Communication Materials

This article describes how the University of Pittsburgh’s Alzheimer’s Disease Research Center used research participation stories to create messaging for recruitment materials.

The Mesulam Alzheimer’s Disease Research Center offers a monthly email newsletter that includes information and resources on dementia.

This infographic helps research participants learn more about the differences between clinical trials and observational studies.

With printable materials and videos, this dementia toolkit is designed to help students, health care professionals, families, and members of the community understand more about dementia.

In this one-page flyer, a research coordinator answers common research participant questions.

This booklet for research participants, patients, caregivers, and families provides information on brain health and Alzheimer's disease.

This booklet helps readers understand more about Alzheimer’s disease and the impact on Native American people.

The BrainTalk series are videos as well as slides presentations on a variety of topics ranging from research participation to exercise.

This three-page PDF describes why Lewy body dementia clinical research is important, explains the development and stages of trials, and encourages people to consider joining a trial.

This is a one-page recruitment flyer encouraging volunteers with Alzheimer’s disease, Parkinson’s disease, Lewy body disease, or mild cognitive impairment to join a clinical trial.

In this two-page flyer, a healthy participant who does not have Alzheimer’s disease describes why he decided to participate in Alzheimer’s research.

Past and present Alzheimer’s Disease Research Center patients and family members share their experiences in participating in research studies.

The Massachusetts Alzheimer’s Disease Research Center offers an eight-page guide for primary caregivers of people with Alzheimer’s disease.

The Massachusetts Alzheimer’s Disease Research Center offers an eight-page handout and presentation on participating in Alzheimer’s disease clinical research.

This brochure provides an overview of the Alzheimer’s Outreach Program at the University of Pittsburgh Alzheimer’s Disease Research Center, which invites African Americans age 60 or older to participate in research as healthy volunteers.

A one-page flyer from the Wisconsin Alzheimer’s Disease Research Center explains the brain donation process in six simple steps.

These resources, posted by the UCSF Memory and Aging Center, include FAQs and guidance for older adults, social distancing compliant activities, tips for dementia caregivers, and services to help access food, incontinence supplies, and pharmacy needs.

This customizable flyer is designed for community agencies to share critical information about COVID-19, including why older adults and people with chronic conditions are at higher risk, symptoms of COVID-19, what to do if someone gets sick, and ways to spot and avoid COVID-19 scams. Designed to be easy to distribute, for example during wellness checks, the two-sided flyer is also customizable so agencies can add their logo and contact information to the back page.

This webpage provides guidance for caregiving during COVID-19. Information includes facts about COVID-19, handwashing and sanitizing, cleaning the home, self-care, social distancing, home engagement opportunities and managing medical care. A similar resource was posted by several Alzheimer’s Disease Research Centers (ADRCs) to communicate with research participants and the ADRC’s community members.

This special COVID-19 issue of the "Dementia Connection" newsletter compiled by Mayo Clinic Alzheimer’s Disease Research Center provides links to helpful online resources including tips for caregiving, self-protection, and remaining active, healthy, and safe while staying at home during the COVID-19 pandemic.

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.

Registry for Remembrance is a community and academic partnership to educate and recruit African Americans for long-term research participation at the Emory Goizueta Alzheimer’s Disease Research Center (ADRC).

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.

This 12-page booklet describes Emory University’s Alzheimer’s Disease Research Center (ADRC) and its current opportunities for clinical trial participation, plus information on its research activities, clinics, educational offerings, and research registries.

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 Shiley-Marcos Alzheimer's Disease Research Center offers memory screening for outreach and recruitment at multiple locations and provides a bilingual flyer with information on screenings.

A one-page handout from the Stanford Alzheimer's Disease Research Center explains brain donation in simple steps.

A six-panel brochure from the Stanford Alzheimer's Disease Research Center uses a frequently asked questions format to provide information on brain donation.

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 Sanders-Brown Center on Aging at the University of Kentucky created a trifold brochure for a brain donation program related to the Down Syndrome—Aging & Alzheimer's Disease Study. The brochure includes information on why brain donation is important, whether donation will affect funeral arrangements, the purpose of the study, what's involved in autopsy, and who can donate. It also includes 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...

