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Improving Long-term Care for American Indians in Region VIII
Assessing American Indian Long-term Care Needs
Steven P. Wallace, Ph.D., Professor of Public Health and Associate Director of the UCLA Center for Health Policy Research, Los Angeles, CA.
William F. Benson, President, Benson Consulting Group, Silver Spring, MD.
Richard Ludtke, Ph.D., Research Director, National Resource Center on Native American Aging, Center for Rural Health, University of North Dakota School of Medicine and Health Sciences, Grand Forks, ND.
Leander McDonald, Ph.D., Research Analyst, National Resource Center on Native American Aging, Center for Rural Health, University of North Dakota School of Medicine and Health Sciences, Grand Forks, ND.
Margaret Moss, D.S.N., R.N., Assistant Professor, School of Nursing, University of Minnesota, Minneapolis, MN.
Yvonne Jackson, Ph.D., R.D., Director, Office for American Indian, Alaskan Native, and Native Hawaiian Program, Administration on Aging, Washington, DC.
The first step in meeting any group's long-term care needs is to identify the needs of the group. Conducting valid needs assessments can be costly and complex. Fortunately, some readily available information about American Indian long-term care needs across the country exists, as does a project to help tribes identify their individual needs. It is also important when assessing American Indian long-term care needs to remember the importance of culture, family, and friends in delivering care to elders. Finally, according to, Steven Wallace of the UCLA Center for Health Policy Research, the 2000 census has information about the number of people on reservations who reported self-care disabilities (http://factfinder.census.gov/home/aian/index.html).
What types of long-term care needs exist in American Indian communities and how are they being met?
William Benson, President of the Benson Consulting Group, reported that he is conducting a project for the National Indian Council on Aging (NICOA) to assess American Indian long-term care needs across the country and develop a resource center to help improve that care. The Retirement Research Foundation has funded this project. Mr. Benson reported that he had mailed up to three surveys to 236 tribes that were receiving Title VI funding and that one or more people from 109 tribes had responded. The results of this survey indicate the following about the availability of long-term care services in American Indian communities:
- The most likely services to be available in the community were transportation (reported as available in 90 percent of the responding communities) and congregate meals (available in 86 percent of responding communities).
- The least likely services to be available in the community were those for people with Alzheimer's disease (available in 17 percent of responding communities) and adult day care (22 percent).
- Survey respondents were most likely to report that Tribal elders get all the help they need with daily tasks "some of the time" (39 percent). But, an additional 25 percent of responding communities reported that elders got all the help they need "most of the time."
The survey confirmed that Tribal members who entered a nursing home were most likely to enter nursing homes located off reservation. Among the responding communities, 72 percent reported that the off-reservation nursing home was in a local community, and 34 percent reported that it was in a distant community. For comparison, only 13 percent of responding communities reported that elders would enter a nursing home that was located on reservation or in a tribal community. (Elders from a single surveyed community might have multiple nursing home options, thus the overlap in numbers.)
The survey also confirmed that family members are an important source of care for elders. Among the responding communities, 60 percent reported that family members were generally available to assist elders when they need it "some of the time" and 22 percent reported that family members were generally available "most of the time."
Further, the survey confirmed that the informal caregiver system may be stressed. Most of the responding communities (84 percent) reported that usually "few" family members assist elders. Most communities reported either that "most" of the family members providing care to elders could use help in providing care (68 percent) or that "some" family members could use help (26 percent).
Unfortunately, the types of services that responding communities reported would be most helpful to family members providing care (personal care and respite care) were those that were not often reported as available.
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What resources are available to help tribes identify elders' long-term care needs?
