Health Status and Care Needs of Older American Indians and Alaska Natives

1. Health Status and Care Needs of Older American Indians and Alaska Natives R. Turner Goins, Ph.D. Public Health Grand Rounds Sycamore Circle Presentation Thank you… Thank you…

2. Sycamore Circle

3. Presentation Outline Demographic profile of American Indians and Alaska Natives (AI/ANs) Health status of AI/AN elders and related long-term care issues Political and cultural considerations with respect to health and research One of the goals of Healthy People 2010 is to reduce health disparities especially those experienced by racial/ethnic minority populations. Public health issues related to AI/ANs is what I intend to share with you today…. <Read slide>One of the goals of Healthy People 2010 is to reduce health disparities especially those experienced by racial/ethnic minority populations. Public health issues related to AI/ANs is what I intend to share with you today…. <Read slide>

4. Trust Responsibility Federal government has a special trust relationship with Indian tribes in accordance with treaties, statutes, Executive Orders, judicial decisions, and other legal instruments. Through law and treaties, the federal government has made a commitment to provide health care free of charge. From the title of my presentation, I refer to the concept of ‘broken trust.’ Which was paid for by relinquishing their land to the federal government. From the title of my presentation, I refer to the concept of ‘broken trust.’ Which was paid for by relinquishing their land to the federal government.

5. The American Indian and Alaska Native Population So, who are American Indians and Alaska Natives?So, who are American Indians and Alaska Natives?

6. Group Heterogeneity No such thing as a national sample of AI/ANs 562 federally recognized tribes Over 200 languages In all 50 states (OK, CA, AZ, NM, AK) 50% rural/live on reservation lands In any discussion of AI/ANs, it is important to first acknowledge the tremendous diversity within this group I believe it is fair to say that there is no such thing as a national sample of AI/ANs… There are 562 federally recognized tribes, speaking over 200 languages with each tribe maintaining their own unique culture and traditions. AI/ANs reside in all 50 states (OK, CA, AZ, NM, AK) Despite the stereotype of Native American’s living on reservations, only about 50% are rural or live on reservation lands 225 non federally recognized tribesIn any discussion of AI/ANs, it is important to first acknowledge the tremendous diversity within this group I believe it is fair to say that there is no such thing as a national sample of AI/ANs… There are 562 federally recognized tribes, speaking over 200 languages with each tribe maintaining their own unique culture and traditions. AI/ANs reside in all 50 states (OK, CA, AZ, NM, AK) Despite the stereotype of Native American’s living on reservations, only about 50% are rural or live on reservation lands 225 non federally recognized tribes

7. Location by Region Approximately 38% of the AI/AN population continue to reside on federal trust lands with the remaining living in off-reservation or urban communities. Approximately 38% of the AI/AN population continue to reside on federal trust lands with the remaining living in off-reservation or urban communities.

8. Enumeration of AI/ANs Confounded by variations in self- identification, isolation, mobility 2.5 million AI/AN people in the U.S. Of those indicating more than one race/ethnicity, there are 4.1 million Enumeration of AI/ANs is confounded by variations in self-identification, isolation, and mobility According to the 2000 Census, approximately 2.5 million people identify solely as AI/AN, and if those indicating more than one ethnic category are included, there are 4.1 million AI/ANs This represents more than twice the number of AI/ANs counted in the 1990 Census, in part because reporting multiple ethnic identities was not allowed until 2000 Enumeration of AI/ANs is confounded by variations in self-identification, isolation, and mobility According to the 2000 Census, approximately 2.5 million people identify solely as AI/AN, and if those indicating more than one ethnic category are included, there are 4.1 million AI/ANs This represents more than twice the number of AI/ANs counted in the 1990 Census, in part because reporting multiple ethnic identities was not allowed until 2000

