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PRESS RELEASE

FOR IMMEDIATE RELEASE  
Monday, April 28, 2003 Contact: AoA Press Office
(202) 401-4541

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 dollars end:

  • 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 with services.

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 solution.”

“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.