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|FOR IMMEDIATE RELEASE
|Monday, April 28, 2003
||Contact: AoA Press Office
Alzheimer’s Respite Care Enhances Quality of Care
and Quality of Life
Washington, DC----A new study on respite care, referring to support
services providing relief or a break for families from the daily
routines of caregiving for Alzheimer’s patients, shows that
properly designed community-based programs make a significant
difference in the quality of care for patients and in the quality
of life for caregivers.
“As more Baby Boomers are reaching the age of highest risk
for Alzheimer’s disease, according to the new report, the
AoA Alzheimer’s Program is a perfect example of the kinds
of flexible, community-based care that will make a difference
in the lives of older Americans in the future,” said Assistant Secretary for Aging Josefina G. Carbonell.
The findings, published in a new book, A New Look at Community
Based Respite Programs: Utilization, Satisfaction and Development,
by Hayworth Press, is based on an evaluation of the Alzheimer’s
Disease Demonstration Grants to States program funded by the U.S.
Administration on Aging (AoA), part of the U.S. Department of
Health and Human Services.
The study identifies key elements for successful development of
strong respite programs that can become self-sustaining once demonstration
- Community commitment--fostered by forging new partnerships
and expanding public awareness;
- Community creation of new resources; and
- Flexibility in implementation of the federal program.
When designed appropriately, systems that embed respite care
within other home and community-based services made a difference
in the lives of persons with Alzheimer’s and their caregivers.
The study found that most families were highly satisfied with
services received and that the services were used appropriately
when people needed them and were not over utilized. Overall satisfaction
levels were high with approximately 90 percent of clients interviewed
giving high approval scores for questions related to client satisfaction
Major targets of the programs are cultural and ethnic minority,
rural, and traditionally under served populations. The grants
have successfully fostered development of programs in 42 states
and territories and are currently operating in 33 states. The
project has been unique in its success with serving Hispanic,
Black/African American, Asian and Native American and rural families
coping with Alzheimer’s disease. Results from the evaluation
are especially relevant because they provide a comprehensive picture
of respite care use by thousands of caregivers from diverse cultural
groups and regions of the country.
“This report demonstrates the need for a significant investment
in respite care programs,” said Stephen McConnell, Vice
President for Advocacy and Public Policy for the Alzheimer’s
Association. “If we can help patients and their families,
reduce health care costs and utilization of health care services,
then respite programs need to be a key part of any long-term care
“The demonstration program has been distinguished by a
federal commitment to a level of flexibility that affords opportunities
to adapt existing services to meet the unique and changing needs
of the community,” said Rhonda Montgomery, the report’s
key author. “Policies and programs should be developed or
redesigned to include and build awareness of the cultural needs
of communities, to encourage trust among providers and clients
and to ensure longevity of specific programs. Lessons from the
AoA Alzheimer’s Program will help states and communities
redesign their long-term care systems to better focus on home
and community-based services.”
According to Montgomery, the findings offer a variety of implications
for program design and service delivery for future programs:
- When developing a new respite program, it is important to
create a service that complements other services available in
the community in an effort to make a full continuum available.
- Programs that carefully target services will be able
to reduce the number of families that enroll in services for
only brief periods. With the high costs associated with initial
enrollment of clients, these families can use a disproportionate
amount of a program’s resources.
- The hiring and training of competent, caring workers is a
key element in creating a successful respite program. All staff
members should be trained to be sensitive to the diversity of
caregiving situations and to communicate with families in an
open, effective, and clear manner.
- Careful consideration should be given to policy decisions
that place limits on access to respite services. Not all families
benefit from the same amount of respite, and it is possible
for programs to be ineffective because the amount of service
offered is insufficient.
- To plan for future service needs, it is important to recognize
the diversity of caregivers, such as cultural, ethnic, geographic,
socio-economic and relationships between caregivers and Alzheimer’s
patients, and plan for different patterns of service use among
different segments of the caregiving populations.
The U.S. Administration on Aging (AoA) provides leadership, funding
and technical support through Older Americans Act programs to
the national aging network of states, area agencies on aging,
local service providers and aging organization partners. Through
AoA initiatives, services and support such as Alzheimer’s
support, home delivered meals, in-home care, and transportation
are provided to assist in maintaining the dignity and quality
of life of older Americans and their families. More information
about AoA can be found at www.aoa.gov.
The Alzheimer's Association provides a vast array of information
and support services for the four million Americans with Alzheimer's
disease. Through its national network of chapters, it offers a
broad range of programs and services for people with the disease,
their families, and caregivers and represents their interests
on Alzheimer-related issues before federal, state, and local government
and with health and long-term care providers. The largest private
funder of Alzheimer research, the Association has committed nearly
$136 million toward research into the causes, treatment, prevention,
and cure of Alzheimer's. You can reach the Alzheimer's Association
at (800) 272-3900 or on the web at www.alz.org.
Last Modified: 12/31/1600