Monday, January 26, 2015

Alzheimer's, Literature, and Still Alice

There is no disease that strikes more fear into the hearts of most of us than Alzheimer’s disease, the thief of memory, the robber of human dignity. Over the last two years, I have had the privilege to speak to many people about this disease and the topic is usually met with a shudder, followed by the words “oh, God.”  Some people are unable to discuss the subject at all, tearing up, shaking their heads, and walking away. Alzheimer's is the disease of my generation, affecting our grandparents and parents at an alarming rate, with the number of cases expected to TRIPLE by 2050. Unfortunately, it does not get enough attention through the popular media to educate us about it, to start a public conversation, or to teach us how to prepare for the tsunami of cases coming our way. 

The recent release of the movie Still Alice, based on the bestselling novel by neuroscientist Lisa Genova, has put Alzheimer’s disease in the spotlight. It’s the first major motion picture to take on Alzheimer’s in many years. Although the disease affects an estimated 5.5 million Americans (and 44 million worldwide), it has not yet penetrated pop culture in a meaningful way, so  it’s encouraging to finally see it addressed in the popular media in a way we can easily relate to, in all its emotional and horrific truth.

I didn't read Still Alice when Genova self-published it in 2007 or when Pocket Books (now Gallery Books) republished it in 2009 because I was in the midst of rewriting then publishing my own Alzheimer’s novel, Blue Hydrangeas. But with the release of the film imminent, I finally sat down and read Genova’s book. It is a fine representation of this disease, and one of the few dealing specifically with early onset Alzheimer’s, which strikes before age 65 and affects five percent of those with the disease.

Genova's heroine Alice Howland has just turned 50. Her life is rich with accomplishment and joy. She is a wife, a mother, and a well-respected, internationally known professor of linguistics at Harvard University. She has no reason to suspect that something is wrong with her brain, but a series of incidents in which she gets lost, forgets oft-repeated words in a lecture, and fails to get on a plane to attend a conference she’s well-prepared for frightens her enough to seek medical attention. When the test results come in she’s told she has early-onset Alzheimer’s. Thus begins a harrowing descent into dementia that affects everyone close to Alice and turns all of their lives upside down.

Watching Alice’s decline is heartbreaking and seems too real, because we know the possibility of Alzheimer’s may exist in any one of us. Genova alternates her clinical knowledge with the human side of this illness, giving us sympathetic, believable characters and a number of credible scenes and scenarios.  Her book is both a manual on the how-to’s of the disease – how to get a diagnosis, how to get help, how to cope - as well as an expertly woven story of one woman’s experience of this disease. I recommend Still Alice for anyone interested in learning more about Alzheimer's, whether or not they or a loved one have the disease. 

As a nurse who writes short stories and novels about families struggling with medical issues, I value books like Still Alice and respect authors like Lisa Genova. There are many ways to educate people about a condition or disease. In regard to Alzheimer’s, there are hundreds of books available to explain the disease, advise what to do about it, how to handle it, and offer solutions and support for caregivers. These are all excellent resources. However, as a novelist, I feel stories that enlighten through the careful balance of useful facts and a cast of relatable and realistic characters may be a better way to shed light on this and many other medical issues. This type of presentation enables the reader to get inside the head of the Alzheimer’s patient, their caregivers, spouse, children, and other loved ones. It’s up close and personal, not clinical and removed. 

Throughout my research for Blue Hydrangeas and beyond I've read many novels about Alzheimer's and dementia which I’d also like to recommend. They include: Nicholas Sparks' The Notebook, (also in film), The Almost Moon by Alice Sebold, Untethered: A Caregiver's Tale by Phyllis Peters, Saving Grace by Barbara Delinsky, Still Time by Maria Hoagland, Eric Rill's An Absent Mind, and The Warrior With Alzheimer’s by Stephen Woodfin.

In addition to novels, memoir can also serve as an educational resource with personal insight, bringing the reader closer to the subject than a self-help or how-to book can.  Many such books were helpful to me in my research. I recommend: Elegy for Iris by John Bayley (also in film as Iris), The House on Beartown Road by Elizabeth Cohen, Thomas DeBaggio’s Losing My MindMy Mom, My Hero by Lisa R. Hirsch, Released to the Angels: Discovering the Hidden Gifts of Alzheimer's by Marilynn Garzionne, Inside the Dementia Epidemic: A Daughter's Memoir by Martha Stettinius, and Nell Lake’s The Caregivers. The recently released Alzheimer's Daughter, Jean L. Lee's account of caring for two parents with Alzheimer's at the same time, brings knowledge and solace to those grappling with this illness (read my review.)

Two new titles on my to-be-read list gaining much acclaim lately are On Pluto by Greg O'Brien and Matthew Thomas' We Are Not Ourselves.

Alzheimer’s is a frightening possibility, but to meet it without knowledge or an understanding of its implications increases despair and hopelessness and strips one of the power to make competent decisions and access necessary supports and resources. Knowledge gained through literature and film can be as practical and useful as any self-help or how-to manual.

Still Alice, the film, has not yet been released in my area. I look forward to seeing it.

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