A free teleconference series offered by UsAgainstAlzheimer's Network covering a wide range of topics with leaders in the Alzheimer's community.
There is a strong connection between Down syndrome and Alzheimer’s disease, and understanding this connection has the potential to lead to major advances in preventing or treating Alzheimer’s – both for individuals with Down syndrome and for the population as a whole.
Dr. Michael Harpold is Chief Scientific Officer of the LuMind Research Down Syndrome Foundation. He joined us for this month’s Alzheimer’s Talks call to discuss why individuals with Down syndrome experience Alzheimer’s disease earlier and at a much higher incidence and to talk about the latest research advances, including a groundbreaking new clinical trial and how this work can hopefully help find a treatment for everyone.
Key highlights from the call:
People with Down syndrome are now living longer. Life expectancy for people with Down syndrome has increased dramatically since the 1980s from fewer than 30 years to 60 years, due to medical advances and more inclusionary interventions and policies.
There is a strong connection between Down syndrome and Alzheimer’s disease. The amyloid precursor protein (APP), which plays a major role in the development of Alzheimer’s disease, is located on chromosome 21, the extra chromosome that causes Down syndrome. This could represent an effective potential drug target for Alzheimer’s disease.
People with Down syndrome could provide key information about Alzheimer’s. Many researchers now believe that early intervention will be crucial to prevent or treat Alzheimer’s. Virtually everyone with Down syndrome develops the neuropathology of Alzheimer’s disease by their 40s. There are more than 350,000 people in the U.S. with Down syndrome who will develop or are living with Alzheimer’s disease. They develop the pathology and symptoms 20 to 25 years earlier than the general population.
A groundbreaking new clinical trial for Alzheimer’s in individuals with Down syndrome is about to begin. The trial will look at ACI-24, an anti-Abeta vaccine that was developed by AC Immune and overcame characteristic neurodegeneration and restored memory deficits in a mouse model with no inflammatory side effects. There is a Phase I/II trial of this vaccine with Alzheimer’s patients in Scandinavian countries, but this will be the first trial specifically for individuals with Down syndrome.
Thank you to Dr. Michael Harpold for sharing his important research. For more information, listen to the audio playback or read the transcript of our conversation.
Thank you also to the Zickler Family Foundation and Karen and Chris Segal for their generous support, which made this call possible.
On Wednesday, November 18, Alzheimer’s Talks will welcome Dr. Larry Goldstein, Director of the Sanford Stem Cell Center and Distinguished Professor in the Department of Cellular and Molecular Medicine at University of California, San Diego. He will discuss the stem cell-based models of disease and his work in using stem cells to fight against Alzheimer’s. Click here to register for the November Alzheimer’s Talks.
Though only about one percent of the population have a rare, genetically inherited form of Alzheimer’s disease, studies with this population give scientists great insight into how the disease works as well as ways to prevent and treat it in the general Alzheimer’s population.
Dr. Randall Bateman is the Charles F. and Joanne Knight Distinguished Professor of Neurology at the Washington University School of Medicine and Director of the Dominantly Inherited Alzheimer’s Network Trials Unit (DIAN-TU), which aims to prevent the onset of cognitive impairment by launching the first clinical trials for this population. He joined us for this month’s call to describe the study, and discuss its implications for the broader population of people who have, or may get, Alzheimer’s disease.
Key highlights from the call:
- Alzheimer’s was historically studied as a rare disease that occurred in younger people. In the 1970s and ‘80s, researchers realized the same disease was also occurring in older people as well, and in a much larger percentage of the population.
- DIAN-TU is the first ever prevention trial in Alzheimer’s disease. In this global network of patients with dominantly inherited Alzheimer’s disease, researchers are able to predict not just who will get the disease but when they will get it, which has allowed them to launch the first prevention trial in Alzheimer’s disease. The main goal is to try to prevent cognitive loss, and information from this study will have applications for all people with Alzheimer’s.
- Different biomarkers are being tested in this trial. This may lead to shortcuts that will allow us to test many more drugs.
- People in this study may respond better to treatments. Dominantly inherited Alzheimer’s strikes at a young age, so patients are less likely to have other diseases or health issues. This makes them a pure population to study and gives excellent information about drug efficacy.
