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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