9. Demographics 0.6% of U.S. adult population are single race/ethnicity AI/ANs 32.5% of AI/AN adults have less than a high school diploma Below poverty level 24% of AI/ANs 18 years or older 27% of AI/ANs 65-74 years 33% of AI/ANs 75 years or older 1) Asian= 3.3%, African American = 11.2%, White = 81.2%, Other = 3.7% According to a recent analysis of the 1999-2003 National Health Interview Survey… 2) African American = 25.2%, White = 15.8%, Asian = 13.9% 3) Poverty African American = 20.9%, Asian = 12.7%, White = 9.0% General pop = 10%, White = 8% General pop = 17%, White = 15%1) Asian= 3.3%, African American = 11.2%, White = 81.2%, Other = 3.7% According to a recent analysis of the 1999-2003 National Health Interview Survey… 2) African American = 25.2%, White = 15.8%, Asian = 13.9% 3) Poverty African American = 20.9%, Asian = 12.7%, White = 9.0% General pop = 10%, White = 8% General pop = 17%, White = 15%

10. Older AI/ANs 8.5% of AI/AN adult population are 65 years or older Most rural of all racial/ethnic groups Long-term residential stability My presentation today will focus on a small but growing segment of the AI/AN population: Older adults White = 17.5%, African American = 11.6%, Asian = 9.6% Older AI/ANs are the most rural of all ethnic older adults with about half living in rural areas, often in small reservation communities. The vast majority who live on a reservation report that they have always lived there and rural residence among AI/ANs has also been found to increase with age. My presentation today will focus on a small but growing segment of the AI/AN population: Older adults White = 17.5%, African American = 11.6%, Asian = 9.6% Older AI/ANs are the most rural of all ethnic older adults with about half living in rural areas, often in small reservation communities. The vast majority who live on a reservation report that they have always lived there and rural residence among AI/ANs has also been found to increase with age.

11. <DESCRIBE MAP><DESCRIBE MAP>

12. Health and Long-Term Care Now I would like to talk about the health status of older AI/ANs and long-term care in Indian Country Now I would like to talk about the health status of older AI/ANs and long-term care in Indian Country

13. Health Status Life expectancy at birth 63.5 years in 1972-74 71.1 years in 1994-96 Top leading causes of death among AI/AN elders Heart disease Cancer Cerebrovascular diseases Diabetes AI/AN life expectancy has shown dramatic increases since the early 1970s. This increase, from 63.5 years in 1972/1974 to 71.1 years in 1994/1996, is largely attributed to the efforts of the IHS to eliminate infectious disease and meet the acute-care needs of AI/ANs. Although AI/AN life expectancy has improved, it is still below the national average. White life expectancy, for example, was 76.8 in 1996 The most notable health problems experienced by older AI/ANs have shifted from infectious to chronic diseases. In fact, the top leading causes of death among AI/AN elders include heart disease, cancer, cerebrovascular diseases, and diabetes Chronic health conditions are currently the major cause of death and disability in the U.S. among all races. One of these conditions, diabetes, was rare among AI/ANs prior to WWII…. AI/AN life expectancy has shown dramatic increases since the early 1970s. This increase, from 63.5 years in 1972/1974 to 71.1 years in 1994/1996, is largely attributed to the efforts of the IHS to eliminate infectious disease and meet the acute-care needs of AI/ANs. Although AI/AN life expectancy has improved, it is still below the national average. White life expectancy, for example, was 76.8 in 1996 The most notable health problems experienced by older AI/ANs have shifted from infectious to chronic diseases. In fact, the top leading causes of death among AI/AN elders include heart disease, cancer, cerebrovascular diseases, and diabetes Chronic health conditions are currently the major cause of death and disability in the U.S. among all races. One of these conditions, diabetes, was rare among AI/ANs prior to WWII….

14. Diabetes Reached pandemic proportions 4-8x more common than in general U.S. population More than 1 in 5 AI/AN elders has diabetes And the reason why I wanted to highlight this particular disease is because things are so different now Currently, AI/AN elders experience some of the highest rates of diabetes in the world and has reached pandemic proportions In general, diabetes is four to eight times more common among AI/ANs than the overall U.S. population (Lee et al., 1995). In addition, more than 1 in 5 older AI/ANs (55+) has diabetes (Denny et al., 2005) In addition to the high prevalence, diabetes is commonly accompanied by other chronic and disabling conditions And the reason why I wanted to highlight this particular disease is because things are so different now Currently, AI/AN elders experience some of the highest rates of diabetes in the world and has reached pandemic proportions In general, diabetes is four to eight times more common among AI/ANs than the overall U.S. population (Lee et al., 1995). In addition, more than 1 in 5 older AI/ANs (55+) has diabetes (Denny et al., 2005) In addition to the high prevalence, diabetes is commonly accompanied by other chronic and disabling conditions

