Alzheimer's & Dementia Outreach, Recruitment & Engagement Resources
Cognitive Status
Resources per page:
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- This decision aid from AGREEDementia helps patients with MCI decide whether or not to undergo brain amyloid imaging.
- Researchers looked at how enrollment factors made a difference, broken out by race, on the progression of mild cognitive impairment and dementia. Using Alzheimer’s Disease Research Center data, they examined the rate of impairment between white participants and Black participants with age-at-progression survival models.
- According to the article authors, the ideal participants for Alzheimer's disease clinical trials would show cognitive decline in the absence of treatment (i.e., placebo arm) and also would be responsive to the therapeutic intervention being studied (i.e., drug arm). This investigation tested whether machine learning models can effectively predict cognitive decline in people with mild to moderate Alzheimer’s disease during the timeframe of a phase III clinical trial. Data from 202 participants...
- This article describes the study design of a dual-objective, Phase III clinical trial in individuals presymptomatic for Alzheimer’s disease. It addresses the particular challenges for delay and prevention studies. These include: Ensuring that the trial population, cognitively normal at outset, contains a sufficient number of participants at increased risk of cognitive impairment onset during the trial time frame to avoid prohibitive trial size and duration. Finding appropriate measures to detect...
- This article describes the methodology and initial recruitment findings for a study that estimated prevalence of cognitive impairment and dementia in Mexican Americans compared with non-Hispanic white people in Nueces County, Texas. The study was aligned with the parent BASIC project, a population-based epidemiological stroke surveillance project, funded by the National Institutes of Health since 1999 to identify differences in stroke prevalence among Mexican Americans and non-Hispanic Whites...
- This audiovisual novella presents the story of a Mexican family that is struggling to figure out what is wrong when their patriarch starts to forget things.
- In collaboration with Nuestra Casa, a local community health advocacy organization, the Stanford Alzheimer’s Disease Research Center (ADRC) designed and successfully implemented a dementia awareness campaign in East Palo Alto, CA. The largely Latino community near Stanford had little knowledge of dementia and its consequences. This article describes the community-based participatory research model that was used to create materials and training for 20 promotoras (community outreach workers). The...
- 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.
- To address the challenges of recruiting patients into early-phase trials of mild cognitive impairment and Alzheimer’s disease, a memory clinic was implemented within the clinical trials unit of a biopharmaceutical company.
- This 3-minute video features Dan Gasby, who with his wife, the celebrity B. (Barbara) Smith, has advocated for greater public awareness of the disease and for participation in clinical trials. Smith was diagnosed with early Alzheimer’s disease in 2014.
- 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.
- One-page flyer that lists monthly topics for the Facebook Live Series, "Ask the Doc: Alzheimer's Research Today."
- 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.
- The Wisconsin Registry for Alzheimer's Prevention is a longitudinal observational cohort study enriched with people with a parental history of probable Alzheimer's dementia. Since late 2001, this registry has enrolled 1,561 people at a mean age of 54 years. Participants return for a second visit 4 years after baseline, then every 2 years. Eighty-one percent of participants remain active in the study after 9 years of follow-up. Assessments of cognition, self-reported medical and lifestyle...
- High rates of attrition in longitudinal studies of Alzheimer's disease and related dementias may cause researchers to underestimate dementia prevalence and skew the characterization of the disease, comprising the generalizability of the results. To explore predictors of attrition, this study examined the National Alzheimer's Coordinating Center (NACC) Uniform Data Set, a repository of observations of older adults spanning 11 years. Four samples were examined. The researchers found that worsening...
- This article describes the challenge of recruiting to clinical trials and studies healthy volunteers without symptoms of Alzheimer's disease, especially African Americans. To find a solution, the authors used a community engagement approach to create a registry of 2,311 research-ready, healthy adult volunteers who reflected an ethnically diverse local community in North Carolina. The approach had varying levels of success in establishing a large, diverse pool of individuals who were interested...
- 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.
- TabCAT is a software platform developed at the University of California, San Francisco that provides tablet-based neuropsychological tests translated into 10 languages. Tools available include cognitive tests of executive function, memory, visuospatial skills, and socioemotional functions, as well as symptom questionnaires.
- This NIA video series covers topics about participating in Alzheimer's disease research.
- The 36-second time-lapse video shows the progression of Alzheimer's disease in the brain.
- 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...
- This article assesses the psychometric properties of the University of California, San Diego Brief Assessment of Capacity to Consent (UBACC) when used in individuals thinking about participating in Alzheimer’s disease research. The UBACC was administered to a sample of individuals with mild to cognitive impairment and a sample of healthy controls as part of a broader study to evaluate perceived burden of research participation. Researchers concluded that the UBACC shows promise when used to...
- 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.
- 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...
- Fifty cognitively normal participants were interviewed about barriers and facilitators to joining an Alzheimer's disease prevention trial after being randomized to one of two hypothetical Alzheimer’s disease risk scenarios: 1) the general age-related risk for Alzheimer’s disease, or 2) being at 50 percent increased risk for Alzheimer’s disease. Thirteen themes of facilitators and five themes of barriers were identified. The most common barrier was fear related to taking the study drug...
- 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 website, from the National Institutes of Health Clinical Center, provides a searchable database of clinical trials. The site serves as a registry of publicly supported clinical studies conducted mostly in Bethesda, MD.
- 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 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 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.
- A checklist written in Spanish that provides important steps to take after an Alzheimer's Diagnosis.
- This comprehensive evaluation summary is provided to each longitudinal cohort participant after an annual visit.
- "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...
- This 39-slide presentation provides an explanation of Alzheimer’s disease, addresses the question of why more women than men are affected by the disease, reviews risk-reduction strategies for women, and describes research conducted at the UC Irvine Institute for Memory Impairments and Neurological Disorders (UCI MIND).
- 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.
Resources per page:
- 10
- All