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Damon Grew Syphers MSPH Western Social Science Association Conference

Damon Grew Syphers MSPH Western Social Science Association Conference April 12, 2013, Denver Colorado. Understanding Alzheimer’s Disease and Dementia in the American Indian Community: A Tribal Community-Based Participatory Approach. Introduction.

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Damon Grew Syphers MSPH Western Social Science Association Conference

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  1. Damon Grew Syphers MSPH Western Social Science Association Conference April 12, 2013, Denver Colorado Understanding Alzheimer’s Disease and Dementia in the American Indian Community: A Tribal Community-Based Participatory Approach

  2. Introduction • Indigenous Research and Tribal Community Based Participatory Research goal is to make a difference in people lives, and is not thought of as an afterthought. It should be a sense of connectedness of the researcher and participants thoughts, views, and perspectives. • “In both critical theory and constructivism, knowledge in itself is not seen as the ultimate goal; rather the goal is the change that this knowledge may help bring about. Both paradigms share the axiology that research is not seen as worthy or ethical if it does not help to improve the reality of research participants” (Wilson, 2008, p. 37)

  3. Prevalence of ADRD • 5.2 millionin the United States (Alzheimer’s Association , 2013) • ADRD is seen as a medical “disease” and treated as such by Western Practitioners

  4. ADRD in the American Indian Community • ADRD is “new” and “emerging” • AD and Dementia has existed in Native communities, however because of the increase in number of cases, there has become more of a priority to address the issue (Henderson and Henderson, 2002) • Unlike Westerners, Natives are still in the process of understanding and formulating their explanatory models of ADRD

  5. AI/AN Demographics • Currently there are 5.2 million AI/AN persons in the U.S. • The number will increase to 8.6 million by 2050 • There are 235,000 AI/AN persons 65+ in the U.S. (U.S. Census Bureau, 2010) • 175 Native American Languages, only 20 are known (Native Language, n.d.) • 564 Federally Recognized Tribes (Federal Register, Oct. 2010)

  6. Risk Factors for ADRD in the Native Population • Smoking • Alcohol Use and Abuse • Sedentary and unhealthy lifestyles giving rise to co-morbid disease (i.e. CVD, Diabetes, and Vascular Dementia) • Limited access to healthcare/specialists • Obesity • Historical/Cultural Trauma

  7. Native Understanding and Views of Dementia • A natural part of aging • Special people • Coming full circle • Sacred time • Journey to next world • More about communicating, relationships, and being in the now

  8. Native and Western Science Converge • Native thought mirrors many aspects of quantum theory. • The essence of quantum theory regarding the traditional Native American worldview and way of being in the world embraces the concept and practice of “the whole” and “being in relationship.” This is the foundation of the traditional way of being among Native Americans. • Physicists have discovered concepts and theories that the Native American worldview has been based on for centuries. For example, the act of observing changes the observed by this interaction. • What this means for Community Based Programs for the western research is the implicit but no less important necessity for building of relationship and accountability. Relationship and accountability “MUST” be replicated in order to “successfully” address ADRD in the Native population.

  9. Current Data Tribal Community Based Participatory Approach • Tribal Based programs have been successful (they engage the researcher and participant) • Tribal Based programs have shown to “honor” indigenous worldviews and systems on knowledge • Tribal Based programs attempt to identify language, the creation of knowledge, and formation of meaning

  10. Challenges to Tribal Programs • Building of trustful relationship • Ability of researcher to do “active” and “reflective” thinking and listening • Little information on practical implementation of ADRD Tribal Programs

  11. Conclusions • No current data or trends that test the efficacy of Tribal programs as they relate to AI/AN understanding of ADRD • Literature still scant (Goins, 2010; Jervis & Manson, 2002) • The efficacy and success of TBCPR have only been conducted in areas such as diabetes, cardiovascular illness, alcohol and substance abuse and breast cancer • Research needs to be conducted on how the efficacy and success of these programs may enhance the Native understanding of ADRD in their communities

  12. Questions & Answers

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