15. Physical Disability Research indicates decline in physical disability Prevalence rates continue to be higher for non-White elders AI/AN elders experience greater rates of physical disability than counterparts This leads to the related topic of physical disability, which is one of the strongest determinants of long-term care use. In general, national data indicate that disability trends among the general US adult population are declining and have been since around the early 1980s as well as a decline in mortality rates. In general, racial/ethnic minority older adults have been found to experience higher rates of physical disability than same-aged Whites Estimates suggest that AI/AN elderly experience some of the highest physical disability rates of any U.S. ethnic groupThis leads to the related topic of physical disability, which is one of the strongest determinants of long-term care use. In general, national data indicate that disability trends among the general US adult population are declining and have been since around the early 1980s as well as a decline in mortality rates. In general, racial/ethnic minority older adults have been found to experience higher rates of physical disability than same-aged Whites Estimates suggest that AI/AN elderly experience some of the highest physical disability rates of any U.S. ethnic group

16. Physical Disability 1992-1996 Medicare Beneficiary Survey (Waidman & Liu, 2000) 30% of AI/AN elders have at least one personal care physical activity limitation 1999-2003 National Health Interview Survey (Barnes, Adams, & Powell-Griner, 2005) 41% of AI/AN adults have a personal care physical activity limitation White = 17%, African American = 25%, Hispanic = 18%, Asian = 14% African American = 31%, White = 31%, Asian = 21% White = 17%, African American = 25%, Hispanic = 18%, Asian = 14% African American = 31%, White = 31%, Asian = 21%

17. Compression of Morbidity The Compression of Morbidity paradigm, which was hypothesized in 1980 by Dr. Fries, noted that most illness was and occurred in later life and suggested that the lifetime burden of illness could be reduced if the onset of chronic illness could be postponed and if this postponement could be greater than increases in life expectancy. The line represents length of life, and the triangles represent lifetime morbidity. The first age represents median age at onset of chronic morbidity and the right age represents median age at death. Longer triangles indicate longer lifetime morbidity and shorter triangles indicate compressed lifetime morbidity. However, if one looks closely at these trends among AI/ANs, it suggest that they are experiencing an expansion rather than a compression of morbidity. For example, an analysis of the 1990 US Census data by Hayward and Heron suggest that AI/ANs’ levels of impairment and length of inactive life are the highest among all ethnic groups, with approximately 50-60% of the later years spent with physical disabilities. The Compression of Morbidity paradigm, which was hypothesized in 1980 by Dr. Fries, noted that most illness was and occurred in later life and suggested that the lifetime burden of illness could be reduced if the onset of chronic illness could be postponed and if this postponement could be greater than increases in life expectancy. The line represents length of life, and the triangles represent lifetime morbidity. The first age represents median age at onset of chronic morbidity and the right age represents median age at death. Longer triangles indicate longer lifetime morbidity and shorter triangles indicate compressed lifetime morbidity. However, if one looks closely at these trends among AI/ANs, it suggest that they are experiencing an expansion rather than a compression of morbidity. For example, an analysis of the 1990 US Census data by Hayward and Heron suggest that AI/ANs’ levels of impairment and length of inactive life are the highest among all ethnic groups, with approximately 50-60% of the later years spent with physical disabilities.

18. <DESCRIBE MAP> TRANSITION: Physical disability is a strong indicators of an individual’s ability to live independently. <DESCRIBE MAP> TRANSITION: Physical disability is a strong indicators of an individual’s ability to live independently.

19. Long-Term Care What is long-term care? Formal Informal Demographic and health profile of AI/ANs indicates a high need for long-term care Definition: Long-term care is defined as a set of health, personal care, and social services provided over an extended period of time to persons who are not able to live independently without help from others. It includes health care, personal care such as bathing or transportation, and social services like finding resources for people who need support for an extended period of time. Includes formal LTC (service-based), and informal support (unpaid help from family and friends – what is commonly referred to as caregivers) Based on what we know of the health status of older AI/ANs, it is clear that this group possess many characteristics indicating a high and growing need for LTC. Definition: Long-term care is defined as a set of health, personal care, and social services provided over an extended period of time to persons who are not able to live independently without help from others. It includes health care, personal care such as bathing or transportation, and social services like finding resources for people who need support for an extended period of time. Includes formal LTC (service-based), and informal support (unpaid help from family and friends – what is commonly referred to as caregivers) Based on what we know of the health status of older AI/ANs, it is clear that this group possess many characteristics indicating a high and growing need for LTC.

