A free teleconference series offered by UsAgainstAlzheimer's Network covering a wide range of topics with leaders in the Alzheimer's community.
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.
Previous research has shown that NSAIDS, a class of anti-inflammatory drug, can help prevent Alzheimer’s in cognitively normal people, but it wasn’t clear why. NSAIDs do not work once any memory loss has begun, so this is a real preventive effect. Now, exciting new research has identified a potential culprit - malfunctioning immune cells in the brain. This discovery has opened up new avenues for treatment.
In June’s Alzheimer’s Talks, we were joined by Dr. Katrin Andreasson, Professor of Neurology at University of Stanford, who has led groundbreaking research investigating the role of microglia, the brain’s immune cells, in Alzheimer’s disease.
Here are some key highlights from the call:
- The pathologies of Alzheimer’s can start in early-to-mid adulthood, but are clinically silent for decades. That’s actually good news: If researchers can identify who is at risk, they have plenty of time to intervene before symptoms begin.
- NSAIDS – non-steroid anti-inflammatory drugs – seem to help prevent Alzheimer’s in cognitively normal aging populations. This suggests that the prodromal stage leading up to Alzheimer’s disease involves an inflammatory response.
- Microglia are the brain’s immune system, cleaning up debris and regulating inflammation. They clear A-beta protein, a precursor of amyloid plaques, but they lose function with age.
- A particular receptor, EP2, may predispose to developing Alzheimer’s. In Alzheimer’s mouse models, EP2 increases inflammation, suppressing microglial function and allowing amyloid to build up.
- Inhibiting EP2 restores healthy microglial function. In mice, removing the EP2 receptor decreased inflammation and amyloid buildup and restored memory.
Dr. Andreasson stressed that we’re still years away from a viable treatment based on this discovery – and that without increased funding for the National Institutes of Health, moving to human trials will take even longer.
In the meantime, we can keep inflammation down in other ways that might help prevent or delay Alzheimer’s: A healthy diet low in sugars and fats, exercising, and getting enough sleep all help decrease inflammation.
We’re grateful Dr. Andreasson was able to share some of her findings from this exciting research. If you missed the talk with Dr. Andreasson – or if you’d like to hear it again – you can listen to an audio playback or read the transcript of our conversation.
This month, we were lucky to have four guests join us to help explain the power the arts can have for patients and caregivers coping with the symptoms of Alzheimer’s:
Sunil Iyengar, Director, Office of Research & Analysis at The National Endowment for the Arts
Gary Glazner, Executive Director of the Alzheimer's Poetry Project
Anne Basting, Founder and President of the TimeSlips Creative Storytelling Project
Dr. Kate de Medeiros, Robert H. and Nancy J. Blayney Professor Gerontology at Miami University
Here are some key takeaways from this month:
Gary Glazner began the Alzheimer’s Poetry Project in 2003 because he saw how classic poems are able to help individuals with dementia reengage. He uses props, touch therapy, and a call and response technique along with open-ended questions. While participating will not change the course of Alzheimer’s, he sees participants have increased laughter, verbalize more memories and improve their social interactions.
Watch a performance of the group poem ‘Ocean’ with Gary Glazner
Storytelling is how we as humans connect, but the symptoms of Alzheimer’s make it difficult to keep a story in a linear track. Anne Basting explained how this can cause individuals to doubt their capacity to understand who they are and how they communicate with others. Creative storytelling provides an outlet for Alzheimer’s patients to express themselves in whatever way they can, using a picture as a prompt and asking open-ended questions. She shows that we value the person with dementia by affirming all responses and sharing the story that was created with others.
Watch TimeSlips in action
Dr. Kate de Medeiros explained that programs such as Alzheimer’s Poetry Project and TimeSlips can increase interest, decrease boredom, stimulate thought, and perhaps decrease behavioral disturbances. There is a need to rethink research into arts programs and how the medical community determines a successful intervention. It is difficult to do a randomized control trial but there are other ways to have rigorous research that is appropriate to what is being measured.
The arts need to be viewed as something that’s worthwhile. We can start by spreading the word and educating providers and caregivers about the different kinds of programs available.
To hear the whole discussion, listen to the podcast or read the transcript!
Many thanks to The National Endowment for the Arts and its Interagency Task Force on the Arts and Human Development for partnering with USAgainstAlzheimer’s for this month’s Alzheimer’s Talks.
Five years after award-winning journalist Greg O’Brien was diagnosed with early onset Alzheimer’s – the same disease that stole his mother, grandfather, and uncle – he found that, at any given moment, he could be without 60% of his short-term memory.
In our April Alzheimer’s Talks, Greg shared with us his unique insights as both a caregiver and someone living with this disease.
Here are some highlights from the call:
1. Inside the mind of Alzheimer’s. Greg uses the term “on Pluto,” to describe his mind when experiencing symptoms of Alzheimer’s. His book, On Pluto: Inside the Mind of Alzheimer’s, is about using hope, faith, and humor to live with this disease, rather than die with it. Get your copy here.
2. Always try to keep your humor. Greg has a number of ways he copes with his symptoms, including labeling his toothpaste, emailing himself reminders and exercising his brain and body every day. Most importantly, though, he says he always remembers to laugh at himself and the demon called Alzheimer’s.
3. “Let it be blue.” People living with early onset Alzheimer’s often know when they can’t find the right words – like mistakenly calling a wall blue instead of white. When asked to provide advice for caregivers, Greg urged friends and family to let the little things go, saying, “Let it be blue.”
4. Alzheimer’s is not your grandfather’s disease. In many cases, symptoms of Alzheimer’s can start early, as they did for Greg, and take 20 years to run their full course. But too often, individuals suffer quietly, scared to talk about their symptoms for fear they’ll lose their jobs or face embarrassment. Collectively, we have to speak out to raise awareness and empower individuals living with Alzheimer’s.
5. Make caregivers part of the cure. Caregivers deal with health issues of their own, including anxiety, depression and other health problems that take a serious mental and physical toll. Part of the effort of moving forward toward a cure must include taking care of our caregivers.
We’re grateful Greg was able to join us for our April Alzheimer’s Talks, and USAgainstAlzheimer’s is honored to be teaming up with him to create a series so that we can unite and combine our activism and end this disease together, faster.