Lisa Genova is a neuroscientist who writes novels! She recently gave a talk at UCSB Arts And Lectures entitled “Still Alice: Understanding Alzheimers”
Here are courtesy photos kindly provided by Dr. Genova’s agent.
As a neuroscientist, Dr Genova knows that our brains are not very good at absorbing factual information directly. We do much better at understanding stories. As a result, she had to become a story teller to convey what she has learned about Alzheimer’s Disease.
In particular, empathy is the best way to learn. Story telling was a whole new way of thinking for her and it was a bit scary.
Genova grew up in a big Italian family. Her beloved grandmother was diagnosed with Alzheimer’s.
The statistics are staggering. About 5.7 million with Alzheimer’s in the US now. A new one is diagnosed every minute. Half of all people aged 85 and over have Alzheimer’s.
If you don’t have it at some point, it is likely you will become a caregiver for someone who has it.
Alzheimer’s often starts in the hippocampus which is an important brain center for memory. But then it spreads. The language centers are often affected after memory.
We are all familiar with the “tip of the tongue” phenomenon of knowing a word but not being able to access it. This is normal. But in Alzheimer’s it shows up for every day words rather than for less-accessed words. Words like door, tree or pencil.
Alzheimer’s can spread to the amygdala and limbic system which are the centers of emotion. The result can be grief, rage or even lust.
In the case of Genova’s grandmother, the grandmother made a point of touching every attractive man in the supermarket!
Episodic memory is often what we mean when we say “memory”. It is the memory of specific events or episodes. In contrast to “how-to” memory, for example. Alzheimer’s attacks episodic memory. Her grandmother started to forget family members one by one.
It can spread to the cerebellum which controls bodily movement. The disease typically takes 8-10 years to end in death.
She showed images of brain loss that are dramatic. The shrinkage and rot are obvious.
Amyloid beta plaques accumulate for about fifteen years. They collect at the synapses. If you are over 40 you probably have these.
Memory problems are more about paying attention in the first place than about memory in normal cases. Were you actually noticing where you left your keys or your phone in the first place?
Alzheimer’s is different. You may discover you left your keys or your phone in the microwave oven.
Genova realized she did not know how to be with her grandmother. Mirrors confused her grandmother. Who was that old woman in the mirror? Her memories were all before age 20.
She forgot all of her nine children. Starting with forgetting the daughters!
Her aunts took her grandmother to Italy for a final farewell. They were sitting on the plane at Boston Logan Airport. The jet engine puzzled her. She thought it looked like a car. She was surprised that car followed them all the way to Rome!
Genova wanted to emphasize the difference between sympathy and empathy.
She asked for a show of hands how many have done the ALS Ice Bucket Challenge. Quite a few. She said that is a show of sympathy. You may feel pity. But then you can move on. Empathy is about connection. For example, what does it feel like to have Alzheimer’s?
There are 40 million unpaid caregivers taking care of adults in the US. 75% are female. This amounts to about 18 billion hours per year of unpaid work.
Genova showed a video of a son caring for his father who was a retired tugboat captain. The video was created by Gillette and shows the son shaving the father.
The neuroscience of empathy is improving. It is believed now to be related to mirror neurons. Mirror neurons activate in you when you see someone else take an action or feel joy or pain.
We are wired for empathy despite societal pressures to suppress it. Stories can activate empathy.
That moved Genova to write the book “Still Alice”. Which was then made into an Oscar-winning Hollywood movie. But it did not start out as a successful idea.
She met with 27 early onset/early stage Alzheimer’s people. She had deep conversations with them. Their fears and regrets. They worry about their legacy and will they lose their driver’s license. Will they still matter?
Genova said we are turning out backs on 50 million people worldwide. We treat Alzheimer’s patients as we used to treat cancer patients. It was just not spoken about.
It took her a year and a half to write “Still Alice”. She contacted 100 agents. Every one turned it down. They said it was too scary. Too depressing.
Genova decided to self publish it. She sold it out of the back of her car. She went to book clubs to give out free copies in exchange for writing a review.
When Simon and Schuster saw her hard work and success they decided to pick it up for publication.
Alzheimer’s is about “losing yesterdays”. You can only guess what happened in your past as if you were trying to make a prediction about an unknown future.
Worse, you can’t choose which memories are lost. Can’t I keep my happy memories of my husband in exchange for forgetting the names of state capitals? Unfortunately, no.
It seems that one’s “soul” stays. I am not what I say or do. There is still a “me” that remains. One lives in the moment.
Neurologist and author Oliver Sacks said that he learned from those with mental health disease.
Genova wanted to learn acting. It was about as far outside her comfort zone as she could imagine. The start of learning was improvisation.
She learned that the core of improvisation is “Yes, and”. Someone starts an improvisation scene and hands it to you to continue. You have to accept the gift. You can’t negate the reality that you have been offered.
Let’s go to Bali on a magic carpet. OK. Let’s go. Let’s see what happens next.
This works for acting. And it works for relating to someone with Alzheimer’s. She finds her grandmother waiting for her dead mother to arrive. OK. Let’s have tea while we wait. An example of “Yes, and.”
