Alzheimer's & Dementia Outreach, Recruitment & Engagement Resources
Underrepresented
Displaying 101 - 174 of 174 resources.
- Many strategies to increase racial/ethnic minority recruitment focus on common diseases such as hypertension, while relatively few focus on less common conditions, often conducted in specialty clinics and dependent on physician referrals. This article presents the design of RECRUIT (Randomized Recruitment Intervention Trial), a national, randomized trial that examined the effectiveness of a trust-based continuous quality improvement intervention to increase minority recruitment into clinical...
- In this study, researchers explored the use of a community-based oral health initiative to assist in recruitment of racial and ethnic minorities to focus groups for older adults. The process involved planning a recruitment strategy, engaging the individuals involved in its implementation (senior center attendees, program staff, and directors), executing the recruitment plan, and reflecting on the process of implementation. Targets for recruitment were met, an outcome attributed to the...
- This study examined the factors that influence participation in clinical trials by older African Americans, including social support, transportation access, and physical impediments. Researchers surveyed 221 participants who were recruited from local African American churches. They found that increased intent to join a trial was associated with greater transportation mobility, social ability, and daily living ability. Among adults age 65 and older, those with lower levels of support during a...
- This study examined the feasibility of recruiting minority and underserved adults from a community research registry. Study staff attended health fairs to invite adults to join the registry, then examined rates of successful contact, scheduling, and participation for studies that used the registry. Non‐Hispanic whites were less likely than Hispanics to be interested in joining a research study, but among those scheduling an appointment, participation did not differ by race/ethnicity. The authors...
- The sponsors of the PEARLS (Program to Encourage Active, Rewarding Lives) study, a home-based depression-care management program for elders, partnered with three social service organizations in the Seattle area to identify hard-to-reach populations, barriers to reaching them, and strategies for improving recruitment and retention. Based on semistructured interviews with study staff and former PEARLS participants, several themes emerged, including trust, cultural appropriateness, meet them where...
- Recruiting minorities can be challenging for clinical researchers. This study examined the recruitment strategies used by "comprehensive" versus "traditional" researchers. Results of an online survey, conducted in 2010, found that "comprehensive" researchers used more, and more diverse and active, recruitment strategies, while "traditional" researchers used fewer and more passive strategies. The authors found that comprehensive researchers were more likely than traditional ones to 1) report...
- An annual event billed as “the largest Chinese dementia-specific educational conference in the nation” and conducted in Chinese (Mandarin) is targeted to concerned community members, healthcare professionals, and families affected by Alzheimer’s disease and related dementia. The forum is cosponsored by the University of California Memory and Aging Center and other organizations. At the 2017 event, held on a Saturday afternoon in the Intel Auditorium in Santa Clara, CA, experts provided updates...
- The Chinese Outreach Program at the UCSF Memory and Aging Center is targeted to the Chinese-American community in the Bay Area in order to improve knowledge about dementia in the community and to promote enrollment of Chinese Americans into studies conducted by the Alzheimer's Disease Research Center. The center maintains a 14-page document on its internal wiki called MACipedia that outlines Chinese outreach initiatives and procedures. The center has also produced a two-page flyer for use at...
- A webpage of the Community Outreach Program at the UCSF Memory and Aging Center, providing information and resources.
- This annual publication includes profiles of study participants, study partners, and research professionals; articles about topics related to Alzheimer's such as healthy aging and elder abuse; feature stories on current clinical trials; staff news; articles on the importance of African-American participation in research and brain donation; and a list of recent financial supporters of the Center's Alzheimer's research. InSight was a newsletter until 2016, when it was reformatted as a magazine.
- This article describes the results of efforts to recruit Asian Americans into longitudinal research on cognitive decline in aging. Recruitment strategies included clinics for assessment of cognitive impairment at the University of California, San Francisco campus and San Francisco’s Chinatown, lectures to local healthcare providers and community members, participation in community events, and publications in mass media. Over 200 Chinese patients were evaluated and 125 participants enrolled...
