1992). A community development perspective for rural nursing. Family & Community Health, 14(4), 29-39.
Lee, H. J. (1993). Rural elderly individuals: Strategies for delivery of nursing care. Rural Nursing in Nursing Clinics of North America, 28(1), 219-230.
Lemke, J. H., Saha, C., Yankey, J., & Baenziger, J. (2001, May). Assessment of the unmet needs of the frail elderly in case management: Phase I. Iowa City, Iowa: University of Iowa, Center on Aging.
Lieberman, M., & Fisher, L. (1995). The impact of chronic illness on the health and well-being of family members. The Gerontologist, 35, 94-102.
Lindberg, C. C. S. (1997). Implementation of in-home telemedicine in rural Kansas: Answering an elderly patient's needs. Journal of the American Medical Informatics Association, 4(1), 14-18.
Magilvy, J. K., & Congdon, J. G. (2000). The crisis of health care transitions for rural older adults. Public Health Nursing, 17(5), 336-345.
Magilvy, J. K., Congdon, J. G., Martinez, R. J., Davis, R., & Averill, J. (2000). Caring for our own: Health care experiences of rural Hispanic elders. Journal of Aging Studies, 14(2), 171-190.
Martinez, R. J. (1999). Close friends of God: An ethnographic study of health of older Hispanic adults. The Journal of Multi-cultural Nursing and Health, 5(1), 40-45.
MetLife (1999). The MetLife juggling act study: Balancing caregiving with work and the costs involved. Westport, CT: Metropolitan Life Insurance Company.
National Alliance for Caregiving, American Association of Retired Persons. (1997, June). Family care-giving in the U.S. (Findings from a national survey). Bethesda, MD; Washington, DC.
Neese, J.B., Abraham, I.L., & Buckwalter, K.C. (1999). Utilization of mental health services among rural elderly. Archives of Psychiatric Nursing, 13(1), 30-40.
Netzer, J., Coward, R., Peek, C., Henretta, J., & Duncan, R. (1997). Race and residence differences in the use of formal services by older adults. Research on Aging, 19(3), 300-332.
Peek, C., Zsembik, B., & Coward, R. (1997). The changing caregiving networks of older adults. Research on Aging, 19 (3), 333-361.
Redford, L. J., & Parkins, L. G. (1997). Interactive televideo and the internet in rural care management. Technology and Rural Case Management, 6(4), 151-157.
Robinson, K. (1990). The relationship between social skills, social support, self-esteem, and burden in adult caregivers. Journal of Advanced Nursing, 15, 788-795.
Robinson, K. M. (1988). A social skills training program for adult caregivers. Advances in Nursing Science, 10(2), 59-72.
Rogers, C. C. (1993). Health status and use of health care services by the older population (RDDR-86). U.S. Dept. Agr., Econ. Res. Serv.
Rogers, C. C. (1998). Poverty of older women across the rural-urban continuum. Rural Development Perspectives, 13(2), 2-9.
Rogers, C. C. (1999). Changes in the older population and implications for rural areas (RDRR-90). Food and Rural Economics Division, Economic Research Service, U.S. Department of Agriculture.
Schmall, V. (1995). Family caregiver education and training: Enhancing self-efficacy. Journal of Case Management, 4, 156-162.
Schumacher, K., Stewart, B., Archbold, P., Dood, M., & Dibble, S. (2000). Family caregiving skill: Development of the concept. Research in Nursing & Health, 23, 191-203.
Schwenk, R. N. (1994). Income and Consumer expenditures or rural elders. Family Economics Review, 7(3), 20-27.
Siegel, J. S. (1993). A generation of change: A profile of America's older population. New York: Russell Sage Foundation.
Smith, M., & Buckwalter, K.C. (1999). Outreach to mentally ill older adults in rural communities: An important role for nurses. The Journal, 10(3), 42-45.
Smith, M., Buckwalter, K.C., & DeCroix-Bane, S. (1997). Rural settings. In N.K. Worley (Ed.), Mental Health Nursing in the Community (pp.276-289). St. Louis: Mosby.
Toseland, R., Smith, G., & McCallion, P. (2001). Helping family caregivers. In A. Gitterman (Ed.), Handbook of scoial work and practice with vulnerable and resilient populations (2nd edition) (pp. 548-581). New York: Columbia University Press.
U.S. Census Bureau, Census 1990; Census 2000
Van Hook, R. (1987). Rural health crisis for the elderly. Rural Health Care 9(2), 13.
Vedhara, K., Shanks, N., Anderson, S., & Lightman, S. (2000). The role of stressors and psychosocial variables in the stress process: A study of chronic caregiver stress. Psychosomatic Medicine, 62, 374-385.
Vrabec, N. (1995). Implications of U.S. health care reform for the rural elderly. Nursing Outlook, 43(6), 260-265.
Williams, M., Ebrite, F., & Redford, L. (1991). In-home services for elders in rural America. Kansas City, MO: National Resource Center for Rural Elderly.
Dr. Kathleen Coen Buckwalter is the Associate Provost for Health Sciences, Co-Director of the Center on Aging, and Distinguished Professor of Nursing at the University of Iowa. Her work has focused on improving mental health services and providing community-based care for chronically ill older persons. Her specific clinical and research interests are in the area of geriatric mental health. Dr. Buckwalter's research has been funded by several branches of the NIH, as well as numerous private foundations. She has authored over 250 articles, 75 book chapters, and has written or edited 8 books.
Dr. Linda Lindsey Davis is Professor in the School of Nursing and Senior Scientist in the Center for Aging at the University of Alabama at Birmingham. Her program of research focuses on families and caregiving across the lifecycle with a special emphasis on family stress, coping and adaptation in caregiving for frail elders. She is principal investigator for a study funded by the National Institute of Nursing Research (NR 00095) to explore the efficacy of telephone contacts for training family members in rural and underserved areas to provide home care for a demented elder. Dr. Davis has published over 50 papers on family issues, family caregiving, elder care and family research instrumentation.
The authors wish to thank and acknowledge the following individuals for their contributions to this paper: Linda Hartzler for secretarial and editorial assistance; Diane Rotella and Sally Engler for help gathering relevant literature; and Betty Grandquist, Steve Siglin, Geri Hall, Janet Specht, Ann Bossen, Jon Lemke, and Karen Robinson for sharing programmatic information.
1. For information on elder
care resources, contact:
2. For information on general
health issues in rural America, contact:
3. For activities of all state
offices of rural health, contact:
4. For Information Regarding
Assessment Issues for Rural Case Management, and How to Blend Extant AAA
Data Bases contact:
5. For Information on Faith-Based
Communities, the Volunteer Caregiver Program at the University of Louisville,
and Social Skills Training Groups for Caregivers contact:
6. For Information Regarding
the New Home Safety Assessment Scale for People with Dementia Living at