Leander McDonald and Richard Ludtke, both of the University of North Dakota's National Resource Center on Native American Aging, reported that they were conducting a project to assist tribes in collecting data they could use to design a long-term care system that met their communities' needs. Drs. McDonald and Ludtke reported that most of their data came from face to face interviews with elders using a standardized survey administered by each tribe that chose to participate in the project. Drs. Ludtke and McDonald provide the survey instrument and technical assistance on conducting the survey to participating tribes. The tribes conduct the data collection and return the completed surveys to the Resource Center where it is analyzed. A statistical profile of each tribe's elders is then provided to the tribe that includes comparisons of the tribe's results to national norms for the general population. All data belongs to the tribe, which decides where it is distributed.
Each participating tribe surveys tribal members, age 55 or older, who live on or around the reservation. Smaller tribes attempt to reach all elders; larger tribes survey a randomly selected sample. The survey collects data from elders about their: general health status, ADLs, IADLs, indicators of chronic disease, indicators of vision and hearing, tobacco and alcohol use, diet and exercise, weight and weight control, and social supports.
Currently, the Resource Center has data from 88 sites. A total of 9,296 elders representing 132 tribes have been interviewed. Fifteen of the tribes in Region VIII (the primary workshop audience) have contributed to the study. Comparative data between the tribes in Region VIII and national norms suggest the following, among other findings:
The data regarding functional limitations (ability to perform ADLs and IADLs) and sources of care may be most pertinent to helping an individual tribe identify the long-term care needs of its elders. The Resource Center data indicate that once American Indians in Region VIII reach age 65 they appear to have fewer functional limitations than the general population. In other words, they are less likely to recognize functional limitations and are more able to take care of themselves than the general population. The numbers not only reflect the need for the development of home and community based services in Tribal communities, but also reflect the American Indian culture of caring for elders at home. This also may be a reflection of the lower life expectancies of elders in Region VIII. American Indians in the Aberdeen Area have a live expectancy of 64.3 years and those is the Billings Area have a life expectancy of 67.0 years.
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What role does culture play in long-term care?
Culture is important to consider when assessing the needs of American Indians for long-term care services, according to Margaret Moss of the University of Minnesota. In her work, Dr. Moss has found that many elders value culture, their ability to carry on tradition, practice their religion, and stay close to family members over receiving services. If long-term care services do not support an elder's ability to continue his or her practices the elder may reject the services. For example, one elder who needed a wheelchair lived in a one-room house with no bathroom and gaps between the floorboards. He would have been more comfortable in better housing, but the elder refused to move from his home because, in another location, he could not perform the traditional ceremonies that were essential to his religion.
Dr. Moss stated that any successful long-term care system for American Indians needs to support elders to:
- Remain in their immediate community.
- Maintain their relationships with family and friends.
- Remain on the sacred grounds that sustain their cultural ties and religion.
- Continue their respected roles within the community.
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Who are informal caregivers and what are their needs?
In addition to his work on needs assessment, Dr. Ludtke has also worked to determine who provides informal care and what support those caregivers need. He reported one study that compared informal caregivers and their needs in North Dakota's American Indian communities to Statewide information on caregivers and their needs. His findings confirmed Ms. Tatsey's observations that informal caregivers are very important to American Indian communities and that they are under strain both because they are more likely than other caregivers to have additional significant time commitments (working full-time, more children at home, etc.) and because the people they care for are less likely to have other formal supports (visiting nurse services, homemaker services, help with shopping, etc.).
As part of its technical assistance to tribes, the federal Administration on Aging (AoA) provides for Family Caregiver Support Programs. As part of this effort, a survey of 68 of these programs was conducted to identify barriers and obstacles to operation and to identify promising practices for implementing and operating a program. Yvonne Jackson, Director of AoA's Office for American Indian, Alaskan Native, and Native Hawaiian Program, reported that, among other things, the survey found the following:
- The most frequently reported training needs for program staff were on a broad array of caregiver skills, such as personal care and home safety, and on developing support groups.
- The most frequently reported barriers to implementing caregiver programs were limited funding, staffing, geographic isolation leaving many caregivers inaccessible, and focusing on the needs of the caregiver versus the elder.
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