- This report describes the process used to develop the content for culturally relevant health information fact sheets targeted to Indigenous communities.
- This toolkit, originally developed by the African American Dementia Outreach Partnership and now distributed by the Balm in Gilead’s National Brain Health Center for African Americans, contains many resources for caregivers and families.
- This 72-page manual shares information learned during 4 years of a national grant to build awareness and support related to Alzheimer's disease in the Lexington/Bluegrass area in Kentucky.
- At a one-hour “Aging with Grace” education session, information was presented on “living longer, healthier, and smarter.” Topics covered were social engagement, exercise and physical activity, diet and nutrition, and brain health and normal aging. A full-color, one-page flyer targeted the 2017 class to African Americans (shown in photos on the flyer) and other under-represented populations. The flyer included date, location, and RSVP information.
- This University of Maryland Center for Health Equity website is designed to help build trust between communities and health researchers. It includes fact sheets, articles, reports, and videos.
- "Evaluation and Reporting of Age-, Race-, and Ethnicity-Specific Data in Medical Device Clinical Studies" is a 36-page document, issued in 2017, that provides guidance for industry and Food & Drug Administration (FDA) staff outlining the FDA’s data-reporting expectations and recommendations for the evaluation and reporting of age-, race-, and ethnicity-specific data in medical device clinical studies. The primary intent of these recommendations is to improve the quality, consistency, and...
- This toolkit is designed to help organizations educate their constituencies on the importance of having members of minority populations participate in clinical trials.
- The "Diversity in Clinical Trial Participation" web page, published by the U.S. Food & Drug Administration, explains the requirements for, and public benefits of, including diverse populations in clinical trials. The page provides links to multiple resources on diversity in clinical trials.
- This NIA video series covers topics about participating in Alzheimer's disease research.
- The "NIH Scientific Workforce Diversity Toolkit," published by the Scientific Workforce Diversity (SWD) Office of the National Institutes of Health (NIH), is a free, downloadable interactive resource that institutions can use to help advance their own faculty diversity and inclusion practices. The toolkit guides users through evidence-based activities to foster an inclusive culture including diversifying the talent pool, conducting unbiased talent searches, conducting outreach and networking...
- This webinar series covers regulatory documentation for clinical trials, informed consent, good clinical practice, and many other topics.
- This fact sheet is part of a series on dementia published by the Indigenous Cognition & Aging Awareness Research Exchange.
- The fact sheet provides information for healthcare providers on the different ways that age-related dementia is understood by indigenous communities.
- The fact sheet describes the warning signs and symptoms of dementia, and provides a list of resources.
- This one-page diagram provides information on preventing dementia for indigenous peoples.
- The one-page fact sheet describes the progression of dementia from diagnosis to the late stages.
- The Knight Alzheimer’s Disease Research Center (Knight ADRC) at Washington University in St. Louis held a workshop on issues surrounding recruitment of African-American participants into Alzheimer’s disease (AD) research studies. The workshop, titled “African American Participation in AD Research: Effective Strategies Workshop,” was held at Washington University on October 10, 2018.
- The African American Advisory Board counsels the research team at the Knight Alzheimer’s Disease Research Center (Knight ADRC) at Washington University in St. Louis on cultural sensitivity and appropriate outreach strategies for encouraging greater African American participation in memory and aging studies. The board is made up of influential members of the St. Louis African American community and was established in 2000.
- This trifold brochure from the Knight Alzheimer’s Disease Research Center (Knight ADRC) at Washington University in St. Louis is part of a group of materials for the Memory & Aging Project (MAP) research study. This particular brochure is targeted to the African American community in St. Louis. It covers some basics about memory loss and aging, warning signs of Alzheimer’s, and specific risk factors for African Americans. It also shares information about the Knight ADRC and its dedication to...
- "Preventing Dementia in Indigenous Peoples by Aging Well: Advice from Older Indigenous Peoples" is a fact sheet that combines a summary of advice from Alzheimer's societies, older indigenous adults, people diagnosed with dementia, caregivers, knowledge keepers, and health care providers w. The fact sheet includes a list of resources and a blank space for local organizations to add their own contact information. It is designed in 8 pages so that it can be printed both on regular printer paper or...
