Engaging Minorities and Special Populations in Dementia Research: Findings from the Maracaibo Aging Study

Gladys E. Maestre, MD, PhD

University of Zulia, Maracaibo VenezuelaColumbia University, New York USA

Disclosures: None

26th International Conference of Alzheimer´s Disease International, Toronto - Canada

Outline

Why

Strategies

The Maracaibo Aging Study

Lessons

Our ability to improve dementia

care and prevention, is

severely constrained by low

levels of participation of minority

and special populations in

dementia research

Now is the time The Maracaibo Aging Study

It is not the same everywhere

Prevalence of dementia in the

world

Prevalence is not the same by

race/ethnicity

Alzheimer’s Association, 2010, based on Gurland et al., 1999

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

Genetic and environmental heterogeneity

counfounds relative importance of risk

factors

Advantage of research with minority and special populations

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

We can help! Reciprocity is dignifying

3,765 eligible97% 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

Precaution Adoption Process Model Applied to Participation in the Maracaibo Aging Study

Knowledge about MAS

Desire to participat

e

Participation

Belief in the Importance

of MAS

Belief in the ability to

participate

Sustain participati

on

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

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

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

Participation should be easy and rewarding Educational Process

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).

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.

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)

We need you allCommunity

engagement

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)

Psychosocial Stimulation Workshops

Brain Awareness Week

Interdisciplinary Alzheimer´s Disease Simposium13 editions1,300 seats

Free entranceNo pharmaceutical support

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.

Acknowledgments