Alzheimer's & Dementia Outreach, Recruitment & Engagement Resources
Educate & Raise Awareness
Displaying 101 - 200 of 217 resources.
- The NIH Strategic Plan for Tribal Health Research FY 2019–2023 is designed to improve NIH's relationship and collaborative efforts with American Indian/Alaska Native communities by enhancing communication and collaboration, building research capacity, expanding research, and enhancing cultural competency and community engagement.
- Through videos and in-person sessions, this program encourages community members to obtain insight into what it’s like to live with dementia and to turn that understanding into action.
- This toolkit provides primary care providers with the tools necessary to recognize normal cognition, diagnose Alzheimer's disease, and identify other cognitive problems requiring specialty referral.
- This 12-minute video, entitled "GAPS," addresses the challenges presented by Alzheimer’s disease in Asian American communities.
- This webpage and 5-minute video encourages the participation of American Indian, Alaska Native, and other indigenous communities in Alzheimer’s disease clinical trials.
- A link to the Alzheimer's Disease Research Centers (ADRCs) X account .
- The Stanford ADRC provides videos and presentations about Alzheimer's and related dementias in Spanish.
- "Dementia Awareness" is a 16-slide presentation from the Stanford Alzheimer's Disease Research Center (ADRC) on the need for partnership with the American Indian community to raise awareness and increase participation in dementia research.
- NIA has created four video stories profiling participants in Alzheimer’s disease clinical trials. These videos feature participants from different walks of life who discuss what motivates them and how research staff support them to participate in studies and trials. The videos are intended to be shared as part of engagement and recruitment efforts for clinical studies. Each video was made with a specific audience in mind: Will’s Story —When both of Will’s parents developed dementia, he and his...
- This NIA-produced planning guide for investigators, study coordinators, recruitment communications staff, and others involved in clinical research outlines strategies for improving community-based research participation.
- This study explored why participation in clinical trials is lower in the African American population. The authors examined two sets of potential barriers: structural/procedural (limited accessibility, lack of awareness, doctors not discussing clinical trial options, and lack of health insurance) and cognitive/psychological (lack of subjective and factual knowledge, misperceptions, distrust, fear, and perceived risk). The authors found that lack of subjective knowledge and perceived risk were...
- One-page flyer that lists monthly topics for the Facebook Live Series, "Ask the Doc: Alzheimer's Research Today."
- The MADRC/CART Volunteer Program is made up of community members who would like to support the work of the Massachusetts Alzheimer’s Disease Research Center (MADRC). Volunteers provide support at outreach events, speak to community members, review materials, provide feedback on programs, help assemble program materials, and participate in other activities. A two-page, full-color flyer is used to recruit volunteers.
- An illustrated, two-page, full-color flyer provides information on MUNDOS , a program at the Massachusetts General Hospital Psychology Assessment Center. MUNDOS provides neuropsychological services and enriched training opportunities for clinical psychology students who are interested in multicultural neuropsychology. The program serves individuals with diverse cultural and linguistic backgrounds, including individuals who are monolingual and bilingual Spanish/English speakers.
- The Massachusetts Alzheimer’s Disease Research Center (MADRC) and the Center for Alzheimer Research and Treatment (CART) maintain a roster of community educators and MADRC/CART faculty and staff who are available to make educational presentations. Customized educational programs can be arranged. Programs offered in Boston and surround communities cover such topics as normal versus abnormal memory in aging, the importance of early diagnosis of Alzheimer’s and related dementias, prevention...
- The Massachusetts Alzheimer’s Disease Research Center (MADRC) and the Center for Alzheimer Research and Treatment (CART) are supported by a community of collaborators who are aligned in the fight to educate about and combat Alzheimer’s disease and related dementias. The collaborating team holds a monthly Operations Meeting to discuss outreach and recruitment activities and review how the staff at MADRC/CART can support work happening in the community. Members may attend in-person or by phone to...
- The Massachusetts Alzheimer’s Disease Research Center (MADRC) and the Center for Alzheimer Research and Treatment (CART) are supported by a Community Advisory Board. Leaders from the community serve as advisors on the actions needed to increase participation, particularly of underrepresented groups, in MADRC/CART clinical research programs. Board members advise on collaborations, speak at community outreach presentations about the need for diverse representation, review materials created for...
- Webnovela Mirela is a program for Hispanic/Latino caregivers of individuals with Alzheimer's or other dementia.
- The Global Brain Health Institute is an initiative that works to reduce the scale and impact of dementia around the world by training and supporting a new generation of leaders.
- 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...
- The Neurodegenerative Disease Brain Bank at the UCSF Memory and Aging Center was established in 2008 and serves as a repository for nervous system tissue donated for research purposes. This webpage explains the benefits of brain donation, who is eligible, and how the tissue is used.
- A webpage of the Community Outreach Program at the UCSF Memory and Aging Center, providing information and resources.
