The Memory Thief: Lecture Summary by Mark Shannon

Dr. Lisa Genova came to Heinz Hall prepared to educate those assembled about Alzheimer’s disease.  She is a Harvard-educated neuroscientist and the author of the book “Still Alice” which became a movie of the same name featuring Julianne Moore in an Oscar-winning role.

She began by saying that she is a neuroscientist and a novelist—two careers that don’t often go together.  After extensively studying the brain and working as a scientist researching various aspects of its structure, she realized that she didn’t have a way to accurately describe the process and the experience of having a disease such as Alzheimer’s.  She wanted a way to show people what it meant to be a patient under those conditions.

She was drawn to this specific illness because her grandmother suffered from it.  She was close to her Nana throughout her childhood and it saddened her to see the woman living with Alzheimer’s.  Her aunts dealt with the disease in their own way. One woman took charge of her mother and another woman expressed gratitude that she did because she could not have borne that responsibility.

Dr. Genova watched her grandmother’s condition worsen and worked to better understand the disease.

Although it was a cruel ordeal to witness, she recalls that there were flashes of humor to be enjoyed as well.  On one occasion her aunts took her grandmother on one last trip to Italy. On the plane waiting to depart, her Nana looked out the window and noticed the engine of the plane under the wing.  

“What’s that little car down there?” she asked her daughters.

The woman who took care of her explained patiently that she was looking at the plane’s engine.

Occasionally her grandmother repeated the question and got the same answer.

On their arrival in Italy, her grandmother explained in amazement, “That little car kept up with us the entire trip!”

Dr. Genova explained the devastating impact of Alzheimer’s.  By the time a group of people reach the age of 85 one out of every two people will be afflicted with the disease.

When she noted that many people in the audience were probably thinking “OK, it’ll probably be the other person and I’ll be all right”, she declared that although that might well be the case that makes the first person the caregiver.

Then she showed a brief film about what it means to care for another person with Alzheimer’s.  The film showed a son taking care of his aged father, bathing, dressing, and shaving him. The film noted that the son was grateful to have the chance to spend the time with his dad and recognized that he had been taken care of by his dad growing up and it was the right thing to do the same for his dad.

Genova said this is a healthy way to look at being a caregiver.  Many people resent the time-consuming, distasteful, work that must be done but it can be an opportunity to draw near to a loved one and spend time together at the end of one’s life.

She noted that she often hears people lament that it’s no use going to visit someone with the disease because there comes a point when the person won’t recognize them anymore, so what’s the use?

To that situation, Genova responds that the person will not recognize the person that visits them, but that patient will experience the emotion of the visit.  There is a way to visit a person with that disease and leave a positive impact on the patient.

She explained that at one point in her writing career she took an acting class that specialized in improvisation.  In this discipline the idea is to say “Yes, and then what” to any scenario thrown one’s way. If someone says “It’s a beautiful day,” one response would be “Yes it is, let’s go for a walk.”  Then the other person builds on that response.

If you visit an Alzheimer’s patient and he tells you:  “My mother is going to visit me today,” you can respond rationally by saying that the patient’s mother died thirty years ago and she’s not coming today.  The patient hears those words and processes the statement as new information. Thus the patient learns as if for the first time that his mother died.

A more positive and beneficial response would be something like:  “That’s great that she’s coming. Let’s have a cup of tea while we wait.”  The patient won’t be alarmed by harmful information and the emotional security of a warm cup of tea with a nice friend will stay with them long after the visit is over.

Many people become distressed if they momentarily misplace their keys, thinking this might be a sign of early onset Alzheimer’s.  But she assured us that that kind of momentary memory lapse is completely normal. As is forgetting why you walked into a specific room in your house.  Even 25-year olds have this kind of lapse frequently in the course of a day. But nobody worries about it because they are still 25. But everyone has the belief that life stretches indefinitely down through the ages and that there will be time to deal with that problem at a later date.   People in America have a very difficult time thinking about their own death and making preparations for that event. There are only so many breaths to take in each life and death will come for us all.

Although it is normal to misplace keys and find them after a short search, it becomes more disturbing, and more indicative that Alzheimer’s may be present, if you misplace your keys and someone finds them in the freezer.  It is this kind of behavior that must be addressed medically.

She described the progress the disease takes in the life of a patient.

Alzheimer’s attack the hippocampus first.  This is the part of the brain that processes new memories.  Then the disease spreads into different areas of the brain, causing more severe damage to the person’s life and livelihood.  Eventually balance is affected and this is followed by the loss of motor skills. The last stage occurs when the disease attacks the involuntary functions of the body, such as respiration.

There is no cure for Alzheimer’s but Dr. Genova thinks that one will be discovered in the next 10 or 15 years.

But until that cure is discovered, and before enough plaque builds up in a person’s brain to create a tipping point where the disease spreads unchecked like wildfire, there are some things that a person can do to lessen the possibility of acquiring the disease.

