Core E: Outreach, Recruitment and Education Core

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SUMMARY, Core E The primary goal of the Outreach, Retention and Education Core (OREC) is to identify, recruit, enroll, and retain patients (of certain diagnostic types and racial/ethnic backgrounds) and healthy controls into the Stanford ADRC. We target patients with mild Alzheimer s dementia (AD); amnestic Mild Cognitive Impairment (MCI); mild-to-moderate Parkinson s disease (PD) without MCI or dementia; PD with MCI; dementia with Lewy bodies (DLB) of no greater than mild dementia severity and mild-to-moderate parkinsonism, as well as patients with other disorders as needed to fill specific research needs of the Center; and age-equivalent older adults without cognitive impairment or parkinsonism. We are targeting 20% enrollment of Hispanic/Latino patients from these diagnostic categories over the life of this project. We will begin recruitment of American Indian elders in the third year with their target being 5% of total new enrollment. Fulfillment of this primary aim will be facilitated by use of innovative strategies, in collaboration with academic and community-based partners (e.g., Stanford Geriatric Education Center; Palo Alto Medical Foundation; Alzheimer s Association; American Parkinson Disease Association; and the Indian Health Center of Santa Clara Valley). Our efforts start with the caregiver who will be recruited with the patient, to participate in educational and stress reducing programs that will vary according to diagnosis and /ethnic/linguistic factors. They will be introduced to tools such as Fotonovelas and webnovelas, which are available to assist Hispanic/Latino families to understand the dementias and to deal with caregiver-related stress. In addition, we plan to train Promotoras (indigenous health workers) in case-finding methods and screening for dementia. Additional OREC aims include: to build and strengthen research capacity of our community-based partners; to provide state-of-the-art training to medical students, residents, and Fellows, as well as medical and allied health professionals who work with patients with AD, MCI, PD and other targeted diagnostic categories and families (particularly Hispanic/Latino and American Indian); and to collaborate with other Cores (Admninistrative, Clinical, Neuropathology, and Biostatistics) to further overall Center recruitment and retention goals. Evaluation of our effectiveness at reaching these aims will be guided by a Logic Model approach developed for this Core, which includes measurement of primary, secondary and tertiary outcomes and uses approaches that incorporate both quantitative and qualitative methods. Taken together, these methods and measures will provide rich data for guiding future Core directions. Secondary aims include conducting qualitative research with Hispanic/Latino and American Indian patients and caregivers to understand facilitators and barriers to full participation in the Center, emphasizing culturally - based attitudes towards autopsy/ brain donation and gaining insight to guide future research. In addition, caregiver questionnaire data will be collected to assess depressive symptoms and perceived burden, to understand better how the impact of caregiving may differ across the different groups we are studying.