“Still Alice” by Lisa Genova: Book Review and Analysis

• Kelcie Crain

Book Review

“Still Alice” by Lisa Genova was the story of Alice Howland, a fifty year old woman. She was married to John, a researcher at Harvard University. She also had three children: Lydia, Anna, and Tom. Alice worked at Harvard University but as a psychology professor with a focus on linguistics. Alice and John spent most of their time at work and were both hard working and devoted. She expected the best from her students and herself, she even presented speeches around the world and assisted her graduate students with correcting their thesis research papers. Her life took a sudden turn though. She learned that she had early-onset Alzheimer’s disease and it isn’t long before it affected her work and she couldn’t recognize her daughter.

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At first Alice forgot a few things here and there, including how to get home after a jog. She blamed these lapses in memory on menopause until she had her period on her fiftieth birthday. Alice decided to meet with her doctor, Tamara Moyer to consult about her concerns regarding her memory problems and to confirm it was just due to menopause. Dr. Moyer confirmed she is most likely experiencing menopause but it was probably not affecting her memory problems, so she drew some blood and recommended an MRI.

After Alice went to class to teach linguistics and forgetting which lecture she is supposed to be teaching, as well as forgetting that she needed to catch a plane to go present a speech, she decided to request a referral to see a neurologist from Dr. Moyer. When Alice met with the neurologist, Dr. Davis, he ran a few memory tests on her and did a neurological exam. The next time they met to go over the results, he concluded that she showed the symptoms for early onset Alzheimer’s, a form of the disease that affected those that are under the age of sixy-five. He also notified her that she could be genetically predisposed for Alzheimer’s and her children could have it as well.

Alice told John ten days later about her visit with the neurologist and that he had diagnosed her with early onset Alzheimer’s. John immediately denied the diagnosis because he has not noticed any severe problems with her memory. However, he was often gone all day working at the lab and was not around long enough to realize just how much she was forgetting. So, they met with a genetic counselor, Stephanie Aaron, who found that Alice had PS1, one of the genetic mutations that predisposed her for Alzheimer’s. Still, John could not believe the results, asking about the false positive rates of the lab while Alice realized they have to tell the children.

When Alice and John notified the children that Alice had Alzheimer’s, Lydia mentioned that she was not entirely surprised. Lydia had noticed for about a year that Alice was having problems with her memory, John seemed surprised and felt bad for not noticing. Alice and John explained that since Alzheimer’s was genetic, they may have the mutation as well. Lydia decided not to take the test, Tom was negative for the mutation, but Anna was positive. Since Anna was trying to start a family, she decided to do in vitro fertilization. Her doctor tested her embryos for the mutation and only implanted the one’s that did not have the mutation.

Alice visited a nursing home for Alzheimer patients that she was considering for herself when she for when she could no longer be independent. However, she realized how bad the disorder could get and how their families rarely visited them there. So, instead, she created a folder on her computer labeled “Butterfly” and set up a reminder on her blackberry. When the reminder went off, she was supposed to answer five questions: where she lives, where her office is, what month it is, Anna’s birthday, and how many children she has. The reminder also noted that if she was unable to remember just one question, she was supposed to go into the folder labeled “Butterfly.” This folder provided directions to sleeping pills she had hidden in a drawer that she was supposed to overdose on.

As time goes by, Alice gives less detailed answers when answering the five questions until she suddenly stopped getting reminders. It turned out that she accidently left her blackberry in the freezer, losing the reminder to test her memory and forgetting that there was a reminder. She also got called into her bosses, Eric’s, office. He showed her the evaluations she had received from last semester and she realized that Alzheimer’s has begun to affect her teaching. She confessed to Eric that she had Alzheimer’s and she immediately stoped teaching and only advised her graduate student Dan and attended meetings.

After her colleagues found out that Alice had Alzheimer’s, they all began to avoid her as if it was contagious. So, she spent more time at home. However, since John was always gone she began to realize how alone she felt, so she tried to look for support groups. She ended up making her own support group with Mary, Dan, and Cathy who also had Alzheimer’s. They all shared their experiences and related to one another, they also seemed grateful that Alice formed the group since there were no other support groups for those with Alzheimer’s, just their caregivers.

Alice did a follow up with Dr. Davis and decided to join a drug trial for Amylix that was supposed to decrease the progression of Alzheimer’s. At the end of the book, John was reading a newspaper and began to cry at a coffee shop. The newspaper disclosed the results of the drug trial for Amylix. He learned that the drug did not show signs of decreasing the progression of Alzheimer’s. John realized that Alice didn’t have a chance at trying to get better and there was no hope; there was no cure.