- Researchers are optimistic that we are close to a treatment. Even penicillin failed its first few clinical trials, meaning it is important to find the right dose and the right patients. We have information that is pointing us in the right direction, so it is important to double down efforts to bring together researchers and public-private partnerships and increase the number of trials. With increased funding and research, we could have a possible treatment as soon as a few years from now.
People who come from families who have these mutations are eligible to join the trial. If you think that your family has a high prevalence of Alzheimer’s disease that strikes people at a young age, typically less than age 55, visit www.DIANexr.org, to learn more about this study, or you can contact them directly at 1-844-342-6397 or by email at Dianexr@wustl.edu.
If you don’t qualify for this specific trial, other resources mentioned by Dr. Bateman include: The Alzheimer’s Prevention Registry and The A4 Study. Dr. Bateman also provided the information for the National Society for Genetic Counselors, which has a ‘find a genetic counselor’ tool.
Thank you to Dr. Randy Bateman for sharing his important research. And a very special thank you to donations from Karen and Chris Segal and the Zickler family foundation, which made this call possible.
If you missed the talk – or if you’d like to hear it again – you can listen to an audio playback or read the transcript of our conversation.
Sixty percent of people with late-life depression also suffer from some form of cognitive impairment, and research shows depression is linked to a faster decline into dementia. But the mechanisms that connect depression and Alzheimer’s are still a mystery.
Dr. Scott Mackin is one of the researchers working to shed light on the link. He’s the Principal Investigator on The Alzheimer’s Disease Neuroimaging Initiative - Depression Project (ADNI-D) and Associate Professor of Psychiatry at the University of California, San Francisco School of Medicine, and this month he joined us on Alzheimer’s Talks to share his fascinating research.
Here are some key highlights from the call:
1. Depression is a serious health problem for older adults. Up to 15% of older adults have clinically significant depression, with symptoms that impair cognition and daily functioning. Sixty percent of patients with depression suffer from cognitive impairments, and late-life depression is associated with more rapid rates of cognitive decline.
2. Despite the strong link, depression is often excluded from studies on dementia. Because depression and Alzheimer’s can involve similar symptoms, individuals with depression are often excluded from Alzheimer’s studies, leaving researchers with little data on the link between depression and cognitive decline. The ADNI-D study aims to address that gap.
3. ADNI-D is testing several hypotheses about the mechanism that links depression with cognitive decline. White matter lesions, cortical atrophy, blood flow reduction, amyloid deposition and biomarkers are all possible pieces of the biological puzzle linking these diseases.
4. Sharing and combining data is important – and ground-breaking. ADNI has pioneered data-sharing, using standardized protocols to allow researchers to combine data sets and build on existing work.
5. Depression is treatable. Some cognitive symptoms – particularly information processing speed – can even be reversed with treatment. There are a number of effective treatments, so if you’re concerned you might have depression, talk to your primary care physician!
6. You can help the search for a cure. The ADNI-D study is recruiting now at study locations in San Francisco and Pittsburgh. To find out more about how to get involved, call 415-476-7046 (California) or 412-246-6487 (Pennsylvania).
You can also help researchers by signing up for the Brain Health Registry, an online registry that lets you share data with researchers working on brain health by filling out questionnaires and playing online “brain games.” Sign up here!
Thank you to Dr. Scott Mackin for sharing his fascinating research with us! If you missed the talk – or if you’d like to hear it again – you can listen to an audio playback or read the transcript of our conversation.
Some people say once a person has Alzheimer’s, he or she becomes a stranger, losing the pieces of his or her personality we knew and loved before. But when Dr. Harry Kozol, a respected psychiatrist and neurologist, was diagnosed, his son Jonathan Kozol was struck by his father’s resilience and learned to connect with him during the various stages of decline.
During this special edition of Alzheimer’s Talks, award-winning author Jonathan Kozol shared his experiences caring for his father and discussed his new book, The Theft of Memory: Losing My Father, One Day at a Time.
Here are some key highlights from the call:
1. On real conversations: Jonathan made a point to have real conversations with his father and found caregivers who also valued these quality interactions: making jokes, speaking up when they disagreed with him and avoiding a sing-song voice. His father’s gift for conversation and repartee didn’t completely abandon him for a long time, and the jokes and discussions helped keep him alert and engaged. It is important to not speak as if the person with Alzheimer’s is not there or can’t hear what is being said.