You may think there is no point to visiting your Alzheimer’s father. After all, he never remembers your last visit. He won’t remember this one either. But there is an emotional memory that does remain. This connection and emotional memory stays even in late stage Alzheimer’s. They will remember how you made them feel.
In 2002 her grandmother died. Two years before the book was done.
In 10-15 years she expects preventative medicine. Think how far technology has advanced in the past 10-15 years. There were no smart phones just that far back. Research tools get better each year.
Amyloid plaque prevention drugs are in trials. There is a rare gene that produces Alzheimer’s 100% of the time. This allows for research on this population.
Most Alzheimer’s is a combination of genes and life behavior. APOE4 is a gene that increases the chance of Alzheimer’s. But with proper lifestyle it may never develop.
Here are key risk factors for Alzheimer’s:
Cholesterol, Heart Health, Diabetes, Blood Pressure, Smoking
Here are key help factors to reduce the risk of Alzheimer’s:
- A Mediterranean diet reduces risk by 1/3
- Sleep promotes glial cleaning
- There can be a vicious cycle of sleep deprivation. It can lead to difficulty sleeping and more deprivation. The solution is good “sleep hygiene”.
- Increasing cognitive reserve and neuroplasticity. The more routes you have in your brain, the more alternatives there are when a route is lost.
Solving crossword puzzles unfortunately does not seem to increase that cognitive reserve. What does help? Travel to new places. Learning a new musical instrument. Learning a new language.
Genova took questions that were prepared somehow in advance.
Someone wanted to know if it was true that Alzheimer’s can only be diagnosed by autopsy. She said that is not quite true. Dementia is a symptom that can have other causes: Depression, stroke, vitamin deficiency for example. Alzheimer’s is diagnosed by elimination of other causes.
One test is to count backwards by sevens. Another is to see if the subject can remember an address five minutes later.
There is a Pittsburgh Compound B Amyloid imaging technique using a PET scan. It costs $2,000 and is not covered by insurance.
It is also possible to do a Cerebral Spinal Fluid (CSF) tap which is invasive and expensive. In the future it would be ideal if a blood test were possible.
What about the role of the media? In general, not very helpful. Bad ideas spread quickly while correct information spreads more slowly.
She was on Dr Oz and felt he was an example of a bad influence. He talked of aluminum as a cause of Alzheimer’s which has never been replicated.
A recent claim was that gum disease contributes to Alzheimer’s. I had seen this in a reputable place just before her talk! It turns out it was funded by Pharma and was not true.
She does say that Maria Shriver does good work in the media.
What about 23 and me genetic testing? It can be good for some diseases. Huntington’s is 100% genetic, for example.
Genova says she lives as if she is at risk. The lifestyle changes to reduce Alzheimer’s risk are good for everyone anyway! It is good to eat a Mediterranean diet, to exercise and to get adequate sleep for a variety of reasons!
So far the Alzheimer’s drugs have failed. She likens it to putting out a match after it has started a fire. The drugs will have to be given before the symptoms appear. Once the symptoms appear the damage will continue on its own.
Some have asked Genova why she made a film about people with early onset Alzheimer’s given that they are a minority of Alzheimer’s victims. She explained that there is an attitude that Alzheimer’s is a disease of people who are already old and dying, so who cares about them.
She wanted to show people who were young and active who had a lot to lose. She hoped her book and film made a difference in showing people who we could empathize with. People who are aged 45-55 like those in “Still Alice” are people who others depend on. At work and at home.
Unfortunately, one of the first things to be lost with Alzheimer’s is the awareness of something being lost. This is frustrating for those who have to be caregivers as well as difficult for the person with Alzheimer’s.
One benefit of early diagnosis is to allow the person to make the best use of the limited time available.
What have we learned in recent research? Amyloid beta is not just a toxic mess in the brain. It is there for a purpose. It seems to be part of the immune system response to microbes and viruses that get into the brain.
Amyloid beta is known to attack the herpes virus. In its normal operation, it serves that purpose and is cleared from the brain with adequate sleep.
There is a blood/brain barrier that ordinarily keeps microbes and viruses out of the brain. But that barrier leaks with age. Neuro-inflammation is one area of research that is needed.
She was asked about the details of how the film got made from the book. At first she was offered the chance to have it made as a TV movie on Hallmark or Lifetime. She turned that down. She wanted it on the big screen as a “real” movie.
A pair from London who were complete unknowns offered to make it into a real movie. She Googled them and found many hits for gay porn. It seemed like a bad offer! But then she was assured that many good film makers make porn to survive.
She took the leap of trust and sold them the film rights. They found writers. They made the movie and it won an Oscar!
The experience took her into a whole new world of red carpets. She was warned to stay cool. To avoid taking selfies with movie stars.
She met actor Eddie Redmayne and forgot the rules and began to gush over him. But it turned out he was an even bigger fan of Genova!
For me it is frustrating that we face so many policy challenges in the world that require an educated public. I give credit to Genova to recognize as a neuroscientist that people are not going to change fast enough. She met people where they are by giving them the stories they need to support good policies.
Genova also wanted people to know about https://alz.org/ as a resource for those facing the disease and for those who need the resources to help those with Alzheimer’s.