Historical Development of the Native American Project

1. Increasing Awareness Of Alzheimer’s Disease Among Arizona Native Americans Filmer Lalio, M.Ed.Native American Outreach CoordinatorHelle Brand, PA; Jan Dougherty, MS, RNRose Ann Barton, Roy Yaari, MD, MASBanner Alzheimer’s InstitutePhoenix, Arizona

2. Historical Development of the Native American Project • The Native American Project began in 2003 at Sun Health Research Institute, Sun City, Arizona • Dr. Marwan Sabbagh (neurologist) and Minnie Jim (Outreach Coordinator) • Goals: • Increase knowledge and awareness of Alzheimer’s and Dementia among the Arizona urban Native American communities and 22 Arizona Indian Tribes • Identify and recruit volunteer Native American elders for screening of normal aging and cognitive evaluations • Outcome: • To improve healthcare for the Native American population • The Native American project transitioned in 2008 to Banner Alzheimer’s Institute, Phoenix, Arizona

3. Outreach and Awareness:Annual Statewide Conference • Sun Health began an annual conference in 2004 • Initial three conferences focused on more traditional medical topics • Two conferences held in urban area; one in rural area • ~100 – 150 health care professionals attended • In 2007, an advisory planning committee expanded the agenda to issues of “living with the disease.” • 300 participants attended; 60% family caregivers/40% professional caregivers • ~60% of the tribes were represented • 2008 5th Annual Conference on Alzheimer’s Disease and Wellness and Dementia be held in Flagstaff, Arizona • 280 participants • A pre-conference ½ day intensive was added for 32 case managers/ community health representatives • 2009 and 2010 conferences held in Tucson and Phoenix

4. Banner Alzheimer’s Institute Native American Program • Background: The incidence of Alzheimer’s disease (and related dementias) among Arizona Native Americans is unknown and many tribes lack vocabulary to describe dementia. The program was developed to understand the incidence and develop a culturally educational materials and programming with the Arizona Indian tribes. • Method: A three prong approach has been developed to serve the 22 tribes in Arizona. Education and awareness, recruit and retain volunteer Native American elders for normal aging and cognitive long term study and an annual conference on Alzheimer’s disease and Dementia in Native Americans.

6. Outreach And Awareness:Meeting Specific Community Needs • Outreach to statewide Urban Native American Programs and Arizona Tribes • Awareness Visits made to Phoenix urban Indian programs, Arizona Indian Education Association Conference, Inter-Tribal Council of Arizona, Maricopa Community Colleges, Arizona universities, Arizona Commission of Indian Affairs, Phoenix Native American Senior Association, Arizona Rural Health Conference • Education provided to: 16 of the 22 Arizona Indian tribes, Zuni Tribe, American Indian Community Health Care Agencies, Indian Health Services

7. Native American Cohort Group • Purpose is to study cognitive aging in normal Native American elders • Original study included 60 elders • Some elders are still participating but some have relocated, did not want to participate and death • Testing included: Physical and neurological examination, Review of medical history, and neuropsychiatric testing

8. Native American Cohort Group • Process: Participants are contacted by phone, written letters or at the senior center • Date of Schedule • Transportation is provided • Elders are met by BAI outreach coordinator • Participants are provided lunch

9. Native American Cohort Group • Challenges: • Staying connected with participants • Giving feedback to them to stay involved with the program • Making sure appointments are coordinated and confirmed with BAI staff and elders/relatives • Continue to follow up and visit the elders at the Native American senior centers or with home visits

10. Outreach and Awareness:Advisory Groups • Established a Native American Advisory Group to provide input on the strategic plan for outreach, education and recruitment of elders into the cohort. • Focus Group to provide feedback on educational and community resources • Members for both the advisory and focus groups are represented from: • Arizona Department of Health Services • Tribal ALTCS Programs • Select Tribes • Intertribal Council of Arizona Elderly Program • Statewide Urban Indian Programs • Arizona Indian Council on Aging • Outcome is to develop of an information booklet specific to Native American population and Alzheimer’s Disease/Dementia • Completed and distributed “Alzheimer’s Disease: Stories from Caregivers” video to 300 community/professional caregivers

11. Program Summary • Outreach • Ongoing outreach efforts with 16 of the 22 Arizona tribes • Collaboration with key stakeholders including DHS, AHCCCS, Tribal Elderly Programs, ITCA, Native Health, Tribal Care giver programs • Education • Educational program provided to community caregivers • 300 caregivers attending annual conference annually • Health care professionals received dementia specific training • Cohort • Continue efforts to maintain cohort while recruiting new participants