Alzheimer's & Dementia Outreach, Recruitment & Engagement Resources
Communication Materials
Displaying 51 - 100 of 170 resources.
- This article developed by the University of Pennsylvania’s Memory Center offers guidelines to Alzheimer’s and dementia caregivers for managing daily care at home and coping with anxiety during the COVID-19 pandemic. The article includes general tips and anxiety-busting tools, advice on medical care, activity ideas for meaningful engagement, and additional information on COVID-19 and Alzheimer’s disease.
- The BrightFocus Foundation’s Clinical Trials Finder asks a series of questions to help users find an appropriate Alzheimer’s disease clinical trial. The foundation has also developed a brochure, “Clinical Trials: Your Questions Answered.” BrightFocus funds scientific research worldwide related to Alzheimer’s disease. “Turning Point” is a documentary (2.5 hours, 2017) that provides an inside look at the doctors, scientists and patients who are working to uncover the mysteries of Alzheimer’s...
- Alzheimer’s disease and related dementias are described in infographics produced by the Michigan Alzheimer’s Disease Research Center (MADRC).
- This article describes the information-gathering process that led to the creation of two educational resources designed specifically for the Hispanic/Latino population, The Precious Gift Brain Donation Brochure and the Brain Donation Steps Handout . In a review of the National Alzheimer’s Coordination Center’s (NACC) database for June 2005–May 2016, the authors found that people who self-identify as Hispanic/Latino made up only 8 percent of participants enrolled and 3 percent of the deceased...
- The University of Pittsburgh Alzheimer's Disease Research Center (ADRC) publishes a biannual, 12-page publication for a lay audience.
- Dimensions is a twice-a-year publication of the University of Washington Alzheimer’s Disease Research Center (ADRC).
- This 12-page guide describes the Mayo Clinic Alzheimer’s Disease Research Center and provides information on Mayo-provided programs and resources focused on mild cognitive impairment, Alzheimer’s disease, Lewy body dementia, and frontotemporal degeneration.
- This 20-page handbook is intended as a resource for people who have been diagnosed with memory loss. A shorter version is available in Spanish.
- More than 25 plain-language informational brochures in English have been developed to enable and improve communication between clinical research staff and research participants. Most of the brochures are available in an additional 15 languages.
- NIA’s "Clinical Trials and Older Adults" booklet covers the what and why of clinical trials, benefits and risks of participating, and how to find a clinical trial.
- "Why My Grandmother Carried a Plastic Brain in Her Purse" was published April 2018 in The Atlantic . It features Marjorie Pearlson, a 93-year-old woman who is passionate about her decision to donate her brain to science. Ms. Pearlson plans to donate her brain to the University of Miami’s Brain Endowment Bank, one of six brain and tissue biorepositories funded by NIH’s NeuroBioBank .
- "Leaving Your Brain to Science: Don’t Let Myths Dissuade You" describes the Brain Donor Project (which supports the NIH NeuroBioBank ) and presents basic facts about brain donation. The article was published in the October 2018 issue of National Geographic .
- The Stanford ADRC provides videos and presentations about Alzheimer's and related dementias in Spanish.
- 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...
- A two-sided informational card that provides seven frequently asked questions about brain donation and a testimonial from a Chinese-American study partner.
- This online toolbox offers resources from Clinical & Translational Science Awards (CTSA) programs, and their community health partners, to help investigators across the life cycle of their projects.
- This trifold brochure describes the UC Irvine Institute for Memory Impairments and Neurological Disorders (UCI MIND) and its mission. It describes innovations at the Institute, including the development of novel mouse models for Alzheimer's research and the establishment of an Induced Pluripotent Stem Cell (iPS) Core. The brochure also includes statistics on Alzheimer's disease in Orange County, CA. Contact information is provided for giving opportunities, research opportunities, and education...
- Public-directed page of the NIH NeuroBioBank providing information on donation and answering frequently asked questions.
- This trifold brochure created by the Johns Hopkins Alzheimer’s Disease Research Center provides information on the Memory and Aging Study Brain Donation Program and the importance of donation. The brochure includes information on making the decision, joining the program, and making arrangements. It also features participant profiles and provides contact information.
- 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.
- The Research Ambassador Program is for current and past participants in research, and their caregivers, at the Massachusetts Alzheimer’s Disease Research Center (MADRC) and the Center for Alzheimer Research and Treatment (CART). Ambassadors are willing to serve as educators and mentors to others interested in learning about their experience as study participants. Ambassadors talk about their experience in studies, help others understand how research participation has fit into their lives, and...
- The Rapid Diagnostic Clinic, part of the Center for Brain/Mind Medicine at Brigham and Women’s Hospital, provides access to earlier diagnosis for patients interested in research participation at the Center for Alzheimer Research and Treatment (CART) and supports physician partners whose patients are in need of diagnostic assistance. Two-sided flyers provide information for providers and patients, respectively.
- 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) develop “partnerships in care” with professionals to support patients and families in receiving more timely access to diagnosis of mild cognitive impairment or early Alzheimer’s disease and for care, treatment, and research. Supports that MADRC/CART offers to clinical partners include neurological and neuropsychological testing support, the Rapid Diagnostic Clinic Program...
- 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...
- This handout, created by Dementia Australia, provides information to help people make a decision about donating their brain or a loved one’s brain for research and how to go about it. The handout features a series of frequently asked questions covering what brain donation is, how to become a donor, and the process of donation.
- The researchers tested whether targeted recruitment letters acknowledging diabetes health disparities and health risks specific to recipients' racial/ethnic group improved two metrics of trial participation: willingness to be screened and enrollment. This experiment was efficiently nested within a randomized clinical trial examining a preventive lifestyle intervention among pregnant women at high risk for diabetes. Participants received either a targeted recruitment letter with health risk...
- 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.
- 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.
- 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 one-page fact sheet developed for the Memory & Aging Project at the Knight Alzheimer’s Disease Research Center (ADRC) describes psychometric testing and the purpose of testing. The sheet also addresses the question of whether results will be shared.
- This two-page fact sheet developed for the Memory & Aging Project at the Knight Alzheimer’s Disease Research Center (ADRC) describes positron emission tomography (PET) and what happens before and during an appointment for a PET scan. The sheet also provides a link to more information from the Radiological Society of North America.
- This two-page fact sheet explains cerebrospinal fluid collection and potential side effects of lumbar puncture.
- This two-page fact sheet developed for the Memory & Aging Project at the Knight Alzheimer’s Disease Research Center (ADRC) describes sleep monitoring and the devices used in the sleep study: Actiwatch, Sleep Profiler, and Alice PDX. The sheet also addresses the question of whether participants will see their results.
- This two-page fact sheet developed for the Memory & Aging Project at the Knight Alzheimer’s Disease Research Center (ADRC) describes magnetic resonance imaging (MRI) and what happens during an appointment. The sheet also addresses potential risks and provides a link to the Radiological Society of North American for more information.
- 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 toolkit is designed to help organizations educate their constituencies on the importance of having members of minority populations participate in clinical trials.
- The National Disease Research Interchange (NDRI) Brain Tissue Programs four-page, full-color brochure provides information about organ and tissue donation for research.
- This webinar series covers regulatory documentation for clinical trials, informed consent, good clinical practice, and many other topics.
- 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.