In her new book, STILL ALICE, Dr. Lisa Genova tells the fictional story of Alice Howland, a brilliant and young Harvard University professor diagnosed unexpectedly with Alzheimer's Disease. A minimun of $1.00 per book sold will go to Alzheimer's care and research.
Alzheimer's is not a disease reserved exclusively for the elderly. It can surface at age fifty-eight. Forty-eight. Thirty-eight. In her new book, STILL ALICE, Dr. Lisa Genova (Ph.D., Neuroscience, 1998) tells the fictional story of Alice Howland, a brilliant and young Harvard University professor diagnosed unexpectedly with Alzheimer's Disease.
"There are over half a million people in the U.S. alone under the age of sixty-five diagnosed with Alzheimer's," says Genova, "and they're not included what gets talked about when people talk about Alzheimer's. The general public knows what the eighty-five-year-old grandparent in end stages of the disease looks and sounds like, but they have little idea what the fifty-year old parent with Alzheimer's looks and sounds like. It's time this group had a face and a voice."
Through insight gained from intimate conversations with people from all over the world living with early-onset Alzheimer's, Genova gives a hauntingly accurate portrayal of a young woman's descent into dementia from the prime of life and the loftiest of cerebral heights. And through insight gained from her Ph.D. in Neuroscience, she deftly weaves the insidious and unseen molecular events underlying Alice's vanishing memories into the fabric of the story.
"I shadowed neurologists at Massachusetts General Hospital and Brigham and Women's Hospital in Boston. I talked to research scientists, general practice physicians, genetic counselors, and social workers. And I emailed with people living with early-onset dementia daily for over a year," says Genova. "Alice is fictional, but I felt a very real responsibility to show her diagnosis, treatment, and symptom progression as truthfully as possible."
Fifty-year-old Alice initially attributes fleeting episodes of forgetting to signs of normal aging or to symptoms of menopause. As her symptoms worsen, she becomes diagnosed with Alzheimer's and loses her professional life at Harvard, where she'd placed her worth and identity, where she'd been valued and respected. Without it, she embarks on a desperate search for answers to questions like 'Who am I now?' and 'How do I matter?' Through an ever-thickening haze of dementia, she fights to hold on to essential pieces of herself and to find meaning in previously neglected relationships with family.
"Most people forget where they put their keys, a person's name here and there, and they rely more and more on To-Do lists as they get older. But for those with Alzheimer's, the cognitive lapses are far worse, and they're not due to stress or depression or menopause. Too many people and their families pass off real symptoms for years," says Genova. "I hope STILL ALICE creates an increased awareness of the constellation of symptoms that indicate Alzheimer's Disease so people who have them can get diagnosed and on proper treatment earlier, and I hope it generates a greater sensitivity to the challenges that young people with early-onset Alzheimer's live with every day."
Genova has also partnered with the National Alzheimer's Association in their mission to end Alzheimer's Disease. She is writes the blog for the Association's VOICE OPEN MOVE website, www.actionalz.org, and she is personally donating a $1.00 per book sold to care and research through the Association. The Alzheimer's Association, the first and largest voluntary health organization dedicated to finding prevention methods, treatments, and an eventual cure for Alzheimer's, has officially endorsed the book.
"It's both a wonderful story and great way to communicate needed information about the experience of Alzheimer's Disease," says Peter Reed, Ph.D, Senior Director of Programs at the National Alzheimer's Association.
"It was an opportunity I couldn't pass up," says Genova. "Awareness isn't enough. Dollars are needed to fund resources for families struggling through this crisis and to fund the research that will lead to a cure."
By joining the VOICE OPEN MOVE campaign, Genova hopes her book can contribute on a large scale. The campaign was launched in April of this year to enhance resources available to individuals with dementia and their caregivers and to eliminate Alzheimer's Disease through the advancement of research. Champions lending their voices and support include celebrities Olympia Dukakis, Dick Van Dyke, Peter Gallagher, Sarah Polley, and David Hyde Pierce.
There are currently over 5 million people in the US living with Alzheimer's, with someone new developing the disease every 72 seconds. It's estimated that there could be as many as 16 million in the US with Alzheimer's by 2050 if a disease-altering treatment isn't found.
"Dr. Genova's account, written with great clarity and compassion, reveals a difficult truth that many of us will be forced to face in the coming decades--dementia in our self or a loved-one," says Alireza Atri, M.D., Ph.D, Neurologist at the Massachusetts General Hospital Memory Disorders Unit. "Her revealing insights into these deeply personal experiences shows true empathy and understanding not only of cognitive neuroscience and dementia, but also of the human condition."
"I didn't set out to write a novel with a social mission. I was writing a story about what dementia does to identity, worth, and relationships," says Genova. "In the end, I think I've done both, and I hope we can squeeze as much good out of it as possible."