- This study examines how underrepresented older urban- and rural-dwelling individuals conceptualize participation in studies of cognitive impairment. Nine focus groups about the benefits of research participation were held with older adults from a community-based memory screening study. Results indicate that subjects viewed research participation as a way to address memory concerns and provide a benefit to society. The primary difference arising between rural and urban focus groups was that urban...
- This short news video from St. Louis, MO, focuses on the important role volunteers play in Alzheimer's research.
- This one-page flyer, targeted to prospective African-American participants, describes the importance of Alzheimer’s research personally, for loved ones, and for the community.
- The Penn Memory Center conducted the Anti-Amyloid Treatment in Asymptomatic Alzheimer's (A4) Study. Although not currently recruiting, this 4-minute radio interview discusses the center's active recruitment of African-American participants.
- This one-page, four-color handout includes brief information on the Mediterranean Diet and physical exercise. Photographs feature African-American couples.
- Penn Memory Center researchers used a multi-phase, theory-driven research process to craft and test advertising messages that would motivate African-American and non-Hispanic white adults to accompany their parent, step-parent, or parent-in-law to see a specialist for a memory evaluation. Staff members created a two-page handout that features images of several full-color ads and encourages organizations that provide services to older adults to make use of them, free of charge. Penn Memory Center...
- This one-page, full-color flyer describes the importance of brain autopsy to research and the special need for brain donations from people who are African American. Several bullet points summarize the donation process, and a paragraph answers the question, “Does donation fit in with religious beliefs?” Contact information is provided.
- "Dance for Health: Active Mind, Active Body" is a Penn Memory Center program to promote healthy living for older adults through exercising, socializing, and healthy eating. The program involves weekly dance sessions and monthly intergenerational activities with students from an area high school. At the beginning and end of each 3-month session, participants are asked to complete a survey to measure well-being and satisfaction with their everyday lives. The program is held at the Ralston Center...
- This project of award-winning photographs of caregivers is featured in the Penn Memory Center's creative space, "Making Sense of Alzheimer's."
- The purpose of the Advisory Board is to provide the Penn Memory Center/Penn Healthy Brain Research Center with candid guidance, advice, and critiques. Its goal is to ensure that "our research and dissemination efforts reflect our region’s multicultural makeup and that we raise awareness about Alzheimer’s disease and brain health in the communities of Philadelphia, with a particular focus on the African American community." Board members are expected to: Know and understand the goal and mission...
- This 11-slide presentation entitled, "Developing, Implementing, and Monitoring Penn Memory Center’s Multicultural Recruitment and Retention with a Focus on African American Participants," provides information about the Penn Memory Center and its efforts to increase study enrollment of residents in the Philadelphia area who are African American.
- This 19-slide presentation was developed for use at community events in West Philadelphia, which has a large African-American population. The presentation covers the purpose of the Penn Memory Center, the difference between dementia and Alzheimer’s disease, what can be done to delay cognitive decline, the importance of Alzheimer’s research, Penn Memory Center’s involvement with the National Alzheimer’s Coordinating Center, and benefits for research participants. The content and photographs are...
- This 40-page guide provides outreach strategies and resources for providers and coalitions to better support African Americans with end-of-life issues. Chapters are: Overview, African American Focus Group Findings, Strategies for Reaching Out to African American Communities, Model Outreach Programs and Initiatives, and Resources for African American Outreach. The guide was produced in 2008 by Caring Connections and the National Hospice and Palliative Care Organization.
- The Penn Memory Center’s coordinator for diversity research composed a template for emails to be sent individually to community leaders in the African-American communities of Philadelphia. The message describes the purpose and activities of the Penn Center and its community outreach plan. A list of organizations with which the center hoped to collaborate was included. The message concluded with a request to meet so that the coordinator could obtain community input on the research recruitment...