John announced to the family that he was offered a job in New York and he was considering accepting the job. All of their kids disagreed with the idea, declaring their home was in Massachusetts and moving could only cause Alice more confusion. Anna and Tom are also closer to them when they were in Massachusetts and could help out with caring for Alice. She would also not be close to her support group if they moved. Although John realized all of this, he couldn’t stand watching as Alice got worse, watching as her memories began to fade and she could no longer recognize her children or even herself in the mirror. Alice reached the point that she required a caregiver, Carole. However, her children still cared for her when they had the time while John continued working, avoiding the situation. Alice hadn’t gotten better, her cognitive abilities continued to decline but she could still communicate with her family and she spent the time she has left enjoying their company.

Analysis

Alzheimer’s can often be overlooked. Not only by the family and the individual but also by doctors. Many of the early signs of Alzheimer’s seem like normal patterns for aging. Common early symptoms for those with Alzheimer’s include difficulty concentrating, absentmindedness, disorientation, trouble with language or finding the correct word, and agitation but can later include trouble recognizing family and friends, apathy, as well as needing assistance getting dressed, eating, and bathing. Alice displayed many of these symptoms. She showed brain tissue deterioration first through absentmindedness such as when she forgot her blackberry at a restaurant, when it was something she seemed to rely heavily on and trouble remembering new information. Like most with this disorder, she had to rely on her blackberry and post-it notes to remember what to do that day, and even then she would sometimes forget about something she was supposed to do. Later she experienced disorientation, hallucinations, inability to recognize herself in the mirror, depression, and trouble dressing herself. She was disoriented one day during a run around Harvard and she found herself not recognizing she was in Harvard Square. Later, she did not recognize herself in the mirror and decided to paint over the mirrors because she thought they were defective. However, Alice also met the DSM5 criteria for mild neurocognitive disorder. The criteria that she met included patients concern about cognitive decline, placement in the sixteenth percentile for recent memory, decline that doesn’t interfere with performing everyday activities, and doesn’t occur due to delirium or other psychological disorder.

Early-onset Alzheimers Disease (EOAD) is when an individual shows Alzheimer symptoms before the age of sixty-five and late-onset Alzhemiers Disease (LOAD) is when they display symptoms after the age of sixty-five. Although the two disorders are very common, they vary in areas of affected cognitive abilities and the frequency of certain symptoms more commonly. Possible symptoms for EOAD and LOAD include hallucinations, dysphoria, delusions, disinhibition, euphoria, and anxiety. However, those with EOAD tend to experience dysphasia and apathy more often and rarely experience disinhibition, delusions, agitation, and hallucinations (Toyota et al., 2007). However, Alice experienced a delusion when she thought a black rug was a hole in the floor and that her mail was just floating on top of the hole. Those with EOAD also tend to present more impairment in visuospacing as well as impairment in language, complex motor activities, and executive functioning (Mendez, Joshi, & Shapira, 2012). Impairment in visuospacing includes trouble judging distance, reading, or recognizing themselves in the mirror; with language they may have trouble following a conversation, finding the correct word, or call things the incorrect name; and executive functioning causes difficulty with planning, remembering details, managing time, organizing, or focusing; complex motor activities can make it hard to draw or write. Alice showed signs of language impairment when she could not find the word she wanted to use during a speech as well as visuospatial impairment when she had difficulty getting dressed.

When those with Alzheimer’s disease notice early symptoms of the disease and seek confirmation that their cognitive decline is only due to aging, they often visit their primary care provider first. Alzheimer’s, a form of dementia, is not always easy to diagnose because many other disorders are similar to dementia. One way to rule out other disorders is by performing an MRI (Leifer, 2009) which Alice’s doctor, Dr. Moyer, had recommended. However, when Alice returned to review the results, Dr. Moyer had informed Alice that everything came back clean and was going to have her come back in three months. When patients are displaying memory problems it is recommended that doctors screen for Alzheimer’s by performing neuropsychiatric and lab tests as well as learn about the client’s complete history (Leifer, 2009). Dr. Davis, the neurologist, performed multiple neuropsychological tests and ran a blood test. Doctors should especially perform lab tests, conditions that can cause symptoms similar to dementia include HIV, vitamin B12 deficiency, and hypothyroidism (Leifer, 2009) which Dr. Davis had specifically looked for. Since Alzheimer’s is so difficult to recognize, it is important to run the correct tests and to perform cognitive tests so if the patient does have Alzheimer’s, they can seek treatment as soon as possible to slow down the progression of the disease.

