While global aging represents a triumph of medical, social, and economic advances over disease, it also presents tremendous challenges.
To raise awareness of global aging issues and the importance of cross-national scientific research and policy discourse, the National Institute on Aging (NIA), part of the National Institutes of Health at the U.S. Department of Health and Human Services, with the Department of State, recently published the booklet, Why Population Aging Matters: A Global Perspective. This booklet served as background for the March 2007 Summit on Global Aging, hosted by the State Department with collaboration of the NIA.
The compendium identifies nine trends in population aging, using data from the United Nations, U.S. Census Bureau, the Statistical Office of the European Communities, regional surveys, and scientific journals. The trends are:
The unprecedented societal changes outlined in Why Population Aging Matters require governments and private-sector organizations to reevaluate and reform systems for health care, housing, social security, work and retirement, and caregiving, participants at the Summit noted. They also pointed out the need to identify ways to better alleviate the burden of disease and disability.
At NIA, a number of efforts to address population changes as a global concern are underway. The Institute has catalyzed cross-national research, sponsored collaborative international projects, and disseminated findings about age-related conditions and concerns affecting people worldwide. NIA’s Behavioral and Social Research (BSR) Program focuses on understanding the demography and economics of aging and the patterns and consequences of population aging worldwide. Initiatives supported by NIA, in both the United States and abroad, seek to better understand the genetic, biological, and environmental underpinnings of age-related changes and specific diseases associated with growing older, such as Alzheimer’s disease.
To view or download Why Population Aging Matters: A Global Perspective and to learn more about NIA’s demography research program in this area, please visit:www.nia.nih.gov/research/publication/why-population-aging-matters-global-perspective .
In 1945, Margaret Hawkins and Sarah Scott, leaders in the Philadelphia community, did something remarkable. Gathering seven of their friends together they created The Links, Incorporated, a unique volunteer organization for Black women. The Links, Inc. was designed to “respond to the needs and aspirations of Black women to provide service to the community [with its] three-fold aim— civic, educational, and cultural,” according to its website.
Clearly, Hawkins and Scott tapped into a great need because today The Links, Inc. is an international organization with more than 12,000 members and 274 chapters grouped in four geographic areas. It remains true to the original mission, seeking ways for women of color to support the community.
Project ALERT (Alzheimer’s Links to Education, Research & Treatment) is a new program developed by the Western Area Links. The Project educates African Americans and other people of color about the high prevalence of Alzheimer’s disease (AD) in their communities, teaches them how to recognize signs of AD and what to do if someone shows signs of the disease, and provides information about additional AD resources. Project ALERT also has a special interest in recruiting family members of people who have late-onset AD for a clinical trial about the genetics of AD.
The innovative project was started by Roslyn Fitch and Sandra Dorsey Malone, two Links, Inc. leaders. For Fitch it was an instance of being at the right place at the right time. She explains, “I work at The University of Texas Southwestern Medical Center. Peggy Higgins is the director of the Education Core of the Alzheimer’s Disease Center there and was struggling to build a relationship with the African American community. When she found out that I was President of the Mid-Cities Texas Chapter of The Links, Inc., she asked if I could help. I first thought about how a group of women might embrace an AD education initiative. So, we invited Sandra, since she is Western Area Director of The Links, Inc., to discuss if this might be an endeavor that members of the 54 Chapters in her area could support. The project was overwhelmingly endorsed.”
For Higgins, Project ALERT is an example of what can be achieved by successful community partnerships and networking, “Fitch and Malone are really powerful, influential people in their communities…They can make things happen. I’m so lucky to have them on board. Other Alzheimer’s Disease Centers are excited, too. When they learned about what we are doing, they wanted to join in on the partnership.” Eleven of 31 NIA sponsored Alzheimer’s Disease Centers, including UT Southwestern’s led by Dr. Roger Rosenberg, now serve as an AD resource for Links chapters.
Higgins says that AD is a “silent epidemic” in the African American community; “it’s still not out in the open.” It’s one reason why estimates of prevalence are hard to come by. Estimates vary widely. However, a 2002 Alzheimer’s Association report suggests the number of African Americans with AD will grow with the rapid increase in the older population, as age is a key risk factor for AD in all racial and ethnic groups.
