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Resources
& Tools
Prepared by:
University of Kansas
Rhonda J. V. Montgomery, PhD
Tracy X. Karner, PhD
Jay P. Schaefer, PhD
Kelly Hupp, MA
Susan Klaus, MSN
Maureen Schleyer, BA
University of Nebraska, Omaha
Karl Kosloski, PhD
Contents of the Report (Released April
2003)
Melanie K. Starns, MAG, Administration on Aging
Note: also produced in a double special
issue of Home Health Care Services Quarterly (journal) as well
as the book found at Haworth Press.
PURPOSE
This document reports findings from three related studies that extended
the initial evaluation of the ADDGS program to obtain additional information
about the patterns of use and delivery of respite services. The studies focused
on (1) factors related to client satisfaction with special attention to differences
in cultural beliefs; (2) patterns of respite use over time; and (3) strategies
used by providers to develop appropriate and successful respite services. Findings
from the studies are potentially useful for providers and policy makers responsible
for the allocation of limited resources and the development of respite programs. ALZHEIMER’S
DEMONSTRATION PROGRAM
The Alzheimer's Demonstration Grant to States (ADDGS)
Program was authorized through Sections 398, 399, and
399A of the Public
Health Service (PHS) Act (P.L. 78-410), as amended by Public
Law 101-157, Home Health Care and Alzheimer's Disease Amendments
of 1990 and by Public Law 105-379, the Health Professions
Education Partnerships Act of 1998. The goal of this
legislation was
to expand support services for person's with Alzheimer's
Disease and their caregivers. Special attention has been
given to reaching
hard-to-serve and underserved populations. The demonstration
was intended to assist grantees in planning, establishing,
and operating demonstration programs in the following areas:
(1) program development, (2) services delivery, and (3) information
dissemination. Fifteen grantees were selected through two rounds of competitive
requests for proposals. In September of 1992, eleven states (California,
District of Columbia, Florida, Maine, Maryland, Michigan, Montana,
Ohio, Oregon, Puerto Rico, South Carolina) received a three-year
Alzheimer's Demonstration Project grant award. In July of 1993,
four additional states received a demonstration grant (Georgia,
Hawaii, North Carolina, and Washington). The state demonstration
projects were all extended through July 2000.
Unlike many federal programs, the Alzheimer's Demonstration
has been characterized by great local diversity in design and
implementation. Although every grantee has been responsible for
the creation of respite services and outreach to hard-to-reach
populations, each state (or territory) has developed and implemented
a program of outreach and support services that is specific to
the unique needs and resources of their citizens. A second hallmark
of the project has been the development of cooperative partnerships
among public and private organizations to integrate the new programs
and services effectively into existing service environments.
WHAT IS RESPITE?
Respite is a term used to refer to a wide range of services intended
to give temporary relief to families caring for disabled members.
This concept of care developed in the United States as a corollary
of the early 1970s deinstitutionalization movement for developmentally
disabled children and adults (Cohen, 1982). As families assumed
the primary responsibility for the developmentally disabled,
the need for temporary relief from their caregiving responsibilities
created a demand for respite services. Recognition, in the
United States, of the parallel need for relief of family members
caring for frail and disabled elderly did not emerge until
the mid 1980s when formal respite services were initially developed
as demonstration projects.
While there is general consensus that
respite means "an
interval of temporary relief," there is almost no agreement
as to the composition of the services that are to provide this
relief. Respite programs have ranged from volunteers providing
short periods of companionship to short stays in institutions.
Services can be provided in a client's home (in-home services),
in a group or institutional setting (out-of-home service), or
in multiple settings (combination programs). Out-of-home services
include foster homes, adult day-care centers, respite facilities,
nursing homes, and hospitals. The only element common to these
services is the intent to provide a period of relief for caregivers.
Within the three general types of respite settings, there are
a number of possible variations depending upon the level of
care, the types of activities available to participants, and
the duration and frequency of respite episodes. Programs may
vary along a continuum from low to high levels of care, and
respite episodes may range from short periods of a few hours
to long stays of up to six weeks. Clients may be able to use
services as frequently as once or twice a week or as infrequently
as once or twice a year.