2. On getting appropriate medical care: It is important to keep advocating for the person with Alzheimer’s disease. Jonathan and his caregivers had trouble getting his doctor's attention, which may partly be due to not enough doctors becoming geriatricians.
3. On end-of-life conversations: Jonathan’s father lived to be 102, and Jonathan was glad he was able to have a long life. But to Jonathan, end-of-life conversations with medical professionals felt focused more on economics than on any other factors.
4. On memory: Scholars think memories aren’t fixed, accurate depictions of what happened; instead, they’re reconstructed out of bits and pieces each time we think of them. While writing his book, Jonathan was able to review his father’s extensive records and correspondence to confirm the accuracy of his retelling of his father’s experiences.
5. On dementia-friendly communities: Jonathan discussed the importance of educating the public in respecting the dignity of every human being no matter how they falter, and to work with the major medical schools to entice more people to come into the field of geriatrics.
We’d like to thank Jonathan Kozol for taking the time to share his experience and insight with us. If you missed the talk – or if you’d like to hear it again – you can listen to an audio playback or read the transcript of our conversation.
On August 19, Alzheimer's Talks will welcome Dr. Scott Mackin, Associate Professor of Psychiatry at University of California, San Francisco School of Medicine and Principal Investigator for the Alzheimer's Disease Neuroimaging Initiative Depression Project (ADNI-D), which looks at how mental illness and late-life depression relate to cognitive decline. Dr. Mackin will share the scientific research behind the study and information about enrolling participants. Sign up here to join this fascinating conversation!
With new imaging technology and a greater understanding of the progression of Alzheimer’s guiding clinical trials, there’s hope on the horizon for Alzheimer’s treatment and prevention.
In July’s fascinating Alzheimer’s Talks, Dr. Michael Rafii – Medical Director of the Alzheimer’s Disease Cooperative Study (ADCS), Director of the Memory Disorders Clinic and Assistant Professor of Neurosciences at the University of California, San Diego, and Attending Neurologist at the Shiley-Marcos Alzheimer’s Disease Research Center – joined us to discuss his exciting work on the NOBLE and A4 studies, coordinated by the ADCS.
Here are some key highlights from the call:
- The hallmarks of Alzheimer’s disease are plaques and tangles. Amyloid – which starts as a free-floating molecule that then deposits into plaques – causes changes in the protein “scaffolding” of neurons, resulting in neurofibrillary tau tangles.
- There are several ways to target Alzheimer’s, depending on the stage of the disease: preclinical, prodromal (mild cognitive impairment) or dementia. These include increasing removal of beta-amyloid and/or preventing the beta-amyloid from disrupting tau.
- Better imaging helps us spot biomarkers such as amyloid and tau tangles and test the effectiveness of new compounds. Being able to identify biomarkers has revolutionized our ability to see the disease at its earliest stages and test possible interventions.
- The A4 Study is focused on stopping Alzheimer’s before symptoms appear. The anti-amyloid immunotherapy being tested aims to remove beta amyloid from the brain, preventing the formation of tangles before symptoms begin. The A4 study is a nationwide trial open to people between the ages of 65 and 85 who aren’t currently experiencing any cognitive or memory problems but are at risk of developing Alzheimer’s. You can learn more at a4study.org.
- The NOBLE Study aims to treat those with mild to moderate Alzheimer’s. It’s testing a neuroprotectant pill to interfere with the development of tau tangles. The NOBLE trial is open to people between the ages of 55 and 85 who already suffer from mild to moderate Alzheimer’s. You can learn more at noblestudy.org.
The clinical trials underway are building up critical evidence for the FDA approval process, and Dr. Rafii is optimistic that these compounds are some of the best we have. But we won’t see the results until they have recruited enough participants.
If you don’t qualify for either of these studies but would like to know more about clinical trials, you can contact the ADEAR (Alzheimer’s Disease Education and Referral Center) hotline, sponsored by the National Institute on Aging: 1-800-438-4380.
If you missed the talk with Dr. Rafii – or if you’d like to hear it again – you can listen to an audio playback or read the transcript of our conversation.