- The Hellman Visiting Artist Program is a community outreach initiative from the UCSF Memory and Aging Center to encourage artists to explore their art through an interaction with the topic of dementia and people affected by the disease. Each year, an accomplished artist is invited to visit the center to learn about neurodegenerative disorders like Alzheimer’s disease and frontotemporal dementia and to participate in a creative exchange with researchers, patients, and families. The program...
- The What is Dementia? section of the UCSF Memory and Aging Center website provides an overview on dementia, causes, types, treatment, and links to more resources, including A Patient's Guide to Dementia. Subpages go more in-depth on tests for dementia, medications, surgery and hospitalization, genetics, healthy aging, memory, behavior, and function.
- UCSF’s Memory and Aging YouTube Channel covers topics on research, researchers, caregiving, and how the brain works.
- The Global Brain Health Institute is an initiative that works to reduce the scale and impact of dementia around the world.
- 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 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.
- This annual symposium is sponsored by the University of Kentucky Sanders-Brown Center on Aging and named for former Center director William Markesbery. The daylong scientific meeting is followed by a half-day community session to which the public is invited free of charge, with breakfast provided. An “Ask the Experts” panel is a popular component of the community session. In 2017, the scientific meeting had more than 160 attendees and the community session drew more than 650 people.
- 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.
- Lifestyle Enrichment for Alzheimer’s Prevention (LEAP!) is a 6-week program on the basics of Alzheimer’s prevention sponsored by the University of Kansas Alzheimer’s Disease Center and its partners. Program topics include nutrition, physical activity, social-emotional health, sleep, and cognitive engagement. A full-color, one-page flyer was used to promote the 2017 program.
- 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.
- 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...
- The Accrual Quality Improvement Program (AQuIP) of the Division of Cancer Prevention, National Cancer Institute, produced "The AQuIP Toolkit" as a user-friendly library of recruitment resources. The toolkit includes a recruitment instruction manual, templates for recruitment materials, an image library, and references for additional information.
- 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.
- 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 partnership was established to enhance community members’ access to the expertise of the University of Pittsburgh Alzheimer Disease Research Center (Pitt ADRC). The Pitt ADRC Outreach Core partners with local schools and others to raise awareness of Alzheimer’s disease, cognitive aging, and the ADRC in the Pittsburgh area. Funded by the Provost’s Office and Clinical and Translational Science Institute, the partnership’s activities include lectures on brain topics at local schools...
- 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 has created Web pages describing its open studies. Each page provides a link to a printable PDF with the same information: Aging Brain Cohort (ABC) Study Alzheimer’s Disease Neuroimaging Initiative 3 Study Longitudinal Early-onset Alzheimer’s Disease Study (LEADS) Medial Temporal Lobe (MTL) Study The PEGASUS Study (PDF 65.7 KB) REVEAL-SCAN Study Time Out Respite Care Research Study
- 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...
- "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...
- The Carl Rinne Lewy Body Dementia Initiative provides support to people with Lewy body dementia and their care partners, educates professionals, and builds public awareness of Lewy body dementia in Michigan. The initiative facilitates three support groups in the Ann Arbor and metro-Detroit areas. The initiative has also created educational materials, expanded materials provided to patients through the cognitive and movement disorders clinics, and increased awareness among primary care providers...
- This series of recorded video presentations covers important topics in dementia research.
- Making Sense of Alzheimer's is a creative space designed to help people better understand Alzheimer's disease and make sense of it.
- This photography project allowed older adults living with mild cognitive impairment to document their lives as they address their condition. Using cameras provided by the Penn Memory Center, participants photographed the people, places, and objects that defined their daily lives. The photos served as a tool to facilitate conversations with researchers.
- This project promotes ideas and advocacy for improving and safeguarding the financial health and well-being of older adults, especially those with cognitive difficulties such as mild cognitive impairment and dementia. Jason Karalwish, MD, introduced the concept of Whealthcare in a 2015 Forbes column titled, "Why Bankers, Financial Analysts and Doctors Need to Start Working Together," and he has testified before Congress on this subject. A 2017 Whealthcare conference was sponsored by the Penn...
- 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.
- The Michigan Alzheimer’s Disease Research Center (MADRC) has developed partnerships with three regional Alzheimer’s Association chapters. Since 2012, they have co-sponsored and participated in annual community educational programs in the Ann Arbor (MI), Southfield (MI), and Toledo (OH) areas. “Alzheimer’s Research Nights” are held in August each year around the states of Michigan and Ohio. The presentations included research information from the most recent Alzheimer’s Association International...
- The Michigan Alzheimer’s Disease Research Center’s newsletter facilitates recruitment and retention while providing Alzheimer’s disease education. It is published biannually and mailed to all participants in the center’s research studies, with an electronic version sent to community and academic partners. Each issue highlights actively recruiting studies, research findings from center studies, profiles of center staff and research participants, education on emerging topics in the field, and...
- The "Headlines" newsletter from the Wisconsin Alzheimer’s Disease Research Center (WADRC) includes news, Center highlights, information on upcoming events, and descriptions of select open studies. The newsletter was launched in 2014 and is now available as an e-newsletter about twice a month.
