A review of Still Alice by Lisa Genova

Alzheimer's is a terrible disease. It robs people of their sense of self. It is insidious, and can tear families apart.

Still Alice examines the disease intimately, but from an unusual perspective: from the person suffering the disease. This is obviously a difficult thing to do, since the person suffering from Alzheimer's is unaware of all that is happening to them.

So Lisa Genova has been very clever in depicting the degeneration of Alice. Through descriptions of the response of others, verbatim dialogue including repetition of stories/questions, through reporting her lack of recognition of her own family with enough clues for the reader to work out who the person is, through emails and notes, and test results… there is a vivid picture of a brilliant mind which is beginning to unravel.
Genova has put together a picture so accurate, it has been endorsed by the Alzheimer's Association and received praise from sufferers, caregivers and health professionals. One insight into how she could write so knowingly, and with such detail, is that she has a doctorate in neuroscience from Harvard; and that she was inspired by the sad reality of watching her 85-year-old Grandmother suffer with the disease.

Genova writes: "As her granddaughter, I was heartbroken. But as a neuroscientist, I was fascinated. I read a lot in the scientific literature about what was going on inside her head at the molecular level, and I read a lot of nonfiction written by clinicians and caregivers. But I couldn’t find a satisfying answer to the question, "What does it feel like to have this?'"

So she decided to find out what it felt like through the eyes of the main character, Alice, who is modelled both on Genova and her grandmother. She is a psychology professor at Harvard who suddenly begins noticing things going wrong: she is forgetting things, forgetting words, then getting lost in a place that is familiar. At 49, she does not even suspect that she might have Alzheimer's.

After some confusion, she is correctly diagnosed with aggressive early-onset Alzheimer's, and begins having to make a series of terrible decisions: when does she tell her husband, when does she tell her children (knowing that they may have already inherited the disease), when does she tell her employer, what experimental drugs should she consider going on, at what point should she intervene in her loss of self by ending her own life?

This is a difficult book to read. Genova has managed to generate amazing empathy for Alice, by taking us so deeply into her experience. Throughout, you share her hope for some form of miracle. Throughout, I was hoping that she would not end her own life, but understanding her fear and sense of hopelessness and desire not to burden her family.

The exploration of suicide is sensitively done. Genova explains that all the people she met in research, and after publishing, who have early onset Alzheimer's had considered suicide, so she knew that it would have to be explored in the book. However, she comments that part of the journey of this disease is accepting a movement from living with your head, to living with your heart; and accepting that person.

In a wonderful speech at a conference toward the end of the book Alice says: I am a wife, mother, and friend, and soon to be grandmother. I still feel, understand, and am worthy of love and joy in those relationships. I am still an active participant in society. My brain n longer works well, but I use my ears for unconditional listening, my shoulders for crying on, and my arms for hugging others with Dementia.

Unfortunately, Alice's husband John seems incapable of accepting that journey, and for most of the book is in denial. He even considers taking a job in New York to advance his career, in spite of the protestations of their children who are worried it will hasten Alice's decline.

Perhaps the only disappointment of the book is Alice's lack of examination of the spiritual consequences. Alice does find herself in a church looking for some hope, early in her crisis, but there is just an empty building, no-one finds her there, and she leaves feeling "like a trespasser, undeserving, unfaithful. Who was she to ask for help from a God she wasn't sure she believed in, in a church she knew nothing about?"

From that point there is silence about spiritual help or life after death; but I am sure there is a lot more questioning and looking for comfort from those struggling with the disease or providing care. With estimations of a rapid increase in the prevalence of Alzheimer's, there will be a growing opportunity for Christians to extend love, acceptance and hope.

This book is a great read for those with Alzheimer's or a caregiver, or those who are simply curious.