- In this study, four groups of 30 persons per group defined by self-identified ethnicity (Latino Puerto Ricans or non-Latino whites) and caregiver status (caregivers or noncaregivers) completed free-listing exercises to identify the words they use when they describe Alzheimer’s disease causes, symptoms, caregiving, and research risks and benefits. The researchers identified notable differences in how Latino Puerto Ricans and non-Latino whites talk about Alzheimer’s disease and Alzheimer’s disease...
- Wayne State University, University of Michigan, and Michigan State University provide the faculty who jointly lead the Healthier Black Elders Center (HBEC). Faculty leaders, staff, and the Community Advisory Board members work together to improve the health of older African Americans in Detroit through a combination of education and research.
- A six-panel Spanish-language brochure from the Rush Alzheimer’s Disease Center provides reasons for participating in research, benefits, and how to get more information. It includes an infographic of ways for people to protect their brain health, including tips for healthy eating, exercise, and participating in activities.
- A one-page handout from the Rush Alzheimer’s Disease Center provides information for participants to share with family members about their participation in the Minority Aging Research Study (MARS) Organ Donation Program. The handout includes information on MARS, which is open to African Americans 65 years old or older; why donation is important; what to do at the time of death; and the process, including transportation, what will be removed, length of the procedure, and the follow-up report that...
- A three-page handout developed for the Latino CORE Study at the Rush Alzheimer’s Disease Center includes 16 frequently asked questions related to donation. The series of questions covers the process and benefits of brain donation for helping scientists learn about changes in the brain, spinal cord, and nerve and muscle tissue in order to better treat and prevent memory loss and dementia in future generations.
- This popular fact sheet, published by the National Institute on Aging (NIA), discusses the signs and symptoms, causes, diagnosis, and treatment of Alzheimer's disease, as well as changes in the brain. The fact sheet is available in print in English and online in English and Spanish.
- This AgePage brochure, available in English and Spanish, discusses the importance of advance care planning for older adults, including identifying and gathering important papers, step-by-step instructions on getting your affairs in order, and resources to learn more. The information in the brochure is also available online on the NIA website in English and Spanish.
- A checklist written in Spanish that provides important steps to take after an Alzheimer's Diagnosis.
- The Community Action Council at the Boston University Alzheimer's Disease Center (BU ADC) is comprised of leaders from the older adult African-American community. Members are invited to present new research studies, discuss recruitment strategies, report research findings, and provide education or feedback on specific initiatives. Standing members of the council include leaders in the greater Boston African-American community, registry participants, and collaborative partners from Boston...
- This resource describes the Student Ambassador Program at the Boston University Alzheimer’s Disease Research Center and cites a study that supports the program’s efficacy.
- BUILD EXITO is an NIH funded program that provides undergraduate minority students opportunity to work with a research mentor for 2 years.
- This cross-sectional study examined conceptions of dementia in 92 family caregivers for persons with dementia from four ethnic/racial groups: African-American, Anglo European-American, Asian-American, and Latino. In-depth interviews explored participants' ideas about the nature and cause of dementia, known as explanatory models. These explanatory models were categorized as biomedical, folk, or mixed (folk and biomedical). Overall, 54 percent of caregivers held mixed explanatory models. Although...
- This paper details qualitative analysis of interviews with 23 Chinese families and extensive fieldnotes generated by project ethnographers and interviewers in order to identify sociocultural barriers to recruitment that emerged during a 4-year study of dementia caregiving among Chinese families in the Boston area. The analysis identified the following themes: dementia-related changes were construed as a normal part of aging rather than a disease, making it more difficult to identify dementia...
- In this journal article, researchers describe the history, development, and success of the recruitment and screening procedures used by researchers at the UC Davis Alzheimer's Disease Center to facilitate minority enrollment in research. The article discusses the elements of an active community-outreach approach, including hiring and training a bilingual staff, providing transportation to and from study sites, and offering in-home cognitive screening. This approach resulted in a dramatic...