Cognitive abilities can be measured using neuropsychological tests. Common tests used include the Boston Naming Test where the patient is asked to name the item in a picture, digit span of the Wechsler Adult IT Scale that requires patients to repeat a series of numbers back to the observes in the exact or reverse order, reorganizing aloud a list of 10 common nouns for the Consortium to Establish a Registry for Alzheimer’s Disease (CERAD), and read or name as many words as they can for the Stroop Task (Kaiser et al, 2012). When Dr. Davis tested Alice’s cognitive abilities, some of the tests she recognized that are commonly used included the Stroop Task and Boston Naming Task. There are many tests that can be used and are used to measure different cognitive tasks. For example, the Boston Naming Test measures language while the Stroop Task tests executive functioning (Kaiser et al, 2012).

Although Alzheimer’s is not curable, it is believed medication, exercise, healthy diet, and exercising the mind can help reduce the progression of the disease. Dr. Davis had first prescribed Alice Aricept and Namenda. She also took aspirin, antioxidants, vitamins, two neurotransmitter drugs, a statin, and Amylix-a drug still in the third testing phase. Before she was diagnosed, she would often go jogging. The Amylix she was prescribed is Donepezil, a cholinesterase inhibitor that is one of three drugs that are recommended for treating those with mild-to-moderate stages of Alzheimer’s (Leifer, 2009). Cholinesterase inhibitors (ChEIs) have been shown to be able to treat those with mild-to-moderate Alzheimer’s and are more effective than placebos at slowing down the progression of Alzheimer’s (Leifer, 2009).

Reflection

This author viewed “Still Alice” as thoughtful, informative, and important. By writing about disorders in a way that is not only correct and informative but also relatable, it can educate the reader about the disorder. Making the book into a movie, it can broaden the audience and can educate more people about the disorder. This author hopes others will follow, writing more about disorders and portraying it accurately so readers can obtain a better understanding on how the disorder works. Since many cultures do not discuss illnesses or disorders, it is essential that there is other ways for the public to learn about the disorder, especially in more than just an educational setting (schools or textbooks).

This author enjoyed how the book chose to start out with Alice having some minor memory lapses and then slowly watching as the disorder progresses. This author thinks by writing the book this way, it allows readers to see just how Alzheimer’s progresses and just how small the first symptoms of the disorder can be. This also allows the readers to watch just how Alzheimer’s affects the memory, making the diagnosed forget more recent events and later finding themselves having trouble with recognizing their own children and remembering their names. However, the author should have included information regarding environmental affects when Alice had gone to talk to the genetic counselor. The genetic counselor should have informed Alice that although the disorder is genetic it does not mean that her children who have the mutation for Alzheimer’s will be affected by the disorder, it just means they are predisposed for the disorder.

The book made this author realize just how much a disorder can affect someone. Alice found all her coworkers, her friends, avoiding her and not understanding how to deal with her. It seems like people believe disorders are a virus, something they can get just by being around those with the disorder. This author has realized the importance of trying to educate our society so they can respect those who do have a disorder, know how to communicate with them in a non-awkward manner, and realize they too deserve respect, casual conversation, and to be treated like any other human being.

In regards to Alzheimer’s, this author has realized that, like with most other disorders, it seems to be on a spectrum. Although two people may have Alzheimer’s one may be early onset and the other late onset. They may even decline at different rates or one may lose the ability to communicate while the other is unable to control their body. Although two people may have Alzheimer’s they are very different, the disease effects everyone differently.

References

Genova, L. (2007). Still Alice. New York: Simon & Schuster.

Kaiser, N. C., Melrose, R. J., Liu, C., Sultzer, D. L., Jimenez, E., Su, M., Monserratt, L., &

Mendez, M. F. (2012). Neuropsychological and neuroimaging markers in Early versus

Late-Onset Alzheimer’s Disease. American Journal of Alzheimer’s Disease and Other Dimensias, 27 (7), 520-529. doi: 10.1177/1533317512459798

Leifer, B. P. (2009). Alzheimer’s disease: Seeing the signs early. Journal Of The American Academy Of Nurse Practitioners, 21(11), 588-595. doi:10.1111/j.1745-7599.2009.00436.x

Mendez, M. F., Lee, A. S., Joshi, A., & Shapira, J. S. (2012). Nonamnestic presentations of early-onset Alzheimer’s disease. American Journal Of Alzheimer’s Disease And Other Dementias, 27(6), 413-420. doi:10.1177/1533317512454711

Toyota, Y., Ikeda, M., Shinagawa, S., Matsumoto, T., Matsumoto, N., Hokoishi, K., & … Tanabe, H. (2007). Comparison of behavioral and psychological symptoms in early-onset and late-onset Alzheimer’s disease. International Journal Of Geriatric Psychiatry, 22(9), 896-901. doi:10.1002/gps.1760