20. Federal-Indian Relationship Federal government historically has had a central role in health care delivery Unique sovereign status Internationally recognized concept Power of a people to govern themselves Nation-within-a-nation status Distinct governments What resources are available to AI/ANs to help meet their health and long-term care needs? In order to answer this question, it is necessary to have a brief background on the history of the federal government’s relationship with AI/ANs AI/ANs have a unique political status, which has influenced public health service provision. The most fundamental concept is sovereignty, which is an internationally recognized concept The basic tenant is the power of a people to govern themselves Indian tribes possess a nation-within-a-nation status and the U.S. Constitution recognizes Indian tribes as distinct governments These factors influence the federal-Indian relationship and health service delivery. What resources are available to AI/ANs to help meet their health and long-term care needs? In order to answer this question, it is necessary to have a brief background on the history of the federal government’s relationship with AI/ANs AI/ANs have a unique political status, which has influenced public health service provision. The most fundamental concept is sovereignty, which is an internationally recognized concept The basic tenant is the power of a people to govern themselves Indian tribes possess a nation-within-a-nation status and the U.S. Constitution recognizes Indian tribes as distinct governments These factors influence the federal-Indian relationship and health service delivery.

21. Health Services Not until 1832 did Congress appropriate funds for a health program for all AI/ANs Many tribal leaders believe that the federal responsibility to provide health services is an entitlement Federal government considers funding health services for AI/ANs discretionary

22. Indian Health Service Indian Health Service (IHS) provides free health care to tribally enrolled AI/ANs 61 health centers 36 hospitals Tribes can also receive funds from IHS to operate their own contracting/compacting system IHS is a federal agency in the US DHHS which provides free health care to AI/ANs enrolled in federally recognized tribes. IHS serves more than 1.6 million individuals, principally through the operation of 61 health centers and 36 hospitals. Neither tribes nor IHS provides the full range of medical specialty care, so they contract with the private sector for some services. IHS is a federal agency in the US DHHS which provides free health care to AI/ANs enrolled in federally recognized tribes. IHS serves more than 1.6 million individuals, principally through the operation of 61 health centers and 36 hospitals. Neither tribes nor IHS provides the full range of medical specialty care, so they contract with the private sector for some services.

23. Medicare and Medicaid The Indian Health Care Improvement Act (PL 94-437) provided that IHS could be reimbursed via Medicare and Medicaid However, AI/AN enrollment in these programs has been relatively low compared to other race/ethnic groups P.L. 94-437, Approved September 30, 1976 P.L. 94-437, Approved September 30, 1976

24. Per Capita Spending Congress has never funded AI/AN health care at a level that would provide services comparable to that which other Americans receive. Congress has never funded AI/AN health care at a level that would provide services comparable to that which other Americans receive.

25. Who is Responsible for Long-Term Care? IHS is not authorized in legislation to provide comprehensive long-term care services Other options for older AI/ANs Tribally-funded services Medicaid or state-funded services Administration on Aging Informal caregivers Go without LTC has been identified as the single most critical issue facing AI/ANs, but federally-funded programs are virtually non-existent. …and funds never been appropriated to the IHS for long-term care Currently, tribes and IHS programs that do provide LTC do so through other resources and/or funding such as tribally-funded services, Medicaid- State funded services, and the Administration on Aging, informal caregivers, or go without. It is important to mention the greatest source of long-term care in Indian Country: Friends and family Like all other racial/ethnic groups, family members are the primary caregivers of older AI/ANs. Without formal long-term care services in place, caregivers may be at an elevated risk for poor health outcomes. LTC has been identified as the single most critical issue facing AI/ANs, but federally-funded programs are virtually non-existent. …and funds never been appropriated to the IHS for long-term care Currently, tribes and IHS programs that do provide LTC do so through other resources and/or funding such as tribally-funded services, Medicaid- State funded services, and the Administration on Aging, informal caregivers, or go without. It is important to mention the greatest source of long-term care in Indian Country: Friends and family Like all other racial/ethnic groups, family members are the primary caregivers of older AI/ANs. Without formal long-term care services in place, caregivers may be at an elevated risk for poor health outcomes.

