Puipui Malu Manatu
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The ASCCC invites the Community to take part in the “Puipui Malu Manatu” research project! A study focused on Alzheimers Disease and Related Dementia.
Alzheimer’s Disease and Related Dementia (ADRD)
The American Samoa Community Cancer Coalition (ASCCC) is committed to aiding and supporting residents of American Samoan with Alzheimer’s disease and related dementia (ADRD). About 5.7 million Americans and more than 35 million individuals worldwide are affected by ADRA. American Indians, Alaskan Natives, Native Hawaiians, and Pacific Islanders are seriously concerned about ADRD and its symptoms, including mild cognitive impairment, since these disorders continue to have a significant influence on their societies.
With our ADRD patients’ healthcare, we want to be able to use culturally-adapted questionnaires in our sample survey to assess their awareness of ADRD; their capacity to interpret health information; their preparedness for research; and their cognitive state. We will also use genetic samples to cross-validate the Gold Standard dementia tests, and then compare the results and information with different racial and ethnic groups.
Our short-term goal is to determine the pattern of ADRD in American Samoa, as well as to study the resilience and risk factors that lead to ADRD.
Our long-term goal is to help fund future research in American Samoa so that ADRD can be diagnosed more quickly and correctly, more people can get care, and ADRD can be treated better.
Though this is the first known application to explore ADRD in American Samoa, plenty of research has been done by ASCCC and other trusted organizations to ensure that this study is effective and efficient. For this reason, the study will be divided into three different stages, all with their own, unique aims. All stages will include the application of culturally adapted instruments and assessments that will be given in-person following CDC and NIH guidelines with the possibility of zoom-facilitated evaluations if needed.
We will begin with data collection – demographic information, medical comorbidities, ADRD health literacy, and intention to screen – ADRD resilience as a measure of brain health, ADRD vulnerability to measure brain disease, cognitive function rating, and an evaluation of executive function, attention, and set-switch cognitive testing. There will also be a computerized assessment to test psychomotor function, visual attention, visual memory, and working memory. At the end of stage one, results will be evaluated by a neurologist and a neuropsychologist to determine cognitive status.
The Gold Standard dementia evaluations will be conducted. The Uniform Data Set from the NIA ALzheimer’s Disease Research Center will also be used for demographic information collection, medical evaluations, and cognitive evaluations. Informant-based rating scales will also be implemented to assess behavior and activities of daily living. At the end of stage two, cognitive status will be determined.
The Gold Standard dementia evaluations will be cross-validated with genetic and plasma framework biomarkers in the probability sample; information will be compared to that available from other racial/ethnic groups.