Gladys E. Maestre, MD, PhD University of Zulia, Maracaibo Venezuela

1. Engaging Minorities and Special Populations in Dementia Research: Findings from the Maracaibo Aging Study • Gladys E. Maestre, MD, PhD • University of Zulia, Maracaibo Venezuela • Columbia University, New York USA 26th International Conference of Alzheimer´s Disease International, Toronto - Canada Disclosures: None

2. Outline • Why • Strategies • The Maracaibo Aging Study • Lessons

3. Our ability to improve dementia care and prevention, is severely constrained by low levels of participation of minority and special populations in dementia research

4. Now is the time • The Maracaibo Aging Study

5. Prevalence of dementia in the world • It is not the same everywhere

6. Prevalence is not the same by race/ethnicity • Alzheimer’s Association, 2010, based on Gurland et al., 1999

7. Risk Factors • Low education Head injury Family history Diet HIgh blood pressure Physical activity • Social net Depression Stroke Diabetes Obesity Smoking Income Down syndrome Alcohol consumption Cardiovascular procedures Genes

8. Genetic and environmental heterogeneity counfounds relative importance of risk factors • Advantage of research with minority and special populations

9. Why minorities and special populations? • Less genetic and environmental heterogeneity will increase statistical power • Subgroup-specific data are needed when ethnicity/culture/genetic background could modify the outcome • To discern applicability of results to diverse groups • Higher burden of disease

10. We can help! • Reciprocity is dignifying

15. 3,765 eligible 97% contacted, 1998 Refusal to be informed about the study 0 Refusal to be assessed at baseline 26 % 2,438 followed until now (more than 14,000 py) Retention rate 89% in 12y Annual cost 10 USD pp, 93% covered by community sources

16. Precaution Adoption Process Model Applied to Participation in the Maracaibo Aging Study Desire to participate Participation Knowledge about MAS Belief in the Importance of MAS Belief in the ability to participate Sustain participation

17. Listening to those we want to engage • Decisions that people have to make in order to participate • Who and/or what influences those decisions • What kind of messages will get a response • What costs will they trade for what benefits • The forms of messages that will get attention

18. Understanding motivations to participate • Perceived Personal Benefit • Enhance medical attention • Reassurance on health decisions • Access to laboratory tests and specialized exams • Enriching personal life: learning new things, meeting new people • Empowerment • Perceived Benefit to Others • To benefit future younger family members • Moral duty • Community spirit • Desirability

19. Understanding motivations to NOT participate • Perceived Personal Disbenefits • Inconvenience • Stigmatization • Mistrust (privacy issues) • Other • Family member does not agree • Scepticism about the value of effort • Negative previous experiences

20. Participation should be easy and rewarding • Educational Process

21. Social Marketting Tools and Strategies • Collected information from those who benefit and contribute: community residents, leaders, service organizations • Analyze behaviors and environmental factors: focus groups, observation • Engagement of partners: neighbors organizations, health care professionals, professionals in the area, religious groups, media, University community, schools, groceries associations • Clear goals for each step: indicators • Identify and prioritize core components of campaign: target (poor, low education, residing in Santa Lucia), message (we need to know why some age healthy), sources (community residents influencial), channels (media, community assemblies, word of mouth).

22. Recruitment • Pasive • Flyers, advertisements, mailings, public service announcements, not for prompting prospectives participants to contact project staff but to prepare them for the visit • Active • Visits: First, a community health worker providing information and exploring willingness. Second, a staff member to educate about the project and to obtain informed consent.

23. Retention • Communication of appreciation for investment of time and effort (verbal recognition, certificates of participation, letters of gratitude). • Support during hospitalizations and end of life. • Transport provided or evaluations at home if too difficult • Physical incentive (a bag to keep health information) • Maintenance of contact (birthday card, invitation to events, holidays cards or phone calls) • Minimal field workers turnover • Multigenerational approaches (school visits, health fairs, school of caregivers, twitter, facebook, blog, web page) • Feed back of results (Simposium, newsletters, printed materials)

24. Community engagement • We need you all

25. New Services • Memory clinic, open to the west of Venezuela • Training site for University programs (gerontology, nursing, medicine, social work,psychology and addiction) • Free clinic for elderly residing in the community (volunteers) • School of caregivers (volunteers) • Cognitive stimulation program (volunteers) • Physical stimulation program and Lohan Chi Kung (volunteers)

27. Psychosocial Stimulation Workshops

29. Brain Awareness Week

30. Interdisciplinary Alzheimer´s Disease Simposium 13 editions 1,300 seats Free entrance No pharmaceutical support

31. Key factors in succesfully engaging with minorities and special populations • Taking a multifaceted and multilevel approach that address major issues rather than those which are directly relevant to each partciipant. • Community engagement is critical, for trust, logistic and financial reasons. • Tools of social marketting are essential to reach those “hard to reach” but person to person contact is the most valuable tool • New services for patients, caregivers but also for early detection • Keeping the community informed about research advances is essential • Dedicated channels of communication.

32. Acknowledgments