“When I heard the statistics and the projected drastic increase, especially with people of color, I felt that this was an important topic to address,” recalls Malone. AD has personal relevance for Fitch and Malone—each has family members with the disease. After Malone’s brother was diagnosed, she and her siblings participated in a clinical trial to determine their risk for AD. She was eager to promote awareness of both AD and clinical trials.
Fitch was equally excited about the prospect of a program. “We have mothers, fathers, sisters, brothers, aunts, uncles, nieces, nephews, grandparents with AD who don’t know where to go. And, then there’s the Medical Center with millions of dollars for their clinical research and looking for the best places to find participants. I’m in a position to help everyone get access to what they need,” explains Fitch.
Malone with Fitch set out to develop a program to educate African Americans about AD and clinical trials using materials created by Higgins and her colleagues. They also wanted to identify places to best reach their audience such as professional associations, community centers, fraternities/ sororities, social service organizations, educational facilities, and churches. “I feel that people of color will be more receptive to hearing about these topics from Links members than from outsiders who they do not know or trust,” Malone says.
The result of their work thus far is a train-the trainer program that teaches Links members how to tailor an education and outreach program on clinical research and AD to their unique community. The program also has a medical overview of AD, which was provided by Dr. Richard King, an Heir-O-Link (child of a Link) and neurologist at UT Southwestern.
In April, over half of the chapters in the Western Area met for the training program. NIA’s Dr. J Taylor Harden, Assistant to the Director for Special Populations spoke at the meeting about outreach. “Project ALERT is a wonderful example of what can be accomplished for minority populations when different groups work collaboratively,” says Harden.
A 30-minute educational DVD using material from the original training session is in development. By September 2007, all 54 Links chapters in the Western area will begin to implement their AD-awareness programs. The creators hope that AD and clinical research education will be adopted as a signature project by all of The Links, Inc. “This has been such a tremendous experience, and I’m just thankful…It’s a wonderful thing to be able to give back to the community,” expresses Fitch.
For more information on about the Alzheimer’s Disease Genetics Study please visit http://clinicaltrials.gov/ct/show/NCT00064870 .
To learn more about The Links, Inc., please visit http://www.linksinc.org/ .
Dr. Eliseo Pérez-Stable’s goals are about more than personal accomplishments. As a physician and researcher, he is dedicated to improving the lives of others by tackling cancer disparities in the Latino community. He has developed effective culturally sensitive programs to promote smoking cessation and conduct cancer prevention screenings. These programs, originally intended for local Latino community in San Francisco, have been adopted across the U.S.
Born in Cuba, Pérez-Stable immigrated to the United States with his grandparents when he was eight years old. Adjusting to his new home was not easy. He struggled to learn English, often felt alienated by his peers, and was separated a majority of the year from most of his family. As a young adult, Pérez-Stable became drawn to the social justice movement of the late 1960s and early 1970s, specifically the political activism in Latin America, and his desire to address the health problems of underserved communities emerged. “I pursued medicine to help those individuals most in need and while studying [at the University of Miami] realized that maybe academics and research would be how I could make a difference for their health,” he recalls.
Influences of Pérez-Stable’s Latino background can be seen in his research. In his third year of residency at University of California, San Francisco (UCSF), Pérez-Stable began developing an expertise in Latino health care. He gave a presentation about how effective communication with Latino patients required more than language proficiency but also hinged on cultural awareness and sensitivity. As Principal Investigator of three ongoing and seven previous NIH grants, Pérez-Stable continues to build on his under-standing of how Latino culture influences effective health communication. Specifically, he is exploring Latin American beliefs, attitudes, and behaviors toward disease prevention and health promotion.
As the director of the UCSF Center for Aging in Diverse Communities (CADC), Pérez-Stable’s research portfolio includes a wide range of minority aging health issues. The CADC also conducts research on ways to improve quantitative surveys using qualitative methods. “People react differently to questions about their health beliefs, attitudes, and behaviors. The way you ask the question can determine the value of the response. You can’t just use a generic questionnaire—you need to know how a particular group views a health problem. You need to know the right questions to ask. You need to create health materials that the audience can relate to. For that reason, we used qualitative methods to develop and pre-test quantitative surveys,” says Pérez-Stable. The CADC uses this method when developing measurement instruments for patients to report on their interactions with their clinicians. The goal, Pérez-Stable explains, is, “to arrive at a universal tool that works psychometrically and conceptually in English, Spanish, and Chinese and would be appropriate for different groups, including Blacks, Whites, Latinos, and Asians.”