These preventive measures include:

Following the Mediterranean Diet

Getting the right amount of sleep

Exercising on a regular basis

Learning a new skill

These four things can contribute to staving off Alzheimer’s.  

She hastened to add that doing crossword puzzles will in no way guarantee that you won’t get the disease.  Doing crossword puzzles involves simply plugging in information that is already stored in the brain. A more productive pursuit is to learn a language or take up a new hobby that is outside your comfort zone.  Then nerve cells are formed that create new pathways in the brain and this seems to be a buffer against the disease.

She also dispelled the myth that being in contact with aluminum hastens Alzheimer’s.  She said that rumor came out in the 1970’s because some scientist supposedly saw traces of aluminum in the brain of a cadaver.  Those results have not been scientifically replicated and so there is no basis for this belief according to medical professionals.  

It was at that point that Larry Richert, the moderator for the evening, joked that that was good to hear in the town that hosts the worldwide headquarters of Alcoa.

Dr. Genova said that if all she had ever done in the study of Alzheimer’s was to pursue a Harvard education and conduct experiments in a lab, then Julianne Moore would never have won an Academy Award for her role in “Still Alice”.

She realized years ago that if she wanted to communicate the emotional impact of a disease such as Alzheimer’s she would have to do it through the venue of storytelling.  When readers become involved in a story and the lives of the fictional characters contained there, the brain makes the same connections as though a real person was telling them actual experiences in real life.

So in the early 2000’s she began interviewing some Alzheimer’s patients in a deep and meaningful way.  By spending time with these people she was able to understand their experiences and over the course of two years, she turned their stories into “Still Alice”.

But the book was not an instant success.  Many publishers who read the book thought it was too depressing a subject.  She sold copies of the book out of the trunk of her car. Finally she landed a publisher and Hollywood got involved.

Then the impact of the disease became a worldwide phenomenon.  Someone compared the story and its influence to the movie “Philadelphia” and how that film spread the word about AIDS.

She realized that she had an opportunity to tell people about debilitating diseases and brain-related illnesses in a way that was somewhat removed from actually having a disease.  Since “Still Alice” she has written a book about Lou Gehrig’s disease and one about a child on the autism spectrum. She plans to keep making people aware of the facts of traumatic illnesses through the lens of fiction.

 

Questions from the Audience

When people receive a diagnosis of dementia they are somewhat relieved that they don’t have Alzheimer’s.  But don’t they realize that dementia is often a precursor to the disease?

Doctors do a grave disservice to patients when they diagnose dementia without giving more details.  They need to spend the time to discuss the possible ramifications of dementia in more detail.

So a person receives a diagnosis of Alzheimer’s.  The tests have come back positive. What’s the next step for the patient?

Each case is unique and different.  The best thing to do is to find a network or support group for people and families going through this crisis.  Talking to people who are farther along in the journey is a tremendous help.

Is there a blood test that can determine susceptibility for Alzheimer’s?

Researchers are scrambling to find just such a blood test and the big pharma companies would love to see them succeed.  But as yet there is no such test that can be taken—although there are some promising leads being developed.

Do you regret giving up the research aspect of your work to become a novelist?

No.  It takes about two years to research and write a novel and it takes about the same time to develop and test an experiment and find out the results.  She much prefers writing to working with rats in a lab.

What are you working on now?

She plans to keep writing and has ideas for books about addiction and mental illness.  She also spoke about a disease that affects the brain in a very peculiar way. Patients experience the world using only the right side of their brain.  A man shaves the right side of his face and doesn’t regard the left side at all. The mirror reveals the whole face but the patient sees only the right side.  One man said he never knows if he is going in the right rest room in public because the illness cuts off the “W O” in “Women” and he only sees “men”.

Who did you wear to the Oscars?

She didn’t reveal her connection in my hearing but she did say that the award season was a whirlwind.  When “Still Alice” premiered in Toronto, it was a foregone conclusion that Julianne Moore would be a lock for best actress.  So the Hollywood press people and the movie-making machinists insisted that as the author of the novel, she must attend some of the functions.  She was highly skeptical and told them that she spends most of her days in sweat pants and a tee shirt in the suburbs of Ohio. But they insisted and she was whisked into the upper echelons of the circuit.  One party was hosted by the producers of the movie in Beverly Hills and they urgently stressed to her that she wasn’t to make a big fuss over any famous people who might be in attendance.

She had just seen the movie featuring Eddie Redmayne in the role of Stephen Hawking and she was very impressed by his performance.  So she was astonished when she walked into the ballroom and discovered that Eddie Redmayne was the first person she encountered.

She gushed to him about how much she enjoyed his movie and he thanked her and said “And you are…?”

When she told him she was the author of Still Alice he was extremely impressed and did a bit of gushing himself.