Addressing Stigma To Improve Lives Of Alzheimers Disease Patients
When people hold negative beliefs or attitudes about Alzheimers disease, they may stereotype, isolate, or discriminate against patients. Even when intentions are good, people can still patronize or pass unfair judgments about an individuals abilities. The patients themselves feel poorly about themselves. This is stigma.
Molecular Brain Changes Linked To Apoe4 The Main Susceptibility Gene For Alzheimer’s Disease
by Keck School of Medicine of USC
Recent breakthroughs have revealed a great deal about Alzheimer’s disease, but researchers have yet to paint a complete picture of how genetic risk for the illness causes the brain damage that ultimately leads to memory loss and cognitive decline. A new study from the Keck School of Medicine of USC, just published in the Journal of Experimental Medicine, adds a crucial piece to that puzzle. It documents, in real time, that APOE4, the main susceptibility gene for Alzheimer’s disease, leads to molecular changes in the brain’s blood vessels, which are then followed by changes in the synapses that connect brain cells. The study also suggests potential targets in blood vessels for treatment early in the disease processbefore cognitive decline occurs.
It is well established that APOE4, a variant of the apolipoprotein E gene, carries a strong risk for Alzheimer’s disease. Research has already shown that APOE4 causes problems with the blood-brain barrier, a protective layer that prevents toxic substances from entering the brain. Damage to the blood-brain barrier in turn predicts cognitive decline, according to studies in both humans and animal models. But until now, the details of that process were fuzzy.
“Understanding the order of eventswhat’s happening first, what’s happening nextis very valuable, because it had not yet been shown how changes in the blood-brain barrier relate to synaptic dysfunction at this molecular level,” Zlokovic said.
Challenges For The Alzheimers Research Community
Even with the progress that weve made, there’s still a lot of work to do before we can find treatment and prevention strategies for the millions of people affected by Alzheimers and related dementias. These devastating diseases are highly complex conditions caused by an interplay of genetic, lifestyle, and environmental factors. They usually develop gradually changes in the brain take place over years and even decades, long before the first symptoms appear. This complexity presents challenges to the discovery and development of new drugs and other prevention and treatment approaches. Alzheimers disease does not affect all communities at the same rate, and research has found that a persons likelihood of getting Alzheimers can be affected by their sex, ethnicity, race, socioeconomic status, and other factors. These differences are called health disparities.
Researchers believe Alzheimers disease and related dementiaswill likely require multipletreatments customized to individuals.We also know that as the older adult population continues to grow aging remains the most important risk factor fordementia we will see increased numbers of people living with these diseases. Thats why thousands of researchers around the country are working on this issue.
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What Is A Professional Judgment Budget
Each year NIH submits a professional judgment budget that estimates the additional funding needed to advance NIH-supported research into the treatment and prevention of Alzheimers disease and related dementias. The report also summarizes progress and promising research opportunities. Only two other areas of biomedical research cancer and HIV/AIDS follow a similar process designed to accelerate research discovery. This approach is often referred to as a bypass budget because of its direct transmission to the President and then to Congress without modification through the traditional federal budget process.
Who Funds Alzheimers And Related Dementias Research
The National Institutes of Health is made up of Institutes, Centers, and Officesthat conduct and fund research into all aspects of human health. The National Institute on Aging leads NIHs efforts in clinical, behavioral, and social research in Alzheimers and related dementias through efforts aimed at finding ways to treat and ultimately prevent the disorder. NIA collaborates closely with the National Institute of Neurological Disorders and Stroke , which manages a research portfolio targeting Alzheimers disease-related dementias.While some of this research takes place in NIH laboratories, the vast majority of NIH support is provided through a competitive grants process to institutions and small businesses across the country. Other federal agencies support a range of activities focused on public health and community programs.
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The Baltimore Longitudinal Study Of Aging
Find information on the longest-running longitudinal study of human aging. The Baltimore Longitudinal Study of Aging has been running continuously since 1958. Today, the BLSA is world-renowned, having generated thousands of scientific papers and made major contributions to our understanding of what it means to get older. Learn about BLSA history and findings.