Pérez-Stable has also developed community based interventions based on such increased understanding of how different groups view health. For example, materials to help people quit smoking traditionally focused on how stopping can benefit the individual. Pérez-Stable’s research demonstrated that Latino culture puts a high value on interpersonal relationships. “While [non-Latinos] may acknowledge each other with a wave or a handshake, many Latino men greet others with an abrazo (embrace),” he explains. “They are very connected to their community.” It would follow then, he says, that Latinos may be more influenced by how smoking negatively impacts their interactions with friends (for example smelling bad to a friend when hugging hello), jeopardizes the health of people around them, and possibly shortens the time they will have with their loved ones. He was right. The Guia para Dejar de Fumar (Guide to Smoking Cessation) is so popular that it has been revised and published four times by the National Cancer Institute and is widely distributed through their website.
Among his many professional roles (doctor, researcher, professor, director), Pérez-Stable says one of his most cherished roles is that of mentor. With his wealth of experience, Pérez-Stable has a lot to share. “Around 1990, after becoming an Associate Professor of Medicine at UCSF, a fellow faculty member at Harvard said to me, ‘now you have a new role, to pull people up.’ I took it to heart,” he recalls. Through the CADC, he and colleagues have mentored (and funded) 50 emerging minority researchers. “As a mentor I try to help others ach eve their professional goals and support the development of new investigators,” he says.
Pérez-Stable’s views of mentorship have been shaped by mentors he’s had throughout his life and career. “Phil Hopewell, M.D. and Gary Slutkin, M.D. as faculty in the Department of Medicine at UCSF helped me get started in research, studying tuberculosis. Steve Schroeder, M.D., professor of medicine at UCSF, was my first boss and still continues to provide guidance. Ricardo Muñoz, Ph.D., professor of psychology at UCSF, is a peer mentor and we continue to work together. Another mentor, Gene Washington, M.D., currently Executive Vice Chancellor at UCSF, and I founded the UCSF research center for minority populations. They all still provide me with perspective and invaluable advice. Each of these men has taught me that being unselfish, dedicating time, and accepting diversity in approaches and goals are essential qualities of being a mentor.” In addition, Pérez-Stable believes in balance between work and life outside of the ffice. He travels to Argentina annually with his wife of 14 years and their two sons. He also enjoys sports, literature, film, the arts, cats, and hiking.
Pérez-Stable’s leadership and influence on minority health research takes many forms. Currently, he is Director of the UCSF Center for Aging in Diverse Communities, an NIA-supported esource Center for Minority Aging Research; Director of UCSF Medical Effectiveness Research Center for Diverse Populations; and Professor of Medicine. He was a former Kaiser Family Foundation Faculty Scholar and has authored over 150 research articles. Pérez-Stable’s work developing minority investigators and promoting research in minority health continues, “I look back at what I’ve done so far—I’ve been able to blend medicine, social science, and social justice, closing the gaps created by health disparities...What a great opportunity to do the things I love to do.”
Mentoring is not a new tradition; in fact, it can be traced back to Homer’s Odyssey. Mentor was the Ithaca neighbor to whom Odysseus entrusted his infant son Telemachus when he went off to fight the Trojans. Customarily, mentorship in the research world involves hard-nosed science, manuscript writing, grant preparation, and how to survive in the academic research arena. But in addition to those elements, NIA’s Resource Centers for Minority Aging Research (RCMAR) are now applying a new twist—a two-way mentorship in which participants are simultaneously mentor and student. This approach is a key to help “[bridge] the gap between health disparity research and successful minority aging.”
The NIA developed the RCMAR initiative in 1997 to address the under representation of African American, Latino, American Indian and Alaskan Native investigators and participants involved in aging research. Today, NIA with the National Center for Minority Health and the National Institute of Nursing Research fund six RCMARs. The Centers play an integral role in:
Mentoring is critical to each of these goals.
The Centers take varied approaches to achieve their program goals, but they all include a Community Liaison Core (CLC) that engages community leaders in RCMAR projects. A central strategy of each CLC is to conduct communitybased participatory research. Community-based projects bring the perspective of community members to all stages of research from design to implementation to evaluation.
