Community Action Council
The mission of the Community Action Council (CAC) is to strengthen the ability of BU ADC staff and faculty to (1) conduct quality, inclusive research by ensuring adequate representation of African American participants in both the HOPE registry and other studies, (2) meet Education & Outreach Core goals, especially in regards to the needs and concerns of the African American community, and (3) increase community awareness of Alzheimer’s disease (AD) and current treatments and lifestyle factors.
To achieve its mission, the CAC has several objectives:
- Advise the faculty and staff of the BU ADC on participant recruitment and retention in the HOPE research registry — the longitudinal study of normal brain aging and changes associated with Alzheimer’s disease;
- Propose strategies to increase research activity by HOPE registry participants and other people in Alzheimer’s disease research and related research studies;
- Assist the BU ADC staff and faculty to understand barriers to participation in the HOPE registry and other research studies;
- Advise principal investigators conducting research sponsored by the BU ADC regarding specific recruitment strategies to be inclusive of African American participants; and encourage direct interaction between researchers and the community;
- Recommend priorities for educational and outreach activities to foster community awareness of new research, treatment and prevention strategies for Alzheimer’s disease and memory loss; and
- Assist the BU ADC staff to collaborate with relevant community organizations.
The Community Action Council is supported by the Administrative and Education Cores of the BU ADC and is facilitated by Valerie Nolen, staff member in the BU ADC Administrative Core, member of the Massachusetts Alzheimer’s Association Advisory Council, and Board member of the National Brain Health Initiative, Centers for Disease Control and Prevention.
The standing members of the CAC include leaders in the greater Boston African American community, HOPE registry participants, and collaborative partners from Boston community agencies.
Ad hoc members are invited to participate as indicated to present new research studies, discuss recruitment strategies, report research findings, and provide education or feedback on specific initiatives.
CAC Member Responsibilities
- Attend standing meetings scheduled a minimum of three times/year with Center Director Dr. Neil Kowall, Chairperson Ms. Val Nolen, members of the Education Core, and staff members of the Clinical Core responsible for subject recruitment and retention. Additional meetings are scheduled at the discretion of the CAC members. Meetings are hosted by Mr. Alfred Davis at the offices of the Boston Housing Authority.
- Participate directly in recruitment for the HOPE registry by inviting acquaintances to enroll in the HOPE registry; and
- Recommend new members to the CAC, as indicated.
In recognition of the contribution of CAC members to the success of the BU ADC, each standing member is paid an honorarium for participation on the CAC.
The CAC has created several community partnerships to raise awareness of the BU ADC and our work with Alzheimer’s disease among community “gatekeepers,” including the following:
- Multicultural Coalition on Aging
- National Caucus & Center on Black Aged
- Boston Housing Authority (23 housing developments serving 3,300 elderly or disabled residents)
- Elder Healthcare Disparities Coalition of the Urban League
- Harriet Tubman House
- Massachusetts Alzheimer’s Association
- City of Boston Elderly Commission
- Harvard Cooperative Program on Aging at Hebrew SeniorLife .
- BU Institute for Geriatric Social Work
The CAC has assisted with various Center efforts focused on Alzheimer’s safety, lifestyle changes, education, research and retention. The CAC partnerships have actively “opened doors” to make connections for recruitment into ADC-sponsored clinical research projects. These partnerships have led to community presentations for diverse community groups, such as the “60+ Veterans” group, urban and suburban church groups, and senior housing resident organizations.
The CAC has also supported important educational events in the community, such as the annual Alzheimer’s Association’s African American Forum (Michael Kincade, organizer). The forum regularly attracts up to 300 participants, including most CAC members, many of whom volunteer to help serve meals or assist with health fair booths.
Finally, the CAC has also informed research and program evaluation for senior wellness programs that have the potential of improving not only physical health, but also brain health. Based on community partners’ expressed needs, the CAC has provided initial evaluation for an innovative program on exercise and nutrition for African American elders: the Boston Housing Authority’s “Put a Swing in your Life” golf program. This evaluation provided the basis for a successful BU ADC pilot grant proposal (Maureen O’Connor, PI) to conduct a clinical trial of the program measuring key participant outcomes.