- This online web portal from the National Institutes of Health (NIH), includes information for the public on participating in a clinical trial. The portal includes information for parents and family members, basic information on clinical trials, and personal stories from trials participants.
- The All of Us Research Program has many resources, such as videos, social media postings, and websites.
- The National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research outlines practical, proactive approaches to help study sites engage a wider, more diverse number of volunteers.
- This health information article contains information on participating in Alzheimer's disease research and why it matters. It covers the benefits and risks of participating in an Alzheimer's or related dementias clinical trial, questions to ask, safety, and tips for finding trials.
- This tip sheet includes information on advance care planning for older adults, including developing a will, advance directive, healthcare power of attorney, and more. It also includes resources for older adults to learn more. The information in this tip sheet is also available online on the NIA website.
- 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.
- This booklet is designed to help older adults make the most of their medical appointments, develop effective communication with their doctors, cultivate communication strategies to help them discuss sensitive subjects with their doctors, and more. It also includes medications and appointment planning worksheets. The information in this booklet is also available online on the NIA website.
- NIA webpages provide tips for healthcare professionals to communicate effectively with older patients.
- This booklet, developed by the National Institute on Aging and the National Institute of Neurological Disorders and Stroke, provides an overview of research on Alzheimer's, vascular dementia, mixed dementia, frontotemporal disorders, Lewy body dementia, and more. The information in this booklet is also available online on the NIA website.
- This short, easy-to-read booklet discusses Alzheimer's disease basics, causes, diagnosis, treatment, caregiving, and when to see a doctor. The information in the booklet is also covered in articles on NIA's website.
- This short, easy-to-read booklet discusses information on Alzheimer's disease, Alzheimer's genetics, and genes and their role in our health. It also provides evidence-based information on what it means to have a family history of Alzheimer's disease. The information in the booklet is also covered in articles on NIA's website.
- This short, easy-to-read booklet explores the differences between normal forgetfulness and more serious memory loss, the basic facts about Alzheimer's disease and dementia, and how to get help if one notices memory problems. The information in the booklet is also covered in articles on NIA's website.
- This webpage from the National Institute on Aging explores participation in clinical trials in an easy-to-read, straightforward manner. The page covers general information about participation in clinical trials, terms to know, things to consider before participation, benefits, risks and safety considerations, diversity in clinical trials, registries and matching services, and more.
- A checklist written in Spanish that provides important steps to take after an Alzheimer's Diagnosis.
- This fact sheet contains information for research participants about biomarkers used in Alzheimer's and dementia detection and research, including brain imaging, cerebrospinal fluid, and blood and genetic tests.
- This booklet from the National Institute on Aging and the National Institute of Neurological Disorders and Stroke, provides an overview of frontotemporal dementia, primary progressive aphasia, and related movement disorders. It gives information about the disorders' symptoms, causes, diagnosis, treatment, and care. The information in this booklet is also available online on the NIA website.
- This booklet provides basic information about Lewy body dementia, including diagnosis, treatment, caregiving, and information for people living with Lewy body dementia.
- These online resources from the National Institute on Aging were designed to support Alzheimer's Disease Centers in encouraging brain donation among research participants. The template includes frequently asked questions about brain donation and communication tips.
- At this free 3-hour educational event, presenters from the Boston University Alzheimer's Disease Center highlighted lifestyle factors and brain health, current understanding of Alzheimer’s disease, and current and future research. Following the presentations, participants enjoyed a Mediterranean-diet style meal prepared by local chefs.
- 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.
- "Steven Steps to Managing Your Memory: What's Normal, What's Not, and What to Do About It" was written by core directors at the Boston University Alzheimer's Disease Center to help older adults understand normal age-related memory changes and when to see a doctor. It presents information on dementia, mild cognitive impairment, and Alzheimer's disease, including current treatments and what the research shows for prevention and brain health. The book also suggests memory aids and provides...
- 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.
- Published twice a year, this newsletter features updates on research, resources, and news generated by the Shiley-Marcos Alzheimer's Disease Research Center. The newsletter is written to be accessible to a lay audience, and features stories by study participants and their families, research updates, and information on trials that are enrolling participants. All study participants are given a printed copy of the newsletter.
- This handout, developed by a caregivers’ support group, provides a list of ideas for family and friends wishing to support caregivers and help relieve their stress. The suggestions include providing meals, visiting with the person with dementia, sustaining friendships with caregivers, scheduling a family meeting to discuss short- and long-term care, and more.
- A YouTube series that features interviews with experts on cognitive aging and Alzheimer's disease and related dementias.
- Written by faculty and staff at the Michigan Alzheimer’s Disease Research Center (MADRC), blog posts are distributed through the University of Michigan Health System’s “Michigan Health” blog. Recent posts include: How to Visit a Loved One Who Is Dying: A Caregiver and Patient’s Tips Alzheimer’s Disease vs. Dementia: What’s the Difference? 5 Ways to Protect Your Memory from Dementia Alzheimer’s: Not Just a Disease for Older Adults How Therapy Animals Help Those Living with Dementia A Lewy Body...