Recruitment and Engagement Core

RECRUITMENT AND ENGAGEMENT CORE: ABSTRACT Many American Indian, Alaska Native (AI/AN), and Native Hawaiian and Pacific Islander (NHPI) communities view academic research with skepticism, mistrust, or even hostility, in part because research has historically been done in or on communities rather than with community participation. As a result, community-informed

participatory approaches have become the model of choice for research with AI/ANs and NHPIs, because their core values include equitable distribution of power and resources among partners and mutual respect for the knowledge that partners offer. In 2013, the National Institute on Aging convened a workshop to articulate goals

for research on Alzheimer’s disease and related dementias as part of the National Plan to Address Alzheimer's Disease. A priority was the inclusion of disparity populations in research. However, AI/ANs and NHPIs have been largely neglected by this work, despite striking increases in life expectancy among Native elders. For

example, the 32 current Alzheimer’s Disease Centers have recruited only 110 AI/ANs and 19 NHPIs in the last 7-years (average of 1 person every 2-years per center), despite existing recommendations to increase diversity. The Recruitment and Engagement Core will apply strategies recommended by the National Institutes on Aging

for recruitment and retention in Alzheimer’s disease and related dementias (ADRD) research,17 with a commitment to innovative as well as traditional methods to engage communities. These strategies include a network of 8 Satellite Centers led by AI/AN and NHPI investigators representing a diverse cross-section of

academic and community partners, which will extend the national impact of our work beyond our Research Projects. These Centers will assess research readiness and through novel “Brain Train” hands-on workshops, establish an IRB-approved registry of AI/ANs and NHPIs who wish to participate in ADRD research. Our Specific

Aims are to: 1) Monitor and evaluate recruitment and retention in Research Projects by applying innovative strategies, and identifying best practices for ADRD outreach and engagement; 2) Assess community research readiness and position AI/AN and NHPI sites for future ADRD studies through a network of Satellite Centers and

“Brain Train” ADRD workshops; 3) Build an IRB-approved research and information registry of AI/ANs and NHPIs interested in ADRD research; and 4) Create educational and recruitment materials to increase awareness of ADRD for use by the Research Projects in local communities and national venues. This Core will use strategies

designed to stoke interest in research and treatment advances, both in communities participating in the Research Projects and in others and ensure stakeholder involvement in biospecimen collection and dissemination of results. The AI/AN population is growing 3 times faster than the US general population, such that the number of

AI/ANs aged 65+ is expected to triple by 2050, while the number of those aged 85+ will increase 7-fold.19 Corresponding increases are expected for NHPIs. Thus it is imperative to engage the rapidly burgeoning population of Native elders in ADRD research.