26. Interpretations of Health: Role of Culture In the presentation thus far, I have discussed the demographic and health profile of older AI/ANs, emphasizing that this group has LTC needs which may not be met. AI/ANs have a unique political system which has made the coordination of health and long-term care services in Indian Country more complex. I want to continue today with a discussion of cultural influences on health and well being among older AI/ANs. Specifically, I want to illustrate how AI/AN cultural considerations can affect interpretations of health. In the presentation thus far, I have discussed the demographic and health profile of older AI/ANs, emphasizing that this group has LTC needs which may not be met. AI/ANs have a unique political system which has made the coordination of health and long-term care services in Indian Country more complex. I want to continue today with a discussion of cultural influences on health and well being among older AI/ANs. Specifically, I want to illustrate how AI/AN cultural considerations can affect interpretations of health.

27. Cultural Considerations Passive forbearance (Strong, 1984) Harmony ethic (Loftin, 1983) Tolerated illness (Moss, 2005) Historical grief and trauma (Brave Heart, 1998) The list on this slide refers to some aspects of AI/AN culture which may affect the health interpretations and subsequent care of older AI/ANs So, for example, much of what we know about AI/AN health is based on self report, which may mean that certain health statistics are conservative. The list on this slide refers to some aspects of AI/AN culture which may affect the health interpretations and subsequent care of older AI/ANs So, for example, much of what we know about AI/AN health is based on self report, which may mean that certain health statistics are conservative.

28. Passive Forbearance Caregiving/informal long-term care literature Identified from a qualitative study as a culture-bound coping strategy more common among American Indians Accepting role without attempting to actively control it The first, passive forbearance, has been identified in the caregiving literature and refers to an individual accepting the caregiving role without attempting to actively control this role. It might affect how caregivers appraise stress and could influence assessments of psychological well-being The first, passive forbearance, has been identified in the caregiving literature and refers to an individual accepting the caregiving role without attempting to actively control this role. It might affect how caregivers appraise stress and could influence assessments of psychological well-being

29. Harmony Ethic Assertive individuals considered offensive Applies to aggressive behavior or any form of drawing attention to oneself Ability to endure pain, hardships, frustration No external evidence of discomfort The second, the harmony ethic refers to the ability to endure pain, hardships, and frustration without external evidence of discomfort. The second, the harmony ethic refers to the ability to endure pain, hardships, and frustration without external evidence of discomfort.

30. Tolerated Illness Enduring negative health conditions for reasons of family roles, barriers, or priorities Needs of family/community take precedence over one’s own health needs Culturally incongruent to share health-related problems or difficulties that would create imposition on friends/family The related concept of Tolerated Illness refers to endurance of a negative health condition for reasons of family roles, barriers, or priorities In other words, the needs of family or community take precedence over one’s own personal health needs; one can and should endure poor health. In this respect, it is culturally incongruent to share health-related problems or difficulties that would lead to any imposition on family or friends. The related concept of Tolerated Illness refers to endurance of a negative health condition for reasons of family roles, barriers, or priorities In other words, the needs of family or community take precedence over one’s own personal health needs; one can and should endure poor health. In this respect, it is culturally incongruent to share health-related problems or difficulties that would lead to any imposition on family or friends.