In-home Care
The most frequently requested and utilized form of respite
service is in-home respite care provided for short periods,
usually by a home health aide (Montgomery and Kosloski, 1994;
Feinberg and Whitlach, 1998). A sitter/companion, homemaker,
home health aide, or a nurse can provide in-home respite
care. Some programs provide all of these levels of service
while
others may offer only companion or sitter services. Several
public and private initiatives have encouraged the development
of volunteer respite programs. These volunteer programs are
usually confined to the companion level of care (Montgomery
and Hatch, 1987). Most in-home programs provide services
for a period of three to four hours, although some programs
do
offer more extended overnight or weekend services.
Out-of-home Community Care
The most common form of out-of-home respite is provided through
adult day-care centers (Weissert et al., 1990; Montgomery,
1995). Usually respite care is offered in adult day-care
centers on a regularly scheduled basis providing about
four to six
hours of care on each visit. Adult day care centers are
best able to serve clients who need minimal assistance and,
when
they were initially developed, often did not enroll clients
who were incontinent or who wandered (Montgomery and Kosloski,
1995). Additionally, some programs have been specifically
developed for persons with Alzheimer's Disease or other
related disorders
(Lyman et al., 1993, Lindeman et al., 1991; Zawadski and
Van Behren, 1990).
POTENTIAL BENEFITS OF RESPITE SERVICES
Currently there is overwhelming consensus among families and
service providers that respite services are the most desired
and needed support for families caring for persons with Alzheimer’s
disease or other dementias. Many researchers suggest that respite
care can relieve the burden of the caregiving situation and,
perhaps, even allow families to continue to care for relatives
who otherwise might have been institutionalized (Deimling,
1991; Van Werkhooven, 1991; Montgomery and Williams, in press).
Benefits for Families
Respite care is assumed to benefit both caregivers and the older
persons for whom they provide care. The temporary relief from
care tasks that respite services provide may reduce the level
of stress that caregivers experience as a consequence of their
care responsibilities. Indeed, adult day care has been seen to
reduce care-related stress and increase psychological well-being
of caregivers significantly (Zarit et al., 1998). Elders benefit
indirectly from respite when the reduction in caregivers’ stress
and burden leads to enhanced quality of interactions between
the caregiver and the care recipient. Elders attending day care
centers also benefit directly from increased opportunities for
socialization and stimulation.
Reduced Long-term Care Costs
Although, the belief that individual families benefit from respite
programs has been one of the catalysts for the development of
respite programs throughout the country, the major force driving
the development of respite has been the general belief that respite
programs may reduce the costs of long term care by reducing or
delaying the need for more costly forms of care. Indirect support
for this belief has been found in the fact that frail elders,
who have in-home caregivers, are more likely to remain in the
community than are those without such support, regardless of
the elder’s medical condition (Berman et al., 1987; Feinberg
and Whitlach, 1998). In addition, there is mounting evidence
that the caregiver’s capacities and health may be as important
in predicting institutionalization as is the physical condition
of the person receiving the care (McFall and Miller, 1992; Pruchno,
Michaels, and Potashnik, 1990; Haug et al., 1999; Whitlatch et
al., 1997). Direct support for the notion that respite may save
long-term care costs has been relatively sparse. In fact, findings
from early studies of respite programs failed to confirm delays
in nursing home placement (Lawton et al., 1989; Montgomery and
Borgatta, 1989). More recently, investigations that have used
more appropriate methodologies for field studies of respite programs
operating in communities have affirmed an empirical link between
respite care and delayed placement (Montgomery and Kosloski,
1995; Zarit et al., 1998).
LIMITATIONS OF PREVIOUS RESEARCH
To a large extent, any empirical evidence to demonstrate the
psychological and monetary benefits of respite remains sparse
and uneven because respite remains an amorphous notion that
has not been systematically studied. Previous studies have
defined respite in different ways and focused on programs that
offer very different services. In fact, some of the definitions
of respite that have been used, ironically, did not even involve
actual use of the service. Instead, respite was defined as
merely having knowledge of, or access to, a particular service.