A Study To Assess Safety And Target Engagement Of E2814 In Participants With Mild To Moderate Cognitive Impairment Due To Dominantly Inherited Alzheimer’s Disease
Sorry, in progress, not accepting new patients
The primary objective of the study is to assess the safety and tolerability of intravenous infusions of E2814 in participants with dominantly inherited Alzheimer’s disease , and to evaluate target engagement of E2814 on microtubule binding region -tau species in cerebrospinal fluid in participants with DIAD.
La Jolla, California and other locations
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Research & Clinical Trials
Research is crucial to understanding mild cognitive impairment and dementia. Through clinical trials and studies, scientists and the medical community are better equipped to serve people living with cognitive issues and their support systems. To significantly reduce the burden of neurological diseases for future generations, the Goizueta Alzheimer’s Disease Research Center partners with affected communities to conduct innovative research.
Our goals include:
- Cultivating a better understanding of MCI
- Achieving the ability to diagnosis cognitive issues earlier in a patient’s life to more quickly begin treating and managing memory disorders
- Involving persons who are often underrepresented in research, such as members of the African American community
To achieve these goals, some of our studies need research volunteers. Research volunteers help us investigate how memory changes during the aging process, for volunteers living with or living without MCI or dementia.
Research activities include a variety of preclinical and clinical studies as well as research for family caregivers.
Why Is Diversity Important In Clinical Trials
Researchers need participants who represent all types of races and ethnicities, genders, geographic locations, and sexual orientations.
When research involves a group of people who are similar, the findings may not apply to or benefit everyone. When clinical trials include diverse participants, the study results may have a much wider applicability.
Having diverse people in studies can help researchers understand how dementia affects certain groups, why some communities are disproportionately affected by certain dementias, and which treatments or prevention strategies may be most effective in particular groups.
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Typical Day: Living With Mild Cognitive Impairment
Tigist Hailu was planning a capstone project while pursuing her Master of Public Health degree when she learned of the importance of Whats a typical day? The PMC coordinator for diversity in research and education wanted to build an engaged community of research participants who, through photography and stories, could change the way others think about Alzheimers disease research by adding a touch of humanity. Hailu hoped her work would lead to an increase in participation in this research, especially for African-Americans.
Are There Any Bad Side Effects From Alzheimers Drugs
The drug aducanumab-avwa is the first and only therapy that targets the fundamental pathophysiology of Alzheimer’s disease by reducing amyloid beta plaques in the brain. It is for use in those with early stages of Alzheimerâs and with confirmed presence of amyloid pathology. It may cause swelling of bleeding in the brain.
A person with Alzheimer’s may be taking medicines to treat their symptoms and other health problems they have. But when they take many medications at once, thereâs a higher chance theyâll have a bad reaction to them. The problems can include confusion, agitation, sleepiness or sleeplessness, mood swings, memory problems, and upset stomach.Some people who have severe symptoms of Alzheimer’s disease — such as aggressive behavior or hallucinations â may need stronger medicine to keep their problems under control. But some of these drugs can make their other Alzheimerâs symptoms worse. For example:
- Some drugs such as benzodiazepines can cause confusion, memory trouble, and slowed reactions, which can lead to falls.
- Some medicines that treat depression can cause sedation and other side effects.
- These drugs may react with medicines that treat Alzheimer’s disease, including donepezil , galantamine , memantine , and rivastigmine .
- Some medicines that treat hallucinations can cause sedation, confusion, and drops in blood pressure.
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Is Obstructive Sleep Apnea Important In The Development Of Alzheimer’s Disease
open to eligible people ages 65-85
Obstructive sleep apnea is common in older adults and has recently been implicated in pathogenesis of Alzheimer’s disease . Research has shown that sleep disruptions have caused memory impairment. Sleep apnea is a form of sleep disruption. We would like to examine how obstructive sleep apnea may contribute to the progression of Alzheimer’s disease.
