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LTSS Research

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A woman at Zuni Adult Day Care, part of the network of elder services available at Pueblo of Zuni, participates in one of the program's daily activities.
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This page includes reports, fact sheets, web links, and other resources that focus on research related to LTSS needs and successes in Indian Country.

An Introduction to LTSS

Older American Indians and Alaska Natives are a rapidly growing population group.

  • According to the Administration on Aging, the number of AI/AN people 65 and older is projected to increase by nearly 75% between 2010 and 2020.
  • While tribes may understand elderhood as beginning at a different age, this website defines "older adults" as age 65 and older, because Medicare eligibility begins at age 65 and because many national statistics (like the Census) use age 65 as a cutoff.

Overall, AI/AN populations experience some of the highest rates of chronic disease and disability in the U.S1. Due to the increase in the AI/AN older population and the high level of disability within this population and among younger people, tribal communities are experiencing an increased need for long-term services and supports for their elders and tribal members with disabilities.

1Goins, R. T., Bogart, A., & Roubideaux, Y. (2010). Service Provider Perceptions of Long-Term Care Access in American Indian and Alaska Native Communities. Journal of Health Care for the Poor and Underserved, 21(4), 1340-1351.

Caregiver Support

LTSS Research: Annotated Literature Review, Caregiver Support in Indian Country (PDF, 40 pages) – an annotated literature review that discusses the challenges of caregiver support in American Indian and Alaska Native communities, available support for caregivers, and recommendations to overcome barriers. The document includes a glossary of terms, a 4-page executive summary and 29 research sources.

Program Profiles

Fact sheets describe each program and present findings on successes and innovations, funding, lessons learned, and how each program addresses culture in providing caregiver support services.

Elder Abuse Prevention

Program Profiles

These fact sheets offer program descriptions and present each program's strategies for success, funding, lessons learned, and ways of attending to cultural considerations.

Emerging LTSS Issues in Indian Country

Emerging LTSS Issues in Indian Country: Executive Summary (PDF, 3p) – a summary document that highlights three LTSS topic and their related issues within Indian Country—LTSS funding for HCBS, Adult Family Homes, and Alzheimer’s and Dementia.

  • Emerging LTSS Issues in Indian Country: Rebalancing LTSS Funding for HCBS (PDF, 16p) – a paper that provides a snapshot of the current information on efforts to rebalance LTSS funding for HCBS in Indian Country that breaks down Medicaid funding information, and provides insights from two current programs.
  • Emerging LTSS Issues in Indian Country: Adult Family Homes (PDF, 10p) – a paper that provides a snapshot of a HCBS care option, Adult Family Homes. A care option that offers a viable solution for tribes that want to provide culturally appropriate, affordable, long-term care to elders or others in need of such services that keeps tribal members in the community.
  • Emerging LTSS Issues in Indian Country: Alzheimer’s and Dementia (PDF, 10p) – a paper that provides a snapshot of current information about Alzheimer’s disease and dementia in Indian Country, barriers preventing diagnosis, and recommendations for tribal communities to take proactive measures to address challenges.
  • Emerging LTSS issues in Indian Country: Caregiver Training (PDF, 14p) – a paper that provides a snapshot of the existing literature on caregiver training in Indian Country. The paper addresses need for caregiver training, the evaluation of caregiver training programs, funding and recommendations that may help tribal programs and tribal communities improve and increase caregiver training.
  • Emerging LTSS issues in Indian Country: Disability and Housing (PDF, PDF 15p) – a paper that provides a snapshot of housing programs in tribal communities. The paper addresses the barriers that AI/ANs with disabilities face, funding sources for programs and promising research focused on culturally relevant housing solutions for AI/ANs with disabilities.
  • Emerging LTSS issues in Indian Country: Assisted Living (PDF, 17p) – a paper that highlights stories from three tribal communities and their process of developing assisted living facilities, their challenges, successes and lessons learned.

Funding

Hospice and Palliative Care

  • Hospice and Palliative Care in Indian Country (PDF, 2 pages)
  • Fact sheet that analyzes, as a group, the four hospice programs that serve Indian Country
  • Hospice in Indian Country: Literature Review (PDF, 37 pages)
  • Literature review paper that defines hospice and palliative care and explains access, use, and cultural issues for these care types for AI/AN populations. A 5-page report overviews relevant issues, and the document gives detailed summaries for 25 additional research sources.
  • LTSS Research: Hospice in Indian Country (PDF, 11 pages)
  • Literature review paper that reviews recent research underscoring the need to address barriers identified in the 2014 literature review by the Centers for Medicare and Medicaid Services, through infusing culture, and values into end-of-life-care for AI/AN populations. A 11-page report overviews the barriers, and recommendations related to providing end-of-life care.
  • Caring for those nearing end-of-life: Providing compassion and dignity for our elders (PDF)
  • Infographic giving a clear and colorful overview of hospice and palliative care, and needs and strategies for providing it in tribal communities

Program Profiles

These fact sheets describe each program and present their successes, innovations, funding, lessons learned, and approaches to incorporation of culture in end-of-life care.

LTSS for Native Veterans

  • LTSS Research: LTSS for Native Veterans (PDF, 38 pages)
  • A literature review that provides an overview of the LTSS need for Native veterans, barriers to care, efforts by the Indian Health Service and the U.S. Department of Veterans Affairs, and recommendations to improve care. The document includes 25 summaries of research sources.

Program Profiles

These fact sheets describe programs that offer services to Native Veterans and include success, innovations, funding, and lessons learned

Nursing Homes

  • Nursing Homes in Indian Country Report (PDF, 14 pages)
  • Overview of tribally operated nursing home facilities, including a look at facility ratings on the Medicare Nursing Home Compare website

LTSS Videos and Program Examples

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Program profiles provide real-life examples of how tribes are successfully implementing LTSS in their communities. Explore the program examples section to learn about the diverse tribal programs currently in operation.

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Additional program profiles are also presented as brief videos. The videos page shares insights from the people who have planned and implemented these current tribal and urban LTSS programs.



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