- In an effort to understand cultural attitudes towards brain donation, four Alzheimer's Disease Research Centers conducted focus groups to explore beliefs about and attitudes toward brain donation among African-American, Chinese, Caucasian, and Latino research subjects and their family members. Researchers found that many of the concerns, attitudes, and beliefs about brain donation were similar across the four ethnic groups. Concerns and attitudes fell into three categories: concerns and...
- African-American, Caucasian, Asian, and Latino research volunteers were surveyed at 15 Alzheimer Disease Centers to identify predictors of willingness to assent to brain donation. Positive predictors included older age, Latino ethnicity, understanding of how the brain is used by researchers, and understanding of what participants need to do to ensure their brain will be donated. Negative predictors included African/African-American race, belief that the body should remain whole at burial, and...
- The CNN news story, "History of mistrust complicates study of dementia in African-Americans," features study participants at UC Davis Alzheimer's Disease Center and Rush Alzheimer's Disease Center in Chicago considering brain donation for family members with Alzheimer's. The participants address issues of distrust of research due to past abuses of African Americans. The article also includes a short video on "What Is Dementia?"
- This 1-day educational program for Spanish-speaking adults and caregivers covers Alzheimer's disease and other topics.
- This issue of the UC Davis Alzheimer's Disease Center newsletter, produced in both English and Spanish, features articles on "Ethnic disparities in brain health and dementia" and a profile of an African-American family participating in the ADC's brain donation program. These plus other articles support a call to action for individuals to join research studies at the center.
- This website is designed to help recruit and retain racial/ethnic minorities into therapeutic clinical trials to reduce cancer-related health disparities.
- This two-sided card includes six frequently asked questions about lumbar puncture and a testimonial from a Chinese-American research participant.
- This presentation designed by the UC Irvine Institute for Memory Impairments and Neurological Disorders alternates between Chinese and English and includes topics such as the aging population, ways to ensure brain health while aging, and age-related brain disease.
- The Forget Me Not Project aims to raise awareness of issues and concerns that affect the minority community by presenting award-winning stage plays, films, documentaries, and other performing arts projects. Dedicated to helping communities of color, the Forget Me Not Project focuses on topics related to health and wellness, including caregiving, Alzheimer’s disease, diabetes, heart disease, and prostate cancer.
- This research article provides an overview of a community-based participatory research project that involved a partnership between Indiana University and the Senior Companions Program of Catholic Charities Indianapolis. Sixty senior companions participated in focus groups to describe how the Senior Companions Program impacts their quality of life as well as that of their clients, who were predominately African Americans. The authors attribute the success of their research project to the...
- This documentary features personal testimonies of how Alzheimer’s has affected Native American communities in North Carolina.
- The Priority Population Toolkit is a resource for researchers who would like to work with populations facing health disparities and underrepresentation in research. Sections address these target populations: African American, Hispanic and Latino/Latina, LGBT, and People with Disabilities. The toolkit was developed by the Recruitment, Retention, and Community Engagement Program of the Center for Clinical and Translational Science at the University of Illinois at Chicago.
- “Maid’s Door” is a play written by Cheryl Davis that centers around an African-American matriarch Ida Farrell exhibiting signs of Alzheimer’s disease. The drama addresses the impacts of Ida’s changes on her family, including her adult daughter who cares for her. The Sticht Center for Healthy Aging and Alzheimer's Prevention partnered with the North Carolina Black Repertory Company to promote the play and host talk-back sessions after the play. In these sessions, experts talked with the audience...
- A one-page handout describes the two types of studies conducted at the Rush Alzheimer's Disease Center (RADC), epidemiological studies and clinical trials, and explains the differences between the two. The handout is in English on one side and Spanish on the other.
- This study examined barriers and facilitators to clinical research participation among African Americans. Researchers conducted 8 focus groups consisting of community members and community leaders (64 total), including clergy, community healthcare providers, and service providers who may influence people’s decision to participate in research. The most common barriers to participation included fear and mistrust of research due to such factors as lack of information about research and prevailing...