31. Historical Grief and Trauma Historical grief and trauma refers to the intergenerational physical and psychological consequences of a shared history of oppression. American Indians tend to think more in a circular fashion, as opposed to the more linear, European tradition (thus, “The Sacred Hoop” of historical grief and trauma) The purpose of this slide is to illustrate some of the characteristics of this shared history of AI/AN, which includes loss of land, language, and religion; genocide, racism and epidemics; boarding schools; and social problems of poverty, alcoholism, and sexual abuse. This figure also includes the more positive components, such as…. Historical trauma is relevant to consider with respect to AI/AN health because it can influence both physical and psychological well-being Psychological consequences identified by Brave Heart and colleagues run the gamut of those associated with post traumatic stress disorder to symptoms of unresolved grief In terms of physical consequences, some researchers have speculated that historical trauma could manifest in the same way as other chronic stressors TRANSITION: Before we can make strides to improve health and access to LTC, we must first improve our understanding which can be done through culturally sensitive research…Historical grief and trauma refers to the intergenerational physical and psychological consequences of a shared history of oppression. American Indians tend to think more in a circular fashion, as opposed to the more linear, European tradition (thus, “The Sacred Hoop” of historical grief and trauma) The purpose of this slide is to illustrate some of the characteristics of this shared history of AI/AN, which includes loss of land, language, and religion; genocide, racism and epidemics; boarding schools; and social problems of poverty, alcoholism, and sexual abuse. This figure also includes the more positive components, such as…. Historical trauma is relevant to consider with respect to AI/AN health because it can influence both physical and psychological well-being Psychological consequences identified by Brave Heart and colleagues run the gamut of those associated with post traumatic stress disorder to symptoms of unresolved grief In terms of physical consequences, some researchers have speculated that historical trauma could manifest in the same way as other chronic stressors TRANSITION: Before we can make strides to improve health and access to LTC, we must first improve our understanding which can be done through culturally sensitive research…

32. Research Issues

33. Research Issues Many standard assessments have not been validated with AI/ANs Consent forms can be misleading “Consent to Participate in Clinical Research” I’m going to spend the last segment of my presentation briefly touching on issues related to conducting research with AI/ANs… Many standard instruments have not been evaluated in Native populations For example, with the Center for Epidemiologic Studies – Depression scale (CES-D) “I felt that I was just as good as other people” Found that the total CES-D scale indicated more than 2x likely to have depressive symptoms Important to note that if a measure has been validated with one particular tribe/village, that does not necessarily mean it is a valid measure with another tribe/village. Also, with the required information and consent forms “Consent to Participate in Clinical Research” – language required certain university IRBs Many potential study participants believed they were being asked to participate in a medical procedure instead of an interviewI’m going to spend the last segment of my presentation briefly touching on issues related to conducting research with AI/ANs… Many standard instruments have not been evaluated in Native populations For example, with the Center for Epidemiologic Studies – Depression scale (CES-D) “I felt that I was just as good as other people” Found that the total CES-D scale indicated more than 2x likely to have depressive symptoms Important to note that if a measure has been validated with one particular tribe/village, that does not necessarily mean it is a valid measure with another tribe/village. Also, with the required information and consent forms “Consent to Participate in Clinical Research” – language required certain university IRBs Many potential study participants believed they were being asked to participate in a medical procedure instead of an interview

34. Research Issues Costs of “business as usual” Political revolution – exerting authority as domestic dependent sovereignties Show relevance to local priorities Reserve the right to review and approve all publications prior to dissemination Claim ownership of data generated by these studies Most investigators are unprepared to address the demands of health research in AI/AN communities. Costs of “business as usual” with respect to research in this special population have proven to be enormous. There has been a dramatic political revolution in Indian Country – exerting their authority as domestic dependent sovereignties, many AI/AN communities have developed agencies that function not only as IRBs but also control access to the entire population within their jurisdiction. They demand that proposed research…. Most investigators are unprepared to address the demands of health research in AI/AN communities. Costs of “business as usual” with respect to research in this special population have proven to be enormous. There has been a dramatic political revolution in Indian Country – exerting their authority as domestic dependent sovereignties, many AI/AN communities have developed agencies that function not only as IRBs but also control access to the entire population within their jurisdiction.

35. Cultural Competence Understand community concerns and local histories Involve community gatekeepers and leaders Consider the role of culture and traditions Make yourself a positive force

36. Summary Develop an understanding of the demography Increase knowledge of major health problems and long-term care issues Familiarity with the service systems available for health services Develop an understanding of political and cultural considerations with respect to health care and research

37. Contact Information R. Turner Goins West Virginia University Department of Community Medicine & Center on Aging PO Box 9127 Morgantown, WV 26506 Phone: (304) 293-3129 Email: rgoins@hsc.wvu.edu