Each RCMAR CLC identifies a committee of selected community members, many of whom are trusted leaders of groups or organizations that work with minority older adults. This committee meets with RCMAR staff on a regular basis and when needed to discuss research issues facing the community, strategies to address the issues, and ways to measure results of the strategies. Through this approach RCMAR staff gain an insider perspective about community needs as they relate to participation in clinical, behavioral, and social research. These committees sometimes help develop research instruments and offer suggestions for how to revise programs to achieve maximum effectiveness. As a result, RCMARs develop culturally aware programs and are able to establish trust with potential participants. In return, many committee members feel comfortable advocating for the RCMAR research in the community and talking with minority older adults about the benefits of participation.
In return, while these community committees help teach RCMAR staff about local needs, they also offer a chance for community members to learn about the academic research process. Some
RCMARs, for example, offer technical assistance when community members develop project proposals and apply for funding.
Beyond this two-way mentorship between RCMARs and community members, RCMAR staff also mentor “RCMAR Scholars,” young, underrepresented scientists, most post-doctoral fellows and assistant professors, to promote a career in minority aging research. They use a multifaceted approach, including one-to-one advising; community, group feedback; directed pilot research projects; and/or didactic seminars.
In keeping with their training mission, RCMAR staff teach the Scholars many lessons including how to conduct community-based participatory research. They brainstorm ways to work effectively with minority older adults and teach recruitment and retention methods. In addition, projects developed by trainees during their mentorship are vetted by RCMAR staff, community committee members, and/or older adults living in their area. After completing their mentorship training, these novice scientists are equipped with the knowledge and skills to start building a career in minority aging research.
By departing from a top-down approach to research and embracing a symbiotic mentorship with the community, RCMARs have put into practice some novel, effective strategies that can ultimately reduce health disparities among older adults. Community-based participatory research helps RCMARs better understand study participants, builds relationships with important community leaders, and gains trust within the aging minority community. To find out more about this program, please visit the RCMAR website at http://www.rcmar.ucla.edu .
Current RCMAR Centers
We are always interested in hearing from minority program faculty, alumni, and students. Please contact us and let us know where you are and what you are doing.
Work Group on Minority Aging
Office of the Director
National Institute on Aging
Building 31, Room 5C35
Bethesda, MD 20892
|Name||University||Title of Project||Mentor/Supervisor|
|Christine Clark Friedman||Northern Arizona University||Use of Advanced Intercross Lines for Fine-Scale Mapping of Quantitative Trait Loc||Dr. Phillip Service|
|Adrienne Aiken||Morgan University of Florida||Examining the Effects of Improved Physical Fitness on Cognitive/Psychological Fun||Dr. Michael Marsiske|
|Amanda Waterstrat||University of Kentucky||Genetic Regulation of Hematopoietic Stem Cell Number||Dr. Gary Van Zant|
|Earlanda Williams||University of Texas Health Science Center San Antonio||Effects of Aging on Immunity and Autoimmunity||Dr. Ellen Kraig|
|Natividad Ybarra||University of Texas at San Antonio||Effects of Aging on Neuronal Morphology and Learning in Male Mice||Dr. Brenda J.Claiborne|
On November 15-16, NIA will hold its two-day interactive forum, the Technical Assistance Workshop for Minority and Emerging Scientists and Students. During the workshop, NIA staff and associated faculty members will present information and provide technical assistance on applying for NIA grants. Participants in the workshop, depending on career stage, will have an opportunity to make podium presentations of current or planned research projects and receive feedback from peers and NIA staff. The workshop will be held immediately prior to the 2007 Annual Scientific Meeting of Gerontological Society of America, in San Francisco, CA. Participation is by competitive application.
NIA encourages applications from members of groups underrepresented in aging research andinvestigators committed to research careers related to minority aging issues. Applicants should be preandpost-doctoral students or recent recipients of Ph.D., M.D., or related doctoral degrees; new to the NIH application process and/or embarking on an independent program of research; investigators with less than five years of research experience; and U.S. citizens, non-citizen nationals, or permanent residents.
Applications are due by July 16. For information and application forms, please contact Jamie Gulin at 301-496-0765; firstname.lastname@example.org . Links: Minority Research and Training newsletter is published twice a year by the Work Group on Minority Aging, Office of the Director, National Institute on Aging, Building 31, Room 5C35, Bethesda, MD 20892. Thanks to Editor Megan Homer. This is an administrative document.
Links: Minority Research and Training newsletter is published twice a year by the Work Group on Minority Aging, Office of the Director, National Institute on Aging, Building 31, Room 5C35, Bethesda, MD 20892. Thanks to Editor Megan Homer. This is an administrative document.