La Jolla, California
Why Should I Consider Donating My Brain
Brain donation provides your loved ones with a definitive diagnosis. This may offer your family closure and help them assess their risk for developing Alzheimer’s disease and/or related dementias.
Additionally, it is a gift for future generations. Your donation will increase the chances that better diagnostic tools and treatment options are developed for Alzheimer’s disease and related dementias. Brain donation is of greater value if we understand the changes in a persons brain health over time. If you or a loved one is interested in brain donation, please contact us at or for information on becoming a participant in our clinical research study.
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Dominantly Inherited Alzheimer Network Trial: An Opportunity To Prevent Dementia A Study Of Potential Disease Modifying Treatments In Individuals At Risk For Or With A Type Of Early Onset Alzheimer’s Disease Caused By A Genetic Mutation Master Protocol Dian
open to eligible people ages 18-80
The purpose of this study is to assess the safety, tolerability, biomarker and cognitive efficacy of investigational products in subjects who are known to have an Alzheimer’s disease-causing mutation by determining if treatment with the study drug slows the rate of progression of cognitive impairment and improves disease-related biomarkers.
La Jolla, California
The Paradigm Shift Towards Prevention And Early Treatment Of Alzheimers
Current Alzheimers treatments focus on addressing the symptoms of those people in later stages of disease. The science around the benefit of disease prevention, risk reduction and disease modification suggests there is a significant opportunity to expand upon the current research and increase healthcare systems focus to populations at the earliest stages of the disease. Evaluating the overall investment needed and the socioeconomic value of a paradigm shift from merely treating symptoms to slowing the progression of and preventing the disease requires a better understand- ing of the overall patient population size and target populations for DMTs. The findings of this study can offer a starting point for the future assessment of AD burden and disease distribution across subgroups. PAVE hopes these estimates will inform prevalence-based approaches to value assessment of new innovations in AD. Without accurate definitions for, and numbers for the subgroups of the AD patient population or a full understanding of the broader socioeconomic burden of AD, health care systems and payers will remain ill-equipped to effectively assess the full value of expected new diagnostic tools and therapies for Alzheimers disease.
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Research Study On Light Therapy To Help Metabolism And Memory
Researchers at the Diabetes, Obesity and Metabolism Institute and the ADRC are recruiting participants over the age of 55 with a diagnosis of probable early Alzheimers Disease or Mild Cognitive Impairment and sleep disturbance to test if light treatment comparable to sunlight in your home improves cognition, sleep and metabolism. Participants will be randomly assigned to either bright or dim light in their home on a daily basis for 6 months. The duration of the study is about 12 months. You are not eligible if you require insulin, have urinary incontinence, are blind or suffer from severe eye disease. There will be 6 visits total for the completion of the study visits . Visits will include blood and urine testing, assessment of sleep and light exposure via a wearable watch, and a 3-hour test of how your body uses sugar. There is no cost to participate in the study. You will be reimbursed for the time you spend participating. For more information, please contact study coordinator Aislinn Diaz at 212-659-9693. PI: Mariana Figueiro, PhD, D HS# 18-00883 GCO 17-2685.
A Clinical Trial Of Aav2
open to eligible people ages 50-80
This is a first-in-human clinical trial to test whether a protein administered into the brain continuously by gene therapy, Brain-Derived Neurotrophic Factor , will slow or prevent cell loss in the brains of people affected by Alzheimer’s disease and Mild Cognitive Impairment. The protein may also activate cells in the brain that have not yet deteriorated. Gene therapy refers to the use of a harmless virus to have brain cells make the potentially protective protein, BDNF.
San Diego, California
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Learn More About Brain Donation
Nina Silverberg, the director of the Alzheimers Disease Centers program at the NIHs National Institute on Aging, says that a donation is of much more value if we know about the person when theyre livingthat is, if the person has participated in a longitudinal study of brain function. Silverberg explains that the Alzheimers Disease Centers conduct annual tracking assessments that include cognitive, neurological, behavioral and linguistic tests for observing the changes in brain function as people age.
