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  Family Caregivers Often Frustrated With Long Term Care Options

By: Unknown Author

National Pace Association, July 29, 2002

Family Caregivers Often Frustrated With Long Term Care Options, New Study Finds National PACE Association announces results of national focus group study of family caregivers

Alexandria, VA - Families and friends who provide or arrange care in the community for older persons with chronic care needs are often frustrated trying to find available long term care services, according to a study recently released by the National PACE Association (NPA).

"Our study revealed that, for the most part, today's long term care system does not make sense to people trying to access it," said Robert Greenwood, NPA's vice president of public affairs and the staff person responsible for conducting the study. "In addition, we found that there is no single community-based resource or agency that people can turn to for coordinated care."

Results also revealed that family caregivers are often under stress as they attempt to access long term care solutions, and they perceive providers as primarily unhelpful and unfriendly.

"These were important findings," NPA President and CEO Shawn Bloom said. "It suggests that our system of care is failing those who want to care for their family members at home or in the community. The study found that many family members are willing to sacrifice their own quality of life in order to care for their loved ones in the community."

The study was conducted through a series of focus groups in the fall of 2001 in Boston, Indianapolis, Denver and Amarillo. Researchers talked with family caregivers in two cities in which Programs of All-inclusive Care for the Elderly (PACE) coordinate care for older persons, and family caregivers in two cities where such programs do not exist.

Elizabeth Ullman, whose Denver-based public affairs firm conducted the focus groups, said that in all cities focus group participants were emotional, often angry, but eager to participate in a study that would help others in similar situations. "These people feel isolated and overwhelmed. They shared their feelings and experiences in the hope that they could improve the system of care," Ullman said.

NPA conducted this study to determine the effectiveness of PACE programs and determine if communities without PACE have their own systems of coordinated care.

PACE uses interdisciplinary teams of health and home care and other professionals to provide and coordinate care and services for seniors with chronic care needs with an emphasis on helping them live independently in the community for as long as possible. PACE programs receive a capitated payment for each person enrolled in the program, typically from both Medicare and Medicaid, and are free to pool those resources and use them to meet the health care needs of each enrollee in the most effective way possible. Although a person must be "frail" -- certified to need nursing home care -- in order to enroll in PACE, the focus of the program is to help individuals remain in their own communities for as long as possible. Only about seven percent of PACE enrollees reside in a nursing home. Health care and other services are usually provided in a day health center.

Transportation to and from the day health centers is part of the program. Focus group respondents with family members participating in PACE reported a much higher level of satisfaction with the care their family members receive than respondents whose cities do not have PACE.

Family caregivers with loved ones enrolled in PACE report the following key differences in their experiences as compared to those in communities where PACE is not yet available:

Family members value the PACE program's ability to prepare them for what was most likely to occur next in the aging process. In contrast, family caregivers without access to PACE expressed anxiety over what would happen next if their loved one's situation changed and they needed more care.

Family members value the PACE program's ability to identify what services are needed. Many family caregivers feel strongly about doing as much as they can for their aging loved one. They viewed traditional nursing homes as offering an "all or nothing" approach to providing care. PACE programs are able to respond creatively and, with equal importance, differently over time.

Family members valued the PACE program's ability to coordinate care and services among many different providers in the community. In communities where PACE programs did not exist, family caregivers expressed frustration at not knowing what was available.

"This study helped us understand what people value about PACE and how to further adapt our program to meet the needs of family caregivers," Bloom said. "It also showed us that in cities where PACE does not exist, community resources are not sufficient. This is important information for both PACE and for policy makers."

The study was made possible by grants from The Robert Wood Johnson Foundation and the John A Hartford Foundation.

The National PACE Association works to advance the efforts of Programs of All-inclusive Care for the Elderly (PACE) to support, maintain, safeguard and promote the provision of quality, comprehensive and cost-effective health care services for frail older adults.

Contact: Robert Greenwood, 703-535-1522, or Robertg@NPAonline.org


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