The Harvard Brain Tissue Resource Center created a four-page brochure focused on different religious perspectives of tissue donation and postmortem human brain research. The brochure seeks to address the question that many potential donors have: Is the decision to support essential research by donating brain tissue after death compatible with my religious beliefs? The information covers Protestantism, Catholicism, Judaism, Greek Orthodox, Islam, Buddhism, Hinduism, Jehovah's Witness, and...

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. The center has several materials related to brain donation for patients and research participants of the center. Two-page handout on the benefits of autopsy and how it improves diagnosis and care Six-panel brochure on brain donation covering benefits, questions, results, and planning Two-page handout of frequently...

The Dementia and the Brain section of the UCSF Memory and Aging Center website provides an overview on dementia, causes, types, treatment, and links to more resources, including a 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. The section also includes a list of medical terms and definitions.

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.

Produced between 2006 and 2015, the "Volunteer News" newsletter of the University of Kentucky Alzheimer’s Disease Center (UK-ADC) featured news about active studies, summaries of research findings and presentations, Center staff, and upcoming events. Issues also included brain teasers.

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.

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...

A colorful one-page flyer invites “four friends over 60” to visit the University of Pittsburgh Alzheimer’s Disease Research Center for 4 hours per year to fight Alzheimer’s disease. The flyer describes the components of a comprehensive evaluation participants will receive, which includes personalized feedback. A contact name and phone number are provided.

A one-page flyer invites potential volunteers to learn more about participating in a federally funded research study. It lists the free clinical services they will receive, perks such as free parking, and a promise of confidentiality. A contact name and phone number are given.

The Memory & Aging Project (MAP) at Knight Alzheimer’s Disease Research Center (Knight ADRC) at Washington University in St. Louis was started in 1979 and studies intellectual functioning in persons as they age. The ADRC has a number of materials promoting this study, including: A full-color folded brochure that provides an introduction to MAP and the Knight ADRC and covers what to consider before volunteering. The brochure also includes an infographic about the ADRC and contact information. A...

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.

Outreach materials for the Anti-Amyloid Treatment in Asymptomatic Alzheimer's (A4) Study at Penn Memory Center include: A customizable flyer for study sites A full-color promotional ad targeting prospective African-American participants A 4-minute radio interview about the center's active recruitment of African-American participants

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.

“Take a Closer Look” is a 12-page guide for participants in the REVEAL-SCAN Study and their study partners. Topics covered are Alzheimer’s disease dementia, amyloid, study steps and procedures including cheek swab and PET scan, and benefits and risks for participants. A one-page flyer on the SCAN study is also available.

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.

These suggestions offer dos and don’ts for friends and family members of people with Lewy body dementia. Tips cover everyday caregiving, communication, and medical care.

To facilitate recruitment and retention of participants, the Michigan Alzheimer’s Disease Research Center (MADRC) hosts an annual appreciation luncheon for research volunteers and their families, donors, and community partners. MADRC evaluates this activity by soliciting feedback from attendees on their satisfaction with the event (e.g., content, format, and materials) and suggestions for future topics.

Registry participants receive an information packet including contact information for Michigan Alzheimer’s Disease Research Center (MADRC) staff, brochures on relevant clinical services and education/wellness programs, and a list of currently recruiting studies. Appreciation for volunteers’ commitment is shown through birthday cards, holiday cards, and an annual gift to promote brain/physical health, such as a pedometer.

The Brain Autopsy and Donation Program in the Michigan Brain Bank (MBB) provides individuals and families an opportunity to contribute to research. Participants are eligible if they are enrolled in an affiliated study or were seen by a neurologist at the University of Michigan. Information packets consist of a brochure, a booklet explaining the brain autopsy program, a wallet-sized information card, and refrigerator magnet. When the participant dies, the next-of-kin is sent a pathology report...

This eight-page brochure from the Wisconsin Alzheimer's Disease Research Center encourages people to volunteer with the center's brain donation program.

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 poster from the Wisconsin Alzheimer’s Disease Research Center (WADRC) encourages participants to refer friends and family members to volunteer to participate in clinical trials. The poster indicates that WADRC is recruiting people with mild cognitive impairment and people ages 45-65 with or without parental history of Alzheimer’s. The poster includes contact information and is distributed at ADRC participant events.

The "Vital News" newsletter is a biannual publication of the Wake Forest School of Medicine Alzheimer’s Disease Research Center that provides information to current, former, and potential study participants. It is mailed hard-copy to more than 16,000 recipients.

The All of Us Research Program has many resources, such as videos, social media postings, and websites.