For the most part, little attention has been given to the basic
issues of dosage and timing of respite services. Most often,
past evaluations have treated respite use as a dichotomous
variable reflecting "use" versus "non-use" or
even more problematic, "eligibility for use" versus "non-eligibility
of use" (e.g. Lawton, Brody, and Saperstein, 1989; Montgomery
and Borgatta, 1989).
Unlike pharmaceutical studies, which use rigid protocols to
control the content and quantity of a treatment, respite as a
treatment has varied widely in composition and quantity both
among studies and within single studies. Insufficient attention
has been given to describing service interventions or patterns
of service use over time (Lawton, Brody and Saperstein, 1989;
Montgomery and Borgatta, 1989). In the end, the relevance of
past studies to real-life settings (i.e., their external validity)
remains dubious. The question as to whether respite services
ultimately reduce the cost of long-term care remains an important
policy issue. Yet the question remains largely unanswered because
little is truly known about how caregivers opt to use respite
services when they are available. Despite growing evidence that
respite services, indeed, do help families continue in their
caregiving role for a longer period of time (see Montgomery and
Kosloski, 1995), there is little systematic knowledge about long-term
patterns of respite service use in situ.
It is also the case that the failure of researchers to make
a definitive pronouncement about the efficacy of respite has
done little to discourage practitioners and users of respite
services. Respite programs have continued to proliferate. Practitioners
have gone forward without waiting for explicit or even tacit
approval from researchers. And, as a practical matter, answering
the question of cost effectiveness does little to help community-based
service providers to plan and implement their programs. They
have a need for even more basic information about patterns of
respite use. For example, in a real life setting, how much respite
will a family use? Over what period of time do families use respite
and at what level of intensity?
PROJECT GOALS
These lingering questions about utilization patterns and the
benefits of respite programs prompted the extended analyses
of data from the AOA Alzheimer’s Disease Demonstration
Grant to States (ADDGS) program that are reported here. Specifically
three studies were undertaken that capitalize on the unique
qualities of the data that were gathered over a seven year
period from September 1992 to October 1999.
The focus of Study One was to explore
the links between clients’ cultural
characteristics and client satisfaction with respite services.
The central purpose of the study was to identify differences
among cultural groups in their beliefs about long term care and
to determine whether these beliefs were linked with views about
services offered through the ADDGS program. Data were gathered
through interviews conducted with current caregivers. The underlying
assumption of this study was that clients would be more likely
to use those services that they deem appropriate and with which
they were most satisfied. Knowledge of these factors could then
be utilized by service providers to fine-tune their programs
and maximize efficiency.
The primary purpose of Study Two was to identify and document
long-term profiles of respite use among a diverse sample of families
caring for elders with dementia. These profiles are potentially
useful planning tools for policy makers and service providers
responsible for implementing effective and efficient respite
programs.
Study Three used a qualitative design to explore more fully
the ethnic, geographic and familial contexts of service from
the perspective of service providers. Data were gathered through
interviews with key service delivery staff to identify successful
strategies for addressing cultural and/or structural barriers
to service use. The purpose was to provide a more detailed understanding
of the issues confronting providers as they attempted to successfully
develop and implement culturally appropriate support services
for diverse populations.
THIS PROJECT WAS SUPPORTED, IN PART,
BY CONTRACT NUMBER NIH 16541-HHS, FROM THE ADMINISTRATION ON
AGING, DEPARTMENT OF HEALTH AND HUMAN SERVICES, WASHINGTON,
DC 20201. GRANTEES UNDERTAKING PROJECTS UNDER GOVERNMENT SPONSORSHIP
ARE ENCOURAGED TO EXPRESS FREELY THEIR FINDINGS AND CONCLUSIONS.
POINTS OF VIEW OR OPINIONS DO NOT, THEREFORE, NECESSARILY REPRESENT
OFFICIAL ADMINISTRATION ON AGING POLICY.
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Dept. of Health & Human Services