“Another major challenge, Silverberg says, is obtaining tissue from donors of varied backgrounds. Theres a stigma in some cultures around even talking about donating organs, or even death at all, but its tremendously important that we get diverse populations to donate their brains, so that resulting treatments are broadly applicable, she says.
Alzheimer’s Disease Research Center
Focusing on research, education and potential treatments aimed at preventing Alzheimers disease and late-life cognitive decline.
Sticht Center for Healthy Aging and Alzheimer’s PreventionWake Forest Baptist Medical CenterMedical Center Boulevard
Alzheimers disease is a type of dementia and is NOT a normal part of aging. It is a neurodegenerative disease, which means that it progressively gets worse over time. Once the disease damages the brain, it is very difficult to overcome the loss of memory and mental function. Early diagnosis and intervention is needed to improve quality of life and either slow or halt the course of the disease. Our researchers are trying to understand the causes and early signs of Alzheimers disease.
The Wake Forest Alzheimers Disease Research Center focuses on research, education and potential treatments aimed at preventing or slowing Alzheimers disease. Our ADRC has a special focus on early intervention and understanding the role of disorders such as hypertension and diabetes in Alzheimers disease. We also work to increase clinical study enrollment of people who are at increased risk and not adequately represented in clinical research. The Center benefits our region by providing education to health professionals, researchers, clinical study participants and their families, and the community at large.
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Improving Detection And Diagnosis
Technology for Early Dementia Diagnosis
Researchers at the VA Geriatric Research, Education, and Clinical Centers are studying wearable technologies that may be useful to help diagnose Alzheimer’s disease and dementia with Lewy bodies.
ELIGIBILITY
You may qualify for this study if you meet these requirements:
-Have a diagnosis of Alzheimer’s disease or probable dementia with Lewy Bodies
-Have a friend, family member, or caretaker who is able and willing to answer questions about you
-Have at least 8 years of education
COMPENSATION
Volunteers who complete this study will receive up to $250 in appreciation for their time and participation.
CONTACT
Study Contact: Sarah Payne | 206.277.1379
Study PI: Debby Tsuang, MD, Professor, UW Psychiatry & Behavioral Sciences/ Leader of the Dementia with Lewy Body Consortium Study site at the VA Puget Sound Health Care Center/UW
For More Information
The Dementia with Lewy Bodies Consortium Study
The Dementia with Lewy Bodies Consortium Study
You may qualify for this study if you:
-Have a diagnosis of probable dementia with lewy body/MCI or Parkinson’s disease dementia
-Have a study partner who is able and willing to comply with required study procedures
-Have at least eight years of education
The study doctor will also check for other medical conditions or reasons that might prevent you from participating in the study
Seattle StudyContact: Sarah Payne | 206.277.1379
For More Information
The Remote Cog Study
Recruitment And Retention Resources
Find materials to support the recruitment and retention of participants into clinical trials and studies using the Alzheimerâs and Dementia Outreach, Recruitment, and Engagement Resources. Materials in this searchable, online collection include recruitment plans, communication materials, toolkits and guides, videos, and related research articles.
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Clinical Research Study Investigator’s Toolbox
The NIA Clinical Research Investigator’s Toolbox is to provide a Web-based information repository for investigators and staff involved in clinical research. The Toolbox contains templates, sample forms, guidelines, regulations and information materials to assist investigators in the development and conduct of high quality clinical research studies.
Icipate In A Clinical Research Study
The Wake Forest Alzheimers Disease Research Center is enrolling clinical research participants in the Healthy Brain Study. The purpose of this study is to follow participants over time, collecting cognitive data, brain images and biological samples at regular intervals to better understand what constitutes brain aging and which risk factors lead to Alzheimers disease. The Healthy Brain Study is enrolling a diverse group of people with emphasis on participants with mild cognitive impairment and those from underrepresented groups. The ADRC and the Healthy Brain Study support additional clinical studies on cognitive decline and Alzheimers disease by referring our well-characterized participants and sharing scientific expertise. If you or someone you know is interested in participating in one of these currently enrolling studies, please call .
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