A free teleconference series offered by UsAgainstAlzheimer's Network covering a wide range of topics with leaders in the Alzheimer's community.
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.
What if a spoonful of coconut oil each day were all it took to reverse or slow down the symptoms of Alzheimer’s?
When Dr. Mary Newport’s husband was diagnosed with early onset Alzheimer’s disease, she – like so many of us – started searching for a treatment. And she believes she found one in coconut oil. Dr. Newport believes coconut oil gave her a few extra good years with her husband. Now, the Byrd Alzheimer’s Institute at the University of South Florida (USF) is running the first-ever randomized clinical trial to investigate whether anecdotal reports of the effectiveness of coconut oil in treating Alzheimer's can be verified.
Here are some highlights from the call:
- Shortly after beginning regular treatments with coconut oil, Dr. Newport’s husband regained energy, his tremors virtually disappeared, and he got his sense of humor back.
- Anecdotal stories suggest that coconut oil could be effective against both neurological and physical symptoms of Alzheimer’s disease.
- It's thought by some that your liver converts part of coconut oil to ketones, which serve as an alternative fuel to the brain.
- Unlike many clinical trials, USF’s investigation of coconut oil involves two three-month treatment periods, during which all participants will receive the active treatment for one of the periods and a placebo during the other.
- You can get involved. USF is looking for participants between the ages of 60-85 who have a documented diagnosis of mild-to-moderate Alzheimer’s disease. Click here to find out more about how you or someone you know can enroll in the USF trial.
We’re grateful Dr. Newport was able to share her personal experience with using coconut oil to slow the symptoms of early onset Alzheimer’s and are encouraged by USF’s clinical trial to investigate the effectiveness of coconut oil to treat Alzheimer’s.
USF expects to have results from the trial in about 12-18 months. In the meantime, if you missed the talk with Dr. Mary Newport and Jill Smith – or if you’d like to hear it again – you can listen to audio playback or read the transcript of our conversation.
You can catch up on previous talks, and make sure you never miss a new one, by subscribing to our podcast. Click here to subscribe to the Alzheimer’s Talks podcast!
There are a number of factors that make women at higher risk for Alzheimer’s, but there are also some critical strategies to delay or prevent the onset of this disease.
On February’s Alzheimer’s Talks, we were joined by Dr. Roberta Diaz Brinton, R. Pete Vanderveen Chair in Therapeutic Discovery and Development and Professor of Pharmacology and Pharmaceutical Sciences, Biomedical Engineering and Neurology at the University of Southern California, who has led groundbreaking research investigating the hormones and neurosteroids that defend and repair the brain’s cells. She was joined on the call by Dr. Howard Fillit, Founding Executive Director and Chief Science Officer of the Alzheimer’s Drug Discovery Foundation, which has funded some of Dr. Brinton’s research.
Here are some key highlights from the call:
- Age is still the number one risk. Age remains the greatest risk factor for Alzheimer’s disease, helping explain why this disease disproportionately affects women, who live on average 4-5 years longer than men. But age alone does not explain the increased risk for women.
- Sooner rather than later. Identifying early symptoms and intervening at the earliest stage of Alzheimer’s development is critical to possibly delaying further advancement of the disease.
- Diet and exercise. Just like our bodies, our brains need the right food and exercise to thrive. Increasing movement throughout the day and reducing sugar consumption are two keys to maintaining good brain health. The ADDF’s website, Cognitive Vitality, shares evaluations of hundreds of prevention strategies.
- One size does not fit all. There are many different ways to develop Alzheimer’s and therefore no singular therapeutic cure will work for all. Instead, there’s exciting potential in many therapeutic drugs out there in the pipeline, ready to be tested.
- Clinical trials are recruiting. She discovered that the hormone allopregnanolone (Allo) generates new neurons in the brain and those new nerve cells can restore memory function and reduce the pathology of Alzheimer’s in the brain. This first ever regenerative therapeutic is currently being tested in clinical trials. For more information about enrolling in the clinical trial, click here.
- Researchers are ready for your help. Following decades of research and drug development, many therapeutic drugs are now being tested in clinical trial. The single best thing you can do is give researchers the opportunity to learn more from you. Participate in a clinical trial, or ask your physician if he or she is making your information available to Alzheimer’s researchers.
We’re grateful Dr. Brinton was able to share some of her findings on strategies for prevention and her optimism regarding a possible treatment in the pipeline. If you missed the talk with Dr. Brinton – or if you’d like to hear it again – you can listen to an audio playback or read the transcript of our conversation.
We hope you’ll join us next month when we speak about the research on coconut oil, including a clinical trial, which is enrolling now. Don’t forget to register here!
Concussions and traumatic brain injury can actually be a risk factor for degenerative diseases, including Alzheimer’s.
Dr. Bruce L. Miller, Director of the Memory and Aging Center at the University of California San Francisco, works with the NFL to help with the brain health of players. We’re not all professional football players, but we can all learn something from Dr. Miller’s research.
- Brain trauma affects many people. 1.6 – 3.8 million people in the U.S. have sports-related concussions every year. It can also result from things like car accidents or falls. Particularly worrisome are chronic repetitive injuries.
- Traumatic brain injuries increase risk. They can cause the release of the A beta 42 and tau proteins in the brain. You are about 1.5 times more likely to develop Alzheimer’s, 1.5 times more likely to be bipolar and twice as likely to experience ongoing depression.
- Delayed onset. Symptoms of concussions and dementia can appear several decades following a traumatic brain injury.
- Get a good night’s rest. Bad sleep patterns are a risk factor for later cognitive deterioration. If you aggressively treat patients with sleep apnea, their cognitive symptoms could disappear altogether.
- Can we develop anti-tau therapies? Dr. Miller helped start the Tau Consortium, bringing together some of the world’s best scientists and researchers to find tau antibodies with a sense of urgency along with looking for biomarkers to help decrease the number of participants needed for clinical trials.
Dr. Miller’s work with the NFL puts our fight to cure Alzheimer’s in the limelight – and his research with the Tau Consortium opens up a world of possibilities for future Alzheimer’s risk prevention and treatment.
We’re grateful he was able to share his findings with us. If you missed the talk with Dr. Miller – or if you’d like to hear it again – you can listen to an audio playback or read the transcript of our conversation.